# MAP Vaccine Ready for Human Trials - Could be Used for Crohn's



## electrichead

Professor John Herman Taylor is at the very forefront of research into Crohn's disease and is a researcher at St Georges university London. 
His vaccine is ready to go to human trials!

"We have made such a vaccine against MAP. It took us 8 years and cost, in cash terms, around £750,000. In extensive pre-clinical tests in mice and recently in cattle, the vaccine given in 2 shots has proved to be a powerful and safe long-lasting stimulant of anti-MAP immune cells with no side effects. It is highly effective against MAP. The vaccine has an excellent chance of doing the same thing for people with Crohn’s disease. With the funding we can get the vaccine GMP manufactured for human use and conduct the essential approved Clinical Trials."

I recently emailed the professor asking how things were going, he replied with this;

"The vaccine has given us excellent results in a 3 year BBSRC funded trial which finished this spring 2013.
No side effects.
We have just submitted a big grant application to the gov's Technology Strategy Board for money to manufacture the vaccine for human trials. Will hear Jan 24th whether we get final interview Feb 18/19.

Thanks....John H-T."

*Administrator note:* If you want to help open the attachment below. - Jennifer​


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## Rocking on

Umm, what?


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## rrhood1

This is what came up when I googled John Herman Taylor:

Professor John Hermon-Taylor of Saint George's, University of London, is appealing for help to fund the final stages of development of a new Crohn's vaccine, which is now ready to proceed to human clinical trials.

Crohn's Disease
Crohn's disease is a severe inflammation of the intestine causing untold misery to almost 180,000 sufferers in the UK alone, and millions in the rest of the world. In many cases there are clear genetic links, but there is now good scientific evidence that the disease is caused by the bug Mycobacterium avium subspecies paratuberculosis (MAP).
Over a period of 8 years and at a cost of about £1.5 million, a research team at St George's Hospital Medical School (now St George's, University of London) led by Professor John Hermon-Taylor, has developed a state-of-the-art modern therapeutic vaccine to kill MAP and get rid of the distressing symptoms that blight the lives of so many sufferers and their families.

The vaccine will move to clinical trials and market development over the next three years. Over this period there is an absolute scientific requirement to develop tests that will establish proof that the vaccine will make people with Crohn's disease better. This final essential piece of scientific research will require £550,000.


You can also help by signing the online petition to the government for funding.


More about the disease, the new vaccine and the appeal...
What is Crohn's disease? 
Most people know of someone with Crohn's disease symptoms. The principal manifestation is chronic inflammation of the intestine (colitis or IBD) with stomach pain and diarrhoea. Crohn's Disease (CD) affects your whole life, and that of your family. It is a 'new' disease which emerged in the mid 1940s and has now become common. There are probably more than 180,000 people suffering from it in Britain, rising at the rate of about 5,000 per year. In Europe CD is rising at about 25% per decade. In children the rate of increase is much higher.
Some Crohn's advice can be found on the Action Medical Research website.

What causes Crohn's disease? 
The causation of Crohn's Disease has not been fully understood, nor recognised. As a consequence, conventional research and treatment are directed almost exclusively at suppressing the inflammation. This may help in the short term, but the disease almost invariably comes back. Most people with CD eventually have surgery, sometimes on more than one occasion. Epidemiological research has shown that the long term prospects for people with Crohns Disease have not improved significantly in 35 years.

Progress so far 
Research we began and have continued since 1985, and which is now increasingly being taken up and confirmed by other research laboratories, shows that Crohn's Disease is largely caused by a bug called MAP (short for Mycobacterium avium subspecies paratuberculosis). The reliable scientific evidence for this has grown very strong.

• MAP infection is widespread in the animal world.
•	MAP is being transmitted to humans in milk and from exposure to environmental sources like contaminated waters.
• MAP in people is difficult to detect. The tests have to be done just right. When they are, almost everyone with Crohn's Disease is found to be infected with MAP.
• MAP is what is called in microbiology a multi-host pathogen with the proven scientific ability to cause chronic inflammation of the intestine in many animals including primates. MAP is doing the same thing to people.

Modern Vaccines 
MAP infections are difficult to eradicate. They are resistant to most antibiotics and drugs used to treat TB. In 1992, Prof Hermon-Taylor introduced a new treatment for Crohn's Disease using a combination of two recently available drugs more active against MAP, called rifabutin and clarithromycin. They work in over 50% of people with active CD who can take them. Relapses sometimes occur. New anti-MAP treatments such as modern therapeutic vaccines are needed. Conventional vaccines make antibodies to prevent disease. They could not work in CD as the MAP bugs are already there inside cells. Modern vaccines make armies of hunter-killer cells which patrol the body getting rid of infected cells. So modern vaccines can be used to treat diseases caused by chronic infections.

A Crohn's cure? 
Prof Hermon-Taylor and his team began seeking funding in 2001. Since then they have received and committed over £1.5 million. With this they have designed and delivered a state-of-the-art modern anti-MAP vaccine. It consists of a critically important cassette of MAP DNA in two harmless carrier viruses called Ad5 and MVA. These carriers are already working in approved clinical trials with other modern vaccines. In the Crohn's Disease vaccination treatment procedure, the Ad5 is given first and the MVA boost 6 weeks later. In multiple tests over the last two years, the Crohn's vaccine has consistently proved to be effective both in treating existing MAP infection and protecting against subsequent MAP infection, without any side effects.

What is still needed? 
We have come a long way and are nearly there. The Crohn's treatment will move to clinical trials and market development over the next 3 years. Over this period there is an absolute scientific requirement to develop new quantitative tests for MAP in humans, new immunological tests for MAP in humans, and tests for the specific immune responses of people to the vaccine. Together these tests will establish proof of concept that anti-MAP vaccination can make people with Crohn's disease better, and it does so by depleting or eradicating the MAP infection. This final essential piece of scientific research will require £550,000.


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## electrichead

hey rrhood1 - that information regarding the progress of the vaccine is out-of-date, if you check the bottom of the web page you will see 
The email I got was received about 2 weeks ago!


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## Malgrave

Can you please clarify, bottom of which web page? I didn't see any links above....


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## DamnitCrohns

I like it. Sign me up!


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## rollinstone

Would be sooo good if it works!


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## DamnitCrohns

Why can't I find any decent information about this guy on google? He's mentioned once or twice in other peoples biographies on the St Georges website and theres that daily mail article but other than that it's just a load of extremely dated looking websites.

And OP where has your information come from?

*EDIT:*

I found a Facebook fundraising group run by his daughter, I can't link it as its against forum rules but I found the following post interesting.

A post on 4 Dec 2013:

"_What's one thing you wish everyone knew about IBD?

That a treatment #vaccine for Crohn's has been made and is awaiting a trial in humans.
A Crohn's cure is so very close
Help me raise the money to fund the trial!_"

:luigi:


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## xmdmom

http://www.youtube.com/watch?v=5pYuf5rnnQo  and http://www.youtube.com/watch?v=VRt5sbc2LOsthis are 2 videos 2008 by Taylor about Crohns and MAP


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## DamnitCrohns

xmdmom said:


> http://www.youtube.com/watch?v=5pYuf5rnnQo  and http://www.youtube.com/watch?v=VRt5sbc2LOs are 2 videos 2008 by Taylor about Crohns and MAP


I just finished watching those videos too. Aside from everything else, the bit that stood out to me the most was when he was talking about it being airborne (in either the 2nd or third part, Ican't remember) and people breathing it in and developing a cough before they developed Crohn's. That's exactly what happened to me. I had this horrible persistent cough for a couple of weeks before my Crohn's symptoms started showing up. Until that video I never would have thoughts the two would be related! But maybe..


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## xmdmom

There are 5 videos in all.

http://www.youtube.com/watch?v=5pYuf5rnnQo
http://www.youtube.com/watch?v=VRt5sbc2LOs
http://www.youtube.com/watch?v=pUg1hlKsM7o
http://www.youtube.com/watch?v=7XScG474EiI 
http://www.youtube.com/watch?v=0TBd-bddNjE


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## ellie

Article I found on- line about Prof Hermon-Taylor's research:

 Review
Mycobacterium avium subspecies paratuberculosis, Crohn's disease and the Doomsday scenario
John Hermon-Taylor

Correspondence: John Hermon-Taylor j.hermon@kcl.ac.uk

Author Affiliations
Division of Nutritional Sciences, Franklin-Wilkins Building, King's College London, 150 Stamford Street, London, SE1 9NH, UK

Gut Pathogens 2009, 1:15  doi:10.1186/1757-4749-1-15


The electronic version of this article is the complete one and can be found online at: http://www.gutpathogens.com/content/1/1/15


Received:9 July 2009
Accepted:14 July 2009
Published:14 July 2009
© 2009 Hermon-Taylor; licensee BioMed Central Ltd. 
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract
Johne's disease is chronic inflammation of the intestine caused by Mycobacterium avium subspecies paratuberculosis. Infection and disease are mainly in domestic livestock but can affect many species including primates. Johne's is a new disease which emerged at the turn of the 19th and 20th centuries and principally involved Europe and North America. It has since spread to former low incidence regions to become a global problem. Crohn's disease is a chronic inflammation of the intestine in humans which emerged in Europe and North America mid 20th century and increased to become a major healthcare problem. It has now spread to former low incidence regions. Infected animals shed Mycobacterium avium subspecies paratuberculosis in milk and into the environment. Human populations are widely exposed. Outcomes maybe influenced by microbial phenotype. Exposure to extracellular forms of these pathogens may confer some natural protection; exposure to intracellular forms which have passaged through milk macrophages or environmental protists may pose a greater threat to humans particularly individuals with an inherited or acquired susceptibility. Hot spots of human disease such as in Winnipeg which sits on rock at the junction of two rivers may result from local exposure to high levels of waterborne pathogens brought down from farmland. When appropriate methods are used most people with Crohn's disease are found to be infected. There are no data which demonstrate that these pathogens are harmless to humans. An overwhelming balance of probability and Public health risk favours the conclusion that Mycobacterium avium subspecies paratuberculosis is also pathogenic for people. A two tier co-operative pathogenic mechanism is proposed in Crohn's disease. Intracellular infection with the primary pathogen widely distributed throughout the gut causes an immune dysregulation and a specific chronic enteric neuropathy with loss of mucosal integrity. Segments of gross inflammatory disease result from the perturbed neuroimmune response to penetration into the gut wall of secondary pathogens from the lumen. These include both normal gut organisms and educated members of the enteric microbiome such as more aggressive E. coli. More new diseases may arise from failure to apply a range of remedial measures to this longstanding zoonotic problem.

Review
MAP and the emergence of Johne's and Crohn's diseases
Johne's disease (JD) is a systemic infection and chronic inflammation of the intestine in animals caused by Mycobacterium avium subspecies paratuberculosis (MAP). It is most common in ruminants but can affect many other species including primates. It was first seen to emerge in Europe and North America at the end of the 19th and beginning of the 20th centuries. Crohn's disease (CD) in humans is a systemic disorder whose principal clinico-pathological manifestation is also chronic inflammation of the intestine. It is also a new disease which was first seen to emerge in the same continents 40–50 years after JD and increased in frequency steadily until it has become a major healthcare problem. In some areas in the USA in recent years the incidence of CD has seemed to plateau around 7–8 per 105 population per year [1,2]. In Europe the incidence of CD in adults continues to grow [3-5]. Studies in Stockholm, Czech Republic, and Australia supported by data from Finland suggest that the incidence of CD in children in these areas in recent years has been rising in some cases as high as about 5 fold per decade [6-9]. These rapid changes in incidence rule out a primary genetic causation of CD. The data from recent genome wide scans which has identified 32 significant genomic loci related to susceptibility to CD are consistent with the involvement of intracellular bacterial pathogens including mycobacteria, in disease causation [10].

The rising incidence of CD reported from several former low incidence countries in Asia shows that, as with JD, CD is spreading worldwide [11,12]. Recent work from New Zealand reported a high incidence of CD of 16.5 per 105 per year affecting the Canterbury region of South Island with Christchurch as its principal city [13]. Mountains are to the northwest and rivers from them run across rich agricultural pastures and either side of Christchurch before entering the sea. A small river meanders through the city itself. Some of these features are reminiscent of the situation in Cardiff, South Wales UK where a high incidence of CD in city wards bordering the river Taff draining the upland pastures of the Brecons and running through the city was consistent with exposure of the local population to aerosols from the river [14].

A conspicuously anomalous distribution in the incidence of CD exists in North America either side of the Canadian border between Minnesota and Manitoba. In Minnesota to the south the well documented population-based incidence of CD in Olmsted County is 7.9 per 105/year [1] whereas in some areas of the city of Winnipeg little more than 400 miles to the north the incidence reaches a maximum 3.5 fold greater at 28.07 per 105/year [15]. Winnipeg lies astride the junction of the Red River of the North running up from the south and the Assiniboine River coming in from the west. The city sits on bedrock which was once the floor of the immense prehistoric glacial lake Agassiz, with scant run-off in permeable sand and gravel aquifers [16]. The 'hot spot' of CD in the city of Winnipeg we see now is probably due to local exposure of the human population to high levels of waterborne MAP brought down from the agricultural river catchments of the US Midwest, meeting those from the provinces of Manitoba, Saskatchewan and Alberta. Waterborne MAP under these conditions would almost certainly include organisms which have adopted the intracellular phenotype having been taken up by abundant environmental protists [17].

Movement of people and pathogen
Migrant studies show that the incidence of CD in people moving from a low CD and JD incidence area to a high incidence area subsequently rises to that of the host population. The inverse situation is that in which MAP is introduced into an isolated community usually by importation of infected animals. This happened in Iceland in 1933 [reviewed in [18]]. After a latent period following introduction of the pathogen there were at intervals successive epidemics of JD in the island sheep, then in the cattle, then CD in the human population. From 1960 to a peak in 1992 the incidence of CD increased 18 fold. Thus in either case, if people move in amongst MAP or if MAP is moved in amongst people the result is the same namely a steep rise in the incidence of CD. The time interval between the emergence and rise of JD in animals and CD in humans in Iceland was again about 40–50 years. With the almost unlimited opportunity for MAP to spread and evolve in intensively farmed domestic livestock and associated contaminated environments over more than a half century, an evolving virulence and species adaptation of the pathogen would be reflected in the JD to CD interval becoming shorter. A recent example of this happening maybe the steep 4.5 fold increase in CD in the Czech Republic 1995–2007 following the rise in JD caused by the unimpeded importation of subclinically infected cattle from Western Europe after independence in 1990.

Natural Immunity to MAP from environmental and occupational exposure
Why don't dairy farmers and veterinarians exposed to MAP-infected animals get a much higher incidence of CD? Data from the US show that these occupations are in fact associated with a significantly reduced death rate from Inflammatory Bowel Disease [19]. Children exposed to farm animals, particularly cattle, in early life also subsequently have a lower incidence of CD [20]. Occupational exposure to MAP is associated with raised antibody levels to MAP lysates [21]. An answer to the question consistent with these observations is that the extracellular classical ZN-positive phenotype of MAP excreted in trillions by heavily infected animals is not one to which humans are most susceptible. Exposure to this form of the organism may result in the acquisition of some natural immunity to disease. A good example of this happening as a result of purposeful exposure is the approximate 10 fold reduction in clinical Johne's disease achieved subsequently by vaccination of calves using conventional whole killed MAP vaccines with the organisms in this form [22]. The well described urban preponderance of CD may not be that townsfolk have an increased susceptibility to CD, rather that country folk have some natural protection. Passage of MAP through bovine macrophages in milk and cheese or through environmental protists would result in a switch to an intracellular phenotype of MAP likely to have an enhanced virulence for humans [23,24].

MAP and the convergence of candidate pathogens
With the new 21st century, a steadily increasing volume of parallel research has identified three principal sets of bacteria as candidates for the causation of the gross inflammatory disease of the intestine in CD. These are the community of normal gut flora [25], abnormal gut flora such as adherent invasive E. coli (AIEC) [26], and MAP. Because of the global advance of CD and the serious implications for Public Health as well as cumulative individual suffering, there is a need for researchers and clinicians in the field to recognise that the reliable evidence obtained from each of the three lines of inquiry is convergent and that there is actually no conflict between them.

From experimental as well as clinical evidence there is no doubt that bacteria from the normal intestinal microbial community can infect and inflame the gut wall and that they do so in CD. However, the spontaneous emergence and rise of CD in human populations across the globe due to an epidemic of normal gut flora, in the absence of another specific initiating cause, seems rather improbable. The enteric microbiome is a fertile environment for horizontal gene transfer [27]. Advancement of pathogenicity in bacteria may follow the acquisition and mutation of genes and changes in their regulation [28-30]. We already have examples of the pathological consequences of such adaptation in common gut bacteria such as E. coli which can be enteropathogenic, enterohaemorrhagic, enterotoxigenic, enteroaggregative and recently enteroadherent and invasive AIEC [31]. Such adaptations usually arise due to the imposition of some external selection pressure. Recent evidence also suggests that common enteric bacteria like E. coli may display predictive behaviour [32].

The principal property of MAP which distinguishes it from all other candidate pathogens in the primary causation of CD is that it is an established multi-host chronic enteric pathogen. MAP has the proven specific ability to initiate and maintain chronic inflammation of the intestine of a range of different histopathological types in many species including primates. MAP infection in animals causes a local and systemic immune dysregulation. It is also specifically neuropathogenic especially for non-myelinated neurones and intestinal disease is accompanied by a chronic enteric neuropathy [33]. Despite its broad pathogenicity, MAP infection can persist in animals for years without necessarily progressing to clinical disease. Clinical disease in animals when it occurs is commonly of the pluribacillary type but paucimicrobial disease with the pathogens in a Ziehl Neelsen (ZN)-negative phenotype is well described.

The overall prevalence of MAP infection in US dairy herds is reported by a USDA survey to be 68.1% [34]. A range of broadly similar data shows that MAP infection in farm animals is widespread in many areas of Western Europe and elsewhere. MAP contaminates and persists in water and the environment, is in dairy products, can survive milk pasteurisation, and is present in meat from infected animals. It is inevitable that human populations are widely exposed.

MAP in humans
MAP infection in humans is difficult to detect. The organisms are present in low abundance in a robust ZN-negative phenotype. They are intracellular and minimise their own immune recognition. They are extremely difficult to isolate and propagate in culture and are relatively resistant to chemical and enzymatic lysis. Reliable access to their DNA is only achieved during sample processing by combining exposure to stringent lysis buffers with an additional optimised mechanical disruption step. Freezing samples and tissue extracts especially at -20°C substantially reduces the PCR detection rate of their GC-rich DNA. The organisms have been cultured and detected in blood showing that, as in animals, the infection in humans is systemic [35-37]. At present, the benchmark diagnostic test for MAP infection in humans is nested PCR applied to single ~20 mg fresh endoscopic mucosal biopsies [38]. When validated methodologies have been used most people with CD have been found to be infected with MAP [39]. In simple words, most people with chronic inflammation of the intestine (of the CD type) are infected with a mycobacterium which is a proven specific cause of chronic inflammation of the intestine. There are no data which demonstrate that MAP are harmless to humans. The overwhelming balance of probability and public health risk favours the conclusion that MAP are also pathogenic for people.

Inflammation in Crohn's disease caused by a two tier co-operative pathogenic mechanism
MAP infects the gut widely in CD and is found both in the more normal looking intestine and the grossly inflamed and diseased segments of intestine [33]. MAP antigens have appeared to dominate the immunological responses of intestinal CD4 T cell lines from patients with CD [40]. Mannans released by MAP inhibit intracellular killing of internalised bacteria [41].

The MAP infection causes a primary microscopic inflammation accompanied by a specific immune dysregulation and enteric neuropathy [33]. Mucosal integrity and other critical functions of the intestine are impaired. The visible segments of gross inflammatory disease result from the perturbed neuroimmune response to the secondary penetration into the gut wall of gut flora containing both normal intestinal bacteria and those which have undergone transformations leading to a more invasive phenotype like AIEC. It is important to note that genomic loci in the host conferring genetic susceptibility to Crohn's disease have the potential to operate at the levels of both primary and secondary pathogens. The entry of food residues into the gut wall contributes an allergic component to the inflammatory mess. Although MAP has been found in intestinal granulomas in humans [42], the presence or absence of these and other features of the variable histopathological picture of CD are principally determined by the large scale response to the secondary co-pathogens including especially other granulomatous species like M. avium subspecies avium which are frequently recovered in culture from CD tissues [38]. Thus the three lines of contemporary research inquiry come together in a two tiered co-operative pathogenic mechanism.

MAP doomsday
Imagine the collective human enteric microbiome in, say, a crowded Europe. A vast composite structure made up of millions of individual highly mobile microbial reservoirs variably interconnected in time and space and degree. A dynamic structure possessing an inherent self governing order and stability not easily displaced. Into this cellular system is progressively introduced a slowly growing specific mycobacterial pathogen which has acquired the genetic machinery necessary to cloak itself with a predicted fucosylated surface [43] so that it conforms with the familiar molecular environment particularly of the host's epithelial cells and mucosal compartment [44]. It has come from the parallel universe of the collective enteric microbiome of human food animals and before that from the soil. It causes a microscopic inflammation and perturbs the microenvironment of the mucosa and gut wall. To survive and prosper it minimises its confrontation with the human immune system. It causes a variable immune dysregulation but it also inflames the fine structure and function of the enteric nervous system.

More than a hundred years go by. Both animal and human total microbiomes swell with increasing population density. The mycobacterial pathogen acquires additional properties resulting in an evolution in its behaviour with an increase in pathogenicity and species range. Some normal inhabitants of the enteric microbiome adapt to the disturbed intestinal microenvironment and they too acquire characteristics which make them more invasive. Chronic enteric disease emerges and spreads particularly in individuals with an inherited or acquired susceptibility. Humans responsible for controlling and managing these diseases, blind to what is really happening are distracted by detail and dismissive. The required remedial measures are not designed and applied and the problems get worse. Left undisturbed, maybe the education in hostility already received by increasingly aggressive members of the former normal gut flora will progress to the point where they too can emerge from background to become primary independent pathogens in their own right. When they do so more new diseases will emerge.

Can anti-MAP treatment heal Crohn's disease?
The answer to this question supported by a correct interpretation of data both from open label studies [45-48] and the Australian controlled clinical trial is a qualified yes [49-51]. It can in some people with CD some of the time. When it does so in 'responders' receiving treatment with drug combinations including rifabutin and clarithromycin the clinical and pathological improvement can be dramatic and has been associated with the conversion of pre-treatment MAP positive tests in blood [52] and gut mucosa (my own unpublished observations) to negative. Furthermore, some of the clinical benefit resulting from treatment of CD with conventional 'immunosuppressive' agents such as 6-mercaptopurine or methotrexate may actually be a consequence of their demonstrable direct anti-MAP action [53-55]. But MAP infections are difficult to eradicate. The organisms are generally resistant in vivo to drugs conventionally used in the treatment of tuberculosis. Treatment is prone to all the problems of microbial drug resistance and latency encountered in the management of chronic lung disease caused by other members of the M. Avium Complex.

New clinical trials are needed of anti-MAP treatment in CD particularly of agents developed for the treatment of M. tuberculosis which are active against mycobacteria in the non-replicative state [56] and where the gene encoding the molecular target is shared by MAP. Rich clinical and commercial rewards are out there for those who do so successfully.

Conclusion
Recognition and acceptance of the true nature of the expanding long term threat to human health posed by widespread exposure to MAP, based upon a perceptive understanding of the problem and the overwhelming balance of reliable scientific evidence, is a matter of urgency. The solutions lie in the identification and incremental introduction of a range of remedial measures which are both scientific and regulatory whose effective application on a global scale requires close international cooperation.


 HD


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## william4

DamnitCrohns said:


> I just finished watching those videos too. Aside from everything else, the bit that stood out to me the most was when he was talking about it being airborne (in either the 2nd or third part, Ican't remember) and people breathing it in and developing a cough before they developed Crohn's. That's exactly what happened to me. I had this horrible persistent cough for a couple of weeks before my Crohn's symptoms started showing up. Until that video I never would have thoughts the two would be related! But maybe..


my son dx @ 10 yrs old had (and still has) a persistent cough for about 4 years or so doctors can only say its post nasal drip


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## sir.clausin

We need this N O W!

I´ve sent an e-mail to them. If and when I hear something I´ll come back with info.


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## DamnitCrohns

sir.clausin said:


> We need this N O W!


Im with you, I've definitely started celebrating far too soon but i couldnt sleep last night after watching those youtube videos of his speech. The government needs to give this man some damn money so he can do his trials already! oo:

...and if it turns out not to work ill start trying fecal transplants.


...and if that doesnt work i'll call it a day, move to amsterdam, and get high until i run out of money.


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## electrichead

Isn't it exciting! We have to get this money raised people, if the UK government aren't going to support it then that leaves us!!


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## sir.clausin

The money is the least of all problems, if that is the only thing being left for the vaccine to become a reality, then we´ll start a petition/crowdsourcing.

I will contact them as soon as they open again.


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## rollinstone

sir.clausin said:


> The money is the least of all problems, if that is the only thing being left for the vaccine to become a reality, then we´ll start a petition/crowdsourcing.
> 
> I will contact them as soon as they open again.


let us know how you go w contacting them please. i'm hopefully going to be starting anti-map therapy in feb. praying it is the thing that fixes me up. upon lots of research I am very hopeful but as we all know w this disease theres such an element of unknown that hangs over us like a dark shadow.


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## worriedboy

Joshua - good luck with the anti-map; hopefully it will get you into deep steady remission. How are you going to do this ? do you have a DR who will treat you bythis protocol ? are you participating in some trial ?


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## rollinstone

Hi worriedboy, I'm going to see dr Borody who will do a scope on me and then pending tests start me on the therapy. Thanks for the well wishes, I do believe it's going to be the thing that works. By process of elimination the only thing that could be causing my illness is an infection, if it were my immune system going haywire then the immuno suppressants would be working...


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## Garbanzo

I doubt the established drug companies will support this! they will most likely tear the study a part and call failure during its initial stages


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## kiny

Established drug companies are not interested in crohn's disease causality. Most are interested in using crohn's disease as a platform for RA development.

Since people with crohn's disease are often desperate for a treatment, they are an easy candidate to test immunosupressants on. (like tisabri where they managed to kill people)

Research should be going to how microbes / paneth cells / autophagy / genes are related to crohn's disease so people have *safe* treatment.

I doubt everyone with crohn's disease harbours MAP, it is really unlikely you can single out a pathogen, but this person actually gives hope to people and tries to cure people, which is great.

We don't need more treatment in the form of immunosupressants with all the risks attached to them, we need *safer* treatment.


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## rollinstone

MAP doesn't cause all cases, crohns likely has multiple causes, I don't think there is any disease that is just caused by one particular pathogen/bacteria. But hopefully this will be a cure for the vast majority of people with crohns. AEIC is another potential causative. Theres a lot of unknowns but one thing is for certain, crohns certainly is not an auto-immune disease, it's an infection, they're finding out now that the reason remicade may have the success it does
Is because it kills cells that are infected.


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## rollinstone

I'd like to add that Koch's postulates (the scientific criteria required to prove something causes a disease) has been fulfilled for MAP and crohn's, so that's not open for discussion, it's like trying to argue gravity. What's frustrating is so many practitioners aren't even aware of Koch's postulates... Furthermore, in an early anti-map trial (I posted the results on the forum somewhere) anti-map has had the highest remission rate ever reported, and that was a flawed design that actually made the results appear less effective, the remission response was 66% at 16+ weeks I believe, remicade was 36% at 26 weeks, ad they used CDAI which is notoriously unreliable.


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## electrichead

To the people who think large drugs companies are going to try to ban this vaccine - you can't think that way about all of these cures/vaccines that exist. Drug companies will profit from such vaccines by manufacturing/distributing them. Think about it - there are loads of vaccines available for a variety of diseases that could otherwise be 'treated' temporarily.


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## DamnitCrohns

So much rage.


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## rollinstone

so much rage... don't give up though, we need to launch some sort of petition.


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## sir.clausin

No no no, I do not approve with this, I will contact them and see what to do.


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## electrichead

Everybody needs to go on that "run for Crohns" page on facebook, on that page is alink to a charity set up by Amy Herman Taylor, the professors daughter.


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## DamnitCrohns

electrichead said:


> Everybody needs to go on that "run for Crohns" page on facebook, on that page is alink to a charity set up by Amy Herman Taylor, the professors daughter.


Sadly we're not allowed to promote charity collections on the forum for some reason. It would be nice to be able to get the word out to a large group of crohns sufferers so that some worthwhile donations could be made. I can't see why anybody with crohns wouldn't be willing to at least throw a tenner their way, even if they dont believe the MAP idea.


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## Karma

I wonder whether the minutes of the strategy board are published.

May I suggest all of us in the UK write to our MPs and try to get them to lobby, raise questions and so on about this.  It might also be possible to try and get some news coverage?!

Edit: they do have a website.  Lots of interesting info on there.

I wonder whether there's other places funding could be found.  What about Kickstarter?


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## electrichead

DamnitCrohns said:


> Sadly we're not allowed to promote charity collections on the forum for some reason. It would be nice to be able to get the word out to a large group of crohns sufferers so that some worthwhile donations could be made. I can't see why anybody with crohns wouldn't be willing to at least throw a tenner their way, even if they dont believe the MAP idea.



I know thats why I didn't post the link  (winky face, see what I did there)


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## electrichead

Karma said:


> I wonder whether the minutes of the strategy board are published.
> 
> May I suggest all of us in the UK write to our MPs and try to get them to lobby, raise questions and so on about this.  It might also be possible to try and get some news coverage?!
> 
> Edit: they do have a website.  Lots of interesting info on there.
> 
> I wonder whether there's other places funding could be found.  What about Kickstarter?



I've sent the story in to the BBC if loads of people did the same thing then they are bound to do some sort of story on it!


----------



## william4

just made a donation, granted small.


----------



## HelenMelb

Likewise. This has to get to trials.


----------



## rollinstone

Electric head can u post the link to bbc so we can follow suite


----------



## electrichead

Joshuaaa said:


> Electric head can u post the link to bbc so we can follow suite


Hey guys sorry this took so long
http://www.bbc.co.uk/news/10725415


----------



## JMC

My Prof at another major London hospital has always been dismissive of the MAP theory, I must ask him about that again at my next appointment in a few weeks time. I hope Prof Hermon-Taylor is right, I would happily give him £50k if I knew it would cure me.


----------



## electrichead

JMC said:


> My Prof at another major London hospital has always been dismissive of the MAP theory, I must ask him about that again at my next appointment in a few weeks time. I hope Prof Hermon-Taylor is right, I would happily give him £50k if I knew it would cure me.


Hey there, it's a hot debate issue with those in the field, if you send me your email address in a pm I could send you the paper written by professor John Herman-Taylor and show you his evidence


----------



## electrichead

Hi all, received an email from the professor this week regarding WHY the vaccine won't be receiving any further funding from the Technology Strategy Board;


"Yes....it was a great blow to be rejected by the Technology Strategy Board.

We had hired an excellent professional to assist us with the application, and intense period lasting the whole of November. He has done many of these and put our application in the top quartile for excellence. So also essentially did our top vaccine partners at the Jenner Vaccine Institute in Oxford. So our outright rejection doesn't make sense.

I think we hit political enemies.....as so often with this issue.

I think you should get as many Crohn's families as you can to complain strongly against the decision.

With the wonderful results of the vaccine against MAP in cattle and no side effects a great potential improvement has been denied to the Crohn's community. 

please quote any of this email as you think appropriate.

An appalling decision. If you can persuade them to re-consider or launch an appeal so much the better.

best wishes...John "


----------



## rollinstone

Definitely some political bullshit going on, think about the controversy that would come out if it indeed turned out map to be the main causative, food industry would take a beating. There has to be some sort of way we can appeal, change.org or something...


----------



## HelenMelb

electrichead said:


> Hi all, received an email from the professor this week regarding WHY the vaccine won't be receiving any further funding from the Technology Strategy Board....
> 
> An appalling decision. If you can persuade them to re-consider or launch an appeal so much the better.
> 
> best wishes...John "


electrichead, I wonder if Prof Hermon-Taylor has applied to the Broad Foundation for funding? As a philanthropic organisation with a particular interest in Crohn's, they actively look for and fund promising treatments. Since you are in email contact with Prof HT, maybe mention it to him?

Cheers
Helen


----------



## AJC - Australia

Hey Sir Clausin - we need to crowndsource this! Something like kickstarter, where we all pledge like $5000…we all raise that $5000 ourselves, if everyone on here could raise $5000 and pledge it - the people behind the vaccines production would have a financial figure they need, say $4million to actually get it happening…..$4million divided by 20, 000 crohns sufferers is only $200 each! I rekon anyone with crohns would happily pledge $200-$5000 for the potential…..they wouldnt take the money unless the vaccine was approved for human use. I think some people with crohns would happily sign a form saying 'yep, try me'…..people who are having fecal transplants, for example. COME ON - lets get the crohns community together and raise some $$$$$$$$$$$ for this vaccine.


----------



## rollinstone

brilliant idea


----------



## JMC

happy poo poo said:


> Hey Sir Clausin - we need to crowndsource this! Something like kickstarter, where we all pledge like $5000…we all raise that $5000 ourselves, if everyone on here could raise $5000 and pledge it - the people behind the vaccines production would have a financial figure they need, say $4million to actually get it happening…..$4million divided by 20, 000 crohns sufferers is only $200 each! I rekon anyone with crohns would happily pledge $200-$5000 for the potential…..they wouldnt take the money unless the vaccine was approved for human use. I think some people with crohns would happily sign a form saying 'yep, try me'…..people who are having fecal transplants, for example. COME ON - lets get the crohns community together and raise some $$$$$$$$$$$ for this vaccine.


I wholeheartedly agree with this, what Crohn's sufferer would not be happy to donate, say, 10% of their income for a few years to get a cure?  The serious question though is, how do you mobilise people to make this happen?  If this forum is not the right place, let's get a group of people together on another social media platform and make it happen.


----------



## AJC - Australia

what does electrichead think?
It needs someone as the ringleader - someone to pull everyone together so there is one clear direction and strategy that involves media coverage and crowdsourcing (ie kickstarter or pozzible)….
straight up, the first thing that needs to happen is that the news in the this thread needs to be made into a concise document with the assistance of the professor and we need to make a press release to send to media. . . that press release needs some good photographs and quotes from doctors and sufferers. 
Then we need to raise awareness of MAP within this crohns forum and every other crohns forum/newsletter/association/facebook page etc. . . with a link to the crowdsourcing website where people can donate.
Then we need to continue to promote that page and raise the funds.

Can someone explain the politics? The doctor states 'I think we hit political enemies.....as so often with this issue.' Who are the enemies in this situation?


----------



## sir.clausin

I will speak with the professors daughter about this, I´ll skype her (Amy) in the coming week.

Let´s make this a reality! I would love to meet the professor and hear his thoughts.

PS. I remember bringing this up a loooong time ago with a doctor, and he said that "yeah well, we tried to go for the MAP-theory and treat for tuberculosis and that didn´t work". Can´t say I know how they tried, but my point being that I would like to speak to the doctor and see how the vaccine works and why he thinks it will "cure" all crohns sufferer.

Interesting times and may I say: FINALLY some real "medicine".


----------



## lc31

Map vaccine would be dream come true! I will be donating on pay day and writing to my MP and the BBC. The more attention drawn the better.


----------



## AJC - Australia

i saw my specialist yesterday and he said that they had done research on it and people with crohns had done 2 year courses with a three-pronged anti -biotic treatment, targetted towards the MAP bacteria, but it had not worked. I think his thoughts were 'yes you might have MAP in your gut but we dont think it causes crohns'….i want to know more. 

Did the vaccine actually get rid of Joynes disease in cows?


----------



## AJC - Australia

There is some great info here

http://www.crohns.org/treatment/vaccine.htm


----------



## rollinstone

happy poo poo said:


> i saw my specialist yesterday and he said that they had done research on it and people with crohns had done 2 year courses with a three-pronged anti -biotic treatment, targetted towards the MAP bacteria, but it had not worked. I think his thoughts were 'yes you might have MAP in your gut but we dont think it causes crohns'….i want to know more.
> 
> Did the vaccine actually get rid of Joynes disease in cows?


There were many problems with that trial, and in comparison to remicade and humira it still had a higher remission rate. There's a post on here about it.


----------



## AJC - Australia

thanks Joshua…i have contacted the people behind the vaccine but their website seems so dated!! I hope they write back……i am a believer in this MAP stuff….makes a lot of sense. Hope you are well at the moment.


----------



## kiny

It's very rare they test anything on cows with Johne's disease. Who is going to pay for that? It would be really interesting for example to see what infliximab does in a cow with Johne's disease, but no one has tested it, a cow is 5, 6 times the weight of a human? No one will pay for it.

Same reason why antibiotics are never used on cows with Johne's disease. There is plenty reason to use antibiotics because they infect the whole herd, but no one does it since it's not economically viable to use antibiotics on a huge animal like that. It is much cheaper to cull the animal instead, or turn it into a hamburger while no one is looking.

There have been many tests with bovine MAP, but they're in vitro tests.


----------



## Karma

IIRC the Daily Mail here in the UK has run stories about Crohn's before and, I think, mentioned the professor's work before.  I bet there's a chance they'd run a story on this!

'Government Quango....'

Edit: What about Larry Smarr - he might be interested....


----------



## electrichead

HelenMelb said:


> electrichead, I wonder if Prof Hermon-Taylor has applied to the Broad Foundation for funding? As a philanthropic organisation with a particular interest in Crohn's, they actively look for and fund promising treatments. Since you are in email contact with Prof HT, maybe mention it to him?
> 
> Cheers
> Helen


Hey Helen, I'll send him an email and ask him! Good thinking by the way.


----------



## electrichead

Hey all, I informed my MP of the situation and within the week he has written a letter to Jeremy Hunt for the issue to be taken up in government in Westminster! Please everybody in the UK please please make your MP aware of the situation!!! If my letter comes to nothing they can't ignore it when everybody brings it up!!


----------



## electrichead

The professor recently sent me the actual application they submitted to the board; it's extremely detailed (as you would imagine).
Some relevant facts from the application:
All Crohn's patients test positive for MAP (using Herman-Taylor's new diagnostic device).
The vaccine has been tested on MAP positive calves which reversed symptoms and MAP was not detected in autopsy.


----------



## puphead

Hi electrichead is it possible to make the application freely available for others. If the results are indeed as spectacular as they say I think it would be better to make some sort of a template that could be easily signed by anybody interested before being handed over.


----------



## electrichead

puphead said:


> Hi electrichead is it possible to make the application freely available for others. If the results are indeed as spectacular as they say I think it would be better to make some sort of a template that could be easily signed by anybody interested before being handed over.


Hey puphead I would love to but 1. I don't know how I would do that because its like 20 pages long and formatted such that all I can really do is read it and
2. I wouldn't want to risk copyright infringement, hence the information isn't a direct quote but a re-wording if whats written.
I'll ask JHT if there is some way though!


----------



## electrichead

But I promise you that is information in the official application.


----------



## AJC - Australia

*I have been in touch with the Professor. I asked him if I could share his email. He said YES>….SO here it is…and I made some comments below it. *

_This is where we are.
1. We have a modern T-cell vaccine which worked in mice and has given us fantastic anti-MAP action in cattle with no apparant side effects lasting as long as we had funds/time to go on testing (44 weeks) and reversing the dysregulation that MAP specifically imposes on the immune systems of both infected cattle and humans. Promises to be a game-changer in Crohn's disease (CD).
2. I have developed a practical clinical diagnostic for MAP in humans and am finalising this year the relevant clinical reagents.
It confirms all people with CD are MAP infected.
3. The UK gov TSB turned down our application for funding to 'GMP' manufacture the vaccine required for human use.
Don't know why. It was bloody good.

The vaccine.
The vehicle for getting the vaccine into the clinic where it belongs is a UK company HAV Vaccines Ltd No.6962730 (HVL) which
has obtained and owns all the patents running out to Jan 2027.
We are out there looking for the funding again.
Got several leads....nothing concrete yet. Big Pharma not interested until after the first human trials.
Getting the 2 components of the vaccine made to do these costs UK£1.2 million and £500,000.
In the present model the cost of the whole project with completion of approved Phase I and Phase IIa Clinical trials as a new treatment for CD is UK£4 million.
We have been trying for 4 years to get this from any source and have learned it is just too much for private investors.
We have a meeting with our collaborators at the Jenner Vaccine Inst Oxford University on Feb 20th.
We think we can get this figure down to not > £2.2 million doing it our way but within the regulations.
We also think this would be achievable from private investors say 22 each doing a £100K purchase of stock.
44 HNW CD families each investing £50K....yes....but more than that may get difficult to manage.
Crowd funding ? Could take a long time to get to that done ? Would probably need to have a CD Vaccine Trust set up to receive donations
independently which then invests. Returns go back to the Trust for use as determined by the Trustees (not us) but to further
the treatment and prevention of diseases caused by MAP (probably a large chunk of the IBS too...attached with... another paper worth a look).

The new MAP Test
Companion diagnostic for the vaccine. v good v important. Shows who needs to be treated and how they respond. Will go into HVL.
Currently in the final stage development here by me and 1 v. good lab worker (who has been on a building site for 3 months with the work
stopped as the funding had run out. Just back yesterday thanks to a $50K donation from the father of a 13yr CD daughter in the US, and my own lovely daughter running in a marathon collected £10K). 3 grant applications in 2012/3 rejected by 'peer review' essentially as the gastros think it is all rubbish.
Funding has to be independent. What  does it need?
About £80K to get all the reagents done, validated and ready to go clinical...10 months.
Clinical validation £300K over 2 years running parallel with the vaccine so it does not take more time._

*What I have proposed to the professor is to start a crowd-sourcing kickstarter esq fundraising effort regarding his MAP diagnostic. Currently you cannot get accurately tested for the MAP bacteria. The professor has a method to clinically test for it, but he needs funding to make it affordable/streamlined for the publics accessibility. The QUESTION i ask to the members of this forum is this 
- If you could get a test done which says you have a rampant MAP infection in your gut, would you then be interested in investing in the vaccine? and How much would you pledge to have the test done in the first place? *


----------



## rollinstone

I'm not very rich but I would pledge 500-800 dollars.


----------



## william4

I would certainly pledge $500


----------



## Malgrave

My son's biopsies have often shown epitheloid granulomas with necrosis and last year the doctors decided to do PCR reaction test and found some sort of mycobacterium. Then they tried to culture it but the result was negative. I still believe that with the right test they might have been able to diagnose MAP infection. 

For Happy Poo Poo's question I would thus say definitely yes! And would be willing to pledge one month's salary or so, at least.


----------



## HelenMelb

I would also pledge a month's salary. The amounts mentioned by Prof HT (£80k and £300k for the next stage) are achievable! I know of other people who have children and grandchildren with Crohn's who would definitely be interested in making a pledge.


----------



## sir.clausin

I saw this ...

I really hope this is the truth, I can´t stand this disease any longer, I am loosing my job, family over it.


----------



## Bmwife

Yes, I wouldn't be able to give much but would be more than happy to give a donation. I want my happy healthy husband back.


----------



## electrichead

sir.clausin said:


> I saw this ...
> 
> I really hope this is the truth, I can´t stand this disease any longer, I am loosing my job, family over it.


Unfortunately we can't post links were they ask for money :/


----------



## electrichead

Everybody PLEASE go to the "Run for Crohn's" facebook page


----------



## AJC - Australia

very good everyone!!! 
the next step here is to start this crowd sourcing campaign!
I have been communicating with professor hermon-taylor and any relevant communication I will put on here, for now - but i hope soon we will be able to point people to a page with a short video and information about his work - with easy steps in place to contribute towards his mission for the MAP vaccine. 
cheers


----------



## Malgrave

The video is an excellent idea!!!


----------



## sir.clausin

Morning!

I am going to speak with Amy today, the professors daughter, over the phone. I am all in for this. Do you guys have any specific questions that I could bring with me?


----------



## Malgrave

Just quick thoughts:
- the vaccine for cows: state-of-play? is it completely ready? 
- the test to find MAP bacteria: would it be possible for someone e.g. from this forum to have it done? If yes, how? (See Happy Poo Poo's earlier question: would you be ready to invest if the test showed that you have it?). The positive test result might attract more investors...
- have they applied for funding from the EU research programmes?


----------



## AJC - Australia

http://www.abc.net.au/site-archive/rural/content/2013/s3682553.htm

Worth reading….from Australia. 
It is an antibiotic treatment heading to human trial in the US….backed by a company from Israel. 
This is not the same as the vaccine by Hermon-Taylor, but it is in the same genre ie MAP and treating MAP.


----------



## sir.clausin

Hey guys!

Ok, so I spoke to Amy over the phone, the professors daughter,  yesterday....very interesting indeed. I am joining the team to work for the vaccine to come out and spread the information. 

Can everyone who is interested in helping out please pm me. I know happy poo poo have a dialog with John already. I asked about the crowdfunding btw. and eventhough they think its a good idea, Amy and John think it´s going to take too long. John is actually going to apply for foundings, can´t remember from where but he is.

It would be nice to talkt to those of you who wants to help over Skype to exchange ideas etc.


----------



## durwardian

Can you setup a paypal donation site for the group to help drive people to?


----------



## Igor_Passau

I am with you. 
Pls aks in what country clinical trial could be made more "simplified", without burocrasity!


----------



## Igor_Passau

I have information that some clinical services can be offered in Mexico! It could more easy  if we could arrange medical services in neutral zone!


----------



## durwardian

I would bet there are plenty of volunteers


----------



## Igor_Passau

In September 2013 RedHill initiated a first Phase III clinical trial with RHB-104 for Crohn’s Disease in North America and Israel. A second Phase III trial, in Europe, is planned to commence in the first half of 2014. 

RedHill further acquired an exclusive license from the University of Central Florida Research Foundation, Inc. to a patent-protected diagnostic test for the detection of MAP (Mycobacterium avium paratuberculosis) bacterium, and is developing the diagnostic test with Quest Diagnostics.

http://www.redhillbio.com/product-pipeline/rhb-104/


----------



## Igor_Passau

240 subjects will be randomized into the MAP US Study across up to 50 sites in the U.S., Canada and Israel. The primary endpoint for this study is the state of remission at week 26 in subjects randomized to receive RHB-104, as compared to subjects randomized to receive placebo. Secondary and exploratory endpoints will include, among others, state of response at 26 weeks, maintenance of remission through week 52 and efficacy outcome measures in relation to presence of MAP (Mycobacterium avium paratuberculosis) bacterial infection. The study is exploratory with respect to the clinical validation of the Company's proprietary Polymerase Chain Reaction (PCR) assay used to detect MAP, the initial development of which was recently completed by Quest Diagnostics. An appropriate regulatory path for the validation and approval of the assay is currently being explored by the Company.

http://www.cnbc.com/id/100358771/Re..._on_RHB104_for_Treatment_of_Crohn039s_Disease


----------



## durwardian

Igor_Passau said:


> In September 2013 RedHill initiated a first Phase III clinical trial with RHB-104 for Crohn’s Disease in North America and Israel. A second Phase III trial, in Europe, is planned to commence in the first half of 2014.
> 
> RedHill further acquired an exclusive license from the University of Central Florida Research Foundation, Inc. to a patent-protected diagnostic test for the detection of MAP (Mycobacterium avium paratuberculosis) bacterium, and is developing the diagnostic test with Quest Diagnostics.
> 
> http://www.redhillbio.com/product-pipeline/rhb-104/


So there is a test for it, and a vaccine, different sides of the coin?


----------



## Igor_Passau

as I was posted for the 1 phase of the clinical trial ( on the people) you need about 10 -20 volunteers. But we need the criteria like age, etc. and restriction


----------



## DamnitCrohns

durwardian said:


> So there is a test for it, and a vaccine, different sides of the coin?


RedHill have their own treatment aimed at MAP as well, it's the 3 pronged antibiotic treatment created by Dr Borody that you may have heard of. i was unaware of the RedHill diagnostic test though, it'd be interesting to know how it compares to the one being created by Dr Hermon-Taylor.

It seems RedHill is doing better in the way of funding etc though. It's really frustrating watching this all unfold - in a way I wish i wasn't even aware of all of this research, knowing that there are treatments in the process of being developed but having no access to them is useless to me right now. Even if they work, it will be years before we can have access to them.


----------



## durwardian

Have you heard of the online sites where you can sign up to be a trial? Kind of scary, but a great thing if you are suffering and this could save you.


----------



## JMC

I got a reply from my Prof:

Me: This story (MAP vaccine) appeared in the press recently and is getting a lot of attention from Crohn’s sufferers in on-line forums.  I believe I have spoken to you before about whether you thought MAP was the root cause of Crohn’s and you said no.  Is that still your view?  

Prof: Thanks.  My view is unchanged (as is that of most other gastroenterologists), but would be more easily amplified by talking than by typing!  If you'd like to give me a ring, I'd be happy to have a chat tomorrow.  _*What we need to see are the results of a clinical trial*_......


----------



## AJC - Australia

Some people have MAP and dont get Crohns…….so, his vaccine works towards allowing someone with Crohns to get their immune system making the 'hunter cells' that can go and kill the MAP bacteria. People with crohns have an odd immune response to the bacteria i guess, while healthy people don't?


----------



## electrichead

happy poo poo said:


> Some people have MAP and dont get Crohns…….so, his vaccine works towards allowing someone with Crohns to get their immune system making the 'hunter cells' that can go and kill the MAP bacteria. People with crohns have an odd immune response to the bacteria i guess, while healthy people don't?



No, according to Herman-Taylors new test ALL people with Crohns are infected with MAP. Previous tests just weren't effective enough. MAP is a difficult bacterium to test/cultivate.


----------



## AJC - Australia

Sorry Electrichead….

read again…

some people have MAP, but dont get Crohns…..ie healthy people. 

cheers


----------



## kiny

The rational behind selective susceptibility comes from the immune deficiency present in people with crohn's disease. "We" have considerable deficiencies of the innate immune system which would leave us vulnerable to intracellular pathogens. 

Healthy people have no issues clearing MAP from macrophages, people with crohn's disease do:
https://www.ecco-ibd.eu/publications/congress-abstract-s/abstracts-2013/item/p045-mycobacterium-avium-subsp-paratuberculosis-survival-in-macrophages-from-inflammatory-bowel-disease-patients-2.html

(doesn't mean MAP is therefore directly involved in the disease, they find more MAP in some (not all) ppl with CD, and the reason is probably because people with CD have issues clearing the bacteria)

Personally I don't think everyone with CD would have a MAP infection, simply because people with immune deficiencies tend to not all get the same infections. HIV patients are very susceptible to multiple different mycobacteria for example (interestingly, they have low rates of crohn's disease). I did get tested for MAP specifically with a DNA test and culture (which takes months and multiple reading over a time period of 3 then 6 months, then a year), which both turned out negative, but as ppl mentioned, tests are not accurate, and testing blood isn't as ideal as being able to test tissue.

The interest in MAP is justified I feel, because:
A: it's in the human food chain
B: it causes disease in many animals, including non-human primates
C: it's a mycobacteria and almost all mycobacteria cause disease


----------



## Igor_Passau

so what?


----------



## JMC

kiny said:


> The interest in MAP is justified I feel, because:
> A: it's in the human food chain
> B: it causes disease in many animals, including non-human primates
> C: it's a mycobacteria and almost all mycobacteria cause disease


One question that I have not been able to find an answer to.  How was the relationship between MAP and Johne's disease established in cattle and other animals and why is it apparently more difficult to establish the relationship between MAP and Crohns (if there is one) in humans?


----------



## kiny

JMC said:


> One question that I have not been able to find an answer to.  How was the relationship between MAP and Johne's disease established in cattle and other animals and why is it apparently more difficult to establish the relationship between MAP and Crohns (if there is one) in humans?


In cattle it affects the whole herd, the cow's feces is filled with MAP, when calves are born then tend to come into contact with feces, which is how they keep reinfecting each other. It is easy to find a pattern in a herd.

The reason farmers don't like MAP, is not because it's a potential human health threat, it wipes out their herd.

You're also only looking for one species in cows, bovine MAP. What MAP's role is in humans isn't clear, there is a relationship between E Coli and MAP too and while MAP in humans is similar to bovine MAP, it's harder to test humans, you can't test soil, you might have a disseminated bacteria, not readily found in feces like in cows, etc.

It's also a money issue, cows cost money, farmers don't want to lose their cow, there are a ton of labs that can test cows for MAP....humans are just well...humans. One more person with crohn's disease or less, doesn't bother the farmer's industry.

The farmer's industry has been incredibly unsympathetic to people with crohn's disese, they know full well there is a chance MAP is involved in crohn's disesase, and they do everything they can to keep a lid on it.


----------



## AJC - Australia

the good news is that Dr Hermon-Taylor has developed a clinical diagnostic test that can test people for MAP. He just needs funding. You can pledge and donate if you google his daughters justgiving webpage called 'run for crohns' …she is a doctor herself and she is running the London Marathon on April 13th to raise money for the MAP diagnostic test.


----------



## sashaz

I can't understand why large drug companies aren't snapping this up. Makes me think the research or vaccine or something is flawed.


----------



## HelenMelb

It might have something to do with the fact that if it works, it will cure Crohn's disease. It is two vaccines only-not a lifelong treatment that you have to keep taking in order to be well (such as Remicade, Humira, etc.) So how much profit can be made from two injections per person with Crohn's? I would imagine drug companies may consider it is not worth the gamble and the expense of the trials. Scientists and researchers are interested in what works, drug companies are interested in how many units of a particular drug they can sell (and please excuse my cynicism:smile


----------



## lbligh

Our family made a donation to Dr. Hermon-Taylor. We feel his work deserves funding to completion and has been denied funding due to pressure from the beef, milk, and pharmaceutical industries.


----------



## JMC

lbligh said:


> We feel his work deserves funding to completion and has been denied funding due to pressure from the beef, milk, and pharmaceutical industries.


Is there really any proof of that?


----------



## JMC

HelenMelb said:


> It might have something to do with the fact that if it works, it will cure Crohn's disease. It is two vaccines only-not a lifelong treatment that you have to keep taking in order to be well (such as Remicade, Humira, etc.) So how much profit can be made from two injections per person with Crohn's? I would imagine drug companies may consider it is not worth the gamble and the expense of the trials. Scientists and researchers are interested in what works, drug companies are interested in how many units of a particular drug they can sell (and please excuse my cynicism:smile


If that is an accurate view of how drug companies really operate (and I cannot comment as I do not have any direct experience) then there clearly is a huge need for crowd sourced funding where the driving force is improving people's health, not profits.


----------



## JMC

sashaz said:


> I can't understand why large drug companies aren't snapping this up. Makes me think the research or vaccine or something is flawed.


It's not the views of the drug companies that make me question whether this research is flawed but the majority of gastroenterologists who do not think it is correct.  Obviously it is quite possible with significant breakthroughs for there to be a lone voice standing against the majority.  I really do hope Prof Hermon-Taylor is correct mostly because I do not see any other theory or cure being proposed that will come to fruition in the next few years.

I asked Prof Hermon-Taylor a few direct questions:

Why is there scepticism in the medical profession that MAP is the cause of Crohns?  
And why have your requests for funding been rejected?

Here are his answers:
*1. Why the scepticism ?*
A mixture of reasons from 'there always is'....to the main problem (to date) of there not being a simple
clinical test for MAP in humans. Existing tests are complex and depend critically on the methods used to extract MAP DNA.
If they are not done correctly you get a false negative, conflicting data, controversy and confusion.
Failure to understand the complexity of MAP and how it so often does the opposite of what would be expected.

*2. Peer review.....'opinion leaders' who are unaware of the strength of the positive evidence from multiple sources.*

Even so we got BBSRC support after nearly a year's scrutiny, for a 3 year trial of the vaccine in cattle finishing in spring 2013..
The vaccine gave stunning results with no side effects....clearing MAP from blood, abolish faecal shedding, cleaned up the gut....
If it does the same in CD (highly likely) it will turn it on its head. The vaccine would not exist but for the Crohn's community.


----------



## Malgrave

This broke my heart (from Run for Crohns website):

...

Where do I come in?...

This research is close to my heart for another reason; it is the culmination of the life's work of my father, Professor John Hermon-Taylor, a Professor of Surgery, Molecular Scientist and internationally renowned Crohn's Disease expert. My father has worked full-time UNPAID since his 'retirement' 11 years ago to develop this vaccine. He has quietly, resolutely pursued this goal despite the constant threat of research funds running out, despite opposition to his work from political enemies and despite cancer and heart disease.

And not for money or for personal glory but for an unspoken promise -to every Crohn’s patient he has cared for and to individuals from across the world suffering with Crohn's who contact him for help -that he will make this happen for THEM. They are willing him to succeed for their sakes.

Sadly, MAP research is not supported by the government or major Crohn's charities. I cannot understand why; 30 years of evidence just cannot be ignored. True, until we have a trial in humans, we will not know if the Vaccine will work as well as it promises. But who in their right mind would not want that question answered?!

As a doctor and as a daughter, I am not willing to stand by and let something with so much promise, which could help so many people, fall by the wayside.

...


----------



## JMC

Malgrave said:


> Sadly, MAP research is not supported by the government or major Crohn's charities.


This can sound very emotive, but let's be specific about this and rather than get upset about it take some action...

Which governments have been asked to fund it and refused and why?  We need the name of the minister or department which made the decision so we can lobby.
What are the main Crohn's charities which provide research funding?  Which ones have refused and what reason was given.  Again, we need to get the names of the people who made the decision and lobby them.


----------



## AJC - Australia

*Lets not forget*, all the gastros laughed off Dr Barry Marshall and Dr Robin Warren when they proposed that stomach ulcers were caused by a bacteria (Helicobacter pylori). I believe one of the doctors actually infected himself, got diagnosed with a stomach ulcer and cured himself before the _skeptics_ would believe him.

The gastros dont want to accept Crohns could be caused by a pathogen.


----------



## Garbanzo

Malgrave said:


> This broke my heart (from Run for Crohns website):
> 
> ...
> 
> Where do I come in?...
> 
> This research is close to my heart for another reason; it is the culmination of the life's work of my father, Professor John Hermon-Taylor, a Professor of Surgery, Molecular Scientist and internationally renowned Crohn's Disease expert. My father has worked full-time UNPAID since his 'retirement' 11 years ago to develop this vaccine. He has quietly, resolutely pursued this goal despite the constant threat of research funds running out, despite opposition to his work from political enemies and despite cancer and heart disease.
> 
> And not for money or for personal glory but for an unspoken promise -to every Crohn’s patient he has cared for and to individuals from across the world suffering with Crohn's who contact him for help -that he will make this happen for THEM. They are willing him to succeed for their sakes.
> 
> Sadly, MAP research is not supported by the government or major Crohn's charities. I cannot understand why; 30 years of evidence just cannot be ignored. True, until we have a trial in humans, we will not know if the Vaccine will work as well as it promises. But who in their right mind would not want that question answered?!
> 
> As a doctor and as a daughter, I am not willing to stand by and let something with so much promise, which could help so many people, fall by the wayside.
> 
> ...


Can someone post an authentic link to make donations to??


----------



## DamnitCrohns

Garbanzo said:


> Can someone post an authentic link to make donations to??


It's against forum rules for us to post links to sites that ask for money (Which is frustrating since that happens to be the best place to get info about the vaccine as well..).

To find it just search 'amy hermon taylor run for crohns just giving' and it'll surely come up as one of the first few pages. It's a justgiving.com site.


----------



## Garbanzo

DamnitCrohns said:


> It's against forum rules for us to post links to sites that ask for money (Which is frustrating since that happens to be the best place to get info about the vaccine as well..).
> 
> To find it just search 'amy hermon taylor run for crohns just giving' and it'll surely come up as one of the first few pages. It's a justgiving.com site.


Ok I understand, but I'm down to a charity run etc.


----------



## DamnitCrohns

Garbanzo said:


> Ok I understand, but I'm down to a charity run etc.


Yeah, it was originally set up as amy running to get donations but now it's the best place to send donations. (Confirmed by amy on facebook). I realise it's confusing, I believe they're in the process of setting something more clear up.


----------



## AJC - Australia

they are….a new website, the whole bit. 
paypal etc.
coming soon!


----------



## AJC - Australia

I think this is a very worthy movement in Crohns….


----------



## electrichead

happy poo poo said:


> *Lets not forget*, all the gastros laughed off Dr Barry Marshall and Dr Robin Warren when they proposed that stomach ulcers were caused by a bacteria (Helicobacter pylori). I believe one of the doctors actually infected himself, got diagnosed with a stomach ulcer and cured himself before the _skeptics_ would believe him.
> 
> The gastros dont want to accept Crohns could be caused by a pathogen.


I think they genuinely don't believe it because in the past (before Prof JHT) there wasn't enough evidence for it, so they need kind of need an extra push!
Also, interestingly, those doctors who made the discovery about helicobacter pylori went on to win the nobel prize for medicine! I don't know about anybody else, but I think if Prof JHT's vaccine works he should be in line for it!


----------



## lbligh

I completely agree. 

My husband and I are new to the world of Crohn's because our teenaged daughter was only diagnosed in December. My husband is a professional researcher and has focused most of his attention on IBD since that time. We are shocked and astonished to find that so little can be done for people with Crohn's, that the number of cases has skyrocketed over the past few decades, and that promising treatments are not pursued because they would not result in gigantic profits for pharmaceutical companies.

Dr. Crohn himself suspected the MAP bacterium was the cause of the disease that now bears his name. At that time it was not possible to test for the bacterium but modern medical techniques have changed that. Cattle known to be infected with MAP have intestines that look just like those of humans with Crohn's, and nothing else looks like it. MAP is definitely present in a high percentage of dairy cows. It is well established that animal infections can be transmitted to humans. It has been proved that MAP can survive milk pasteurization. How can we NOT support Dr. Hermon-Taylor's work to its completion?

I'm going to post that on the Facebook page right now. We already made a financial contribution to Dr. H-T's project. I urge you to help spread the word.


----------



## kiny

there are reasonable arguments against the MAP theory too, one is detection rates, second is the Australian  antibiotics trial that did not keep ppl in remission, you can't ignore these arguments I feel, a lot of studies have found MAP by PCR in people with CD, A LOT did not

this is a good rebuttal to those type of arguments:

http://www.youtube.com/watch?v=FoVpiFKwa9A

you can go back and forth like this for years while ppl suffer, yes or no, ppl deserve an answer

ppl have been arguing if MAP is involved in crohn's disease for over a century now

.

like that video also shows and why i strongly disagreed with Xiafo, is the argument that use of immunosuppressants is an indication that an infection isn't involved, iimmunosuppressants are often used for infections, how weird it might seem at first, often times stopping the inflammation is far more important that controling the infeciton, it's not a reasonable argument, imuran, steroids, TNF-alpha blockers, they have all been used for infections, in fact many immunosuppressants were desinged to treat infections

when the immune system is not capable of removing the offending antigen, the inflammation becomes chronic, and the inflammation is often very destructive, which is why you want to both control the inflammation and the infection at the same time


all this results in back and forth arguments, people who refuse to look at UC and Crohn's disease as seperate diseases,some GI who should be impartial giving opinions on mycobacteria they know nothing about,  the dairy industry who stands to lose millions the more this issue is talked about, etc, I hope we have an answer soon


I also want GI to stay out of these arguments. They are not immunologists or infection specialists, it only muddies the water and sets people with crohn's disease back instead of helping them.


----------



## blinkz

kiny said:


> there are reasonable arguments against the MAP theory too, one is detection rates, second is the Australian  antibiotics trial that did not keep ppl in remission, you can't ignore these arguments I feel, a lot of studies have found MAP by PCR in people with CD, A LOT did not
> .


Out of curiosity... What if MAP is one of many different irritants tgat initiate what we know as Crohns disease? What I'm trying to get at is that many different intestinal diseases show crohns like symptoms like intestinal tb. Could it be possible that MAP triggers Crohn's symptoms while AIEC causes it for others and etc? I wondering if anti MAP treatment may be effective for a subset of Crohns patients.


----------



## lbligh

That's perfectly plausible. 

We all know that certain treatments work better for some people than for others. It seems to me that Crohn's is quite possibly an intestinal condition, rather than a disease that comes from only one source. Like a rash you might have on your hand. Your rash could be from poison ivy, or another skin irritant, or from getting way too much sun, or a whole lot of mosquito bites, or a reaction to a medicine you took, or excema, or a bunch of other things. You can sooth the rash in a variety of ways, but none of that soothing will cure the rash and keep it from coming back.

Even if a MAP vaccine would be a cure for only 20% of IBD cases, it would be well worth the development expense. Think of the cost of all those intestinal surgeries, scopes, scans, and drugs like Remicade. Think of the people who can't hold a job because they keep getting sick. Think of all the pain and suffering.

I can't figure out why this Vaccine hasn't been funded to completion.


----------



## AJC - Australia

Ibligh, welcome to the land of the believers in MAP theory. 
I hope you have liked the facebook page….see the link higher up on this page, from me..

_
If the vaccine works it will prove irrefutably that MAP causes Crohn's... and that would lead to some very awkward questions being asked about why, despite earlier warnings, the public had continued to be exposed to a disease-causing pathogen in the food-chain. Another milk scandal wouldn’t look good for the dairy industry. But then this is very short-sighted as it wouldn’t end in the feared apocalyptic scenario of mass culling etc because the vaccine presents the solution to that very problem; vaccinate diseased animals to prevent MAP entering the food chain._

The best thing we can do is rally the believers into an army…i think that facebook page is a good way to do it….so, go join and lets all get behind his daugher Amy who is running the London marathon April 13th, raising money for the MAP diagnostic.


----------



## AJC - Australia

posting this again, because I believe it is the best way for everyone on this thread to stay tuned to what Dr Hermon Taylor is doing….the page is run by his daughter (also a doctor) and I think we should all be sharing it with our 'facebook friends'...


----------



## Malgrave

Happy poo poo: your latest link is broken...


----------



## Malgrave

I totally agree with you Ibligh and others, we should all spread the word!

One way would be that we advertise the facebook site and this thread in the various discussion forums, also outside English speaking forums. I have done it already in two other, non-English, IBD related discussions forums and I plan to look for new forums as well. We should make people understand that even a small donation counts. There are millions of IBDers around the world so collecting £100,000 and even more shouldn't be impossible!


----------



## AJC - Australia

right on Malgrave!
I am of the same mindset and doing everything I can with my 'reach' to get the news into the right hands…there are countless facebook pages devoted to crohns, crohns forums, associations, websites, blogs - i am pestering as many as I can!
go hard!

this was good watching too. Thanks IBLIGH. 

https://www.youtube.com/watch?v=2a7xVgzbA4Y

Try that *facebook* link again, i think it works now???


----------



## AJC - Australia

google '*run for crohns just giving*' to go to the page where you can support + donate to this inspiring cause.  I would put the weblink on here but apparently that is not allowed on this forum.


----------



## kiny

blinkz said:


> Out of curiosity... What if MAP is one of many different irritants tgat initiate what we know as Crohns disease? What I'm trying to get at is that many different intestinal diseases show crohns like symptoms like intestinal tb. Could it be possible that MAP triggers Crohn's symptoms while AIEC causes it for others and etc? I wondering if anti MAP treatment may be effective for a subset of Crohns patients.


RIght, if the issue is an innate immune defect of macrophage function, you would expect there to be multiple offenders. 

There is a conection betwen E Coli and MAP, because of the mannose that gets released.

I also don't rule out MAP and posted many studies about it, because  people mention H Pyroli....this happend with crohn's disease too.

In 1978, over 30 years ago, they discovered antibodies to E Coli in CD patients. They ignored this evidence for decades, and I'll quote the article, which is really dismissive:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1411820/

_"There was no correlation between the number of Escherichia coli agglutinins and the site and severity of the disease or type of therapy. It is suggested that the presence of the high numbers of Escherichia coli antibodies is secondary to the disease process and is unlikely to be causally involved in the pathogenesis of the disease"_


Long after that study they started to find E Coli DNA within the granuloma of active lesions in ppl with CD, and now they have isolated live  bacteria from people with ileal CD, LF82, invasive E Coli, or commonly referred to as AIEC now.

E Coli needs a specific entrance point to enter tissue, it can't do it through the colon, they suspect it's capable of entering the small intestine, and it does this by entering M Cells, they're part of the peyer's patches, they line the small intestine. But it took years before ppl started taking E Coli study serious, and many still don't.

That's why I think it's good that people keep looking into all possibilities.


----------



## electrichead

kiny said:


> RIght, if the issue is an innate immune defect of macrophage function, you would expect there to be multiple offenders.
> 
> There is a conection betwen E Coli and MAP, because of the mannose that gets released.
> 
> I also don't rule out MAP and posted many studies about it, because  people mention H Pyroli....this happend with crohn's disease too.
> 
> In 1978, over 30 years ago, they discovered antibodies to E Coli in CD patients. They ignored this evidence for decades, and I'll quote the article, which is really dismissive:
> 
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1411820/
> 
> _"There was no correlation between the number of Escherichia coli agglutinins and the site and severity of the disease or type of therapy. It is suggested that the presence of the high numbers of Escherichia coli antibodies is secondary to the disease process and is unlikely to be causally involved in the pathogenesis of the disease"_
> 
> 
> Long after that study they started to find E Coli DNA within the granuloma of active lesions in ppl with CD, and now they have isolated live  bacteria from people with ileal CD, LF82, invasive E Coli, or commonly referred to as AIEC now.
> 
> E Coli needs a specific entrance point to enter tissue, it can't do it through the colon, they suspect it's capable of entering the small intestine, and it does this by entering M Cells, they're part of the peyer's patches, they line the small intestine. But it took years before ppl started taking E Coli study serious, and many still don't.
> 
> That's why I think it's good that people keep looking into all possibilities.



