Anyone have success and remission from anti MAP THERAPY.

Well, you can finally go here now if you would like to be tested for MAP:
www.crohnsmanagement.com So you send your blood sample to them and they will do the testing.

This way you know what you are, or are not dealing with. If you test positive then you would treat accordingly.

There were a few people that post from time to time on here that I believe are undergoing anti-MAP therapy via triple antibiotics. But they are hard to come by. You may find more success on one of the other Crohn's boards. I just can't think of the board... The blue board... Old Mike knows as he is active on that site as well. If I find out the name I will post it here for you.

Ha, I don't know. They have a ton of resources and lots of information and discussions.

Here is the link www.crohnsforum.com

Just type in AntiMAP therapy and you will find some older threads on people taking it or perhaps start a new thread asking for updates.

I have been wondering what I will do - If my tests come back positive from the lab above. Will I go the triple antibiotic route? Or will I stay with what I am currently doing. And what will I do if it's negative.... My family doctor read through the Crohn'sMAP vaccine website and has picked up a lot of interest in the topic.

I could have tried anti-MAP therapy, but decided against it. My GI only knew of people who had been on it. For one it didn't work at all, for the other they got into remission for 6 months then flared up. He was still willing to try it, but I just thought I didn't have 2 years to waste with that nonsense. Got surgery intead.

I think MAP has been a red herring for decades. At the very least the triple-antiobiotic MAP therapy is pointless, because the MAP bacteria is extraordinarily hard to eradicate and there are a million ways you can be re-infected with MAP. Maybe the vaccine might be more helpful; I am actually kind of interested in that.

CM, to your question, I wouldn't rock the boat if it comes positive. Wait for map vaccine or at least complete results of Dr. Naser's RHB-104 research. That RHB-104 may be much better than previous triple cocktails.

And, remember the research saying azathioprine, vitamin d, vitamin a and oregano oil are either directly or indirectly effective against MAP.

I think l would do like NCOT suggests - hold out for the vaccine if (it ever get's to trials) and try that. I'm not keen on indefinite antibiotics. But who knows... The lure of eating anything again is pretty strong. The red hill thing is interesting. But like NCOT says, you really can't avoid re-infection.

At the end of the day the vaccine is most important. It will either work or won't and the trials will hopefully put an end to the MAP thing one way or the other. Either way it's a win/win in a sense.

EDIT and yes xyz, I spoke to the researcher/tester about that. He also told me that in a lot of cases they do in fact grow MAP from the blood of Crohn's Patients. So cause or no cause, this is something that needs to be dealt with when cultured. Blood born bacteria is not a good thing. It's a systemic infection that could be the cause or an aggravating factor. He also told me that in a lot of cases they grow MAP from blood of Crohn's patients, BUT that when they test this MAP with PCR it does not register or cannot be molecularly identified as MAP. So they are trying to figure this out. Is it a different strain of MAP? Are other mycobacteria involved or well... So part of what they are doing is trying to figure things like this out. I believe he said it's definitely MAP (visually), but cannot be identified as MAP.

Post Edited (Canada Mark) : 6/2/2015 12:38:46 PM (GMT-6)

I don't know about the post above but it seems more like an add to me.... for some story that has been posted a bunch of times on various threads. Also you need to pay for it. So maybe someone should check it out "Admin" wise.

In any case here is a resource on Triple Antibiotic Therapy I stumbled on tonight kinda by accident:

/anti-map.org

It is a very new site but there is some people posting (even over the last day or so) about their blood work results from MAP testing and their effects of treatment with triple antibiotics (both good and bad) etc. I would imagine over time more and more will migrate to trying the therapy and begin posting on the site above as it is specific to those undergoing triple antibiotic therapy for Crohn's.

I would think that speaking directly with patients undergoing Triple Antibitic Therapy would give a somewhat unbiased look at the the therapy entails, some successes and no so successes and what others concerns are.

Hope it helps any interested or searching for further information.

