Mycobacterium avium subspecies paratubercculosis (MAP) - new member

Hi,
Our son who is 11 years old had a right ischiorctal abcess which was opened and drained in November 2012. In December 2012 he developed mouth ulcers and face swelling. He was diagnosed with Crohns Disease in January 2013. He has it in the mouth, small bowel, colan and perianal, fissures and fistula's. He recently finished a 8 week liquid diet which cleared up his mouth ulcers and face swelling. When he started back on food we have had 3 times where the mouth ulcers have come back for a few days. Last month they discovered he had 3 more pockets (abscess) and 3 weeks ago had 2 cetons put in. He is currently on Imuran 50mg.

We visited a new doctor today, who believes that a major cause of crohns is the MAP theory. He wants us to take our son off the medication he is on and start on a different path. Which is - Anti map drugs ( a combination of certain antibiotics), Remicade and a number of sessions in a hyper-baric chamber. He also said the cetons would also be removed.

Our question is - Is there any one out there who knows anything or as gone through this treatment. Any info would be appreciated.


We live in Sydney Australia.

Thanks Nett.

No that is not our doctor, but we did see him today. Do you have an opinion? good or bad.

We would really like to hear your thoughts on this treatment.

Have they tested him for MAP? They have not proven, as far as I know, that MAP is a cause for crohns only that a high percentage of patient biopsies found it. Also, the anti-biotic treatment studies that I have come across have not shown promising results as far as maintaining remission. MAP is more likely a secondary infection and not directly related to crohns or symptoms. What have you found as far as diet? You said a liquid diet helped relieve his mouth sores, what type of liquid diet was he on? Probably the success there was related to the elimination of foods he is intolerant to? There are genetic factors involved that make us more vulnerable, but there are environmental issues that trigger it, medications, foods etc. Many people have success with diets such as SCD, paleo, Gaps etc. Some have great success with only eliminating Dairy and Gluten. A high percentage (60-80%) have an intolerance to yeast. PubMed is a great place to find the studies that have been done on Crohns disease, I have read some on there about the success of elemental diets on pediatric crohns disease, I have not specifically looked into pediatric crohns because I am too old but I know there are quite a few on there, I skip to the end of the study or read the abstract to see if it looks promising, if it does then I will read through the body of the study. For myself personally I had an IgG food panel of 154 foods done, after eliminating the foods that I tested positive for my symptoms are gone until I challenge a food, only a couple (I have only seen two) of studies on the IgG to foods and elimination diets have been done and both were small but promising.
I am not saying your Dr is wrong, but I would definitely look into the food issues as well. I don't know if IgG testing is done in Australia, I know it isn't easy to find here, only holistic or integrative Dr's will do it in my area, but You should definitely try SCD or Gaps and see if anything helps, they are highly restrictive and take a bit to get used to but definatly worth a shot. But they will not work 100% if you don't eliminate his trigger foods. And since he is so sick I would suspect foods he consumes daily or in large amounts like yeast, gluten or dairy.

Post Edited (skofbengsk) : 4/11/2013 2:14:13 PM (GMT-6)

Has he been tested for yersinia( non plague varieties)?

Whether MAP is the cause of Crohn's or not, triple antibiotic therapy has little value in treatment. After TWO YEARS on an antibiotic cocktail specifically designed to combat MAP, the control group was faring considerably better than the group taking the drugs. From:

https://www.ncbi.nlm.nih.gov/pubmed/17570206

PubMED said...

RESULTS:

At week 16, there were significantly more subjects in remission in the antibiotic arm (66%) than the placebo arm (50%; P=.02). Of 122 subjects entering the maintenance phase, 39% taking antibiotics experienced at least 1 relapse between weeks 16 and 52, compared with 56% taking placebo (P=.054). At week 104, the figures were 26% and 43%, respectively (P=.14). During the following year, 59% of the antibiotic group and 50% of the placebo group relapsed (P=.54).

CONCLUSIONS:

Using combination antibiotic therapy with clarithromycin, rifabutin, and clofazimine for up to 2 years, we did not find evidence of a sustained benefit. This finding does not support a significant role for Mycobacterium avium subspecies paratuberculosis in the pathogenesis of Crohn's disease in the majority of patients. Short-term improvement was seen when this combination was added to corticosteroids, most likely because of nonspecific antibacterial effects.

Emphasis mine.

This has not stopped the MAP = Crohn's crowd from pushing these drugs on patients despite the serious side-effects caused not only by long-term consumption of antibiotics, but from little things like how clofazimine leaves crystals in your organs, and (for 75-100% of patients) turns your skin pink to brown- and it may last for years.

Even if these antibiotics were to treat MAP, what of it? You'd need to be on these drugs the rest of your life if, as the MAP crowd claims, MAP is pervasive- found in milk products, found in the drinking water, and so forth. You'd run the risk of re-infection, even if you were to somehow clear MAP from your body.

The entire MAP=Crohn's hypothesis doesn't jibe with the data. While for TNF drugs the most absolute contraindication is infection, Crohnies get better on TNF drugs. If MAP is caused by an infection, you'd expect to see people get worse on Humira and Remicade, not better. Ditto with immunosuppression drugs that are routinely prescribed for Crohn's. And the MAP crowd explains this away with special pleading, but what they cannot answer is why enteral and total parenteral nutrition succeeds in managing Crohn's. If MAP causes Crohn's, why does the luminal contents of the intestine even matter? MAP is a facultative intracellular pathogen, and cares not whether one consumes a cheeseburger or a salad or a can of Modulen IBD- but a portion of Crohnies do substantially better on enteral (canned) diets, with a similar proportion doing better on total parenteral nutrition.

Be wary of doctors foisting high-dose exotic anti-mycobacterial drugs upon you. The published data in the peer-reviewed, refereed literature does not support their use. If they offer anecdotes ("Well, we have one patient who has been in remission for _X_ years on these drugs"), back away slowly and leave as they are offering nothing but rumors and false hope while using you as a guinea pig at your expense.

The OP is not present on the forum for more than a year, so don't know how it went.

But its interesting that the doc brought up HBOT. Anyone else tried HBOT, and helped?

Does anyone here know of any kids currently on vedo?

irishgal1 said...
Hi All,

I just came across this older thread and have had huge success with AntiMAP. I tried everything and after two decades, I failed it all. I have been on AntiMAP for 13 months now and feel like I've never had Crohn's. A true miracle. The Selby study mentioned above was severely flawed. Dosages were too low, capsules didn't burst and the data was misanalyzed to show no effect. In any case, although AntiMAP doesn't work for all, it does for about 50-70%. Prof. Borody in Sydney is an excellent doc, and adept at treating children. His remission rates are the best in the world. Those who live there are fortunate!

There has been a lot of new info about AMAT and the mycobacterial link to Crohn's lately, and there is more to come in 2016. It has all been compiled at TheCrohnsInfection.org. There are patient stories, along with blogs and videos directly from the researchers.

CDwarrior12, if you are still looking for a doc in NY, I can help you. I pray your child is well. I can't even imagine how difficult that would be. Peace, light and health to you all.

Very impressed with your results... not trying to challenge you or anything..
But i am one of those guys against antibiotics for crohns..uc...
Just wwondering from your thoughts etc. There are so many changes we dont see when taking antibiotics auch as shifts in microbiome so on so forth.
How confident are you that you might not be in a bigger flare at the end of map treatment?
Also, do you exprience major side effects from the antibiotics you re taking now?

Thanks for coming back and posting masterdom. Many do not. Always nice to hear updates from those having great success.

Must have been amazing to see the change in your daughter.

Thanks again.