I totally agree with everything you are saying, but the trials carried out on cattle that had Crohn's/Johne's showed that all of them had MAP. When the anti-map vaccine was given to them, their symptoms were reversed and when tested for MAP post-mortem none had MAP any more. 
But again, I understand what you mean in looking at both the pro's and con's of the theory.


----------



## JMC

electrichead said:


> I totally agree with everything you are saying, but the trials carried out on cattle that had Crohn's/Johne's showed that all of them had MAP.


It is important to remember the connection between Johne's and MAP is well established, the connection between Crohn's and MAP is not. 



electrichead said:


> When the anti-map vaccine was given to them, their symptoms were reversed and when tested for MAP post-mortem none had MAP any more.
> But again, I understand what you mean in looking at both the pro's and con's of the theory.


Lucky cows  

Has this research proving the effectiveness of the vaccine been published in a refereed journal and are there any further trials being undertaken?


----------



## AJC - Australia

Hermon-Taylor's vaccine trial in COWS is going to be published soon, ie in 2014. Long story short, with *mice*: Conclusion: Highly effective at stimulating the immune system to eradicate/protect against MAP WITHOUT any adverse effect.

Subsequent to this, a trial was carried out in cattle (completed and findings pending publication -due out in the first quarter of 2014)... essentially finding are the same... IT WORKS, NO ADVERSE EFFECTS.

I have the published data on the safety and efficacy of the Vaccine in mice. It is a 1MB pdf file and is in 'doctor speak' if anyone wants to TRY and read it go here 
http://www.scribd.com/doc/22178192/A-Novel-Multi-Antigen-Virally-Vectored-Vaccine-against-Mycobacterium-avium-Subspecies-paratuberculosis

We should all be on the facebook page though - that is where the community can get behind this theory and tell vaccine.


----------



## JMC

happy poo poo said:


> Hermon-Taylor's vaccine trial in COWS is going to be published soon, ie in 2014. Long story short, with *mice*: Conclusion: Highly effective at stimulating the immune system to eradicate/protect against MAP WITHOUT any adverse effect.
> 
> Subsequent to this, a trial was carried out in cattle (completed and findings pending publication -due out in the first quarter of 2014)... essentially finding are the same... IT WORKS, NO ADVERSE EFFECTS.


Based on the progress so far, there is a good chance Hermon-Taylor will develop a vaccine which will rid humans of MAP.  Then the really interesting test will start, determining whether MAP is the cause of Crohn's.

I have thought about this a lot over the last few weeks and I think the research is worth funding even if it proves that MAP is _*not *_the cause of Crohns.  If you get comfortable with that thought, that it might not be a cure, but moves the science forward, how much money are you willing to give?  Surely, we could raise the £100k in a matter of days if people were willing to put in £100 to £1000 each to get that question answered.


----------



## lbligh

Exactly. The MAP theory has been around ever since Dr. Crohn's time, and it really needs to be confirmed or discredited.


----------



## JMC

Ok I have been on Twitter tonight promoting the Facebook MAP page with every celeb I can think of with Crohns or UC. Fingers crossed it gets the money flowing.


----------



## lbligh

What celebs have Crohn's?


----------



## AJC - Australia

right on JMC!
That is where we are at - we need to rally together and get this proven or disproven.
Personally, if a doctor can prove that I have a MAP infection in my gut, i would want to try and get rid of it. That is step one, develop a test to determine is a patient has a MAP infection….that is what Dr Hermon Taylor is trying to raise 100, 000 pounds for. A definitive diagnostic test. That would then lead to human trial for his vaccine, which currently 'sits in the freezer' in his lab having worked on mice and cattle.


----------



## Malgrave

Like I've said before I would be willing to donate  a month's salary to this, even more if I could get my son tested with this test!

I am happy to hear that so much advertising has been already done for the fb sites. But what do you think about the contents of those sites? I think it is quite narrow at the moment. If we wish people who visit the sites for the first time to take it seriously, more content is definitely needed, links to the articles, videos, etc. Is there somebody really working on this?


----------



## JMC

Malgrave said:


> Like I've said before I would be willing to donate  a month's salary to this, even more if I could get my son tested with this test!


Why not ask the Prof directly how much it would cost to test 1 person?  I would also be interested in doing this and I have the advantage of living only a few miles away from the hospital where he does his research.



Malgrave said:


> I am happy to hear that so much advertising has been already done for the fb sites. But what do you think about the contents of those sites? I think it is quite narrow at the moment. If we wish people who visit the sites for the first time to take it seriously, more content is definitely needed, links to the articles, videos, etc. Is there somebody really working on this?


I think it could be improved a lot.  I would be happy to volunteer my time and experience to help.  I will write to the Prof tonight suggesting that we form a team of volunteers.

Personally, I would like to see a project plan of what he wants to do over the next few years, who is involved (skills needed) and what it will cost.  I think that would help focus people's minds and efforts.


----------



## Malgrave

Hmm… I was just thinking the same right after I sent my previous reply...
Would it indeed be possible to promote the fund raising so that every person donating e.g. £500 or more will have a free test during the development or right after the test is ready?
Does anybody know if the test will be based on a blood sample or something else? If it's based on blood sample would it be feasible to offer this kind of possibility to the donors?
If this was possible (even if it required travelling to London), they might be able to collect easily £100,000, maybe even to fund the whole project until the final completion…


----------



## Malgrave

Excellent ideas JMC!
I would be interested to volunteer also, depending on the skills needed and my physical resources of course. At the moment my son is so sick that I am ready to do anything I can, on the other hand sometimes the disease is so overwhelming that I cannot do anything but take care of him. But I guess this is how it is for most of us struggling with this disease!


----------



## Bmwife

lbligh said:


> What celebs have Crohn's?


Dynamo apprantly


----------



## Malgrave

I found these lists:

http://ibdcrohns.about.com/od/guesswhohasibd/

http://en.wikipedia.org/wiki/List_of_people_diagnosed_with_Crohn's_disease


----------



## JMC

Bmwife said:


> Dynamo apprantly


Yes, I tweeted Dynamo and Frank Fritz from American Pickers and a number of other people, many of whom have UC


----------



## JMC

happy poo poo said:


> JMC and Malgrave.
> Firstly, i think the Prof has had enough emails from people asking him what is happening!? We all ask him similar questions and he must be tired of replying the same answers...I have several emails here from him and can answer the questions if you voice them on this thread


Did you mean that to sound so patronising?


----------



## lbligh

I'm sure he did not. It is very difficult to gauge tone in an on-line post, particularly when someone is trying to be informal.


----------



## JMC

happy poo poo said:


> Does anyone know the Dynamo bloke in England??? He seems like a nice fella. I might write to his manager.


He is on Twitter and retweets quite a lot of Crohn's related messages.  I tweeted him last night, I suggest other people do the same.  Here is what I sent out:

@Dynamomagician a potential cure for Crohns, now that would be magic! Please support: ...


----------



## greypup

Last week, I asked my daughter's ped GI what was going on with the MAP theory and she said nothing.

Is there any info that I can forward to her?  Or keep in my file when we meet with her next?

TY.


----------



## JMC

greypup said:


> Last week, I asked my daughter's ped GI what was going on with the MAP theory and she said nothing.


From my perspective, working in IT and previously in research, one thing that really concerns me about the gastroenterologists I have spoken to is how disconnected and uninformed they have been.  When I am informing them about progress on MAP via an article published in the Daily Mail, you know there is a problem!


----------



## lbligh

The pediatric GIs are the worst, they are very "by the book" with the holy triangle of pentasa, 6MP, and remicade (and the similar drugs). We brought up MAP and were treated to a condescending dismissal.


----------



## greypup

That's been my experience as well.  Anything that is up and coming like fecal transplants, MAP, FODMAP, etc are all dismissed every time I want to discuss.  

I like to go into the office with journal articles at least to get the doc's attention.


----------



## william4

lbligh said:


> The pediatric GIs are the worst, they are very "by the book" with the holy triangle of pentasa, 6MP, and remicade (and the similar drugs). We brought up MAP and were treated to a condescending dismissal.


same here, we deal with stony brook university , in new York, a supposedly state of the art research hosp., I get the same thing, mostly shoulder shrugs, I feel all we get is the standard punch list protocol, that  I could get anywhere else


----------



## AJC - Australia

JMC - no way am i trying to be patronising…sorry it came across that way. 

stay stoked


----------



## n00b

I know the Manchester United star Darren Fletcher has been through a rough time with UC.

I don't do crapb00k but surely it is worth somebody trying to inform him.  Sure he could help both financially and getting the word out


----------



## Mattie

Rick Parfitt Jnr, son of the Status Quo guitarist has Crohns and talks about it openly. He has his own money raising and information gathering foundation - JPR Crohns Foundation -  which has its own website.


----------



## Mattie

Sorry, that should read RPJ Crohns Foundation. My mistake.


----------



## Malgrave

There seems to be many stories about her disease in the UK magazines. I don't know what kind of celeb she is but still:

http://www.ok.co.uk/celebrity-news/...ty-tv-as-she-plans-crohns-disease-documentary


----------



## JMC

Malgrave said:


> There seems to be many stories about her disease in the UK magazines. I don't know what kind of celeb she is but still:
> 
> http://www.ok.co.uk/celebrity-news/...ty-tv-as-she-plans-crohns-disease-documentary


She is a "star", and I say that having honestly never watched the programme, of TOWIE - The Only Way Is Essex, pretty close to the bottom of the barrel then, though can't complain if she highlights the plight of people with Crohns.


----------



## sashaz

I hate towie with a passion BUT I feel for her and if she can publicise Crohn's then I wish her all the best.


----------



## AJC - Australia

Malgrave said:


> There seems to be many stories about her disease in the UK magazines. I don't know what kind of celeb she is but still:
> 
> http://www.ok.co.uk/celebrity-news/...ty-tv-as-she-plans-crohns-disease-documentary


i wonder if someone can tweet her? She has a lot of 'followers'...


----------



## AJC - Australia

JMC, this forum could do with a like or laugh button….

come on - lets get the Essex girl.


----------



## JMC

1.2M followers, I have no idea why...:smile:


----------



## copeland

Why is CCFA not supporting this research?  They have pretty deep pockets, and the amount he's looking for (although by no means small) wouldn't be unreasonable for them, I wouldn't think.


----------



## kiny

Don't know who they are, but they are still funding microbiota research to try to map out the millions of gut flora bacteria.  I doubt the gut flora is directly involved in crohn's disease and trying to map out the microbiota will take decades, many of them are anaerobe. Research is moving on without them, current research centers around autophagy, macrophage deficiencies and opportunistic organism, it does not center around microbiota.

Research has poured billions into microbiota research, and they have accomplished nothing that has ever helped a single person with crohn's disease.

Immune research centered around immunodeficiencies has helped people with crohn's disease, we now know for example that vitamin D is involved in autophagy and control of intracellular pathogens, and we know people with low vitamin D status are more vulnerable to crohn's disease flare ups.


----------



## rollinstone

kiny said:


> Don't know who they are, but they are still funding microbiota research to try to map out the millions of gut flora bacteria.  I doubt the gut flora is directly involved in crohn's disease and trying to map out the microbiota will take decades, many of them are anaerobe. Research is moving on without them, current research centers around autophagy, macrophage deficiencies and opportunistic organism, it does not center around microbiota.
> 
> Research has poured billions into microbiota research, and they have accomplished nothing that has ever helped a single person with crohn's disease.
> 
> Immune research centered around immunodeficiencies has helped people with crohn's disease, we now know for example that vitamin D is involved in autophagy and control of intracellular pathogens, and we know people with low vitamin D status are more vulnerable to crohn's disease flare ups.


Kiny, i wouldn't say it hasn't helped 1 single person, there was a published paper in china where a man with severe fistulasing cd went into complete remission following fecal transplant using his daughters stool. I'm on my phone so I can't post a link, but that's one person who it definitely helped..


----------



## Malgrave

More celebs with IBD:

http://www.dailymail.co.uk/health/a...tml?ITO=1490&ns_mchannel=rss&ns_campaign=1490


----------



## AJC - Australia

Any volunteers out there wanting to assist their skills towards raising the awareness of the MAP vaccine? The people behind it are currently setting up a team of people, complete with a project manager!

It is all very exciting!

If you want to be a volunteer please either like their facebook page ... and drop them a message outlinging your interest. 

We can all help…we all have skills that can be useful.


----------



## AJC - Australia

Any *Americans* on this thread that want to assist in the effort to raise awareness of the MAP diagnostic test and the subsequent t-cell vaccine? 

Dr Hermon Taylor is soon to launch a website, with all the information we need to know how we can share this information to the appropriate people. We have some really good people in Australia and the UK, but could do with a couple of savvy americans.

cheers


----------



## sir.clausin

Ok, so I am now in London to meet up with John Herman Taylor and his daughter Amy.

This is going to be very very interesting and I am going to share my story with them, since I am considered a very extreme case, with rare symptoms. We will also discuss the work I can provide for them in Sweden, where I live.

Are there any questions you would like me to bring with me on Tuesday?

Thanks


----------



## HelenMelb

Wow, that's great sir clausin. Could you please ask the Professor what he thinks about antibiotic therapy for Crohn's, such as the Redhill Bio trial currently in progress? And of course, the obvious question, how long before we have his vaccine available in a trial? Many thanks!


----------



## sir.clausin

No problem, will ask that!


----------



## AJC - Australia

can you ask what he thinks of the human trial for antibiotic therapy that is happening in the USA, i think with Dr Barody and the Israeli pharmacutical company…


----------



## sir.clausin

it´s the same in which Red Hill is doing, see Helens question


----------



## lbligh

I'm very interested in the MAP test. I gather there is already a MAP test for animals, and he now has one for humans. What is the timetable for that becoming available? Is there any interest from drug companies, or are they still pushing the expensive biologicals?


----------



## JMC

sir.clausin said:


> Ok, so I am now in London to meet up with John Herman Taylor and his daughter Amy.


That is great news. I met John and Amy a couple of weeks ago and I am now doing everything I can to help support the research effort.  If you would like to join the volunteer team, just drop me a PM.


----------



## JMC

lbligh said:


> I'm very interested in the MAP test. I gather there is already a MAP test for animals, and he now has one for humans. What is the timetable for that becoming available? Is there any interest from drug companies, or are they still pushing the expensive biologicals?


Prof Hermon Taylor showed me some test results, showing the presence of MAP in humans with Crohns. The test needs further development and they need about £370k to complete it. In the coming weeks the Crohns MAP vaccine website should be up and there were will a breakdown of the remaining research work and costs. At this point, it will be possible for people to fund specific and tangible elements of the research. 

Until the website is up, the best source of information is the Facebook Crohns MAP Vaccine page. Amy has already been compiling a FAQ, so if you have specific questions just ask there.


----------



## sir.clausin

True JMC, much easier for me 

It´s going to be great to meet him though


----------



## AJC - Australia

how did it go Sir Clausin?


----------



## DamnitCrohns

Fundraising £370k seems like an enormous task. Is it assumed that once the test is developed, further research funding will be easier to get? Or will it just be more and more funding required for years and years to come?


----------



## sir.clausin

Not Tuesday yet


----------



## JMC

DamnitCrohns said:


> Fundraising £370k seems like an enormous task. Is it assumed that once the test is developed, further research funding will be easier to get? Or will it just be more and more funding required for years and years to come?


There are two separate threads of research, the MAP diagnostic test and the MAP vaccine. The diagnostic test is important because it will prove/disprove whether most Crohns patients are infected. I believe no further funding beyond the £370k will be needed. The vaccine development is a commercial venture requiring about £4M, but this is expected to be funded by an investor/drug company once the diagnostic test demonstrates wide spread infection.


----------



## Malgrave

Take a look at prof. Hermon-Taylor's message on facebook...


----------



## Jennifer

*Attention Everyone:*

Originally all links were removed from the first post in this thread because it linked to a site that requests donations. This is against forum rules and the OP understood and stopped posting links. Yet many of you in this thread have continued to post links that request donations even after the OP explained why it wasn't allowed. 

Please post the links somewhere off the site (your twitter account, Facebook, Bebo etc) or send the links in an email to your friends and family but please stop posting the fundraising links on the forum as it's against forum rules. This is a support forum first and foremost. Also keep in mind that the vast majority of people with Crohn's on the forum are having financial issues and cannot afford to give anything. Post the links elsewhere off the site.
*
*The sale of items and services are not allowed in threads, posts, signatures, or private messages. Requests for donations are not allowed in threads and posts, however you are allowed to have a short note and link in your signature about your legitimate charity. We realize this may seem uncaring but that is far from the truth. We feel such threads and posts could interfere with our cardinal rule that this is a support forum first and foremost.
http://www.crohnsforum.com[/B]/faq.php?faq=new_faq_item#faq_new_faq_item3

It's not allowed in your signature as it's not a legitimate charity. If I have to keep deleting the links from posts in this thread then the thread will be closed. Thank you for your understanding on this matter. *


----------



## JMC

Jennifer said:


> *The sale of items and services are not allowed in threads, posts, signatures, or private messages. Requests for donations are not allowed in threads and posts, however you are allowed to have a short note and link in your signature about your legitimate charity. We realize this may seem uncaring but that is far from the truth. We feel such threads and posts could interfere with our cardinal rule that this is a support forum first and foremost.
> http://www.crohnsforum.com[/B]/faq.php?faq=new_faq_item#faq_new_faq_item3


Jennifer,
Why not just delete the offending posts?  I can see lots of a discussion about a research project that needs funding, but no direct requests for funding, so it's not clear to me which ones are problematic. 



> It's not allowed in your signature as it's not a legitimate charity.


Kings College London is a university which is a legitimate charity with exempt status http://www.kcl.ac.uk/aboutkings/quality/charity.aspx


----------



## AJC - Australia

This forum RULES!!!

A great resource for everyone.

I dont think anyone is on here in an unsolicited way trying to milk money out of anyone…and I believe the reason the forum has this 'rule' is to prevent that kind of content.

I believe the reason people are posting links to facebook pages and websites that are trying to raise funds is that the people with Crohns disease who are posting those links truly believe that other people with Crohns would want to know about it and share it with any of their friends and family who HAVE money and want to see a cure for Crohns.

Dr John Hermon-Taylor is presenting a case for a cure for Crohns disease and it is my opinion that the whole community should rally behind him, yet they dont. 

I find that hard to swallow…it is almost like the crohns associations, forums, and 'industry' built up around Crohns disease would be miffed if he was right and he eradicated crohns from the world...


----------



## Jennifer

JMC said:


> Jennifer,
> Why not just delete the offending posts?  I can see lots of a discussion about a research project that needs funding, but no direct requests for funding, so it's not clear to me which ones are problematic.
> 
> 
> 
> Kings College London is a university which is a legitimate charity with exempt status http://www.kcl.ac.uk/aboutkings/quality/charity.aspx


I have been deleting the links. Problem is that a lot of the links all share different information and if you're going to donate to the University it needs to go to the appropriate place so it funds the cause not the University itself. 

I've contacted Professor John Hermon-Taylor about this issue and am waiting for a reply. Once there's an appropriate link with all the information you need then everyone can have the link along with a brief description in their signature about it.

Edit: I've edited the original post with an attachment which talks about the vaccine itself and how to donate (these are check donations).
http://www.crohnsforum.com/showpost.php?p=733489&postcount=1


----------



## Jennifer

I've been speaking with him and his daughter and they are working on setting up a paypal account or something where no 3rd party gets a cut (that's the main issue with donations in my opinion). So they are working with the forum to get something set up. I'll post the link as soon as it's available. Thank you everyone for your understanding. I'm all for any possible cure funding but I want to make sure that the money is going to the right place.


----------



## Malgrave

This really gives me hope for the first time since my son got sick:
(Latest update in the Crohn's MAP vaccine fb site)

A message of hope from Mary Sophia Kent, who won her battle against Crohn's Disease:

Hi Amy
I spoke to your father when I was at a very low point. I was 6 stone and steadily getting more and more poorly. He is an inspiring man. I took the rifabutin/clarif combo and under the care of the wonderful Jeremy Sanderson and his team I was better within months. That phone call saved my life and I'm eternally grateful for his kind words,time and advice. It was only by pure chance that I spoke to him over the phone at his office. I had phoned the hospital and asked to be put through and was just very, very lucky. Please pass on my thanks from the bottom of my heart. That was over 10 years ago and I've been well since. I will do anything I can to help with this please let me know. I'm happy to fundraise, participate in any research etc. All the best
Mary x


----------



## tzvia

how do you sign up for this trial?


----------



## sir.clausin

You don't


----------



## tzvia

then what do you do?  is this a drug trial?


----------



## sir.clausin

Its too early dear, first we need to set up the foundation for the charitywork. If you are interested in helping out, let me know.


----------



## Jennifer

At this point tzvia, they are looking to raise more funds in order to start human trials. They have no government funding and are relying on the people, charities etc to help raise enough money for it to go to human trials. If you check out the first post of this thread on page #1, you'll see an attachment that shows you how you can donate if you choose to do so (the attachment also talks about MAP and gives more information about the vaccine). They are working on getting an easier way to donate online that won't go through a 3rd party so all the donations can go directly to the cause and not let someone else get a cut of the money (the attachment on the first page goes directly to the cause yet you have to send in a check). Once that link is ready then I'll post it in this thread and edit it into the first post.


----------



## tzvia

oh, I see


----------



## AJC - Australia

their facebook page is now asking , 

*Is there someone in your life that has helped you through the low points of your life with Crohn's Disease? If there is, can you please write a few sentences (in the comments below) to say how important that person/s is/was to you and perhaps a little about how they helped you...we will add your quote to our 'MY HERO' collage that we are compiling. 

If you have a photo of you with your hero, please email it to us info@crohnsmapvaccine.com and we will add your quote to the photo and to the collage. We look forward to sharing the collage with you in coming weeks.*


----------



## Leopardos

Hello everyone,

I'm excited about this research which could lead to chrohn cure...
I just saw an old videos on YouTube, Prof. explaining about the MAP Vaccine, its 6 years old,
Is it gonna take long? Could we see a Cure for Crohn in 1 year or 2 ? :/


----------



## DamnitCrohns

Leopardos said:


> Hello everyone,
> 
> I'm excited about this research which could lead to chrohn cure...
> I just saw an old videos on YouTube, Prof. explaining about the MAP Vaccine, its 6 years old,
> Is it gonna take long? Could we see a Cure for Crohn in 1 year or 2 ? :/


From their fcebook page

*"If full funding were in place, we would be looking at completing GMP (Good Manufacturing Practice) manufacture by the end of 2015. So the earliest the vaccine could be made available to patients would be mid 2016."*

Unfortunately, full funding isnt in place.. at all. So even if the vaccine ends up working, it's a long way away.


----------



## xmdmom

Well in the scheme of things 2 years is not very long.  Yes we all would like it now but 2 years will be here sooner than you know.


----------



## JMC

Stephen Sutton raised £1.9M for a cancer charity in 24 hours because he had terminal bowel cancer.  5M Crohns sufferers can raise the £4M needed quickly if necessary. Just believe.


----------



## Malgrave

Interesting information about the MAP test (check the full reply on their fb site):

" FAQ #7: Can I get tested for MAP?

MAP testing is not available through hospital clinics -it is currently only done in research laboratories. No tests for MAP are yet 'clinically validated' although with the modern methods used they are highly accurate and sensitive. This is the case worldwide, not just in the UK. Currently, specialists who treat Crohn’s with anti-MAP antibiotics usually do so without testing for MAP, in the knowledge that the vast majority of Crohn’s patients will test positive.

Prof. Hermon-Taylor is completing the development of a new diagnostic test for MAP. This is a smart, simple test which can be done on a blood or tissue sample. It will ultimately be automatable -so that hundreds of tests can be done very quickly, using standard equipment already available to hospital labs across the world...."


----------



## Mattie

Interesting article on MAP here although written in 2001:

http://www.mad-cow.org/00/paraTB.html


----------



## greypup

It was very interesting - and long! What can we do? I brought this to the attention of our daughter's GI and she just pushed it aside.


----------



## Mattie

I think the problem is that this has been going on for so long - at least 25 years - that a lot of Gi's have come to the conclusion, rightly or wrongly, that if there was anything in it it would have been found by now.


----------



## kiny

GI are doctors. People looking at the zoonotic potential of MAP are biologists  and biomedical engineer. It is in our benefit that GI don't get involved in this discussion, nor should they be.


----------



## lbligh

Remember that Dr. Crohn himself thought MAP was a probable cause or trigger for the disease that now bears his name! But MAP is very, very difficult to culture. I don't think it was possible until modern DNA testing reached a certain level.


----------



## JMC

Mattie said:


> I think the problem is that this has been going on for so long - at least 25 years - that a lot of Gi's have come to the conclusion, rightly or wrongly, that if there was anything in it it would have been found by now.


It is true that the research has been going on for a long time, but during that time there has been slow steady progress against a back drop of very limited research funding.  On a small scale, Crohn's patients have been tested for MAP infection (92% were positive) and of those, many achieved remission with a combination of antibiotics that target MAP.  There is an argument over whether this is significant or not, but it persists mostly due to an absence of effective, large scale, clinical trials which could prove conclusively either way.

During the last twenty years the main issues faced have been:
1) It has been very difficult to test for MAP in blood and tissue samples
2) If the infection is cleared with antibiotics there is a high risk of re-infection
3) Producing a treatment that can permanently clear the body of MAP infection has been difficult

Recently, there has been significant progress on all counts, including new diagnostic tests for MAP, an extensive antibiotic trial and the development of an anti-MAP vaccine.

Although some gastros may dispute that MAP is the cause of Crohns, what they certainly _*cannot *_tell you is:
1) You are _*not*_ infected with MAP because they do not have easy access to testing
2) If you were infected with MAP it would _*not *_cause any issues


----------



## Malgrave

Latest update on the Fb site:

Prof. Hermon-Taylor and his team have developed a modern DNA vaccine against MAP. This took 10 years and cost around £850,000, much of it donated by Crohn’s families, without whom this promising new vaccine would not exist. The key features of the Vaccine are:

(1)	Treatment: Modern vaccines can be used to treat, as well as prevent, established chronic infectious diseases. If the vaccine works as well in humans as it does in cattle then there is every chance that it could CURE, or significantly attenuate, Crohn’s Disease 

(2)	Prevention: The vaccine could be given to those at higher risk of developing Crohn’s Disease (e.g. children of those with Crohn’s) to prevent them from ever getting the disease. It could also be given to domestic livestock to prevent MAP getting into the food chain in the first place. Although this would not eradicate exposure completely (MAP still exists within the environment) it would dramatically reduce human exposure.

(3)	Mechanism of action: The vaccine is what is called a ‘T-cell’ vaccine. T-cells are a type of white blood cell -an important player in the immune system- in particular for fighting against organisms that hide INSIDE the body’s cells –like MAP does. Many people are exposed to MAP but most don’t get Crohn’s –Why? Because their T-cells can ‘see’ and destroy MAP. In those who do get Crohn’s, the immune system has a ‘blind spot’ –their T-cells cannot see MAP. The vaccine works by UN-BLINDING the immune system; stimulating the body’s T-cells to seek out and destroy cells containing MAP. 

(4)	Efficacy: In extensive tests in animals (in mice and in cattle), 2 shots of the vaccine proved to be a powerful, long-lasting stimulant of immunity against MAP. See below if you would like to read the published data from the trial in mice. The results from the trial of the vaccine in cattle are currently being prepared for publication... but we have already seen and analysed the data and they demonstrate even more strongly how effective the vaccine is.

(5)	Safety: There were no obvious adverse effects from the vaccine in either of the animal trials. Obviously the vaccine still needs to be tested in humans... but because it is highly specific, targeting only MAP-containing cells, we would predict that the safety profile in humans is likely to be very similar to that in animals.

We need to get this Vaccine manufactured and into clinical trials!

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0001229


----------



## Malgrave

Interesting studies:

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0062780

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2975476/

http://informahealthcare.com/doi/abs/10.3109/00365521.2013.857713

http://www.ncbi.nlm.nih.gov/pubmed/24522266


----------



## zilla7777

http://www.medscape.com/viewarticle/752223_1

I have just been reading this article which I believe may be of interest to everyone here. It's a mouthful, but it collates some very strong supporting evidence for a MAP targeted treatment, and comparison to some of the leading treatments currently available. 

Note: The article is based on antibiotic treatment specifically, but does have some information on the nature and potential benefit of Anti-MAP treatment.


----------



## lbligh

I couldn't read the article because I don't have a Medscape account. Would you mind telling us the article's title? Sometimes I can find medical articles other places by searching for the title.


----------



## electrichead

DOES ANYBODY HAVE TWITTER!!!! I do not, but DYNAMO the famous magician suffers badly from Crohn's Disease... someone could direct him to this EXACT THREAD and he might be able to at least raise the profile of the research.


----------



## electrichead

kiny said:


> GI are doctors. People looking at the zoonotic potential of MAP are biologists  and biomedical engineer. It is in our benefit that GI don't get involved in this discussion, nor should they be.


That said, the reason MAP research never really took off (with the exception of JHT and Borody) is because GI's didn't accept MAP as a causative factor. They didn't accept it previously because there was no accurate diagnostic test before.


----------



## JMC

electrichead said:


> DOES ANYBODY HAVE TWITTER!!!! I do not, but DYNAMO the famous magician suffers badly from Crohn's Disease... someone could direct him to this EXACT THREAD and he might be able to at least raise the profile of the research.


Yes, I have already tweeted him about this. I will try again once the MAP Vaccine website is up.


----------



## zilla7777

lbligh said:


> I couldn't read the article because I don't have a Medscape account. Would you mind telling us the article's title? Sometimes I can find medical articles other places by searching for the title.


My apologies, I keep forgetting that I'm signed into my Uni library account (and thus have access to databases)

The name of the paper is:

Chamberlin, W. Borody, T.J. Campbell, J. 2011 'Primary treatment of Crohn's disease: combined antibiotics taking center stage' Expert Rev. Clinical Immunology. Vol 7(6), pp 751-760


EDIT: Thank you HelenMelb!


----------



## HelenMelb

Try this link
http://www.cdd.com.au/pdf/publications/All%20Publications/2011-Primary%20treatment%20of%20Crohn's%20disease%20combined%20antibiotics%20taking%20centre%20stage.pdf


----------



## kiny

A problem I think with this antibiotic strategy is something other people have pointed out too. If it is given indiscriminately without knowing if the patient harbours MAP but instead harbours other pathogens like invasive E Coli, you are going to create resistance against gram- bacteria, which could make antibiotics that are effective against E Coli like cipro less effective. Antibiotic resistance is a major issue if you want to target AIEC. In a lot of people with crohn's disease, especially people with ileum involvement, you can detect AIEC but not MAP, the case for AIEC is quite a bit stronger than it is for MAP, so they need to be absolutely sure those people have MAP, which I don't think happened in that study. 

I said on the other page I strongly doubt that everyone with crohn's disease has MAP, there are studies that show MAP in crohn's disease people, but I know a lot of unpublished accounts of people where they found no MAP in big numbers of people. They're not published since the DNA test was done by labs that aren't supposed to do the test on humans, so it's never published. Lots of veterinary labs can do IS900 test for MAP DNA and culture, just because they're not supposed to test humans doens't mean it doesn't happen, if you want to get tested you can if you insist, the equipment and tests are there and this is an issue the farming industry is interested in too. If they use antibiotics indiscriminately, they are going to do more harm than good.


----------



## AJC - Australia

I agree that taking anti biotics forever more does not seem like a viable option, especially as the gastro world (of specialists) are leaning towards the gut ecology being of utmost importance in their current studies/theories for better health in CD. 
Prof Hermon-Taylor's MAP vaccine begins with the MAP diagnostic test. There are a few doctors, research labs currently developing a modern diagnostic that will accurately be able to show you if you do/dont have a MAP infection. This is exciting! It would be so huge for everyone if they could test 10, 000 CD patients next week. 

Until that MAP diagnostic test is available, we are all playing the waiting game.


----------



## kiny

If the gut flora is relevant will be an endless debate until they find the cause I think. The studies that are quoted a lot are the ones that show that you need a fecal stream and microbiome to induce collitis in some animals and if you do fecal diversion in CD patients, that specific area seems to heal up on it's own. But collitis in animals is not the same as Crohn's disease, collitis in mice is done with DSS that they give to the mice until they get collitis. The most accurate mouse model of crohn's disease is not one that involves the gut flora, or DSS, or fecal stream, it's the one where they infected the mouse with AIEC, an intracellular pathogen. I will doubt the gut flora is involved until there is actual proof there is, I don't see much proof just the fact there is dysbiosis, dysbiosis happens in many diseases.

The intestine is full of macrophages, if anything is going to exploit the innate immunodeficiencies in crohn's disease it's going to be a pathogen that managed to break through the epithelial barrier or peyer's pathes and comes into direct contact with macrophages. That could be MAP or AIEC or any other number of intracellular pathogens, but not the gut flora. I doubt the gut flora theory very strongly.


----------



## sir.clausin

This is interesting, but if you believe Professor John Hermon-Taylor; then 95%ish of us with IBD harbors MAP; AND according to him MAP is this main infection and after that hell have broken loose, then other infections manifests like AIEC etc. So in other words, Crohn's is caused by a combination of infections and food allergies (which I heard from someone else) this apply to me, cause I get folliculitis and acne from almost everything I eat. For me who has my crohns isolated in the terminal ileum and have the most bizarre symptom picture, my biggest hope now is the vaccine from Qu biologics and then the anti-map therapy. I really hope that we find the answer soon, because I am sick and tired of this shit of disease.


----------



## sir.clausin

Looks like cipro is only a temp fix, if it works.
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0022823

So in other words, the only hopefull treatment now is the Ssis vaccine from Qu.


----------



## onolox

Stop talking and start donating!


----------



## onolox

delete


----------



## Malgrave

Dr Behr's lectures on Crohn's, MAP and immunedeficiency:

2008 (parts 1-6):
http://m.youtube.com/watch?list=PL25307C42F8CD3412&v=nMucsxJau6k

2010 (parts 1-7):
http://m.youtube.com/watch?v=N8AYhnLkf9A

His list of publications:
http://www.mcgill.ca/molepi/publications
(Many of them concerning the link between MAP, Crohn's and immunedeficiency)

Update lecture from last week, hopefully available on youtube soon:
http://www.crohnsforum.com/showthread.php?t=63573


----------



## sir.clausin

Thanks for contributing Malgrave! I´ve seen them before, did not know about he most recent lecture though.


----------



## kiny

Malgrave said:


> Dr Behr's lectures on Crohn's, MAP and immunedeficiency:
> 
> 2008 (parts 1-6):
> http://m.youtube.com/watch?list=PL25307C42F8CD3412&v=nMucsxJau6k


It sums up what many people think crohn's disease is. There is an innate immunedeficiency, a pathogen took advantage of the immunodeficiency and you get chronic inflammation until the bacteria is removed.

This theory is not the same theory as the theory about dysbiosis. This theory does not dismiss dysbiosis, it's there, but the dysbiosis is not behind the inflammation, it is a secondary event of the inflammation. People with intestinal tuberculosis show dysbiosis too.

All the candidate bacteria like MAP, AIEC, Campylobacter, Salmonella, Yersinia, Listeria....all intracellular, none are found in normal gut flora. If they are invlved things like fecal transplants would not help at all. (there are some strains of invasive E Coli in some healthy people, but don't have the same virulence factors).

For the first time in decades there is a new antibiotic against TB called bedaquiline, mycobacteria are notoriously hard to treat bacteria, almost all mycobacteria are pathogens and all of them are incredibly hard to kill.

The counterargument often used "If it was infection, why doesn't antibiocs cure it"....MAP is very resistant to antibiotics, and AIEC lives in biofilms, they're very resistant type of bacteria. MAP has the added problem that it is very slow dividing compared to TB.


----------



## kiny

Someone asked a question if you didn't eat meat you wouldn't get MAP etc. If Dr. Behr is right that the manure (sp?) infected with MAP is being thrown on fields, my guess is there are plants with MAP also.

edit: and it is, MAP in plants: http://www.ncbi.nlm.nih.gov/pubmed/21279514


----------



## Crohn2357

I wonder if specific bacteriophages can be used againist MAP? If there is none or not known any right now, then maybe scientists will create it in the future. With genetic manipulations.
http://www.theguardian.com/world/2014/may/07/living-organism-pass-down-artificial-dna-us-scientists


----------



## WelshGuy

sir.clausin said:


> Looks like cipro is only a temp fix, if it works.
> ...
> So in other words, the only hopefull treatment now is the Ssis vaccine from Qu.


So what happened to John's vaccine has he given up if that is no longer a hopeful treatment to look to ?

Even if gut flora is not the cause i see no major harm in the attempt at this MAP theory. Unless there are unforeseen consequences of removing MAP from the digestive system.

From my own research i strongly believe a combination of a specific gene that affects how the immune system reacts to a bacteria or multiple bacteria is the cause.

This may even apply to other digestive disorders with different symptoms...theres no reason to suggest the immune system can only react in one way.
This is also why i believe Psoriasis is infact a bacterial cause with the immune system reacting to it. Theres many forms of psoriasis types which simply mean the immune system reacted a different way to the threat. It is also patchy in nature like Crohns. Sometimes i regard Crohns as the psoriasis of the digestive system.

The fact that there are differences between Crohn's and IBD could simply be the immune system's decision on how to best tackle a threat but fundamentally the cause is the same (not necessarily the same bacteria though).

The bigger question is, if it is MAP and vaccine does cure it, how likely is it to avoid MAP from your diet... its probably everywhere. I doubt highly the industry would have to change its methods because of this.


----------



## kiny

WelshGuy said:


> Even if gut flora is not the cause i see no major harm in the attempt at this MAP theory. Unless there are unforeseen consequences of removing MAP from the digestive system.


Mycobacteria are intracellular, they're not found in gut flora. MAP is like intestinal TB, it resides in transmural tissue. How it enters the gut wall I don't really know, I know AIEC exploits things like peyer's patches.

The inflammatory response would start when MAP or any other bacteria comes into contact with the macrophages in the tissue. Infecting macrophages is what mycobacteria do, that is their forte.

The fact mycobacteria are extremely good at exploiting macrophages (just like AIEC) is why they're a good candidate for crohn's disease, because crohn's disease innate immunodeficiencies revolve around genes that affect macrophages.

If there is an expectation that people with ATG16L1 / NOD2 and IRGM mutations would be vulnerable to infection, the best candidates are mycobacteria and now also invasive E Coli.

And one of the places this would manifest itself is the intestine, since that's where the tissue is filled with macrophages.


----------



## WelshGuy

kiny said:


> Mycobacteria are intracellular, they're not found in gut flora. MAP is like intestinal TB, it resides in transmural tissue. How it enters the gut wall I don't really know, I know AIEC exploits things like peyer's patches.
> 
> The inflammatory response would start when MAP or any other bacteria comes into contact with the macrophages in the tissue. Infecting macrophages is what mycobacteria do, that is their forte.


Hmm maybe micro tears from either poor diet (lack of fibre) or just genetic structure to begin with slowly and eventually leads to them entering into the gut wall.

The issue is what condition is the digestive system in before actually developing Crohn's, given there is no need to be checked to see the condition of the insides when we are symptom free we can't really know for sure. People only get tested after having symptoms. And i don't think a camera from a colonoscopy would see these microscopic tears anyway.


----------



## kiny

WelshGuy said:


> The issue is what condition is the digestive system in before actually developing Crohn's


The earliest patients studies have inflamed lymphoid follicles. Invasive bacteria in the small intestine will come into contact with peyer's patches. The fact the peyer's patches are most active during teenage years and most people with crohn's disease develop it during teenage years I think are related.

Regarding route of transmission, MAP and AIEC could both be zoonotic. Cats actually carry AIEC, there are cats with "IBD".

If the cats are spreading around invasive E Coli, it would explain the weird studies that seem to make no sense, where a whole groups of people get sick with crohn's disease under the same roof, even though they can find no genetic susceptibility to CD.

Maybe someone should study the pets of people with CD.


----------



## WelshGuy

kiny said:


> The earliest patients studies have inflamed lymphoid follicles. Invasive bacteria in the small intestine will come into contact with peyer's patches. The fact the peyer's patches are most active during teenage years and most people with crohn's disease develop it during teenage years I think are related.
> 
> Regarding route of transmission, MAP and AIEC could both be zoonotic. Cats actually carry AIEC, there are cats with "IBD".


I'm not sure what inflamed lymphoid follicles means, but if that allows invasion of the wall...is this the case for 100% of Crohn's patients, because it would seem more logical to find ways to prevent the invasive bacteria than finding a vaccine. As vaccine will only help until it may one day get into the wall again.


----------



## kiny

I don't know, but I personally don't think you can single out a bacteria. Because people with immunodeficiencies (and people with CD have innate immunodeficiencies) are never susceptible to just one bacteria, it is always a plethora of infections they are vulnerable to.

But you can argue that some bacteria would be better suited at exploiting these deficiencies than others, and MAP and AIEC are extremely well suited at exploiting macrophages, that is what they do, that is how they survive.

If you actually find the bacteria within the tissue and granuloma, the gut flora theory starts to become an irrelevance. Maybe the dysbiosis helped AIEC proliferate, but that's irrelevant once it's in tissue, you're not going to remove the bacteria by trying to manipulate the gut flora, you could easily make matters worse.


----------



## WelshGuy

kiny said:


> I don't know, but I personally don't think you can single out a bacteria. Because people with immunodeficiencies (and people with CD have innate immunodeficiencies) are never susceptible to just one bacteria, it is always a plethora of infections they are vulnerable to.
> 
> But you can argue that some bacteria would be better suited at exploiting these deficiencies than others, and MAP and AIEC are extremely well suited at exploiting macrophages, that is what they do, that is how they survive.


And so the theory is the vaccine provides patients with an ability to then fight it in future cases? Because if the vaccine doesn't make patients immune like the general population seem to be, then the vaccine is only a short term fix.

Then i wonder what does the immune system have in a healthy patient that a crohn's patient does not.


----------



## kiny

WelshGuy said:


> Then i wonder what does the immune system have in a healthy patient that a crohn's patient does not.


"healthy" people don't have the autophagy and macrophage deficiencies. Many people without crohn's disease have CD predispostions in NOD2 and ATG16L1 too. There is an evolutionary reason why these mutations exist, maybe it protected us from a bacteria thousands of years ago, but now leaves us vulnerable to others.


----------



## kiny

Another argument for MAP you could make is the overlap with Leprosy predisposition. The predispositions to crohn'd disease are extremely similar to the ones that leave you vulnerable to leprosy. NOD2 for example. We don't come into contact with leprosy, but my guess is we would be very vulnerable to it if we did.


----------



## Crohn2357

kiny, what do you think about potential drugs targeting dna? For future?


----------



## kiny

Don't know. I am not a fan of the recent advance in interleukin blockers. We sort of know what TNF-alpha does, there are many cytokine no one understands. I do not want people with crohn's disease to be an experiment platform. We need safer drugs.


----------



## WelshGuy

kiny said:


> "healthy" people don't have the autophagy and macrophage deficiencies. Many people without crohn's disease have CD predispostions in NOD2 and ATG16L1 too. There is an evolutionary reason why these mutations exist, maybe it protected us from a bacteria thousands of years ago, but now leaves us vulnerable to others.


I don't suppose there is an actual way to solve these deficiencies in patients some how ?


----------



## kiny

WelshGuy said:


> I don't suppose there is an actual way to solve these deficiencies in patients some how ?


There could be if you stimulate autophagy in cells, but autophagy has many other functions not related to bacteria.

Vitamin D is one of the ways autophagy might be stimulated because of NOD2 and VDR. AIEC is more susceptible if vitamin D status is optimal than if it is deficienct.

People with very low vitamin D status have worse crohn's disease.


----------



## WelshGuy

kiny said:


> There could be if you stimulate autophagy in cells, but autophagy has many other functions not related to bacteria.
> 
> Vitamin D is one of the ways autophagy might be stimulated because of NOD2 and VDR. AIEC is more susceptible if vitamin D status is optimal than if it is deficienct.
> 
> People with very low vitamin D status have worse crohn's disease.


Hmm has there been much study in people who are first diagnosed with crohn's to already have been found to have low Vitamin D during the diagnostic stages?

But i don't think its as simple as this otherwise Vitamin D supplements would surely be solving the problem and i feel we would of found that out already.


----------



## kiny

There have been, low vitamin D status is linked to worse crohn's disease.

Vitamin D also enhances macrophage function and helps kill AIEC. https://www.ecco-ibd.eu/publications/congress-abstract-s/abstracts-2013/item/p026-vitamin160d-enhances-macrophage-function-and-improves-killing-of-crohn-s-associated-e160coli-2.html

Vitamin D wouldn't help us rid of a bacteria directly, it would just help us overcome macrophage deficiencies, which would then allow us to better control pathogens exploiting those deficiencies.


----------



## WelshGuy

I see but making it worse is not the same as a potential cause. 

Unless there are also studies to show it increases you chances in a substantial way.

Would someone with severe crohns perhaps need more than usual recommended  Vit D amount per day for a while to control it ?

Because i don't buy into the "recommended daily intake" surely this is really is down to the individual person any may cause people to have less than they actual require.


----------



## kiny

I agree, it is a number of factors probably, genetic and microbial. But low vitamin D status would leave you more susceptible, the fact Canada has one of the highest rates of crohn's disease and very little sunshine could be related.


----------



## Crohn2357

So kiny, what are your thoughts about SSI treatment?


----------



## WelshGuy

kiny said:


> I agree, it is a number of factors probably, genetic and microbial. But low vitamin D status would leave you more susceptible, the fact Canada has one of the highest rates of crohn's disease and very little sunshine could be related.


Doesn't Crohn's lower your ability to absorb Vit D? So its even more difficult at that point to keep levels up.


----------



## kiny

Don't know much about it. Will read up on it if there is more info about it. Kind of hard to find info on what they are donig exactly. Some other ppl on the forum know more about it I think.


----------



## kiny

WelshGuy said:


> Doesn't Crohn's lower your ability to absorb Vit D? So its even more difficult at that point to keep levels up.


Oral absorption? Not sure. But VDR polymorphism is linked to crohn's disease. It's a Vitamin D receptor.


----------



## Crohn2357

kiny said:


> Don't know much about it. Will read up on it if there is more info about it. Kind of hard to find info on what they are donig exactly. Some other ppl on the forum know more about it I think.


Yes, there aren't detailed info about it.


----------



## WelshGuy

kiny said:


> Oral absorption? Not sure. But VDR polymorphism is linked to crohn's disease. It's a Vitamin D receptor.


Well i read somewhere Crohns lowers your ability to absorb Vitamin D from diet. If true this would simply mean Vit D is low in most patients, but also the RDA for Vit D would need to be higher for them to get adequate levels.

I mean it could be possible that if you do manage to maintain sufficient level your Crohns could go completely after a long enough time of trying it. But I currently cannot find any trials that tested whether a large intake of Vit D can  reverse it. 

If it lowers the symptoms, do colonoscopies etc show lowering of inflammation and other visual symptoms normally seen in CD patients ? Or are patients simply being more tolerant to the pain etc?


----------



## kiny

They used CDAI scores in a number of studies. CDAI isn't as reliable as a Rutgeert's score with colonoscopy but there are enough studies on Vitamin D and enough studies on it's effects on macrophage function that I would argue it's good to get your vitamin D checked from time to time.

Many people on the forum get their vitamin D checked and supplement orally when needed, going in the sun isn't a good idea if you're on things like thiopurine, they know this from transplant patients.


----------



## Crohn2357

Kiny, do you have any information, thoughts about autologus mesenchymal stem cell therapy as a potential treatment for Crohn's disease? And what do you think about Plasmapheresis- again as a treatment of Crohn's disease?


----------



## WelshGuy

So is it likely that low Vit D could allow the invasion into the wall of the gut?

If so if we find a way to kill those bacteria that managed to invade, then simply keeping high levels of Vit D would prevent future invasion to the gut wall.

So a vaccine is only going to stop your current infection... but holds no ability of stopping another one in future, that would be down to diet.


----------



## kiny

WelshGuy said:


> So is it likely that low Vit D could allow the invasion into the wall of the gut?
> 
> If so if we find a way to kill those bacteria that managed to invade, then simply keeping high levels of Vit D would prevent future invasion to the gut wall.
> 
> So a vaccine is only going to stop your current infection... but holds no ability of stopping another one in future, that would be down to diet.


Vitamin D would help the innate immune system control a pathogen, it has effects on innate immune cells like macrophages and dendritic cells, and some effects on lymphocytes, the main benefit for CD patiens is the effects Vitamin D could have on autophagy. 

For pathogens like MAP and AIEC, they already reside in tissue, they don't need to penetrate the gut wall or infiltrate M Cells, they're there, in tissue, they manage to survive by exploiting macrophages and the immune system. I really doubt CD would revolve around reinfection.

What vitamin D would do is help us control and kill those bacteria more efficiently. How much vitamin D helps I'm not sure, many of the studies in animals are not possible in humans, they have such high vitamin D levels that it causes hypercalcemia.


----------



## kiny

Crohn2357 said:


> Kiny, do you have any information, thoughts about autologus mesenchymal stem cell therapy as a potential treatment for Crohn's disease? And what do you think about Plasmapheresis- again as a treatment of Crohn's disease?


Don't know anything about that sorry.


----------



## WelshGuy

kiny said:


> Vitamin D would help the innate immune system control a pathogen, it has effects on innate immune cells like macrophages and dendritic cells, and some effects on lymphocytes, the main benefit for CD patiens is the effects Vitamin D could have on autophagy.
> 
> For pathogens like MAP and AIEC, they already reside in tissue, they don't need to penetrate the gut wall or infiltrate M Cells, they're there, in tissue, they manage to survive by exploiting macrophages and the immune system.
> 
> What vitamin D would do is help us control and kill those bacteria more efficiently. How much vitamin D helps I'm not sure, many of the studies in animals are not possible in humans, they have such high vitamin D levels that it causes hypercalcemia.



What about a direct high dosage of Vit D to the area affected by CD? And if it seems true that Vit D helps kill it off , why is the medical world not just focussing on giving high Vit D supplements as a mandatory medication along side the pain killers etc. 

A vaccine almost seems unnecessary if vitamin D is the main solution.


----------



## kiny

WelshGuy said:


> if vitamin D is the main solution.


vitamin D might help a little bit, it's not a replacement for medication, I agree that doctors should check vitamin D status of CD patients more though


----------



## WelshGuy

kiny said:


> vitamin D might help a little bit, it's not a replacement for medication, I agree that doctors should check vitamin D status of CD patients more though


But if it helps at all, then there must be a property of Vit D that gives us that ability to fight the disease, perhaps if we can find that property and have that in a medication that could work without the need of excessive Vit D consumption.

As for simply killing off MAP with a vaccine, does that really solve the problem of CD patients being unable to fight it off naturally that non CD people seem to manage....


----------



## HelenMelb

_Quote: "Kiny, do you have any information, thoughts about autologus mesenchymal stem cell therapy as a potential treatment for Crohn's disease?"


This article explains the recent work with MSCs and Crohn's. I spoke to Professor Forbes late last year as a family member was considering this treatment-it turned out they weren't eligible, but nonetheless, the future potential of this treatment is huge.

http://lifescientist.com.au/content...ronic-inflammatory-disease-on-trial-160510901_


----------



## Crohn2357

HelenMelb said:


> _Quote: "Kiny, do you have any information, thoughts about autologus mesenchymal stem cell therapy as a potential treatment for Crohn's disease?"
> 
> 
> This article explains the recent work with MSCs and Crohn's. I spoke to Professor Forbes late last year as a family member was considering this treatment-it turned out they weren't eligible, but nonetheless, the future potential of this treatment is huge.
> 
> http://lifescientist.com.au/content...ronic-inflammatory-disease-on-trial-160510901_


_

Thank you._


----------



## rollinstone

kiny said:


> Don't know much about it. Will read up on it if there is more info about it. Kind of hard to find info on what they are donig exactly. Some other ppl on the forum know more about it I think.


From what I understand, the SSI vaccine works by injecting a dead strain of e-coli bacteria under the skin, each time this is done it stimulates the body to reproduce macrophages and clear out the old faulty ones. Could be wrong about that but that's what I remember reading. Trevor and a few other users on here are doing the trial at the moment, they've kindly updated as they go along, don't have the link coz im on my phone but from what I can tell the ones on the drug are seeing some good results.


----------



## HelenMelb

Yes, I think you're right Joshuaaa.
This link is from the Qu Biologics website and explains the mechanism of SSI vaccines:

http://www.qubiologics.com/technology/how-it-works/


----------



## sir.clausin

@WelshGuy: Sorry, let me refrase myself, off course Johns MAP-vaccine is the best upcoming treatment and hopefully cure. Qu biologics SSIS is already in use (trial) so I was thinking on which medication is available/in use as of now. 

Interesting times!


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## sir.clausin

Joshuaaa: Shot you an PM


----------



## kiny

WelshGuy said:


> As for simply killing off MAP with a vaccine, does that really solve the problem of CD patients being unable to fight it off naturally that non CD people seem to manage....



If MAP is behind the inflammation, yes, if you removed MAP it would cure the patient. The genetic predisposition would still be there but the patient would be cured, people who are cured of leprosy or TB are also cured once you remove the pathogen, even though many still have a predisposition to it. For all intents and purposes, they are cured.

But I am apprehensive about this theory, especially about the numbers being thrown around that 90% of people with CD harbour MAP.

I was tested for MAP and it was negative, I know a few people who were tested and they were also negative for MAP. I was there when they did the culture readings which for MAP are done every X months since it grows so slowly, MAP is extremely slow dividing. By then the DNA test had already been negative, and the culture ended up negative too and after a year the test was stopped.

This has happened in studies too, whole groups of samples that all tested negative in tests. 

In none of the 35 people with crohn's disease was MAP detected, and in all of the Johne's disease samples was MAP detected: http://www.clinmedres.org/content/1/3/217.full.pdf

Why do some studies detect MAP and why do some don't. Why do some studies have 21 out of 30 CD positive for MAP and why are there 35 CD people negative for MAP in another study.

Are there different groups of patients, or are people just getting into contact with MAP by the environment and do people with CD simply need more time to clear MAP.

I said it in another post, of all the organisms that can infect macrophages, AIEC has a much better track record than MAP in tests. The Australian trial that failed to show any positive effect after long term usage of anti-MAP antibiotics warned clinicians to consider that treating a patient for a MAP infection might create resistance for other bacteria.

I don't know if MAP is involved at all, I do think that for us patients it is important that it is looked into.


----------



## sir.clausin

kiny said:


> Why do some studies detect MAP and why do some don't. Why do some studies have 21 out of 30 CD positive for MAP and why are there 35 CD people negative for MAP in another study.
> 
> Are there different groups of patients, or are people just getting into contact with MAP by the environment and do people with CD simply need more time to clear MAP.


The short answer to your question Kiny, is that the professor John Hermon-Talor, who is the most experienced in MAP, have developed a new special technique in order to find MAP in people.It seems that the "other" tests being used in the world is highly unreliable, I can´t remember the details but you would need to follow Johns step to step instructions to get correct results. You can read much more here https://www.facebook.com/crohnsmapvaccine 

Like you mention, the bug grows really slowly and is extremely tiny, that and other factors make it hard to detect. But what John and his team do is they will take an ultra thin slice from the tissue and test for MAP using an in-situ hybridisation technique (John has developed this technique for MAP testing and it is cutting edge -hence not done anywhere else in the world).

Cheers!


----------



## WelshGuy

It looks like BBC already covered the idea of MAP specifically John's research:

http://news.bbc.co.uk/1/hi/health/3130173.stm

Perhaps if someone can inform BBC of the fact they already covered the news of it, and inform them that great strides are made and all that stops it now is funding they might update the article.

Also if enough people click the link it'll trend on there "most popular" panel.


----------



## Malgrave

Individual Crohn's MAP vaccine fundraising campaigns about to start:
Take a look on Facebook: Crohn's MAP Vaccine Heroes and join!


----------



## maile

I believe Prof Hunter's assertion that MAP causes Crohns and here is why...
About 1 1/2 years ago I gave my daughter live Kefir with pasteurized milk. She took that probiotic concoction for 3 days. On day 4 she had a 104 degree fever and explosive diarrhea. Two months later she had a colonoscopy and diagnosed with Crohns. I always felt that the kefir milk concoction was the cause but blamed it on the kefir not the milk (now I know better). I took my daughter recently to an infectious disease doctor and her stool sample came back positive for mycobacterium avium complex. MAP falls under mycobacterium avium complex. She is going to have a colonoscopy soon and tissue samples will be taken to see if MAC is present. It was after this stool sample came back that I read about prof hunter and the relationship between MAP, milk and Crohns. I believe the milk infected with MAP caused my daughters crohns. If my daughter has both crohns and mycobacteria avium do you treat the crohns or the mycobacteria? In crohns you suppress the immune system but with Mycobacterium avium suppressing the immune system or giving anti TNF alpha medication might not be such a good thing according to research articles I've read. However after the kefir milk, she was having fevers and explosive diarrhea for about 5 months and was put on flagyl, an elemental diet for a few weeks and 6mp, an immunosuppressant. Anyway now she is only on pentasa because her WBC count was very low. I guess you could say her crohns is in remission but what if it flares again? That's why the colonoscopy to see if it's in the tissues. Do you treat the crohns symptoms or the mycobacteria? But there is no doubt in my mind that it was the milk. The milk caused her Crohns.


----------



## lbligh

I have read that MAP grows very very slowly, which is part of the reason it is so hard to kill. Given that, it would be surprising that she could have contracted the MAP infection that quickly, but I agree that for most people milk would be the source of MAP contamination. It has been well established that MAP can survive pasteurization and even ultrapasteurization according to one Mexican study I read. 

My daughter, too, was diagnosed with Crohn's about 2 months after having an unexplained illness with fever. We suspect that unknown infection was the trigger. We have not been able to get her tested for MAP (where did you get that done, Maile?). We did make a large contribution to the MAP vaccine project, which will include promotion of the MAP test that Dr. Hermon-Taylor has developed. MAP is not our highest priority now because she is among the lucky ones for whom the Specific Carbohydrate Diet has worked astonishingly well, but we would like to get our daughter tested for MAP and given the vaccine ASAP if appropriate.


----------



## greypup

Maile

I am suspicious of dairy being a trigger for my daughter's crohn's as well.  Just letting you know that you have company.


----------



## maile

Hi ibligh,
To answer your question, it was just a mycobacterium culture test of the stool and it was ordered by an infectious disease doctor. I think any doctor can order it. It came back "mycobacterium avium complex identified by DNA hybridization." It didn't say MAP but MAP is part of MAC and since milk caused her infection, I believe it was MAP. The kefir milk was prepared with live kefir grains added to pasteurized milk. The mixture was then placed on the kitchen counter to ferment for 24 hours. After doing this for 3 days, she got a fever, explosive diarrhea and so forth. Anyway now she seems to be fine with one solid BM a day. Her calprotectin was a little under 300 though so there is probably still some inflammation.
Anyway hope that answers your question.


----------



## JMC

MAP grows very slowly, it is likely to take several years between exposure and illness appearing.


----------



## Malgrave

I have also heard, like JMC said, that it is likely to take several years between exposure and illness appearing. But what explains the fact that very little children fall ill too? My son was diagnosed at the age of two. Last summer his biopsies showed mycobacterium avium complex (he was almost six then). It was suspected because he has so many granulomas, which is also often a sign of a mycobacterium infection. He had granulomas already at the age of three, one year after the diagnosis.
Btw. His GI told us that they ALLWAYS suspect a mycobacteria cause when a young child has granulomas. Interesting!


----------



## lbligh

That's VERY interesting, Malgrave. I see you are in Belgium -- it seems that the rest of the world is paying more attention to MAP than the United States.  This is the first we have heard of the granuloma/child/MAP connection that your doctor mentioned.

Maile, what country are you in? (I love it that this board is so international.)

It's astounding that they are actually testing for MAP. What is the proposed treatment for the MAP infection?


----------



## Malgrave

His main GI is in the leading IBD hospital of the German speaking world. In Belgium they suspected in the beginning Chronic granulomatous disease because of those granulomas. The test was negative though. If I remember correctly this disease is one of the primary immune deficiencies and in it a person is vulnerable for mycobacterium infection. For me there is a link!

After the mycobacterium finding last year he was put on anti-tuberculosis treatment which happened to be the same as anti-MAP treatment based on two antibiotics.

This is extremely interesting article on the link between granulomas and many diseases:

http://journal.frontiersin.org/Journal/10.3389/fimmu.2013.00120/full


----------



## maile

Ibligh, we're from California.
Malgrave, did those anti MAP antibiotics help?


----------



## Malgrave

Yes they helped even though he was on them only for two months. Colonoscopy showed only scars. After stopping the antibiotics, things started to get worse again. Two weeks ago the colonoscopy showed a lot of granulomata in stomach and small intestine. The antibiotics were  restarted immediately.


----------



## lbligh

Hmm, that confirms that MAP is hard to kill and lurks in the body.  I suppose the MAP vaccine would be instead of antibiotics and would take a while to do its job, but I am not sure.


----------



## sir.clausin

Attention: Do we have any members on here who can translate an informationsheet from English to Norwegian regarding MAP? Please send me an PM. I did the Swedish translation and it´s for the upcoming Anti-MAP homepage regarding the vaccine.

thanks


----------



## Malgrave

Take a look at very informative infographic on the subject:

https://www.facebook.com/crohnsmapvaccine


----------



## Karma

I have a request!

I don't have a Facebook account but is there any way someone could ask the vaccine people:

'What can we do now - until the vaccine is done.  Should we be boiling water, only drinking UHT milk etc?'

Perhaps there's something we can do to limit our exposure to this pathogen.  Maybe, at least for some of us, we can clear it in small volumes and limiting our exposure may help?


----------



## kiny

if map is involved or if limiting MAP is helpful after someone would be infected etc

But I think yes, if you boil water at boiling point for 20 seconds or more you porbably would kill the MAP I think. MAP is very heat resistant, but it's not going to survive boiling for very long. Pasteurisation happens at below boiling point for like 10 seconds. Some people claimed it killed MAP, but they regularly find MAP in boxes of milk from the store. While some MAP does get killed during pasteurisation, as they have shown, not all of it is killed. People don't like the taste of heated milk so they don't pasteurise milk properly.

I don't drink milk anymore, but I always used to heatl it when I made hot coco until it had a skin on top.


----------



## kiny

I don't know how much if any MAP would be present in bottled water. It is present in water reservoirs since the feces of the cow end up infecting the soil. MAP is present in some plants. But water is treated after that, not sure if MAP would would end up in bottled water like it does in milk boxes, it is in milk boxes for sure, many studies about it. It's been found in milk powder for babies too. 1 out of 3 baby milk powder formulation in Europe had viable MAP in them. MAP is much much more widespread than governments are willing to admit.

I'm always amazed at the lack of coverage this gets. People scream bloody murder when there are traces of mercury or traces of e coli in animals. And here you have a mycobacteria in milk and baby powder milk, that has been shown for decades now, and no one seems to care.


----------



## Karma

I only drink UHT milk which is much more effective than pasteurisation.  Our water is always filtered and foods with milk in it, apart from dark chocolate (!), are always cooked in the oven.

I also have a theory that a normal stomach bug for the rest of the family causes a flare for me.  So I'm extra careful about making sure hands are washed etc. etc.

I'm not surprised people don't seem to care - I don't think they know!  I didn't before I got Crohn's.  I wonder why any MAP vaccine can't be used in farm animals to reduce exposure there...


----------



## JMC

Karma said:


> I wonder why any MAP vaccine can't be used in farm animals to reduce exposure there...


It is quite possible the vaccine will be used on animals if the cost of manufacture is low enough


----------



## Karma

Perhaps governments could mandate its use if it were reasonably priced?  Would it need to be used indefinitely or would a couple of years eradicate it?


----------



## kiny

In the West (US-Europe), if your cow or herd has MAP you are on your own, you are required to report it but you get no compensation as I understand it.

In Japan for example, if you tell the government your cow has Johne's Disease, you get money from the government for the value of that cow as if it were a healthy cow, and the cow gets slaughtered.

There is no incentive in the West to even report your cow has MAP. The only reason it does come to light is because when you sell the cow cross border, the new owner wants to check the cow and they often check for MAP, because MAP affects the milk output of the cow and one cow is enough to infect his whole herd, since cows give MAP to one anohter through their feces.


----------



## Karma

Crazy stuff.

Let's hope the vaccine gets the funding it needs.  Sounds like it stands a good chance of working.

I wonder about the funding though.  I'm donating towards it, and am proud to do so, but as I understand it there's a limited company set up which owns the technology.  

I hope that we won't fund the thing and then find that the company will make billions for its investors and make access to the vaccine very expensive or difficult to those in different countries!


----------



## Mattie

Professor Herman Taylor's site is now live:

www.crohnsmapvaccine.com

Some of your concerns about contributing to funding the vaccine may be answered here. I, too, am donating, and very proud to do so.


----------



## JMC

Karma said:


> I wonder about the funding though.  I'm donating towards it, and am proud to do so, but as I understand it there's a limited company set up which owns the technology.
> 
> I hope that we won't fund the thing and then find that the company will make billions for its investors and make access to the vaccine very expensive or difficult to those in different countries!


The intellectual property to the vaccine is owned by HAV Vaccines Ltd.  Details are on the website.  The company will not be funded by donations but by investors.  Donations will be used to develop the MAP diagnostic test.  I am 100% sure, having met Prof Hermon-Taylor, that his driving motivation is to cure Crohns, not get rich, so I am sure the company will behave ethically.


----------



## SidS

So is this or SSI Vaccine promising?


----------



## sir.clausin

Both are really interested, but the MAP-vaccine is not being teste now so..
SSI is being tested, som great results obvoisly


----------



## WelshGuy

JMC said:


> The intellectual property to the vaccine is owned by HAV Vaccines Ltd.  Details are on the website.  The company will not be funded by donations but by investors.  Donations will be used to develop the MAP diagnostic test.  I am 100% sure, having met Prof Hermon-Taylor, that his driving motivation is to cure Crohns, not get rich, so I am sure the company will behave ethically.


So they can afford the vaccine but not the diagnostic tool? ??


Why would the diagnostic tool be declined when applying for funding, theres zero risk for diagnostic purposes...

I'm pretty sure they are looking for funding for vaccine trials in humans as well as the diagnostic tool.


----------



## onolox

Every month I've donate to Professor Hermann, stop talking and donate too!
I'm from a third world country.


----------



## sir.clausin

onolox: watch your attitude! If you are truly are giving money, then thats great. However you have no clue who we are and what we do.


----------



## JMC

onolox said:


> Every month I've donate to Professor Hermann, stop talking and donate too!
> I'm from a third world country.


There are lots of people on this forum who have donated money and _time _to help this cause.  I see you are from Brazil, I am sure Amy Hermon-Taylor would love to have someone in Brazil on the support team, just get in contact via the website or Facebook page.

I agree though, we need to do more.  If everyone donated just 5% of their net monthly income the diagnostic test would be fully funded which in turn would help to get the investment needed for the vaccine.  Such small sums of money from many people would make a tremendous difference yet have so little downside on the day to day life of the person donating.


----------



## Malgrave

Onolox: would you be interested to set up a JustGiving page for Brazilian crohnies for raising money for Crohn's MAP vaccine? And of course to raise awareness about this in Brazil! We have Portuguese info sheet available on the Crohnsmapvaccine website.

Take a look at Crohn's MAP Vaccine Heroes site on Facebook !


----------



## Poppysocks

I wonder if simply straying from Beef, Milk, and Dairy products would improve symptoms.


----------



## sir.clausin

Poppysocks: Well, since we already got crohns, the MAP are inside and is not going to move unless a vaccine or a shitloads of antibiotics does the trick. Then again, if the professor is right about MAP being in the water and air too then we are pretty fxxked unless we get our "blind" imunesystem up to speed. 

I would say thay dairy is anything than good for us, besides Häagen Dazs (ice Cream) that is ;D


----------



## Poppysocks

I wonder what the minimum amount to "invest" in the vaccine would be?


----------



## Karma

IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.

It says what the total required is, but it'd be good to see how far along everyone is.  I remember they used to do that when trying to raise money on Blue Peter   It'd be good if it updated in realtime too - so people could see their donations pushing it higher.  Maybe even a realtime scroller for 'last donations' or something!


----------



## jjk308

I'm dubious.  The theory that some bacteria or virus caused IBD has been around a long time with no success in treatment.
I suspect its opportunistic, just that the inflamed tissue from Crohn's gives it a favorable habitat.


----------



## JMC

jjk308 said:


> I'm dubious.  The theory that some bacteria or virus caused IBD has been around a long time with no success in treatment.
> I suspect its opportunistic, just that the inflamed tissue from Crohn's gives it a favorable habitat.


There has been a lot of success with treating MAP with antibiotics by a number of doctors in different countries. There is currently a trial going on, called "RHB-104".  It will be interesting to see their results when they are published. I do not believe antibiotics are the long term solution however, hence the need for the vaccine. 

I have heard the claims that it is an opportunistic infection before, but as with the claim that treatment has not worked, I have not seen any scientific papers published to support that claim. (There was an often quoted antibiotic trial in Australia which did not produce great results but the science was flawed and the results when analysed properly were actually quite good)


----------



## Poppysocks

Karma said:


> IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.
> 
> It says what the total required is, but it'd be good to see how far along everyone is.  I remember they used to do that when trying to raise money on Blue Peter   It'd be good if it updated in realtime too - so people could see their donations pushing it higher.  Maybe even a realtime scroller for 'last donations' or something!