Hi Pearl,

I see. Sorry about that. I went back for another look this morning upon reading your response. Interesting concept in general - pay per story. Though I will say when you first hit the site it truly does come across like some sort of "cheesy add" with payment logo's on the side - especially when simply scrolling/glancing through. These days one tends not to read and absorb so much as simply quick scan a website. The layout just triggered that "iffy add type" feeling in me. Perhaps it does not in others. No offence intended, just an initial visual perception thing on my part versus traditional more formal news and journal type sites.

However spending time and going through and learning about the concept yields some interest.

I scrolled through some of the articles and as a fellow Canadian I found not only the MAP story you suggest as interesting of course, but the one on how NASA turned to the University of Toronto to solve what appears to perhaps be the re-entry math problem with the Apollo 13 mission. I have never heard of this before, nor have I ever seen it mentioned in any literature. Interesting.

In relation to MAP it looks like there is two stories - One written by Dr. Collins which might be of interest to many.

Doctor Collins is also a speaker at this upcoming event in August of this year in the Chicago area which may be of interest to some crohnsmap.ticketleap.com/symposium/

Perhaps I'll bite the bullet and spend the $1.20 for all three tonight :)

Hi All - I came across this by accident, and saw you were interested in my posts on the other forum about AntiMAP treatment. I know it doesn't work for everyone, but it worked amazingly for me. I've had Crohn's for 25 years and nothing worked well. I'd get sick, get slightly better, get really sick, pretend I wasn't sick, change my diet, get better, etc. I'm sure you've all been there! In any case, after Remicade failed and I had nothing left, I bit the bullet and went on AMAT with my local integrative health doc and Dr. Chamberlin's guidance. I went from barely being able to get off the couch with a super strict diet to full remission in 6 weeks. Granted, the first 2 I felt like I had a horrible flu while the bacteria died off, but eventually got better little by little and have been good since Jan 2015.

I helped with the Chicago symposium and work on maintaining a site for people to find out all the info it took me months research, plus all of the additional unique content from the symposium presenters. It's at TheCrohnsInfection.org. You'll find info on the vaccine, John Aitken's lab, other AntiMAP patient stories and in a day or two, the symposium replay will be released and you can hear the talks yourself! They will be free. A MAP related forum is coming soon too. So if you want info on MAP, it's available, and probably more than you ever wanted!

Someone commented above that AntiMAP may be a pointless therapy because of reinfection. While it is ubiquitous in the environment, I avoid milk, (liquid and powdered, like cocoa mix) soft uncooked dairy (think sour cream, cream cheese and ricotta), and raw cheeses. Everything else I eat. The primary source is via pasteurized dairy, so by limiting my exposure, I hope to limit reinfection. If you watch the videos, you will find that the version of MAP in humans is a mutated strain. John Aitken calls is Son of MAP. Testing has issues due to this. I'm confident John knows what he's dealing with though.

Someone else mentioned the bestory.ca articles. They are awesome. TONS of great, researched info for 40 cents. Plus, they're written so anyone can understand them. I read the one about Dr. Borody and found it in line with all I've researched. Well worth the cost. I have Dr. Collins' article in the queue next.

Most importantly, if I can help anyone who wants to know about my story or to discuss MAP, I'm happy to try to help. I'm not a doc, and I'm amazed at how much I learn every day just by reading the research. My only goal is to give people the knowledge they need to make their own choices about their care with the help of their doctor. My own path was much more difficult, and so I'm trying to help others since I know what Crohn's does to your life. I have zero financial interest in the site, or anything MAP related! Be well friends.

Hi Pearl - yes she mentioned the new article. Very excited to read it! Your other work is excellent. Thanks to you too for getting the word out! It's all about giving people the information they need to make the right choice for them. We can do more when we all work together! Best to you.

Hi All:
Just to let you know that as of October 23, 2015, you can find Stacey Sturner's report about the Crohn's symposium held in Chicago in August 2015 at: https://www.beststory.ca/?page=fromeditor

Stacey gives an extensive summary on the research of Dr. John Hermon-Taylor for a vaccine to combat the MAP bacterium found in most Crohn's patients, including the fact that Phase I trials of the vaccine in humans are expected to begin in June 2016 in the United Kingdom.