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Regular Member

Date Joined Dec 2009
Total Posts : 44
   Posted 12/28/2009 9:13 PM (GMT -7)   
Hi, I'm new here. My 14 year old daughter has crohns, diagnosed 2 years ago. I was wondering if anyone here has tried RMAT therapy. It is a combination on antibiotics which is said to kill the MAP bacteria. I read that 70% of crohns patients have MAP Bacteria which they probably got from drinking contaminated milk(from cows with Johne's disease) She is currently on prednisone from a recent flare. She has been on SCD diet and pentasa and LDN, and did well for the last year with this. She had been cheating on her diet and I think that this is why she flared. Anyway, I'm researching to see if I can come up with something better and ran across the RMAT therapy info. Just curious to know how many have tried it and with what degree of success. Thanks Diana

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 12/29/2009 12:09 PM (GMT -7)   
I'm not up to date on RMAT, but in previous years when this has been discussed on this forum there has been a severe lack of doctors to apply this protocol. It seems to have been experimental only; a study in Australia, well publicised, and a much lower key one in the US. If I remember correctly, there was a problem with potential side-effects with one of the antibiotics, so the mix was changed, but other than that I can't give you more specific information, I'm afraid.
For what it is worth, this is the sort of therapy that I am waiting for a trial of to begin in the UK, at which point I will move house, heaven or earth in order to qualify !
If you go onto YouTube and search for "MAP", you will find some interesting epidimiology/microbiology.

Regular Member

Date Joined Dec 2009
Total Posts : 93
   Posted 1/1/2010 12:49 AM (GMT -7)   
My daughter started the anti-MAP treatment Dec. 19th. The first 6 - 8 weeks are difficult with flu-like symptoms so she is not feeling great right now. I have talked with several people who have successfully used this treatment and they had the same initial reaction. At week 6 - 8, she will hopefully start to feel better.

My daughter has tried almost every regularly prescribed drug for Crohn's including Humira and Cimzia. The one that helped her the most was Xifaxan and since it was also an antibiotic, we were hopeful that the 3 antibiotics together might work.

If you are interested, I encourage you to contact Dr. William Chamberlin in El Paso, TX. We traveled over 1600 miles to him and we found him the most caring GI doctor we have ever met. My daughter's local primary care doctor is conducting blood tests for him and we have his email (which he usually answers in about 2 hours) and cell phone number. There are many others that are traveling long distances to see him also. I have to say that we were lucky to get a call back from a nurse from previous GI doctors in two days and then we would go through a series of Q & A's in which she would have to contact him through email. Otherwise, we were told to go to the ER. Every time we tried a new GI, it was worse!

I know a lot of people do not believe in this anti-MAP treatment but the more I researched it, the more I understood that this treatment comes in many forms which include many different antibiotics, different strengths, and for different lengths of time which can alter the clinical trial results. The detection for MAP is a more complicated process than once thought. And MAP is now found in water supply pipes and is not killed by water filtration. You don't have to drink only milk as once thought to be subjected to MAP. MAP may not be the problem with all Crohn's patients but it appears to be the problem with many. We decided it was worth a try because Crohn's has really been ruining by daughters life and the previous doctors that have seen her have been unable to help her. And I don't feel this treatment can possibly be as scary as some of the other ones she has taken.

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 1/1/2010 1:27 AM (GMT -7)   
That is a fantastic and informative post, Mastersmom. Thank you.

Welcome to the forums!

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined Jul 2009
Total Posts : 103
   Posted 1/1/2010 4:57 AM (GMT -7)   
thanks for the info mastersmom ... I'm currently thinking about RMAT therapy since I do not want to go on remicade... I've sent some literature about it to my GI and he seems interested... we will talk about it next week :)

Regular Member

Date Joined Dec 2009
Total Posts : 93
   Posted 1/1/2010 9:59 AM (GMT -7)   
If you can get your local GI to work with you, it makes it much easier. I have read where Dr. Chamberlin has worked with local doctors. It was slightly scary to travel that distance to a place we were not familiar with to get help but we felt, after much investigation, that it was worth it. Our local doctor scoffed at the idea saying it was not FDA approved and citing SOME trial results. As I have said, there are so many variables involved in these trials. Some people also may not have MAP or may have a resistance to antibiotics from previous use. Sometimes it seems doctors are afraid it WILL work or they just have not researched it. Each antibiotic is approved, just not the combination for Crohn's. It's a long process to get approval and appears to be political. We don't have the time to wait. This has obviously worked for some and we will find out if it works for us.

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 1/3/2010 3:17 PM (GMT -7)   
mastersmom, great post, thanks! I find the combination of antibiotics a tad scarey, so am glad you are conducting blood tests.
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 

Regular Member

Date Joined Dec 2008
Total Posts : 61
   Posted 1/3/2010 6:15 PM (GMT -7)   
Echoing the others, great post mastersmom.
I had been on Rifabutin, Clarithromycin and Clofazimine for 3 years and 10 months up until this past fall when i stopped during a mild flare (with approximately a year at the start on Ethambutol as well). As mastersmoms indicated, the trials are difficult to interpret - draw conclusions from, and this is owing to a number of factors. Because response can be very individual (does one have CD or IC or UC; if CD, is their CD caused by MAP; if caused by MAP, do they have a strain that is resistant to the ABX; if their strain is susceptible, how long is treatment necessary?) These are all individual variables that could confound a person's experience with RMAT. Testing for MAP is still not 100%, so it is advisable to try the therapy and see if you respond, rather than relying solely on a blood test or biopsy.
I experienced the common but benign side effects at the start: metallic taste, transient mild joint pains. Long term, no side effects noticed. Although i did have photosensitivity when on the ABXs. In weighing the side effect profiles of the ABXs vs biologics and immune suppressants, the balance seems very much in favour of the ABXs. Even response and remission figures are better with the ABXs.
They weren't however the magic bullet for me, but they have been for some. My lack of 'cure' could be owing to a number of factors. One being i may actually only have UC, and not even CD, although i have had a perianal fistula and inflammation in the ileum, which could be considered determinative of CD, plus a capsule that showed small intestine ulcers, but these could all be possible with UC.

If you have tried all other conventional therapies (or are afraid of their side effects) and are facing surgery or just miserableness, and you can get a doctor to prescribe and have insurance or the money to pay for them, they are a very much worth a try. for more information. You can see at that channel an interview with Dr. Borody
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