They did the same thing in the Ron Paul Moneybomb campaigns and I agree it's a good idea to be able to see how close we are to hitting the target. If they could give everyone a certain day, and market it throughout the internet and everywhere else as much as possible I think they could increase their donations.


----------



## JMC

Karma said:


> IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.


I think it is a good idea. Does anyone else have any thoughts about what they would need to know in order to make a substantial donation?


----------



## Poppysocks

I don't understand why there is no link between MAP and UC, but there is definitely one between MAP and Crohns. So I guess UC is caused by something else? Not saying I have UC, although I was first diagnosed with Crohns, then 3 years ago I was diagnosed with Chronic Colitis. 

I always just thought Colitis was pretty much just Crohns except limited to the colon.


----------



## Mattie

JMC

Perhaps a target date by which they need to raise  the £80,000 to complete the MAP test ( I think it's November this year, but not sure) and a countdown to that date, so that donors can see how close we are.


----------



## WelshGuy

Mattie said:


> JMC
> 
> Perhaps a target date by which they need to raise  the £80,000 to complete the MAP test ( I think it's November this year, but not sure) and a countdown to that date, so that donors can see how close we are.


I see no benefit to putting a deadline.


----------



## Malgrave

The state of play of fundraising was posted last Sunday on the Crohn's MAP Vaccine facebook site:

https://www.facebook.com/crohnsmapvaccine


----------



## Crohn2357

Malgrave, do mapvaccine group need Turkish translation?
Is this the only page that needs to be translated?
http://crohnsmapvaccine.com/wp-cont...Vaccine_InformationSheet_June2014_ENGLISH.pdf


----------



## Malgrave

Crohn2357: Turkish translation would be great!

Can you please send me your email address (with a private message or send a message to the Crohn's MAP vacicine facebook site) so I can send you the word version. It is easier to work if you have a word version available ;-)

Thank you very much in advance!


----------



## JMC

WelshGuy said:


> I see no benefit to putting a deadline.


Deadlines are useful to get people to take action and provide a sense of urgency.  Without a clear time frame, people tend to think "it can wait until tomorrow" and before you know it, years have slipped by and nothing has happened.  Which is the story of the development of Crohn's treatments in my experience, decades slip by and virtually nothing changes!

£80,000 by November sounds like a good target to me


----------



## Poppysocks

JMC said:


> Deadlines are useful to get people to take action and provide a sense of urgency.  Without a clear time frame, people tend to think "it can wait until tomorrow" and before you know it, years have slipped by and nothing has happened.  Which is the story of the development of Crohn's treatments in my experience, decades slip by and virtually nothing changes!
> 
> £80,000 by November sounds like a good target to me


This is why I think it's a good idea to do a couple "Moneybombs". It's not really a deadline, just a day where everyone comes together to donate. It gets marketed heavily, passed onto many different crohns forums, other various channels, etc..

Because, like you said, without something like that, it doesn't really feel like your giving much.


----------



## Orchid

Poppysocks said:


> I don't understand why there is no link between MAP and UC, but there is definitely one between MAP and Crohns. So I guess UC is caused by something else? Not saying I have UC, although I was first diagnosed with Crohns, then 3 years ago I was diagnosed with Chronic Colitis.
> 
> I always just thought Colitis was pretty much just Crohns except limited to the colon.


The immune system is amazingly complicated and that is a childishly narrow view of the two diseases. They're not grouped together like animals in the same genus, they're grouped together because their symptoms are so alike. One of the current theories on UC is it's a true autoimmune disorder based on T-Cell overactivity in the colon while Crohn's research is largely currently focused on immune mediation problems, so it it maybe immune deficiency. Especially given many of the implicated genes are involved in immune signaling needed to detect and effectively combat bacteria. They couldn't be more unlike one another in terms of cause.

Sometimes I really wish I went the whole way and got a PHD in this field, it's so AWESOME.


----------



## Poppysocks

Orchid said:


> The immune system is amazingly complicated and that is a childishly narrow view of the two diseases. They're not grouped together like animals in the same genus, they're grouped together because their symptoms are so alike. One of the current theories on UC is it's a true autoimmune disorder based on T-Cell overactivity in the colon while Crohn's research is largely currently focused on immune mediation problems, so it it maybe immune deficiency. Especially given many of the implicated genes are involved in immune signaling needed to detect and effectively combat bacteria. They couldn't be more unlike one another in terms of cause.
> 
> Sometimes I really wish I went the whole way and got a PHD in this field, it's so AWESOME.


Childishly narrow? Oh ok, thanks for the clarification.


----------



## WelshGuy

Poppysocks said:


> Childishly narrow? Oh ok, thanks for the clarification.


Basically symptoms have no relation to cause. Two things with same symptoms can be vastly different. They have different names for a reason  Otherwise it would all be called Crohn's disease.

Although, there is a large debate with Psoriasis and Crohn's being linked some how. Both often exist in the same families. I doubt any research on MAP has been done with Psoriasis though, its not something people would logically link at first. But something tells me they are linked.


----------



## Orchid

Etiology in disease is only important insofar as ways it leads to treatment and research, it's not held in such high regard the way it is in zoology as a means of classification. Just because two diseases are considered similar doesn't mean their etiology is at all alike.


----------



## Poppysocks

Malgrave said:


> Hmm… I was just thinking the same right after I sent my previous reply...
> Would it indeed be possible to promote the fund raising so that every person donating e.g. £500 or more will have a free test during the development or right after the test is ready?
> Does anybody know if the test will be based on a blood sample or something else? If it's based on blood sample would it be feasible to offer this kind of possibility to the donors?
> If this was possible (even if it required travelling to London), they might be able to collect easily £100,000, maybe even to fund the whole project until the final completion…


This is a great idea. I'd give double that, possibly quadruple that right now if I knew I could get the test done.


----------



## Poppysocks

I emailed CCFA on the subject, this was their response.

Thank you for contacting the Crohn’s & Colitis Foundation of America (CCFA) through your recent email regarding MAP.  I understand you would like CCFA to consider support for an anti-Map vaccine.  Please review the information below and attached.

CCFA is well aware of MAP.  We have major research projects studying enormously complex bacteria, viruses, and fungi.  This study is known as our Microbiome Initiative.   To learn more about this project visit http://www.ccfa.org/science-and-pro...t-research-studies/microbiome-initiative.html

MAP is more frequently recovered from the intestines of patients with Crohn’s disease compared to people with ulcerative colitis and individuals without either disease.

However, several findings have caused many researchers to discount a causative role for MAP in Crohn’s disease. First, MAP cannot be detected in many patients with Crohn’s disease and has been frequently found growing in people without the disease. Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with Crohn’s disease. Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in Crohn’s disease, but would likely be associated with no improvement or worsening of disease caused by MAP. Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with Crohn’s disease because of the underlying immune dysfunction.  Clinical trials studying MAP and Crohn’s disease are ongoing.

In summary, Mycobacterium avium paratuberculosis may play a role in the development of Crohn’s disease as one of many different microbes that might act as a trigger for an abnormal inflammatory response in genetically susceptible individuals. But until more convincing scientific proof emerges, it cannot be described as a primary or the sole cause of Crohn’s disease. 

Dr. John Herman Taylor of England and any researcher is able to request support by contacting CCFA at: http://www.ccfa.org/science-and-professionals/research/grants-fellowships/

Thank you for reaching out to us!  If you have further questions, please email CCFA or call our toll-free number at 1.888.694.8872, Monday through Friday 9am-5pm EST to speak with an information specialist.


I kindly responded with my opinion below. 
*
However, several findings have caused many researchers to discount a causative role for MAP in Crohn’s disease. First, MAP cannot be detected in many patients with Crohn’s disease and has been frequently found growing in people without the disease. *

MAP has historically been a difficult mycobacteria to culture. It cannot be seen under a microscope. Only using proper analytical techniques can it be verified. Studies have proved this. In the Journal of Clinical Microbiology, a study was done which determined 92% of Crohns Disease Patients to have MAP, vs 26% of control using PCR.
http://jcm.asm.org/content/41/7/2915.full.pdf

Secondly, just because you are not showing symptoms of IBD, DOES NOT mean you are not infected. The MAP present may not be in an active disease state. H Pylori, for example, is well known to cause asymptomatic state, mild gastritis, stomach ulcers, and stomach cancer. YOU MUST TAKE THIS INTO ACCOUNT. Also, different people have different biochemistries and different genes and react differently to different things. Just because somebody has MAP in their system and is not showing active symptoms of IBD DOES NOT prove that MAP doesn’t cause Crohns. 

*
Second, medical therapy specifically targeted against MAP does not consistently alleviate the symptoms or eradicate the inflammation associated with Crohn’s disease. *

So because anti-biotic therapy against MAP doesn’t cure Crohns patients at a rate of 100% means MAP doesn’t cause Crohns? Koch Postulates have already shown that MAP causes Crohns, as well as Relman’s criteria. That is, MAP isolated from a Crohns patient was injected into a healthy animal which subsequently become sick with Johnes Disease.

http://www.ncbi.nlm.nih.gov/pubmed/3803136

People build up resistance to antibiotics. They are not a cure. And MAP is known to be hard to kill and resistant to anti-mycobacterial drugs.
*
Third, other medical therapies that suppress the immune system (e.g., immunosuppressants) or target specific inflammatory proteins (e.g., biologic agents) are effective in Crohn’s disease, but would likely be associated with no improvement or worsening of disease caused by MAP. *

I’m sorry, but you’re wrong.  If you were to treat a patient with Mycobacterium leprae (a mycobacteria more closely related to MAP) with a biologic drug, they would NOT get worse. Mycobacterium Tuberculosis is an exception not the norm.

http://www.cdd.com.au/pdf/publicati...eases Piecing the Crohn's Puzzle together.pdf
*
Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora of many people exposed to this organism through common food sources, but is present in greater quantities in patients with Crohn’s disease because of the underlying immune dysfunction.*

So why is it not as present in Pure Ulcerative Colitis? UC’ers have an immune dysfunction, but the bug is not found nearly as much in them as it is in Crohns patients. 

http://www.ncbi.nlm.nih.gov/pubmed/15951529
*
Clinical trials studying MAP and Crohn’s disease are ongoing.*

Yes, and CCFA should be at the forefront of this research! You guys represent us, you are the ones with the voices that can reach people that can make a difference. That difference is right here, this is it!


----------



## kiny

I think it's reasonable to question if MAP is directly involved in the inflammation, or an innocent bystander.

But their argument that anti-TNF would exacerbate the  MAP infection is wrong. It doesn't, in fact it does the reverse: http://www.ecco-jccjournal.org/article/S1873-9946%2812%2900017-7/abstract

MAP doesn't divide like TB does, that's why it takes months to get a reading on a culture.

Using immunosupressants to treat an infection is not unheard of, it's often necessary to stop nerve damage or organ failure, it's not as black and white as they think.


----------



## Poppysocks

kiny said:


> I think it's reasonable to question if MAP is directly involved in the inflammation, or an innocent bystander.
> 
> But their argument that anti-TNF would exacerbate the  MAP infection is wrong. It doesn't, in fact it does the reverse: http://www.ecco-jccjournal.org/article/S1873-9946%2812%2900017-7/abstract
> 
> MAP doesn't divide like TB does, that's why it takes months to get a reading on a culture.
> 
> Using immunosupressants to treat an infection is not unheard of, it's often necessary to stop nerve damage or organ failure, it's not as black and white as they think.


Yep.

Here is some quotes take from an article I posted above. 

- M. tuberculosis is a unique pathogen, even among mycobacteria, in that it is adapted to replicate both in the vacuole and cytosol allowing the pathogen to escape from the phagosome to produce disseminated disease.48 To understand the nondissemination of MAP, one must look to the “traditional mycobacterial infection”—leprosy, caused by Mycobacterium leprae, a pathogen that does not disseminate despite known treatment with azathioprine, steroids and TNF-a inhibitors.49
- The intracellular obligatory spheroplast form of MAP is incapable of replicating in the extracellular environment50 and is therefore incapable of disseminated disease.

http://www.cdd.com.au/pdf/publicati...eases Piecing the Crohn's Puzzle together.pdf

^^^See Issue 2


----------



## Orchid

Hence the primary issue with MAP detection, it's hellishly hard to not get a false negative because victim cells are less hosts to burst out of and more hotels to live in. I'm curious about the details of their new MAP diagnostic, did they isolate a protein chain similar to tuberculin that only causes a reaction in infected individuals?


----------



## kiny

Poppysocks said:


> Most clinicians accordingly believe that MAP may be a part of the normal intestinal bacterial flora


MAP is a mycobacteria, it is not part of the normal gut flora. It's intracellular like all other mycobacteria, T helper and cytotoxic T cells are invovled in mycobacteria infections. Maybe he should tell HIV patients that mycobacteria are part of the gut flora, they can stop taking their antibiotics and drink some yakult probiotics instead. Where do they find these people.


----------



## xmdmom

I was interested to see that The Crohn's & Colitis Foundation of America (CCFA)irecently passed on a notice for a research study being conducted by RedHill BioPharma that they "thought may be of interest to you." They do  go on to say CCFA is providing this information as a service and does not endorse the study or the study sponsor. "  

"A Clinical Trial for patients with Moderately to Severely Active Crohn's Disease

RedHill BioPharma would like to alert Crohn's patients about a study:
*A potential cause of Crohn's disease (CD) is infection with Mycobacterium avium subsp. paratuberculosis (MAP)*. RedHill Biopharma is currently enrolling the MAP US study to investigate RHB-104, a new antibiotic treatment for CD. MAP US, a Phase III randomized, double-blind, placebo-controlled, multicenter, parallel group study to assess the efficacy and safety of fixed-dose combination RHB-104 in subjects with moderately to severely active Crohn's disease, will enroll adult patients up to age 75 at sites across the US, Canada, Israel, Australia and New Zealand.

RHB-104 combines clarithromycin, rifabutin, and clofazimine in a novel treatment regimen for CD. remission at week 26 is the primary objective of MAP US; however, as MAP grows slowly, the duration of RHB-104 needed to achieve remission may vary. The Crohn's Disease Activity Index (CDAI) will be used to assess induction and maintenance of remission in patients through week 52. You may be eligible if you:

Are an adult patient up to 75 years old
Have a diagnosis of moderate to severe active Crohn's disease"


----------



## WelshGuy

Has anyone here done much research on psoriasis and crohn's? I know of a few families who have both, but no one person has both diseases at the same time in the family.. only ever an either/or.. which is exactly the case in my family too.

I'm wondering if its also MAP just affecting a different part of the body (regarding psoriasis).


----------



## Malgrave

I don't know about psoriasis, but below some links to a studies on the link between 

MAP and MS:

http://www.ncbi.nlm.nih.gov/pubmed/23439580

MAP and Diabetes 1:

http://www.gutpathogens.com/content/5/1/14

MAP and Blau syndrome (mentions also psoriathic arthritis):

http://www.hindawi.com/journals/ad/2010/127692/

I have seen a study also on MAP and arthritis in the past but cannot find it anymore...

Quite interesting!


----------



## wildbill_52280

Malgrave said:


> I don't know about psoriasis, but below some links to a studies on the link between
> 
> MAP and MS:
> 
> http://www.ncbi.nlm.nih.gov/pubmed/23439580
> 
> MAP and Diabetes 1:
> 
> http://www.gutpathogens.com/content/5/1/14
> 
> MAP and Blau syndrome (mentions also psoriathic arthritis):
> 
> http://www.hindawi.com/journals/ad/2010/127692/
> 
> I have seen a study also on MAP and arthritis in the past but cannot find it anymore...
> 
> Quite interesting!


If you haven't yet, learn about a concept called colonization resistance as function of the indigenous microbiota, it may be related to all these observations and yet again to reductions in diversity of microbes which may be corrected by a fecal transplant.


----------



## sir.clausin

So, I got my info.
___
Your 3 endoscopic biopsy path blocks.

Two labelled xxx and One labelled xxx

Report:

All tissues are extensively infiltrated with MAP positive cells both in the superficial mucosal layer and in the underlying lamina propria.

Conclusion: Active MAP infection


----------



## rollinstone

Sab, did you get the test done? That's good news isn't it? (Obviously not that you have the infection) but the fact that you now know what may be causing the issues... Maybe the SSI will allow your body to clear it. Either way, good luck bro, and keep us posted!


----------



## Poppysocks

sir.clausin said:


> So, I got my info.
> ___
> Your 3 endoscopic biopsy path blocks.
> 
> Two labelled xxx and One labelled xxx
> 
> Report:
> 
> All tissues are extensively infiltrated with MAP positive cells both in the superficial mucosal layer and in the underlying lamina propria.
> 
> Conclusion: Active MAP infection


sir clausin. How did you get this done? Is this from a colonoscopy that they took biopsies from?


----------



## pmitra0123

I have the same questions as poppysocks - how do they do this test? Where do you get the test done? Can you do it through a normal blood test center like quest?


----------



## Poppysocks

New research shows that delivery of ‪MAP‬ from showers and river aerosols may be routes of human exposure to the bacteria likely to be the predominant cause of Crohns Disease.  

http://www.mdpi.com/2076-0817/3/3/577


----------



## JMC

The case for MAP being the cause of Crohn's continues to strengthen:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064085/

I think it is particularly interesting that Dr Saleh Naser notes:

"It must be emphasized that much of the controversy concerning MAP and CD stems from the inconsistent methodologies that have been used in the detection and isolation of MAP, which have questioned the causal relationship between this bacterium and CD. These observed discrepancies result from the fact that the methods that were designed for the detection of MAP in animals with Johne’s disease are inappropriate for the detection of MAP in humans. Consequently, the need for more sophisticated and optimized methodologies are required so that there can be accurate detection and isolation of MAP in CD patients."

Prof John Hermon-Taylor has developed precisely the test that is needed, it just needs funding to complete it and the clinical trials.


----------



## WelshGuy

Found this which talks about bacteria and Crohns disease and the protein which is key to preventing bacteria from causing problems:



> Scientists sleuth out proteins involved in Crohn's disease
> 
> http://phys.org/news/2014-07-scientists-sleuth-proteins-involved-crohn.html


Also why has the funding bar on the MAP website been stuck at 15% since the start when people have claimed to have donated? Are they not even updating the website?

People may end up donating when the funding has been met, bit misleading...


----------



## JMC

WelshGuy said:


> Also why has the funding bar on the MAP website been stuck at 15% since the start when people have claimed to have donated? Are they not even updating the website?
> 
> People may end up donating when the funding has been met, bit misleading...


At the moment, the funding bar needs to be manually updated as there is no easy way to synchronise it with the actual funds coming in.  Updates are currently being posted manually on the Facebook page.  


There are a number of improvements that need to me made to the website and giving easier access to donation through JustGiving and Paypal and providing a live update (or as close as possible) to current funding status is on the list.  I can assure you it is not intended to be misleading, just a work in progress.


----------



## WelshGuy

Its easy to update a simple .css file to have:



> #divID{
> width: 25%;
> }


Its like a three second job with ftp... it doesn't really require automated php/html5 as thats a lot of code for something so minor.. a simply edit of CSS once a day in ftp is enough really.


----------



## AJC - Australia

I have not seen any mention of the crohnsmapvaccine website on Crohns & Colitis UK (CCUK) and have sent them several queries as to why that is….this is their answer. Tells you a lot about them doesnt it. 


_"With regard to your request to add a link from our website to www.crohnsmapvaccine.com, I can confirm that the Trustees of Crohn's and Colitis UK have made the decision that we will only add links from our own website to registered charities whose work has a direct relevance to people with IBD. As this is not the case for the website you have suggested, I'm afraid we are unable to help with your request."_

Why is it that the mainstream media is so reluctant to write about MAP?


----------



## rollinstone

Save that response by them, and when they're shown to be wrong take appropriate action for the prolonged struggle that made a lot of people endure for what ever reason.


----------



## Karma

I wonder what the organisation of the Crohn's Map Vaccine group is?  Are they a limited company, a charitable trust?  

If they were to register as a charitable organisation people might be able to use gift aid to make donations.  It also might encourage people to donate if they could see that it has the oversight and structure of a charity.

Has anyone contacted Larry Smarr about the vaccine and MAP test?


----------



## sir.clausin

I sent Larry a mail on db a long time ago, but never got an reply. It could be worth to try again. He certainly has resources


----------



## Karma

I'm sure it would be best coming from the medical team involved, if possible.  In his video he showed particular interest in the bacteria hypothesis.  It'd be good for the whole enterprise to have some big, rich, media savvy backers!  (not saying he's all of these!)


----------



## sir.clausin

This was before John Hermon and Co (me included) "shifted gear". I will speak to John when he is back from USA.


----------



## JMC

Karma said:


> I wonder what the organisation of the Crohn's Map Vaccine group is?  Are they a limited company, a charitable trust?


It is a group of volunteers (mostly Crohns patients and their family) raising funds to complete the research at Kings College London which has charitable status. The intellectual property is held by HAV Vaccines Ltd which will be responsible for manufacturing the vaccine once the trials have been completed.  The latter is currently seeking investors.


----------



## Karma

Ok.  Just read your reply more carefully.  So it is a charity and we can use gift aid.  Thanks for clarifying!


----------



## JMC

Karma said:


> Sorry, I get that.  I wondered what entity is receiving the money?  What oversight is there etc.  I'm sure everything is above board but I'm wondering if people might worry about giving money to something that isn't a registered charity.  Charities have all kinds of rules about oversight etc and Gift Aid can make 10.00 from a uk tax payer turn into 20% more.


Kings College London is the charity and receives the money. Why do you think money is going to something that isn't a registered charity?


----------



## Karma

It wasn't immediately clear on the website.  I'm reeling that so little has been raised so far!  It's a pity that it can't get in the papers somehow.   Some kind of human interest story about one of us who's -insert interesting, tough time- and backs the campaign.


----------



## JMC

Karma said:


> I'm reeling that so little has been raised so far!  It's a pity that it can't get in the papers somehow.   Some kind of human interest story about one of us who's -insert interesting, tough time- and backs the campaign.


The actual figure raised is much higher than the number shown on the JustGiving page as this does not show amounts that have come in via other routes e.g. cheques, direct bank transfers, etc.  I agree the donation via the JustGiving page, at the moment is surprisingly low, but I expect that to improve in the next few weeks. Below is the last total published which accounts for all money.


----------



## Malgrave

And actually there are more than one JustGiving page raising money for this since we have at least 5 individual fundraisers at the moment. Please take a closer look at:

https://www.facebook.com/CrohnsMAPVaccineHeroes


----------



## Karma

Well that's all good.

So why won't the charity link to a page raising money for a registered charity?

And, more importantly, are they supporting the effort?  If not, why not?  What do their supporters think?  

In my naïveté, it sounds like a reasonable attempt to -cure- Crohn's which needs support.  It sounds -exactly- like the sort of thing that people who donate would want.  Their website says they are committed to finding a cure.


----------



## JMC

Karma said:


> So why won't the charity link to a page raising money for a registered charity?


I assume you mean CCUK?  We can only speculate, but I would guess because they either do not understand the work being done or do not consider it in their interests to promote it.



Karma said:


> And, more importantly, are they supporting the effort?  If not, why not?


They are not currently supporting the effort.  I don't know why.  



Karma said:


> What do their supporters think?


I don't know



Karma said:


> In my naïveté, it sounds like a reasonable attempt to -cure- Crohn's which needs support.  It sounds -exactly- like the sort of thing that people who donate would want.  Their website says they are committed to finding a cure.


And what would happen to charities like CCUK if Crohn's was cured?


----------



## AJC - Australia

Who is the Larry Smarr fellow?

If crohns was cured, everyone at CCUK would need another job…..gastroenterologists would need to tighten their purse strings and billions of dollars would be taken from the pharmaceuticals. Curing crohns would be a disaster!


----------



## Karma

There's a story about MAP in bathroom showers in the telegraph yesterday.  A link was posted in there forum here today.

Is it worth someone in the MAP vaccine team want to contact the journalist and make them aware of the vaccine being developed?  Perhaps they might do a follow up story, or something


----------



## JMC

Karma said:


> There's a story about MAP in bathroom showers in the telegraph yesterday.  A link was posted in there forum here today.
> 
> Is it worth someone in the MAP vaccine team want to contact the journalist and make them aware of the vaccine being developed?  Perhaps they might do a follow up story, or something


Note, this story was published on the Crohn's Map Vaccine FaceBook page last week before the Telegraph article and one of the authors is Prof John Hermon-Taylor.


----------



## Wahoo

Karma said:


> I have a request!
> 
> I don't have a Facebook account but is there any way someone could ask the vaccine people:
> 
> 'What can we do now - until the vaccine is done.  Should we be boiling water, only drinking UHT milk etc?'
> 
> Perhaps there's something we can do to limit our exposure to this pathogen.  Maybe, at least for some of us, we can clear it in small volumes and limiting our exposure may help?


Hi, I've been wondering this myself. 
I found this study that (I think - please correct me if I'm wrong) suggests that UHT milk *may* not be safe: 
(sorry, blocked from posting link to study as I'm too new. Google this to find it: 
Rapid Assessment of the Viability of Mycobacterium avium subsp. paratuberculosis Cells after Heat Treatment, Using an Optimized Phage Amplification Assay)

"Incomplete inactivation was recorded for all four strains of M. avium subsp. paratuberculosis under all three time-temperature conditions studied."
Though they do say clearly:
"It must be emphasized that the experiments reported here were not designed to determine the ability of commercial HTST milk pasteurization to inactivate M. avium subsp. paratuberculosis. For many reasons, continuous-flow HTST pasteurization as applied to commercial products cannot be simulated adequately under laboratory conditions, and direct comparison to the real situation may not be possible considering the fact that the wild strains may be less or more heat tolerant than field isolates or type strains used in the laboratory. Rather, the objective of this research was to validate the optimized phage amplification assay and its use for the rapid detection and enumeration of viable M. avium subsp. paratuberculosis cells after heat treatment. Our results clearly demonstrate that the method could be employed in place of conventional culture to speed up the acquisition of results during inactivation experiments involving spiked milk samples. "

Sounds like they should be able to use this technique to assess actual samples from the supermarket, which would obviously be very interesting. 

I live in Australia, and have started restricting our family to dairy sourced from QLD, as Johne's disease is endemic in the southern states, especially Victoria and Tas. Western Australia and the Northern Territory are supposedly completely free of Johne's disease... this is one thing that makes me question the MAP hypothesis - I don't think they have lower rates of crohn's in those states (though I've never managed to find data - any idea how I could?).


----------



## JMC

There are a number of research papers you will find here, under advanced reading.  Remember exposure to MAP is not enough, there are other factors including genetic susceptibility, so it is not as simple as to say that certain areas of the country do not have Johne's disease, yet still have Crohn's.  Also MAP is _everywhere_, in water, on plants, in meat, in diary products, so there is no one, simple infection route.


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## Karma

In the UK, UHT is a different, higher temperature, treatment which turns the milk into long-life.  

As I mentioned somewhere else, I'm also using a bacterial level water filter.

I avoid the various dodgy ingredients that have been mentioned on here and I'm also extra careful about hygiene.  I wonder whether a tummy bug to most people can result in a flare for me.


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## VilliVagabond

I spoke with Dr. Chamberlin (Doctor in the USA willing to prescribe anti-MAP therapy)...he mentioned the bug is remarkably difficult to remove (almost impossible to eradicate completely). 

When I mentioned that I have had tremendous success on the SCD diet, he seemed unsurprised, saying that there is the possibility that the lack of complex carbohydrates may alter the bacteria's ability to produce energy in some way. 

Has anyone spoken DIRECTLY with the Dr.? Also, sorry for the dumb quesiton, but is there any DIRECT evidence that this has been used in humans / worked?

Thanks guys! We're getting there. We're gonna get to a cure soon.
Alex


----------



## VilliVagabond

I realize my above post wasn't clear: I meant to say, with Dr. Taylor. Has this vaccine been tested on humans?


----------



## AJC - Australia

he needs $MILLIONS to do a 'human trial' of the modern t cell vaccine….hence the fundraising. 

it has, however,  been trialled and successful on mice and cattle.


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## VilliVagabond

Definitely understand the financial requirement. I am just curious why he's collecting all this cash without even having tried it on, say, 10 willing patients. Hell, I'd do it fo free and pay for my own vaccine...


----------



## VilliVagabond

In any case: making a $100 dollar donation. Want this to happen. He also talks about "investment," not donations, for the actual human trial, which leads me to believe those contributing funds will earn some upside when the vaccine goes public (if it works).


----------



## rollinstone

Would be nice if people were allowed to test those willing to take the risks but unfortunately there's too many legality and "ethical" issues. It's really frustrating actually.


----------



## Lady Organic

JMC said:


> The case for MAP being the cause of Crohn's continues to strengthen:
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4064085/
> 
> I think it is particularly interesting that Dr Saleh Naser notes:
> 
> "It must be emphasized that much of the controversy concerning MAP and CD stems from the inconsistent methodologies that have been used in the detection and isolation of MAP, which have questioned the causal relationship between this bacterium and CD. These observed discrepancies result from the fact that the methods that were designed for the detection of MAP in animals with Johne’s disease are inappropriate for the detection of MAP in humans. Consequently, the need for more sophisticated and optimized methodologies are required so that there can be accurate detection and isolation of MAP in CD patients.


Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?

Lets take C-difficile another bacterium which I also just read about which seems to be more common (or more active) in IBD patient than in the rest of the population. We think C-difficile does not cause IBD, but is rather often ''associated'' or in other words more present in IBD patients. 
From my readings, C-difficile can even mimick symptoms of CD including inflamed thickening, blood and pus in the colon. One other risk factors and trigger of C-difficile and for the infection to become symptomatic is using antibiotics... Antibiotics destroy the healthy gut bacteria and without healthy bacteria, C-difficile grows out of control into overt chronic disease, all of wich of course can be concomittant with active CD or more at risk of happening if ill with CD. 

About Johne's in cows... In meat and cattle/bovine industry in North America, antibiotics are used A LOT in order to force the bovine to eat more corn and food which are not suitable to their stomachs... Could this abusive use of antibiotics in cows destroy their gut flora, thus impairing their immune defence mechanism to fight MAP or C-difficile? The impaired gut flora and defence could therefore make the bovine not strong enough to living normally with MAP as a asymptomatic carrier or to properly fighting it and which then finally results in overt Johne's disease???

Johne's would develop in the ileum (only?). I didnt read about ulcers, about blood or mucus, about joint, eye or skin issues, about disease in the stomach, colon or any other part of the digestive system of the cow which are on the contrary present in most CD patients... It is a minority of CD patients who only have a problem in the ileum without colon, joint, eye, skin, fistulas, or whatever else issue... Many CD patients dont even have a problem in the ileum which was my case in my first years. How is Johne's disease thought to be so similar to CD to think MAP causing Johne's = MAP causing crohns? I'd like to understand better this theory. 

When I read about Johne's (ileum), I think more of a disease like C-difficile (colon): an infection bacterium which targets one organ specifically rather than crohn's which is systemic (full body). I think of the link between antibiotics mega-use in cows and MAP overgrowth resulting in digestive illness and antibiotics and C-difficile overgrowth in humans resulting in digestive illness too. CD is everywhere from mouth to anus, not only in the ileum...Frankly I dont understand the relationship between Johne's and CD. Please help, i'd like to understand better this theory in easy terminology if possible.

sorry for this long post!!!


----------



## Poppysocks

Lady Organic said:


> Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?


http://jcm.asm.org/content/41/7/2915.full.pdf

Here is a study using proper PCR methods that detected the mycobacterium in 92% of Crohns patients vs 26% of control. 




> Johne's would develop in the ileum (only?). I didnt read about ulcers, about blood or mucus, about joint, eye or skin issues, about disease in the stomach, colon or any other part of the digestive system of the cow which are on the contrary present in most CD patients... It is a minority of CD patients who only have a problem in the ileum without colon, joint, eye, skin, fistulas, or whatever else issue... Many CD patients dont even have a problem in the ileum which was my case in my first years. How is Johne's disease thought to be so similar to CD to think MAP causing Johne's = MAP causing crohns? I'd like to understand better this theory.


Skin issues are prevalent. There's pictures where the Cows lose the color of their hyde. Also, we are completely different animals to cows, just as we are completely different animals to mice. The disease may effect one animal differently than another, and vice versa.


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## JMC

Lady Organic said:


> Hi I'd like to understand more... I have read the article... They mention that studies conclude of the role of MAP in 30 to 50% of CD patients. In the remaining patients, MAP is not detected thus it is assumed MAP does not play a role in the remaining (50-70%) of all of CD patients. How can they be sure MAP is ''causative of '' and not simply ''associated with '' CD, in the proportion of infected CD patients, just like c-difficile infection is more prevalent in IBD? Could MAP cause another form of IBD or a sub-type of CD?


I took it to mean that _existing _studies showed that MAP had played a role in 30-50% of Crohn's cases.  Dr Naser emphasises that previous testing methods were not completely reliable so it will be interesting to see the outcome of the Redhill Biopharma (RHB-104) study where they have a better test.  When methods that are accurate for detecting human MAP are used I believe the figure is between 90 and 100%.

MAP was proven to be causative by meeting Koch's postulates.   Basically, MAP was cultured from the lymph nodes of a human patient who had Crohn's then used to infect a goat who developed Crohn's like symptoms and was found to have MAP in its gut.  If you get infected with MAP it will cause further immune dysregulation leading to leaky gut and other bacterial infections.


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## rollinstone

That's what's frustrating, is that people in the medical industry ignore koch's postulates, it's fking ridiculous haha, they just ignore it as if it doesn't exist. I posted an open letter written by various physicians a while ago, they talk about their own journey and success of going on anti-map medication, granted it was a small number, they were all 100% better, to me it's obvious that map IS without a doubt at least ONE cause of ibd.


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## Orchid

It's because they're not researchers and it's not their place to comment on things that aren't anywhere near approval by the FDA or any other organization that handles medicine. If they open their mouths and someone gets hurt they can get bit in the ass.


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## rollinstone

That's got nothing to do with acknowledging scientific proof, which is what koch's postulates is, the scientific criteria required in prooving causation. And seriously, don't get me started on what a load of bollocks the FDA is, they're criminals backed by richer criminals, (and I'm making reference to countless people that have died of cancers or kids with epilepsy that could have been avoided had the FDA had really cared or looked at the evidence that was so plain to see with benefits of extracted marijuana oil...) FDA are in bed with big pharma and have been for decades. They are far more interested in money than your wellbeing.


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## Orchid

If they even acknowledge it it could be taken as endorsement. It's easy for us to bray about these things but their livelihoods are on the line whenever they open their mouth on anything vaguely related to medicine.


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## rollinstone

Sorry, I could agree with you but then I feel like we'd both be wrong, the only livelihoods on the line are those who are really sick and can't get what they need, it's been this way for a long time. I'm not saying they go and legalise anything with anecdotal success stories, obviously they have to cover their ass, but things that have already had studies done and shown to be effective and ALOT safer than what pharmaceuticals are currently available... Go and watch Dallas buyer's club if you can be bothered, that's a prime example of what's still going on... It's fking sad really, It's morally disgusting.


----------



## Poppysocks

Joshuaaa said:


> Sorry, I could agree with you but then I feel like we'd both be wrong, the only livelihoods on the line are those who are really sick and can't get what they need, it's been this way for a long time. I'm not saying they go and legalise anything with anecdotal success stories, obviously they have to cover their ass, but things that have already had studies done and shown to be effective and ALOT safer than what pharmaceuticals are currently available... Go and watch Dallas buyer's club if you can be bothered, that's a prime example of what's still going on... It's fking sad really, It's morally disgusting.


I'm with you. They are all morally bankrupt. They have their eyes on one thing. MONEY. That's all the United States is about.


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## Orchid

I'm glad you understand the souls of us medical researchers so well. 

It's not like we have loved ones who get sick too.


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## rollinstone

Nobody said you didn't, what you're trying to argue is that the FDA put their "livelihoods" on the line and what I'm saying is tell that to the ghosts of people who have died when the FDA conviscated medication that was keeping them alive because there hadn't been "trials" on it. I have a scientific mind I understand the importance of testing things but take marijuana for example, do you have any idea how long people have known that it can cure cancer for? Big pharma tried and are still trying their damnedest to restrict it's availability, and they did it largely through it not being passed by the FDA. Now on to the relevance of this thread, if you're a medical researcher you'll be aware of koch's postulates, I don't come on these forums to argue but when something's met the scientific criteria to prove "proof of causation" the case is closed. They can't deny it anymore, it's like saying the earth is flat.


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## VilliVagabond

With regard to the above posts - I am a businessman, and totally agree - these companies are in it for the profits. If Crohn's and other autoimmune diseases get cured, Abbvie (maker of Humira) becomes completely bankrupt (over 50% of their profits are derived from this one medication). 

In my personal opinion, you won't see these companies (the large ones with the resources) delve into alternative therapies or support new ones until the patents on their existing drugs run out and generic manufacturers can make duplicates for cheap (metrandolzione (SP?) vs. Flagyl, substitute vs. vicoden)

With all that being said, the power, once again, must be derived from the people. The only way to beat this is to start demanding alternative cures through crowd source funding - unfortunately, those suffering must support the efforts of the people who really want to help (Professor Taylor). What I am saying is...let's stop focusing on the bad, and start focusing on the good, and figure out a plan on how we are going to accomplish the funding for this study and vaccine. I'm willing, open, and will help in any way....can we organize a nationwide fundraiser (and make sure not a cent of it goes to the CCFA who's backed by big pharma?). Can we push our family members to make small 25 - 50 dollar donations?


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## lbligh

Johnson & Johnson makes Remicade (second most profitable drug in the world)  and they are investing in microbiome biotechs.

http://www.xconomy.com/boston/2014/07/16/seres-makes-push-for-first-drug-and-ipo-of-microbiome-era/

http://www.washingtonpost.com/blogs...ating-your-allergies-may-lie-in-your-stomach/


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## JMC

lbligh said:


> Johnson & Johnson makes Remicade (second most profitable drug in the world)  and they are investing in microbiome biotechs.


I don't see microbiome biotechs providing a cure for Crohn's before the patents on Remicade run out _next year_.  The original patent was due to expire this year, but they got an extension.

"Remicade, the autoimmune disease blockbuster, generated more than *USD 7bn* in worldwide revenue in 2012."  And people wonder why there are obstacles to raising $5M to prove a vaccine that could cure Crohn's?


----------



## Lady Organic

Poppysocks said:


> http://jcm.asm.org/content/41/7/2915.full.pdf
> 
> Here is a study using proper PCR methods that detected the mycobacterium in 92% of Crohns patients vs 26% of control.
> 
> 
> 
> Skin issues are prevalent. There's pictures where the Cows lose the color of their hyde. Also, we are completely different animals to cows, just as we are completely different animals to mice. The disease may effect one animal differently than another, and vice versa.


Hi Thank You I have read the article. In the control group witn Non-IBD, 9 patients tested positive for MAP, all of them had some colonic, digestive issues such as IBS, colon cancer or simply diarrhea, etc. How does the Koch postulate is sure digestive disease in these goats is more of a crohns than an IBS or orther digestive conditions? Were ulcers seen, granulomas?

I am still not convinced that the disease other animals develop wether in their natural environnement or in the case of Koch's postulate is the same as CD. Just in humans, UC is so similar to CD (I have UC-like crohn's), yet they are not the same and eventhough they respond to the same drugs, they respond differently to Enteral diets, GI Dr John Hunter LOFFLEX diet and Dr Jean Seignalet hypotoxic diet.

It would be interesting to measure the MAP activity of a patient when his CD is active and measure it AFTER he goes into NATURAL remission without a medication such as immuno-supressant. has this been done? Some people DO go into remission periods without any treatment or lifestyle change.

It is known that the gut is populated with higher amount of bad bacteria when the disease is active and that it comes back to a normal level when the disease enters remission. This is the case with other chronic inflammatory diseases such as RA for instance. On the MAP website, it is mentionned immuno-supressant help make slow down MAP proliferation. But, what about all those patients who go into natural remission without immuno-supressants and who continue to eat meat and drink dairies and contaminated map water? They prolly too come back to bacteria normal levels without medical intervention when in remission... 

To me, it is still not clear that MAP is causative. I still feel MAP is associated with CD and happens to be there and take advantage of a already weak host to proliferate, just like c-difficile would do.  I think, the gut flora is already disrupted since a long time in humans and in animals in the western world, and then MAP or other bacteria have wide open door to invade and proliferate potentially causing more or different damages (super-infection?).  some predisposed individual, who eat bad food such as most animals here (who predominantly eat GMO corn and soy), and us too who eat too much food which does not protect our gut flora (only vegetables, fruits and fiber are protective and they are extremly lacking in western diet), combined with the high amount of antibacterial agents used for prevention in animal industry and us eating that meat and milk and water FILLED with antibacteria, inevitabily disrupt gut flora, gut permeability and then most of us go on to develop chronic illnesses of all kinds at some point in life. Most cancers are also in the same bag of chronic conditions which develops over decades. Without proper protection and overuse of antibiotics in meat and possibly water, our colon gets weak in the western world with all sorts of colon diseases, thus we are more at risk of being targetted as hosts for bugs. Therfore I still think MAP is associated rather than causative, unless I read more convincing evidence of course. I definately encourage this research and trial, anything that is not detrimental to our body, like we are used to, I encourage greatly and I am thinking of donating. I have no doubt anti-Map vaccine can help as a treatment, as regular antibiotics help too in reducing symptoms of CD and putting some cases in remission, but to cure? In the long term? I have read in the thread or in the MAP website that the vaccine has been tested on humans with CD and it worked for some cases who tolerated it... Am I correct? Could I have the link please? For how long was the remission maintained after treatment? so many questions..., but interesting.

 I think it is important to remain open to all possibilities when searching for an answer. being close minded prevents people for experimenting and exploring and getting closer to a solution. It is clear many people and researchers in the FDA have hidden agendas and it is true pharmaceuticals and pesticides and GMO Magnas sleep with the gvmt. Those companies are extremly rich and they finance extensively those parties $$$ in different legal or illegal ways. In return, the political leaders have no other choice but to push the machiavelic plans and stop any controversial issues raised by other independant researchers in search for morality and safety that contredicts the products of their contributors. Most researchers who studied the effect of GMO for instance have lost their job or subventions in university settings. University researchers lose their job if they start to discover things that are not pleasing to the eye of the MAFIA. Thats not what I call research. thats what I call a CRIME, CORRUPTION. The first quality a researcher should have or any scientitist should have is CURIOSITY and desire for exploration and thats what should be encouraged. Outcast with strong ideology and character with new ideas or proposition are often being severly rejected by the core, the order, the syndicate. The human being is the same since its creation...  That rejection and shut up process is not scientific, it's ANTI-SCIENTIFIC!!!  Rejecting ideas and findings without explorating it reasonably is primitive and not part of the true scientific mind.

two years ago, on a trip in India, Hillary Clinton was not happy and warned  Indian agricultural and health Minister about ruining the chances of better economy in India after he decided to suspend the plantation of ''GMO-Round up-ready Monsanto eggplants'' due to solid doubts of carcinogenic effects of GMO and pesticides raised by Dr Seralini in a 2 year study on rats... Seralini has been violently criticized, his article has been retracted-taken off in the scientific journal it was first published in. But after a consortium of more than 300 scientists world wide who signed a petition, another journal finally decided to publish the study again very recently.


----------



## JMC

Lady Organic said:


> It would be interesting to measure the MAP activity of a patient when his CD is active and measure it AFTER he goes into NATURAL remission without a medication such as immuno-supressant. has this been done?


It hasn't been done because until very recently it was very hard to accurately test for MAP.



Lady Organic said:


> I think it is important to remain open to all possibilities when searching for an answer. being close minded prevents people for experimenting and exploring and getting closer to a solution.


I completely agree.  If you believe the MAP theory is wrong, you should still support further research so that we can prove conclusively it is wrong.  If MAP is not the cause, it significantly narrows the field of research for a cure for Crohn's.  The only way we lose, is if the research is not done.


----------



## Mommabear

Hello all, new to the forum and to the disease as my son was just recently diagnosed. I have been looking into all the possible treatments and am intrigued by the vaccine idea. I am not quite clear though about the MAP test, or lack of a test. Dr. Harmon-Taylor needs money to commercialize his test? Isn't Redhill also developing a test? Does anyone here know if these tests are the same? I have also seen the name of Dr. Nasser in Florida who has also developed a test ( or not ). And where does he fit in with the MAP theory? Sorry if I seem a bit dense, but I have read so much about Crohn's for the last two weeks and everything is beginning to blur. Hopefully some patient person can set me straight. Thanks!


----------



## Malgrave

VilliVagabond said:


> With all that being said, the power, once again, must be derived from the people. The only way to beat this is to start demanding alternative cures through crowd source funding - unfortunately, those suffering must support the efforts of the people who really want to help (Professor Taylor). What I am saying is...let's stop focusing on the bad, and start focusing on the good, and figure out a plan on how we are going to accomplish the funding for this study and vaccine. I'm willing, open, and will help in any way....can we organize a nationwide fundraiser (and make sure not a cent of it goes to the CCFA who's backed by big pharma?). Can we push our family members to make small 25 - 50 dollar donations?


YES WE CAN! I have raised €6,500 (8,750 USD) for this vaccine in two months! From relatives, friends, colleagues, friends of friends, parents of colleagues, you name it. We are 7 individual fundraisers at the moment, "Crohn's MAP Vaccine heroes", but we would need MORE people to get activated and donate and ask their loved ones to donate too, for themselves!


----------



## AJC - Australia

Mommabear said:


> Hello all, new to the forum and to the disease as my son was just recently diagnosed. I have been looking into all the possible treatments and am intrigued by the vaccine idea. I am not quite clear though about the MAP test, or lack of a test. Dr. Harmon-Taylor needs money to commercialize his test? Isn't Redhill also developing a test? Does anyone here know if these tests are the same? I have also seen the name of Dr. Nasser in Florida who has also developed a test ( or not ). And where does he fit in with the MAP theory? Sorry if I seem a bit dense, but I have read so much about Crohn's for the last two weeks and everything is beginning to blur. Hopefully some patient person can set me straight. Thanks!


very understandable Mummy bear. 
good for you for looking into it…
There is no 'map bacteria test' currently…well, there isnt one that is available to the masses, but dr hermon taylor and others have the ability to test for it in resected gut tissues….(gut that has been operated on)….You are right, Redhill have a human trial for anti biotics that are targetting at the MAP bacteria and that is happening right now, with Dr Naser in the USA. 

So there is Dr Hermon Tylor and Dr Naser working on a clinical diagnostic test that will enable patients to be tested for having a MAP bacteria infection, until now, this has been unavailable die to the difficult nature of the bacteria.  

Dr Naser, Dr Borody and others are younger than Dr Hermon-Taylor…it is Dr Hermon-Taylor who is the 'elder' and the younger doctors are following his and Dr Crohn's lead. 

Hope that helps….

Good luck with your son - getting the inflammation under control is paramount….


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## Mattie

And Professor Hermon-Taylor is the one currently working on a vaccine for Crohn's which can be used to treat infection as well as preventing it - hence the current appal for funding:

www.crohnsmapvaccine.com

Extensive tests in mice and cattle have shown the vaccine to be powerful and safe.

Please read the FAQ's page for more info.


----------



## JMC

Mattie said:


> Please read the FAQ's page for more info.


The FAQs are an excellent source of information which are constantly being updates as new questions, mostly from Crohn's patients, are being raised.


----------



## Mommabear

I just donated. I also understand the cynicism about big pharma, but I also have faith that a couple of smart scientist and/or investors will get involved not simply because it is morally the right thing to do, or because they are personally involved in some way with this horrible disease, but they are going to realize that a "cure" will also bring them wealth. There are small start ups working on a pill form of good poop ... and others will do the same for other treatments. But a lot of times of course, there just isn't enough money. I am including a link to a TED talk that discusses funding of new treatments, with the hope that it might prove useful. www.ted.com/talks/roger_stein_a_bold_new_way_to_fund_drug_research#t-657496


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## lbligh

I wish they could figure out a way for U.S. donors to get a tax break. Maybe that is in the works. (Our family made a rather large donation regardless.)


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## AJC - Australia

there must be a way to get a tax break if you are in the US and donate to a charity in the UK???? Surely????

maybe there is a tax expert on this forum? Might be worth asking……?

thank you for helping.
i do hope it is the cure~!


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## xeridea

What do you all think about the chances of having any traction with the Bill & Melinda Gates Foundation? They have a particular interest in "ENTERIC AND DIARRHEAL DISEASES". That's a  pretty spot-on lay-man's description of IBD as I see it.


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## rollinstone

Definitely worth giving them a call, but as far as I know they can only do charities... But yeah, definitely worth a try.


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## AJC - Australia

not sure they donate to countries like England, i think they are more interested in helping third world countries? Their website is very very good, you can see all the information there as to who they might support. I remember looking at it and reached a dead end.


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## Mommabear

Yes, I was wondering about the same thing. I am also thinking about places like Kaiser , ie HMO 's. I should think they would have a financial incentive to find a true remedy. I have never, ever tried to raise money and I do not want to make a mistake and blow any chances, but I am willing to approach these organizations or help someone who perhaps has more experience.


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## JMC

xeridea said:


> What do you all think about the chances of having any traction with the Bill & Melinda Gates Foundation? They have a particular interest in "ENTERIC AND DIARRHEAL DISEASES". That's a  pretty spot-on lay-man's description of IBD as I see it.



We have looked at it in the past, unfortunately, the foundation does not fund "Projects addressing health problems in developed countries": http://www.gatesfoundation.org/How-We-Work/General-Information/What-We-Do-Not-Fund


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## JMC

Mommabear said:


> I am including a link to a TED talk that discusses funding of new treatments, with the hope that it might prove useful. www.ted.com/talks/roger_stein_a_bold_new_way_to_fund_drug_research#t-657496


Mommabear,
Speaking as someone who has worked in finance, this is a superb talk!  I sent you a PM with my email address if you want to discuss further.


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## Karma

Surely crohns affects people, and will affect people increasingly in the third world?


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## JMC

Karma said:


> Surely crohns affects people, and will affect people increasingly in the third world?


I took it to mean that they were interested in funding health issues that _exclusively_ affected the third world


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## mf15

Just thought I would add this info from Korea.
Johne's first discovered in herds 1967.
Look at the low but rising IBD incidence rates from 1986 on, cant find
older data. MAP can have long incubation period, but you don't need an actual
infection, the MAP antigen is everywhere.
Faroe Islands have the highest incidence rate of IBD in the world, I wonder
why. Too bad cannot find, Johne's disease statistics for Faroe Islands.
But it was/is a colony of Denmark, Denmark high in IBD and Johne's.
Old Mike
http://www.ncbi.nlm.nih.gov/pubmed/22749233

http://www.ncbi.nlm.nih.gov/pubmed/17941073 

www.ncbi.nlm.nih.gov/pmc/articles/PMC2871616/#!po=1.92308


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## Mommabear

I am looking into setting up a non-profit in the US for tax purposes for folks living here who donate to the vaccine, unless someone has either already done it, or is in the process
( which I would appreciate knowing about, so please let me know)

 I think even if this vaccine does not work, if everyone who has Crohn's or knows someone who suffers from it, donated simply a dollar or two ( or pound or euro )we could then move this thing forward and know for sure. For the doubters, they could say, "see I told you so" and if it did work we could all celebrate. I do not understand the resistance, particularly if there is even a hair thin possibility that it might work. What is one dollar, or pound or euro ?  Alone, nothing, but amassed maybe permanent remission.


----------



## Mattie

I so agree Mommabear. We need to put this to bed and find out once and for all if this is the treatment we have all been waiting for. A few pounds/ dollars/ euros from those affected or relatives/ friends/ colleagues of those affected would see us well on the way. If it proves to be the success it is expected to be, surely we all need it to be available as soon as is humanly possible.

www.crohnsmapvaccine.com


----------



## JMC

Mommabear said:


> I am looking into setting up a non-profit in the US for tax purposes for folks living here who donate to the vaccine, unless someone has either already done it, or is in the process
> ( which I would appreciate knowing about, so please let me know)


I believe this has been sorted out, so you don't need to do it.


----------



## Mommabear

My son was diagnosed the end of June and he already has a fistula! He will be seeing the surgeon tomorrow. We were hoping he would be able to participate in the Redhill Anti-Map trial, but the damn fistula ruined that idea ... at least for now. 

The number of doctors who are participating in the trial is significant and so far it is limited to the USA and Canada. They are going to open it up to Europe soon. I am assuming these doctors also believe in the MAP theory ... I think more people believe this theory than it appears.

 Just an observation.


----------



## VilliVagabond

1.) Can someone provide a link where tax deductible donations can be made in the US?

2.) I am worried that this vaccine will be bought by big pharma and then will disappear -> they'll claim it doesn't work, and then will shelve it to keep profiting off of Humira and other biologics.


----------



## Mommabear

I have thought about the same thing! Hopefully Dr. Hermon-Taylor won't let that happen.


----------



## xeridea

Dr. Hermon-Taylor's vaccine is already owned by a pharmaceutical company. I would like to be positive and think that this will actually get to trials, prove its efficacy, and hopefully come to market. 

From http://crohnsmapvaccine.com/vaccine/: "The intellectual property of the Vaccine is owned by the company HAV Vaccines Ltd., who are seeking investments totaling this amount to fund manufacture and trial of the Vaccine."

Maybe what folks who have correspondence rapport with professor Hermon-Tayloer can get a clarification on what role HAV will play in the trial and since I would figure HAV is a commercial enterprise, what separates the non-profit aspect of the trial from HAV's interests.


----------



## maile

It's very difficult to find the Just Giving page. When i type in something like map vaccine donation.... It does not pop up. I just found it through a link on this thread. I think that's why very few people donate. For whatever reason you can't google it or find the donation site.


----------



## Mattie

The easiest way to find the Just Giving page is to access it via the Crohns Map Vaccine site:
Www.crohnsmapvaccine.com

If you scroll down to the bottom of the home page and click on 'donate now' you will see the link to Just Giving.

Hope this helps.


----------



## VilliVagabond

I hate to say this, but HAV Vaccines will MOST definitely be looking to sell the rights to a large pharmaceutical company. If you look for HAV vaccines online, there is no website....the company is likely a private holding company made up of an individual group of investors who have invested their own capital and will be looking to profit from a sale after a phase 1 trial proves successful (similar to other small biotech development companies that develop and sell.)

The important thing here is to ensure that we keep this I'm the light. Follow the trial. Ask questions. Make donations, but demand that you are kept in the loop to prevent this from disappearing. The transparency must come from advocates of the disease who follow this process like hawks.


----------



## Karma

It looks like people are being asked to fund the test not the vaccine?  It's a pity it couldn't have been set up as a charitable, cooperative trust etc.  We could have all become shareholders ourselves then.


----------



## AJC - Australia

I believe there is still the opportunity to be a stakeholder in the whole thing…and from what I can tell about Dr Hermon-Taylor, he will do whatever he can to make sure his lifes work results in the cure for crohns for ALL OF US. That is his mission. He is 77, i am sure money is not that important to him right now, aside from getting the funding to fulfill his passion….to prove MAP is the cause and the t-cell vaccine the cure.


----------



## VilliVagabond

There are two parts of this process.

1.) Donations to fund the test
2.) Financing to fund the production of the vaccine, and the stage 1 clinical trials.

After the clinical trials, the vaccine will be sold to a large pharma company for distribution. My skepticism and worry was centered around the idea that it may be sold to a company like Abbvie, who would then shelve the vaccine in favor of continued promotion of Humira.


----------



## Poppysocks

VilliVagabond said:


> There are two parts of this process.
> 
> 1.) Donations to fund the test
> 2.) Financing to fund the production of the vaccine, and the stage 1 clinical trials.
> 
> After the clinical trials, the vaccine will be sold to a large pharma company for distribution. My skepticism and worry was centered around the idea that it may be sold to a company like Abbvie, who would then shelve the vaccine in favor of continued promotion of Humira.


This is why the internet is a great thing. The people with crohns who are aware of MAP won't let that happen.


----------



## 7vNH

VilliVagabond said:


> 2.) I am worried that this vaccine will be bought by big pharma and then will disappear -> they'll claim it doesn't work, and then will shelve it to keep profiting off of Humira and other biologics.


My sisters husband worked for a small company that had a promising islet cell process.  The company had plans to really change the treatment landscape for diabetes.  Some big pharma company came along and made them an offer that made the owners incredibly rich, and the company was sold.  The therapy was never heard from again.  Nobody can come along and pick up the work, or they'd be stepping on patents, so the status quo of suffering continues.

What we need is a way to wrest control from the established companies, but they are so loaded with money, they can usually simply buy off the owners of the paradigm changers.  If each one of us was an owner, though, that might be a solution.  If 100,000 people put in $50 each, which would put them in the treatment queue, then if a buyout came along at $100, or $500 or whatever, the answer would be "no, I won't give up my chance at a cure for fifty or a couple hundred bucks"


----------



## AJC - Australia

We all need to be on our game to make sure that doesnt happen….there is no doubt in my mind that a big pharma company, if they were aware there was a cure, they would TRY to buy out JHT for millions….millions and millions, hundreds of millions!


----------



## AJC - Australia

7vNH said:


> My sisters husband worked for a small company that had a promising islet cell process.  The company had plans to really change the treatment landscape for diabetes.  Some big pharma company came along and made them an offer that made the owners incredibly rich, and the company was sold.  The therapy was never heard from again.  Nobody can come along and pick up the work, or they'd be stepping on patents, so the status quo of suffering continues.
> 
> What we need is a way to wrest control from the established companies, but they are so loaded with money, they can usually simply buy off the owners of the paradigm changers.  If each one of us was an owner, though, that might be a solution.  If 100,000 people put in $50 each, which would put them in the treatment queue, then if a buyout came along at $100, or $500 or whatever, the answer would be "no, I won't give up my chance at a cure for fifty or a couple hundred bucks"


that is very sad about the diabetes…what was the treatment? 
the more you get into this medical pharm world you realise how it is entriely driven by profit and they are profiting off the diseases, big time.


----------



## sir.clausin

I swear to God that if something like that would happen and somehow they would manage to stop a cure. I would blow them up and take them down. I have 110% faith in John and Amy, since I also met with them, but the pain and suffering that we have been going through and still go through got to end.


----------



## 7vNH

happy poo poo said:


> that is very sad about the diabetes…what was the treatment?
> the more you get into this medical pharm world you realise how it is entriely driven by profit and they are profiting off the diseases, big time.


I got a very high-level description of the treatment while my brother in law was still working on it.  It wasn't a typical chemical/pill, I know that much.  Later, after they got bought out, he didn't want to talk about the details...I think he had to sign something.  He did say that it looked awesome in the mouse trials and he was/is very disappointed that the big pharma company seems to have simply buried it.  He also was the most junior member in the company (every other employee was a PhD), so he didn't profit very much from the sale...another reason to be disappointed.

The business model is totally messed up when the goal of a company is the status quo that makes them the most money.  I wish there were an easy answer, but I think the best thing to do now is to keep laser focus on promising ideas and do what we can to keep them from getting buried.


----------



## xeridea

I searched the forum and I think this thread is helpful in providing some background on plans for taking the vaccine forward.

http://www.crohnsforum.com/showthread.php?t=59071&page=3


----------



## Mommabear

This is really depressing! How can these big pharma execs live with themselves?


----------



## xeridea

Here's a write-up on the mice trials of the vaccine from 2007.

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0001229


----------



## wildbill_52280

7vNH said:


> I got a very high-level description of the treatment while my brother in law was still working on it.  It wasn't a typical chemical/pill, I know that much.  Later, after they got bought out, he didn't want to talk about the details...I think he had to sign something.  He did say that it looked awesome in the mouse trials and he was/is very disappointed that the big pharma company seems to have simply buried it.  He also was the most junior member in the company (every other employee was a PhD), so he didn't profit very much from the sale...another reason to be disappointed.
> 
> The business model is totally messed up when the goal of a company is the status quo that makes them the most money.  I wish there were an easy answer, but I think the best thing to do now is to keep laser focus on promising ideas and do what we can to keep them from getting buried.


speaking of being buried, i was watching c-span the other day and the director of the Director of The CDC was talking about antibiotic resistance issues then C. difficile infection, I expected to then hear about fecal transplants, which are an amazing miraculous solution to this deadly GI disease but no mention whatsoever. He did talk about the microbiome and how bacteria are our friends and antibiotics wont solve everything, i thought that was an immediate segway into fecal transplants.  It was his chance to give people hope but perhaps he was protecting people from DIY fecal transplants, that's a possibility. last thing we want is everyone trying this and taking big risks, but just think of what an antibiotic does to us now, its a new risk factor for many chronic diseases, doing a fecal transplant we will soon find there is less risks then antibiotics when the donor is disease free.


----------



## Poppysocks

sir.clausin said:


> I swear to God that if something like that would happen and somehow they would manage to stop a cure. I would blow them up and take them down. I have 110% faith in John and Amy, since I also met with them, but the pain and suffering that we have been going through and still go through got to end.


You and me both.


----------



## Mommabear

I was talking to a GI doctor yesterday and I asked him if he knew about Dr. Herman-Taylor and his vaccine. He did not know anything about it. I then asked if he believed that Crohn's was caused by MAP and he said no, but then added that there is not enough research to support the theory. He does know of Dr. Borody though. 
What is the magic number regarding research supporting a theory? Does anybody here happen to have any idea how many studies there are regarding MAP and Crohn's ? The argument that there is not enough evidence to support the theory seems to be common amount MAP skeptics. It would be nice to be able to counter with a number ... instead of just saying, "oh, but there are a lot of studies ...".


----------



## xeridea

Mommabear said:


> ... I then asked if he believed that Crohn's was caused by MAP and he said no, but then added that there is not enough research to support the theory. ...


My understanding is that they have not been able to detect enough MAP bacterium in biopsy/resected samples to pin the cause on it. I think that's why both Dr. Hermon-Taylor and the RedHill approach is to come up with a diagnostic tool to detect coupled with a medical treatment. 

This article explores the topic some more.


----------



## wildbill_52280

Mommabear said:


> I was talking to a GI doctor yesterday and I asked him if he knew about Dr. Herman-Taylor and his vaccine. He did not know anything about it. I then asked if he believed that Crohn's was caused by MAP and he said no, but then added that there is not enough research to support the theory. He does know of Dr. Borody though.
> What is the magic number regarding research supporting a theory? Does anybody here happen to have any idea how many studies there are regarding MAP and Crohn's ? The argument that there is not enough evidence to support the theory seems to be common amount MAP skeptics. It would be nice to be able to counter with a number ... instead of just saying, "oh, but there are a lot of studies ...".


last time i checked into the map theory of crohn's the studies i read found  higher levels of map in crohn's patients compared to control or uc patients.

 Higher levels also means they found map in UC and healthy controls, which pretty much contradicts the theory of causation. All we can really say it seems is that crohns patients seem to harbor more map, that is all. We also have more ecoli then uc or controls, i wonder why their isnt just as much people pointing fingers at ecoli?? some of this may be inaccurate mind you, this is from memory and not my area of expertise. sorry i didnt provided references either, most of my information is directly from scientific articles tho but my memory occasionally fails me.


----------



## rollinstone

That's not true wildbill, they've actually proved causation by koch's postulates... So it without a doubt is a cause in at least a percentage of people with CD


----------



## wildbill_52280

Joshuaaa said:


> That's not true wildbill, they've actually proved causation by koch's postulates... So it without a doubt is a cause in at least a percentage of people with CD


here is koch's postulate #1
http://en.wikipedia.org/wiki/Koch's_postulates

"The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy organisms."


If it is true that MAP is also found in healthy patients, then MAP does not fulfill the first requirement of causation.
Consider this reference: 



> Interestingly, MAP is at the center of a controversy as to its role (cause of, perpetuate of, innocent bystander) in Crohn’s disease, ulcerative colitis, irritable bowel syndrome, diabetes, sarcoidosis, Blau syndrome, and multiple sclerosis—diseases in which the incidence of systemic MAP is *higher* than that in the general population.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3909502/

Notice they claimed it was higher, and not absent in the general population therefore, doesn't fullfill postulate #1. This may be wrong but If you have better source of information please post it.


----------



## rollinstone

On my phone, so I can't be searching and posting studies, there's another criteria of causation that's been fulfilled, also Wikipedia isn't the most accurate source. But anyway, they took isolated map from a resected piece of a CD patient, they used that same MAP isolate with an animal test subject, I can't remember if it was a goat or cow or what, but anyway, that animal developed johnes/cd after being infected where as it was perfectly healthy before..


----------



## Poppysocks

wildbill_52280 said:


> here is koch's postulate #1
> http://en.wikipedia.org/wiki/Koch's_postulates
> 
> "The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy organisms."
> 
> 
> If it is true that MAP is also found in healthy patients, then MAP does not fulfill the first requirement of causation.
> Consider this reference:


Did you read the next sentence on Wiki?


> However, Koch abandoned the universalist requirement of the first postulate altogether when he discovered asymptomatic carriers of cholera[5] and, later, of typhoid fever. Asymptomatic or subclinical infection carriers are now known to be a common feature of many infectious diseases, especially viruses such as polio, herpes simplex, HIV, and hepatitis C.


----------



## Poppysocks

Do we know of anyone on this forum that is on the current RHB-104 anti-MAP therapy for Crohns patients? Is there a thread? I'm debating between this and ssi


----------



## JMC

Poppysocks said:


> Do we know of anyone on this forum that is on the current RHB-104 anti-MAP therapy for Crohns patients? Is there a thread? I'm debating between this and ssi


Yes, I can put you in touch with someone who is on the RHB-104 trial


----------



## Crohn2357

Here, another discussion:
http://www.healingwell.com/community/default.aspx?f=38&m=3139572


----------



## JMC

Mommabear said:


> I was talking to a GI doctor yesterday and I asked him if he knew about Dr. Herman-Taylor and his vaccine. He did not know anything about it. I then asked if he believed that Crohn's was caused by MAP and he said no, but then added that there is not enough research to support the theory. He does know of Dr. Borody though.
> What is the magic number regarding research supporting a theory? Does anybody here happen to have any idea how many studies there are regarding MAP and Crohn's ? The argument that there is not enough evidence to support the theory seems to be common amount MAP skeptics. It would be nice to be able to counter with a number ... instead of just saying, "oh, but there are a lot of studies ...".


There have been many hundreds of research papers published on the subject of Crohn's/MAP, but I would agree more research is needed because several key tools were missing or the methods applied were faulty - in particular an accurate and reliable test to show whether a patient is infected with MAP is needed.  

Also, what would constitute proof that MAP is the cause?  For most GI doctors "proof" is a medication they can prescribe which kills MAP and makes patients better.  If you are a research scientist, Koch's postulates were proven many years ago confirming MAP as the cause of Crohn's but this has been largely ignored by clinicians.


----------



## JMC

wildbill_52280 said:


> last time i checked into the map theory of crohn's the studies i read found  higher levels of map in crohn's patients compared to control or uc patients.
> 
> Higher levels also means they found map in UC and healthy controls, which pretty much contradicts the theory of causation.


No, it is not that simple.  You can be infected with MAP for years and not develop symptoms as it is a very slow growing, intracellular bacteria and there is clearly a genetic element as to whether you are susceptible to mycobacteria infection (the well known Crohn's NOD2 mutation, for example) and will develop chronic inflammation.  The situation is similar to another disease tuberculosis,  which is caused by Mycobacterium tuberculosis (Koch's postulate _*not*_ met, but no one disputes the cause) where about 90% of people infected will have latent asymptomatic tuberculosis.


----------



## JMC

wildbill_52280 said:


> here is koch's postulate #1
> http://en.wikipedia.org/wiki/Koch's_postulates
> 
> "The microorganism must be found in abundance in all organisms suffering from the disease, but should not be found in healthy organisms."
> 
> 
> If it is true that MAP is also found in healthy patients, then MAP does not fulfill the first requirement of causation.
> Consider this reference:
> 
> 
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3909502/
> 
> Notice they claimed it was higher, and not absent in the general population therefore, doesn't fullfill postulate #1. This may be wrong but If you have better source of information please post it.


For this reason, Koch's postulates were superceded by Relman's criteria as postulate #1 is often not met for many bacteria/viruses


----------



## Mattie

The FAQs page from Professor Hermon Taylor's website may answer some of the questions posed above:

http://crohnsmapvaccine.com/faq/


----------



## wildbill_52280

JMC, what is your opinion on the fact scientists are finding reduced diversity in good bacteria which regulate inflammation and the potential these missing bacteria  could be the cause of inflammation in IBD?

Quote: 





> Conversely, the microbiota of individuals with chronic
> inflammation show lower bacterial diversity and it has
> been determined that Clostridium clusters IV, particularly
> F. prausnitzii, and XIVa are significantly less abundant in
> IBD patients compared to healthy subjects [14,98,101].


Source: http://www.gutpathogens.com/content/pdf/1757-4749-5-23.pdf


Quote: 





> Although the cause of inflammatory bowel disease remains
> unknown, the indigenous intestinal microbiota is considered
> a major if not the main trigger of inflammation, both in
> animal models and in humans.


Source: http://www.biomedcentral.com/1471-230X/13/20

indigenous-originating or occurring naturally in a particular place; native


Also, how do you explain the reports we have regarding Fecal Transplants to have induced long remissions in IBD both crohn's? Is it possible that the restoration of good bacteria that are missing and which regulate inflammation could have initiated a remission or a cure?
http://www.ncbi.nlm.nih.gov/pubmed/24222969?dopt=Abstract
http://www.abc.net.au/news/2014-03-18/sydney-doctor-claims-poo-transplants-curing-diseases/5329836

How do you think these facts relate to what you know about MAP and the cause of crohn's disease? Were you previously aware of these facts i just provided? Do you believe these scientific findings have any relevance to the treatment of IBD? 

