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

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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!
 
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?
 
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?
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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.
 
JMC said:
Getting closer :)

http://crohnsmapvaccine.com/testing-the-map-test/
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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.
 
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.
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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.
 
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/
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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.
 
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 :)
 
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.
 
these new developments are really encouraging... wish Dr Taylor all the best for the new MAP TESTing tests
 
Mattie said:
Do you have an update for us JMC? Did you manage to get your blood test results yet?
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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.
 
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/
 
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?
 
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.
 
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?
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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.
 
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.
 
happy poo poo said:
This is great news….has JHT tested any healthy people?
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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/
 
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.
 
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.
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According to the vaccine site, Phase I trials are starting June of this year.
 
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:)
 
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.
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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.
 
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.
 
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.
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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.
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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."
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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?
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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.
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Totally agree. Quite possibly, it would assist in a large subset of Crohnies.

Best to you!
 
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.
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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.
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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.
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Crohn's isn't autoimmune, we need to stop referring to it as such as it is holding back research progress
 
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.
 
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.
 
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.
 
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.
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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?
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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.)
 
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.
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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?
 
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.
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Would it be ok to ask, what are you supplementing and what is your goal in regard of the serotonin levels ?
 
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...
 
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?
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Don't blame the doctors, after all, they're only practicing medicine.
 
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...
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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.
 
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.
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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.
 
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. ...
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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.
 
xeridea said:
According to the vaccine site, Phase I trials are starting June of this year.
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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.
 
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.
 
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.
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Wow, this is outrageous! I would be very interested if someone could trace who had bought those domain names.
 
JMC said:
Wow, this is outrageous! I would be very interested if someone could trace who had bought those domain names.
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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.
 
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:)
 
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!
 
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.
 
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.
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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.
 
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.
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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.
 
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:)
 
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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.
 
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?
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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.
 
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.
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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.
 
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.
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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:)
 
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.
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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.
 
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.
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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.
 
I'd really welcome your opinions please. Given the choice between infliximab and AMAT, which would you choose, and why?
 
Mattie said:
I'd really welcome your opinions please. Given the choice between infliximab and AMAT, which would you choose, and why?
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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. :)
 
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.
 
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.
 
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.
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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 - 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!
 
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!
 
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.
 
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.
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<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!
 
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.
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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.
 
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!
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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.
 
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!
 
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.
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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 [email protected] 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.
 
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.
 
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!
Click to expand...


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
 
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. ...
Click to expand...

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?
 
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.
Click to expand...

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....
 
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. ...
Click to expand...

Good point. I note Irishgal's post, re. Dr. Borody reached a similar conclusion. He's a real doctor! Good luck!
 
MarkB said:
Good point. I note Irishgal's post, re. Dr. Borody reached a similar conclusion. He's a real doctor! Good luck!
Click to expand...

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?
 
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?
Click to expand...

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.
 
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.
Click to expand...

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...
 
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.
Click to expand...

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..."
 
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..."
Click to expand...

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.
 
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.
Click to expand...

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:

milk+consumption+map.png



Crohn's incidence map:

ibd_map.png



Another Crohn's incidence map:

780922-fig1.jpg
 
InstantCoffee said:
There's still problems implicating MAP, like that many people present with and have consumed MAP without becoming symptomatic.
Click to expand...

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.
Click to expand...

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.
 
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:
Click to expand...

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”.
Click to expand...
 
InstantCoffee said:
...
What does AMAP therapy do? It kills bacteria indiscriminately.
...
Click to expand...

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.
 
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.
Click to expand...

It is ridiculous that US is one of the only developed nations that doesn't try to control MAP / Johne's disease.
 
InstantCoffee said:
It is ridiculous that US is one of the only developed nations that doesn't try to control MAP / Johne's disease.
Click to expand...

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.
 
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!
 
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?
 
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.
Click to expand...


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.
 
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.
 
:)
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
 
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.
 

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