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.
www.youtube.com/ibdvideos for more information. You can see at that channel an interview with Dr. Borody