I'm interested in learning more details of MAP in regards to crohn's/IBD but tentatively I suspect that map is not of any causative relationship and is just another pathogen among others like AIEC that will be abolished with a fecal transplant when the missing bacteria in IBD patients are restored.


----------



## Mommabear

I tried to get my son on it but he has a fistula so it was a no go. I talked to the doctor anyway and he suggested that my son go on Remicade to help close it, but that is a biologic which also excludes him. Hope you have better luck! By the way, he is directing the study in my area but he actually does not believe in the bacteria theory ...


----------



## Mommabear

Sorry, the reply above was to answer poppysocks.

From what I can gather FMT has not been as successful as many had hoped in treating Crohn's and Dr. Borody in an opinion piece published I believe in May, basically admits that the protocol for FMT needs to be determined. Apparently, it has been successful for some, but not for others. 

Personally, I had great hopes for FMT, and I am not ruling it out any more than I am ruling out any other potential treatment, but perhaps FMT has not worked because the damn MAP rears it's ugly head. Or perhaps a one two punch needs to happen: the RHB-104 treatment and the a fecal transplant to reboot the system. 

In any case, I want to see the vaccine available and SOON! It will put to rest this endless debate. All Crohn's sufferers and those close to them deserve to know!


----------



## xeridea

I ran across this write-up yesterday and it asks the question where's the MAP in Crohn's patients, and suggests that MAP may not necessarily harbor directly in the inflammation/infection sites, but rather in the endothelial cells of the vascular and lympathic systems of the mesentary and this may be why it's hard to observe directly in intestinal tissue samples. 

A while back I also saw a YouTube  presentation by Dr. Marcel Behr at McGill, that IIRC, suggested something about MAP related to the mesentary.


----------



## JMC

wildbill_52280 said:


> JMC, what is your opinion on the fact scientists are finding reduced diversity in good bacteria which regulate inflammation and the potential these missing bacteria  could be the cause of inflammation in IBD?


Wildbill,
I am not sure my opinion is of any great value, I am just a Crohn's patient,with a scientific background (PhD in Physics) who has read several hundred scientific papers on a subject that caught my interest - the relationship between MAP and Crohn's.   From what I have read, MAP is a _very _credible candidate for being the cause of Crohn's, but I also accept that more research and better tools (tests and treatments) are needed to finally close the case.

For what it is worth, my opinion would be: what is causing the reduction in diversity of the good bacteria in IBD patients?  Without a clear model explaining how and why that happens, the observation is of limited value.



wildbill_52280 said:


> Also, how do you explain the reports we have regarding Fecal Transplants to have induced long remissions in IBD both crohn's?


I am aware of fecal transplants and the work of Prof Thomas Borody.  Have you watched this?  My understanding is that it is an effective treatment for ulcerative colitis, rather than Crohn's.




wildbill_52280 said:


> Is it possible that the restoration of good bacteria that are missing and which regulate inflammation could have initiated a remission or a cure?


I can believe you may be able to achieve remission, just as I believe it may be possible through eating a very restrictive diet.  I doubt however, it is a cure unless you can explain how your microbiota got into a bad state in the first place and can prevent that from happening again.



wildbill_52280 said:


> How do you think these facts relate to what you know about MAP and the cause of crohn's disease?


Currently, I believe Crohn's is caused by an immune deficiency which makes us susceptible to mycobacterial infections (specifically Mycobacterium avium sub-species Paratuberculosis).  Once a MAP infection becomes established you will suffer immune dysregulation in the gut, chronic inflammation and changes in the microbiota.  I like this infographic.


So the important steps:
1) Immune deficiency
2) MAP infection
3) Microbiota changes

I think you need to address the problem at the earliest point in the chain, how is a fecal transplant going to achieve that?



wildbill_52280 said:


> Were you previously aware of these facts i just provided?


Mostly, yes.



wildbill_52280 said:


> Do you believe these scientific findings have any relevance to the treatment of IBD?


Yes, especially if they provide a safer way of achieving remission than the current crop of biologic therapies.



wildbill_52280 said:


> I'm interested in learning more details of MAP in regards to crohn's/IBD but tentatively I suspect that map is not of any causative relationship and is just another pathogen among others like AIEC that will be abolished with a fecal transplant when the missing bacteria in IBD patients are restored.


I believe we have a immune deficiency and replacing the missing good bacteria will only be a temporary fix unless you address the underlying cause.


----------



## JMC

And then papers like this come along and you realise we may all be attacking the same problem (MAP infection) from different angles.


"This report presents a rationale for how/why *Dietzia subsp. C79793-74* should be clinically evaluated for efficacy in *patients with IBD*. Arguments are based on previous studies that demonstrated (a) clinical similarities of Johne’s disease and Crohn’s disease, (b) *inhibition of growth of MAP by Dietzia* under specific culture conditions, (c) safe 
usage for extended daily treatments of adult cattle (up to 24 months), and (d) when used as a *probiotic*, curtailed 
diarrhea and cured 40% of adult cattle with early stage *paratuberculosis*."


----------



## rollinstone

JMC could you please put me in touch with the person on the rhb trial if possible?


----------



## Nicola Price

Google crohnsmapvaccine and their Facebook page.  The vaccine is ready for human trial. It is only the funding that is now needed. As governments are not interested, it is up to the Crohn's community. Please take a look and donate what you can. If every Crohn's sufferer in the world gave just £1 we would have more than enough for the therapeutic vaccine and diagnostic test. Only then will this disease be consigned to history where it belongs. Crohn's is spreading fast and we can stop it. This is now URGENT. Get giving!


----------



## 7vNH

I really appreciate the above MAP/CD causation discussion, and am thankful for this site and the people who's thoughtful contributions make it so valuable.

The recent discussion reminds me of a similar problem...one that was "solved".  The word is in quotes because even to this day, although there is agreement that a pathogen is require (but not sufficient), the "solution", thought to be benign, actually may not be.

"The only good H.Pylori is a dead H.Pylori" became (and still is, generally) the rallying cry of the practitioners.  I am talking about H.Pylori/stomach ulcer situation.  Many of us carry H.Pylori asymptomatically.  There is considerable evidence that H.Pylori is protective in younger people!  It serves to strengthen the immune system.  And there is evidence (no one here needs to be reminded) that antibiotics used to eradicate H.Pylori might not be as benign as once thought.  A good read on the whole microbiome diversity for health can be found in a book called "Missing Microbes".

The point I wanted to make was that the progression of the medical community towards consolidation on the stomach ulcer issue might be similar to the progression on the CD issue.  If you explore the detailed history of campylobacter-like organisms and work your way to the current thinking, it might be an interesting exploration.  Who was arguing for the change in thinking?  Who was the hero, and what extrordinary action was taken to change thinking?


----------



## wildbill_52280

7vNH said:


> I really appreciate the above MAP/CD causation discussion, and am thankful for this site and the people who's thoughtful contributions make it so valuable.
> 
> The recent discussion reminds me of a similar problem...one that was "solved".  The word is in quotes because even to this day, although there is agreement that a pathogen is require (but not sufficient), the "solution", thought to be benign, actually may not be.
> 
> "The only good H.Pylori is a dead H.Pylori" became (and still is, generally) the rallying cry of the practitioners.  I am talking about H.Pylori/stomach ulcer situation.  Many of us carry H.Pylori asymptomatically.  There is considerable evidence that H.Pylori is protective in younger people!  It serves to strengthen the immune system.  And there is evidence (no one here needs to be reminded) that antibiotics used to eradicate H.Pylori might not be as benign as once thought.  A good read on the whole microbiome diversity for health can be found in a book called "Missing Microbes".
> 
> The point I wanted to make was that the progression of the medical community towards consolidation on the stomach ulcer issue might be similar to the progression on the CD issue.  If you explore the detailed history of campylobacter-like organisms and work your way to the current thinking, it might be an interesting exploration.  Who was arguing for the change in thinking?  Who was the hero, and what extrordinary action was taken to change thinking?




yes this book "missing bacteria" is pretty much the book i would have wanted to write if i was actually working the field, these new scientific observations will be re-writing our previous theory of germs which has been what our scientific medical system is based upon. say good bye to the old germ theory model of disease. we will be consuming good germs rather then using antibiotics in the future. c difficile infections seem to be a similar situation to h pylori, they only become virulent when other species become extinct and allow c. difficile to grow unchecked. this is why many case of C. difficile do not respond to antibiotics, and only respond to a fecal transplant which seem to be 100% curative. c difficile infections symptoms are nearly identical to IBD symptoms, except you are more likely to die from c difficile. antibiotics are identified as the #1 risk factor to developing c diff.

there are reports of UC diagnosis changing to cd overtime, I believe all these gi diseases with eventually be defined by a combination of what good bacteria are missing and which pathogens have overgrown to dominate, with some genetics playing a smaller role.


----------



## Mommabear

Looking at the potential cost of 1 year on humira or Remicade runs anywhere from $14,0000 to $33,000, I TOTALLY fail to understand why there has not been a stampede of folks donating to the vaccine. Forget for the moment the misery this disease brings, why are our governments not supporting this vaccine? It is insane! It obviously does not take a mathematical genius to look at the costs of these drugs, the hospital stays, emergency room visits, surgeries, etc., multiply by the numbers of cases worldwide and that are increasing exponentially in some countries, to realize that the $400,000 or so needed for the test is chump change! Our governments and private insurance plans subsidize medication that does not necessarily always work for everyone, and that is ok because they work for some. Yet, there is no support for the most viable option for a true cure, supported by excellent science, numerous studies .... I am dumbfounded!


----------



## Mattie

Couldn't agree more Mommabear. I find it rather depressing that Professor Hermon Taylor's work isn't being supported better than it is. If for no other reason, we need to have the question about MAP and Crohns answered once and for all and his work is the best chance we are going to get to do this. Why aren't more people donating? The MAP theory has met Koch's  postulates, what else do we need to know?


----------



## JMC

7vNH said:


> The point I wanted to make was that the progression of the medical community towards consolidation on the stomach ulcer issue might be similar to the progression on the CD issue.  If you explore the detailed history of campylobacter-like organisms and work your way to the current thinking, it might be an interesting exploration.  *Who was arguing for the change in thinking?  Who was the hero, and what extrordinary action was taken to change thinking?*


Can you save me the time of searching for this an tell me the answer?


----------



## 7vNH

JMC said:


> Can you save me the time of searching for this an tell me the answer?


http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery


----------



## JMC

7vNH said:


> http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery


Sorry, I thought you talking about how H. pylori and gastric ulcers had moved beyond simple anti-biotic treatments as the thinking was now in terms of "missing" bacteria, rather than killing specific targets.


----------



## wildbill_52280

7vNH said:


> http://discovermagazine.com/2010/mar/07-dr-drank-broth-gave-ulcer-solved-medical-mystery


Clinical onset of the Crohn's disease after eradication therapy of Helicobacter pylori infection with antibiotics. Could the antibiotics have caused IBD?
http://www.ncbi.nlm.nih.gov/pubmed/11208510


My interpretation of this case is that the amoxicillin antibiotic eliminated beneficial microbes which regulate inflammation in gi tract, setting up for IBD later. This was what likely happened to me only i took amoxicillin-clavulanic acid(brand Augmentin) for respiratory infection months before developing crohns.

This is the best evidence yet in humans showing bifidobacteria and commensal clostridia sensitive to amoxicillin-clavulanic acid in a human being.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC356823/

additional evidence shows this antibiocs ability to kill these bacteria is not a coincidence or study fluke.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC375311/
http://www.ncbi.nlm.nih.gov/pubmed/20601031
http://www.ncbi.nlm.nih.gov/pubmed/20002181
http://www.ncbi.nlm.nih.gov/pubmed/20889009
http://aac.asm.org/content/48/4/1365.full


Clostridia are the most potent regulators of inflammation and butyrate producers. These bacteria are now shown to be fewer in crohn's compared to healthy people.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3565871/




These are the are only some of the scientific reasons i believe low diversity in beneficial intestinal microbes are the first cause of inflammation and any pathogens you acquire afterwards only initiates different kinds of inflammation adding to the total inflammatory load. low diversity may precede all other events. That's one of the many reasons why I stand firm behind fecal transplants as a treatment and cure, although I am aware of all other evidence and theories for IBD. 
http://www.nature.com/nm/journal/v18/n5/full/nm.2767.html


Here is a paper that discusses the correlation of the rise of chronic Diseases being linked to reduction in biodiversity around the world, don't forget that we have been pumping livestock with antibiotics as well as ourselves and all this goes in the water supply. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3207110/#!po=2.94118


Here is a paper that discusses the correlation between the Eradication of Infectious diseases(through antibiotics perhaps) with the steady rise of chronic diseases suggesting the former could be the cause of the latter.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2841829/

See my signature below for more info.


----------



## Mattie

And that's what likely happened to me too! I was diagnosed with H Pylori and took three very strong antibiotics which made me feel dreadful. Months later, Crohns symptoms started,


----------



## Mommabear

I think this was already posted, but nevertheless here it is: http://www.researchgate.net/profile...ucosal_Tissues/links/0a85e5358158944ea2000000

This makes a lot of sense, i.e. Crohn's as a syndrome rather than 1 disease, and explains why the lucky few manage to beat it through different treatments. Developing an accurate test for MAP will greatly enhance choice of effective treatments.


----------



## Malgrave

http://www.newscientist.com/article...012-GLOBAL-facebookgoogletwitter#.U-aMRn8aySM


----------



## Mattie

Ha! I can remember the consultant who performed my endoscopy and diagnosed H Pylori telling me that he, too, had been diagnosed with the bug but had decided not to treat it as it had been proven to have some benefits in the body. I wish I had listened to him and not my GP who thought it best to treat it with antibiotics.


----------



## xeridea

Mommabear said:


> I think this was already posted, but nevertheless here it is: http://www.researchgate.net/profile...ucosal_Tissues/links/0a85e5358158944ea2000000
> 
> This makes a lot of sense, i.e. Crohn's as a syndrome rather than 1 disease, and explains why the lucky few manage to beat it through different treatments. Developing an accurate test for MAP will greatly enhance choice of effective treatments.


It's refreshing that there is research like this that tries to dispel the notion that Crohn's is an auto-immune disease. Quoting the article "The notion that Crohn’s disease is an autoimmune disease has long been dismissed." I wish GIs would stop calling it an autoimmune disease too.

This article is interesting in that it splits the disease to two biotypes, one that seems to point the finger as MAP and related bacterium as a cause, the other to adherant invasive species as a cause.

I hope this is the case, and a combination MAP/SSI vaccine can throw this disease's ass out to the alley.


----------



## rollinstone

I think it will, theres gotta be a reason why some people have gone into 100% sustained remission from SSI vaccine, and some have gone into 100% sustained remission from anti-map therapy, and some others have benefited but not quite gotten to remission, I'd be extremely interested in giving the later group both and seeing what potential benefit that may have.


----------



## 7vNH

xeridea said:


> This article is interesting in that it splits the disease to two biotypes, one that seems to point the finger as MAP and related bacterium as a cause, the other to adherant invasive species as a cause.





> Our
> results suggest that Crohn’s disease patients may be divided
> into distinct populations or biotypes: a population con-
> taining plasmid-mediated adherence/invasion genes and the
> other Mycobacterium-associated IS900 and 251F sequences.
> These biotypes were found to be mutually exclusive: inva-
> sion/adherence genes were not found in patients in which
> IS900/251F was detected and vice versa.


This might explain why it's been so hard to find "a solution" to Crohn's....if the Crohn's population is split in half between the two biotypes, no treatment can fix better than 50% of the population.


----------



## Karma

Is it possible to make vaccines against common ecoli strains?  I'm sure I read about one somewhere.

Surely all this means that crohns patients need to practice very, very good hygiene?  Could a mild food poisoning episode put us into flare?  I read somewhere that we can clear small amounts of bacteria, but there's a limit beyond which things cascade.  Lots of vit d prob helps too


----------



## wildbill_52280

Joshuaaa said:


> I think it will, theres gotta be a reason why some people have gone into 100% sustained remission from SSI vaccine, and some have gone into 100% sustained remission from anti-map therapy, and some others have benefited but not quite gotten to remission, I'd be extremely interested in giving the later group both and seeing what potential benefit that may have.


100% remission from ssi vaccine? when did this happen? do you have a link?


----------



## sir.clausin

Look up Trevor Wilson, I´ve spoken to him at several occasions. He is and still is in 100% full remission 3y after going off the SSI-treatment. He say that his values are like a normal person.


----------



## sir.clausin

However, I know that I have a full blown very nasty MAP-infection (confirmed by the professor, but I am on the SSI-vaccine hoping that it will finally give my body some rest from it´s constant fighting in a inflamed body. I will go on the anti MAP when I´m done with the SSI, IF I am in remission.

This disease sucks big time!


----------



## Mommabear

SrClauson, How are you feeling so far? Anything good yet? My fingers and toes are crossed!


----------



## Mommabear

I am confused. Is this significant? http://www.google.com/patents/US8465753


----------



## JMC

Mommabear said:


> I am confused. Is this significant? http://www.google.com/patents/US8465753


It is a different type of vaccine (attenuated or killed MAP) to the one that has been developed by Prof John Hermon-Taylor which is a modern T-cell vaccine.  I would be interested to know whether this vaccine is being used or considered for human trials.


----------



## rollinstone

I'd really like to see scientists try correcting these gene mutations to see if that can stop it


----------



## wildbill_52280

sir.clausin said:


> Look up Trevor Wilson, I´ve spoken to him at several occasions. He is and still is in 100% full remission 3y after going off the SSI-treatment. He say that his values are like a normal person.


seems there is a trevor:
http://www.crohnsforum.com/showthread.php?t=58980


and a tyler wilson:
https://www.youtube.com/watch?v=TEFrrAxAP6I

maybe you mixed these names up perhaps.

Im not sure how trust worthy these reports and sources are, but i will be scrutinizing these reports over the next week to determine the quality of evidence that exists for the vaccine and the map theory of crohn's. i did look at the link to dr. herman taylors site and there was helpful infomation on their but if anyone would like to provide links to me in private as far as any good evidence exists that would be great.


----------



## rollinstone

Yeah he meant Tyler Wilson, there's also another 3 ladies that went into 100% histological remission from the SSI that we're dx w crohns, Tyler is the longest standing one but I believe the others have also sustained remission. 

Seb, I think your spot on with the anti-map combo alongside the SSI vaccine, have you been chatting to Prof. Borody?


----------



## sid

Is there any site where one can make donations for Prof. H.Taylor's work ??

If not we must take initiative to somehow make a collection...a place where Crohns' sufferers and their family members can make the donation. Waiting for the Govt. seems a bad idea.


----------



## JMC

sid said:


> Is there any site where one can make donations for Prof. H.Taylor's work ??
> .


The simplest option is to use the JustGiving site.  For other options have a look at the Crohn's MAP Vaccine website.


----------



## Malgrave

Please do donate and ask your loved ones to donate too!
We have also several fundraisers who try to raise funds for this, just google facebook Crohn's MAP vaccine Heroes.


----------



## xmdmom

I just saw this on the MAP facebook page from yesterday.

"IRS tax id number created. Check. Tax exempt bank account opened. "

So it sounds like there is/will be a way to make a tax deductible donation. That doesn't matter to me but I know it's an incentive for some folks who donate.


----------



## rollinstone

Is there a PayPal option to donate?


----------



## JMC

Joshuaaa said:


> Is there a PayPal option to donate?


Not at the moment, but it is something that is being worked on with King's College London.


----------



## rollinstone

Cool, hopefully that gets up soon, I think itl entice more ppl to donate, also wondering if they've updated the amount needed to real time so we can see the progress.


----------



## Poppysocks

http://www.dailymail.co.uk/health/article-15442/Could-vaccine-help-Crohns-disease.html

Daily mail article posted today


----------



## rollinstone

I truly hope it's sooner than five years


----------



## JMC

Poppysocks said:


> http://www.dailymail.co.uk/health/article-15442/Could-vaccine-help-Crohns-disease.html
> 
> Daily mail article posted today


Unfortunately, I think it is an old article published a number of years ago. The sad truth is years are passing by and this potential cure is waiting untested due to lack of funding. People spend thousands every year on gadgets and luxury goods, what is your health worth to you?  Think about that the next time you make a big purchase.


----------



## xeridea

JMC said:


> The sad truth is years are passing by and this potential cure is waiting untested due to lack of funding.


JMC do you know how much has been raised towards the 80K November target for the test portion? The vaccine web site doesn't show that clearly. 

For the trial itself it says they are raising that through investment and not charitable contributions. Do you know what investor shares cost?


----------



## JMC

xeridea said:


> JMC do you know how much has been raised towards the 80K November target for the test portion? The vaccine web site doesn't show that clearly.


There are regular updates on the Facebook page, it was £26,900 on 2nd August and there are a few larger donations coming in the next few weeks.



xeridea said:


> For the trial itself it says they are raising that through investment and not charitable contributions. Do you know what investor shares cost?


I believe minimum investment is about £50,000 (US$84,000 approximately)


----------



## Mommabear

JMC, do you happen to know when Hermon-Taylor's next article will come out?


----------



## JMC

Mommabear said:


> JMC, do you happen to know when Hermon-Taylor's next article will come out?


I asked him that by email today, no reply yet.  I am meeting him on Friday evening, so drop me an email if you have any other questions you want me to ask.


----------



## JMC

Have a look at the King's College London Just Giving Page.  It covers fund raising for more than just the Crohn's MAP Vaccine (MEN3936), but as you can see, the Crohn's MAP Vaccine is by far the best supported project with lots of active fund raisers and several people have already raised substantial amounts.   This is what we want to see, people in the Crohn's community taking positive action!!


----------



## Malgrave

I am one of those fundraisers (Thanks JMC!). It is so easy to set up a JustGiving page and raise funds for this! All you need is a "good" story, maybe some photos. Then just ask your loved ones, relatives, friends, collegues and other contacts to donate! If you are interested, please contact Crohn's MAP vaccine Heroes via their facebook site or send a pm to me ;-)


----------



## rollinstone

Paper from 2012, but a real good read for those who are interested.. It's 9 pages long but I found it to hit the nail on the head in regards to crohns as an umbrella term... It's called the many faces crohns, and the authors give an in depth discussion about MAP, intestinal TB, AIEC... I think every crohns patient should read it... Not just patients but relatives etc to give them a better understanding of "CD" and the complexities around it.

http://www.scirp.org/journal/PaperDownload.aspx?paperID=19619


----------



## JMC

Joshuaa, it is an excellent, well balanced review, thanks for sharing


----------



## rollinstone

My pleasure, very interesting and promising when you think about the success people have had with the SSI vaccine, I think with 4 years remission, it's entirely possible that Tyler was cured of an AIEC infection which presented as "Crohn's". Now if we could just get this vaccine for MAP happening!


----------



## VilliVagabond

Joshuaa - I agree that "Crohn's" has become a "catch all" term in reference to those presenting with symptoms. As research continues to progress, I believe the medical profession will learn that the "disease" is in fact a subset of different problems caused by an individual set of triggers. 

For me, for example, the SCD diet has worked wonders. I have at most 1 - 2 bowel movements a day, no swelling, my CRP and SED rate are totally normal (as confirmed by bloodwork and a CT enterography). However, this may not work for someone who has a different "trigger." 

We're making progress. Let's pray for a cure in our lifetime (hopefully soon). In the meantime, we can help to fundraise for this vaccine in the hopes that a subset of those with "Crohn's" that is caused by MAP will be cured. The SSI vaccine by Qu is another great treatment. Hopefully in 10 years, we will have a variety of treatments in our arsenal that make this terrible disease an afterthought.


----------



## rollinstone

I'm tryna go back on scd also as a fail safe, though it's hard when you feel nauseous  I really hope this thing doesn't take 10 years. Don't know if I can last that long. 

JMC when you talk to Prof JHT again or his team can you please chase them up about setting up a PayPal link as an option to donate?


----------



## JMC

Joshuaaa said:


> JMC when you talk to Prof JHT again or his team can you please chase them up about setting up a PayPal link as an option to donate?


It is in the to do list, it needs input from KCL admin as at the moment any giving via PayPal would not be differentiated from donations to other projects


----------



## Mommabear

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3581090/

http://www.gutpathogens.com/content/5/1/18


----------



## greypup

Why not a spin off on the ice bucket challenge to raise funds???

http://www.today.com/video/today/55875437#55875437


----------



## Mommabear

Absolutely! Also, how about bumper stickers to raise awareness/donations?


----------



## greypup

ALS has raised over 5.5 million dollars w/the ice bucket challenge.

I wouldn't want to steal the same idea but we can come up with one of our own to go viral???


----------



## JMC

There are a few interesting MAP papers on the Gut Pathogens all time most viewed list:
http://www.gutpathogens.com/mostviewed/alltime


----------



## JMC

I spoke to Prof John Hermon-Taylor on the phone today and there are several exciting updates to announce soon - keep an eye on Facebook and the Crohn's MAP Vaccine website in the next few weeks.  The bottom line is, things are falling into place for the human trials to start in *November 2015*, which would be amazing!


----------



## rollinstone

Sooooo good! I had a dream
About it last night!


----------



## Mattie

That is such good news.


----------



## Mattie

JMC

Just to clarify please. Are the human trials you mention for the MAP test or the MAP vaccine?


----------



## Poppysocks

JMC said:


> I spoke to Prof John Hermon-Taylor on the phone today and there are several exciting updates to announce soon - keep an eye on Facebook and the Crohn's MAP Vaccine website in the next few weeks.  The bottom line is, things are falling into place for the human trials to start in *November 2015*, which would be amazing!


WOW thats excellent!!


----------



## Mommabear

Very, VERY GOOD NEWS!


----------



## JMC

Mattie said:


> Just to clarify please. Are the human trials you mention for the MAP test or the MAP vaccine?


The vaccine trial.  There are also some updates on the MAP test development.


----------



## HelenMelb

That's fantastic news! God bless this truly amazing doctor.


----------



## Mattie

Oh my goodness! Thank God for Prof H-T and all others looking for a cure for this dreadful disease.


----------



## Mommabear

Wow! I am thrilled!


----------



## SarahD

That really is amazing news! Any word on eligibility criteria and how many people they will be looking to recruit?


----------



## sid

all the best to Prof H. Taylor. my heart says we'll see the good days very soon.


----------



## xeridea

I ran across some studies from the early 1980's which proposed using the then 90 year old  BCG vaccine, theretofore used for treating tuberculosis, as an immune stimulating approach for treating Crohn's. Say http://gut.bmj.com/content/20/3/229.full.pdf for example. Apparently it was also considered for treating Type I diabetes, but pretty much died on the vine because it could not garner patent protection and thus not worthwhile the investment for clinical trials. 

It's just another piece of data which supports the thinking that CD is perhaps an immunodefficiency that can be reset through a proper vaccine.


----------



## Poppysocks

Can MAP be detected in fecal samples in humans? Like CDiff?


----------



## rollinstone

Poppysocks said:


> Can MAP be detected in fecal samples in humans? Like CDiff?


Tricky question, as far as I know it's really really hard to test for it... Current available methods are done via pcr. Culture staining I think, prof Herman Taylor is working on a more accurate test ATM, they're trying to raise funds for it


----------



## Poppysocks

Any updates? I haven't seen anything about the vaccine trial next year.


----------



## JMC

Poppysocks said:


> Any updates? I haven't seen anything about the vaccine trial next year.


The announcement will be made once the contracts have been signed, I believe JHT is on holiday until next week, so we might have to wait a bit longer.


----------



## JMC

There was an update on the fund raising effort to complete the laboratory work on the MAP diagnostic test and the total is now £39,160, passing the midway point to the £70,000 target.  This includes a donation I made, which with the matched giving from my employer was (I believe) the largest so far.


----------



## Mommabear

JMC, thank you!!!


----------



## Helenv

Hi everyone, I have just started my own just giving page and joined the Crohns Map Heroes to fundraise for the MAP test. It was really easy to set up and once you start to tell your friends and acquaintances about the fundraising it really snowballs! Me and a group of friends are doing a sponsored walk/cycle ride and have all got sponsored for it and we are planning some more events as well. It is really amazing the support that you get, all you need to do is set up a just giving page, connect to the Crohns MAP heroes and start to spread the word.


----------



## Malgrave

Helenv said:


> It is really amazing the support that you get, all you need to do is set up a just giving page, connect to the Crohns MAP heroes and start to spread the word.


I agree, I have raised almost £7,000 in three months for the vaccine, donations mainly coming from friends, colleagues, relatives and totally strangers. All you need is to try!


----------



## SMSIRL

electrichead said:


> To the people who think large drugs companies are going to try to ban this vaccine - you can't think that way about all of these cures/vaccines that exist. Drug companies will profit from such vaccines by manufacturing/distributing them. Think about it - there are loads of vaccines available for a variety of diseases that could otherwise be 'treated' temporarily.


Actually, I have friends working in the vaccines area and they find it very hard to get funding. Indeed, large pharma don't "ban" vaccines, but they don't go out of their way looking for them. As to the ethics of Pharma, one need only recall the use licences granted for azt when AIDS started up. I could name many a case where pharma was happy to do questionable things to make profits. But that would be off point.

As to a MAP vacc - I'd be happy to give it a bash


----------



## AJC - Australia

it is fair to think that a drug company would try and suppress the crohns map vaccine if it can cure the disease. Simply because with infliximab/humira they are making BILLIONS every year, whereas with the vaccine they would only make money for one dose and then never make any money from crohns ever again.

If you had a product that made you billion of dollars every year and a new product came out that was going to make you obsolete, what would you do? 

Buy the rights to the new product?

Keep the sceptical goggles on people.


----------



## Mattie

Hi Everyone
I have been following the progress of the MAP test and vaccine with interest and believe we could be on the brink of something special. However, I am trying to get my head around the timescale for all this. The Crohn's MAP Vaccine site says that they need to raise £70k by November this year and a further £300k to trial the MAP test in the clinic, all of which they are hoping to raise from charitable donations. So far they have raised £39,000 or so, just over half of the £70k November target, which is a tremendous effort. Does anyone know what the timescale is to raise the remaining £300k?
They also need to get the vaccine manufactured and into clinical trials which will cost a further £2.65m. The intellectual property for the vaccine is owned by HAV Vaccines Ltd and this company will be seeking investments for this amount for the manufacture and trial of the vaccine.
Does anyone know if this is happening concurrently and, if so, if any/what progress has been made? Does anyone know when the MAP test might be available to the public? Does anyone know how long the vaccine will take to manufacture and trial and then be available to the public? I have looked on the Crohn's MAP vaccine site but am getting a tad confused. There seem to be people on here who have information about all this and so might have answers to some of the questions. Many thanks.


----------



## baistuff

As someone who has had a fecal transplant and done well with it, there certainly is use for them in some patients as a treatment modality. But a cure? I have a bridge over the East river to sell you.

Best case scenario with FMT besides the resolution of dysbiosis, control of bad bugs, replacement of good bugs, would be a reset of the immune system. IOW, the new fecal matter causes a cessation or rebooting of the immune system response in the GI system. That has not and will be difficult to prove. However, even if that does occur intuition screams it would only be temporary.  FMT cannot correct the host defect all us IBDers have.  So please don't use terms like cure. It implies a problem completely gone never to return, and so far it is not the case save for a very small percentage of recipients. 

So, though I am very happy FMT patient, let's keep the hyperbole to a minimum. 

As for MAP, their may be something to the theory and it certainly needs thorough research, but JHT has been in neutral for over 2 decades, always asking for money, always "a year away" from something. But ask yourselves what tangible accomplishment has he obtained to move the pendulum in any meaningful direction in the past 10 years? 15 years?


----------



## Jennifer

Thank you for your input baistuff.  

Previous posts have been deleted. Let's keep this thread on topic about the MAP vaccine. Thank you everyone for your cooperation.


----------



## Poppysocks

baistuff said:


> As someone who has had a fecal transplant and done well with it, there certainly is use for them in some patients as a treatment modality. But a cure? I have a bridge over the East river to sell you.
> 
> Best case scenario with FMT besides the resolution of dysbiosis, control of bad bugs, replacement of good bugs, would be a reset of the immune system. IOW, the new fecal matter causes a cessation or rebooting of the immune system response in the GI system. That has not and will be difficult to prove. However, even if that does occur intuition screams it would only be temporary.  FMT cannot correct the host defect all us IBDers have.  So please don't use terms like cure. It implies a problem completely gone never to return, and so far it is not the case save for a very small percentage of recipients.
> 
> So, though I am very happy FMT patient, let's keep the hyperbole to a minimum.
> 
> As for MAP, their may be something to the theory and it certainly needs thorough research, but JHT has been in neutral for over 2 decades, always asking for money, always "a year away" from something. But ask yourselves what tangible accomplishment has he obtained to move the pendulum in any meaningful direction in the past 10 years? 15 years?


I think this has been covered already extensively by JMC. Not sure what the point is of bringing it up again.


----------



## baistuff

Poppysocks said:


> I think this has been covered already extensively by JMC. Not sure what the point is of bringing it up again.


Subsequent posts are still talking or encouraging folks to donate.  Just trying to get
People to think twice before parting with their money. Many of us spend a ton on meds, supplements, doctors, missed work. It should not fall on the desperate patients to part with money for this work. Just trying to protect some vulnerable folks, that's all. But your message is clear, ill shut up about it.


----------



## rollinstone

baistuff said:


> Subsequent posts are still talking or encouraging folks to donate.  Just trying to get
> People to think twice before parting with their money. Many of us spend a ton on meds, supplements, doctors, missed work. It should not fall on the desperate patients to part with money for this work. Just trying to protect some vulnerable folks, that's all. But your message is clear, ill shut up about it.


Plz do, if this vaccine ends up being a cure then you're going to be the person that was trying to convince those who donated to slow down the process. Conversely if it doesn't work then you can rightfully say it's not like you didn't warn us, but either way at least we will know, until then please stop trying to slow down its progress, many of us may be desperate but you have nothing if you don't have hope.

Likewise, this thread is for the purpose of donating and continuing progress for the vaccine and it's test, so you're really out of place hopping on it trying to slow it down. I think anyone who is smart enough to connect the dots and done their research will be smart enough to make their own decision if they want to donate or not, but your continuous bashing of JHT is not on.


----------



## Mattie

Mattie said:


> Hi Everyone
> I have been following the progress of the MAP test and vaccine with interest and believe we could be on the brink of something special. However, I am trying to get my head around the timescale for all this. The Crohn's MAP Vaccine site says that they need to raise £70k by November this year and a further £300k to trial the MAP test in the clinic, all of which they are hoping to raise from charitable donations. So far they have raised £39,000 or so, just over half of the £70k November target, which is a tremendous effort. Does anyone know what the timescale is to raise the remaining £300k?
> They also need to get the vaccine manufactured and into clinical trials which will cost a further £2.65m. The intellectual property for the vaccine is owned by HAV Vaccines Ltd and this company will be seeking investments for this amount for the manufacture and trial of the vaccine.
> Does anyone know if this is happening concurrently and, if so, if any/what progress has been made? Does anyone know when the MAP test might be available to the public? Does anyone know how long the vaccine will take to manufacture and trial and then be available to the public? I have looked on the Crohn's MAP vaccine site but am getting a tad confused. There seem to be people on here who have information about all this and so might have answers to some of the questions. Many thanks.


Just bumping this to see if anyone has any answers to the original questions?


----------



## AJC - Australia

I have asked them and I am assured that these questions are going to be answered by the crohnsmapvaccine over the coming days.

Please understand, everyone is very busy working towards the cure.


----------



## JMC

I will try to answer these as accurately as possible, but also remember there is a long list of questions that has been sent to Prof Hermon-Taylor and better answers will be put in a newsletter and on the website later.



Mattie said:


> The Crohn's MAP Vaccine site says that they need to raise £70k by November this year and a further £300k to trial the MAP test in the clinic, all of which they are hoping to raise from charitable donations. So far they have raised £39,000 or so, just over half of the £70k November target, which is a tremendous effort. Does anyone know what the timescale is to raise the remaining £300k?


The £70k target is to fund the MAP Test research in 2015.  It is enough money to cover the salary of a research scientist (who does flow cytometry, etc.) and the materials and other equipment needed.  If the £70k target is hit, the research will proceed as expected and hopefully be completed before the end of 2015.  Without this money, the lab technician who does a lot of the work will be unemployed when the money runs out.

I expect the £300k target needs to be met by the end of 2015.  The current plan is to apply for a grant from NIH.  More details on this when available.



Mattie said:


> They also need to get the vaccine manufactured and into clinical trials which will cost a further £2.65m. The intellectual property for the vaccine is owned by HAV Vaccines Ltd and this company will be seeking investments for this amount for the manufacture and trial of the vaccine.
> Does anyone know if this is happening concurrently and, if so, if any/what progress has been made? Does anyone know when the MAP test might be available to the public? Does anyone know how long the vaccine will take to manufacture and trial and then be available to the public? I have looked on the Crohn's MAP vaccine site but am getting a tad confused. There seem to be people on here who have information about all this and so might have answers to some of the questions. Many thanks.


Yes, it is happening concurrently.  Yes there are investors who have expressed an interest and I believe the sums which have been committed are sufficient to cover the initial vaccine manufacturing costs.  Again however, I need Prof Hermon-Taylor to officially confirm that.  We have been waiting on an answer for a few weeks, but hopefully this will happen soon.


----------



## Mattie

Thanks JMC for such a detailed reply. Much appreciated and very useful.


----------



## Poppysocks

Can anyone link me to an article that proves pasteurization does not kill all of the MAP bacteria?

This article claims it does.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC106461/

Of course I have also come across articles confirming MAP is not killed off by pasteurization.


----------



## xmdmom

http://www.aeii.org/DrTaylor/Tragedy/MilkUKGrant.pdf
"It was concluded that viable M. paratuberculosis is occasionally present at low levels in commercially pasteurized cows’ milk in the United Kingdom."

http://www.aeii.org/DrTaylor/Tragedy/MilkMarshfieldUSA.pdf
"The combined data from the two laboratories revealed the presence of viable MAP in 2.8% of the retail whole milk pints tested."

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2672.2009.04286.x/full
"The presence of MAP in raw and pasteurized milk has been the subject of several studies which show that pasteurized milk is not always MAP-free and that the effectiveness of pasteurization in inactivating MAP depends on the initial concentration of the agent in raw milk. "


----------



## Poppysocks

http://www.ncbi.nlm.nih.gov/pubmed/15895728

http://www.ncbi.nlm.nih.gov/pubmed/11976118

Thank you xmdmom. First two links weren't working.


----------



## Malgrave

Not sure if this has been posted already...

http://vri.cz/docs/vetmed/57-12-623.pdf


----------



## VilliVagabond

Any update on the process? Looked online for a status update, doesn't seem to be anything developing as of now...


----------



## Kellix

Heres the link to the website and it tells all the info people are asking about milk pasteurization not killing MAP. A lot of people have had genetics, I have crohns and both sides of my family never had it before and had to get 2 resections for it. I pray it works and gets out, yes the drug companies would be against it because Humira and remicade would die, sick people keep paying healthy people do not. But think of this. The HEP C cure came out and I had a friend that had it, it cost 1000K a pill 160K for 2 months, hes cured now at a cost. What if the drug companies try to do this, every kid would have to be tested, the test can make a lot more money than the vaccine. Sorry but drug companies are vultures and I hope if they go to one its not in the USA.


----------



## baistuff

Can we please stop the conspiracy theory nonsense about people or companies trying to stifle cures? Do any of you know anyone at any drug company?  Has any one of them asked you for a dime? Funny, JHT has, but I don't think anyone of them has solicited anything from any individual here. Have any of you attending an R+D meeting, written a grant proposal? conducted a trial? 

 In the US at least, drug companies have deals so costs can be reduced. Yes, many drugs are VERY expensive. But what you don't realize is that the real bad guys in what comes out of our pockets are INSURANCE payors, not the drug companies. I have dealt with both.  Have any of you called the drug comapnies directly about discount on drugs?  Do yo know how much free stuff they supply all over the world?  Yes, drug companies may a ton of profits.  Name me one business that is not out to make a killing?  The fight here is with insurance. How is it that one person pays 5 bucks for Uceris, and another 500? It's insurance determined. 

Please realize that the drug company that finds a cure for any disease will be set for life. They all want a cure. I don't see anyone whining about QU biologics. They are a drug company as well. 

Please do not fill a message board of sick, vulnerable people with conspiracy theory. If you have proof of someone squashing progress, then bring it. Otherwise it does not belong here.  MAP is worth investigating and is being investigated- no one is stopping JHT, Nasser or anyone else from anything. 

Humira and Remicadee, though expensive and full of side effects, have given many people their lives back- whether from IBD, rheumatoid Arthritis, or countless other conditions. 

Maybe the makers of Humira and Remicadee shot Kennedy as well.


----------



## xeridea

I sort of have to agree with baistuff on this point.



> Can we please stop the conspiracy theory nonsense about people or companies trying to stifle cures


Drug companies are a for profit business, and answer to their shareholders like any other corporation. They are no different than banks, oil companies, technology companies, etc. etc. etc. for wanting to make money. It's their raison d'être

Though I don't personally believe MAP is behind all cases of CD, I hope that Prof. Hermon-Taylor's vaccine proves out to be effective in at least a portion of the population, and that he, his family, and the investors backing his efforts  become filthy rich as a result. Even if it cures only a small subset of CD patients, that might shift thinking enough and open new doors in how others are looking at the disease.

In the meantime, I'm glad Remicade and Humira are available. They do help a lot of people manage this disease pretty well. And there are other big pharmas on their heels bringing more effective treatments to market, which I'm sure will be as shockingly expensive.


----------



## JMC

xeridea said:


> Drug companies are a for profit business, and answer to their shareholders like any other corporation. They are no different than banks, oil companies, technology companies, etc. etc. etc. for wanting to make money. It's their raison d'être


I have no time for vague conspiracies theories and I completely agree it has no place on a forum like this, _unless_ someone has a concrete and specific example. 

I do believe however, that capitalism fails to produce optimal results because the incentive to maximise profits is often contradictory to the best health outcome for patients because _only sick people need drugs_.  Anyone who has worked for a large corporation knows that the pursuit of profits often leads to morally questionable decisions being made and it does not require a huge stretch of the imagination to believe that a pharmaceutical company would protect multi-billion dollar revenues by disrupting the trial of a competitor cure.

It is also worth noting that the issues with medical insurance companies that exist in the USA, largely do not occur in Europe because we have effective socialised health care.


----------



## JMC

baistuff said:


> Please realize that the drug company that finds a cure for any disease will be set for life. They all want a cure. I don't see anyone whining about QU biologics. They are a drug company as well.


That is only true if there is more money to be made from the cure, than drugs which create an on going dependence.


----------



## baistuff

JMC said:


> That is only true if there is more money to be made from the cure, than drugs which create an on going dependence.



If a drug company cured crohns or any other condition tomorrow, they would get a nobel prize, have media, universities, and other institutions clamoring for their time, be on the book and lecture circuit, and be given grants and resources for every other condition.  The money from that drug, or other drug would be a side point.  It like the real elite pro athletes ( derek Jeter, Lebron James, Sidney Crosby)- sure, they make a high salary, but their real money comes from endorsements, commercials etc... 

The fortune and fame that would come with a cure is immeasurable. Sure, they make money off the chronic stuff, but it's nothing compared to what a real cure would bring.  BTW- it's not only sick people who take meds chronically (Lipitor anyone????? - look at the primary prevention studies and who sponsored them.) 

And while it's true that individuals in any big corporation can lose their moral compass organizations that have to answer to shareholders, the government, university partners, and investors have a lot more at stake than rogue lone rangers in that department. A drug company caught lying about something (Vioxx anyone? ) will pay dearly. 

Interesting discussion. 

I still say here in the US the insurers are the root of all evil. Their goal is NOT that of the patient. I speak to medical directors of insurance companies regularly. I wish I could rip the licenses up.


----------



## Karma

I'm not an expert but as I understand it, as a company you make decisions based on projections of risk, effort required and potential return on investment.

It's not hard to imagine the results of these calculations may make treatments which generate ongoing revenues more attractive than developing a single cure.

Thank goodness for the mavericks of the world, university research and public grants.


----------



## xeridea

Karma said:


> ...
> It's not hard to imagine the results of these calculations may make treatments which generate ongoing revenues more attractive than developing a single cure.
> ...


This is a somewhat nuanced perspective I have that I submit for your consideration. Executives at corporations probably are more focused on quarter-to-quarter results with an eye on that year's annual results. If we are to look at the stats that say 4 million people worldwide have Crohn's, I could fathom a cure having a market value of somewhere in the $200 billion range. That's just to take care of the current cases. There will likely be a smaller stream of newly diagnosed cases annually to keep the pipeline somewhat filled.

I don't know, most executives sit at the head of a company 5, maybe 7 years? I think they would gladly jump on the chance for a blockbuster blow-out with 100's of billion dollars worth of short term gains on their watch rather than hunker down  for the long haul of 2 - 5 billion a year to for a maintenance drug.

Also consider, in the U.S. at least, patents on drugs last only 20 years from when filed. Since most companies file the patent before clinical trials start, the effective profitable life of a drug is usually 8, maybe 10 years.

Ultimately I think the cards are stacked in favor of someone finding a cure for Crohn's. There are a lot of smart people working on the problem, and I think every single one of them will be happy with the rewards, both tangible and intangible, once they do.


----------



## JMC

xeridea said:


> I don't know, most executives sit at the head of a company 5, maybe 7 years? I think they would gladly jump on the chance for a blockbuster blow-out with 100's of billion dollars worth of short term gains on their watch rather than hunker down  for the long haul of 2 - 5 billion a year to for a maintenance drug.


Ignoring the fact that I think you are an order of magnitude too high on the commercial benefit of a Crohn's cure, where are the examples of drugs that _cure_ a disease generating huge revenues either in the short or long term?


----------



## baistuff

I think we are throwing around terms which really are not medically accurate. 

There really is no disease out there than can be CURED with medication. Yes, UC, some cancers, etc... can be "cured" with surgery, and pediatriac cancers with some medication, but you will be hard pressed to find any medication that "cures" a chronic condition.  Cure meaning the disease state is gone, never to come back after treatment.  We are good at at PREVENTING many conditions- polio, measles, and have evidence that avoidance of things can PREVENT diseases (smoking asbestos with COPD,) but we cannot understand the magnitude of what CURING a disease would mean since we really have not accomplished that very well.

We are also quite good now at extending and improving life of those with chronic conditions- HIV, autoimmune diseases, CHF, some cancers, even without curing them.

IBDers also need to understand that there are many folks simply on a 5-ASA and are back to normal. I've seen patients in their 60's and 70's with UC or CD for decades who do fine, have not needed surgery and no complications and don't need a "cure" per se.

But back to the topic at hand, finding a cure for a disease that is increasing in incidence and prevalence world wide, can indeed cause significant morbidity would be an absolute goldmine for whomever stumbles upon it.


----------



## xeridea

JMC said:


> Ignoring the fact that I think you are an order of magnitude too high on the commercial benefit of a Crohn's cure, where are the examples of drugs that _cure_ a disease generating huge revenues either in the short or long term?


Well okay, maybe I've overshot my estimate. But you have new drugs like Sovaldi that has about a 90% "cure" rate for HEP-C and I think will generate close to $10 billion in sales in its first year. And its just out sister drug Harvoni is expected to outpace even that.

I think when a "cure" for Crohn's is found whoever brings it to market will look at, for lack of a better term, the opportunity cost of the disease. So if they're curing it, how much costs are they saving from ongoing traditional treatment. I think in the US the average cost for care for CD is somewhere in the $10K ballpark if not using biologics, and close to $30K or more if you are. That adds up quickly year over year.

Maybe only the refractory cases will get approved for any expensive cure option, but likely many more will be clamoring for it.

All I'm getting at is that in my opinion, if someone were to find a cure for CD they'd work to bring it to market. I don't think there's some collusion between drug companies to sit on a cure so they can collectively peddle ongoing treatment therapies.


----------



## 7vNH

The fame and glory goes to the "inventor", not the company.  We all remember Jonas Salk, but do we even know what company he worked for or what company produced the vaccine?



> The money from that drug, or other drug would be a side point.


A corporation that doesn't care about money :ylol: 



> but you will be hard pressed to find any medication that "cures" a chronic condition


A straw man you've generously provided.  Chronic, by definition, means we haven't figured out how to cure it.  What we're really talking about the difference between the profitability of a drug you need continuously for the rest of your life versus something that can be a "one and done", whether the result is called a "cure" or not.



> But back to the topic at hand, finding a cure for a disease that is increasing in incidence and prevalence world wide, can indeed cause significant morbidity would be an absolute goldmine for whomever stumbles upon it.


And it would be tragic for those companies now trying to recover their R&D expenditures or booking profits on maintenance drugs.

Concerning insurance companies, they are simply machines.  Like a blackjack dealer...although the dealer is just a machine, they are the one you see taking your money, so it's easy to hate them, but it's not their fault!  And as mentioned, insurance companies are not playing the same game throughout the world; they are just especially annoying in the US.  But other systems, like single payer, have their annoying aspects too.

I think the world is heading in the right direction: more smaller biotech companies that a breakthrough "cure" drug would be a pure bonanza, and no need to balance the equation of having a huge loss of a maintenance drug in one column and a questionable gain for the new "one and done" drug.

The problem, and this is an example for which I have personal experience, is that the big companies buy-up the small companies.  For instance, my BIL worked for a company with about 15 MD PHD's that had a promising rat model having to do with islet cell restoration.  They were happy to keep developing, but Novo Nordisk came along and gave them a buy-out offer so huge that nobody in the company could say "no".  My BIL hasn't needed to work in years because of that influx.  He's involved in other start-ups, but goes without a salary most often.  Anyway, my BIL insists that something should have been said about the rat model by now, good or bad, and thinks it's simply been buried by a company that lives and breaths maintenance drugs.  That's not me saying that, it's the guy who worked on the model.  So, yes, maybe the model went nowhere and there was nothing to report.  But maybe not.  The point I'm trying to make is that these kinds of buyouts happen all of the time, so the more small companies that startup and resist that temptation, the better.


----------



## baistuff

This whole discussion is missing a bigger picture. Curing something like crohn's is very difficult to accomplish.  It's an umbrella disease whose root cause might be different in different individuals. Why is it that a small dose of Lialda keeps some people disease free for years at a time, and others fail every weapon out there? 

I am a huge fan of SSI and I think Qu biologics is onto something. But even their approach will likely not work for everyone, and be a permament fix for many of those it does help.  Disease states for multiple reasons (some we understand some we don't) present phenotypically in vastly different ways in different hosts.  So "cure Crohn's" is a very naive statement we are all making, since there are so many different "crohn's" out there.  Why do some with fecal transplants get "cured" and others actually get worse? 

And it's true for so many other diseases- cancers, autoimmune diseases, infections. It's so hard to know what one condition will do to that particular host.  and that is one reason a "cure" is very hard to find that will fit all.


----------



## Reef08

baistuff said:


> I think we are throwing around terms which really are not medically accurate.
> 
> There really is no disease out there than can be CURED with medication. Yes, UC, some cancers, etc... can be "cured" with surgery, and pediatriac cancers with some medication, but you will be hard pressed to find any medication that "cures" a chronic condition.  Cure meaning the disease state is gone, never to come back after treatment.  We are good at at PREVENTING many conditions- polio, measles, and have evidence that avoidance of things can PREVENT diseases (smoking asbestos with COPD,) but we cannot understand the magnitude of what CURING a disease would mean since we really have not accomplished that very well.
> 
> We are also quite good now at extending and improving life of those with chronic conditions- HIV, autoimmune diseases, CHF, some cancers, even without curing them.
> 
> IBDers also need to understand that there are many folks simply on a 5-ASA and are back to normal. I've seen patients in their 60's and 70's with UC or CD for decades who do fine, have not needed surgery and no complications and don't need a "cure" per se.
> 
> But back to the topic at hand, finding a cure for a disease that is increasing in incidence and prevalence world wide, can indeed cause significant morbidity would be an absolute goldmine for whomever stumbles upon it.



Many cancers are cured through chemotherapy and bone marrow transplants; not just surgery. Bone marrow transplants have also cured autoimmune diseases, including Crohn's (of course they are very risky). Antibiotics and antivirals cure many infectious diseases. In fact, there is a new drug that recently came out that cures Hepatitis C. Some recent gene therapy and stem cell trials have cured blindness.


----------



## Karma

Let's not forget vaccines when it comes to successes.  What are the reasons for there not being an ebola vaccine yet?


----------



## baistuff

Reef08 said:


> Many cancers are cured through chemotherapy and bone marrow transplants; not just surgery. Bone marrow transplants have also cured autoimmune diseases, including Crohn's (of course they are very risky). Antibiotics and antivirals cure many infectious diseases. In fact, there is a new drug that recently came out that cures Hepatitis C. Some recent gene therapy and stem cell trials have cured blindness.



Besides some testicular tumors (which may be more a hormonal response) and some liquid malignancies (non solid tumors like hodgkins, some leukemias,) please name one cancer in adults that is CURED with chemotherapy.  I will go organ by organ.

Breast- can be cured with surgery, highly responsive to HORMONAL treatment. Data suggests increases disease free survival with some chemo. No proof chemo CURES the disease. Radiation is of benefit

Prostate- Can be cured with surgery, also high responsive to HORMONAL treatment. Poorly responsive to chemo. Radiation shown to be of benefit

Lung- very little data to suggest chemo adds to disease free survival. Actually in advanced disease, studies show chemo worsens quality and quantity of life

Pancreatic- Poorly responsive to chemo

Stomach- poorly responsive to chemo

Esophagous- poorly repsonsive to chemo 

Brain- Poorly responsive to chemo. Sometimes responsive to radiation

Primary liver- Poorly responsive to chemo

Head and neck squamous- Poorly responsive to chemo. Radiation may be of some benefit

Skin- melanoma- Can be cured surgically - Not treated with chemo. Some Antibody treatments, immunologics may be of benefit

Kidney- can be cured with surgery. Recent evidence shows some increased survival with various treatments, mostly biologic treatments

Colon- Can be cured with surgery. Increased disease free survival with chemo, but not considered curative

Soft tissue sarcoma- poorly responsive to chemo, can only be cured surgically. 

GYN- poorly responsive to chemo. surgery can be curative if caught early. Vaccine to prevent cervical. 

Thyroid- can be cured with surgery, RAI. Not very responsive to chemo

Malignant Schwannowa- treated surgically

Multiple Endocrine Neoplasia- poorly responsive to chemo


Also, keep in mind, except for testicular, ALL STAGE 4 (metastatic cancer) is considered incurable regardless of treatment method.


It is unclear why liquid tumors and testicular tumors respond. may have to do with the neovascular process in solid tumors. May because of other singaling pathways, hornmones, turnover of blood cells.  Though keep in mind that most leukemias in adults and myeloma ares still not curable. Yes, can get some remissions, but they often return.


I also just did a literature search on "bone marrow transplants curing Autoimmune diseases" and came up empty.  Can you please cite evidence to such a claim? I admit I don't know much about this subject, but certainly would welcome the change to read up on it.


----------



## baistuff

Karma said:


> Let's not forget vaccines when it comes to successes.  What are the reasons for there not being an ebola vaccine yet?



Vaccines certainly represents some og the best advances in modern medicine, and personally I think will be the key to dealing with many ailments. 

They are not as easy as they sound though. Many viruses are tricky based on genetics, receptors, proteins inside and outside of viral cells. 15 years ago everyone said an HIV vaccine was around the corner. I remember a number of us having a good laugh at that one. Yeah, we will probably get one at some point, but they take time. Even the goddamn flu changes season to season, and that kills more than ebola or HIV nowadays.

Ebola until recently was not considered a virus needing a ton of effort. Prevention until recently was actually pretty easy.  But since today we care that people with potential exposure can ride their bikes and sneeze in public b/c it's politically correct, more than we do actually taking some unpopular steps in stopping its spread, we are where we are. Once more people get it, we isolate more blood, study the virus, the antiboides to it, some of the responses to it- how it triggers DIC, vessel leakage etc... we will get there. Will just take time.


----------



## Reef08

baistuff said:


> Besides some testicular tumors (which may be more a hormonal response) and some liquid malignancies (non solid tumors like hodgkins, some leukemias,) please name one cancer in adults that is CURED with chemotherapy.  I will go organ by organ.
> 
> Breast- can be cured with surgery, highly responsive to HORMONAL treatment. Data suggests increases disease free survival with some chemo. No proof chemo CURES the disease. Radiation is of benefit
> 
> Prostate- Can be cured with surgery, also high responsive to HORMONAL treatment. Poorly responsive to chemo. Radiation shown to be of benefit
> 
> Lung- very little data to suggest chemo adds to disease free survival. Actually in advanced disease, studies show chemo worsens quality and quantity of life
> 
> Pancreatic- Poorly responsive to chemo
> 
> Stomach- poorly responsive to chemo
> 
> Esophagous- poorly repsonsive to chemo
> 
> Brain- Poorly responsive to chemo. Sometimes responsive to radiation
> 
> Primary liver- Poorly responsive to chemo
> 
> Head and neck squamous- Poorly responsive to chemo. Radiation may be of some benefit
> 
> Skin- melanoma- Can be cured surgically - Not treated with chemo. Some Antibody treatments, immunologics may be of benefit
> 
> Kidney- can be cured with surgery. Recent evidence shows some increased survival with various treatments, mostly biologic treatments
> 
> Colon- Can be cured with surgery. Increased disease free survival with chemo, but not considered curative
> 
> Soft tissue sarcoma- poorly responsive to chemo, can only be cured surgically.
> 
> GYN- poorly responsive to chemo. surgery can be curative if caught early. Vaccine to prevent cervical.
> 
> Thyroid- can be cured with surgery, RAI. Not very responsive to chemo
> 
> Malignant Schwannowa- treated surgically
> 
> Multiple Endocrine Neoplasia- poorly responsive to chemo
> 
> 
> Also, keep in mind, except for testicular, ALL STAGE 4 (metastatic cancer) is considered incurable regardless of treatment method.
> 
> 
> It is unclear why liquid tumors and testicular tumors respond. may have to do with the neovascular process in solid tumors. May because of other singaling pathways, hornmones, turnover of blood cells.  Though keep in mind that most leukemias in adults and myeloma ares still not curable. Yes, can get some remissions, but they often return.
> 
> 
> I also just did a literature search on "bone marrow transplants curing Autoimmune diseases" and came up empty.  Can you please cite evidence to such a claim? I admit I don't know much about this subject, but certainly would welcome the change to read up on it.


You said no cancers can be cured via chemo. Now you're excluding blood cancers, even though those are valid examples. 

Here's news about the recent Hepatitis C cure: 
http://www.thestar.com/life/health_..._available_but_only_if_you_can_afford_it.html

Here are example of autoimmune diseases being cured by bone marrow transplants: 

http://www.ncbi.nlm.nih.gov/pubmed/17908668

http://www.emaxhealth.com/1020/bone-marrow-transplant-potential-cure-crohns-disease

http://www.ctvnews.ca/health/scleroderma-patients-seek-experimental-u-s-stem-cell-therapy-1.2071491

http://ottawacitizen.com/news/national/stem-cell-advocates-therapy-launch-10-year-1-5b-action-plan

https://www.bcbsal.org/providers/policies/final/485.pdf


----------



## baistuff

1) Youve cited some anecdotes- not hard evidence, and that is only in your first citation. Don't get me wrong, the case reports are important, but we don't determine what is a "cure" for the public baed on case reports. Should it warrant more studies? for sure. 

2) please don't bring internet media outlets as evidence. They are not. Again. Let's study them, but to claim that have "cured" things is way premature. I've been on no meds and feeling fine 4 plus months post FMT, but you will NOT hear me say FMT cures crohns let alone me saying I myself am cured. It's factually inaccurate.  

BTW- the 2 patients in the study on pubmed- how are they doing now 7 years later? 

The new TREATMENT for hep C is exciting.  Let's see about if it's a cure. viruses are a funny thing. Remember the baby who was "cured" of HIV a couple of years ago?  woops.


----------



## AJC - Australia

Everyone is entitled to an opinion and there is surely many of them being voiced here!

If i owned Remicade or Humira and I was making several BILLION dollars a year out of it, i would want to protect my 'interests'. If a modern t-cell vaccine could potentially releive the disease state in hundreds of thousands of people with Crohns, who are currently my 'customers', each paying $40,000 a year to have Remicade or Humira, then it is in my interests to know about this new vaccine and if possible, to buy it. 

That is just perfectly logical and there is no argument that we, as sufferers of Crohn's who are taking Remicade (or not) should be well prepared for a drug company to buy the vaccine (if it works) and then charge us as much money as they can to make as much money as they can from the 'cure'.

To suggest Baistuff, that any of us believe in conspiracy theories because we are stating the obvious- i think that is a bit much.


----------



## xeridea

From what I've read, Prof. Hermon-Taylor has been working on this problem a long time. He's not growing any younger while he's trying to push this forward. My guess is that he and his colleagues will try to bring it to double-blind placebo controlled phase II trials. Hopefully that will show promising results and will spur interest from some big pharma companies to license it and take it to the next level, Phase III trials. Those are long, arduous, expensive processes. Then you have regulatory approvals, which is another matter onto itself. Research scientists can do the great work of discovery and proving out their research, it seems that bringing drugs to market is the work of pharmaceuticals.


----------



## baistuff

So we automatically hate anything Pharma establishment related b/c they just want our money, and sit in their fancy board rooms laughing at us for spening money on their horrible drugs.  But we encourage each other to give money and support to a lone ranger simply because he is anti establishment. 

Seems to me this logic is based more on emotion and frustration than science and evidence.  Just this idiot's opinion.


----------



## kiny

You should always have some kind of scepticism I feel. When Janssens tried to extend their infliximab patents with years (all they got was 6 months), this wasn't in the interest of patients. http://www.ft.com/cms/s/2/3b389dae-b100-11e2-80f9-00144feabdc0.html#axzz3I3jFCeoA

When pharma claimed that etanercept was working for crohn's disease, only to find out years later through studies that etarnercept never worked for crohn's disease and many of the studies were manipulated. This wasn't in the interest of patients.

When doctors warned of the dangers of Tysabri, but pharma companies lobbied governments to use it anyway, and multiple people died in the studies. This wasn't in the interest of patients.

Primum non nocere, not harming the patient should always be the number 1 priority.

There are multiple cases where pharma has not been on our side. Yes we need better medication, and yes some people mean well, but let's not kid ourselves, at the end of the day this is about money, shareholders and profits.

The fact someone is willing to dedicate their life to help us, without any financial ties, he should get our support. There are other things people waste their money on, whether this vaccine is helpful or not, data will be gathered and we'll have a better understanding of crohn's disease regardless of the outcome.

And I say this as someone who has been tested for MAP twice, twice with negative results. Yet I still think crohn's disease patients deserve an answer to this question that has been debated for years.

All I can see is a very intelligent person who means well and is trying to help us. Crohn's disease is not a disease that gets a lot of media attention, our plight is often unheard. The few people who do mean well, and who go through extraordinary lengths to try to help us, and there is more than one, deserve our support and respect. They don't come around very often.


----------



## VilliVagabond

Kiny,

You make an excellent point. Without delving too much into psycho-social norms and the psychiatry behind human motivation, it would be entirely inaccurate to assume that the individuals running the pharmaceutical companies actually want to make people better. The problem with the United States (and why no "cure" for any modern disease will ever come from our nation) is the current bureaucracy that essentially ensures pure, academic, "non profit driven research," can only be done in a university setting, where doctors are at the mercy of massive foundations (like the CCFA, which is a travesty of a foundation...funding massive studies into Remicade and can't even spare $15k for Dr. Taylor) to fund their research. Essentially, big pharma, through partnerships with foundations and an elaborate game of smoke and mirrors, assumes indirect control over the research being done.

I am HUGELY skeptical of these firms, as you can tell, but nothing's gonna come out of the US. Lean on systems where the actual incentive is to find a cure (read: single payor system) where the government drives incentives for a cure because it's paying for it (Canada: Qu Bio, Israel: RedHill Bio, Dr. JHT, UK)


----------



## mf15

Perhaps big pharma knows exactly what they are doing with biologics,if this testing is meaningful.
Killing MAP. One way or the other. 
Don't know how this one slipped out it is a 2010 poster.
Old Mike
http://www.pulsus.com/cddw2010/abs/114.htm

Believe I have also read that specifically Remicade kills MAP infected macrophages, but will need to hunt that down again.
I have also been tracking papers that basically indicate that since 1942 just about all the IBD drugs except perhaps for pred control MAP,at least in culture or test tubes. So at the time they really did not know,but perhaps now they do.


----------



## JMC

The paper with the results of the clinical trial in cattle has been published.  Tim Bull is Prof Hermon-Taylor's collaborator at St. George's in London.

*Immunity, safety and protection of an Adenovirus 5 prime - modified Vaccinia virus Ankara boost subunit vaccine against Mycobacterium avium subspecies paratuberculosis infection in calves*

http://www.veterinaryresearch.org/content/45/1/112/abstract


----------



## kallaikoi

Hi, by the supporters of the theory MAP's as the origin of CD how can explain the intermittent outbreaks of Crohn's disease? An infectious disease can cause these symptoms intermittently? jonhe's disease there are periods of activity and periods of remission and inflammation?


----------



## rollinstone

kallaikoi said:


> Hi, by the supporters of the theory MAP's as the origin of CD how can explain the intermittent outbreaks of Crohn's disease? An infectious disease can cause these symptoms intermittently? jonhe's disease there are periods of activity and periods of remission and inflammation?


That's a good question, I think the difference being as humans we are able to seek help when we feel sick and therefore usually have the intervention of medicine to get into remission, lots of this medicine actually has anti map functionality.


----------



## Reef08

rollinstone said:


> That's a good question, I think the difference being as humans we are able to seek help when we feel sick and therefore usually have the intervention of medicine to get into remission, lots of this medicine actually has anti map functionality.


What about spontaneous remission?


----------



## baistuff

Johne's does not cause fistulas, fissures, and fibrostenosing disease.  Cattle have 4 stomachs and chew their cud and are mostly herbivores. 

minor differences only I'm sure.


----------



## rollinstone

Reef08 said:


> What about spontaneous remission?


Not sure about spontaneous remission, Not all cases of crohn's are caused by MAP, but at least some are, all you need for a diagnosis is idiopathic patchy inflammation through the intestines, some people have gone inro sustained remission from fmt, some have gone into sustained remission (histological) from the ssi vaccine, each have different modalities to how they work.. But the point I'm trying to make is there's definitely different underlying causes for crohns, it's an umbrella term. IMHO AIEC and MAP are two definitive culprits and I absolutely believe CD is pathogenic...


----------



## Poppysocks

So with the 70k now raised does this mean the MAP diagnostic test will definitely be made? What is the timetable for this to be done?


----------



## Daytripper

Yes I definitely want to know more about this. I felt really happy when I've read the most recent articles, however I'm trying to not get my hopes up too high. I know this needs a lot of funding.....and I don't know if you lot think this will be hopeless....but recently there's been the ice bucket challenges and the no make up selfies to raise awareness and money for a particular cause. The ice bucket challenge in particular was great because it wasn't a 'mainstream' disease if you get me, and yet it raised such a lot of money and awareness. What does everyone think if we could get something going like this on Facebook and Twitter to raise awareness and money, along with informing everyone that a cure might not be far off if we just can get the funding! I was thinking of something like ..... *#getyourbellyout* and then post a photo of your belly (whether you've got a bag, whether you're bloated, whether you've got scars, show everything with pride!) and then tag your family and friends to do the same and donate to the charity. I'm sure they would show their support and before long it would pass along the line. What do you all think? Xxx :tongue:


----------



## Malgrave

Daytripper, please visit: https://www.facebook.com/crohnsmapvaccine and https://www.facebook.com/groups/crohnsvaccine/

We were just about to start a campaign like getyourbellyout in March but the original UK based campaign supporting CCUK launched it just slightly before us. So we missed that train and didn't want to "copy" the idea.

If anybody have any ideas how to get more publicity for this please send your ideas also to the CMV page.


----------



## Daytripper

Thanks for that Malgrave. I have just messaged them with the idea, so watch this space


----------



## Mattie

July 2014 paper from Dr Borody re MAP

http://www.futuremedicine.com/doi/pdf/10.2217/fmb.14.52


----------



## Crohn2357

Mattie said:


> July 2014 paper from Dr Borody re MAP
> 
> http://www.futuremedicine.com/doi/pdf/10.2217/fmb.14.52


Thank you very much.


> ●Targeting MAP using antibiotics
> MAP has fulfilled Koch’s postulates as the cause
> of CD[12], a set criteria used to prove causality of
> a disease by a microorganism. As such anti-MAP
> treatment is increasingly prescribed as a therapy
> for CD using a combination of antibiotics that
> targets MAP and has been shown to be quite
> effective[13]. To prevent development of resist
> -ance during long term therapy a combination of
> antibiotics is required to target the bacterium at
> all stages of the life cycle including reproduction
> and dormancy. A randomized controlled trial
> in CD using such a combination is currently in
> progress and this could prove the effectiveness
> of a therapy that targets the MAP organism
> [14].


Authors refer to this trial:
http://www.clinicaltrials.gov/show/NCT01951326

Drug: RHB-104
95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine
5 RHB-104 capsules administered orally BID

I've used clarithromycin 500mg twice a day for 10 days. Used it for intestinal infection. Along with other side effects, psychological side effects were unbearable.

