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

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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.
 
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.
 
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.
 
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.
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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.
 
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.
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Yes, I have already tweeted him about this. I will try again once the MAP Vaccine website is up.
 
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.
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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!
 
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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.
 
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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.
 
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.
 
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.
 
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
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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.
 
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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.
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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.
 
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.
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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.
 
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.
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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.
 
WelshGuy said:
The issue is what condition is the digestive system in before actually developing Crohn's
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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.
 
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".
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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.
 
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.
 
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.
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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.
 
WelshGuy said:
Then i wonder what does the immune system have in a healthy patient that a crohn's patient does not.
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"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.
 
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.
 
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.
 
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.
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I don't suppose there is an actual way to solve these deficiencies in patients some how ?
 
WelshGuy said:
I don't suppose there is an actual way to solve these deficiencies in patients some how ?
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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.
 
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.
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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.
 
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.
 
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.
 
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.
 
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.
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Doesn't Crohn's lower your ability to absorb Vit D? So its even more difficult at that point to keep levels up.
 
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.
 
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.
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Oral absorption? Not sure. But VDR polymorphism is linked to crohn's disease. It's a Vitamin D receptor.
 
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.
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Yes, there aren't detailed info about it.
 
kiny said:
Oral absorption? Not sure. But VDR polymorphism is linked to crohn's disease. It's a Vitamin D receptor.
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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?
 
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.
 
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?
 
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.
 
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.
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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.
 
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?
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Don't know anything about that sorry.
 
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.
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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 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
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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....
 
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
 
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
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Thank you.
 
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.
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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.
 
@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!
 
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....
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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.
 
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.
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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!
 
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.
 
Individual Crohn's MAP vaccine fundraising campaigns about to start:
Take a look on Facebook: Crohn's MAP Vaccine Heroes and join!
 
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.
 
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.
 
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.
 
MAP grows very slowly, it is likely to take several years between exposure and illness appearing.
 
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!
 
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?
 
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
 
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.
 
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.
 
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
 
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?
 
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.
 
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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.
 
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...
 
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?
 
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.
 
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!
 
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!
Click to expand...

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

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

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.
 
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: 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
 
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!
 
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.
 
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.
Click to expand...

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)
 
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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!
Click to expand...
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.
 
Karma said:
IMHO it'd be good to have some kinda of 'totaliser' on the crohns map vaccine website.
Click to expand...

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?
 
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.
 
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.
 

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