Successes with anti-MAP / RMAT anyone?

I know this has been posted before, but I want to hear about any successes with this therapy. I am considering Methotrexate vs. Tysabri vs. Anti-map. My GI doctor doesn't seem too fond of anti-map, but I'm thinking it might work better for me since Cipro has been the only drug that I have responded to. Oh, and I am scared of Tysabri. Thoughts?

Hi Nanners: Thanks for your reply. I actually was on Xifaxan for about 6 months last year after a taper off of 60mg of Prednisone. I found that it worked for me for a few months, then stopped completely. I am back on Cipro, which is working better than Xifaxan, but I am certainly not in remission by a long shot.

Xifaxan is definitely worth a shot. Good luck to you too.

I don't really understand why every time anti-map treatment is brought up on this forum, the thread is either locked, posts are deleted, or misinformation is put forth. People seem so uptight and negative about the subject. If there were one right answer to the Crohn's problem then I could understand it but different things work for different people so why aren't we open to all ideas? What is everyone afraid of??

No where have I ever read that anit-map is the answer to everyone diagnosed with Crohn's. MAP can be in milk, dirt, water & meat and some people may be sensitive to it and others tolerate it. I wish I had all the answers but no one can rule it out as a possibility for SOME people with Crohn's. Unless you don't have all the facts.

If antibiotics help YOU, it is all the more reason to believe anti-map (which is a combination of antibiotics) could help. There are so many different variations of antibiotics used with different doses and the length of times taken for Crohn's treatment that it's hard to compare successes with failures.

My daughter started anti-map treatments with Dr. Chamberlin in mid December, 2009. She had a colonoscopy at that time which showed inflammation and ulcers. Unfortunately, she had a reaction to 6MP in the past and to this treatment where her white blood count kept going extremely low. Every time this happened, she would have to go off the treatment for 1 week. Two weeks ago, she had another colonoscopy and all the inflammation is gone. The local doctor came out after the procedure and said there was no Crohn's. I was flabbergasted. He said he wondered if she ever had Crohn's. I showed him the pictures from the December colonoscopy and he said that could be irratation from bowel prep. It seemed ridiculous to me. She has Crohn's. She has had a resection with lab reports, she has been diagnosed at the Cleveland Clinic and in previous local colonoscopies. Luckily, my daughter has had the same surgeon since 2003 and he agrees that she has Crohn's but he thinks the GI doctor doesn't want to acknowledge that the anti-map treatment may have cleared things up. The GI doctor seems upset that we tried this treatment even though all the conventional treatments failed. It's the craziest thing. Who cares what did it if the inflammation is gone? I have heard similar things happened years ago with the antibiotic treatment for ulcers when doctors didn't want to believe in that either.

My daughter's surgeon has now put her back on Xifaxan again which she was taking before anti-map and having some success with but she's now on a higher dose of 1200 mg./day. There are no side effects with it for her other than night sweats for now. But all I can say is antibiotics have worked for her. You may want to try a higher dose of Xifaxan too.

mastersmom, wow! Your story is powerful! How wonderful that the treatment has worked for your daughter!

I also echo your concerns--all of them--that you expressed.

The doctor is substituting Xifaxan for the anti-map treatment that lowers her white blood count. Just because she doesn't have inflammation now doesn't mean it won't reoccur.

Mastersmom, that is wonderful news about your daughter. my personal beliefhas always been that Crohn's is not a single disease. It seems like Dr Crohn just grabbed the entire digestive tract and said "anything that happens from entry to exit belongs to me" that is a big stumbling block in treatment, i think. in another post someone said that because the acid in our stomachs is different than the acid in our bowels, it couldn't be a similar situation. well, how is it that crohn's shows up in our mouths, also different than bowels? it's not one disease

Mastersmom the only reason a post gets locked is if it gets too political or others start flaming and attacking another poster for there opinion. This post will be allowed to stay as long as everyone respects the forum rules and eachother.

Diet Coke - If you talk with Dr. Chamberlin and decide to go, I would be willing to tell you our experience with hotels, etc. We traveled 1600 miles from Ohio and I usually don't venture outside my neighborhood. It was a big deal for us too. I can tell you though that Dr. Chamberlin is very caring and has been in constant contact with us since we were there. My daughter also falls into the category of 'complicated' because things don't work well for her either. That is why we were desperate enough to make the trip. I will also tell you that this treatment can make you very sick for weeks--like you have the flu and more. From others I have talked with, that seems to be when it is most successful.

The last two drugs left for my daughter were also Methotrexate and Tysabri. She said with her past experiences with drugs, she is not willing to chance Tysabri and the brain side effect. She did so well on the lowest doses of Xifaxan, we just thought it made sense for her to try another antibiotic treatment.