I don't have any experience with the other antibiotics but I'm deeply concerned about long term use of RHB-104.
-------------------------------------------
Some links on natural inhibitors:
http://www.ncbi.nlm.nih.gov/pubmed/18676709
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2233768/
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029631


----------



## rollinstone

Crohn2357 said:


> Thank you very much.
> 
> Authors refer to this trial:
> http://www.clinicaltrials.gov/show/NCT01951326
> 
> Drug: RHB-104
> 95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine
> 5 RHB-104 capsules administered orally BID
> 
> I've used clarithromycin 500mg twice a day for 10 days. Used it for intestinal infection. Along with other side effects, psychological side effects were unbearable.
> 
> I don't have any experience with the other antibiotics but I'm deeply concerned about long term use of RHB-104.
> -------------------------------------------
> Some links on natural inhibitors:
> http://www.ncbi.nlm.nih.gov/pubmed/18676709
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2233768/
> http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029631


What psychological side effects were you having if you don't mind me asking? I thought most people tolerated the therapy well. At least everyone iv spoken to has


----------



## Crohn2357

rollinstone said:


> What psychological side effects were you having if you don't mind me asking?


I'd keep it with me. I must say the effects may vary for each person.
Here is a link about side effects:
http://www.drugs.com/sfx/clarithromycin-side-effects.html


----------



## rollinstone

Wow some of those sound really heavy


----------



## Malgrave

http://crohnsmapvaccine.com/first-milestone/


----------



## Crohn2357

It would be nice if someone start a nice topic about the vaccine on places like reddit. I saw a topic about lyme disease vaccine on reddit today. It is highly upvoted. 
There are these topics:
http://www.reddit.com/r/CrohnsDisease/comments/1huo3y/what_happened_to_all_the_hype_about_treating/
http://www.reddit.com/r/CrohnsDisease/comments/1x3hyu/is_a_cure_for_crohns_disease_in_sight/
http://www.reddit.com/r/CrohnsDisea...ns_map_vaccine_info_truly_hoping_this_is_the/
But a topic more worthy of attention maybe can reach high votes and help raising awareness. Just an idea.


----------



## VilliVagabond

In any case, funding a 2.6 million dollar vaccine to determine whether a multi-billion dollar disease can be cured seems like a viable option to me. This has become public enough that if it disappears, people will ask questions. 

And to the point of the person who gave the novonordisk story - JHT doesn't give two s***s about money, at this point. He's dedicated 30 years of his life to this pursuit, he's pushing 80, and he still goes to work every day to figure this out.

Maybe he wants to pass some money on to his kids? Then again, I'm pretty d*** sure that Amy Hermon Taylor doesn't care either, unless her genuine empathy and compassion is all fake - and believe me, if it was, she would be selling people on the big screen as an actress, for the quality of the performance she can put on.

People deserve to have an answer to this godforsaken controversy, and whether it's a yes or a no, it will push the progress of Crohn's research ahead - because if no, people can stop whining about whether or not it cures the disease.


----------



## Mommabear

Excellent Villivagabond!


----------



## Mattie

Well said.


----------



## sir.clausin

Sorry if it´s a repost

http://www.nature.com/nature/journal/v491/n7422/abs/nature11582.html


----------



## xeridea

What I like about the professor's MAP vaccine is that it moves the mark to push for treating CD with a vaccine, rather than the current small/large molecule agents. There is some really promising advancement being made on the vaccine front. Just yesterday some news came across the wires about using a vaccine to stop progress of breast cancer in a large percentage of the study group. Even if MAP proves not to be the catch-all antigen, there seems to be some strides being made in identifying the culprits and hopefully developing vaccines targeting those.

And the recent rash of publicity in developing an Ebola vaccine is channeling billions of new £$¥ in the general direction of vaccines development. 

I'm cautiously optimistic this nut will be cracked in the next decade.


----------



## baistuff

xeridea said:


> What I like about the professor's MAP vaccine is that it moves the mark to push for treating CD with a vaccine, rather than the current small/large molecule agents. There is some really promising advancement being made on the vaccine front. Just yesterday some news came across the wires about using a vaccine to stop progress of breast cancer in a large percentage of the study group. Even if MAP proves not to be the catch-all antigen, there seems to be some strides being made in identifying the culprits and hopefully developing vaccines targeting those.
> 
> And the recent rash of publicity in developing an Ebola vaccine is channeling billions of new £$¥ in the general direction of vaccines development.
> 
> I'm cautiously optimistic this nut will be cracked in the next decade.





This is probably the most intellegent post on this board about MAP.


----------



## VilliVagabond

To the above post:

Everyone will always disagree about the cause of an issue, whatever its nature. The fact of the matter is that we need to appreciate people who work tirelessly to try and find answers, whether they be right or wrong.

Whatever the outcome of the current studies on MAP (RHB 104, the vaccine), at least we have people fighting for us. That's all we can ask. If, at the end of the day, MAP isn't the cause, this man dedicated 30 years of his life to trying, and we can't fault that, at all. Not to mention the fact that an ANSWER, no matter what that answer is, will be good for us. If MAP is not the cause (as it is discovered) then those who are putting time and money into figuring that out can redirect their efforts to the next target, eliminating potential culprits and causality until we find the solution.

Support those who are working for us in any way you can. Not saying financially. Send them your prayers, or your thoughts, or if you feel like making a donation, your money. Help fundraise. Mentor people with the disease. The greatest issues in the world are solved by a communal intention to derive a solution - 1000 people working toward a common goal is better than 1.


----------



## yourshamim

Can anyone have latest progress on MAP ?when it will be available for patient ?


----------



## VilliVagabond

To the post above:

Pre-GMP (General Manufacturing Process) manufacturing has begun (which will take approximately 3 months. Assuming funding goals are met, the GMP manufacturing process will take approximately 1 year, after which the human trials will start (another year). During the trial phase, the manufacturer will aim to make the vaccine available on a named-patient basis, which will allow people with need to receive the vaccine.

This is, of course, assuming funding goals are met.


----------



## Malgrave

Latest post on the Crohn's MAP Vaccine fb site:
(In the end also a link to the JustGiving page where you can see the latest state of play re the fundraising...)

Here Come the Heroes!

Would you like to know who the Crohn's MAP Vaccine Heroes are? If yes, please continue reading and watch this place in the coming days...

We live half a world away from each other, but share a bond that is unshakeable. We are the Crohn's MAP Vaccine Heroes, a growing team consisting of “Crohnies”, devoted parents of “Crohnies”, an endearing grandfather of a “Crohnie” and last but not least, the daughter of the inventor of the Crohn's MAP Vaccine who ran her very first marathon - and another one - just to raise money for our cause. Why are we so passionate about our fundraising efforts? The answer is simple - Crohn’s MAP Vaccine is very likely the cure that we have all been waiting and hoping for.

For three decades, Professor Hermon-Taylor has been a champion of Crohn’s sufferers around the world, most of whom are unaware of his steadfast and indomitable perseverance in the face of bitter debate by his peers. During this time he has tenaciously studied and analysed MAP and its role in Crohn’s Disease and has devoted his retirement years to developing a vaccine that will very possibly bring an end to the suffering of millions. The tide is turning and even some of the most ardent critics can no longer ignore the mounting evidence that MAP plays a very significant role in causing Crohn’s Disease.

Would you like to play a part in the making of medical history? The incredible Crohn's MAP Vaccine story is unfolding and you can be a part of it! For the first time, we have very real hope. The finalisation of the development of the very important, simple diagnostic MAP blood test will bring this vaccine to the human trial stage. The only thing that stands in the way of completing both the test and the human trial is a lack of funding. Crohn’s MAP Vaccine Heroes have collectively raised more than £75,000 on the way to our next intermediate target of £120,000. That’s where you can play a significant role. Will you be our next Crohn’s MAP Vaccine Hero? Will you pick up the baton and help take Professor Hermon-Taylor’s Crohn’s MAP Vaccine through the finish line? We WANT YOU and we NEED YOU!

If you would like to be a Crohn's MAP Vaccine Hero, please send us a message on our Facebook page and we will help you get started.

***
IT'S TIME TO CURE CROHN'S!
https://www.facebook.com/CrohnsMAPVaccineHeroes
https://www.justgiving.com/teams/crohnsmapvaccineheroes
https://www.crowdrise.com/fundraise-and-…/…/crohnsmapvaccine
http://crohnsmapvaccine.com/


----------



## Malgrave

Fundraising state of play:

https://www.facebook.com/crohnsmapv...267319217/537965589639217/?type=1&pnref=story


----------



## Malgrave

Please feel free to share the pics behind the link below to show your support and who you are supporting for. The whole core family + friends, partners, and "I" of course,... are there, you just need to click the link and start scrolling !

https://www.facebook.com/media/set/?set=a.538523706250072.1073741834.427832267319217&type=1


----------



## mf15

Well if MAP acts the same as TB then really difficult to get rid of.
Hot off the press,zombie state.
Old Mike
http://medicalxpress.com/news/2015-01-zombie-bacteria-tuberculosis.html


----------



## Mommabear

Wow, this study is very interesting! I am not sure if it is good news, or depressing news! I wonder if the new antibiotic that was recently discovered will help. Also, if this "zombie" state happens with MAP, could that help explain spontaneous remissions and subsequent flares?


----------



## wellen1981

http://www.crohnsforum.com/showthread.php?t=69505

Thoughts?


----------



## AJC - Australia

I am understanding that MAP is very different to tuberculosis…one similarlity is obviously the name, but i think that is about it….i wouldnt worry too much about it….Hermon Taylor has tested it on mice, cows and it wont be long until we can get it I HOPE and it will WORK….stay positive crew.


----------



## Malgrave

Campaign update:

http://us10.campaign-archive2.com/?u=438c2985e4a37f81f082c28e3&id=31e7d3e062&e=[UNIQID]


----------



## Himoura

You can beat this into submission through diet and threelac but just know that if you go off your diet you will eventually cause it to come back... if you choose to fight it with antibiotics go on a very strict no sugar no gluten diet.  you may get lucky and kill it off... at least for a while...


----------



## Malgrave

"The Hundred Years War - Beyond Crohn's Disease" looks at the causal role of MAP in a range of so-called autoimmune diseases.

"Perhaps more incriminating for MAP as a zoonotic agent is the increasing number of diseases with which MAP has been related: Blau syndrome, type 1 diabetes, Hashimoto thyroiditis, and multiple sclerosis. In this article, we debate about genetic susceptibility to mycobacterial infection and human exposure to MAP; moreover, it suggests that molecular mimicry between ... MAP and human proteins is a likely bridge between infection and these autoimmune disorders."

http://journal.frontiersin.org/article/10.3389/fimmu.2015.00096/full


----------



## Poppysocks

Himoura said:


> You can beat this into submission through diet and threelac but just know that if you go off your diet you will eventually cause it to come back... if you choose to fight it with antibiotics go on a very strict no sugar no gluten diet.  you may get lucky and kill it off... at least for a while...


What is threelac?


----------



## Himoura

Poppysocks said:


> What is threelac?


It's a pretty expensive probiotic.  It really turned my life around but it can't cure you.  It just inhibits the progression of the bacteria and can even heal up your intestines to an extent (I had only minor bleeding so I am not sure about effectiveness in extreme cases).  Between diet and three lac I went into remission for years with only minor symptoms but it finally caught up with me.  

I had gotten so carried away being able to eat and drink I didn't realize it was coming back.  When it did I ended up in the hospital three times with sever shortness of breath and gallbladder attacks.  I had to have my gallbladder removed and basically almost died.  I think my infection went systemic?  Was my fault for thinking I could be normal I guess.

So anyway the threelac can help you to be partially normal and even eat some things but don't get too carried away.  It can't cure you.  I still have to take the threelac and diet now or I will get really sick.  (I have tried to go off it and I can't or I will go back to not being able to function and extremely limited diet)

The good News is that the threelac might help avoid bleeding and intestinal surgery and it's completely safe.  I have been on it for many years. 

All I can offer here is a bandaid... let's just hope the vaccine works...


----------



## boax

Himoura, what kind of diet are you on? Please expand on this.


----------



## Himoura

At first I thought I had candida so I went on a no sugar no gluten diet.  I think I am an extreme and rare case as my symptoms came on quick because I was working a construction job that exposed me to a soap chemical I had to breathe all day.  This could also explain why I had minimal intestinal bleeding but insane shortness of breath. The diet stopped the burning but I began to lose a ton of weight and found I couldn't eat hardly anything anymore.

That's the trick.  No sugar no wheat.  I stayed on that diet for about a year or so before I found Threelac and then between the two I got healthy enough to start working and having something that resembled a life again.

I still have to be careful though.  Stray to far off the diet and I could land right back in the hospital.


----------



## Himoura

wellen1981 said:


> http://www.crohnsforum.com/showthread.php?t=69505
> 
> Thoughts?


I am achieving the same results with diet and threelac.  Just like she says though it always comes back if you start eating sugar; it feeds the bacteria which renders all your efforts meaningless.  You have to stay on the diet or you will eventually go out of remission.  I ended up in the ER. 

Something very interesting she says that I also experienced is that the further along you get you start burping.  I could drink a glass of water and I burp as if I drank a can of soda. It's really obnoxious.  Coffee, smells, alcohol, sugar and wheat.  These are the biggest things I need to avoid at all costs to stay in remission.  I can get health enough to eat a little sugar here or there but it just isn't worth it.

I really hope Dr Hermans vaccine can cure this.  Does anyone have any idea when the test will become available?  Is there any way to be tested for maps outside of the new smart test?  Crohns girl says there is but I googled what she said and it doesn't pull up anything.


----------



## AJC - Australia

well said Himoura.
I concur.
coffee, alcohol, sugar and wheat = big no no for me.
particularly sugar.
sugar is so mean, you get the sugar rush, - gives you a tiny bit of energy, which is nice…but long term it messes with you.
forget processed sugar!!!
cocacola, fizzy drinks are a BIG no no.
wheat is easy to avoid these days.

as for the test - it is coming.
via Dr Naser in the USA and Dr Hermon Taylor in the UK.
Wont be long until licensed and available in the US, UK, Australia, South Africa and the other countries where crohns is rife.

good luck everyone.


----------



## Himoura

happy poo poo said:


> well said Himoura.
> I concur.
> coffee, alcohol, sugar and wheat = big no no for me.
> particularly sugar.
> sugar is so mean, you get the sugar rush, - gives you a tiny bit of energy, which is nice…but long term it messes with you.
> forget processed sugar!!!
> cocacola, fizzy drinks are a BIG no no.
> wheat is easy to avoid these days.
> 
> as for the test - it is coming.
> via Dr Naser in the USA and Dr Hermon Taylor in the UK.
> Wont be long until licensed and available in the US, UK, Australia, South Africa and the other countries where crohns is rife.
> 
> good luck everyone.


Excellent thank you for your post!

Dr Naser?  I'm gonna try to get in contact with him.  Is there any contact information available?

Edit~. Never mind I think I found it.   Dr Saleh Naser at UCF in central Florida!!!  That's only 3 hours away from me.


----------



## xeridea

RedHill Bio has licensed UCF MAP test technology and is working with Quest Diagnostics to develop a commercial version for U.S. market as part of their current Phase 3 trials of triple antibiotic treatment. That may likely restrict availability of test to trial participants. So if you hit wall contacting Nasser directly see if you can enroll in trial?


----------



## wellen1981

Just thought I'd post to suggest checking out the 9 part Prof Borody vids on youtube as it goes quite a way to explaining a lot of the things mentioned above, but rather than thoughts it backs up things with evidence.

After my diagnosis last April I spent many months researching to learn all I could about Crohn's and I tried to focus on sources that could be verified, backed up and proven.

Things I learnt along the way were a revelation.

I now understand enough about microbiology to realise that having these conditions means we have to be do right by ourselves in realising and learning that while having this condition we can harm ourselves by eating without knowledge.

One of the first things I learnt was fructose, lactose, and yeast are bad as on a basic level sugars are what things like to use as energy first and foremost.

As for wanting sugar for energy you have to get educated on understanding fatigue more and learn about saline and the importance of the right balance of water and salt in the body - also helps to know that 70% of poop is water so if you are going to the toilet often or after going to the toilet you feel fatigued - you dont need sugar, you need saline so drink a cup of water and munch a bag of salted crisps/chips. Give yourself an hour after and you will have energy again.

As for pain, if you don't have a current obstruction but are in pain in your guts I find eating white rice brings my pain down over a few days and if I eat white rice often enough - the pain actually went completely.

The big one... MILK - Through a very strict diet of exclusion I have come to learn that the lactose in milk makes me very ill but having been tested I am not lactose intolerant.
Switched to lacto free milk and only have it on morning rice crispies (see, rice again) and my morning cup of tea (honestly am trying to switch to herbal teas so I can ditch caffeine completely).

Caffeine is a stimulant and I can tell it makes things worse in my gut especially if I have a coffee (even decaff due to it having some caffeine in it).

I didn't plan to write any of the above but thought others may find it useful.

I should also add that I still have all my guts, don't suffer pain anymore since changing my diet (it was so bad before I spent 2 days a week in bed for the best part of a year), and I am not on any meds - all treatments on offer are working on the premise of managing symptoms anyway but I dont want to be a slave to the meds if i am able to manage by altering my diet instead.

I must end by saying that the above only really covers the symptom side of Crohn's and the work of Borody and Herman Taylor are where I am looking to for the most targetted treatment of the disease itself.

There is evidence to support the understanding that it is not just 1 specific type that causes the conditions but possibly multiple types.
However for people with MAP (in cattle see Johnes disease), the anti-map therapy is proven to be the most effective treatment and yet it still hasnt been introduced everywhere yet.

The sad truth of the matter is that these things take time to go through all the 'proper protocols' before they are used by every hospital up and down a country, tragically though those with the disease are being denied the best treatments and are also having their basic human right to a good quality of life denied by the very health organisations that are supposed to be treating them.


----------



## xeridea

wellen1981 said:


> Just thought I'd post to suggest checking out the 9 part Prof Borody vids on youtube as it goes quite a way to explaining a lot of the things mentioned above, but rather than thoughts it backs up things with evidence.


The good thing is that Prof. Borody's anti-MAP protocol is currently undergoing a well designed randomized, double blind, placebo-controlled, multicenter (63 sites), parallel group study which will give us a good answer on the role of MAP in Crohn's. It's my understanding that the participants will be tested by a new, very sensitive diagnostic test for the presence of MAP. Hopefully the study results will show what proportion of patients tested positive for MAP. That info in itself will hopefully go a long way in settling the MAP-Crohn's controversy. Study runs through November 2016 so we just have to bide our time.

It's good to hear you're having positive results managing your symptoms via diet. There's got to be something there too, though no one's quite seemed to figure out what works for everyone.

Hope scientists and researchers continue their efforts so we get a definitive answer...


----------



## ncman

xeridea said:


> It's good to hear you're having positive results managing your symptoms via diet. There's got to be something there too, though no one's quite seemed to figure out what works for everyone.
> 
> Hope scientists and researchers continue their efforts so we get a definitive answer...


The dietary treatment of Crohn's has already been established through the LOFFLEX diet protocol...the dietary answer for UC has yet to be defined, although probiotics may have the answer.


----------



## Himoura

Too many of us are all describing the same thing.  Sure there could be other causes like other types of mycobacteria, but so many people are having most of the same symptoms.   I have come up with a protocol that can put a person into a deep remission and maybe even kill the bug.  Of course you could easily reinfect yourself, but if that ever happens simply repeat the protocol.  (Disclaimer: I am not a medical professional and assume no responsibility for anyone else.  This is simply an example of what works for me personally and what I have learned in the last 10 years with this disease.)

     Diet.  This is the cornerstone.  No sugar (absolutely as little as possible), no wheat and no lactose.  This is to starve the bacteria.  For example I eat two eggs with Ezekiel bread every morning.  Rice and vegetable bowl for lunch.  Two more pieces of Ezekial bread with butter and some beans for dinner.  The butter is real cream.  It has virtually no lactose.  It's important to drink lots of water (this is a lot of fibre) on this diet and you can snack on corn chips or potato chips.

     Probiotic.  I like threelac but you do whatever you can afford.  Combine diet and probiotic until your stomach goes back to normal and you have no bleeding.  I would even wait a couple of weeks, at least after normalization.  You can even take some vitamin e once you feel better to help speed up the healing.

     Food grade Diatomaceous Earth.  Begin with one scoop or rounded tablespoon every morning and drink lots of water.  This has made a huge impact on me and I am super happy I found this stuff.  I would caution anyone with lots of surgeries or bleeding to make sure you heal with the steps above before you try this.  My father takes it and he had a colostomy bag so I am sure it's safe but better to err on the side of caution.

The silver bullet.  This is the last thing I can offer.  Only do this if you think you have achieved full remission.  Once you do it, if the bacteria did not die it will simply adjust.  This is a one time shot unless you kill the bacteria completely.  Oil of Oregano.  Get the horse pills and take 1 pill 3x a day for 7 days.   It's one of the most powerful antibiotics I ever tried and it's completely natural.  It completely cured me for two weeks.  I thought I was cured and like an idiot began smoking and eating fast foods.  I fed the bacteria back to life and it adjusted.  It will never work for me again.  The weakness of the oil is that the bacteria can adjust to it if you continue feeding it with sugar and junk food.

So that is it.  If you achieve full remission with this congratulations, but just know that it could either be dormant and come back or you could reinfect yourself.  In either scenario simply repeat the protocol and try not to get too carried away.  It's very euphoric thinking your possibly cured.


----------



## wellen1981

Himoura said:


> Too many of us are all describing the same thing.  Sure there could be other causes like other types of mycobacteria, but so many people are having most of the same symptoms.   I have come up with a protocol that can put a person into a deep remission and maybe even kill the bug.  Of course you could easily reinfect yourself, but if that ever happens simply repeat the protocol.  (Disclaimer: I am not a medical professional and assume no responsibility for anyone else.  This is simply an example of what works for me personally and what I have learned in the last 10 years with this disease.)
> 
> Diet.  This is the cornerstone.  No sugar (absolutely as little as possible), no wheat and no lactose.  This is to starve the bacteria.  For example I eat two eggs with Ezekiel bread every morning.  Rice and vegetable bowl for lunch.  Two more pieces of Ezekial bread with butter and some beans for dinner.  The butter is real cream.  It has virtually no lactose.  It's important to drink lots of water (this is a lot of fibre) on this diet and you can snack on corn chips or potato chips.
> 
> Probiotic.  I like threelac but you do whatever you can afford.  Combine diet and probiotic until your stomach goes back to normal and you have no bleeding.  I would even wait a couple of weeks, at least after normalization.  You can even take some vitamin e once you feel better to help speed up the healing.
> 
> Food grade Diatomaceous Earth.  Begin with one scoop or rounded tablespoon every morning and drink lots of water.  This has made a huge impact on me and I am super happy I found this stuff.  I would caution anyone with lots of surgeries or bleeding to make sure you heal with the steps above before you try this.  My father takes it and he had a colostomy bag so I am sure it's safe but better to err on the side of caution.
> 
> The silver bullet.  This is the last thing I can offer.  Only do this if you think you have achieved full remission.  Once you do it, if the bacteria did not die it will simply adjust.  This is a one time shot unless you kill the bacteria completely.  Oil of Oregano.  Get the horse pills and take 1 pill 3x a day for 7 days.   It's one of the most powerful antibiotics I ever tried and it's completely natural.  It completely cured me for two weeks.  I thought I was cured and like an idiot began smoking and eating fast foods.  I fed the bacteria back to life and it adjusted.  It will never work for me again.  The weakness of the oil is that the bacteria can adjust to it if you continue feeding it with sugar and junk food.
> 
> So that is it.  If you achieve full remission with this congratulations, but just know that it could either be dormant and come back or you could reinfect yourself.  In either scenario simply repeat the protocol and try not to get too carried away.  It's very euphoric thinking your possibly cured.


No disrespect but your logic is flawed on multiple points to the result that some of what you did is a red flag and dangerous.

The way you went about things resulted in mistakes being made and at times cost you dearly.

While I admire your honesty in your post regarding disclosure of the mistakes, for anyone else reading it not knowing what exactly to do (that's myself included), all credibility of what you posted is ruined unless you were showing and demonstrating logic and were backing things in the post up with actual sourced data and scientific knowledge anyone reading can then verify.

I have had issues for over 10yrs now but only got really ill in aug 2012 and got diag with CD in apr 2014, so i respect if you have had it for 10yrs and your diag was then that you may know more than the rest of us that have not had our diagnosis that long. But it would be unwise for me to assume that just on the basis of how long one of us has had the condition and also years of having the condition will not ever equate to a persons ability to know subject matter.

I do respect you and your post and honestly thanks, i will take the time to go diggin about the things you cover in your post to see if in amongst the bad things that happened in your journey, there is anything that can be used to positive effect with regards to managing the condition. Will post back once i have looked into the things you covered.

Thanks again for posting and sorry you had the stumbles you did that cost you dearly.


----------



## JMC

I am increasingly of the opinion that diet is important and avoiding foods that may cause reinfection with MAP is essential.  I am currently in the middle of my own experiments with diet which have over the last 6 weeks produced positive results, but it is too early to draw any firm conclusions and I will come back when I have at least 3 months of information to work with.  The bottom line IMO however, is that if you are not carefully thinking about and refining your diet you are probably not as healthy as you are capable of being.


----------



## wellen1981

JMC said:


> I am increasingly of the opinion that diet is important and avoiding foods that may cause reinfection with MAP is essential.  I am currently in the middle of my own experiments with diet which have over the last 6 weeks produced positive results, but it is too early to draw any firm conclusions and I will come back when I have at least 3 months of information to work with.  The bottom line IMO however, is that if you are not carefully thinking about and refining your diet you are probably not as healthy as you are capable of being.


As you are in london what are your thoughts on going on anti-map therapy at guys at st thomas or are you already doing it?

Also the problem with cause of reinfection risk is that the MAP can only be attempted to be destoryed at the moment it divides and it according to those in the know, is a very resilient, slow multiplying bacteria that can take year(s) to divide and be vulnerable to destruction from the anti-map therapy.

What do you think about the current level of care offered in the uk fro nhs and private? Are you as disappointed as i am that patients are not able to chose a more targetted treatment at ANY nhs hospital when guy and st thomas in london are already offering it - i am faced with additional difficulty of being forced to have to travel to there if i want this treatment, utter madness and evidence the nhs is failing us patients.


----------



## Himoura

wellen1981 said:


> No disrespect but your logic is flawed on multiple points to the result that some of what you did is a red flag and dangerous.
> 
> The way you went about things resulted in mistakes being made and at times cost you dearly.
> 
> While I admire your honesty in your post regarding disclosure of the mistakes, for anyone else reading it not knowing what exactly to do (that's myself included), all credibility of what you posted is ruined unless you were showing and demonstrating logic and were backing things in the post up with actual sourced data and scientific knowledge anyone reading can then verify.
> 
> I have had issues for over 10yrs now but only got really ill in aug 2012 and got diag with CD in apr 2014, so i respect if you have had it for 10yrs and your diag was then that you may know more than the rest of us that have not had our diagnosis that long. But it would be unwise for me to assume that just on the basis of how long one of us has had the condition and also years of having the condition will not ever equate to a persons ability to know subject matter.
> 
> I do respect you and your post and honestly thanks, i will take the time to go diggin about the things you cover in your post to see if in amongst the bad things that happened in your journey, there is anything that can be used to positive effect with regards to managing the condition. Will post back once i have looked into the things you covered.
> 
> Thanks again for posting and sorry you had the stumbles you did that cost you dearly.


Your a very condescending person and I don't really appreciate your negativity or ad hominem attacks.  There is nothing flawed in my logic I think you just like to hear yourself sounding superior.

If you don't like what im doing then don't do it.  Nobody is asking you to do anything.


----------



## wellen1981

Himoura said:


> Your a very condescending person and I don't really appreciate your negativity or ad hominem attacks.  There is nothing flawed in my logic I think you just like to hear yourself sounding superior.
> 
> If you don't like what im doing then don't do it.  Nobody is asking you to do anything.



Sorry you feel that way. 
I had hoped you would understand the points I raised amongst my reply but also knew there was a chance you would not accept it so for any offence caused, i apologise but it was not my intent.

Sorry


----------



## JMC

wellen1981 said:


> As you are in london what are your thoughts on going on anti-map therapy at guys at st thomas or are you already doing it?


Yes, I am in London. I am treated at Bart's and the Royal London where there isn't any anti-MAP therapy on offer. I regularly ask my doctor (Prof Rampton) to consider MAP as the cause of my illness but he is sceptical. 



wellen1981 said:


> Also the problem with cause of reinfection risk is that the MAP can only be attempted to be destoryed at the moment it divides and it according to those in the know, is a very resilient, slow multiplying bacteria that can take year(s) to divide and be vulnerable to destruction from the anti-map therapy.


And worse, many of the current therapies (e.g. Humira)may be just putting MAP into a dormant state which is why flare ups are common if you stop them. 



wellen1981 said:


> What do you think about the current level of care offered in the uk fro nhs and private? Are you as disappointed as i am that patients are not able to chose a more targetted treatment at ANY nhs hospital when guy and st thomas in london are already offering it - i am faced with additional difficulty of being forced to have to travel to there if i want this treatment, utter madness and evidence the nhs is failing us patients.


All my surgery has been private which has been excellent. NHS treatment has been more variable and closed minded.


----------



## Himoura

wellen1981 said:


> Sorry you feel that way.
> I had hoped you would understand the points I raised amongst my reply but also knew there was a chance you would not accept it so for any offence caused, i apologise but it was not my intent.
> 
> Sorry


Well I appreciate the apology but i got upset because you totally twisted my post around and tried to make it sound like I'm some crank over here doing dangerous stuff to myself and it "almost cost me dearly".  Give me a break man.

Number one.  The only reason I even landed in the ER at all is because I was in remission for 3-4 years and had gotten used to being able to drink alcohol and eat whatever I want.  I didn't realize the bacteria was just dormant and snuck back up on me.  I have had more success keeping myself in remission than anyone I have ever met or read about except the handful of lucky people who got a triple antibiotic treatment and it actually worked.

Number two.  I am not doing anything "dangerous" too myself.  Threelac and DE are extremely safe and I researched both incessantly before trying them.  I can't even find one negative post about DE.  I'm honestly just being overly cautious since there could be some really sick folks in this thread.

Number three.  Honestly I think it's your logic that's flawed.  I am glad for you that you feel like you have plenty of time to wait around for quality research but some of us don't feel like they have much time.  "Desperate", "nothing to lose" are words I would use to describe this disease when it's in full swing.  It's a nightmare.  I have been suffering with Crohns for over 10 years but was only recently diagnosed.  The medical community in general is just really behind the times.  I had a GI tell me that if I had an ulcer the only treatment option available to me would be surgery.  Really?!  I asked him if he knew who Dr Barry Marshall was and he looked puzzled and said "never heard of him".  He has been practicing for over 30 years.  He also neglected to check my biopsy for h.pylori after my endoscopy.  He said there was no need.

It's great that Dr Taylor may have figured this out.  I applaud him and his daughter but most of the medical community could care less.  They learn what they learn in school and that's it.  They don't typically dig any further because most believe they have been taught everything there is to know about their field.

So if you feel you have plenty of time to wait for this vaccine that's awesome man I'm happy for you but a lot of us don't.  The vaccine is still what... 5 yrs away?.  I really didn't think I was gonna make it much longer after last year but getting the Crohns diagnosis and finding this community has really helped me to finally put all the pieces together and make sense out of what worked and what didn't and why.  I think I got lucky with the three lac and it really kept my intestines from deteriorating, but it also prevented me from getting the Crohns diagnosis sooner since it's basically a diagnosis of exclusion or you get so sick it becomes obvious and requires surgery.


----------



## buttER

I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed. 

Can anyone comment on that before I have to dig out my immunology books again?

In those people however the antibiotic therapy is still a viable option.


----------



## wellen1981

Himoura said:


> Well I appreciate the apology but i got upset because you totally twisted my post around and tried to make it sound like I'm some crank over here doing dangerous stuff to myself and it "almost cost me dearly".  Give me a break man.
> 
> Number one.  The only reason I even landed in the ER at all is because I was in remission for 3-4 years and had gotten used to being able to drink alcohol and eat whatever I want.  I didn't realize the bacteria was just dormant and snuck back up on me.  I have had more success keeping myself in remission than anyone I have ever met or read about except the handful of lucky people who got a triple antibiotic treatment and it actually worked.
> 
> Number two.  I am not doing anything "dangerous" too myself.  Threelac and DE are extremely safe and I researched both incessantly before trying them.  I can't even find one negative post about DE.  I'm honestly just being overly cautious since there could be some really sick folks in this thread.
> 
> Number three.  Honestly I think it's your logic that's flawed.  I am glad for you that you feel like you have plenty of time to wait around for quality research but some of us don't feel like they have much time.  "Desperate", "nothing to lose" are words I would use to describe this disease when it's in full swing.  It's a nightmare.  I have been suffering with Crohns for over 10 years but was only recently diagnosed.  The medical community in general is just really behind the times.  I had a GI tell me that if I had an ulcer the only treatment option available to me would be surgery.  Really?!  I asked him if he knew who Dr Barry Marshall was and he looked puzzled and said "never heard of him".  He has been practicing for over 30 years.  He also neglected to check my biopsy for h.pylori after my endoscopy.  He said there was no need.
> 
> It's great that Dr Taylor may have figured this out.  I applaud him and his daughter but most of the medical community could care less.  They learn what they learn in school and that's it.  They don't typically dig any further because most believe they have been taught everything there is to know about their field.
> 
> So if you feel you have plenty of time to wait for this vaccine that's awesome man I'm happy for you but a lot of us don't.  The vaccine is still what... 5 yrs away?.  I really didn't think I was gonna make it much longer after last year but getting the Crohns diagnosis and finding this community has really helped me to finally put all the pieces together and make sense out of what worked and what didn't and why.  I think I got lucky with the three lac and it really kept my intestines from deteriorating, but it also prevented me from getting the Crohns diagnosis sooner since it's basically a diagnosis of exclusion or you get so sick it becomes obvious and requires surgery.


You don't have to explain yourself, again I am sorry for what I can honestly say was a very quick (read that as abrupt) post by myself that was not one of my 'better' moments of thought. 
I should have took the time to just post in a decent, productive way so as not to cause as much offence to you as I did. 
It was only when you replied that I realised my post fell short of what I was trying to say.

Believe it or not, you and I are in very similar positions time wise and also with regards to understanding how pressured we all are to find the best solutions to the conditions.

I don't think you are a quack. Far from it.


----------



## wellen1981

King of Orange said:


> I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed.
> 
> Can anyone comment on that before I have to dig out my immunology books again?
> 
> In those people however the antibiotic therapy is still a viable option.


From researching what Prof Borody had to say it appears that the only time the bacteria are vulnerable is at division stage and (i only watched the videos once) something along the lines of happening once a year or longer was mentioned on the videos... Borody states MAP is a very slow bacteria.

Here's the links, 9 parts about 10mins long each - I'm sorry I cant recall which part has the comments about division timeframes but i think it may be one of the middle vids maybe pt3-pt6?

https://www.youtube.com/watch?v=crm4pKz6X2M


HTH


----------



## Malgrave

Latetst news on Crohns MAP Vaccine:

On 26.02.2015 the Advisory Committee on Dangerous Pathogens met to review the issue of MAP in Crohn's disease for the first time since 2005. This review was requested by Jeremy Hunt (Secretary of State for Health) following a letter from Nicola Price (of the Crohn's MAP Vaccine core team), who wrote to him in November 2013 regarding this issue. Their report has just been published online and you can read it on our news page here:

http://crohnsmapvaccine.com/review-...ubsp-paratuberculosis-map-and-crohns-disease/

The original source of this document is:
https://www.gov.uk/government/groups/advisory-committee-on-dangerous-pathogens
You will find it under 'Minutes' by clicking on 'Minutes, papers and agendas'

Dr Irene Grant, commissioned to write the report, is a senior lecturer in Microbiology and food safety at Queens University Belfast. Whilst she maintains that 'it is difficult to draw firm conclusions about MAP in CD at present', she does highlight the following statement from Dr Ingrid Olsen (Norwegian MAP expert): 'Together with all the genetic susceptibility data emerging over the last decade, it is very hard to reject the hypothesis of mycobacteria being involved in the development of CD in at least a sub-cohort of patients'. Her report also identifies, specifically in regard to MAP testing, that 'further research is clearly needed'.

We are very pleased that an independent expert has endorsed this field as an important area of research. We note that the report does not make any recommendations as to what actions should be taken –hopefully that will be the next step!

We would also like to take this opportunity to thank Crohn's and Colitis UK and Rick Parfitt Jnr and The RPJ Band once again for their fantastic donation of £15,000 to support our project! More details are given on our latest newsletter which you can read here: http://us10.campaign-archive1.com/?u=438c2985e4a37f81f082c28e3&id=14ebca8107&e=418e03b635

***
IT'S TIME TO CURE CROHN'S!


----------



## irishgal

For anyone interested (who didn't already see my post in the research section) Dr. Amy Hermon-Taylor will be in Chicago on August 16th for a research symposium where she will discuss the vaccine. Coolest thing - you can meet her at a Meet and Greet afterward! Really looking forward to it. Other presenters are coming too, including Patrick McLean with a RedHill update.


----------



## irishgal

King of Orange said:


> I need to find out more about the anti-MAP treatment. My feeling is that if someone has a chronic MAP infection then anti-MAP will NOT work: because that persons immune system is not able to present the MAP proteins (antigens) correctly to the T cells, meaning that the cells containing the MAP bacteria are not killed.


King of Orange - I think I saw this question on another topic, so my apologies if I responded to you in a different thread. I'm not a microbiologist, so I can't fully say, but I believe it's the triple antibiotics which kill the MAP, not the TCells (since they had trouble with it in the first place.) What you describe is what I understand is the basic mechanism of a MAP infection due to genetic susceptibility in some people.  

I can tell you for sure that I've had Crohn's for 25 years. The classic wasting symptoms never went away.  No traditional treatment worked. In Nov. 2014 I went on AMAT as a last resort. I was in full remission in 6 weeks. Tissue that I could see was in bad shape just slowly healed. I know it doesn't work like that for everyone, but I'd certainly classify my disease as chronic, and AMAT worked miraculously for me. I was on rifampin, clarithromycin and levofloxacin, but had to drop the levo due to tendonitis. I started LDN as a compliment to AMAT a month ago.


----------



## JMC

irishgal said:


> I can tell you for sure that I've had Crohn's for 25 years. The classic wasting symptoms never went away.  No traditional treatment worked. In Nov. 2014 I went on AMAT as a last resort. I was in full remission in 6 weeks. Tissue that I could see was in bad shape just slowly healed. I know it doesn't work like that for everyone, but I'd certainly classify my disease as chronic, and AMAT worked miraculously for me. I was on rifampin, clarithromycin and levofloxacin, but had to drop the levo due to tendonitis. I started LDN as a compliment to AMAT a month ago.


That is interesting, did you have any side effects from the AMAT?  Were you tested for MAP infection before commencing treatment?  

My resection samples were tested by Prof John Hermon-Taylor using his new test and were positive for MAP, but given that I am largely in remission at the moment I have not been tempted to try AMAT due to the bad reports I have had about the side effects and failure to improve symptoms in others.


----------



## irishgal

Hi JMC - Yes, I was tested for MAPish through John Aitken's lab in NZ and was positive. I only say MAPish because he's found a Mycobacterium involved in Crohn's disease, but it may or may not be exactly MAP. From this forum and other research I've done, MAP is able to take different forms and mutate, so it may be that it's mutated in humans from the classic MAP seen on cows with Johne's.

I did have some side affects, especially the first two weeks. Horrible nausea, felt like I had the flu, metallic taste in my mouth, no energy. Some of this was kind of normal for me though since I was so sick with Crohn's when I started AMAT. Like I said, I used it as a well researched last resort for my case since I thought it would help my particular disease pattern. I had always wondered if I had an infection throughout the years since flagyl worked wonders, but nothing else did. Now though, I hardly feel any of the side effects. Certainly nothing even as close to as bad as my Crohn's! Still occasionally nauseous, but very light.


----------



## rollinstone

irishgal said:


> Hi JMC - Yes, I was tested for MAPish through John Aitken's lab in NZ and was positive. I only say MAPish because he's found a Mycobacterium involved in Crohn's disease, but it may or may not be exactly MAP. From this forum and other research I've done, MAP is able to take different forms and mutate, so it may be that it's mutated in humans from the classic MAP seen on cows with Johne's.
> 
> I did have some side affects, especially the first two weeks. Horrible nausea, felt like I had the flu, metallic taste in my mouth, no energy. Some of this was kind of normal for me though since I was so sick with Crohn's when I started AMAT. Like I said, I used it as a well researched last resort for my case since I thought it would help my particular disease pattern. I had always wondered if I had an infection throughout the years since flagyl worked wonders, but nothing else did. Now though, I hardly feel any of the side effects. Certainly nothing even as close to as bad as my Crohn's! Still occasionally nauseous, but very light.


Hey, just wondering if your prescribing doctor has only concerns that you've dropped the one antibiotic that caused tendinitis, is it still expected to work as effectively at reducing resistance?


----------



## irishgal

I have the same concerns that it won't work as effectively without the levo, especially since my case has broken through every treatment I've tried. Now that I feel good, I never want to go back! Still, numb hands and 90 year old knees are not good. I talked to Dr. Chamberlin about this and he said that Rifampin and clarithromycin are still good and have been shown to be effective, plus I added LDN to give my innate immune system a boost. My prescribing doc wants no part of levo! Kind of can't blame her since I tried to add it back in and within three days my knees and hands were bad again. It clearly doesn't work for me. 

I'm in the process of trying to legally obtain clofazimine. I need to look at off label use in the US and see if I can make an application to Novartis since all of the other treatments have failed.


----------



## wildbill_52280

irishgal said:


> King of Orange - I think I saw this question on another topic, so my apologies if I responded to you in a different thread. I'm not a microbiologist, so I can't fully say, but I believe it's the triple antibiotics which kill the MAP, not the TCells (since they had trouble with it in the first place.) What you describe is what I understand is the basic mechanism of a MAP infection due to genetic susceptibility in some people.
> 
> I can tell you for sure that I've had Crohn's for 25 years. The classic wasting symptoms never went away.  No traditional treatment worked. In Nov. 2014 I went on AMAT as a last resort. I was in full remission in 6 weeks. Tissue that I could see was in bad shape just slowly healed. I know it doesn't work like that for everyone, but I'd certainly classify my disease as chronic, and AMAT worked miraculously for me. I was on rifampin, clarithromycin and levofloxacin, but had to drop the levo due to tendonitis. I started LDN as a compliment to AMAT a month ago.


irishgal, I also have been underweight with "wasting" since developing crohns. I did a fecal transplant 9 months ago and gained 10 pounds in 10 weeks without any change in caloric intake , it was amazing. Now 
I'm a normal weight for the first time in about 7 years. 

I believe a round of antibiotics caused my crohn's disease, much research supports this idea now. whiel the Fecal transplant wasnt enough to restore bacteria that regulate inflammation, i did restore bacteria that seem to help digest my food and maintain my weight. the firmicutes seem to be involved in weight gain as well as inflammation, firmicutes is a broad classification of other types of bacteria but they are generall decreased or damaged in crohn's, while in obesity firmicutes are too numerous because the baceroides are too low and allow for greater weight gain. so it may make sense that crohn's disease patients have issues gaining weight, but this is a mechanism that is beyond malnutrition that may not be well understood yet by most scientists.


----------



## irishgal

Thanks for this info Wildbill! Really fascinating. I'll have to research more. I had heard about how well fecal transplants work, but it was more of a second choice for me if AMAT failed due to availability in my area. I'm kind of in a GI dead area, and lucky to have my integrative health doc to work with. 

I actually think the combo of a bad flu plus possibly being on antibiotics during that is what caused my first flare also. Plus bad genetics. I was a kid, so my mom can't remember if the doc put me on antibiotics during the flu that never went away, but my guess is that I was, which messed up my gut bacteria, which allowed bad bacteria to take over, thus kicking off my Crohn's disease and years of leaky gut. Fecal transplant is high on my list is AMAT fails. 

Glad you are doing better. Isn't amazing to feel like a human again and not be so tired all the time! I know just how you felt. Really takes over your life and each day is a challenge to summon enough evergy just to keep on living. I always felt like if I didn't do the things I was supposed to do and laid on the couch instead, that the disease was winning. I guess that made me try even harder, but it's great to see what I've accomplished in the 8 months that I've been better! Also, sad to see what I could have done had I been healthy for 25 years, but I can't live life in regret. I hope you continue to feel well and the next few years will be critical for this type of research. We just need to get these projects funded!


----------



## wildbill_52280

irishgal said:


> Thanks for this info Wildbill! Really fascinating. I'll have to research more. I had heard about how well fecal transplants work, but it was more of a second choice for me if AMAT failed due to availability in my area. I'm kind of in a GI dead area, and lucky to have my integrative health doc to work with.
> 
> I actually think the combo of a bad flu plus possibly being on antibiotics during that is what caused my first flare also. Plus bad genetics. I was a kid, so my mom can't remember if the doc put me on antibiotics during the flu that never went away, but my guess is that I was, which messed up my gut bacteria, which allowed bad bacteria to take over, thus kicking off my Crohn's disease and years of leaky gut. Fecal transplant is high on my list is AMAT fails.
> 
> Glad you are doing better. Isn't amazing to feel like a human again and not be so tired all the time! I know just how you felt. Really takes over your life and each day is a challenge to summon enough evergy just to keep on living. I always felt like if I didn't do the things I was supposed to do and laid on the couch instead, that the disease was winning. I guess that made me try even harder, but it's great to see what I've accomplished in the 8 months that I've been better! Also, sad to see what I could have done had I been healthy for 25 years, but I can't live life in regret. I hope you continue to feel well and the next few years will be critical for this type of research. We just need to get these projects funded!


I'm aware of the role MAP may play in crohn's, its becoming obvious targeting the types of bacteria with antibiotics could have a good effect. Its still my belief that restoring the missing bacteria in IBD with a fecal transplant will provide a lasting cure, as some studies have suggested. See the fecal transplant post for more info. Restoring the good bacteria that have been damaged creates something called colonization resistance, which opposes any pathogens that we encounter. IT's a similar concept as to why fecal transplants are so effective at curing antibiotic resistant/refractory c. difficile infection, which is the only condition the FDA has approved to treat with a Fecal transplant.


----------



## Himoura

irishgal said:


> I have the same concerns that it won't work as effectively without the levo, especially since my case has broken through every treatment I've tried. Now that I feel good, I never want to go back! Still, numb hands and 90 year old knees are not good. I talked to Dr. Chamberlin about this and he said that Rifampin and clarithromycin are still good and have been shown to be effective, plus I added LDN to give my innate immune system a boost. My prescribing doc wants no part of levo! Kind of can't blame her since I tried to add it back in and within three days my knees and hands were bad again. It clearly doesn't work for me.
> 
> I'm in the process of trying to legally obtain clofazimine. I need to look at off label use in the US and see if I can make an application to Novartis since all of the other treatments have failed.


So crazy that you mentioned numb hands and 90 year old knees.  These are two of my worst symptoms and I have them in exactly the way you described.

I don't want to be negative and apologize to everyone for doing so but as hopeful as I am for Dr Herman's vaccine I saw a news story about it when he first developed it.  Words can't really convey how depressed I became when I saw the date of the article was 2001.  They have had this vaccine for 15 years now and it's still a good 5 years away unless you can get into the human trials.

I have accepted the fact that I have to find an alternate method to stay in remission.

I think that we as a group need to promote awareness of this disease.  It has recently occurred to me that most people in developed nations could have this or similar bacteria and they may simply not be showing symptoms.  Anything from a post nasal drip that won't go away to common allergies or even issues with depression and drug interactions can all be symptoms.  It's time for us to accept the reality that the reason this vaccine is still unavailable after so many years is because of the massive profits this could cut into of drugs like Humira that are being used to treat all sorts of inflammation that are more likely than not just symptoms of mycobacterial infections.  Or even drugs to treat simple allergies.  What about heartburn?  Think of how much money is made off of PPI's alone.

And Why just maps?  There could be many of these bacteria and the industries that are making trillions off of drugs to treat such a wide range of symptoms are going to spend endlessly to make sure this vaccine never sees an actual trial.  If this vaccine is successful it opens the door to vaccines for a whole host of bacteria that could be silently affecting the populations of developed nations without their knowledge.  This truly is a plague but just like with tuberculosis... some people have it and simply never get sick or than there are those who never get it at all.

And what determines Crohn's?  I think it's simply a matter of the condition of your intestinal flora.  The average person has about 5 lbs of bacteria in their GI track.  Once the beneficial bacteria dies off to the point it can no longer keep a maps type infection in check that's when you start to see the Crohn's pathology.  And with such a small segment of the population having full blown Crohn's there isn't exactly a public outcry to address the disease.  Most people could have this infection and simply never know it because a healthy balance of gut flora keeps the bad bacteria from getting out of hand...


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## irishgal

Hi Himoura. Yes - the knees and hands really bothered me, though I think the conditioned worsened severely due to the levofloxicin. I had had issues with Crohn's related arthritis for about two years before AMAT, and the hands I just chalked up to early carpal tunnel due to risk factors. Turns out it was primarily caused by levo! I'm glad that it's gone away, but sad that I can't do the full triple cocktail of AMAT to give myself the best chance at long term remission.

My take on the vaccine is kind of along the lines of my take on life - I hope it works, but I'll have plans for while I'm waiting. Never good pin all hope on one thing that hasn't been proven in humans. I agree that the reason why all these projects haven't been funded is big pharma. They control all the research. dollars. If the vaccine or AMAT work, they stand to lose billions. The docs have finally gotten tired of waiting for the medical community to help them and have taken it to the people! See the August symposium www.thecrohnsinfection.org

The really sad thing is that Crohn's doesn't discriminate between rich, poor, people with good medical insurance who can afford the biologics or those who can't. There's a whole group of Crohn's patients who suffer because they can't afford the more expensive pharmaceuticals! For those people, you'd think that the docs would at least read up on AMAT, fecal matter transplant or any of these other treatments and try to offer those at a low cost. I was on all the expensive stuff, and what finally worked was the cheapest treatment out there - AMAT! Maybe it would work for other people!

I also think you're right that they've just barely scratched the surface of microbiome research. MAP is just one pathogen they've found so far, but I'm guessing they'll find a lot more Check out this new article about antibiotic use early in life! http://medicalxpress.com/news/2015-06-courses-antibiotics-profoundly-children.html

I do think there's a genentic predisposition for Crohn's at least in some people, and something like antibiotics could throw off the gut flora enough for an opportunistic pathogen (like MAP) to trigger the full out disease. I think this is my case. I have both genetic history plus flu trigger with early life antibiotic use. Hopefully some of these projects will get funded and we'll start learning so much more! Hope you're feeling well.


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## Himoura

It's important to understand why some of these medications seem to work in the short term but not in the long term.  To me it's a gamble.  You are basically hoping that an antibiotic can eliminate the bacteria that is causing your issues but at the same time avoid the good bacteria that is helping your body to defend itself.  Their in lies the heart of the problem.  Antibiotics are indiscriminate in that they do not eliminate one but all types of bacteria some more effectively than others.  So you are basically hoping whatever antibiotic you take kills the bad and leaves the good.  I believe in the end though that even if you experience temporary relief it could be because the harmful bacteria has simply gone dormant and all you have actually done is weaken your good flora.  Once the good is gone you are totally screwed.

I definitely believe my condition was caused by over prescription of antibiotics as a child.  I had tonsillitis and for whatever reason medical doctors have moved away from removing tonsils unless it becomes life threatening.  This meant me being sick several times a year and having to get rounds of antibiotics every year as a kid.  It eventually killed off too much of my good flora.

I'm hesitant to try AMAT because I have achieved the same results with diet, exercise and strong probiotics.

I am going to experiment with different probiotic strains to see if I can hit the one that my body is deficient in.  If I can have some success than maybe fleet enemas of probiotic could be a cure.

I am really happy for wildbill but I am a total germaphobe and the idea of FMT is something I will only try as an absolute last resort.  Medical science needs to get up to speed and start identifying and culturing some of the more exotic strains of good bacteria so we can just take the bacteria and not have to entertain the idea of FMT.


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## irishgal

Himoura, I couldn't agree more. Had I not been on deaths door with no treatment options, I may have tried some smaller scale things first. Before AMAT, I tried the traditional Crohn's meds and when those failed, I did FODMAP, yoga, heavy probiotics, cut out sugar, gluten, dairy and started some essential oils! I'd consider myself reasonably "crunchy" so broad spectrum antibiotics were a little daunting to me. All of thise other lifestyle things did work to various extents, and I still do a lot of them. I'm still taking tons of probiotics and supplements to try to combat the microbiome die off. 

Actually, antibiotics are not indiscriminate and do work on different classes of bacteria. These are pretty broad spectrum, but they are targeting mycobacteria, which are nearly impossibly to kill since they go to a mutated or persistor state. Pulsing would be a bad idea in my opinion, and I'm staying on them as long as they keep working, in order to combat resistance. Still, they won't kill your microbiome, but certainly can alter the composition. I also think my Crohn's was exacerbated by antibiotics as a kid. My parents say I had tons of ear infections.

The problem I run into is which risk is worse? Risk of untreated, rampant Crohn's, or killing off a lot of good bacteria. My Crohn's was so bad that I was wasting from the inside out, so I took the risk with AMAT. I wish the diet/lifestyle route had worked for me, but after abiut a year it stopped working and my Crohn's returned with a vengeance. Plus, I have a skin manifestation, and that needed to be treated ASAP. I definitely worry about long term, but will deal with each day as it comes and have some back up plans. 

FMT would certainly be a backup, but my reaction was much like yours! Still, I could probably do it if it was that or die. Hoping for a FMT pill someday! Love forums like this one so if I ever get sick again, I can pick the collective brain. 

Peace and good health to you!


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## Himoura

ok I really cannot believe I am posting this and I am trying to be objective and not get too excited but my happy is back.  for anyone that has suffered with Crohn's for a long time you know exactly what I am talking about.  this disease takes everything from you and leaves you with no energy and horribly depressed.

I think I may have figured out how to cure this.  really cannot believe I am saying this and I feel like a complete idiot for not trying this sooner but I am very averse to putting anything up my bum.  maybe I am being extremely immature but things should only ever exit and never enter.  so anyway.

I took my probiotic fivelac and bought some fleets enema's and dumped the saline solution out of the enema.  I then filled the enema up with distilled water and a packet of fivelac.  I did the deed right before I went to bed and slept all night.  the water absorbs into the colon and the probiotic is able to begin to colonize the large intestine.  I still have blocks under my bed from before I had my GB removed and had horrible heartburn.  I have been sleeping backwards in hopes gravity would carry the solution further up my colon.  no idea if that helped or not.

my hand inflammation is gone.  two days and its totally gone.  I was going into remission anyway from diet and probiotic but this is literally an almost over night thing which is shocking.  my other really bad symptom is the "wasting away" that bill was talking about.  its brutal.  I am normally a 200 lbs. guy and I have wasted away to a meager 135lbs.  I look like a cancer patient.  that usually gets better over time but its been a lot harder for me to get into remission this last time.

so anyway I don't want to give false hope and I will continue to monitor and report back to this thread but if my weight dramatically increases I think this is it.  its not technically an "all out cure" but if you can reinstate your bodies natural defenses than we could be like the people that have MAPs and don't know it because you don't have symptoms.  also this could really help to prune the bacteria back far enough so that if you ever did get the vaccine your chances of killing MAPs would be better?  idk.. that's just pure speculation.

I think FMT is very valid but idk... the idea of putting someone else's poo up my bum is insane and I don't think I could do it.

the best part about this is there is no risk.  completely safe drug free solution.


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## Himoura

I would also add that part of the reason it has been harder for me to get into remission is because I keep cheating on my diet.  starbucks is one of my biggest temptations and when I drink it I pay dearly.  I had a cup of coffee yesterday and I feel completely fine.  no adverse effects.  I don't want to push the envelope but if this works I should be able to start eating and drinking normally with no ill effects.


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## InstantCoffee

I don't want to hijack this too much but I'm starting to be of the belief that MAP, though implicated in Crohn's, is not a causative factor, but moreso a marker of dysbiosis severity. 

It's possible that when left unmanaged that MAP can cause symptoms, as well as the other bacteria likely to be running rampant in the gut of those with IBD and the dysbiosis it causes.

AMAP therapy would also be killing many other pathogenic bacteria, so its blanket approach would account for the improvement. I'm curious if the vaccine will have the same effectiveness. If it only targets MAP specifically or if it may be effective on multiple similar bacteria.

If it only targets MAP and shows improvement, we'll have evidence that MAP is a primary factor in Crohn's symptoms. If it's a blanket treatment like AMAP antibiotic therapy however it's not quite as conclusive.

MAP has been shown to grow based on specific dysbiosis imbalances and dietary conditions. It can also be reduced in diets higher in fibers that promote growth of healthy gut flora. 

If you kill the MAP, you still need to restore normal bacteria balance to protect against it and other invasive bacteria. If the therapy to kill MAP wipes out the protective bacteria that prevent regrowth of MAP and other bacteria, you're trapped on that treatment to keep things in check.

There's a really interesting, older post by a researcher here:
Post #29
https://www.crohnsforum.com/showthread.php?t=36726


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## Himoura

I agree with pretty much everything you are saying coffee.  I think I can also provide a very simple answer for the sacrin issue.  It's just another fuel for MAPs.  Oh and Coffee be careful with Humira.  It has a specific warning not to take it if you have or have been exposed to TB... Well... guess what family MAPs is also a part of?  Hmm...

I really do believe that Dr Taylor has the cure for this with his vaccine.  He has proven it with cattle and mice.  When given the vaccine the symptoms subside.  It is important though like you said to restore the beneficial flora to make sure you aren't at risk for other pathogens though.  But the MAPs bacteria seems to be the main culprit for the very extensive and life altering symptoms displayed by Crohn's patients and people with chronic fatigue.  I think in time medical science will concede that Dr Taylor is not only correct but that MAPs is responsible for much more than just Crohn's.  Could be a whole laundry list of things from regular allergies to IBS or even heartburn.

I used to have a job putting window film on houses and office buildings.  I always had problems with inflammation but it was never full blown like it has been since that job.  I had to breathe a soap chemical every day to put the film on the glass.  I really believe this substance fed the MAPs or whatever I have I to such a huge out of control condition.  It's the same with sugar.  All of us know that if you eat sugar you get really sick.  Why?  It is fuel for the bacteria and when your beneficial flora can no longer keep it contained it spreads like a brush fire out of control.  The sacrin is nothing more than a very desirable fuel source.

That's all pure speculation but it's what I have observed with my own case.  Take it with a grain of salt.

So a update on my progress.  I had a sandwich and another cup of coffee!!!!!!  I feel fine.  I really hope I can Start gaining my weight back.  It's crazy to feel this good I really hope this can work for other people.

I'm praying for you guys.  No one deserves to be miserable with this disease I really hope this works for any, some or all of you.


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## irishgal

Coffee and Himoura, you both have given me such interesting ideas! Coffee - I have to respectfully disagree that MAP only marks dysbiosis, but I'll revisit this on Aug 17th. John Aitken has some big stuff to reveal at the Chicago symposium, and my guess is that it relates to MAPs role in Crohns. Also, not exactly sure what humans have is MAP, but maybe some relative or mutation of MAP. John teases his talk at the symposium here:
http://thecrohnsinfection.org/john-aitken-reality/

Otherwise Coffee, I do worry about general issues with broad spectrum antibiotics messing up my gut flora irrevocably, which is why I'm so excited about Himoura's post! 

Himoura - you've basically achieved a DIY FMT by using a mix of probiotics that worked for you instead of fecal matter. AWESOME!!!! I think the only reason people reort to full out FMT is because the beneficial bacteria contained in fecal matter are not available without the fecal portion. Clearly, I think anyone would be happy to only have the beneficial bacterial strains without the other ickyness. I've heard Dr. Borody is working on this. So glad you are feeling well!!!

I know what you mean about coffee. It made me so sick that I finally had to give it up and switch to green tea. I liked the tea, but it wasn't coffee. When I was sure I had established a healthy remission, I cautiously tried a little coffee, and was fine! I now max out a two cups a day to baby my digestive system a little, but it's wonderful to feel like a normal human again. I hope your success continues! You may try to add Saccromyces Bouladii to your mix. It's been shown to help Crohn's patients since it helps the healthy bacteria grow. Lacto Reuterii is another I take with the same effect. Klaire labs has a reliable supply.


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## Himoura

Ya the FMT would probably be the best because I have heard there are millions of different flora but this is easy and safe and doesn't freak me the hell out.  Maybe if I had a child I would consider it but this is working really well.

I also had an interesting symptom that developed after many years.  I started getting what felt like a lump in my upper GI tract and I started burping all the time.  Even after a glass of water.  That too is almost gone now.

Idk this is just working really well.  My inflammation is almost completely gone and it's not flaring up after eating trigger foods which is a huge improvement!!


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## InstantCoffee

The problem I see is that while MAP is prevalent and implicated in crohn's, so are many other pathogens like AIEC, epstein-barr, klebsiella and others.

It seems more likely to me that MAP is a result of the dysbiosis than the cause. 

Are there any reports of people coming off AMAP therapy and maintaining remission? 

If it's a matter of just killing pathogens, then once it's dead, it's dead, although 100% killing it may take a long time.

If the MAP and other bacteria are simply the result of a loss of protective probiotics, then AMAP therapy is another bandaid similar to biologics, albeit more effective. The problem is it will disrupt your natural bacteria and make it harder to get back to a normal biome without FMT. 

That's why I'd be hesitant to try it. Unless we can prove MAP is the cause - not the effect of Crohn's, I don't want to be bound to antibiotic use for life.


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## rollinstone

InstantCoffee said:


> The problem I see is that while MAP is prevalent and implicated in crohn's, so are many other pathogens like AIEC, epstein-barr, klebsiella and others.
> 
> It seems more likely to me that MAP is a result of the dysbiosis than the cause.
> 
> Are there any reports of people coming off AMAP therapy and maintaining remission?
> 
> If it's a matter of just killing pathogens, then once it's dead, it's dead, although 100% killing it may take a long time.
> 
> If the MAP and other bacteria are simply the result of a loss of protective probiotics, then AMAP therapy is another bandaid similar to biologics, albeit more effective. The problem is it will disrupt your natural bacteria and make it harder to get back to a normal biome without FMT.
> 
> That's why I'd be hesitant to try it. Unless we can prove MAP is the cause - not the effect of Crohn's, I don't want to be bound to antibiotic use for life.


Dr Judith Lipton has maintained remission after ceasing anti map therapy, there are a few others, though you'll have to do some research to find their names, they don't use this forum as they've left their cd troubles behind. 

Also to touch base on AIEC, the problem is that crohns is an umbrella term for what has a multitude of causes, all one needs for a diagnosis of crohns is idiopathic patches of inflammation somewhere in the intestine, both map and AIEC can cause this. The best gi's in the field are all aware that crohns itself is an umbrella term for what is most likely a chronic infection, with evidence suggesting two main culprits - Map, and AIEC.


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## Himoura

*Update*

I feel like a million bucks.  It's. been years since I felt anything g close to this good.  I just ate a sub sandwich and washed it down with chocolate milk.  Am I pushing the envelope?  Yes.  Because I want to prove once and for all this can be cured.  I have gone back to a normal diet now and even drinking chocolate milk pretty regularly.

My bowel movements actually look normal and that is a first for me in a decade.  The only symptom I never really could get a handle on was a sensitivity to smells.  If I can get that to go away I think this clinches it.

This is bitter sweet for me though.  I lost my music, the love of my life, 10 years of my life, jobs, friends.  I basically lost it all.  I can't tell you how many times over the last 5 or 6 years of taking Threelac I thought about doing this but didn't.  To think that all that time I had the cure right in front of me.  I feel like a failure.

Whatever.  That's life.  You pick yourself up and salvage what's left and keep moving forward.  You never give up and you never give in.

I would encourage anyone suffering with this horrible disease to give this a shot.  And if this works for a lot of people I think we can conclude that good people like dr Taylor and his daughter are a rarity in an institution that has lost all focus and is hell bent on draining us of every dime.

To hell with my GI and every worthless doctor I have seen up to this point.  I forge my own path in life from this moment forward.

Good luck to all of you.


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## sid

Its really nice to see you getting the relief finally. I hope and pray that this is actually a cure and not just a temporary remission. Keep us updated buddy.


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## irishgal

Coffee - there are a bunch of people who have come off of AMAT (or do a lower maintenance dose) who have achieved long term remission. I believe Dr. Borody considers 5 of them cured, including Dr. Lipton. There's a cool article written about this at beststory.ca. It costs 40 cents, but it's well worth it! The hard thing with MAP is that e people who are susceptible to it have genetic mutations, and that's not being fixed any time soon! Since MAP is in our environment anyway, it's nearly impossible to stop exposure at some points. So for those few genetically susceptible people, they'll probably end of with Crohn's anyway. Plus, once you contain it with AMAT, it mutates and forms a persistor state. That makes it nealy impossible, if actually impossible, to 100% kill it. The best we can do now is kill most of it to the point where our immune systems can handle it more effectively. I've added LDN in an attempt to make my immune system work more efficiently. It's a hard problem to solve since the organism is so hearty. I also agree that Crohn's is an umbrella term with multiple causes. Mine seems to be MAP.

Himoura, so glad you're feeling better! Understand your heartbreak for missing so many years and what you've given up being sick. I've done that too, and wonder what path my life would have taken without this disease. Keep fighting for health and moving forward. I enjoy every day I'm not sick! Coincidentally, I also am very sensitive to scent. Anything man made is overwhelming. I can only tolerate essential oils. Wonder is that's a side effect of gut dysbiosis! My family thinks I'm nuts. My high schooler hates that I can smell the girls' perfume on his clothes! Haha. As I'm getting better I'm more able to tolerate scent, but I still notice it at much lower levels than anyone else. I stripped all commercial scent out of my house when I was pregnant, and I thought it was pregnancy hormones making me extra sensitive, but it never went away! It coincides with my disease getting worse though.


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## Himoura

*Final Update*

this will probably be my last update and I want to be as honest as I can about what I have found.  I really do think this is it but there have been some bumps.

I feel amazing.  my body is going back to normal and I am hitting the gym with energy I haven't had in years.  its truly a transformational experience.  my personality is coming back and I feel funny again and full of life.  I feel like me again.

now for the bumps.  eating jersey mikes sandwich's and downing bottles of chocolate milk probably wasn't the greatest idea I have ever had but it wasn't terrible either.  my stomach would get a little numb at first and some of those old feelings or symptoms would feel like they were going to come back but by that night I would feel ok and the next morning back to feeling like a million bucks.  its crazy.  I could never do this before.  everyone who has this knows its like a downward spiral and you keep going down till you completely hit rock bottom.  I even started to get a little asthma from pigging out but next day.. gone.  its like my colon is being recolonized and the bad bacteria just cant keep up anymore.  candida sufferers encourage each other to eat normally so the bad bacteria comes out too feed making it vulnerable to the probiotic.  I would be careful with this notion but there could be some truth to it.  now I am to a point where I barely get any symptoms at all.

so anyway here is what I have learned.  people who think they have candida take threelac but I think its bunk now.  I think its all bad bacteria getting out of control due to antibiotics.  threelac can cause a person to have pretty intense die off symptoms which is good but be careful and start out with like one packet and work your way up.  don't over do it.  also wait on the regular food.  allow your body time to heal up and the threelac to recolonize your gi track.   than you can eat whatever you want.  I was anxious to prove something and to gain weight because I was down so low and looking terrible barely staying in remission but not looking better.  

I feel great though now and really think this is what we need to keep us going until we can get the vaccine.  if you can recolonize your GI tract than you have essentially reconstituted your body's natural defense against the bad bacteria.  they say 70% of your immune system is in your GI tract.  in this day and age we rely way to heavily on our counts to keep us from getting sick but that's only a small part of the system.  the ecology of your gut is what does most of the work and if that gets out of whack you become susceptible to all kinds of diseases and ailments.

I truly believe now that a lot of people who suffer from any type of inflammation, heartburn, headaches, allergies, chronic illness, fatigue and a multitude of other ailments can find relief through this method.  the possibilities are endless.


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## JMC

InstantCoffee said:


> The problem I see is that while MAP is prevalent and implicated in crohn's, so are many other pathogens like AIEC, epstein-barr, klebsiella and others.


I think if you go to Pubmed and search, you will discover a huge difference between MAP and epstein-barr, klebsiella and others.  The theory that MAP is the cause of Crohn's is _coherent_, well researched and uniquely amongst those other pathogens has _unquestionably_ been proven to cause inflammatory bowel disease in many other species.  I think there is good evidence some Crohn's may be caused by AIEC, let's see how the Qu Biologics trial progresses.



InstantCoffee said:


> It seems more likely to me that MAP is a result of the dysbiosis than the cause.


I think that is purely speculation as I have never seen any credible research to prove that.



InstantCoffee said:


> If the MAP and other bacteria are simply the result of a loss of protective probiotics, then AMAP therapy is another bandaid similar to biologics, albeit more effective.


I think to some degree that is true.  You can use antibiotics to try to kill MAP, but if you have a genetic weakness in your innate immune system which means you are not able to clear it naturally and it is prevalent in the environment (which it is) you will no doubt become reinfected.  This is why a vaccine is a much more interesting proposition.


