Yeah DocGonzo, he is a GREAT.
EMom, yeah that is me conducting the interview. I have Crohn's, diagnosed when I was fifteen after a year of having a perianal fistula for a year - unbelievable medical treatment, the doctor that was monitoring me should have had their license revoked - all you have to do is google perianal fistula and IBD will come up. Time and time again my mom would ask her if I could have IBD and she would say no, and this is even after operating on the fistula. But I digress. I will have been following Dr. Borody's protocol for three years this coming February. I had tested positive for MAP on serum PCR and serum ELISA before starting treatment. I have experienced no side effects except the initial ones at the start and now the brownish-redish tan of the skin. Unfortunately, however, it has not been the magic bullet for me. There are a couple potential explanations: one, I might have a co-Colitis (I went to Dr. Borody this summer to have a fecal transplant because of the idea that I might have UC as well but did not go through with the fecal transplant then because I was in remission and did not want to stop the anti-MAP to do the fecal transplant); two, a resistant strain of MAP may have developed (we need MAP specific antibiotics); three, my genetics that predisposed me to a MAP infection and immune response in the first place maybe making it difficult to eradicate the MAP infection; or four, I may not have the type of Crohn's that will respond really well to anti-MAP, something I ask him about
in the interview -"Do we know yet which types of crohn's (ileal, crohn's-colitis, granulomatous, left-sided etc.?" - will respond to anti-MAP, to which he responded that at this point it is too early to tell for sure. Since on the treatment I have had two small flares during the past two falls. I can only speculate as to why the flares occurred: one, because of the reasons just listed above; two, because of stress (LSAT and school); three, stopped Pentasa both times in August because of my Creatinine clearance being elevated (and Pentasa has been shown by Dr. Greenstein in NY and Collins in Wisconsin to be anti-MAP); or four, because of diet going way overboard on sugar - likely a combination of all of the above. That said, despite the small flares in which my blood work has remained normal but bowel has had bleeding (although nothing like a severe flare), the anti-MAP treatment has been the best for me so far.
As a practical way to approach the question of whether or not someone should try anti-MAP or you have your son try it, go through all the conventional therapies up until the point that you do not feel comfortable with given the side effects like lymphoma and brain eating viruses, and if they ever start talking about
surgery, try the anti-MAP then. I am sure others who have had perfect success on the treatment would say just try it right now and don't wait, and they may be right but this is just my practical personal advice. Practical because it will be a challenge to find a doctor who will prescribe the treatment. Although I had tested positive for MAP on blood tests, if you test negative that should not necessarily be a reason not to do the anti-MAP because right now we don't have perfect tests so there are likely many false negatives; it is just that a positive test is a nice thing to have when trying to convince your doctor to prescribe; gives them something to hang their hat on when prescribing off-label.
When the Myoconda trial is done in Europe they will start in the US and Canada. They already have permission in the US by the FDA to run the trial, but it was just too prohibitively expensive at this point to start in the US, so Europe was first.
Post Edited (chocolate_stains) : 1/24/2011 10:21:06 AM (GMT-7)