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## irishgal

Hi JMC - Don't know if you've ever dealt with John Aitken, but I sent him my sample to culture for MAPish (or red spots) as he is one of the few worldwide experts on this. I've kept in contact with him by email since then, and gotten to know him better, I know he's cautious to release anything without being 100% sure and that he's been working to ideantify the mechanism that these mycobacteria red spots (maybe MAP or a relative) play in Crohn's disease. He just posted this to the site, and the last paragraph gave me chills. I think he's got something big!

http://thecrohnsinfection.org/john-aitken-memory/

He told me this week that he's been talking with Amy, so hopefully the two of them can work together and he can possibly provide info to help with the vaccine about the organism. Glad these docs are all coming together to try to settle this debate once and for all!

I also agree that the AMAT may be a Band aid since I've been told by these docs that Crohn's is at it's core an issue of the innate immune system which lets these mycobacteria through the defenses. They're not sure if they can ever totally kill 100% of the organism with AMAT, but it certainly knocks it down to a manageable level. I've been told that a combo of both AMAT and an immune modulator may be the key, and that's what they're worki on now. The vaccine may fit in there as a prevention and treatment tool also. How I wish I could jump 5 years into the future to see where it all would shake out!

Himoura - you rock. So glad you're feeling better! Virtual high five!! Will keep your treatment in mind if mine fails.


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## InstantCoffee

JMC said:


> I think if you go to Pubmed and search, you will discover a huge difference between MAP and epstein-barr, klebsiella and others.  The theory that MAP is the cause of Crohn's is _coherent_, well researched and uniquely amongst those other pathogens has _unquestionably_ been proven to cause inflammatory bowel disease in many other species.  I think there is good evidence some Crohn's may be caused by AIEC, let's see how the Qu Biologics trial progresses.
> 
> 
> 
> I think that is purely speculation as I have never seen any credible research to prove that.
> 
> 
> 
> I think to some degree that is true.  You can use antibiotics to try to kill MAP, but if you have a genetic weakness in your innate immune system which means you are not able to clear it naturally and it is prevalent in the environment (which it is) you will no doubt become reinfected.  This is why a vaccine is a much more interesting proposition.


There is some conflicting evidence. Like the fact that MAP is easily cultured from animals with Johne's but hard to culture from Crohn's patients. Map typically remains active in the terminal ileum but many Crohn's patients see a migration from the ileum to the colon over time.


----------



## rollinstone

InstantCoffee said:


> There is some conflicting evidence. Like the fact that MAP is easily cultured from animals with Johne's but hard to culture from Crohn's patients. Map typically remains active in the terminal ileum but many Crohn's patients see a migration from the ileum to the colon over time.


You'll always find arguments for and against but at the end of the day koch's postulates (the scientific criteria required to prove causation) has been fulfilled for MAP, where by they took the bacteria from a human sample and infected an animal with it (I can't remember what animal) but the animal developed "johnes"... What's tricky though is that map has been found in healthy controls as well as people with cd and also uc... I think the rhb104 trial is going to answer a lot of questions when the results eventually come in.


----------



## JMC

InstantCoffee said:


> There is some conflicting evidence. Like the fact that MAP is easily cultured from animals with Johne's but hard to culture from Crohn's patients.


I think that has been explained though (taken from the FAQs on the Crohn's MAP Vaccine website):

"Again this comes down to the fact that Mycobacterium avium subspecies paratuberculosis (MAP) exists in 2 forms: with a capsule (the most common form in animals) and without a capsule (this form occurs universally in humans but can occur in some animals as well). The capsule stains bright red... so it is barn-door easy to see under an ordinary microscopy with ordinary procedures. Once MAP loses its capsule it becomes invisible; you can't see it with ordinary staining procedures, it is very hard to get it to grow in culture in the lab and when it does grow it can take up to 18 weeks, even with the best modern methods. You can detect it by PCR i.e. by the presence of its DNA... but to do that, you have to crack open the bug to release the DNA. The form of MAP in humans is very small and very tough so standard procedures for releasing bacterial DNA don't work; special measures are required. Research groups who haven't taken heed of this in the past have found negative results, leading to conflicting data in the literature and clouding understanding amongst the medical community."



InstantCoffee said:


> Map typically remains active in the terminal ileum but many Crohn's patients see a migration from the ileum to the colon over time.


Do they?  I have never heard that before.


----------



## JMC

rollinstone said:


> What's tricky though is that map has been found in healthy controls as well as people with cd and also uc...


That is to be expected, if you look at other mycobacteria such as tuberculosis, you get a lot of people who are infected but asymptomatic.


----------



## Lady Organic

I got a question for those who believe MAp is the cause of crohns. How do you explain that there has been no case of Jones'disease in Swenden in the last 30 years, but that the incidence of CD has increased in this country? wouldnt animals still suffer from it too?


----------



## rollinstone

Lady Organic said:


> I got a question for those who believe MAp is the cause of crohns. How do you explain that there has been no case of Jones'disease in Swenden in the last 30 years, but that the incidence of CD has increased in this country? wouldnt animals still suffer from it too?


Does Sweden get its beef and milk from within its own borders, probably not entirely, as its very cold for a lot of the year and therefore probably doesn't make for the most ideal farming all year round, which means they could rely on importation, which in turn means there could be map infected products entering the food chain.


----------



## Lady Organic

thanks I understand what you mean. 

do you know what is the general tendency incidence of MAP infections in ruminants around the world? is it increasing or decreasing?


----------



## JMC

Lady Organic said:


> I got a question for those who believe MAp is the cause of crohns. How do you explain that there has been no case of Jones'disease in Swenden in the last 30 years, but that the incidence of CD has increased in this country? wouldnt animals still suffer from it too?


To be able to properly answer that, you would need to know the mechanism by which people are commonly infected with MAP.  Is it through milk, through drinking water, aerosols from shower water, eating beef or some other way like baby formula.  At the moment, we cannot answer that question, but I agree it is an interesting point.


----------



## Himoura

irishgal said:


> Hi JMC - Don't know if you've ever dealt with John Aitken, but I sent him my sample to culture for MAPish (or red spots) as he is one of the few worldwide experts on this. I've kept in contact with him by email since then, and gotten to know him better, I know he's cautious to release anything without being 100% sure and that he's been working to ideantify the mechanism that these mycobacteria red spots (maybe MAP or a relative) play in Crohn's disease. He just posted this to the site, and the last paragraph gave me chills. I think he's got something big!
> 
> http://thecrohnsinfection.org/john-aitken-memory/
> 
> He told me this week that he's been talking with Amy, so hopefully the two of them can work together and he can possibly provide info to help with the vaccine about the organism. Glad these docs are all coming together to try to settle this debate once and for all!
> 
> I also agree that the AMAT may be a Band aid since I've been told by these docs that Crohn's is at it's core an issue of the innate immune system which lets these mycobacteria through the defenses. They're not sure if they can ever totally kill 100% of the organism with AMAT, but it certainly knocks it down to a manageable level. I've been told that a combo of both AMAT and an immune modulator may be the key, and that's what they're worki on now. The vaccine may fit in there as a prevention and treatment tool also. How I wish I could jump 5 years into the future to see where it all would shake out!
> 
> Himoura - you rock. So glad you're feeling better! Virtual high five!! Will keep your treatment in mind if mine fails.


you really should.  I have almost no symptoms now.  I ran 3 miles today and my knees don't even hurt from running anymore.  I am gaining weight.  i haven't been able to run like this in 10 years and gaining weight is a miracle.  haven't been able to gain weight since i went out of remission 3 years ago.


----------



## irishgal

Himoura - SOOOOOO glad you are well! I haven't had that same experience with my healing as my bowels went back to normal, but I know what you mean about feeling like a regular human being again! Maybe someone else will have those same symptoms and this will help them. Crohn's is such an individual disease, that all the stories of what works are helpful. Thanks for all of the info and sharing your story. Hope you continue in many years of remission and good health!


----------



## xeridea

Researchers at Michigan State University have shown that ethoxzolamide, a compound used to treat glaucoma, can turn off the tuberculosis bacterium's ability to invade the immune system. This in turn may help shorten the duration of antibiotic treatment.

If TB and MAP share a similar defense mechanism against the immune system, then this drug may have applications in ABX treatment of MAP, such as Redhill's RHB-104.


----------



## irishgal

Cool xeridea! I'll have to check that out.


----------



## Malgrave

crohnsmapvaccine.com/an-update-from-the-lab-4th-august-2015/


----------



## irishgal

For anyone who is interested, Dr. Amy Hermon-Taylor's presentation from Chicago about their new MAP diagnostic is now online:

http://thecrohnsinfection.org/symposium-information/


----------



## sir.clausin

Thanks irishgirl


----------



## rollinstone

Anyone have an update on how fundraising is going? I couldn't seem to find it on their website...


----------



## irishgal

rollingstone - fundraising for the MAP vaccine or the fundraising on the Chicago symposium site? if it's the symposium site, it's in the infancy stages and being put in place now. We're redirecting any donors to the presenters websites until some type of crowd funding is put in place. I think the MAP vaccine just hit one of their targets and is ready to start trials on the diagnostic test.


----------



## JMC

It's a great talk, well worth watching
[youtube]mV9Jfytuplg[/youtube]


----------



## JMC

And this deserves more attention, what a great introduction from Dr Chamberlain
[youtube]IMS9PULY7Qo[/youtube]


----------



## Lady Organic

thx I watched the videos. Dr Amy mentions the amount of map in tissues drops when CD is in remission and also that the amount of MAP correlates with severity of symptoms, interesting....
Do we know if the amount of MAP also drops in people in remission treated with other medications ( immuno-supressants) or it remains as high? has this been tested? Logically, im thinking, an immuno-suppressant treatment would open the door to a bigger MAP infection in the long run with a weakened immune defense... any thoughts or knowledge?


----------



## rollinstone

Lady Organic said:


> thx I watched the videos. Dr Amy mentions the amount of map in tissues drops when CD is in remission and also that the amount of MAP correlates with severity of symptoms, interesting....
> Do we know if the amount of MAP also drops in people in remission treated with other medications ( immuno-supressants) or it remains as high? has this been tested? Logically, im thinking, an immuno-suppressant treatment would open the door to a bigger MAP infection in the long run with a weakened immune defense... any thoughts or knowledge?


Well, she didn't mention that but I have talked to john Aitken (his video should be up shortly) and he mentioned that in samples he's tested with people who are on remicade, amount of map was also lower, so I assume so, but maybe he mentions it more in depth in his discussion.


----------



## rollinstone

irishgal said:


> rollingstone - fundraising for the MAP vaccine or the fundraising on the Chicago symposium site? if it's the symposium site, it's in the infancy stages and being put in place now. We're redirecting any donors to the presenters websites until some type of crowd funding is put in place. I think the MAP vaccine just hit one of their targets and is ready to start trials on the diagnostic test.


Sorry. I meant the map vaccine/ the test


----------



## irishgal

Some Crohn's therapies are effecitive against MAP as well. Here's an article about infliximab:
http://www.ncbi.nlm.nih.gov/pubmed/22398081

There are more in the Core Research Pack that deal with 6MP and 5ASA. 
http://thecrohnsinfection.org/core-research-pack/

The biggest problem with MAP treatments and research is that there's never been a standard way to measure the MAP to see which patients have it, if it decreases after treatment, etc. That should change soon, and then these questions of yours can be answered!


----------



## irishgal

John Aitken's talk about Son of MAP is up! He's pretty funny. I especially love the slides about the supportive colleagues. From a micro perspective, his talk and pics are groundbreaking. No one's really been able to play with and study MAP this well until now.

http://thecrohnsinfection.org/symposium-information/


----------



## Malgrave

irishgal said:


> No one's really been able to play with and study MAP this well until now.


Except Prof. Hermon-Taylor of course, for years actually


----------



## irishgal

Malgrave - certainly we have to give kudos to Prof. Hermon-Taylor who's been doing MAP research for years, and Dr. Amy said in her video that he was successful at growing it in culture. I would never minimize their impact on the MAP research since they are also pioneers in the field!

Other researchers have certainly grown it in culture, and I wasn't trying to say otherwise,  but if you watch Mr. Aitken's video you'll see he's approaching this a different way. The slides he shows are like nothing I've ever seen in published literature. 

I don't view this as a competition, but rather as different research groups approaching this problem and studying it in a variety of ways, so as to provide the most knowledge and the best chance at an eventual cure. So certainly, I acknowledge Prof. John Hermon-Taylor's immense contribution to this field of research. BTW - what did you think of the video?


----------



## xeridea

I just watched the video. Thanks for posting it Irishgal. John Aitken is an entertaining presenter, and he gave a pretty informative talk about the different forms of MAP. 

He kind of does a good wrap up at the end, where he says that all the researchers are looking at the problem from slightly different directions, and as the answer emerges, they will be more confident about MAP being the culprit, or admit that they were completely wrong. Seems we just have to bide our time in the meantime.

Kudos to the folks who organized the symposium and brought these researchers together. I wish them all the best of luck and hope that they can crack this nut once and for all.


----------



## Lady Organic

irishgal said:


> Some Crohn's therapies are effecitive against MAP as well. Here's an article about infliximab:
> http://www.ncbi.nlm.nih.gov/pubmed/22398081
> 
> There are more in the Core Research Pack that deal with 6MP and 5ASA.
> http://thecrohnsinfection.org/core-research-pack/
> 
> The biggest problem with MAP treatments and research is that there's never been a standard way to measure the MAP to see which patients have it, if it decreases after treatment, etc. That should change soon, and then these questions of yours can be answered!


on methotrexate and 6-mp :
discussion from: On the Action of Methotrexate and 6-Mercaptopurine on M. avium Subspecies paratuberculosis
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1779805/
:

The efficacy of both methotrexate and 6-MP in the therapy of IBD is uncontested. Prevailing dogma accepts that the decrease in pro-inflammatory cytokines that attends their use is responsible for their beneficial effect. In this study we show that both methotrexate and 6-MP inhibit the growth kinetics of MAP. In the event that IBD is eventually accepted as being due to a MAP infection, our data are compatible with our hypothesis that methotrexate and 6-MP may be impairing MAP growth. If so, the decrease in pro-inflammatory cytokines could simply be an appropriate physiological response to their antibiotic-like activity.


----------



## Mother of Crohn's Teen

I've been a member for a few years but this is my first post  I was excited about the new research and I had to say something because something disturbs me. If the vaccine has taken 30 years already, it might be a waste of money. I saw Dr Chamberlains and Dr Aitken's videos, and what they have is exciting and groundbreaking. Its a no brainer for me, I would put my money when I have some with theses two guys who are going to get a nobel prize one day for their innovations of MAP and showing everyone that MAP can cause Crohn's. Dr Aitken's pictures were the defining moment for me, and listenng to Chamberlain proved to me he knows what he's talking about.


----------



## JMC

Mother of Crohn's Teen said:


> If the vaccine has taken 30 years already, it might be a waste of money.


The vaccine hasn't taken 30 years to develop, but it has taken a long time, mostly due to long periods waiting for funding to make progress.  Can you explain why you think "it might be a waste of money" as that statement doesn't really make any sense to me.


----------



## anti_map

I am convinced that MAP is the cause of Crohn's disease. Why is it so hard to kill MAP? Can we use Colloidal silver to kill it? We can't suffer 10 more years. We need a cure now.


----------



## irishgal

anti_map - It's so hard to kill because it forms persisters and mutates under antibiotic stress. We can certainly minimize it's impact and may eventually be able to kill it, but like TB, it's a really tough bug! I've heard the theory about colloidal silver as well, but I'm not ready to turn blue yet. Silver may do more harm than good. Anyone have any research on silver and MAP or any mycobacterial species? Dietzia looks promising to me as well as immune modulators in combo with AMAT.


----------



## xeridea

anti_map said:


> I am convinced that MAP is the cause of Crohn's disease. Why is it so hard to kill MAP? Can we use Colloidal silver to kill it? We can't suffer 10 more years. We need a cure now.


Well, I don't know about colloidal silver, but if you want to research other alternative anti-MAP approaches, you might want to look at this. There's a veterinary medicine guy out in Texas that thinks Gallium Nitrate may kill MAP because mycobacteria are iron-dependent bacteria and GA kills such bacteria even in macrophages.  Check it out 

http://george-eby-research.com/html/is-gallium-nitrate-a-treatment-or-a-cure-for-crohns-disease.pdf

There are other medicinal indications for Gallium. I personally would not touch the stuff without a lot of study and research.


----------



## rollinstone

irishgal said:


> anti_map - It's so hard to kill because it forms persisters and mutates under antibiotic stress. We can certainly minimize it's impact and may eventually be able to kill it, but like TB, it's a really tough bug! I've heard the theory about colloidal silver as well, but I'm not ready to turn blue yet. Silver may do more harm than good. Anyone have any research on silver and MAP or any mycobacterial species? Dietzia looks promising to me as well as immune modulators in combo with AMAT.


I don't think dietza works with anti-map as the antibiotics kill the dietza, in fact i think that's one of the exclusions in Borody's dietza trial for that very reason. I'm trying to find out if one can take it while on remicade though.


----------



## Mother of Crohn's Teen

JMC said:


> The vaccine hasn't taken 30 years to develop, but it has taken a long time, mostly due to long periods waiting for funding to make progress.  Can you explain why you think "it might be a waste of money" as that statement doesn't really make any sense to me.


It's a waste of money because it seems that Dr Chamberlain has something even better that will pass through government approval sooner. The vaccine has not even gone through human trials even though it should have by this length of time. The test that Dr Aitken has looks much more superior and much more further along that the test Dr Taylor is trying to develop, the pictures tell it all. Dr Taylor's daughter didn't even have pictures of MAP in her presentation so they can't be very advanced with this yet.


----------



## JMC

Mother of Crohn's Teen said:


> It's a waste of money because it seems that Dr Chamberlain has something even better that will pass through government approval sooner.


Dr Chamberlain has something different to Prof Hermon-Taylor.  It is closer in nature to steroids like Prednisolone and is aimed at modifying the behaviour of the innate immune system.  Prof Hermon-Taylor's vaccine is a state of the art T-cell vaccine which will train the adaptive immune system to kill MAP.  I agree with the words of Dr Chamberlain, the two treatments are likely to be complementary.




Mother of Crohn's Teen said:


> The vaccine has not even gone through human trials even though it should have by this length of time.


The vaccine needs to complete human trials, we all agree on that.  I don't think you can make any judgement about whether "it should have by this length of time."  Time provides no judgement on the value of an idea.  MAP was first suggested as the cause of Crohn's in 1913, by your logic it must be totally flawed by now!




Mother of Crohn's Teen said:


> The test that Dr Aitken has looks much more superior and much more further along that the test Dr Taylor is trying to develop, the pictures tell it all.


Dr Aitken is just culturing MAP and has found a media in which to grow it.  This is progress compared with previous attempts to culture MAP.  Prof Hermon-Taylor's approach is quite different and a lot more sophisticated.  One form of the test was completed about 3 years ago, in the intervening years he has been improving the test and growing the monoclonal reagents needed to make the test highly specific.  I don't think you know enough about what has been done and what remains to be done to make a judgement on which test is "further along", so it is probably best you don't make such pronouncements in public.



Mother of Crohn's Teen said:


> Dr Taylor's daughter didn't even have pictures of MAP in her presentation so they can't be very advanced with this yet.


That is not correct.  Prof Hermon-Taylor's daughter did not present images at the Symposium because the test is the subject of a patent application and you cannot publicly disclose that information before the patent is granted.  I have actually seen both sets of images (Aitken's and Hermon-Taylor's) and I know which ones are superior in term of detail and new information.


----------



## irishgal

Hi Mother of Crohn's Teen - I understand your frustration with how long the vaccine is taking. I think you're in good company there! Some people don't have time to wait since they are so sick now. The Hermon-Taylor's and John Aitken (and many other MAP researchers) are approaching the general problem of MAP from different sides. Until all the options are tested, we can't know for sure which one will work. I think back to 20 years ago and what was being offered to me when I was first diagnosed. It was pretty much prednisone or azulfadine. There wasn't even an Internet to do research with! And now the researchers have discovered so much more and the MAP research looks quite promising. The symposium was about collaboration and everyone putting aside their differences to achieve a much more important goal: to let the patients know about this new research. I think if the researchers in this field can work together, so can we. 

We may all have preferences and opinions about which treatments will work the best for our individual cases, but above all we should thank the researchers who have decided to devote their lives to help us. Wouldn't it be great if all the ideas worked and could be used in combo to finally give us the hope of a cure!

Most of you know that I had my sample cultured by John Aitken, and I was quite pleased with the result and information I got. (Not pleased I had MAP, but pleased I had some proof to take to my doctor and direct my treatment!) I also met Dr. Amy at the symposium and thought she was a lovely person. Her father's article was what got me started on MAP in the beginning, which has eventually led to remission for me. I hold them in high regard for the lifetime of work they've done with this line of research. I'm a micro person, so I preferred  to do the culture, and it was accessible. Others, like JMC, have had access to the vaccine group's lab for testing and have been happy with their experience. In even 5 years, we should have an answer, and it may be something no one has discovered yet! I'm willing to reserve judgment until all of the studies are done.

Rollinstone - I'd guess AMAT and Dietzia would be mutually exclusive, but Remicade may work in conjunction with Dietzia. However, because Remicade has some MAP killing effects, I wonder if that would exclude it. I just don't know enough about exactly how Dietzia works to guess with reliability, though I know the general idea. I hope Dr. Borody keeps on it and does a larger study! Let me know if you find out anything.


----------



## xeridea

The more researchers, the merrier, I say. There's currently about 80 clinical trials underway studying different therapies for Crohn's, bring on more.

Besides, because it's not yet definitively proven that MAP is the cause of Crohn's, it's good to have as many smart minds on the subject as possible. (Even MAP researchers attribute 50-60% of CD cases to MAP).

In my opinion, the biggest development with all this MAP research is creating a reliable, clinically accessible test, not so much the actual treatment. Redhill already has one they licensed from UCF (here's patent if interested in details.) that I think they're using in their trials, Prof. Hermon-Taylor's test seems to be in patent filing stages and should become available in a year or two, and then I learned recently that John Aitken has come up with some secret sauce medium within which he can culture MAP fairly quickly. Add to this PCR testing and you potentially have a handful of tests you can use.

Once MAP is proven as one known culprit, and we have a clinically accessible tests, then treating it becomes a much easier job. You can fall back to abx cocktail therapies or you can go the vaccine route. Prof. Hermon-Taylor's CMV is a good start, but there's been some pretty amazing advancements on the vaccine development front, many of which were significantly accelerated during the Ebola epidemic. If MAP is proven the be the cause in a significant proportion of CD patients, you may likely see additional vaccines developed, especially because this is a predominantly European and North-American disease, incidence is rising in youth, and ongoing care is so expensive for it.


----------



## JMC

xeridea said:


> Prof. Hermon-Taylor's CMV is a good start, but there's been some pretty amazing advancements on the vaccine development front, many of which were significantly accelerated during the Ebola epidemic. If MAP is proven the be the cause in a significant proportion of CD patients, you may likely see additional vaccines developed, especially because this is a predominantly European and North-American disease, incidence is rising in youth, and ongoing care is so expensive for it.


Did you know that the Oxford Clinical BioManufacturing Facility that made one of those Ebola vaccines is also making the Crohn's MAP Vaccine.

Other vaccines have already been developed, though they have focused on treatment of Johne's disease in cattle.  I mentioned it previously here: http://www.crohnsforum.com/showpost.php?p=809495&postcount=4


----------



## Nicola Price

xeridea said:


> "In my opinion, the biggest development with all this MAP research is creating a reliable, clinically accessible test, not so much the actual treatment. Redhill already has one they licensed from UCF that I think they're using in their trials, Prof. Hermon-Taylor's test seems to be in patent filing stages and should become available in a year or two, and then I learned recently that John Aitken has come up with some secret sauce medium within which he can culture MAP fairly quickly. Add to this PCR testing and you potentially have a handful of tests you can use."
> 
> Professor Hermon-Taylor's test is a rapid test that will only take 15 minutes, using existing lab equipment. Very accessible.


----------



## xeridea

JMC said:


> Did you know that the Oxford Clinical BioManufacturing Facility that made one of those Ebola vaccines is also making the Crohn's MAP Vaccine.
> 
> Other vaccines have already been developed, though they have focused on treatment of Johne's disease in cattle.  I mentioned it previously here: http://www.crohnsforum.com/showpost.php?p=809495&postcount=4


Hi JMC, yes, I recall you had mentioned this facility was involved in Ebola vaccine production.

What I was thinking about in particular though was Inovio. They have a method whereby they synthetically design T-Cell vaccines based on the DNA of the pathogen. They analyze multiple strains of the pathogen and apply advanced algorithms to derive DNA signatures that don't naturally occur, but are shared by all the strains. This way they formulate a universal vaccine against that pathogen. They also have devised a novel delivery mechanism that improves the uptake of the vaccine by the target cells by an order of magnitude. The manufacturing process is also very high yield and does not require mammalian cell cultures. They believe they can produce vaccines against cancers, viruses, and other pathogens using their technology. It's fascinating stuff. The Ebola tie-in here is that this company has been awarded multiple grants by DARPA for the strategic significance of this technology, the most recent, during the Ebola outbreak last year.


----------



## irishgal

Dr. Chamberlin's Immunikas and EpiBro talk is up! Dr. Amy and the MAP vaccine are next.

http://thecrohnsinfection.org/symposium-information/


----------



## mf15

http://thecrohnsinfection.org/dr-william-chamberlin-fepibro/



here is what the compound is 16-bromoepiandrosterone

http://thecrohnsinfection.org/dr-william-chamberlin/



it is an analog of DHEA, DHEA and DHEA-S are elevated in babies and seems to decrease in adulthood,

but it varies with age

that's what I gather from this paper, read last paragraph.

http://aac.asm.org/content/46/10/3180.full.pdf



Come to think of it I was taking DHEA at least 20 years ago, orally for immune modulation



the bromo form is synthetic.


DHEA IBD trial,

http://www.ncbi.nlm.nih.gov/pubmed/12562454


cant find anymore trials on dhea, makes you wonder if cheap treatments work,then follow up

somehow gets killed off. Also remember that in this trial these people were refractory to meds.


Then I have to wonder if plain old DHEA might also be having and effect on MAP like the bromo version.


When I took it pretty sure was not using 200mg.

a few more abstracts on dhea and mycobacteria
http://www.ncbi.nlm.nih.gov/pubmed/26099547
http://www.ncbi.nlm.nih.gov/pubmed/24963545
http://www.ijvm.org.il/sites/defaul...fects_of_dhea_and_aed_december_book_en1-3.pdf

Caution can have many side effects

http://www.mayoclinic.org/drugs-supplements/dhea/safety/hrb-20059173

Old Mike


----------



## irishgal

Amy's vaccine talk is now up on TheCrohnsInfection.org, along with lots of other interesting content all about MAP.

http://thecrohnsinfection.org/symposium-information/


----------



## xeridea

irishgal said:


> Amy's vaccine talk is now up on TheCrohnsInfection.org, along wi lots of other interesting content all about MAP.
> 
> http://thecrohnsinfection.org/symposium-information/


That was a good presentation by Dr. Amy. I like that she mentioned some of the timelines, with 2017 phase 2 probably being the pivotal year for proving out the vaccine. I also like that she put an initial price tag. I'm always interested in the numbers. It'd be interesting to see how that plays out financially if/when the trials show positive results. 

That last question from the audience was a bit harsh, I think the guy was referring to molecular mimicry and questioning whether introducing the MAP DNA signature in the vaccine will invoke an auto-immune reaction. But that's what the Phase 2 trials will sort out.


----------



## irishgal

xeridea - there was a point in the questions at the end where another audience member answers the original audience question, and they start talking back and forth. It was really hard to hear, but facinating to see the level of  intelligence even in the audience members. Clearly, the one gentleman was in the medical field. He asked another question of Dr. Rubin, and I remember Dr. Rubin called him the vector guy! I think his main issue was how the vaccine would be build without using an adenoviral base, or something like that.


----------



## rollinstone

Video is on private for me  anyone else having the same problem?


----------



## irishgal

rolinstone - we had an issue so had to temporarily pull it. We're working on it and I'm hoping it should be back later today. Sorry for the inconvenience!


----------



## Himoura

Has there been any news on the availability of the test for MAPs?  I understand from the video that the first human clinical trials will begin in Q1 2017.  That's still over a year away.  I would really like to be able to take the MAPs test and get confirmation so that when the vaccine does become available I can hopefully acquire it.


----------



## irishgal

Himoura - you can get a MAP test now via John Aitken's lab. I had one done prior to starting AMAT and he gave me detailed info on the type of MAP I had. Email him via his contact page at http://www.otakaropathways.co.nz.


----------



## AJC - Australia

Irish Gal, how are you going on the AMAT? Is that an anti boitic against MAP?


----------



## irishgal

happy poo poo said:


> Irish Gal, how are you going on the AMAT? Is that an anti boitic against MAP?


I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now. I'm on clarithromycin and rifampin. I was originally also on levofloxicin, since a triple combo is the best way to achieve long term remission, but the levo gave terrible joint side effects. I'm looking at adding clofazimine as a third antibiotic, but it's harder to get. I went from barely being able to get off the couch I was so sick to complete remission. It took about 6 weeks for me to feel like things were healing well, and then it was another 3-4 months before I gained all the weight back and had consistently normal bowel movements. 

I helped with the Chicago Symposium since the docs who had helped me were speaking there, and I was so mad my doc never even gave me the option of AMAT! It doesn't work this miraculously for everyone, but it has a consistently better remission rate than any other Crohn's treatments. Here's the Chicago symposium website which gives a lot more info and contains all the AMAT info you need to get started with your doc, including the videos from the symposium.

thecrohnsinfection.org


----------



## xeridea

irishgal said:


> I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now.


That's fantastic to hear, IrishGal, may your remission be long-lived. Are you also on LDN in addition to the antibiotics? I'm curious because it's listed as one of your support groups.


----------



## JMC

irishgal said:


> I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now. I'm on clarithromycin and rifampin. I was originally also on levofloxicin, since a triple combo is the best way to achieve long term remission, but the levo gave terrible joint side effects. I'm looking at adding clofazimine as a third antibiotic, but it's harder to get. I went from barely being able to get off the couch I was so sick to complete remission. It took about 6 weeks for me to feel like things were healing well, and then it was another 3-4 months before I gained all the weight back and had consistently normal bowel movements.
> 
> I helped with the Chicago Symposium since the docs who had helped me were speaking there, and I was so mad my doc never even gave me the option of AMAT! It doesn't work this miraculously for everyone, but it has a consistently better remission rate than any other Crohn's treatments. Here's the Chicago symposium website which gives a lot more info and contains all the AMAT info you need to get started with your doc, including the videos from the symposium.


That's really interesting and wonderful that you achieved such profound remission.  Due to generally pretty good, but not perfect, health I have thus far not tried the AMAT.  I also know of others who have tested positive for MAP and become more unwell after taking the antibiotics, so it is a tough call.  It's good to hear about the success stories though and fingers crossed many more come out of the RHB-104 trial.


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## irishgal

Hi xerida - yes I'm on LDN as well. I tried to add a signature which would list my meds, but I'm a but tech challenged! In any case, I added it when the levo failed. I was worried about being on just two antibiotics since some studies showed a greater chance at relapse, plus I'm worried about building MAP superbugs. Figured the LDN couldn't hurt while I was trying to get clofazimine, and Dr. Chamberlin told me he had patients use it in combo with AMAT and it worked beautifully. It has low side effects and my body is used to it now, so I don't notice anything.

JMC - I agree that most people don't have the miraculous recovery on AMAT like I did, but many of them tell me they get a bit better, and sometimes it takes longer than in my case. It's certainly not a risk free therapy (a friend of mine got an obstruction!), and I agree that if you're feeling well on something else, no need risk it. Hopefully you'll never need it, but at least it's an option if you do! I always like having a back up plan that I hope I'll nevere need. Very excited about the RHB-104 trial as well and getting antsy to get some results, which I'm guessing are a ways off still.


----------



## Himoura

irishgal said:


> I'm doing really well! I keep having to pinch myself because it feels like I've never had Crohn's. I've been on AMAT (Anti-MAP Antibiotic Therapy) for about 10 months now. I'm on clarithromycin and rifampin. I was originally also on levofloxicin, since a triple combo is the best way to achieve long term remission, but the levo gave terrible joint side effects. I'm looking at adding clofazimine as a third antibiotic, but it's harder to get. I went from barely being able to get off the couch I was so sick to complete remission. It took about 6 weeks for me to feel like things were healing well, and then it was another 3-4 months before I gained all the weight back and had consistently normal bowel movements.
> 
> I helped with the Chicago Symposium since the docs who had helped me were speaking there, and I was so mad my doc never even gave me the option of AMAT! It doesn't work this miraculously for everyone, but it has a consistently better remission rate than any other Crohn's treatments. Here's the Chicago symposium website which gives a lot more info and contains all the AMAT info you need to get started with your doc, including the videos from the symposium.
> 
> thecrohnsinfection.org


This is exactly how I would describe my recovery.  Constantly pinching myself because I can hardly believe I am having normal bm's and I have almost gained all my weight back.  My inflammation is almost gone I guess it's been about 2 months so I figure by about 4 months I should be in complete remission.

The reason I was asking about getting tested is because I am not sure if I will ever be able to go off this treatment and if I did how long would it take for me to slip back into Crohn's.  Idk.  The thought is scary.  I feel like I have a better chance of staying in remission because the method I am using involves rebuilding the ecology of the GI track rather than suppressing bacteria so I am rebuilding my bodies natural defense.

I can pretty much eat whatever I want now but I still try to eat a lot of fiber and drink water to keep things moving.  I believe slow digestion and leaky gut is what causes the inflammation and allergies or sensitivities.

My treatment isn't expensive only about $60 a month USD but it would be very nice to be completely cured and be able to cut that expense all together.

I am running 5k's at just over 22 or 23 min.  Can hardly believe it and my Joint pain is almost completely gone although I still have cracking and popping.  Really hoping that will go away and I am still young enough to heal up.


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## irishgal

Himoura - SOOOO ridiculously happy that you are well!!! :rof: I bet you could still have John test you and see if you have MAP. Maybe it's not your issue. While I believe most Crohn's patients have it, there could be other bugs that could cause similar issues, like AIEC. Whatever it is, your method seems to be doing the job! I'm also worried about long term antibiotics, but it's a better alternative now than long term, uncontrolled inflammation where I'm just wating for the one rogue cell to turn into small bowel cancer.

Good for you for curing yourself. Keep us posted!


----------



## irishgal

Also, there's bonus footage from the Chicago Crohn's MAP symposium! At the last minute, world renown gastroenterologist Dr. David Rubin, from the University of Chicago medical Center, gave a presentation. He talks about MAP, the microbiome, how he got started as a GI and what he sees for the future of IBD. Lots of great info!

http://thecrohnsinfection.org/symposium-information/


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## Himoura

irishgal said:


> Himoura - SOOOO ridiculously happy that you are well!!! :rof: I bet you could still have John test you and see if you have MAP. Maybe it's not your issue. While I believe most Crohn's patients have it, there could be other bugs that could cause similar issues, like AIEC. Whatever it is, your method seems to be doing the job! I'm also worried about long term antibiotics, but it's a better alternative now than long term, uncontrolled inflammation where I'm just wating for the one rogue cell to turn into small bowel cancer.
> 
> Good for you for curing yourself. Keep us posted!


Your very quick to rush to the conclusion of "Crohn's may not be your issue" but I think that's the wrong mindset to have.  Our symptoms are basically identical.  Have you ever met someone else that is sensitive to smells?  That's a very one off symptom.  Combine that with the bowel problems and inflammation and cracking and popping joints and food sensitivities and dramatic weight loss and I think it's fairly safe to assume we have the same thing.

Stay on your treatment by all means it seems to be working for you but also consider there is simply more than one way to tackle a problem.  Also recognize the problem for what it is.  Dysbiosis.  Plenty of people could have maps and show no symptoms.  Dr Taylor has proven this with cattle very substantially.  Why?  It's probably because the good bacteria in the gut is keeping it at bay.  If they had the antibody's to kill it there would be no maps.


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## irishgal

Hi Himoura - Just to clarify, I think Crohn's is your issue from what you've said, but maybe it's not MAP, though you do make a good point about our symptoms being ridiculously similar. I think those food/smell sensitivities and joint issues were due to leaky gut in my case. Without a MAP test, it's hard to know if you have it. I do think MAP is at the heart of most Crohn's disease, and there are probably multiple ways to treat that; AMAT being the most researched one, but your method seems to work as well. I'm not convinced Crohn's is general gut dysbiosis though. Dr. Borody makes the point about general antibiotics which affecting the microbiome not helping Crohn's patients. It's only when they target MAP that they see an improvement. Is it possible that there's another sneaky pathogen like MAP which coincidentally is killed by AMAT - sure. I think some people walking around with a MAP infection show no symptoms because they haven't been triggered yet - so maybe the gut microbes keep it in check to a point, but when you introduce a course of standard antibiotics that kill off some of the good bacteria, the MAP takes over. No one's really worked all that out yet, but I'm glad they're at least looking at it!

The point of my post to you was, YEAH!!! You're better!!! I'm so happy for you. Although I'd love to know the exact mechanism of how AMAT is working to make me well, there's a point where I'm just grateful it is, and hope that it lasts long enough for them to figure it all out. Trust me, your method is probably next on my list if I relapse!! I'm grateful for people like you who post things that have worked so there are backup plans, but I feel so good I'm not messing with anything now!


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## Himoura

This is why the test is so important.  There are millions of bacteria in the gut so there is no way to know for sure.

My entire immediate family has this.  Dad, mom, grandmother and all three of my brothers.  We all grew up on a farm with several cow pastures all around our property.  So I would be extremely surprised if it wasn't but who knows.  Especially considering my first cousins live about 20 min down the street from us in a rural area that doesn't have any pastures or farmlands and none of them have it.  I know that isn't scientific at all but that's why the test is so important.

This isn't just about me I would really like to see my entire family recover from this.  My dad has already undergone major surgery and had part of his colon removed.  He had a colostomy bag for months.  I'll do anything to avoid that.


----------



## Crohn2357

irishgal said:


> I do think MAP is at the heart of most Crohn's disease, and there are probably multiple ways to treat that; AMAT being the most researched one, but *your method seems to work as well.*


Hi, I probably read it but can't remember now, what is his/her method?


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## JMC

Himoura said:


> This is why the test is so important.  There are millions of bacteria in the gut so there is no way to know for sure.


There are millions of bacteria in the gut, the vast majority of which are completely harmless.  Looking for a cure to Crohn's by studying the microbiome, as Aitken put it, is like opening a phone directory and randomly dialing numbers in the hope that you will call your wife.  

As a scientist by education, it genuinely concerns me that this sort of research is attracting attention and funding as it has all the traits of bad science.  It's great if you are a career scientist looking to attract funding for the rest of your career, but terrible if you are a patient waiting for a cure as it is never going to narrow down to a solution.


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## irishgal

Exactly what JMC said. Why not eliminate the prime suspect (MAP) like Dr. Amy said in her talk, before looking around for another!? It's certainly maddening for patients who truly want the scientific data about MAP regardless of the outcome. They studies needed just aren't funded, and then you ask yourself, why? Hmmmm, maybe because there's a ton of money in the antiTNF market that would be wiped out, or maybe the beef/dairy lobbies are blocking it. Clearly something we don't know behind the governments' decision to ignore MAP for years past when it should have.

Himoura's treatment (who can augment or correct me) is something like using threelac as an enima kind of like a do it yourself fecal matter transplant, but with probiotic strains instead of fecal matter. I truly hope it keeps working and your family can get some relief. How awful that must be for all of you to be sick! Interesting about the farms. I'd heard that people on farms may actual have natural resistance to MAP, but clearly that wasn't the case in your situation. I had an ileostomy bag for a while and it was terrible. Avoid at all costs! Again, glad you are well!!!!!


----------



## Himoura

JMC said:


> There are millions of bacteria in the gut, the vast majority of which are completely harmless.  Looking for a cure to Crohn's by studying the microbiome, as Aitken put it, is like opening a phone directory and randomly dialing numbers in the hope that you will call your wife.
> 
> As a scientist by education, it genuinely concerns me that this sort of research is attracting attention and funding as it has all the traits of bad science.  It's great if you are a career scientist looking to attract funding for the rest of your career, but terrible if you are a patient waiting for a cure as it is never going to narrow down to a solution.


Which is exactly why the method I have come up with (a spin off of the FMT method) is one I believe has the greatest chance to keep a person in a remissive state regardless of what type of bacteria is ailing them and produce the greatest long term outcome.

If you want to get over this you have two choices.  Rebuild the good bacteria in the gut which will reconstitute your body's own natural defense (which accounts for 70% of the immune system) or try to kill it with an antibiotic approach which will ultimately harm good bacteria as antibiotics are I indiscriminate.

Do whatever works I am not advocating one method over another just pointing out the options and putting an alternative to drugs and antibiotics on the table.  I have and will achieve complete remission with zero drugs.


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## Himoura

I will disagree with JMC on one point though.  If there is a particular strain of bacteria that is causing people serious issues and that strain can be eliminated via vaccination than that's a win.  I believe this is what Dr Taylor and his people are doing and I fully support it and think it will ultimately cure Crohn's.  My opinion as that there are a handful of particularly nasty mycobacteria that are causing a lot of problems with MAPs being the most likely culprit at this point.

No point in arguing we will find out in 2017 I guess


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## irishgal

Himoura - you're probably be very interested in Dr. Borody and Dr. Click's Dietzia research. A probiotic strain that takes the place of MAP in macrophages from what I understand, thereby forcing MAP to find another residence, or just die. How I wish this were available now!!! Had I known about your approach prior to AMAT, I probably would've given it a try first, so I'm glad you put this out there now. AMAT does have years of research behind it though, and I'm not messing with anything that's making me feel this good.

I also wonder if disease location plays a part. Where is your disease primarily located? I can see this working better for people with disease in the colon, but mine is terminal ileum. Would be interested to hear your thoughts!


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## xeridea

There was this recent write-up in the Daily Mail about the Professor's Crohn's MAP Vaccine. I'm not sure how the paper is viewed in the UK given some of the other articles in there, but still, some exposure for the vaccine.


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## Nicola Price

The Mail article is many years old, actually. I understand that the journalist Martyn Halle has been approached with a request to update this information. It is very misleading that, for articles published a long time ago, the Mail online doesn't ever seem to show the original publication date.


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## Daytripper

Hi all, sorry to just jump in, but I wanted to ask what exactly is AMAT (Anti-MAP Antibiotic Therapy)? And why is it not an option for all of us? Thanks!


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## irishgal

Good question! It should be available, but since the large scale study is being done now, it's not technically an approved treatment pathway for Crohn's. Still, there's enough research where I felt it was just as safe as the other approved therapies, so have been on it for almost a year and in full remission. Best decision I made. The trick is finding a doctor who will read the research and agree to work with you to prescribe it. I've heard it's easier in the US than other places around the globe. There's a lot more info and research on this site:
TheCrohnsInfection.org.


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## Daytripper

That's brilliant, thanks for that I will have a look. From what I've read, it seems like a really good option- I'm just hoping that this leads to a cure someday....someday soon if possible! I will have a talk to my specialist nurse about it, however she raises her eyebrows when I mention cutting out dairy, so I doubt she would support anything like this! Thanks for the info irishgal, I am so glad it's worked for you and put you into glorious remission!


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## Malgrave

An excellent source of MAP here:

http://crohnsmapvaccine.com/literature-supporting-hypothesis-that-map-causes-crohns/

and

http://crohnsmapvaccine.com/downloads/


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## Jennifer

I'm not sure if this has already been posted and I haven't gotten a chance to read all of it yet (I've read the abstract but I'm researching CRPS at the moment) but I'm sure many would find it interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4385555/


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## irishgal

Yes, this is interesting because they use AntiMAP plus UVBI to help conditions other than IBD. A lot more study is necessary, but it's a start. I've personally thought that AMAT plus something else like an immunomodulator would be necessary to truly defeat autoimmune diseases. I added LDN and so far it seems to be working well. Fingers crossed!!

Thanks for sharing this Jennifer!


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## irishgal

Dr. Chamberlin has a Q&A going about AMAT here: http://thecrohnsinfection.org/anti-map-qa/

More will be posted as he gets to them. If you have questions about AntiMAP therapy that you want answered, feel free to post here/PM me and I'll do my best to get them answered by the docs.


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## JMC

Getting closer 

http://crohnsmapvaccine.com/testing-the-map-test/


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## irishgal

Thanks JMC - after the vaccine heroes have been tested, will it be open to the general population? The post mentions something about it being offered under a system of low cost, private health care and not covered by the NHS, which is understandable. How much will the test cost?


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## JMC

irishgal said:


> Thanks JMC - after the vaccine heroes have been tested, will it be open to the general population? The post mentions something about it being offered under a system of low cost, private health care and not covered by the NHS, which is understandable. How much will the test cost?


I don't know, I think it is too early to talk about costs, but keep an eye on the website for updates in the coming months.


----------



## xeridea

JMC said:


> Getting closer
> 
> http://crohnsmapvaccine.com/testing-the-map-test/


This is pretty good development! I'm looking forward to Prof. Hermon-Taylor publishing his findings. I posted on the CMV FB page about folks sharing their results and the moderator reply was that since they're testing known CD patients, they will all necessarily test positive. That would be excellent if there was a 100% hit rate. 

I'm also keenly interested how the CMV test findings compare to the testing in the RedHill trials.


----------



## JMC

xeridea said:


> This is pretty good development! I'm looking forward to Prof. Hermon-Taylor publishing his findings. I posted on the CMV FB page about folks sharing their results and the moderator reply was that since they're testing known CD patients, they will all necessarily test positive. That would be excellent if there was a 100% hit rate.
> 
> I'm also keenly interested how the CMV test findings compare to the testing in the RedHill trials.


Well, I am due to be tested on Tuesday 17th November.  My resection samples from 2012 showed patchy MAP infection when tested last year.  It will be interesting to be tested again, as I am relatively well and according to my gastro, a recent colonoscopy and MRI scan showed that there are no clinical signs of disease in my bowels.


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## JMC

The test is here and the vaccine trial is getting closer and closer.  I spent some time chatting with JHT this morning and had a chance to look round the lab at the new equipment and chat with the lab tech.  Things are looking very positive right now.  I will let you know the results when they come back in the next few days.

http://crohnsmapvaccine.com/testing-begins-on-the-volunteer-team/


----------



## xeridea

JMC said:


> The test is here and the vaccine trial is getting closer and closer.  I spent some time chatting with JHT this morning and had a chance to look round the lab at the new equipment and chat with the lab tech.  Things are looking very positive right now.  I will let you know the results when they come back in the next few days.
> 
> http://crohnsmapvaccine.com/testing-begins-on-the-volunteer-team/


Your updates are greatly appreciated JMC. I'm so hoping either MAP and/or AIEC prove to be behind CD. 

The CMV and RedHill MAP, and the Qu AIEC efforts are what I'm most excited about at the moment. In distant second is the FMT and microbiome research efforts. Hoping the answer lies in these somewhere.


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## Ozman

Oh God ! The posts I've been reading so far, makes me feel like our prayers for 'crohns cure' is in progress ! Recently going through bad flares & wished if I could get the AMAT now. Anyway GOOD LUCK to all & hoping for a bright future


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## JMC

Just to let you know I have been too busy at work this week to drop into the lab to look at my results.  Prof Hermon-Taylor says that he has images of MAP in my blood and my result is still positive.  Hopefully next week I will be able to visit again and take a look.


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## irishgal

New post by John Aitken: Victory
http://thecrohnsinfection.org/presenter-blog/


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## sid

these new developments are really encouraging... wish Dr Taylor all the best for the new MAP TESTing tests


----------



## Mattie

Do you have an update for us JMC? Did you manage to get your blood test results yet?


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## JMC

Mattie said:


> Do you have an update for us JMC? Did you manage to get your blood test results yet?


My test results were positive, but due to being very busy at work in the run up to Christmas I have not been able to get to the lab to have a look in more detail.  A number of people have been tested now, so I will try to summarise in a post once I have had the chance to sit and talk with JHT.


----------



## JMC

Just before Christmas I had the chance to visit Prof Hermon-Taylor at his lab at King's College London.  So far, 16 Crohn's patients have been tested and all were positive for MAP.  We reviewed the images of my 2012 resection and my recent blood test and he showed me how and where my blood and tissues were infected.  Approximately 12% of my white blood cells were infected with MAP.  Currently he is able to test about 4 samples per week and will continue to test more patients into 2016 and will then publish the result probably mid-2016, depending on other factors such as progress with the patent registration.  JHT is very happy with progress and the fact that he now has all 4 monoclonal reagents and a new flow cytometer.

On sadder news, Joanna Cardwell, the graphic designer who did a lot of work for the Crohn's MAP Vaccine website, died today from Bowel cancer.  She had suffered with UC/Crohn's for 30 years and was diagnosed with stage 4 bowel cancer only a matter of weeks ago.  She will be greatly missed.

http://crohnsmapvaccine.com/joanna-cardwell-rip/


----------



## Kat123

Thank you for sharing this JMC. It's very interesting research and I await the results with interest. Do you know what is the limiting factor in only being able to test 4 samples per week?


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## irishgal

JMC - My condolences to you, JHT, Amy and your team on the loss of Joanna. It's what every Crohn's patient fears, and I am so sorry that the cure didn't come soon enough for her and for so many others. From the little I know of her, she seemed like a lovely woman, and I'm sure her efforts for the cause will make an impact for many years to come.

Will look forward to reading JHT's research when it is published. I'm sure you will post here and let us know. Happy New Year to you all. 2016 is looking pretty bright for Crohn's sufferers.


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## JMC

Kat123 said:


> Thank you for sharing this JMC. It's very interesting research and I await the results with interest. Do you know what is the limiting factor in only being able to test 4 samples per week?


I haven't been through the full process in detail, but I believe with the current staffing (two lab techs) and equipment (one flow cytometer) it is the most they can get through.  I am sure this will be speeded up in the future, but right now they are focusing on getting a small number of high quality results for publication, rather than industrial scale.


----------



## AJC - Australia

This is great news….has JHT tested any healthy people?


----------



## xeridea

On a related note, GeneThera announced yesterday that they are expanding into the human MAP vaccine space from their current livestock focus. 

They will be developing a therapeutic MAP vaccine, and expanding their diagnostic capabilities.


----------



## MarkB

happy poo poo said:


> This is great news….has JHT tested any healthy people?


Saw Amy Hermon-Taylor present on her father's behalf last summer at the research symposium in Illinois. I recall her saying that they do sometimes detect MAP in healthy individuals, but generally at much lower levels than Crohn's patients. 

MAP is a prevalent contaminant. Some folks may be able to fight it off better than others. 

You can find Amy's videos from the symposium here: http://thecrohnsinfection.org/symposium-information/


----------



## Scared1

Does anyone know what happened with this human trial vaccine? For something that can be so profound and with all the additional research happening pointing to the role of gut bacteria as a contributor to the pathogenisis of this disease - I don't know why this isn't followed so closely.


----------



## xeridea

Scared1 said:


> Does anyone know what happened with this human trial vaccine? For something that can be so profound and with all the additional research happening pointing to the role of gut bacteria as a contributor to the pathogenisis of this disease - I don't know why this isn't followed so closely.


According to the vaccine site, Phase I trials are starting June of this year.


----------



## Scared1

Thank you xeridea,
My husband was recently diagnosed - I went through a panic (literally like my whole world fell apart and being 7 months pregnant, took a toll on my health). Especially, since he is completely asymptomatic and still is - we just "happen" to get this diagnosis when we went to a GI for something else. Reading research on causes of Crohn's and a possible vaccine, gave me hope that if symptoms were to develop later on in his life that perhaps it can be cured in his lifetime.  So thank you for the link


----------



## MarkB

Scared1 said:


> Does anyone know what happened with this human trial vaccine? For something that can be so profound and with all the additional research happening pointing to the role of gut bacteria as a contributor to the pathogenisis of this disease - I don't know why this isn't followed so closely.


I agree 100%.  As a lay person who's done a lot of reading on the topic, I find it incredibly frustrating.  My wife & I have raised the MAP cause with our gastroenterologists, and they're completely unaware of the past 20 years of research. One Crohn's specialist told us he goes to all the CCFA conferences, and it never gets mentioned there.  That may be a big part of the problem.  CCFA is the 100 pound gorilla, and if they aren't including this in their conferences, mainstream GI's aren't going to hear about it.  

We brought several papers from medical journals with us to one Crohn's specialist--he was entirely dismissive.  He picked one line out of the abstract--something along the lines of "association does not prove causation"--and his response: "See, no causation."  He's been to CCFA.  Medical research?  No time for it.  

Another GI--once we explained to him what MAP was: "Oh, they kind of settled that 20 years ago and found it wasn't the cause."  Wrong, and completely ignorant of the past 20 years of medical research on the topic.  

One thing that really upsets me is that CCFA (or someone acting on their behalf) has created a web site that is clearly attempting to divert people away from the MAP vaccine site, http://thecrohnsinfection.org/.  

If you leave off the 'the' in this URL, and type crohnsinfection[dot]org, it redirects you to CCFA.  That's playing dirty.  Not sure if CCFA did it, or one of the big pharmas who are making money treating Crohn's symptoms.  

I can only $peculate why CCFA would not be promoting more research and education on anti-MAP therapy from the published medical literature; and not promoting more funding for the vaccine trials.   

Anyone coming into this topic cold, http://thecrohnsinfection.org/ is a great place to start educating yourself.


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## Scared1

I agree 100%. I dont think they did it intentionally, but I think the focus is that we should treat the symptoms - that provides more tangible results rather than search for a cure. What I feel another contributor to the issue or lack of focus by GI's is that crohn's (or all of the subc ases of whatever diseases comprise crohn's) are autoimmune based. Being a Biochemist - this is my qualms with that based on the journals i read:
1. Crohn's is categorized by flares and remissions - when you have any other disease, diabetes, lupus, etc they tend to be stagnant pretty mention and always present in one for or another. 
2. There is no antibody being formed - there are microbial antigens being formed for severe fistualizing cases, but those are similar to bacterial/pathogenic reactions to the intestines which really aren't the same.
3. The genetic piece - my husband is 28, first generation Canadian with absolutely no history of IBD - no one. I understand that is SOME relationship, but with the fact that current rise in IBD cases are from 1st generation makes me wonder, if there is a genetic link (which probably there is but not as direct as it may be assumed), then it should be more than 20-30% of the statistic that states IBD sufferers have family members with the disease. 
4. Why do some cases of AMAT therapy work? If there is no link - would taking AMAT for something else cause the same outcome? There has to be a link - association or causal so that taking that works for some. My GI - fantastic man (top medical school, 32 years of experience with Crohn's) said something profound to me when we got the diagnosis. He said "you know, we really think that Crohn's is like a bunch of diseases - who knows how many, that manifest themselves in inflammation." So, taking lupus and diabetes, etc... as benchmarks, do they even have that much variability as Crohn's does in how it manifests itself with patients? Not all. It tends to vary, but not like we see in Crohn's. So, given that, why isn't it plausible that a subset of these patients have an infection that is manifesting itself and therefore categorized as Crohn's?
5. The presence of some granulomas in the histology of some patients. In ASLC (acute self limiting colitis) where the body reacts to an infection, shows the same type of histology and symptomatic pattern as Crohn's except the body takes care of it and it is short-term. Granulomas are also shown in cases (and I have some articles) which show they are formed when you have certain infections - such as TB. My husband's pathology showed some rare granulomas in the absence of inflammation but no crypt architecture changes, nothing.  Even though this is not seen in all of Crohn's, why would the body form these if it wasn't reacting to an infection of SOME sort? It doesn't form in any other autoimmune disease - why? 
6. Why is it always so concentrated in some individuals in the ileum or certain parts of their intestine? If my body was "out of whack" and attaching my intestines, it wouldn't care where right? If i have arthritis, it attacks all my joints and tissues in some places for than others. Why in Crohn's its very specific in some people and never really progresses? 

I am going to stop but I can keep on going, I literally have reviewed so much literature, and even got to the point of setting up automatic alerts where anything related to this topic, I read every morning. I just find it hard to believe that for high level symptoms such as cramping, diarreha, etc.. which, anyone can assume they have teh same cause yet can't explain the variability and find a common pathogenisis pattern for the disease. Any what would the big deal really be if they looked at MAP a bit more? For the vaccine they are asking for let's say an extra half million...I swear, if I was able to, I would fund it myself because if there is a possibility, that this would assist in developing something that MAY help a small subset of Crohn's sufferers - especially children, which breaks my heart completely. My husband has no symptoms by the way - like NONE whatsoever, and they based his diagnosis on the inflammation and a calprotectin level of 313 (and he was taking antibiotics at the time so I don't even know if 100% sure he has it). And I freaked out - then I read about these families and people who suffer and I feel guilty and sad and pray every day that something comes out to help. If MAP has a possibility, what is a couple hundred thousand for that chance versus billions of dollars insurance companies spend? The CCFA invested 2.5 million to study diet and Crohn's - like some of that can't just be used to finish this vaccine situation up and see - yay or nay? If it doesn't work, then they can put it to rest finally and look elsewhere. Regardless, I still don't think the cause is auto-immune, there are too many ifs.


----------



## MarkB

Good post. Some thoughts on some of the issues you touch on...



Scared1 said:


> ... I think the focus is that we should treat the symptoms - that provides more tangible results rather than search for a cure.


Well in the near term, anyway, since there is no established cure.  But fundamentally, researching the cause and the cure is a huge deal.  Especially given the overwhelming evidence that implicates MAP as a major cause. While we await a cure, treating symptoms is of course important.  And some are having success at knocking down MAP with AMAT therapies -- some achieving complete remission, as described in the literature. 

"When appropriate methods are used most people with Crohn's disease are found to be infected. There are no data which demonstrate that these pathogens are harmless to humans. An overwhelming balance of probability and Public health risk favours the conclusion that Mycobacterium avium subspecies paratuberculosis ["MAP"] is also pathogenic for people. A two tier co-operative pathogenic mechanism is proposed in Crohn's disease." - John Hermon-Taylor, http://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-1-15




Scared1 said:


> ... 3. The genetic piece - my husband is 28, first generation Canadian with absolutely no history of IBD - no one. I understand that is SOME relationship, but with the fact that current rise in IBD cases are from 1st generation makes me wonder, if there is a genetic link (which probably there is but not as direct as it may be assumed), then it should be more than 20-30% of the statistic that states IBD sufferers have family members with the disease.


On genetics, see Jostins et al., 2012: http://www.nature.com/nature/journal/v491/n7422/full/nature11582.html 

Truly amazing genetics work.  And the stunning observation: "We also observe considerable overlap between susceptibility loci for IBD and mycobacterial infection. "  

(Mycobacterial, as in MAP). 





Scared1 said:


> ... My GI - fantastic man (top medical school, 32 years of experience with Crohn's) said something profound to me when we got the diagnosis. He said "you know, we really think that Crohn's is like a bunch of diseases - who knows how many, that manifest themselves in inflammation."


Makes an accurate, quick test for MAP kind of important. Hermon-Taylor's group has made huge advances in this area, and they claim to see MAP in all the Crohn's patients they look at; and can see the MAP numbers go down as patients are on anti-MAP therapy.  



Scared1 said:


> 6. Why is it always so concentrated in some individuals in the ileum or certain parts of their intestine? If my body was "out of whack" and attaching my intestines, it wouldn't care where right? If i have arthritis, it attacks all my joints and tissues in some places for than others. Why in Crohn's its very specific in some people and never really progresses?


Good question. Maybe relates back to genetic susceptibility to infection from mycobacteria, and susceptibility to Crohn's. 




Scared1 said:


> Any what would the big deal really be if they looked at MAP a bit more? For the vaccine they are asking for let's say an extra half million...I swear, if I was able to, I would fund it myself because if there is a possibility, that this would assist in developing something that MAY help a small subset of Crohn's sufferers - especially children, which breaks my heart completely.


Totally agree. Quite possibly, it would assist in a large subset of Crohnies.  

Best to you!


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## JMC

Scared1 said:


> 1. Crohn's is categorized by flares and remissions - when you have any other disease, diabetes, lupus, etc they tend to be stagnant pretty mention and always present in one for or another.


In that respect, it is very similar to tuberculosis.  The more I read about TB, the more I see similarities with Crohn's.



Scared1 said:


> 2. There is no antibody being formed - there are microbial antigens being formed for severe fistualizing cases, but those are similar to bacterial/pathogenic reactions to the intestines which really aren't the same.


Have you watched Prof Marcel Behr's video on Youtube?



Scared1 said:


> Regardless, I still don't think the cause is auto-immune, there are too many ifs.


Crohn's isn't autoimmune, we need to stop referring to it as such as it is holding back research progress


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## durwardian

Crohn's, like so many other diseases, is not just one disease, and the research would go much farther, much faster, if they would define the differences and causes. Right now, there is a heap of people with similar symptoms and after 13 years I finally proved to them that I don't have the textbook Crohn's, and they need to stop treatment me like I have Crohn's and look for the real cause of my symptoms.
JMC mentioned it perfectly, fistulizing, TB similar, auto-immune, bacterial issues, infection issues. 
Basically, if you don't have changes to the tissues in the intestinal tract that are visible signs of Crohn's, and the blood values to match, it isn't Crohn's and they need to keep looking and not just put people on medications for years. In particular, listen to the patient when they say that the medicine is just making things worse.
My discovery, and healing, has been that I discovered intestinal serotonin could cause all of the symptoms, including the others, like osteoporosis at an early age. After some research, I asked if we could try medication for it. When they ignored me, I got some anyway and tried it. Now for weeks I have zero Crohn's symptoms and normal bowels. Had I known this 13 years ago I could have saved myself 7 surgeries and continued to work normally, I would not be ruined and suffering for so long. I do blame the ignorance of the medical world, and the lack of diagnostics and research. I am bitter that I was dragged down this road and treated like this for so long.
So don't trust that the doctors know what they are doing or have actual diagnostic skills. They are all incompetent.


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## Scared1

Hi JMC - yes, I have watched pretty much every video out there Wanted to make sure I educate myself as much as possible. I also wonder - playing the devils advocate - with the MAP vaccine, they have been talking about it for almost years. I came across blogs from 2000 and in one blog about how it was pushed back. I am worried that may keep happenng as they keep pushing things back. 

I also read JMC - that you tested positive for MAP and have been on AMAP for a while, is that correct? Is it still effective? I think if anything, this redhill 104 study will be huge - if it does show a significant decrease in symptoms in this study, it will pave the way for more acceptance, at least for this treatment by GI's. If anything, I think GI's will not speak of it, just because maybe some are waiting around to see what the results will be. I don't think their reasons are financial or due to any conspiracy, but they will get on the bandwagon when they see it is accepted and everyone else is on it. Their investment is treating the patients, that's all they want to do - not really go into a research type of arena or any debate regarding treatments or causes, until it is figured out and shared to them.


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## Scared1

durwardian, I agree with most of what you are saying and it is so unfortunate that happened to you, I am so sorry.:-( Actually, when you say incompetent I can relate because if you hear my husbands story you would think it is so odd.
1. He had anal pain only at the site of the rectum last year. We went to a GI and he said lets do acolonscopy. They did one, found inflammation - super mild. Then he said maybe its Crohn's. Mind you, my husband has NO symptoms with a slightly elevated Fecal Calprotectin. Then hes like come back in 3 months. Biopsy showed no cryptitis or any chronic changes and rare granuloma (per the GI's words - very very few) in the colon. We come back in 3 months, did a CT scan, colon is normal, mild luminal narrowing where the ulcers were. Then hes like, well he has crohn's. And printed a google search of medications and said we need to put him on this. I am like but he has no symptoms ever, no tenderness to the touch of his abdomen, nothing and I was confused. So he said, well we saw granuloma so for sure its crohns or tuberculosis. I go home and did some research and found that in acute-self limiting colitis and various other infections, granulomas in the of any chronic factors can be completely found in non-crohn's cases. I was like forget this. Took him to another GI - Columbia medical school, 32 years experience, and he said well it most likely is crohn's. I said 100%, he said most likely, can't say 100%. So we have him on Liadla now. Yet not one figured out the anal pain yet. I just don't feel like I can trust anyone completely - I would feel so much better if my GI had a genuine interest in my husbands health and said let's figure this out.


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## JMC

Scared1 said:


> I also wonder - playing the devils advocate - with the MAP vaccine, they have been talking about it for almost years. I came across blogs from 2000 and in one blog about how it was pushed back. I am worried that may keep happenng as they keep pushing things back.


Medical research is frustratingly slow.  The MAP vaccine keeps edging forward, but yes, it has taken many years.  I think we all wish it could go faster.



Scared1 said:


> I also read JMC - that you tested positive for MAP and have been on AMAP for a while, is that correct? Is it still effective?


I have been tested twice (resection tissue samples and blood) with the test John Hermon-Taylor is developing and both were positive.  Remember though this test still needs to pass clinical validation, so may be inaccurate.  I have not taken any AMAT as since having a resection in 2012, I have been in remission and azathioprine seems to work for me (though that is not to say my health or bowels are perfect.)


----------



## durwardian

Scared1 said:


> durwardian, I agree with most of what you are saying and it is so unfortunate that happened to you, I am so sorry.:-( Actually, when you say incompetent I can relate because if you hear my husbands story you would think it is so odd.
> 1. He had anal pain only at the site of the rectum last year. We went to a GI and he said lets do acolonscopy. They did one, found inflammation - super mild. Then he said maybe its Crohn's. Mind you, my husband has NO symptoms with a slightly elevated Fecal Calprotectin. Then hes like come back in 3 months. Biopsy showed no cryptitis or any chronic changes and rare granuloma (per the GI's words - very very few) in the colon. We come back in 3 months, did a CT scan, colon is normal, mild luminal narrowing where the ulcers were. Then hes like, well he has crohn's. And printed a google search of medications and said we need to put him on this. I am like but he has no symptoms ever, no tenderness to the touch of his abdomen, nothing and I was confused. So he said, well we saw granuloma so for sure its crohns or tuberculosis. I go home and did some research and found that in acute-self limiting colitis and various other infections, granulomas in the of any chronic factors can be completely found in non-crohn's cases. I was like forget this. Took him to another GI - Columbia medical school, 32 years experience, and he said well it most likely is crohn's. I said 100%, he said most likely, can't say 100%. So we have him on Liadla now. Yet not one figured out the anal pain yet. I just don't feel like I can trust anyone completely - I would feel so much better if my GI had a genuine interest in my husbands health and said let's figure this out.


Sorry to hear that. But, how is that diagnosing a disease? I felt that if I got better on the medications, perhaps they were right. But I tried them it did nothing, which further proves that it was not the problem.
Only years later, doing my own experimentation and research, and after 7 surgeries to fix the problems going on in there, have I found relief and answers.
For me if I adjust my serotonin uptake, not SSRI's, but SSRE, so enhance it and get rid of the excess serotonin, do all symptoms stop and I am healing. I did further research and testing on myself, and found two gene things that make sense, but could be circumstance. One is that I have multiple GAD mutations in my DNA, COMT mutation, and MAO-A. So I can't put the brakes on the neurotransmitters and nerves just get irritated, causing the pain and cramps, damage, etc. By removing the serotonin, my bowels returned to normal and the cramps, runs, damage has stopped. Bacteria in the bowels can produce serotonin without our help, so diet and such does nothing to change some of that. SSRI's just make things worse, we don't want to block it, we don't want to increase production of it.
http://www.nature.com/ctg/journal/v3/n4/full/ctg20128a.html
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977648/
Google what serotonin does in the body and why.... my Gastro doctor had no clue and never heard of it, my rheumatology doctor the same. But it also causes Osteoporosis
http://www.webmd.com/osteoporosis/news/20100205/serotonin-may-be-a-key-to-treat-osteoporosis
So, back to the basics. They don't look, they don't diagnose, they don't try. They throw horrible drugs at people and make things better by blocking your immune system?
There is something seriously wrong with this picture. Don't put his health at risk, but try things and pay attention to what works and what doesn't.
I think that the bacteria are out of balance perhaps, causing more serotonin, this is the damage we see. Sometimes there are connective tissue diseases that are to blame. Sometimes it is another form of psoriasis and such. So don't be hell bent on this solution as yours. If it is something else, like an immune reaction, the treatment will be different. 
One question, does he get rather grumpy, or mental roller coaster. Seem irritable a lot about little things? Do the symptoms come and go or are they constant?


----------



## worriedboy

durwardian said:


> Crohn's, like so many other diseases, is not just one disease, and the research would go much farther, much faster, if they would define the differences and causes. Right now, there is a heap of people with similar symptoms and after 13 years I finally proved to them that I don't have the textbook Crohn's, and they need to stop treatment me like I have Crohn's and look for the real cause of my symptoms.
> JMC mentioned it perfectly, fistulizing, TB similar, auto-immune, bacterial issues, infection issues.
> Basically, if you don't have changes to the tissues in the intestinal tract that are visible signs of Crohn's, and the blood values to match, it isn't Crohn's and they need to keep looking and not just put people on medications for years. In particular, listen to the patient when they say that the medicine is just making things worse.
> My discovery, and healing, has been that I discovered intestinal serotonin could cause all of the symptoms, including the others, like osteoporosis at an early age. After some research, I asked if we could try medication for it. When they ignored me, I got some anyway and tried it. Now for weeks I have zero Crohn's symptoms and normal bowels. Had I known this 13 years ago I could have saved myself 7 surgeries and continued to work normally, I would not be ruined and suffering for so long. I do blame the ignorance of the medical world, and the lack of diagnostics and research. I am bitter that I was dragged down this road and treated like this for so long.
> So don't trust that the doctors know what they are doing or have actual diagnostic skills. They are all incompetent.



Would it be ok to ask, what are you supplementing and what is your goal in regard of the serotonin levels ?


----------



## Scared1

Durwardian - I can't believe 7 surgeries, I am so upset for you and I can't imagine how frustrating that is, I am so sorry. He has absolutely NO symptoms, and I mean like he is super regular, and never has any problem eating anything, his mood is always happy and positive, and he works out, plays soccer, has no limitations. I am thinking he had hemorroids at one point and then it resulted in residual anal pain. In terms of his stomach - he NEVER has any stomach problems. The biospy showed no chronic changes to anything, and the report even said other etiology is possible. I don't know, it has been a horrible few months to say the least. He just did a fecal calprotectin test today and we will see - if the number is in the normal range (it was 313 last fall) and he was literally taking something very similar to accutane at the time when he did, I am going to seriously question his diagnosis because how can Lialda drop that inflammation in 3 weeks of using it? And if it is the same or higher, then I will say ok, something is wrong. But what bothers me is why all this back and forth - why can't a GI say, there is a possibility that its not crohn's but I dont know. Even if they tell me its not, I will not believe them - its like they planted a seed of doubt. I have no idea...


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## xeridea

durwardian said:


> So, back to the basics. They don't look, they don't diagnose, they don't try. They throw horrible drugs at people and make things better by blocking your immune system?


Don't blame the doctors, after all, they're only practicing medicine.


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## durwardian

Scared1 said:


> Durwardian - I can't believe 7 surgeries, I am so upset for you and I can't imagine how frustrating that is, I am so sorry. He has absolutely NO symptoms, and I mean like he is super regular, and never has any problem eating anything, his mood is always happy and positive, and he works out, plays soccer, has no limitations. I am thinking he had hemorroids at one point and then it resulted in residual anal pain. In terms of his stomach - he NEVER has any stomach problems. The biospy showed no chronic changes to anything, and the report even said other etiology is possible. I don't know, it has been a horrible few months to say the least. He just did a fecal calprotectin test today and we will see - if the number is in the normal range (it was 313 last fall) and he was literally taking something very similar to accutane at the time when he did, I am going to seriously question his diagnosis because how can Lialda drop that inflammation in 3 weeks of using it? And if it is the same or higher, then I will say ok, something is wrong. But what bothers me is why all this back and forth - why can't a GI say, there is a possibility that its not crohn's but I dont know. Even if they tell me its not, I will not believe them - its like they planted a seed of doubt. I have no idea...


And why break all the rules and treat something that is causing no issues? That is like the first rule of medicine, unless it is prevention, don't mess with it. Unless you need to correct a symptom that is causing damage or threatening, don't mess with it.

Many of these drugs shut down important body reactions that need to be there, or reduce them to dangerously low levels. Leaving people open to infections and diseases that can be prevented. So my question is, who is paying them to push these drugs? This is just not right.

In any case, I am not here to diagnose your husband. Or to practice medicine. I just think that they do many things without thinking, without testing, without proper diagnostics, and then you can't touch them, even if they are wrong, and they are free to repeat this over and over on others.

I saw many doctors, many specialists. They are all blind to anything outside of the area of medicine they practice in, and rarely see any new research, rarely pay any attention to proper continued education. I don't trust any of them, and none of you should either.

Going to other doctors doesn't seem to do any good. They are all schooled in the same nonsense, and can't see any connections to immune systems, bugs, or other reasons, and they don't want to treat any of the other possibilities, or even test for them. So they all deserve a special hell, and I hope there is one. I say they are literally killing people and causing continued suffering, and nobody is doing anything to stop them. 

When you bring them studies and reports, and the facts, possible tests, they say uh huh, and then ignore, or they try, and the insurance blocks it. So there is no way out of this mess except to help ourselves, or go to another country where they do what you pay them for.

Enough soap box... just that blocking this MAP and other possible treatments are stupid of this country. Move it along, get the research done. Some of the treatments are great and should be used, because some people really do have a disease called Crohn's, but the rest of us don't, and we don't get the correct diagnosis because the doctor's are so fixated on one thing, and have no brains.


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## irishgal

MarkB said:


> One thing that really upsets me is that CCFA (or someone acting on their behalf) has created a web site that is clearly attempting to divert people away from the MAP vaccine site, http://thecrohnsinfection.org/.
> 
> If you leave off the 'the' in this URL, and type crohnsinfection[dot]org, it redirects you to CCFA.  That's playing dirty.  Not sure if CCFA did it, or one of the big pharmas who are making money treating Crohn's symptoms.
> 
> I can only $peculate why CCFA would not be promoting more research and education on anti-MAP therapy from the published medical literature; and not promoting more funding for the vaccine trials.
> 
> Anyone coming into this topic cold, http://thecrohnsinfection.org/ is a great place to start educating yourself.


Mark - Thank you so much for bringing this to my attention! As many of you know, I am a long term Crohn's patient who has had great success with AMAT. So much so, that I and a few others created the above website to give people the information I had to struggle to find. It was originally meant to promote the Chicago symposium, but has continued. Just for clarity, this is not the MAP vaccine site, but a different site that discusses the treatment of Crohn's as a MAP/mycobacterial infection in general. I adore John and Amy Hermon-Taylor, and applaud their efforts and research, which can be found here: CrohnsMAPVaccine.com.

Until today, I had no idea that those copycat websites redirected to the CCFA. I don't know who purchased these, but I can tell you they were purchased on August 20, 2015, four days after the Chicago symposium. Both the .org and the .com redirect to the CCFA home page - where there is no MAP content. I can only speculate, as Mark does, why anyone would do this. Our website is small, barely funded and in no way can take any significant portion of traffic away from the CCFA behemoth. Our sole purpose is to put the research on MAP/mycobacteria out to patients and let them learn on their own. For a treatment that currently has a Phase 3 FDA trial going with almost 90 centers worldwide (RedHill) I'm actually amazed CCFA hasn't said anything about AMAT. I won't speculate publically, but as is the theme of our true site, will let you come to your own conclusions after hearing the facts.


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## MarkB

irishgal said:


> ... I and a few others created the above website to give people the information I had to struggle to find. It was originally meant to promote the Chicago symposium, but has continued. ...


Thank you!  My wife & I attended the symposium. It was great.  The content should be plenary session material for CCFA.  Maybe someday, after John Hermon-Taylor wins the Nobel prize in medicine.


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## Zim

xeridea said:


> According to the vaccine site, Phase I trials are starting June of this year.


In the *latest newsletter* MAP vaccine team stated this:

_A Phase I trial in healthy human volunteers is expected to begin in Oxford *in Sept this year*. Recruitment of healthy volunteers has not yet begun but anyone who is interested in taking part can register with Oxford Vaccine Centres Healthy Volunteers database *here* to receive regular updates. Participants in the Phase I trial need to be:
A healthy person aged 18-50 years old.

A UK resident living within striking distance of Oxford.

Willing  to  make  a  time  commitment  of  5-10 morning  visits  to  the  Jenner  Institute  over  a  6 month period.
_​New drug certifying is long and intricate process, so we have to be patient and full of willingness to tolerate inevitable delays.


----------



## Bufford

Interesting, and provides hope.  So far all treatments have either failed or come up short with side effects that are worse than the scourge itself.


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## JMC

irishgal said:


> Until today, I had no idea that those copycat websites redirected to the CCFA. I don't know who purchased these, but I can tell you they were purchased on August 20, 2015, four days after the Chicago symposium. Both the .org and the .com redirect to the CCFA home page - where there is no MAP content. I can only speculate, as Mark does, why anyone would do this. Our website is small, barely funded and in no way can take any significant portion of traffic away from the CCFA behemoth. Our sole purpose is to put the research on MAP/mycobacteria out to patients and let them learn on their own. For a treatment that currently has a Phase 3 FDA trial going with almost 90 centers worldwide (RedHill) I'm actually amazed CCFA hasn't said anything about AMAT. I won't speculate publically, but as is the theme of our true site, will let you come to your own conclusions after hearing the facts.


Wow, this is outrageous!  I would be very interested if someone could trace _who _had bought those domain names.


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## irishgal

JMC said:


> Wow, this is outrageous!  I would be very interested if someone could trace _who _had bought those domain names.


Me too! We're working on it, but the purchaser name is marked as private, so short of illegal hacking, which I won't do, we may never know. I put in a good faith call to the CCFA HQ to inquire, and they said they'd get back to me. If I find out any more, I'll let you know.

Mark - Wish I had met you and your wife at the symposium! It was certainly a great day. Maybe someday there will be another.


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## Scared1

Hi Irishgal,
This is so great to see that AMAT therapy is working for you - sorry if you already answered this question elsewhere, but what were your original biopsy (i.e. did you have any granulomas) and colonoscopy results? Do you have a severe case of crohn's and how long did you start seeing benefits when on the AMAT therapy - symptom-wise and colonoscopy/biopsy wise? Thank you! Looking forward to your reply


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## irishgal

Hi Scared - no problem! I was diagnosed at 14 and was pretty bad until 19 when I learned to not eat a whole lot and take prednisone to control flares. I skated through my 20's without anything too horrible, but I was always underweight, had diarrhea and was cold all the time. My stomach hurt a lot at times. Then I had an emergency resection at 31, then three successive operations by the time I was 39 and it got worse and worse. I developed a rare metastatic skin presentation, could barely keep on any weight, felt miserable most of the time and developed pretty severe proctitis with a small fistula that would come and go. I was on Pentasa, then Lialda, then Humira, and finally Remicade - all of which eventually failed. I did all I could with diet, supplements, and lifestyle things like yoda, all of which helped keep me alive, but none of which healed. That was when I went on AMAT.

I have had classic terminal ileal CD presentation, with granulomatous accordian inflammation and strictures. Most of that was taken out in the resection, but I think it was all reactivating again. My colonoscopies would show non cancerous polyps and some slight inflammation overall. The proctitis was 5 inches of moderate to severe CD inflammation and I was losing the battle against the skin presentation rapidly. That biopsy showed granulomatous inflammation as well.

Weeks before AMAT, I had a colonoscopy which showed the above and also sent blood to John Aitken which showed heavy mycobacterial infection. I was so sick on AMAT for about a week or two, but then my body adjusted to the meds and I got better little by little. By 6 weeks I felt pretty good. I had more energy, wasn't cold anymore and had even gained a few pounds. The skin stuff and proctitis went away and healed before my eyes. Things just stopped hurting. By 3-4 months, I knew my body well enough to know that it had healed a great deal inside. Gluten didn't bother my stomach anymore, which it always used to. I had gained 20 much needed pounds. The bowel urgency was gone and I had less trips to the bathroom. I felt amazing.

It took about 6 months for the diarrhea (which I constantly had for 25 years) to go away. I had a repeat colonoscopy at one year on AMAT and it showed no disease, and complete histological healing. Only one very small pseudo polyp. Also, my blood sample at 12 months to John showed very few mycobacteria that were mainly in the dormant state. 

I've been told that my response was faster than most, which take closer to 3-4 months to see what I saw in 6 weeks. I was quite sick when I started AMAT, and I'm so glad I did. Best of luck to you on your journey!


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## irishgal

Scared - sorry I didn't read the entire thread first! I see you're a biochemist. That's awesome. You'll get a lot more of the research than most. I have an undergrad in Biology, and an infection of some sort that my body continually tried to fight always made sense to me, especially since I responded so well to Flagyl and not to much else! And yes, I think that CD is a syndrome caused by a variety of causes/expressions, but I think the majority is the mycobacterial variety. You know mycobacteria are proficient mutators. CD is much closer to TB, leprosy and Johne's disease than an actual autoimmune disease. A bacterial pathogen makes sense.


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## xeridea

Zim said:


> In the *latest newsletter* MAP vaccine team stated this:
> 
> _A Phase I trial in healthy human volunteers is expected to begin in Oxford *in Sept this year*. Recruitment of healthy volunteers has not yet begun but anyone who is interested in taking part can register with Oxford Vaccine Centres Healthy Volunteers database *here* to receive regular updates. Participants in the Phase I trial need to be:
> A healthy person aged 18-50 years old.
> 
> A UK resident living within striking distance of Oxford.
> 
> Willing  to  make  a  time  commitment  of  5-10 morning  visits  to  the  Jenner  Institute  over  a  6 month period.
> _​New drug certifying is long and intricate process, so we have to be patient and full of willingness to tolerate inevitable delays.


Yeah, the drug approval path is such a long and winding road. Too bad the whole CMV effort is so dependent on crowd-funding. I hope they don't get left behind as other, better-funded research outpaces them.


----------



## JMC

xeridea said:


> Yeah, the drug approval path is such a long and winding road. Too bad the whole CMV effort is so dependent on crowd-funding. I hope they don't get left behind as other, better-funded research outpaces them.


No, the vaccine is not crowd funded, it is owned by HAV Vaccines Ltd and funded by private investors. The development of the MAP Test is being crowd funded.


----------



## Scared1

Thank you Irishgal for your all your feedback! It is so helpful! My husband was recently diagnosed - he has no symptoms at all, so I wanted to give him some peace of mind that if down the line for some reason he has symptoms, then hopefully by then, the Redhill 104 Trial would have passed and he can go on that 

Omg - if you see how much reading I have done - I think I have OCD, I check updated and articles every single day and read research and everything I read makes me think bacterial infection. I also have a Master's in Chemistry, with a minor in Virology. And worked many years in a lab before I moved on to Engineering (don't ask me how, been going to school for a long time). But Crohn's just behaves too differently from autoimmune disease and the presentation of itself symptom wise and from a medical standpoint points to pathogen with an immune susceptibility. I am hoping this next decade brings about alot of new IBD discoveries and I am really optimisitic (something that is never the case) about a cure for this Crohn's or a vast majority of it. I told my husband - if there is a good time to be diagnosed, its now


----------



## irishgal

That's great your husband doesn't have symptoms. Ride that as long as possible! Yes, looks like we may see a cure eventually. The disease certainly could be explained by a sneaky pathogen. I'll PM you.


----------



## InstantCoffee

durwardian said:


> Sorry to hear that. But, how is that diagnosing a disease? I felt that if I got better on the medications, perhaps they were right. But I tried them it did nothing, which further proves that it was not the problem.
> Only years later, doing my own experimentation and research, and after 7 surgeries to fix the problems going on in there, have I found relief and answers.
> For me if I adjust my serotonin uptake, not SSRI's, but SSRE, so enhance it and get rid of the excess serotonin, do all symptoms stop and I am healing. I did further research and testing on myself, and found two gene things that make sense, but could be circumstance. One is that I have multiple GAD mutations in my DNA, COMT mutation, and MAO-A. So I can't put the brakes on the neurotransmitters and nerves just get irritated, causing the pain and cramps, damage, etc. By removing the serotonin, my bowels returned to normal and the cramps, runs, damage has stopped. Bacteria in the bowels can produce serotonin without our help, so diet and such does nothing to change some of that. SSRI's just make things worse, we don't want to block it, we don't want to increase production of it.
> http://www.nature.com/ctg/journal/v3/n4/full/ctg20128a.html
> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3977648/
> Google what serotonin does in the body and why.... my Gastro doctor had no clue and never heard of it, my rheumatology doctor the same. But it also causes Osteoporosis
> http://www.webmd.com/osteoporosis/news/20100205/serotonin-may-be-a-key-to-treat-osteoporosis
> So, back to the basics. They don't look, they don't diagnose, they don't try. They throw horrible drugs at people and make things better by blocking your immune system?
> There is something seriously wrong with this picture. Don't put his health at risk, but try things and pay attention to what works and what doesn't.
> I think that the bacteria are out of balance perhaps, causing more serotonin, this is the damage we see. Sometimes there are connective tissue diseases that are to blame. Sometimes it is another form of psoriasis and such. So don't be hell bent on this solution as yours. If it is something else, like an immune reaction, the treatment will be different.
> One question, does he get rather grumpy, or mental roller coaster. Seem irritable a lot about little things? Do the symptoms come and go or are they constant?


This actually makes a lot of sense with what I've been reading.

Isn't gut serotonin produced by the intestinal bacteria?

If so that would explain why AMAT and oregano oil work for some people. If you reduce the serotonin-producing bacteria you reduce the concentration of serotonin in the gut so there's less build up and the OCT transports could keep up.

This is purely postulating though, I'm still not very well versed on the subject of gut serotonin, I'm trying to learn more, but I wasn't aware that too much was a bad thing which fills in some of the missing links I had regarding it.


----------



## JMC

Scared1 said:


> But Crohn's just behaves too differently from autoimmune disease and the presentation of itself symptom wise and from a medical standpoint points to pathogen with an immune susceptibility.


I am also convinced that is correct.  The single biggest challenge at the moment is for medical science to remember what it once knew, Crohn's looks like and behaves like a mycobacterial infection.  In 1932 Burrill Crohn differentiated the disease from intestinal Tuberculosis and believed it was another mycobacterial infection, probably MAP.  Only later, in the 1960s did the autoimmune theory arrive when the pathogen could not be identified.  That science got lost for decades with wild goose chases looking at autoimmune diseases and latterly aberrant reactions to the "normal" gut microbiota is a reflection of one thing; a lack of the right diagnostic tools to identify the pathogen.  I am quite certain, if the pathogen can be unequivocally identified, the antibiotics or vaccine(s) needed to kill it will be developed quite quickly.


----------



## Scared1

JMC said:


> I am also convinced that is correct.  The single biggest challenge at the moment is for medical science to remember what it once knew, Crohn's looks like and behaves like a mycobacterial infection.  In 1932 Burrill Crohn differentiated the disease from intestinal Tuberculosis and believed it was another mycobacterial infection, probably MAP.  Only later, in the 1960s did the autoimmune theory arrive when the pathogen could not be identified.  That science got lost for decades with wild goose chases looking at autoimmune diseases and latterly aberrant reactions to the "normal" gut microbiota is a reflection of one thing; a lack of the right diagnostic tools to identify the pathogen.  I am quite certain, if the pathogen can be unequivocally identified, the antibiotics or vaccine(s) needed to kill it will be developed quite quickly.


I also found that strange - "let's test all these infections, and if none of them pass then its your body attacking yourself." I am hoping we shall see soon in the near future. If this redhill study shows that AMAT therapy works, then I think the idea will be more readily accepted by GI's, especially here in the states. If it doesn't, then I think that is going to be a big blow to the MAP concept until the vaccine and test come through with further data. We will see the outcome of this within the next year, which is great and I am waiting anxiously in the meantime


----------



## irishgal

Scared1 said:


> I also found that strange - "let's test all these infections, and if none of them pass then its your body attacking yourself." I am hoping we shall see soon in the near future.


This has happened throughout history repeatedly. The diagnostic tools are not advanced enough to identify the pathogen, so it must be something else. Poverty, bad air, God's wrath, too much stomach acid. TB, Cholera, leprosy, H. pylori. 

We'll get there eventually.


----------



## JMC

irishgal said:


> This has happened throughout history repeatedly. The diagnostic tools are not advanced enough to identify the pathogen, so it must be something else. Poverty, bad air, God's wrath, too much stomach acid. TB, Cholera, leprosy, H. pylori.


Yes, the more I read, the more I see the same theme over and over.  Why does this happen?  Often because treatments that do not cure make the most money.  I really think we have a huge and fundamental problem with medicine at present when it is controlled by companies that are optimised to make the most money, not make the most people healthy.


----------



## Mattie

I'd really welcome your opinions please. Given the choice between infliximab and AMAT, which would you choose, and why?


----------



## Scared1

http://www.pasadenanow.com/main/cal...vered-a-cause-of-crohns-disease/#.Vy4DnYQrKM8

Very interesting article - published today. Focuses on the possible use of probiotics in the future - goes back to the immune-facilitated theory that people who are susceptible based on genetic alternations of identified crohn's "genes" tend to handle bacteria differently and so, perhaps tailored treatments for bacteria in the gut can help.


----------



## JMC

Mattie said:


> I'd really welcome your opinions please. Given the choice between infliximab and AMAT, which would you choose, and why?


The key is finding an open minded doctor who is willing to try more than the usual recipe of drugs and can prescribe AMAT.  Infliximab has anti-MAP properties too, so a combination of treatments may be necessary:
http://crohnsmapvaccine.com/faq/man...he-disease-get-worse-with-immunosuppressants/

Bottom line, you need a good doctor, not advice on a web forum.


----------



## Bufford

I do not believe for a moment that Crohn's is related to immune disorders.  For if it did I should be having all sorts of problems with getting colds, flu and other pathogens. However, I don't catch 'bugs' very easily and my body is resiliant when I do, or when I get lacerations.  
The problem with the medical industry, is that too much emphasis is placed on making profits.  How can treatments realistically costs thousands of dollars per dose.  Remicade is a good example of an overpriced treatment than made me very sick, and has taken months to get out of my system.
The medical system needs to stop playing the same old tune to the same old beat.  They need to explore other avenues to the problem.  I for one believe it is some kind of a bug and it has similar qualities to those such as Lyme's disease which is another that does not get the attention it needs.


----------



## Mattie

Thanks for replying JMC.  I understand what you are saying. Fortunately I am in the position of having a good GI who is open to the idea of AMAT. The choice is mine, AMAT or biologics and I just would have liked to gather other people's opinions of what they would do under similar circumstances.


----------



## Scared1

Mattie said:


> Thanks for replying JMC.  I understand what you are saying. Fortunately I am in the position of having a good GI who is open to the idea of AMAT. The choice is mine, AMAT or biologics and I just would have liked to gather other people's opinions of what they would do under similar circumstances.


Hi Mattie, I don't have crohn's but my husband was diagnosed. Honestly, I would want him to get tests for MAP first then if positive, I would want him to try AMAT be because in my mind, what if he is one of those people that has success? I am not a GI and I do not know your particular situation, but for me I would give it a shot.


----------



## Mattie

Thanks Scared!  Much appreciated.


----------



## irishgal

Mattie - I initially chose Remicade (and everything else) because that's what my doc said I should do, and I trusted her. It worked for about 6 months, and then didn't. That's when I went to AMAT which totally made me better. So in my individual case, maybe it would have been wise to do AMAT first, but at that point I had never heard of it so it wasn't really a choice. Also, I think being on Remicade just prior to starting AMAT made the AMAT work better. Just a hunch though.

Definitly JMC gives sound advice. You need to talk to your doc and see which treatment is best for you, so any thought I have should not be considered above the opinion of your doc. I think if you get the MAP test and you're positive, that would lend towards AMAT. Another thing to consider is that AMAT may work more effectively in treatment naive patients. Dr. Borody has been saying that a shorter course is needed to clear the pathogen when used as a first line therapy, though again, it's not been fully trialed. Nice that your doc is so open minded! If you want to PM me his name, I can add him to the private list I keep for patients who email the site asking about a doc. 

I wish you huge success, no matter which you choose!


----------



## Mattie

Thank you so much Irishgal. Much appreciated!


----------



## Scared1

Hi Irishgal,
Do you have any of those doctors in Michigan? Would be awesome if you did


----------



## Scared1

http://www.fiercebiotech.com/biotech/nestlé-health-science-leads-16-5m-enterome-round

Also just came out - literally attempting to remove the opportunistic pathogen e coli from the gut thought to cause inflammation in annimmune susceptible person - with this much money being flung at it, how can people deny the implications of a pathogen being the trigger?


----------



## JMC

Scared1 said:


> Hi Irishgal,
> Do you have any of those doctors in Michigan? Would be awesome if you did


There is a fairly limited list of AMAT doctors here


----------



## irishgal

Scared - I will PM you this evening. I think I may have some prospects for you, though nothing confirmed by a patient in MI. Sorry for the late response. It's been crazy here!


----------



## irishgal

Just as a follow up on my previous post in this thread about the copycat websites to The Crohn's Infection which redirect to the CCFA. I spoke to the CCFA main branch today, and they said they investigated my issue and said they did not purchase those copycat domain names, and that this was not done by someone in their organization. 

For accuracy's sake, wanted to make sure I followed up since I know the CCFA does good for a lot of people, so didn't want to accuse them of something they did not do. They said it must have been a third party independent of their direction.


----------



## Scared1

irishgal said:


> Just as a follow up on my previous post in this thread about the copycat websites to The Crohn's Infection which redirect to the CCFA. I spoke to the CCFA main branch today, and they said they investigated my issue and said they did not purchase those copycat domain names, and that this was not done by someone in their organization. <br />
> <br />
> For accuracy's sake, wanted to make sure I followed up since I know the CCFA does good for a lot of people, so didn't want to accuse them of something they did not do. They said it must have been a third party independent of their direction.


<br />
<br />
Thank you irish gal! Why would anyone do that? I mean, if this can cure 1-2 people, why not? I am positive we are going to see many different types of treatments emerge that may very well cure different variations of the disease - why would anyone want to hinder that if it can alleviate someones suffering? I hope they can find out who did that!


----------



## MarkB

irishgal said:


> Just as a follow up on my previous post in this thread about the copycat websites to The Crohn's Infection which redirect to the CCFA. I spoke to the CCFA main branch today, and they said they investigated my issue and said they did not purchase those copycat domain names, and that this was not done by someone in their organization.
> 
> For accuracy's sake, wanted to make sure I followed up since I know the CCFA does good for a lot of people, so didn't want to accuse them of something they did not do. They said it must have been a third party independent of their direction.


Yes, thank you. And I wouldn't expect CCFA to stoop to such tactics.  But it's puzzling who and why someone would actively try to obfuscate, or redirect internet searches.

The evidence that MAP causes Crohns is solid, and the last thing we need is folks steering people away from web sites that inform people about the known cause of this devastating disease, and it's potential cures.


----------



## irishgal

Scared1 said:


> Thank you irish gal! Why would anyone do that? I mean, if this can cure 1-2 people, why not? I am positive we are going to see many different types of treatments emerge that may very well cure different variations of the disease - why would anyone want to hinder that if it can alleviate someones suffering? I hope they can find out who did that!


Wish I had a better answer for you! Truly, I'm at a loss as well. No idea who or why, but I appreciate the support.


----------



## Scared1

So, I was hoping you guys can give me some advice - my husband retook the fecal calprotectin test and his results were normal (129 which is under 162 - using the Quest Diagnostics level). He still has no symptoms and has only been taking Lialda for 3 weeks. So I asked the GI - do you think it can not be crohn's? He's like the distribution of the inflammation (TI and Rectum although very mild) favors Crohn's but time will tell. He said lets do a MRE in September but let him stay on the Lialda, maybe that is what put him in remission. Does that sound right to you guys? I would rather him try AMAT therapy instead of just keeping him on Lialda - do you think testing him for MAP would be a good move for now or wait till after the MRE? Thank you!


----------



## xeridea

irishgal said:


> Wish I had a better answer for you! Truly, I'm at a loss as well. No idea who or why, but I appreciate the support.


It's possible someone is just cyber-squatting and re-directing to CCFA so the domain name gets parked at reputable site in the short term. 

Think of it, if MAP or AIEC prove out to be the culprit and Crohn's becomes re-classified as an infection, any domain with these terms will have some market value. We'll have some pretty good indication on the infection theory within a few years as the CMV/RedHill/Qu trials publish. So whoever's got this domain is only on the hook for maybe three years. A couple hundred dollar bet on registration fees at most.

If you already have a contact at CCFA, see if they are willing to contact the registrar Wild West Domains in Scottsdale, AZ (I think abuse@wildwestdomains.com will work). Maybe they're willing to assert that an unauthorized re-direct is happening and hurting their image or something, and get the contact information for the fake site. And maybe they'll share that contact information with you if it's disclosed to them.

But I suspect whoever's done this is a visitor on this forum and follows these threads. So don't be surprised if they shift strategy once they feel the heat from you.


----------



## MarkB

My $0.02:  It sounds weird to be prescribed anything if he's asymptomatic. Maybe the logic is "let's treat symptoms so it doesn't get worse."  Lialda -- quick google search suggests it's an Ulcerative Colitis drug. Crohn's not mentioned in the first couple web hits I looked at. Seems an odd choice, but goal seems to be reducing the inflammation.  Couldn't hurt to test for MAP, but in my personal opinion, if he's asymptomatic it seems early to be going down the road of any therapy.  Keep an eye on it, and maybe look into the literature around diet and Crohn's -- read up on diet threads, like specific carbohydrate diet, paleo-diet, etc.  If he can minimize or stave off Crohn's with diet, might make more sense than turning to medical therapies of any kind at this stage of his possible Crohn's.    

This forum is full of patients and family members of patients who have suffered much: severe abdominal pain, diarrhea, vomiting, surgical resection of parts of their bowels, adverse side effects from the various meds they're on, etc.  I think you and your husband should count your blessings that obvious symptoms haven't presented...and hope that they stay that way.  You can continue to research, including dietary alternatives, and maybe choose medical alternatives that have minimal side effects.  And you can perhaps research where you might turn to if symptoms do present themselves and become severe.  Be mindful of the more severe symptoms, and don't be afraid to engage the medical system if an acute GI flare-up occurs.  

AMAT as not as simple as taking amoxicillin for a week to cure an ear ache.  It's a pretty hard core anti-microbial therapy for extended time period; I personally wouldn't go there unless I had actual symptoms that I was trying to cure.  With a bit of luck maybe we'll have a vaccine someday, and the decision to treat for MAP early (i.e., with no acute symptoms) would get a lot easier.  But we're not there yet. 

Good luck to you and your husband!  Again, the above ramblings are just my $0.02 as a semi-educated lay person.  I'm not a doctor, and I don't play one on TV.


----------



## Sandrine

irishgal said:


> Mattie - I initially chose Remicade (and everything else) because that's what my doc said I should do, and I trusted her. It worked for about 6 months, and then didn't. That's when I went to AMAT which totally made me better. So in my individual case, maybe it would have been wise to do AMAT first, but at that point I had never heard of it so it wasn't really a choice. Also, I think being on Remicade just prior to starting AMAT made the AMAT work better. Just a hunch though.
> 
> Definitly JMC gives sound advice. You need to talk to your doc and see which treatment is best for you, so any thought I have should not be considered above the opinion of your doc. I think if you get the MAP test and you're positive, that would lend towards AMAT. Another thing to consider is that AMAT may work more effectively in treatment naive patients. Dr. Borody has been saying that a shorter course is needed to clear the pathogen when used as a first line therapy, though again, it's not been fully trialed. Nice that your doc is so open minded! If you want to PM me his name, I can add him to the private list I keep for patients who email the site asking about a doc.
> 
> I wish you huge success, no matter which you choose!



Hi 
Well I will be forever grateful to have the name of a doctor who will be willing to treat my almost 14 year old
Daughter with AMAT 
She has had Crohn's disease since the age of 10 1/2 
She has been on Remicade, methotrexate, Imuran, Humira, Stellara and obviously Cortisone at 40 mg 
She is going to start entyvio this Week hopefully 

She is always in pain, extremely tired, bones and every body part hurts, huge relentless headaches and her doctor doesn't know what to do 
And he has recently been very sick himself so it's his resident, very nice, who is taking over for now 
My husband is also a physician and has read so much but has lost his capabilities to fight 
We feel so helpless and are always cautious about how we talk to the dr or what we say because there aren't many paediatrics gastroenterologist in our area and her doctor is renown in this field.

We cry all the time because of how much pain she is, how she feels, how she is set aside by not going to school, how everything has changed and how our two other daughters see our family juggling all 
this. We try our best but the pain shines too much unfortunately on Many occasions...

This new therapy seems promising and I am sure my daughter caught a bug in an Olympic size pool and started her diarrhea that same night and didn't stop since 
I've repeated many times that there must be a link and this Amat seems logical 
My worry though is that the last two times my daughter had to take an antibiotic, she rapidly developed clostridium difficile 
So I wonder how this therapy could be administered over a long period

PLEASE , anyone who can direct me to a gold hearted doctor who will have pity on what pain she goes thru every day for the last 3 1/2 years 
I would bless you for ever 

Thank you all


----------



## MarkB

irishgal said:


> ...Another thing to consider is that AMAT may work more effectively in treatment naive patients. Dr. Borody has been saying that a shorter course is needed to clear the pathogen when used as a first line therapy, though again, it's not been fully trialed. ...


I missed that first time through.  Good info.  Is there a published reference that makes this point, or did you pick this up from a conference?


----------



## Scared1

MarkB said:


> My $0.02:  It sounds weird to be prescribed anything if he's asymptomatic. Maybe the logic is "let's treat symptoms so it doesn't get worse."  Lialda -- quick google search suggests it's an Ulcerative Colitis drug. Crohn's not mentioned in the first couple web hits I looked at. Seems an odd choice, but goal seems to be reducing the inflammation.  Couldn't hurt to test for MAP, but in my personal opinion, if he's asymptomatic it seems early to be going down the road of any therapy.  Keep an eye on it, and maybe look into the literature around diet and Crohn's -- read up on diet threads, like specific carbohydrate diet, paleo-diet, etc.  If he can minimize or stave off Crohn's with diet, might make more sense than turning to medical therapies of any kind at this stage of his possible Crohn's.
> 
> This forum is full of patients and family members of patients who have suffered much: severe abdominal pain, diarrhea, vomiting, surgical resection of parts of their bowels, adverse side effects from the various meds they're on, etc.  I think you and your husband should count your blessings that obvious symptoms haven't presented...and hope that they stay that way.  You can continue to research, including dietary alternatives, and maybe choose medical alternatives that have minimal side effects.  And you can perhaps research where you might turn to if symptoms do present themselves and become severe.  Be mindful of the more severe symptoms, and don't be afraid to engage the medical system if an acute GI flare-up occurs.
> 
> AMAT as not as simple as taking amoxicillin for a week to cure an ear ache.  It's a pretty hard core anti-microbial therapy for extended time period; I personally wouldn't go there unless I had actual symptoms that I was trying to cure.  With a bit of luck maybe we'll have a vaccine someday, and the decision to treat for MAP early (i.e., with no acute symptoms) would get a lot easier.  But we're not there yet.
> 
> Good luck to you and your husband!  Again, the above ramblings are just my $0.02 as a semi-educated lay person.  I'm not a doctor, and I don't play one on TV.


Thank you for the feedback Mark and I see where you are coming from...

My thing is there are many people that I have read on the forum that are asymptomatic and still have active Crohn's, and not treating the underlying inflammation until it get's worse is not a good game plan - even the doctor's my husband is seeing now noted that as well. Because then, leave it untreated too long, then you may have to try harder meds - something I want to avoid if at all possible. He may stay asymptomatic for a very very long time or his whole life (I read about that sometimes happening), so would I just leave it and not be proactive regarding the possible treatments down the line and wait? I can't wait for that to happen and would like to be prepared. With that said - after reading so many heartbreaking - and I do mean heartbreaking accounts of suffering on this forum, I do count my husband very lucky but feel real sadness for these people, and who knows if he is not going to be one of them someday? 

I also know that the AMAT therapy is intensive but my thought was if we started it now, we keep the MAP if that is his cause in remission as long as possible....


----------



## MarkB

Scared1 said:


> ... and not treating the underlying inflammation until it get's worse is not a good game plan - even the doctor's my husband is seeing now noted that as well. ...


Good point. I note Irishgal's post, re. Dr. Borody reached a similar conclusion.  He's a real doctor!  Good luck!


----------



## Scared1

MarkB said:


> Good point. I note Irishgal's post, re. Dr. Borody reached a similar conclusion.  He's a real doctor!  Good luck!


I am hoping maybe once I deliver (I am 8 months pregnant by the way, so this Crohn's news really messed me up these past few months), to get him tested for MAP and to do another colonscopy to get more definitive answers...I am hoping that within 20 years, at LEAST a cause of this will be identified, so maybe MAP, AEIC, etc... I am willing to bet there are at least 10 causes to the Crohn's we see today - and here is to hoping that we are on the brinks of a cure within a decade or so...

I actually was looking up the peptic ulcer timeline for when they associated H.pylor and noticed this part: 

1984
A paper describing Marshall and Warren's results is accepted by the Gastroenterological Society of Australia for presentation.[38]
*Marshall and Goodwin attempt to infect pigs with H. pylori in an attempt to demonstrate that it causes PUD. The experiment fails.[38]
Marshall and Warren's paper is accepted by The Lancet in May and published in June. Many reviewers dislike the paper.[38]*
McNulty and Watson are able to reproduce Marshall and Warren's results.[41]
June 12: Marshall intentionally consumes H. pylori and becomes ill. He takes antibiotics and is relieved of his symptoms.[38]
The National Health and Medical Research Council of Australia fully funds Marshall's research into H. pylori.[38]
A study is published in China about the effectiveness of treating PUD with an antibacterial agent.[31]
July 31: *The New York Times publishes an article by its medical correspondent Dr. Lawrence K. Altman on the possible link between H. pylori and PUD.[42] He states in 2002, "I’ve never seen the medical community more defensive or more critical of a story" since he joined the newspaper in 1969.[43]*

Sounds familiar doesn't it? Even if my husband doesn't have Crohn's - who knows, even if he stays at this level, I pray after reading all of the sufferers that this horrible disease will be cured...because I feel like the medical community (not all) has failed the patients in this case. Think about it - all this money flinging around, they could have resolved this MAP issue by now, it shouldn't have taken 10 years to develop a preliminary vaccine due to lack of funding, for example.  But with the microbiome project (so far, I totaled >50 million being spent), hopefully this will help in some way.

If anything within the next 5 years, we will know:
2016: Redhill Study - AMAT worth it or not? 
     - Yes? Then more GI's will prescribe and more attention on MAP.
     - No? More resistence to MAP theory
2017-2018: MAP Vaccine Human Trials
     - Yes? HUGEEEEEEEEEEEEEEEEEEEEEEEEE NEWS
     - No? More focus will be made on the microbiome and other causes...


You get my gist - point is, a lot to look forward to in these few years. So at this rate, imagine in 10 years?


----------



## InstantCoffee

Scared1 said:


> I am hoping maybe once I deliver (I am 8 months pregnant by the way, so this Crohn's news really messed me up these past few months), to get him tested for MAP and to do another colonscopy to get more definitive answers...I am hoping that within 20 years, at LEAST a cause of this will be identified, so maybe MAP, AEIC, etc... I am willing to bet there are at least 10 causes to the Crohn's we see today - and here is to hoping that we are on the brinks of a cure within a decade or so...
> 
> I actually was looking up the peptic ulcer timeline for when they associated H.pylor and noticed this part:
> 
> 1984
> A paper describing Marshall and Warren's results is accepted by the Gastroenterological Society of Australia for presentation.[38]
> *Marshall and Goodwin attempt to infect pigs with H. pylori in an attempt to demonstrate that it causes PUD. The experiment fails.[38]
> Marshall and Warren's paper is accepted by The Lancet in May and published in June. Many reviewers dislike the paper.[38]*
> McNulty and Watson are able to reproduce Marshall and Warren's results.[41]
> June 12: Marshall intentionally consumes H. pylori and becomes ill. He takes antibiotics and is relieved of his symptoms.[38]
> The National Health and Medical Research Council of Australia fully funds Marshall's research into H. pylori.[38]
> A study is published in China about the effectiveness of treating PUD with an antibacterial agent.[31]
> July 31: *The New York Times publishes an article by its medical correspondent Dr. Lawrence K. Altman on the possible link between H. pylori and PUD.[42] He states in 2002, "I’ve never seen the medical community more defensive or more critical of a story" since he joined the newspaper in 1969.[43]*
> 
> Sounds familiar doesn't it? Even if my husband doesn't have Crohn's - who knows, even if he stays at this level, I pray after reading all of the sufferers that this horrible disease will be cured...because I feel like the medical community (not all) has failed the patients in this case. Think about it - all this money flinging around, they could have resolved this MAP issue by now, it shouldn't have taken 10 years to develop a preliminary vaccine due to lack of funding, for example.  But with the microbiome project (so far, I totaled >50 million being spent), hopefully this will help in some way.
> 
> If anything within the next 5 years, we will know:
> 2016: Redhill Study - AMAT worth it or not?
> - Yes? Then more GI's will prescribe and more attention on MAP.
> - No? More resistence to MAP theory
> 2017-2018: MAP Vaccine Human Trials
> - Yes? HUGEEEEEEEEEEEEEEEEEEEEEEEEE NEWS
> - No? More focus will be made on the microbiome and other causes...
> 
> 
> You get my gist - point is, a lot to look forward to in these few years. So at this rate, imagine in 10 years?


There's still problems implicating MAP, like that many people present with and have consumed MAP without becoming symptomatic. People at higher risk group (countries that consume more dairy, dairy farmers etc.) for being exposed to MAP do not present with a higher incidence of IBD than those that do not.


----------



## Scared1

InstantCoffee said:


> There's still problems implicating MAP, like that many people present with and have consumed MAP without becoming symptomatic. People at higher risk group (countries that consume more dairy, dairy farmers etc.) for being exposed to MAP do not present with a higher incidence of IBD than those that do not.


Of course - I agree, based on what I am reading, it has to do with the bodies abilities to clear those bacteria, and immune susceptible individuals may not be able to clear it as other, hence the genetic effect. I also read some articles regarding Aiec - same concept. And not everyone who has Crohn's has this same etiology of it being caused by MAp - I think there is more acceptance now that there are multiple causes which are Crohn's, and this may be one of them...


----------



## MarkB

InstantCoffee said:


> There's still problems implicating MAP, like that many people present with and have consumed MAP without becoming symptomatic. People at higher risk group (countries that consume more dairy, dairy farmers etc.) for being exposed to MAP do not present with a higher incidence of IBD than those that do not.


A few thoughts on this...

If MAP is indeed scattered throughout our food system, then it makes sense that people who do not have Crohn's are also exposed, and that MAP could be detected in them. For presence of MAP in milk & cattle, see reviews by John Hermon-Taylor (http://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-1-15 -- full paper is freely accessible) and M. Collins (http://www.sciencedirect.com/science/article/pii/S0022030297763215 -- abstract accessible).   

Genetics play a role. Jostins and others' landmark genetics - IBD paper (http://www.nature.com/nature/journal/v491/n7422/full/nature11582.html) concluded: "We also observe considerable overlap between susceptibility loci for IBD and mycobacterial infection. Gene co-expression network analysis emphasizes this relationship, with pathways shared between host responses to mycobacteria and those predisposing to IBD."  So, if you have genetic susceptibility to Crohn's, you also are susceptible to MAP infection. 

MAP is more prevalent in people with Crohn's than healthy individuals without Crohn's. The science is compelling:  Feller and others published a landmark meta-analysis of 28 peer-reviewed studies on detection of MAP in Crohn's versus healthy populations (ftp://s173-183-201-52.ab.hsia.telus.net/AgroMediaDocs/JDrefs/LID7_607.pdf).  Using the more reliable PCR methodology, the aggregate odds ratio of MAP detection in Crohnies versus non-Crohnies was about 7.  Meaning, 7 times more likely to detect MAP in Crohn's patients than non-Crohn's patients.  For the less accurate, less sensitive ELISA test, the odds ratio was still ~ 1.7x, so nearly twice as likely to detect MAP in Crohn's patients versus non-Crohn's.  In addition, I've heard anecdotally from Amy Hermon-Taylor, who claims that MAP numbers are low in non-Crohn's patients (where detected); high in Crohn's patients, but they see the numbers go down with anti-MAP therapy.  

In closing, a quote from John Hermon-Taylor's review paper (linked above): "An overwhelming balance of probability and Public health risk favours the conclusion that Mycobacterium avium subspecies paratuberculosis is also pathogenic for people. A two tier cooperative pathogenic mechanism is proposed in Crohn's disease..."


----------



## InstantCoffee

MarkB said:


> A few thoughts on this...
> 
> If MAP is indeed scattered throughout our food system, then it makes sense that people who do not have Crohn's are also exposed, and that MAP could be detected in them. For presence of MAP in milk & cattle, see reviews by John Hermon-Taylor (http://gutpathogens.biomedcentral.com/articles/10.1186/1757-4749-1-15 -- full paper is freely accessible) and M. Collins (http://www.sciencedirect.com/science/article/pii/S0022030297763215 -- abstract accessible).
> 
> Genetics play a role. Jostins and others' landmark genetics - IBD paper (http://www.nature.com/nature/journal/v491/n7422/full/nature11582.html) concluded: "We also observe considerable overlap between susceptibility loci for IBD and mycobacterial infection. Gene co-expression network analysis emphasizes this relationship, with pathways shared between host responses to mycobacteria and those predisposing to IBD."  So, if you have genetic susceptibility to Crohn's, you also are susceptible to MAP infection.
> 
> MAP is more prevalent in people with Crohn's than healthy individuals without Crohn's. The science is compelling:  Feller and others published a landmark meta-analysis of 28 peer-reviewed studies on detection of MAP in Crohn's versus healthy populations (ftp://s173-183-201-52.ab.hsia.telus.net/AgroMediaDocs/JDrefs/LID7_607.pdf).  Using the more reliable PCR methodology, the aggregate odds ratio of MAP detection in Crohnies versus non-Crohnies was about 7.  Meaning, 7 times more likely to detect MAP in Crohn's patients than non-Crohn's patients.  For the less accurate, less sensitive ELISA test, the odds ratio was still ~ 1.7x, so nearly twice as likely to detect MAP in Crohn's patients versus non-Crohn's.  In addition, I've heard anecdotally from Amy Hermon-Taylor, who claims that MAP numbers are low in non-Crohn's patients (where detected); high in Crohn's patients, but they see the numbers go down with anti-MAP therapy.
> 
> In closing, a quote from John Hermon-Taylor's review paper (linked above): "An overwhelming balance of probability and Public health risk favours the conclusion that Mycobacterium avium subspecies paratuberculosis is also pathogenic for people. A two tier cooperative pathogenic mechanism is proposed in Crohn's disease..."


Of course, my worry is still this. 
We know that OCTN transport proteins have been linked to Crohn's disease, these proteins are responsible for transport of neurotransmitters from the gut. Shut these down and you get serotonin toxicity in the gut.

What creates serotonin in the gut?

Bacteria.

What does AMAP therapy do? It kills bacteria indiscriminately. 

So what if the reason that we're susceptible to MAP is the deficient OCTN transport proteins that are shutting down serotonin transport, and the chain of inflammatory effects that come as a result making the intestines vulnerable to pathogenic species (seeing as we see more than just MAP being implicated, including AIEC and chronic bouts of c.diff in crohn's patients). This could suggest a general susceptibility to pathogenic bacteria, not just MAP. 

We're then back to treating symptoms instead of cause. 

I still think AMAP sounds better than biologics and steroids, even if this is the case, but it means we need to keep digging, and I fear that once we have a 'good enough' solution that will stop.


----------



## Zim

InstantCoffee said:


> People at higher risk group (countries that consume more dairy, dairy farmers etc.) for being exposed to MAP do not present with a higher incidence of IBD than those that do not.


It would be nice to see some evidence to claims like "countries that consume more dairy" "do not present with a higher incidence of IBD". 

I personally do see some correlation between Crohh's incidence and dairy consumption. It's not in concrete (nothing is this simple), but still: North America, Australia, Northern and Western Europe. 


World milk consumption map:








Crohn's incidence map:








Another Crohn's incidence map:


----------



## JMC

InstantCoffee said:


> There's still problems implicating MAP, like that many people present with and have consumed MAP without becoming symptomatic.


No, that isn't a problem, this is typical of mycobacterial infections like Tuberculosis and Leprosy where most people infected will be asymptomatic.  Yes, there is still a lot to be understood about why only some people develop symptoms, but it is not a reason to discount MAP as the cause of Crohn's.




InstantCoffee said:


> People at higher risk group (countries that consume more dairy, dairy farmers etc.) for being exposed to MAP do not present with a higher incidence of IBD than those that do not.


Not all exposure is the same.  Some people exposed will develop immunity.  All of this has been covered in detail, by for example, Tim Bull.


----------



## InstantCoffee

Zim said:


> It would be nice to see some evidence to claims like "countries that consume more dairy" "do not present with a higher incidence of IBD".
> 
> I personally do see some correlation between Crohh's incidence and dairy consumption. It's not in concrete (nothing is this simple), but still: North America, Australia, Northern and Western Europe.
> 
> 
> World milk consumption map:


Unfortunately the thread has been deleted, but a past member was a hobbyist researcher following leads that implicated sucralose and saccharins in Crohn's. 

This was his take on thet  matter. 



> Hi, Old Mike, sorry for the delay. I am in a vacation with my family with busy schedules and limited access to Internet. It had been a pleasure to have exchanged thoughts, ideas and information over the email, and thanks for your interest in my opinion on the possible link between Mycobacterium avium subsp. paratuberculosis (MAP) and IBD, especially Crohn’s disease (CD).
> 
> Not like saccharin and sucralose, MAP as the possible cause of Crohn’s disease had been suspected for about a century, with extensive studies by some researchers, especially in the last several decades. Despite that, the results remains highly controversial, largely because the conflicting “facts” in almost every aspects. To my knowledge, there is also a big discrepancy between the incidence of IBD and contamination of MAP in some countries. For instance, Sweden had been one of the countries with the highest incidence of IBD, including both CD and ulcerative colitis (UC), but MAP contamination had been extremely low (see Sternberg Lewerin S et al. Control of paratuberculosis in Sweden. Proceedings of the 9th International Colloquium on Paratuberculosis 2007, p. 319-323. http://www.paratuberculosis.info/web...ories/pdfs/274). Back to 1952, MAP had been included in the Swedish Epizootic Act (SFS 1999:657). According to this legislation any suspicion of MAP is notifiable for animal owners, veterinarians or other professionals with animal contact, regardless of the species of the animal. Moreover, it required the Swedish Board of Agriculture must investigate all suspect cases and take all necessary means to eradicate and prevent the spread of the infection, if confirmed. As the result, although there were a few sporadic cases of MAP infection in cattle since 1993, all the cases were directly or indirectly linked to the imported animals, with all cases being beef herds, but none in dairy herds. The negative finding of domestically originated MAP in the more than 1.5 million of cattle and about half a million of sheep all over the country suggested the extremely low, if not zero, MAP contamination in Sweden, despite the very high incidence of CD and UC seen in many cities in Sweden like Stockholm, Uppsala, Orebro, Malmo, and Gothenburg.
> 
> In addition, there were also many conflict results regarding other aspects on the suspected link between MAP and IBD. Although some studies (like the one in Forest Virginia) suspected that contamination of MAP in the pasteurized milk or the water supply may cause CD in human, other studies failed to show any increased risk for dairy farmers with a more direct and certain contact with MAP through the infected animals (Jones PH, et al. Crohn's disease in people exposed to clinical cases of bovine paratuberculosis. Epidemiol Infect 2006;134:49-56). Although study indeed found MAP in the lymph nodes of feral cats on the contaminated farm, they did not had the signs of IBD (Palmer MV et al. Isolation of Mycobacterium avium subsp paratuberculosis (Map) from feral cats on a dairy farm with Map-infected cattle. J Wildl 2005;41:629-35).
> 
> At beginning people were suspected a similar origin for both Johne’s disease in cattle and CD in humans as they both showed the obstructive damage near the end of the ileum. However, as shown in some of the recent studies, there was a shift of CD from the small intestine to large intestine over time and the involvement of only large intestine has become the main form for CD (the Crohn’s colitis). I suspected that IBD now would be more mimic the commonly seen IBD in pet dogs and cats rather than the Johne’s disease in cattle (Qin X. What is human inflammatory bowel disease (IBD) more like: Johne's disease in cattle or IBD in dogs and cats? Inflamm Bowel Dis. 2008 Jan;14(1):138). There were also many other fundamental differences between Johne’s disease and CD. For instance, large amounts of MAP can be found in the mucosa or feces of cattle with Johne’s disease, which can be transmitted to healthy herds; in contrast, the bacteria are hardly seen in the tissues and feces of patients with CD, and IBD in general is regarded as noncontiguous. Although studies showed higher rates of existence of MAP in gut tissue of CD patients by the high sensitive methods such as the PCR detection of the IS900 DNA segments, there are also increase in other bacteria such as Helicobacter spp., Listeria monocytogenes and Escherichia coli, suggesting this could be just reflected the weakening of gut barrier and increased gut permeability (Tiveljung A, et al. Presence of eubacteria in biopsies from Crohn's disease inflammatory lesions as determined by 16S rRNA gene-based PCR. J Med Microbiol 1999;48:263-8). Finding of viable MAP in patients with CD would be important evidence for the possible link. However, the more rigorous test organized by NIH failed to repeat and confirm these findings (Van Kruiningen HJ. Where are the weapons of mass destruction - the Mycobacterium paratuberculosis in Crohn's disease? J Crohns Colitis 2011;5:638-44). Therefore, it would be no surprising that there are many deep believers on both sides. Both sides think they hold enough scientific evidences. However, one thing would be true: one side must be wrong, along with the many “solid scientific facts”.


----------



## xeridea

InstantCoffee said:


> Unfortunately the thread has been deleted, but a past member was a hobbyist researcher following leads that implicated sucralose and saccharins in Crohn's.
> 
> This was his take on thet  matter.


I believe this is the thread you're talking about.

http://www.crohnsforum.com/showthread.php?t=36726


----------



## MarkB

InstantCoffee said:


> ...
> What does AMAP therapy do? It kills bacteria indiscriminately.
> ...


Yeah, doc we visited earlier this week (not a mainstream GI -- they won't even listen to anything MAP related) indicated that he ramps up anti-MAP therapy and runs it for ~6-8 weeks, then tries to restore healthy gut microbiome.  Rinse & repeat, basically, until they have MAP kicked.  Going on anti-MAP for long periods of time (years) is bad for microbiome, and hence health.  Some docs differ on this it appears.  

One positive implication for official recognition that MAP is a human pathogen: we would require agriculture take steps to keep that pathogen out of the food supply. Right now, we don't. 

Good stuff. Thanks for re-posting the useful discussion in this thread.


----------



## InstantCoffee

MarkB said:


> Yeah, doc we visited earlier this week (not a mainstream GI -- they won't even listen to anything MAP related) indicated that he ramps up anti-MAP therapy and runs it for ~6-8 weeks, then tries to restore healthy gut microbiome.  Rinse & repeat, basically, until they have MAP kicked.  Going on anti-MAP for long periods of time (years) is bad for microbiome, and hence health.  Some docs differ on this it appears.
> 
> One positive implication for official recognition that MAP is a human pathogen: we would require agriculture take steps to keep that pathogen out of the food supply. Right now, we don't.
> 
> Good stuff. Thanks for re-posting the useful discussion in this thread.


It is ridiculous that US is one of the only developed nations that doesn't try to control MAP / Johne's disease.


----------



## Zim

InstantCoffee said:


> It is ridiculous that US is one of the only developed nations that doesn't try to control MAP / Johne's disease.


Of course it doesn't - attempts to eradicate this kind of pathogens won't bring any money to any lobbyist group in Washington =) Even more - some of them would lose huge amount of their current profits. 

So be ready to hear "there is not enough evidence to prove that Map is a cause of Crohn’s disease or a significant human pathogen" mantra thousands more times, even after RHB-104 trial results promulgation and after publication of  long-awaited Hermon-Taylor's publication on new MAP blood/tissue test.


----------



## irishgal

MarkB - Here is the Prof. Borody pediatric study that talks about treatment naive patients. Only 10 treated, so a very small sample size. I know I saw a comment from him somewhere, maybe an interview, where he talks about how the therapy could especially benefit treatment naive patients, but I've read so much I can't find it now!
http://ir.redhillbio.com/releasedetail.cfm?releaseid=797192

Scared - Congrats! Wow, this must have been a rough month or so with all of this on your plate. Is this your first? I understand your dilemma. Do I preventatively treat with with big guns, especially if it's MAP, and hope you can kill most of it and stop any damage before he gets bad symptoms, or do you wait to see how long he can hold out feeling well and treat conservatively. That's really a decision you both have to make with your doc. At least he sounds pretty great! The only thing I could advise, is that you send his blood off ASAP to John Aitken to get him tested early for MAP. Trust me, you're not going to want to do this once you have the baby. It's a pain. I have kids, and they're loving time suckers! This would probably be the most important piece of data you could gain to make this decision right now. If one of my kids came down with this, and I knew it was Crohn's and I had a positive MAP culture, I'd personally hit it with all I had right from the start, but that's just me. 

Yes, we'll know a ton more in a few years. Don't forget about John Aitken's publication (maybe this year?) and also future trials with Dietzia. History is filled with stories about unknown pathogens which were eventually determined to be responsible for disease. The biggest common thread in these stories I've read is that the diagnostic techniques weren't advanced enough to see the pathogen, so therefore scientists blamed the disease on something else, usually socially motivated. Also, seems like researchers have a thing for trying the therapies first on themselves. A bunch of the early TB researchers did this too!


----------



## irishgal

Sandrine - Oh, how I wish I could just come over there and give you a huge hug!!! What an awful time you've had. I remember this process from a patient perspective in my teens, and I knew my parents struggled right along with me. As for a doc in Monteal, have you tried to contact Dr. Marcel Behr's group at McGill? He's a huge MAP fan and if he's not treating patients, he may be able to point you in the right direction. Also, here's a list of the RedHill sites. There's one in Quebec:

https://clinicaltrials.gov/ct2/show/study/NCT01951326?show_locs=Y#locn

Maybe see if that doctor has a private practice and would consider talking to you about your daughter's case. I have another confidential contact as well from my list. I will send you a PM. 

HUGE hugs!!! You're a great mom for looking after your daughter so well. CDiff is awful, so you want to proceed very carefully with AMAT and have a good doc on your side. Have you considered other options like CBD oil, LDN or UVBI? What antibiotics was she on that gave her trouble?


----------



## worriedboy

InstantCoffee said:


> Of course, my worry is still this.
> We know that OCTN transport proteins have been linked to Crohn's disease, these proteins are responsible for transport of neurotransmitters from the gut. Shut these down and you get serotonin toxicity in the gut.
> 
> What creates serotonin in the gut?
> 
> Bacteria.
> 
> What does AMAP therapy do? It kills bacteria indiscriminately.
> 
> So what if the reason that we're susceptible to MAP is the deficient OCTN transport proteins that are shutting down serotonin transport, and the chain of inflammatory effects that come as a result making the intestines vulnerable to pathogenic species (seeing as we see more than just MAP being implicated, including AIEC and chronic bouts of c.diff in crohn's patients). This could suggest a general susceptibility to pathogenic bacteria, not just MAP.
> 
> We're then back to treating symptoms instead of cause.
> 
> I still think AMAP sounds better than biologics and steroids, even if this is the case, but it means we need to keep digging, and I fear that once we have a 'good enough' solution that will stop.



If I understand you correctly, you mean that AMAP may work not necessarily by killing MAP but rather by reducing the number of gut bacteria in general, thus reducing serotonin levels and avoding the excess that may be the cause to the chronic inflammation ?
I heard before this argument that some AB also have anti-inflammatory properties and may be better than placebo even if MAP is not the cause.

However...
If this is the case I would expect antibiotics like Cipro to present similar performance to the AMAP combo ?
Also, I tend to believe that the genetic suceptibility to Crohns teaches us that an infection -is- a factor (overlap to immunodeficinicy/problem to kill intra-cellular bacteria); so it's not that the serotonin outtake from the gut is the cause and reducing gut bacteria is masking symptoms.


----------



## irishgal

I can't comment on the seratonin bit, since I need to do a LOT more research to be literate. However, on the AMAT question, Cipro kills MAP to some extent, but not very well on its own. Plus, it's such a hardy bug that you really need a triple combo of intracellular antibiotics. Cipro/flagyl combo is actually approved for CD and each has some activity against MAP, but they're not strong enough to do much damage, so they can breed resistance. At least that's the way I understand it, but I'm not a doc! As a patient, flagyl helped me a ton, but AMAT has been a miracle.


----------



## Scared1

Monday 16 May 2016
0
HAVE YOUR SAY
Sufferers of a bowel disease and their families, want their newly elected MSPs to lend their support to a vaccine which may cure the condition.

Scientist, retired surgeon and Crohn’s disease specialist Professor John Hermon-Taylor and his team hope to begin human trials this year.

He said: “We believe we are on the verge of a breakthrough.”

Jean White and Maureen Graham from Kirkintilloch, who have close relatives with Crohn’s, are urging people to write to MSPs Rona Mackay and Gil Paterson. They want the issue pushed up the Scottish government’s agenda as a major public health concern. For more, visit https://www.facebook.com/crohnsmapvaccine/



Read more: http://www.kirkintilloch-herald.co....ne-msps-aid-is-sought-1-4129044#ixzz48p9HwHBX


----------



## Scared1

Honestly, even if SOME of crohn's is caused by this - even if it is 20% - it is worth it, to provide people who suffer with relief.


----------



## Scared1

irishgal said:


> New post by John Aitken: Victory
> http://thecrohnsinfection.org/presenter-blog/


Hi Irishgal - random question, have you ever done any genetic testing to see if you have any mutations associated with crohn's susceptibility?

Thank you!


----------



## irishgal

Scared - I've never done the genetics. I pretty much assumed I had some of the common mutations, since my entire extended family is littered with every type of "autoimmune" disease possible. IBD, T1D, lupus, asthma, arthritis of every kind. Have considered getting the kids screened but there may be privacy and medical implications with that in the future (wouldn't insurance companies love to know our DNA!), so have not done it. Plus, it's super expensive and I doubt covered by insurance. I think in. y case, the evidence points to that I probably have some mutations in those genes that can't clear intracellular infections.


----------



## Scared1

irishgal said:


> MarkB - Here is the Prof. Borody pediatric study that talks about treatment naive patients. Only 10 treated, so a very small sample size. I know I saw a comment from him somewhere, maybe an interview, where he talks about how the therapy could especially benefit treatment naive patients, but I've read so much I can't find it now!
> http://ir.redhillbio.com/releasedetail.cfm?releaseid=797192
> 
> Scared - Congrats! Wow, this must have been a rough month or so with all of this on your plate. Is this your first? I understand your dilemma. Do I preventatively treat with with big guns, especially if it's MAP, and hope you can kill most of it and stop any damage before he gets bad symptoms, or do you wait to see how long he can hold out feeling well and treat conservatively. That's really a decision you both have to make with your doc. At least he sounds pretty great! The only thing I could advise, is that you send his blood off ASAP to John Aitken to get him tested early for MAP. Trust me, you're not going to want to do this once you have the baby. It's a pain. I have kids, and they're loving time suckers! This would probably be the most important piece of data you could gain to make this decision right now. If one of my kids came down with this, and I knew it was Crohn's and I had a positive MAP culture, I'd personally hit it with all I had right from the start, but that's just me.
> 
> Yes, we'll know a ton more in a few years. Don't forget about John Aitken's publication (maybe this year?) and also future trials with Dietzia. History is filled with stories about unknown pathogens which were eventually determined to be responsible for disease. The biggest common thread in these stories I've read is that the diagnostic techniques weren't advanced enough to see the pathogen, so therefore scientists blamed the disease on something else, usually socially motivated. Also, seems like researchers have a thing for trying the therapies first on themselves. A bunch of the early TB researchers did this too!


Sorry Irishgal! Just saw this post and didn't realize I didnt replt, my apologies...loooong story regarding this one, lol. This is my second child - I have a 14 year old from my first marriage which lasted for 3 years and had to end because of a very abusive (physically) husband. Got a divorce and had to deal with the stigma - raised my daughter, going to school nonstop the whole time, then last year I met my husband. What's weird is that I never had a social life and told myself I want to spend my life taking care of my daughter and just being at peace...met my husband last year in a coffee line at work and felt like I was going to have a happy ending - got married, got pregnant, and finally after 15 years felt at peace...My daughter and I were safe, my new husband was kind and I was suddenly relivinf everything I was deprived of most of my life, then crohn's hit.  if you knew how many sleepless nights I had, pregnancy complications because of this diagnosis, and utter depression at not having my happy ending, I am surprised the baby is healthy thank god...I just hope that with the new research, that it will be 5-10 years and this crohn's mystery can be resolved...and the more I read the more I feel better, because its not false hope, I truely believe that maybe this isnt something I have to worry about for the next few decades...you get tired of anxiety after a while


----------



## irishgal

Wow Scared - you've been through a lot! That's horrible that your ex was abusive. Stuff like that should never happen. I'm glad you're safe now. I'm so happy for you that you got a second chance. Incidentally, I met my husband in a coffee shop as well, and we've had 14 amazing years so far! You'll still have your happy ending. Crohn's isn't great, and you've seen the stories, but you said your husband really doesn't have symptoms which is huge. Honestly, if it's not one thing, it's another. Plus, looking back on 25 years, I've been through a lot, but I've also lived my life as a pretty normal person for the last 25 years because it was mild for most of that, and then when I had surgeries and it got bad, I ended up fixing it with AMAT. Through it all, I still feel like I've done most of what I've wanted to do in life even though I've had to sacrifice a little on the physical side. I'm just not as hearty as I was pre-Crohns. 

Even with Crohn's, I'd still tell you that I've found my happy ending. I have an amazing husband who is kind and caring, and he's taken care of me sometimes, which made us even stronger. Being sick really showed us what was important in life, and what was not. We rarely fight (despite having three kids!), and he's my best friend. Don't let Crohn's steal your new happiness. Your husband is getting this at the perfect time - when there is a ton queued up that may eventually provide a cure! There is so much new research being done, and now you're in the best group since I truly think this is pathogen based. You're already ahead of most, and your husband will benefit. Enjoy your baby, your daughter, your marriage and walk this life together! Crohn's is very manageable with individualized treatment. A HUGE hug to you!!!!


----------



## Scared1

irishgal said:


> Wow Scared - you've been through a lot! That's horrible that your ex was abusive. Stuff like that should never happen. I'm glad you're safe now. I'm so happy for you that you got a second chance. Incidentally, I met my husband in a coffee shop as well, and we've had 14 amazing years so far! You'll still have your happy ending. Crohn's isn't great, and you've seen the stories, but you said your husband really doesn't have symptoms which is huge. Honestly, if it's not one thing, it's another. Plus, looking back on 25 years, I've been through a lot, but I've also lived my life as a pretty normal person for the last 25 years because it was mild for most of that, and then when I had surgeries and it got bad, I ended up fixing it with AMAT. Through it all, I still feel like I've done most of what I've wanted to do in life even though I've had to sacrifice a little on the physical side. I'm just not as hearty as I was pre-Crohns.
> 
> Even with Crohn's, I'd still tell you that I've found my happy ending. I have an amazing husband who is kind and caring, and he's taken care of me sometimes, which made us even stronger. Being sick really showed us what was important in life, and what was not. We rarely fight (despite having three kids!), and he's my best friend. Don't let Crohn's steal your new happiness. Your husband is getting this at the perfect time - when there is a ton queued up that may eventually provide a cure! There is so much new research being done, and now you're in the best group since I truly think this is pathogen based. You're already ahead of most, and your husband will benefit. Enjoy your baby, your daughter, your marriage and walk this life together! Crohn's is very manageable with individualized treatment. A HUGE hug to you!!!!


Thank you Irishgirl You made me a little teary - it's just frustrating I guess this whole uncertainty. Especially because of my prior bad situation - I developed major anxiety so I am always worried and trying to be in control because it was really bad back then when I didn't know at any time of day what would set my ex-husband off and it would be REALLY bad outcome for me that day, and so now with Crohn's, I worry about the uncertain future which contributes more than anything to my stress and anxiety. I guess this is a good lesson for me and you are right - this is the best time, with all the stuff that is coming down the pipeline, within a decade, I am sure the IBD landscape would be completely different than it is. Thank you for sharing your story - I have the utmost respect for what you have been on in your journey and for every single person on this forum. I can only wish I can develop strength like all of you and look back and say this made me better


----------



## InstantCoffee

worriedboy said:


> If I understand you correctly, you mean that AMAP may work not necessarily by killing MAP but rather by reducing the number of gut bacteria in general, thus reducing serotonin levels and avoding the excess that may be the cause to the chronic inflammation ?
> I heard before this argument that some AB also have anti-inflammatory properties and may be better than placebo even if MAP is not the cause.
> 
> However...
> If this is the case I would expect antibiotics like Cipro to present similar performance to the AMAP combo ?
> Also, I tend to believe that the genetic suceptibility to Crohns teaches us that an infection -is- a factor (overlap to immunodeficinicy/problem to kill intra-cellular bacteria); so it's not that the serotonin outtake from the gut is the cause and reducing gut bacteria is masking symptoms.


Other antibiotics do effect Crohn's, as someone else has stated. I was on flagyl for unrelated problems and my symptoms greatly improved.

We also seen patients improve on probiotic therapies as well as during fasts. 

It also better explains the link to OCTN1 and 2 markers 
http://www.ncbi.nlm.nih.gov/pubmed/16333318

I haven't seen anything linking OCTN to susceptibility to MAP


----------



## eleanor_rigby

http://i.stuff.co.nz/the-press/news...-in-crohns-research-could-lead-to-other-cures


----------



## Scared1

eleanor_rigby said:


> http://i.stuff.co.nz/the-press/news...-in-crohns-research-could-lead-to-other-cures


Hi Eleanor, first let me say thanks for the link for the thread - it seems the SSI has some promise, but I am wondering that something like that could be used once the pathogen or whatever is the "trigger" has been cleared, but 8 weeks may not be a long enough time (similar to the AMAT therapy - you have to use it for a long time).

I just read this article - exciting stuff


----------



## eleanor_rigby

That's OK  I am interested in upcoming treatments that don't suppress the immune system and hope one of these research areas leads to a major breakthrough. The current FDA approved treatments rates leading to remission in clinical trials are so poor.


----------



## Scared1

eleanor_rigby said:


> That's OK  I am interested in upcoming treatments that don't suppress the immune system and hope one of these research areas leads to a major breakthrough. The current FDA approved treatments rates leading to remission in clinical trials are so poor.


I completely agree - it seems like all these immune system type of treatments are lacking either because the focus is purely immune. I read this article about a pair of twins - genetically identical, one had crohn's the other didn't. I mean IDENTICAL - so obviously, immune-only is not enough of a premise to develop treatments. With these numerous "breakthroughs" on the horizon - I think the final effective way is to clean out the pathogen (via a Vaccine of some sort - MAP or AEIC, or whatever the case is), ensure no re-infection to similar pathogens so the person would need to stick to a certain diet (which I think people would rather do after being cured of crohn's instead of with crohn's and restrictions) and some type of supplementary therapy - maybe SSI's every once in a while or some high degree of vitamin D dosages, or something. Whatever the final combo is - I do think that the current list of medications are just not cutting it, since if it is immune based solely, more should respond. But, who knows, we ill shall see...:smile:


----------



## irishgal

There are actually two articles on John Aitken up today! The other one is more science based and gives more detail. I linked to both on this site post:

http://thecrohnsinfection.org/john-aitken-in-the-news/


----------



## Scared1

This is very interesting - published May 15, 2016. I have attached the link and the excerpt that I want to focus on:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4801167/

Microbial modifiers

Gut microbiota is considered an essential trigger in chronic IBD. Bacterial overgrowth treatment with intraluminal antibiotics (Rifaximin) induced remission in patients with moderately active CD.56 The discovery of AIEC and MAP as etiopathogenic factors promotes the hypothesis of antibacterial drugs as therapeutics.

QBECO Site Specific Immunomodulator is a vaccine derived from inactivated E. coli bacteria, which has shown excellent results in the induction of clinical response and remission in subjects with moderate to severe CD (Phase I/II trials placebo-controlled).57 The basis of this therapy is to stimulate the innate immune system to remove the underlying trigger. During the trial, patients followed their normal therapeutic regimen for the CD.

MAP is the subject of the study MAP US Phase III, a randomized double-blind study aimed to investigate RHB-104 antibiotic (combining clarithromycin, rifabutin, and clofazimine) efficacy in inducing remission in patients with moderately to severely active CD.58 One previous study with the same antibiotic combination administered for 2 years had positive results at 18 weeks, but no final beneficial outcome.59


----------



## Scared1

Hi Irishgal - I have a question about the MAP Vaccine. They are currently raising funding, but isn't the intellectual property rights owned by HAV Vaccines already to manufacture? Wouldn't they put up the funding? Just a random question....


----------



## eleanor_rigby

The funding they are raising is for the MAP test only Scared1


----------



## Scared1

Thank you Eleanor! I wanted to confirm - I was explaining it to my husband and that is one area, despite reading so much, I didn't confirm


----------



## irishgal

Yes Scared, you are right. Even though the branding is for MAP Vaccine Heroes, the money raised by the public, non-investors seems to be going to the diagnostic test only. I think this is a more recent development since even a year ago it seemed that the public was raising funds for the vaccine. I'm not part of their group, so I can't fully answer!


----------



## xeridea

There is also the UCF test that Redhill/Quest are commercializing, and which may become clinically available in the States sooner than the CMV tests. 

In my layman's understanding, both tests follow the same premise, wherein there's a component that will bind to MAP, and these components have some markers that can be detected via some instrument. I believe the CMV test uses luminescence marker (picked up via  spectrometer?), while the UCF/Redhill test relies on magnetic nanoparticles as markers.

Here's an excerpt from the description of the UCF patent:

These magnetic nanosensors are composed of a polymer-coated iron oxide nanoparticle onto which affinity ligands are conjugated to facilitate binding and magnetic detection of a particular target [11], [12]. Upon specific binding of a target to ligands on the magnetic nanoparticle, changes in the sample's magnetic resonance signal (specifically the water proton relaxation time; T2) occur that correlate with the target concentration in solution. By measuring the changes in T2 relaxation times upon target interaction and correlating the intensity of the change with the target concentration, one can develop a sensitive detection method, therefore the acronym of magnetic relaxation nanosensors (MRS).

Elsewhere they state that they use "oligonucleotide sequence (ATGTGGTTGCTGTGT) complementary to the IS900 sequence in MAP for their nanoparticle capture probe" (affinity ligand?).

I think the CMV test uses a MAP antibody to find and stick to MAP in the test sample.


----------



## JMC

xeridea said:


> There is also the UCF test that Redhill/Quest are commercializing, and which may become clinically available in the States sooner than the CMV tests.


I have been lead to believe however, that UCF/Naser's test does not work properly as it is not specific to MAP.



xeridea said:


> In my layman's understanding, both tests follow the same premise, wherein there's a component that will bind to MAP, and these components have some markers that can be detected via some instrument. I believe the CMV test uses luminescence marker (picked up via  spectrometer?), while the UCF/Redhill test relies on magnetic nanoparticles as markers.


Yes, you can see the actual equipment used in Hermon-Taylor's MAP Test here: http://crohnsmapvaccine.com/map_test/



xeridea said:


> I think the CMV test uses a MAP antibody to find and stick to MAP in the test sample.


Yes, I believe that is correct.  The most detailed explanation of the MAP Test is here: http://thecrohnsinfection.org/map-diagnostics-dr-amy-hermon-taylor/


----------



## Scared1

Great radio interview with Tom Borody:
https://www.youtube.com/watch?v=3eH7FwYvu18


----------



## Scared1

Great article!
http://explore.tandfonline.com/cont...ection/expert-review/Crohn's-disease-may-2016

I didn't know about the tool they have to detect Dormant MAP!


----------



## Scared1

Hi Zim,
Can you post the correct link here? For some reason, it won't connect when I try....thank you!


----------



## Zim

This link should work in all browsers:

http://explore.tandfonline.com/cont...lection/expert-review/crohns-disease-may-2016

UPD: 
Go to the link above and manually change "crohns" to "c h r o n s" (without spaces) in the browser's address bar.


----------



## JMC

Zim said:


> This link should work in all browsers:
> 
> http://explore.tandfonline.com/cont...ection/expert-review/Crohn's-disease-may-2016


It doesn't work for me using Windows 10 & Chrome or Firefox


----------



## Zim

JMC said:


> It doesn't work for me using Windows 10 & Chrome or Firefox


Kek, just figured it out =)

Authors of the article made a typo in the URL - they wrote "c h r o n s" (had to write it with spaces =)) instead of "Crohn's", and dumb forum auto-correction mechanism converts this "c h r o n s" into "Crohn's" every time, even in the link body, so link eventually won't work =)

Go *here* and manually change "crohns" to "c h r o n s" (without spaces) in the browser's address bar. 

P.S.:
Sooo much hassle with just one link


----------



## Scared1

Zim said:


> Kek, just figured it out =)
> 
> Authors of the article made a typo in the URL - they wrote "c h r o n s" (had to write it with spaces =)) instead of "Crohn's", and dumb forum auto-correction mechanism converts this "c h r o n s" into "Crohn's" every time, even in the link body, so link eventually won't work =)
> 
> Go *here* and manually change "crohns" to "c h r o n s" (without spaces) in the browser's address bar.
> 
> P.S.:
> Sooo much hassle with just one link


Thank you Zim!


----------



## irishgal

Thanks for correcting the link! Curious to know who wrote the article. It doesn't say. Was it from the vaccine camp?


----------



## xeridea

irishgal said:


> Thanks for correcting the link! Curious to know who wrote the article. It doesn't say. Was it from the vaccine camp?


I can't put a finger on it, but the paper has a strangely familiar tone and reading it evokes an odd deja-vu feeling.


----------



## Scared1

So I came about this dissertation which literally summarizes all of the analysis and research done on MAP and Crohn's, a very interesting read. For lack of a better word - it "summarizes" 30 years worth of data and discusses the potential for associated between MAP and Crohn's - in a lot more detail than you would find in many online publications:

*Excerpt #1:*
For more than 30 years researchers have investigated M. paratuberculosis as a potential
cause of Crohn’s disease in humans and more recently as a cause of other human diseases
such as diabetes mellitus type 1 (T1DM) and multiple sclerosis; the evidence for these causal
relationships is summarized in a recent systematic review (Chapter 4) [11]. In brief,
researchers have demonstrated epidemiological associations between these diseases and the
presence of or seropositivity to M. paratuberculosis, however, there was a lack of association
between high exposure occupations (e.g. farmers, large animal veterinarians) and
development of Crohn’s disease [11].* A survey of topic specialists (Chapter 5) concurred
with the findings of our synthesis research (Chapter 4) that M. paratuberculosis likely poses
a risk to human health.* In this survey, 93% of respondents ranked it somewhere between low
and high risk [10], however, many topic specialists considered the priority of M.
paratuberculosis as a public health issue as only moderate due to poor understanding of how
exposure relates to disease [10]. 

*Another excerpt:*
Risk Characterisation: M. paratuberculosis
The epidemiological evidence indicates a fairly consistent association between M.
paratuberculosis and human diseases like Crohn’s disease [11]. These associations do not
necessarily reflect a causal relationship and there are numerous knowledge gaps in
understanding, including whether M. paratuberculosis is indeed pathogenic to humans and if
so the pathogenesis of disease, susceptible populations, and conditions of exposure (Chapters
4 and 5) [11, 12]. Overall, the available evidence suggests that M. paratuberculosis is likely
a component cause of Crohn’s disease, probably involving other factors. If this is true, there
may be many combinations of sufficient component causes that lead to Crohn’s disease,
some of which do not require exposure to M. paratuberculosis. [25]. This is supported by the
inability to detect M. paratuberculosis in all Crohn’s disease patients and the lack of
association between Crohn’s disease and occupational exposure, e.g. farmer or veterinarian
working with infected livestock [11, 26, 27]. Immune dysfunction in combination with other
factors is among the hypothesized multi-factorial causes of Crohn’s disease [25]. A good
deal of research has gone into identifying human genotypes associated with up or downregulation
of certain immune pathways and there is a large number of loci associated with
Crohn’s disease, but little clarity on which deficiencies result in development of Crohn’s
disease [28-30]. 

Here is the link to the dissertation (not sure if it was published yet):
https://atrium.lib.uoguelph.ca/xmlu...ll_Lisa_201605_PhD.pdf?sequence=3&isAllowed=y

So the takeaways from my opinion: It may take a while to determine the cause and affect of MAP on Crohn's pathogenisis, however, the affiliation between the two is there and there is strong evidence indicating this. Therefore, preventative and caution should be taken = taking the MAP Vaccine just in case Whether or  not my husband tests positive when he tries for it down the line, this is something hopefully as soon as it is approved 3-5 years down the line, that I think wouldn't hurt at all to take. 

I hope the link works for you guys this time (it was presented April, 2016)!


----------



## anti_map

How long does it take to make one vaccine shot?
Sorry asking this question. I am very tired of this disease.


----------



## Scared1

anti_map said:


> How long does it take to make one vaccine shot?
> Sorry asking this question. I am very tired of this disease.


Hi Anti-map,
You know sometimes I wonder the same thing - I wish we could just know the what exactly the funds are for - even if they made the vaccine, do a trial on like literally 3-5 people, I am sure MANY will volunteer to see the efficacy and then that should get more people involved. I just read news everyday about research - biologics, new drugs, etc...and hardly anything about this vaccine which is disheartened and worrisome to me, because it makes it seem like it will never happen. They say human trials this year - but I read on some forum that they had said the same thing about last year...I actually sent them am email asking them to update their timeline on the website and whether they had an updates newsletter talking about the status....hope they reply soon.


----------



## JMC

Scared1 said:


> I actually sent them am email asking them to update their timeline on the website and whether they had an updates newsletter talking about the status....hope they reply soon.


The timeline is being updated at the moment.  For the MAP Test, a detailed breakdown of funds raised and what the money has been spent on will also be on the website soon.  I can tell you it roughly breaks down between lab technician's salary, purchase of a flow cytometer and purchase of monoclonal reagents.


----------



## JMC

anti_map said:


> How long does it take to make one vaccine shot?
> Sorry asking this question. I am very tired of this disease.


Unfortunately, conducting a trial is not as simple as making one vaccine shot


----------



## Scared1

JMC said:


> The timeline is being updated at the moment.  For the MAP Test, a detailed breakdown of funds raised and what the money has been spent on will also be on the website soon.  I can tell you it roughly breaks down between lab technician's salary, purchase of a flow cytometer and purchase of monoclonal reagents.


That's great JMC - thank you! Are you involved in the process? Is it still looking good for July testing? I worked in a lab for 3 years as a biochemist - if I lived there, I would volunteer like its nobody's business!


----------



## JMC

Scared1 said:


> That's great JMC - thank you! Are you involved in the process? Is it still looking good for July testing? I worked in a lab for 3 years as a biochemist - if I lived there, I would volunteer like its nobody's business!


I am one of the people listed here: http://crohnsmapvaccine.com/about/team/

Regular update are available through the news letters which are here or via subscribing:
http://crohnsmapvaccine.com/category/news/newsletters/

I believe the vaccine trial has been delayed by a manufacturing hiccup at IDT in Germany, but the impact will only be clear when the timeline is updated.


----------



## Scared1

JMC said:


> I am one of the people listed here: http://crohnsmapvaccine.com/about/team/
> 
> Regular update are available through the news letters which are here or via subscribing:
> http://crohnsmapvaccine.com/category/news/newsletters/
> 
> I believe the vaccine trial has been delayed by a manufacturing hiccup at IDT in Germany, but the impact will only be clear when the timeline is updated.


Oh that's so great you are a part of it! Is the hiccup going to cause a major delay? Thank you - and I do subscribe to the newsletters


----------



## xeridea

JMC said:


> I am one of the people listed here: http://crohnsmapvaccine.com/about/team/
> 
> Regular update are available through the news letters which are here or via subscribing:
> http://crohnsmapvaccine.com/category/news/newsletters/
> 
> I believe the vaccine trial has been delayed by a manufacturing hiccup at IDT in Germany, but the impact will only be clear when the timeline is updated.


Ooh, bummer! Hopefully they'll resolve the manufacturing hiccup soon.

Does this mean that they've moved manufacturing from Jenner Institute? I thought that's where the vaccine was being produced for the trial.


----------



## Scared1

xeridea said:


> Ooh, bummer! Hopefully they'll resolve the manufacturing hiccup soon.
> 
> Does this mean that they've moved manufacturing from Jenner Institute? I thought that's where the vaccine was being produced for the trial.


Good point! I haven't thought of that - I looked up IDT:
IDT Biologika is a German biopharmaceutical company with headquarters in Dessau-Rosslau. It develops and produces biotechnology-based vaccines and pharmaceuticals. 

So are they the new producers as opposed to Jenner institute? Do you know JMC why they changed it by any chance?


----------



## Scared1

Actually - just saw this might answer the question, it was always noted that it was produced by HAV Vaccines from when I started checking this a few months back, and here is an excerpt of their website:
News

JANUARY 2016

Share subscriptions reach £1.5 million
HVL has now raised a total of £1.5 million of subscription monies for new shares in HVL and has issued the relevant shares.

GMP manufacture

GMP manufacture of HVL’s priming vector ChAdOx2 HAV began in November 2015 at the Clinical BioManufacturing Facility at Oxford University.

*GMP manufacture of HVL’s boost vector MVA HAV began in January 2016 at IDT Biologika GmbH in Germany. *.


----------



## JMC

Scared1 said:


> *GMP manufacture of HVL’s boost vector MVA HAV began in January 2016 at IDT Biologika GmbH in Germany. *.


I believe the above is incorrect, manufacture did not start until April 2016 due to IDT being oversubscribed.


----------



## Scared1

JMC said:


> I believe the above is incorrect, manufacture did not start until April 2016 due to IDT being oversubscribed.


Oh I see - so that would push the timeline then.

Thank you JMC - please keep us posted


----------



## Scared1

sid said:


> these new developments are really encouraging... wish Dr Taylor all the best for the new MAP TESTing tests


Hi Sid,
I was looking at your signature - you have been in remission since diagnosis without meds?


----------



## sid

Scared1 said:


> Hi Sid,
> I was looking at your signature - you have been in remission since diagnosis without meds?


Hi,

Even before I was offically diagnosed with Crohns,,when the symptoms first appeared, I visited a an Ayurvedic doctor who diagnosed it as 'Grahani Rog' (its a Sanskrit term for Crohns/Colitis). The gentleman told me in clear words that going forward, food and lifestyle was my only medicine for life. Though he prescribed me meds and general Ayurvedic guidelines for my diet. I just followed the diet plan but didnt take the aurvedic medicines as I was always worried about side effects.  Later when I was dignosed with Crohns disease after biopsy at a modern clinic, I was prescribed Pentasa. I continued Pentasa for a month and stopped, primarily because the medicines were expensive and also because my condition already started improving due to diet and lifestyle changes. That was the only time I took any medicines for Crohns.

I did follow few things though, especially that I learnt from this great forum. Like taking my Vit D and B12 shots though I have not taken B12 for months now and still its sufficient as per my last two tests. The only symptom that I continue to get is the gas formation But that I guess is not limited to only us Crohnnies.


----------



## Scared1

Hi Sid,
That is very interesting - if you don't me asking, have you had a scope at all to check how things are progressing? What kind of diet did the doctor put you on that has helped?


----------



## sid

Scared1 said:


> Hi Sid,
> That is very interesting - if you don't me asking, have you had a scope at all to check how things are progressing? What kind of diet did the doctor put you on that has helped?


The last colonoscopy in 2015 had showed no signs of Crohns. The biopsy was not done.  No inflammation detected through blood work either. I plan to go for a colonoscopy by the end of this year or may be the beginning of next year where I will also ask to get a biopsy done. The diet plan consisted of mainly  select vegetable (and avoiding many of them), fruits, Morning intakes of curd, Avoiding non veg totally including eggs (although I cheated sometimes, but no red meat at all), I also stuck to khichdi, which is a special Indian preparation of rice and lentils for two weeks at a stretch then slowed down to once a week. apart from this changes in time and quantity of food intake and avoiding certain food after sunset, for example curd, etc. I keep following it even today though I cheat sometimes with chicken  but I know my limits. The list of changes is long,,will PM you if you want..I think it would be inappropriate to hijack this lovely thread.


----------



## Scared1

sid said:


> The last colonoscopy in 2015 had showed no signs of Crohns. The biopsy was not done.  No inflammation detected through blood work either. I plan to go for a colonoscopy by the end of this year or may be the beginning of next year where I will also ask to get a biopsy done. The diet plan consisted of mainly  select vegetable (and avoiding many of them), fruits, Morning intakes of curd, Avoiding non veg totally including eggs (although I cheated sometimes, but no red meat at all), I also stuck to khichdi, which is a special Indian preparation of rice and lentils for two weeks at a stretch then slowed down to once a week. apart from this changes in time and quantity of food intake and avoiding certain food after sunset, for example curd, etc. I keep following it even today though I cheat sometimes with chicken  but I know my limits. The list of changes is long,,will PM you if you want..I think it would be inappropriate to hijack this lovely thread.


Thanks - that is very interesting! Yes, if you can please PM me details, I would like to encourage my husband to follow this if possible!


----------



## hingrum

Super late to this forum .... Is anyone on Stellara? I am suppose to go see a doctor this month that can get me approved through insurance for the med.  just curious how many people are already trying it.


----------



## Scared1

Nice article - talks about dysbiosis seen in MAP infected cows. I wonder if they can look at the dysbiosis seen and compare to see if there is a similar "pattern" seen in human's by comparing each profile?

http://www.ncbi.nlm.nih.gov/pubmed/27494144

*Abstract:*
PLoS One. 2016 Aug 5;11(8):e0160353. doi: 10.1371/journal.pone.0160353.
Dysbiosis of the Fecal Microbiota in Cattle Infected with Mycobacterium avium subsp. paratuberculosis.
Fecteau ME1, Pitta DW1, Vecchiarelli B1, Indugu N1, Kumar S1, Gallagher SC1, Fyock TL1, Sweeney RW1.
Author information
Abstract
Johne's disease (JD) is a chronic, intestinal infection of cattle, caused by Mycobacterium avium subsp. paratuberculosis (MAP). It results in granulomatous inflammation of the intestinal lining, leading to malabsorption, diarrhea, and weight loss. Crohn's disease (CD), a chronic, inflammatory gastrointestinal disease of humans, has many clinical and pathologic similarities to JD. Dysbiosis of the enteric microbiota has been demonstrated in CD patients. It is speculated that this dysbiosis may contribute to the intestinal inflammation observed in those patients. The purpose of this study was to investigate the diversity patterns of fecal bacterial populations in cattle infected with MAP, compared to those of uninfected control cattle, using phylogenomic analysis. Fecal samples were selected to include samples from 20 MAP-positive cows; 25 MAP-negative herdmates; and 25 MAP-negative cows from a MAP-free herd. The genomic DNA was extracted; PCR amplified sequenced on a 454 Roche platform, and analyzed using QIIME. Approximately 199,077 reads were analyzed from 70 bacterial communities (average of 2,843 reads/sample). The composition of bacterial communities differed between the 3 treatment groups (P < 0.001; Permanova test). Taxonomic assignment of the operational taxonomic units (OTUs) identified 17 bacterial phyla across all samples. Bacteroidetes and Firmicutes constituted more than 95% of the bacterial population in the negative and exposed groups. In the positive group, lineages of Actinobacteria and Proteobacteria increased and those of Bacteroidetes and Firmicutes decreased (P < 0.001). Actinobacteria was highly abundant (30% of the total bacteria) in the positive group compared to exposed and negative groups (0.1-0.2%). Notably, the genus Arthrobacter was found to predominate Actinobacteria in the positive group. This study indicates that MAP-infected cattle have a different composition of their fecal microbiota than MAP-negative cattle.


----------



## Julia S

Hi everyone! I'm new to the forum (and newly diagnosed) and trying to get my head around all the currently available and future treatment options for Crohn´s. As I read about meds in Phase II/III, I couldn´t help but notice that more often than not promising drugs are bought by bigger pharmaceuticals or bio companies and I can´t help but wonder: if anti-MAP or a MAP vaccine is a credible way forward in managing Crohn´s, why aren´t there any big pharmas working on this as well or attempting to buy the technology? At the very least, why isn´t this getting market attention from the big players or other research groups around the globe? Thoughts?


----------



## irishgal

Julia - RedHill is a BioPharma doing a Stage 3 trial (which is almost done) on AMAT. Prior to RedHill, there was nothing to patent because the MAP theory uses generic drugs. Big Pharma wouldn't be interested, plus it would knock out their billions of immunosuppressants if Crohn's was shown to be pathogenic. 

Also, the MAP theory could never be conclusively proven because the diagnostic techniques were not available. But now there are labs working on these successfully, and I'm guessing down the road a lot more companies are going to either offer to purchase these smaller, successful ones (like Otakaro) or begin their own R&D on these methods. RedHill is the key. Once AMAT is approved by the FDA for the treatment of CD, companies will jump in. I've noticed that in the veterinary sector, there is a huge interest in techniques and diagnostics to deal with MAP in food and cattle. Even Nestle jumped in with a new method to purify their infant formula. 

I'm sorry you have CD. It's a rocky road sometimes, but you got it at the perfect time, when the science is blowing wide open. Hopefully you won't have the decades of stories like many of us, and your case can be managed to give you the best quality of life. And who knows, I've never given up hope for a cure, and the new research really makes me think that I'll see it in my lifetime. I hope you are well, and please reach out if you need anything.


----------



## Badtummy4

Any news on the MAP vaccine?


----------



## xeridea

Badtummy4 said:


> Any news on the MAP vaccine?


The source: http://crohnsmapvaccine.com/news/

But last I heard Phase 1 trials pushed back to end of this year. If that goes well, phase 2 usually follows 18 months later. And if good results there, there will be big cash infusion to catapult into phase 3. If all goes well, maybe something to general patient population in 2020 timeframe?


----------



## xeridea

Badtummy4 said:


> Any news on the MAP vaccine?


I want to revise my estimate to mid-2020's at earliest for when I think the vaccine might become available as I have thought about this some more.

There has been some recent research in immuno-oncology that uses a heat-killed whole cell Mycobacterium vaccine to augment pancreatic cancer treatment. This vaccine is used to fire up the immune system (T-Cells) to augment the effects of a chemotherapy drug targeting pancreatic cancer. 

The company behind it, Immodulon Therapeutics, is also a UK company. From 2010-2015, their cash position ranged from £2M-£5Million, likely sufficient to comfortably fund clinical trials.

They started and completed their Phase 1 (safety) trial in 2010. They then went on to Phase 2 in 2011, and though wrapped up in 2015, are still working on final results. Work is being done on initiating Phase 3 but nothing yet. The upshot is that Phase 1 and 2 took about 6 years to complete. Phase 3 may tack on another 3 or 4 years to process, so a decade from the start of Phase 1 to completion of Phase 3 is not unfathomable. 

So if MAP Vaccine goes into trials end of this year, and all the data between now and the end of phase 2 trials show promise, then a vaccine may become available by mid-2020s.

The wrench in the works though is at what pace and with what vigor can development continue to be driven forward? Prof. Hermon-Taylor's bio says he became a doctor in 1960. Wikipedia says it takes 7-9 years to become a doctor in the UK. So it's likely he was 25-30 years old at the time. Fast-forward 56 years to today, that puts the professor at about 80 Y.O. Though I'm sure the professor is as healthy as an ox, he is getting up there in years. And how well is their effort funded? They continue to push for crowd-funding their efforts, though I know the entity that owns the intellectual rights to the vaccine may have more capital at hand. 

Back in 2013 when I learned about the MAP vaccine I was a much bigger cheerleader of their efforts. As time passes, I have gained a better appreciation for the difficulties of drug development and am scaling back my expectations.


----------



## Julia S

Yea, reading about some of the biologics and other medications used for Crohns, it seems it usually takes 10 years between initial assessment and the drug hitting the market. And, in any case, we really have no idea if the vaccine will actually work  It's frustrating to think that we might need to wait a couple more years just to find out if the vaccine is effective or not in humans. ...Sigh..


----------



## eleanor_rigby

https://penncurrent.upenn.edu/resea...robes-link-between-cattle-and-crohn-s-disease


----------



## MarkB

Badtummy4 said:


> Any news on the MAP vaccine?


Some updates in this newsletter: http://thecrohnsinfection.org/the-map-gap-newsletter-october-2016/

In addition to the vaccine updates, there's other great reading on new Crohn's research.


----------



## Scared1

Exciting stuff!
http://www.econotimes.com/RedHill-B...-for-Early-Stop-for-Success-in-Q2-2017-336024


----------



## Julia S

Any update on the phase I trials for the vaccine, JMC?

As for the redhill news, I'm not sure if it's good or bad news that interim results will now only be released in Q2 2017...


----------



## Scared1

Julia S said:


> Any update on the phase I trials for the vaccine, JMC?
> 
> As for the redhill news, I'm not sure if it's good or bad news that interim results will now only be released in Q2 2017...


Hi Julia,
On the contrary - very good news if you tuned into their webcast (I did). By increasing their length of the trial - they are able to show greater efficiency because they have a larger sample size, and they are introducing an early stop process for very success results as an option. The interim results are very good and a new paper was published:

"A single capsule formulation of RHB-104 demonstrates higher anti-microbial growth potency for effective treatment of Crohn’s disease associated with Mycobacterium avium subspecies paratuberculosis"


----------



## Julia S

Thanks for the update Scared1. Did they say anything about the current trial? Around 200 people completed half the trial, correct? Was anything mentioned about their progress?


----------



## Zim

Replay of RHB's webcast is available here: http://edge.media-server.com/m/p/mfnetkpw  You can enter any name and email in the registration form in order to gain access to the replay.



Scared1 said:


> The interim results are very good


But in both webcast (around 13:00 timestamp) and in their press-release from October 6 2016 ( http://ir.redhillbio.com/releasedetail.cfm?ReleaseID=992371 ) they state that "RedHill will remain blinded to the interim and ongoing results from the Phase III study". In webcast it was said "of course we'll remain blinded on results  until independent interim analysis in q2 2017". So something is misunderstood.



Scared1 said:


> a new paper was published:
> 
> "A single capsule formulation of RHB-104 demonstrates higher anti-microbial growth potency for effective treatment of Crohn’s disease associated with Mycobacterium avium subspecies paratuberculosis"


Link to the paper itself: http://gutpathogens.biomedcentral.com/articles/10.1186/s13099-016-0127-z

I don't understand why they are so arrogant to make statements about efficacy of RHB-104 in theatment of Crohn's Disease based solely on in vitro studies..



Julia S said:


> Did they say anything about the current trial? Around 200 people completed half the trial, correct? Was anything mentioned about their progress?


Progress of these 200 will be independently analyzed in q2 2017. In the case of overwhelming success study will be finished, otherwise recruitment will continue until the end of 2017 in order to recruit all four hundred something participants. So no info about progress until q2 2017.


----------



## irishgal

Zim said:


> I don't understand why they are so arrogant to make statements about efficacy of RHB-104 in theatment of Crohn's Disease based solely on in vitro studies..


The study you are referring to was not done by RedHill. A different lab used the RHB104 generic forumulation and tested it's effectiveness in vitro. They are not affiliated with RedHill. RedHill is still blinded. 

It doesn't seem like RedHill is making arrogant statements to me. My guess is that of course RedHill thinks this is going to work though. They've had a positive Phase 2 study and keep in mind, this is the basic formulation that Prof. Borody's been using for years with success, and then it was licensed to RedHill for the Phase 3 trial.


----------



## Scipio

Zim said:


> I don't understand why they are so arrogant to make statements about efficacy of RHB-104 in theatment of Crohn's Disease based solely on in vitro studies..


It's not arrogance so much as it is "selling the dream." Small biotech and pharma wannabes do it all the time.  It's part of the way to keep the enthusiasm up and hopefully attract investors. 

We just have to be patient.  Eventually the data will tell the real story.  Data always wins in the end.


----------



## Julia S

I would still very much like to know what's going on with the vaccine. 

Phase I trials were supposed to start earlier this year and were delayed due to a manufacturing pickup. I´d love to know what's the current news on this as the website hasn't been updated in a while...


----------



## DamnitCrohns

Julia S said:


> I would still very much like to know what's going on with the vaccine.
> 
> Phase I trials were supposed to start earlier this year and were delayed due to a manufacturing pickup. I´d love to know what's the current news on this as the website hasn't been updated in a while...


Agreed, they seem to have stopped doing the newsletters now, which makes me think there have been further delays or something.


----------



## xeridea

The Crohn's MAP vaccine effort is pretty unique. They have been crowd-funding part of their effort for a few years now, so there is an expectation from the community that they should be kept in the loop. Yet the CMV folks need to pursue a careful scientific approach if they are to attract serious consideration. I really know nothing, and may be talking out of my hind end, but to me it almost feels like they're stalling to see how the RedHill trials pan out, with some meaningful data slated for the first part of next year.

I wish anyone wishing to crack the Crohn's nut all the success in the world. I take a wait-and-see attitude on the MAP hypothesis.


----------



## JMC

xeridea said:


> I really know nothing, and may be talking out of my hind end, but to me it almost feels like they're stalling to see how the RedHill trials pan out, with some meaningful data slated for the first part of next year.


I don't think that is the case.  I am quite sure if the Vaccine and MAP Test had been ready they would have preferred to get ahead of Redhill, not wait for their results.  Unfortunately, I suspect the silence is not good news.


----------



## Scared1

JMC said:


> I don't think that is the case.  I am quite sure if the Vaccine and MAP Test had been ready they would have preferred to get ahead of Redhill, not wait for their results.  Unfortunately, I suspect the silence is not good news.


I agree JMC, which is unfortunate. I am hoping for some news of SOMETHING in 2017. A relative of mine who is in medical school was sharing some of his notes regarding what he was being taught about IBD - from a top school here in the US. It was all about microbiome shifts and causes being dietary and environmental as big factors, not only nature tendencies (i.e. genetic). I thought that was interesting that is being taught instead of autoimmunity and that's it. Not sure what that means for people who have it, but let's cross our fingers for some trial results in 2017. I am honestly waiting to hear something about QU Biologics SSI, but haven't heard or read not a single thing.


----------



## Anonymous77

Scared1 said:


> I agree JMC, which is unfortunate. I am hoping for some news of SOMETHING in 2017. A relative of mine who is in medical school was sharing some of his notes regarding what he was being taught about IBD - from a top school here in the US. It was all about microbiome shifts and causes being dietary and environmental as big factors, not only nature tendencies (i.e. genetic). I thought that was interesting that is being taught instead of autoimmunity and that's it. Not sure what that means for people who have it, but let's cross our fingers for some trial results in 2017. I am honestly waiting to hear something about QU Biologics SSI, but haven't heard or read not a single thing.


Im a med student near qualifying and we were taught that it was certainly autoimmune, i had a lengthy talk with some of the gastro consultants who all expressed that even if the cause were some infection or antibiotic upset that investigation would definitely not find anything there anymore, the self perpetuating disease is set in motion.


----------



## Mommabear

Scared1, I believe QuBiologics are planning another, bigger trial the first or second quarter of this year. Regarding the vaccine, I don't believe there will be any answers in 2017. Phase 1 is planned to start this January, but it is only on healthy people to make sure it is safe. Phase 2a is planned for the end of the year, but the data will not be analyzed until 2018 (if all goes well).


----------



## Mommabear

Anonymous 77, I don't understand what the GIs are telling you. They think that there can be no chronic infection? If so, how do they explain the mostly positive results people are getting from AMAT?


----------



## Scared1

I agree with Mommabear. I spoke to my cousin and my husbands GI who graduated from Columbia Medical school and they reiterated what I stated. To say that if it is an infection nothing will come of it is a bit strange of sweeping generalization - there have been instances where dysbiosis or attempting to clear the infection whether AEIC, MAPs etc has shown improvement.


----------



## Anonymous77

Im not going into GE so i can only answer speculatively, although they are from a global centre for leading IBD care. The idea is that there is no ongoing infection, just some event, which could be a pathogen,activates a latent immune fault causing autoimmunity to some extent. The initial cause is just temporary but the body is left changed for life. 

It happens a lot in autoimmune disease, some negative event leaves the immune system mistakenly self-targeting and nothing short of autologic stem cell transplant would ever totally relieve this.

One consultant stated on the mycobacteria theory that its not a surprise - every time a new type of pathogen comes to academic interest or a microorganism discovered in the body it is proposed as being behind every disease we dont understand, until the hysteria dies down.

I dont know enough to say if its wrong in this case, and i desperately hope it is the cause and we can all be better - but we aren't really seeing that through trial data as it stands unfortunately.


----------



## Mommabear

Thanks for your long answer Anonymous77.

The thing is, the idea that MAP might be behind Crohn's is not new. I believe even Burrell Crohn thought there was a link. And there is in fact a lot of compelling research pointing to MAP as a culprit, but I think a lot of GIs remain glued to the flawed Selby trial to reinforce their beliefs. It's really weird that they hold onto Selby's conclusions despite the many flaws and despite the fact that remission rates were actually higher than in the Humira trials! I am biting at the bit, waiting for Redhill to publish their results which will hopefully change the landscape, at least in regards to the efficacy of AMAT. 

And how would they explain the test results that are coming back positive, indicating ongoing bacterial presence, both in tissue and in blood? I think this recent paper from October where the patient actually sheds MAP adds to the arsenal: Concurrent Resolution of Chronic Diarrhea Likely Due to Crohn's Disease and Infection with Mycobacterium avium paratuberculosis. (October 2016). 

Also, I thought most GIs were moving away from this idea of autoimmunity. It certainly doesn't explain the massive increase in cases, particularly among children and in Asia. I should think the numbers would remain constant if it were autoimmunity. It's weird that cases would increase so dramatically without some pathogen spreading. In my mind, doctors who blame disease on autoimmunity say that because they don't have an answer. They don't know what else to call it. They should watch Prof. Marcel Behr debunk the autoimmune theory.

I have been looking at Mycobacterium generally and trying to understand it. I am no scientist, so what I understand is probably quite rudimentary, but for people who are infected with Intestinal TB for example, there are so many similarities to Crohn's, including the disease going dormant. But no doctor would argue that a person infected with TB does not have a chronic infection. Also, it seems scientists are just beginning to understand the stealth of these bacteria, hiding deep inside biofilms and escaping detection. The problem is figuring out how to break down these fortresses and getting to them. 

Personally, I will need someone to prove that it is NOT MAP for me to look for another culprit for most Crohn's cases, and perhaps AIEC for others. I feel like it is there, in front of these doctors, but they are like faulty immune systems, unable to see it...


----------



## eleanor_rigby

Anonymous77 said:


> It happens a lot in autoimmune disease, some negative event leaves the immune system mistakenly self-targeting and nothing short of autologic stem cell transplant would ever totally relieve this.


This study found no significant difference between autologous stem cell transplants and conventional therapy for Crohn's: http://jamanetwork.com/journals/jama/fullarticle/2475462


----------



## kiny

Anonymous77 said:


> It happens a lot in autoimmune disease, some negative event leaves the immune system mistakenly self-targeting and nothing short of autologic stem cell transplant would ever totally relieve this.


It doesn't _just happen_ through _some event_. Inflammation is very specific in crohn's disease, it's not like in UC where the whole organ is inflamed, crohn's disease features regional transmural inflammation. Early signs of crohn's disease show inflamed peyer's patches that are exclusive to the ileum.  

There is no self-antigen you can point to in CD, there is no organ wide tissue inflammation, the type of inflammation resembles intestinal TB and Granulomatous Disease, not UC, the mesentery is involved and genetic predisposition point to autophagy defects. AIEC are consistently found in the ileum of CD patients and dysbiosis is a hallmark of the disease. CD is not consistent with autoimmunity. 

There are millions of bacteria active in the ileum, both commensal and increasingly recovered in CD patients, pathogenic bacteria taking advantage of genetic anomalies, those pockets of inflammation seen in crohn's disease are a result of macrophages responding to a microbial antigen and activating T lymphocytes, they are not responding to a self-antigen, crohn's disease does not feature inflammation as seen in UC.


----------



## kiny

Anonymous77 said:


> One consultant stated on the mycobacteria theory that its not a surprise - every time a new type of pathogen comes to academic interest or a microorganism discovered in the body it is proposed as being behind every disease we dont understand, until the hysteria dies down.


MAP targets the ileum in ruminants with Ptb, that's why it's of interest to people who study Croh's disease. It's not_ "proposed as being behind every disease"_, no, it causes patchy inflammation of the ileum and weight loss in cows, the same features you find in people with CD, that's why it's relevant to study, we want to know if there's a possibility of a zoonotic disease in people with CD. 

Genetic predisposition in CD patients also points to predisposition to mycobacterial infections. That's why the relationship between MAP and Crohn's disease is being looked at. Not because of_ hysteria_.

I've been tested multiple times for the presence of MAP, always negative, yet I would never outright discredit the idea that MAP might be involved in some people with CD. There are far too many similarities between Ptb and CD to throw the theory overboard.

Tell the consultant to make an account on the forum.


----------



## Anonymous77

Kiny - Cows and other ruminants have vastly different digestive systems to us, if it was shown in primates it may be interesting but even then i would wait until human trials before getting excited, there are countless pathogens that are damaging in animals and not in us or vice versa. Especially when the disease seems different, with MAP causing ileal inflammation and crohns causing disparate inflammation of all the digestive tract, joints, eyes, potential vitamin synthesis errors and more.

No-one's saying to throw the theory overboard, i was just stating that my experience with the GEs is that they dont retard it likely and they're quite certain it is autoimmune.

I feel there's a desperation here that it isnt autoimmune but rather an infection as this has a better chance of being cured and is less embarrassing - i usually tell people its thought to be an infection for the same reason and i hold out hope this research turns up well, but im not yet convinced.


----------



## Anonymous77

Mommabear -The shedding of bacteria could just be the result of crohns disruption leading to dysbiosis, or just that new sensitive tests are finding normal bacterial presence. It may well be MAP is a commensural, normal organism in many people. More rigorous studies are needed to actually show the relationship.

I agree crohns being a granulomatous degree is reminiscent of tb and i would like more follow up there, but one consultant i talked to there suggested the granulomas would be empty of anything abnormal and that it could be like sarcoidosis, which forms granulomas but is also believed to be autoimmune. 

Immune diseases certainly are on the rise, both autoimmunity and deficiencies - as i said i dont have much GE experience but i was on placement with a researcher working on the effect of xenooestrogens on human health and there's a strong correlation between increasing western exposure to oestrogens, lowering testosterone and rising immune disease. His study was looking more specifically at certain physical disorders but it was a really interesting side point. Our population today is far more afflicted by immune dysfunction than ever before.

You are right that we are only still working out how mycobacteria co-opt and hide from our immune defences and that just saying "autoimmune" seems like a lazy deflection - so i really hope as well that this research turns up positive, but the pace, cancellations, openness and practices of the researchers leaves me suspicious.


----------



## kiny

Anonymous77 said:


> if it was shown in primates it may be interesting



It's been seen in stumptailed macaques and other primates multiple times, see the MAP description I made with links to resources you can read.

It's not about if it's "interesting". It's costing farmers millions, I talk to those people on a regular basis, the same people who test MAP in animals, have vested interest to test the presence of MAP in humans.

Cows shed MAP in their faeces, when a calf is born they get infected, it contaminates the soil and the nearby river aerosol will show the presence of MAP a few weeks later, it seeps into the soil and can contaminate other farms. In a few weeks time the whole dairy farm is infected. For the farmer it often means the end of their business. Cows with Ptb no longer produce enough milk to be economically viable and can not be sold, few nations have government programs to help recoup the cost of Ptb infections. Japan is one of the few nations where a farmer program fully recoups the cost of the lost  cow if it's shown to host MAP, in the West these programs are severely lacking and the farmers ends up paying the bill.

This is reason we have government funded research going into the zoonotic potential of MAP, if MAP is making people sick then it's a worldwide public health crisis. There is no reason to be dismissive about it or to call it "hysteria".

http://www.crohnsforum.com/wiki/MAP


https://www.ncbi.nlm.nih.gov/pubmed/3559275



Anonymous77 said:


> crohns causing disparate inflammation of all the digestive tract, joints, eyes, potential vitamin synthesis errors and more


Typical crohn's disease is transmural patchy inflammation of the ileum and sometimes colon involvement, not _"all the digestive tract"_. We don't call disease that isn't UC but has patchy colon inflammation crohn's disease, we call it crohn's colitis to make the distinction. A name used in the past for crohn's disease and still often used is chronic enteritis, ileum involvement, not just any place.

Inflammation in CD is very specific, during early biopsies you can pinpoint the inflammation down to the peyer's patches, only found in the ileum.

I'm sure there are lots of people diagnosed with CD that don't actually have chronic enteritis, but that doesn't mean that you can paint the disease with such a wide brush and argue that inflammation is present anywhere, it's not.



Anonymous77 said:


> I feel there's a desperation here that it isnt autoimmune but rather an infection...and is less embarrassing


Autoimmunity requires the presence of a self-antigen, which has never been conclusively found in people with CD. All genetic predispositions, ATG16L1, NOD2, even anomalies in vitamin D receptors, activity of the peyer's patches during teenage years coinciding with disease onset, all of those factors point to continued bacterial involvement. They point to innate immunodeficiences and autophagy and APC anomalies. Not to mention the actual presence of bacteria found in lesions, AIEC has been consistently recovered from CD intestinal tissue. That is why bacterial involvement is contemplated, not due to "_desperation or embarassment_".

I'll end the conversation there I think, not too fond of the arguments being used.


----------



## Mommabear

Anonymous 77, I understand your situation. You are a med student, talking to the specialists and I am guessing, not in the best position to argue other points of view with them. (They actually seem rather patronizing) However, I think Kiny made some excellent arguments which I hope will keep your mind open. I also hope you don't judge the validity of MAP based on one project. Once again, borrowing from the experience of TB, there are currently 15 human trials going on right now which are testing vaccines. There have been many earlier ones too. So far, not one has made it to Phase 3, but they keep trying! If the MAP vaccine works, we will all dance on the rooftops, but if it doesn't, it doesn't mean that MAP is not the culprit. It just means that the MAP vaccine, like the other vaccines against mycobacteria, will need more work. I wouldn't throw the baby out with the bath water.


----------



## JMC

Anonymous77 said:


> Im a med student near qualifying and we were taught that it was certainly autoimmune


Crohn's is not an autoimmune disease.  That is an outdated theory which originated in the 1960s and was disproven a number of years ago.


----------



## Anonymous77

Sorry everyone i am away on placement so cant answer very often - ill get round to responding in a couple of days.


----------



## Scared1

New article:

Gut Pathog. 2017 Jan 3;9:1. doi: 10.1186/s13099-016-0151-z. eCollection 2017.
*Mycobacterium avium subsp. paratuberculosis and associated risk factors for inflammatory bowel disease in Iranian patients.*

Zamani S1, Zali MR2, Aghdaei HA2, Sechi LA3, Niegowska M3, Caggiu E3, Keshavarz R4, Mosavari N4, Feizabadi MM5.
*Author information*



1Department of Microbiology, School of Medicine, Tehran University of Medical Sciences, Tehran, Iran. 
2Gastroenterology and Liver Diseases Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran ; Basic and Molecular Epidemiology of Gastrointestinal Disorders Research Center, Research Institute for Gastroenterology and Liver Diseases, Shahid Beheshti University of Medical Sciences, Tehran, Iran. 
3Department of Biomedical Sciences, University of Sassari, Viale San Pietro 43b, 07100 Sassari, Italy. 
4PPD Tuberculin Department, Razi Vaccine & Serum Research Institute, Karaj, Iran ; Reference Laboratory for Bovine Tuberculosis, Razi Vaccine and Serum Research Institute, Agricultural Research Education and Extension Organization (AREEO), Tehran, Iran. 
5Department of Microbiology, School of Medicine, Tehran University of Medical Sciences, Tehran, Iran ; Thoracic Diseases Research Center, Tehran University of Medical Sciences, Tehran, Iran.


*Abstract*

*BACKGROUND: *

 Inflammatory bowel disease (IBD) is described as a relapsing condition with high morbidity and uncertain complex pathogenesis. The association of _Mycobacterium avium_ ssp. _paratuberculosis_ (MAP) with Crohn's disease (CD) in human has been debated for decades, however there is no confirmed data to verify such relations in Iran. The aim of this study was to investigate risk factors and a possible role of MAP in Iranian patients with CD.
*METHODS: *

 Anti-MAP antibodies were detected in serum of IBD patients and subjects without IBD (nIBD) through ELISA; MAP DNA and viable MAP cells were identified in patients' biopsies through nested PCR and direct culture methods, respectively. Principal component analysis (PCA) was used to investigate the risk factors in relation to IBD and MAP infection.
*RESULTS: *

 Positivity for IS900 PCR was detected in 64% (n = 18) of CD, 33% (n = 10) of ulcerative colitis (UC) and 9.7% (n = 6) of nIBD samples. Live MAP cells were isolated from biopsies of 2 CD patients only. Among 28 patients with CD, 46% (n = 13) and 39% (n = 11) were positive for antibodies against MAP3865c133-141 and MAP3865c125-133 peptides, respectively, whereas much lower seroreactivity was detected in UC subjects accounting for 3% (n = 1) for MAP3865c133-141 and 16.7% (n = 5) for MAP3865c125-133. A high immune reactivity to MAP epitopes among CD patients was positively correlated with consumption of fast food meals and IBD familiarity. For both CD and UC, breastfeeding period and consumption of fruit/vegetables presented negative correlation with the presence of anti-MAP antibodies.
*CONCLUSIONS: *

 This study provided evidences that high prevalence of MAP DNA and anti-MAP antibodies in CD patients is significantly associated with the development of CD. Despite the role of several factors contributing to IBD, the presence of MAP DNA and anti-MAP antibodies in Iranian CD patients highlights a possible transmission of MAP from animal-derived products to humans.


----------



## JMC

For the benefit of Anonymous77:

http://www.tandfonline.com/doi/abs/10.1586/eci.12.87?journalCode=ierm20


----------



## xeridea

Julia S said:


> I would still very much like to know what's going on with the vaccine.
> 
> Phase I trials were supposed to start earlier this year and were delayed due to a manufacturing pickup. I´d love to know what's the current news on this as the website hasn't been updated in a while...


On the CMV site's January 2017 Newsletter, they have a section at the bottom giving Research Update. There they say that Phase 1 will open at the end of this month and will be run by the Jenner Institute. Fingers crossed!


----------



## Poppysocks

BOut time. I hope it succeeds. I know that team has worked very hard over the years.


----------



## JMC

xeridea said:


> On the CMV site's January 2017 Newsletter, they have a section at the bottom giving Research Update. There they say that Phase 1 will open at the end of this month and will be run by the Jenner Institute. Fingers crossed!


I look forward to that being independently confirmed as there is stil no mention of the CMV on the Jenner website: http://www.jenner.ac.uk/research-programmes


----------



## eleanor_rigby

JMC said:


> I look forward to that being independently confirmed as there is stil no mention of the CMV on the Jenner website: http://www.jenner.ac.uk/research-programmes


The Jenner institute have now posted about this on their Facebook page: https://m.facebook.com/JennerInstituteVaccineTrials/?locale2=en_GB


----------



## Zim

Good news everyone!

Recruiting of healthy volunteers for phase 1 of MAP vaccine clinical trial has begun!

Participant information sheet here: https://s3.amazonaws.com/trialspark...4ff7eda829b63b964eb1fbb16b21254c4b05859b4.pdf

*Registration form here: https://trialspark.com/trials/hav001oxford
*


----------



## Zim

There will be one more MAP symposium on March 24-25, 2017 in Philadelphia:

http://humanpara.org/2017-map-conference/

From my understanding, Human Paratuberculosis Fundation is new legal structure of http://TheCrohnsInfection.org

Saddened by the fact that attendance is limited to researchers only, as I understood.


----------



## irishgal

Zim said:


> There will be one more MAP symposium on March 24-25, 2017 in Philadelphia:
> 
> http://humanpara.org/2017-map-conference/
> 
> From my understanding, Human Paratuberculosis Fundation is new legal structure of http://TheCrohnsInfection.org
> 
> Saddened by the fact that attendance is limited to researchers only, as I understood.


Thanks for sharing Zim! I've been so busy getting Human Para together that I haven't had time to give out any info here. Yes, there's a conference coming in a month and it is limited to researchers. But that may be good, because they are presenting their research to each other and then doing a working session where they hope to come to some type of consensus on how they will all move MAP science forward. That's REALLY good for patients, and patient participation may come at the expense of having time for collaboration on the part of the docs. I know from this collaboration that they are all still very focused on the patients needs and moving treatment applications surrounding human MAP forward for the benefit of those who are sick.

The organizers of the conference know patients are VERY interested, so they are allowing the Human Para Foundation to come and record all of the presentations and tape interviews with the researchers, which will all be put out on the site as soon as possible. They will all be freely accessible. No one will have to pay to access this content. As soon as we have more info on attendees and presentations topics, I will post that on the HPF conference page.


----------



## brouweke

Hi Irishgal, 

   What do you mean you have been taking an Anti-MAP therapy? Are you referring to the clinical trial in Oxford? Have they already begun phase 1 of the trial or is there still time to register?


----------



## eleanor_rigby

brouweke said:


> Hi Irishgal,
> 
> What do you mean you have been taking an Anti-MAP therapy? Are you referring to the clinical trial in Oxford? Have they already begun phase 1 of the trial or is there still time to register?


I believe she is taking a combination of oral antibiotics similar/the same as what is offered in the Redhill Map phase 3 trial.

The anti-map Vaccine trial in Oxford in in phase 1, which means it is being tested on healthy adults with no illnesses and no Crohn's/IBD to see if it is first safe. Phase 2 trials will begin I think in 2018, which is where the vaccine will be tested on patients with Crohn's disease to see whether it is effective at treating Crohn's.


----------



## brouweke

eleanor_rigby said:


> I believe she is taking a combination of oral antibiotics similar/the same as what is offered in the Redhill Map phase 3 trial.
> 
> The anti-map Vaccine trial in Oxford in in phase 1, which means it is being tested on healthy adults with no illnesses and no Crohn's/IBD to see if it is first safe. Phase 2 trials will begin I think in 2018, which is where the vaccine will be tested on patients with Crohn's disease to see whether it is effective at treating Crohn's.


Thank you for the clarification! Do you know what is the best way to stay up-to-date with the oxford research?


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## eleanor_rigby

I would recommend their Facebook page: https://m.facebook.com/crohnsmapvaccine/?locale2=en_GB


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## Raggyruby

The MAP Vaccine phase 1 trials are in progress on healthy volunteers at the Jenner Institute in Oxford UK. There is no information to suggest that phase 2 will be delayed. Nothing to do with the Redhill trials and results have any effect on the vaccine trial schedule.The newsletter has probably been delayed waiting for certain information that the team would like to include and sometimes getting the information is outside of their control and like everyone else they just have to wait. I do believe a newsletter will be available very soon. Hope this helps, all new information is available on the updated CMV website as it becomes available and on the CMV Facebook page.


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## MoonOz

Hi.
Why didn't they attend 2017 MAP Conference ?


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## Mommabear

MoonOz, 

They were invited but they couldn't make it for personal reasons.


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## Raggyruby

MoonOz as you know the vaccine is in phase 1 trials on healthy volunteers at the Jenner Institute in Oxford Uk. If successful this will be followed by phase 2 on Crohns sufferers at St Thomas Hospital in London early in 2018 although the criteria to be part of that trial has not yet been released.

All of the background work to the trials and the companion Crohns MAP Vaccine diagnostic blood test which has to be peer reviewed and published take up a huge amount of time and at this stage as I understand it Professor JHT felt that his time was better spent in the lab than attending another conference.


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## JMC

Raggyruby said:


> All of the background work to the trials and the companion Crohns MAP Vaccine diagnostic blood test which has to be peer reviewed and published take up a huge amount of time and at this stage as I understand it Professor JHT felt that his time was better spent in the lab than attending another conference.


JHT is over 80 years old, I don't think he has attended conferences for many years now


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## Raggyruby

Yes he is. His daughter Amy Hermon-Taylor stood in for him in last years conference in Chicago for the same reason he didn't attend this year.


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## xeridea

Thinking out loud here. But how would a vaccine help if you already have CD? Isn't a vaccine intended to help your immune system learn to recognize how to fight a foreign antigen when it first encounters it? What about the case where you're already exposed to the disease, and your immune system just can't figure out how to cope with it? How does the vaccine strengthen your immune system to fight something it has failed to stave off already?


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## Deleted member 431298

xeridea said:


> Thinking out loud here. But how would a vaccine help if you already have CD? Isn't a vaccine intended to help your immune system learn to recognize how to fight a foreign antigen when it first encounters it? What about the case where you're already exposed to the disease, and your immune system just can't figure out how to cope with it? How does the vaccine strengthen your immune system to fight something it has failed to stave off already?


This explanation is copied from the map vaccine website


_Mechanism of action: The vaccine is what is called a ‘T-cell’ vaccine. T-cells are a type of white blood cell -an important player in the immune system- in particular, for fighting against organisms that hide INSIDE the body’s cells –like MAP does. Many people are exposed to MAP but most don’t get Crohn’s –Why? Because their T-cells can ‘see’ and destroy MAP. In those who do get Crohn’s, the immune system has a ‘blind spot’ –their T-cells cannot see MAP. The vaccine works by UN-BLINDING the immune system to MAP, reversing the immune dysregulation and programming the body’s own T-cells to seek out and destroy cells containing MAP. For general information, there are two informative videos about T Cells and the immune system below._


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## JMC

OleJ said:


> This explanation is copied from the map vaccine website
> 
> 
> _Mechanism of action: The vaccine is what is called a ‘T-cell’ vaccine. T-cells are a type of white blood cell -an important player in the immune system- in particular, for fighting against organisms that hide INSIDE the body’s cells –like MAP does. Many people are exposed to MAP but most don’t get Crohn’s –Why? Because their T-cells can ‘see’ and destroy MAP. In those who do get Crohn’s, the immune system has a ‘blind spot’ –their T-cells cannot see MAP. The vaccine works by UN-BLINDING the immune system to MAP, reversing the immune dysregulation and programming the body’s own T-cells to seek out and destroy cells containing MAP. For general information, there are two informative videos about T Cells and the immune system below._


That does not explain whether it would be an effective therapy for people who already have MAP infection rather than just a preventative vaccine.  As far as I know, there a very few (possibly none) other examples of a therapeutic T-cell vaccines currently approved for use. Additionally, there haven't been any trials of CMV in cattle with established Johnes disease which might prove this as an effective therapy.


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## Deleted member 431298

The claim is that the vaccine works by enhancing immunogenicity (immune response) to the MAP infected cells. I guess that would mean its mechanism of action allows it to work in people that are already infected. 
In theory. It will be interesting to follow if it works in practice.


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## Raggyruby

Xeridea, yes the vaccine is intended to be both preventative and therapeutic. As OleJ has already answered you can find all of the answers to your questions on the very clear and easy to navigate CMV website. 
www.crohnsmapvaccine.com there is further information on www.hav-vaccines.com 
There is also a support group on FB if you have further questions Crohn's MAP Vaccine-Fundraising and Support Group.


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## mtseeg

eleanor_rigby said:


> I would recommend their Facebook page: https://m.facebook.com/crohnsmapvaccine/?locale2=en_GB



They also have a Twitter page that's regularly updated:

https://twitter.com/CrohnsVaccine


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## JMC

OleJ said:


> The claim is that the vaccine works by enhancing immunogenicity (immune response) to the MAP infected cells.


A reasonably large body of evidence has been published showing that Crohn's patients have an immune deficiency which could impair the handling of intracellular pathogens such as MAP.  If that is the case, there must be a high chance that a Crohn's patient would not respond to stimulation by vaccine in the same way that a "healthy" person might.  In other words, the vaccine could be effective, yet still not work on the small minority of the population who have Crohn's.  The real problem here though is the gap between the claims and experimental evidence - lots of impressive claims are being made with little or no experimental evidence to back it up.




			
				OleJ said:
			
		

> I guess that would mean its mechanism of action allows it to work in people that are already infected.
> In theory. It will be interesting to follow if it works in practice.


There have been lots of attempts to create MAP vaccines - just search on PubMed, the majority are targeted at Johnes disease and most (if not all) have failed to produce lasting immunity.


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## mtseeg

There are at least two Johne's disease vaccines still on the market:  one contains live virus, the other is dead.   The latter is sold in the U.S. under the trade name, Mycopar.

https://www.drugs.com/vet/mycopar.html

Also here's a link on the livestock variants.


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## Crohn2357

xeridea said:


> But how would a vaccine help if you already have CD?


The same question can also be directed towards the Qu Biologics SSI trial, though I can't remember if the E. Coli they've been using is an intracellular one or not.

Personally, I'll have a second resection surgery in a few months, and I'm waiting to see what the upcoming announcement of the RHB-104 trial will reveal. I will proceed depending on that announcement.


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## JMC

mtseeg said:


> There are at least two Johne's disease vaccines still on the market:  one contains live virus, the other is dead.   The latter is sold in the U.S. under the trade name, Mycopar.
> 
> https://www.drugs.com/vet/mycopar.html
> 
> Also here's a link on the livestock variants.


Problem is, they don't work which is why this is still such an active research field


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## Raggyruby

Once Jenner have published their findings on phase 1 on healthy volunteers and phase 2 is called, activated, concluded and published as well we will finally have the answers we need.


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## Deleted member 431298

Crohn2357- I am sorry the hear you will perhaps need another resection. 
Do you usually have elevated calprotectin I wonder? I have read studies that conclude high calprotectin indicate a mycobacterium infection (as I wrote in another thread).


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## mtseeg

JMC said:


> Problem is, they don't work which is why this is still such an active research field


Interesting.  Would you mind posting links to some of the studies indicating these approved vaccines for livestock do not work on the livestock for which they are targeted?   The second URL I provided illustrates that they are indeed effective, but I'd like to get a more rounded viewpoint from the scientific community.


From the article:



> "Vaccination not only delayed the onset of fecal shedding, but reduced mortality attributed to Johne's disease by 90% in the 200 vaccinated sheep. Silirum is a killed strain of MAP, also related to 316F, that has been tested in Australian cattle.  This vaccine has recently been shown to reduce prevalence of clinical disease, as measured by lymph node pathology and fecal culture at slaughter.


 Click here for article source


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## Crohn2357

OleJ said:


> Crohn2357- I am sorry the hear you will perhaps need another resection.
> Do you usually have elevated calprotectin I wonder? I have read studies that conclude high calprotectin indicate a mycobacterium infection (as I wrote in another thread).


Statistics say the great majority of Crohn's patients will eventually need to undergo _at least one_ surgery during their lifetime.[1]

I have been tested for fecal calprotectin during the early days of my diagnosis, it was used more of an additional diagnostic tool, and the results were always high. I don't know if it indicates the presence of a mycobacterium infection or not. Even if it does, I don't think it would be the only reason for the elevated levels.

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2976865/pdf/GH-06-587.pdf
http://www.ioibd.org/wp-content/uploads/2012/09/Surgery-and-hsopitaliz-in-Crohn-Gut-2012.pdf
http://www.crohnscolitisfoundation.org/resources/surgery-for-crohns-uc.html


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## JMC

mtseeg said:


> Interesting.  Would you mind posting links to some of the studies indicating these approved vaccines for livestock do not work on the livestock for which they are targeted?   The second URL I provided illustrates that they are indeed effective, but I'd like to get a more rounded viewpoint from the scientific community.
> 
> 
> From the article:
> 
> Click here for article source


I will dig out the review papers later when I am at a computer at home. To summarise, the problem is that the effect of vaccination is transient - short term improvements fail after a number of months so animals are never cured and is why vaccination (at least LAV) has not eradicated MAP as a problem in the agricultural industry.


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## JMC

From July 2016: *Development of vaccines to Mycobacterium avium subsp. paratuberculosis infection*


_A variety of ideas for designing novel vaccines have emerged, and the tests of the efficacy of these vaccines are conducted constantly. However, no effective vaccines are commercially available._

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4969274/


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## Deleted member 431298

Crohn2357: _Even if it does, I don't think it would be the only reason for the elevated levels._

I am curious to know if you have any references to what other causes of Calprotectin rises there are, apart from mycobacteria? I read that NSAID an alcohol could cause slightly elevated levels, but not more than 300 ug/g. According to wikipedia calprotectin has bacteriostatic and fungistatic properties in vitro, but the specific kinds of fungi and bacteria is not mentioned. Also, that these properties come from an ability to sequester manganese and zinc.
Maybe elevated calprotectin is not just a bad thing, but an indication of the body working to get rid of an infection? Zinc supplement is sometimes discussed here  as a helpful supplement with CD.


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## Crohn2357

OleJ said:


> According to wikipedia calprotectin has bacteriostatic and fungistatic properties in vitro, but the specific kinds of fungi and bacteria is not mentioned.


Exactly.


Quoting from the Aronofsky's Pi (1998):
"When your mind becomes obsessed with anything, it filters everything else out and you will find that thing everywhere in nature."



OleJ said:


> I am curious to know if you have any references to what other causes of Calprotectin rises there are, apart from mycobacteria?


Just read a general article about calprotectin in pubmed, you'll see the answer. Calprotectin isn't even specific as a digestive system marker (let alone being specific to immune system's encounter with mycobacterium), so "fecal" calprotectin doesn't have any distinction from elevated levels of calprotectin found in other tissues.

Calprotectin – *a Pleiotropic Molecule* in Acute and Chronic 
Inflammation


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## Deleted member 431298

_Quoting from the Aronofsky's Pi (1998):
"When your mind becomes obsessed with anything, it filters everything else out and you will find that thing everywhere in nature." _

Well, OK. Let us give this topic a rest then. 
The thread is about the MAP vaccine anyway.


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## deedee714

ok


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## Crohn2357

The Consensus from the Mycobacterium avium ssp. paratuberculosis (MAP) Conference 2017


RedHill Biopharma Accelerates RHB-104 Phase III Study in Crohn’s Disease with Top-Line Results Expected Mid-2018


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## Crohn2357

The Anti-MAP Therapy Support Group


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## Guerrero

Mongersen a new biologic that was presented as a possible new drug for crohn's showed lack of efficacy and his testing has been stopped.

I hope anti map vaccine will work then. We need a cure!


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## crohninator

This is what I think about the vaccine. Its actually my last hope.


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## ronroush7

Amen to we need a cure.


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## Deleted member 431298

Second that.
And until that happens I for one will stay clear of dairy and cow's meat out of precaution. 
There is just too much circumstantial evidence around now to ignore the possibility that the MAP present in our food chain is triggering and maybe also perpetuating the inflammation cascade.

A) we know MAP is present in pasteurized milk, cheese, and similar products:

B) we know animals get very sick and die from MAP causing a CD-like condition

C) we know (some of) the CD genes are linked to how the immune system deals with mycobacteria


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## crohninator

Problem is quite simple: symptomatic medications work in mild cases (in some cases). They do not work for "real" Crohns. But nevertheless this fact doesn't really care anyone and everybody is pretending an "intact world" where we can "controll the disease" and it has "lost its horror". 
NO IT HASN'T LOST ITS HORROR - THIS IS ONLY TRUE FOR PHARMCOMPANIES AND THE MAJORITY OF DOCTORS. You cannot control any disease without treating the cause.


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## wildbill_52280

I thought this study would be important to understanding the relationship with map and the  microbiome. 
https://www.ncbi.nlm.nih.gov/pubmed/27494144

My stance is that the pathogen map was not as important as the diversity of the microbiome as a whole, and the no cure would be achieved by eradicating map, but restoring the natural diversity of gi microbiome with perhaps a fecal transplant would be a real cure.


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## Deleted member 431298

I agree wild_bill - Several factors seems to lead to that conclusion:
- The RedHill study results found that targeting MAP only led to at partial resolution
- Other bacteria/fungei are strongly implicated in the CD cascade (Candida Tropicalis, E.coli, Serratia marcescens)

This picture better match up with the hypothesis that the microbiome is changed and/or has undergone a reduction in diversity, which promotes the presence of many different kinds of pathogens, and results in inflammation. 

Reasons? ... 
Maybe the stupid binge drinking that is part of western culture (which I for one have had my fair share of right around the time I got CD).
Maybe the "dead" foods we eat / lack of live (fermented) foods
Maybe the food additives and pesticides in our food
Maybe something else, or maybe all of the above 

Regardless, it does make alot of sense to start studying how one can best restore and sustain a healthy microbiota - and FMT is a very interesting study object indeed!


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## wildbill_52280

OleJ said:


> I agree wild_bill - Several factors seems to lead to that conclusion:
> - The RedHill study results found that targeting MAP only led to at partial resolution
> - Other bacteria/fungei are strongly implicated in the CD cascade (Candida Tropicalis, E.coli, Serratia marcescens)
> 
> This picture better match up with the hypothesis that the microbiome is changed and/or has undergone a reduction in diversity, which promotes the presence of many different kinds of pathogens, and results in inflammation.
> 
> Reasons? ...
> Maybe the stupid binge drinking that is part of western culture (which I for one have had my fair share of right around the time I got CD).
> Maybe the "dead" foods we eat / lack of live (fermented) foods
> Maybe the food additives and pesticides in our food
> Maybe something else, or maybe all of the above
> 
> Regardless, it does make alot of sense to start studying how one can best restore and sustain a healthy microbiota - and FMT is a very interesting study object indeed!


According to research: low fiber diet, antibiotics in meat, antibiotics in medical system, vitamin d deficit, emulsifiers that are in most processed foods and all fast food, titanium dioxide food coloring, possibly omega 6 fats. Also factors that stop the restoration of the microbiome like avoiding bacteria too much, we need to be exposed to some degree and build up a diversity but most of this is done when we are born and then breast fed but babies have a knack for putting everything in their mouths so nature makes this pretty easy.


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## xeridea

I've been away awhile. Was going crazy before, grasping at straws. Checked recent developments on this site. Same churn. Nothing new. That's disappointing. Nothing seems to have happened for over a year. Damn it! I'll check back again. Next year.


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## Crohn2357

Hey, welcome back. 



xeridea said:


> Same churn. Nothing new. That's disappointing. Nothing seems to have happened for over a year.


I am assuming you have seen the results of the RHB-104 trial. Regardless of the results, that study is a significant event in our waiting for a new promising treatment. 

I'd be interested in reading your view on the results of it (though it's not published in a journal yet). There's been a big hype surrounding the map hypothesis, a possibility of treating the "cause", and the treatment having at least a significant remission rate distinct from the other treatments.

Check out these links to read about it: https://www.crohnsforum.com/showthread.php?t=82362&page=5
https://www.healingwell.com/community/default.aspx?f=38&m=4044862


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## Mommabear

One of my big fears is that if the vaccine fails, many people will believe it will be a reflection on the MAP theory and not simply that the vaccine didn't work (like all of the TB vaccines, which from my count there have been over 20)? Nobody questions TB of course. I hope that I am needlessly worrying and that people know there has never been a therapeutic vaccine that has ever worked except for the recent Hep C one.


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## rollinstone

Keep praying guys, there is still hope. As disheartening as it is to hear the rhb104 didn't blow all other meds out of the water, at least it's an option outside of immunosuppressive alternatives. I personally have tremendous hope in the SSI vaccine by qu biologics, and believe that their current 56 week trials will demonstrate a cure.


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## Mommabear

My fingers are crossed too rollinstone! I like that they are moving forward, that they have funding (HUGE plus!!!) and that they are looking into why some respond when others take longer to respond or simply don't ... whether a person has been on anti-TNFs. I really like that they have done genetic profiles and can see a pattern with those who have responded. All of those things will help refine this treatment. Plus, they are incredibly nice people!!!


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