I am hoping somebody here might be able to help me with a little problem. I was diagnosed with MS a few months ago (MRI, bands in CSF), although I have apparently had misdiagnosed MS for a long time with my first likely attack in 1982 at age 22. Over the years starting in about 1996 I have noticed that Erythromycin seems to help the neurological problems left over by a bout of transverse myelitis (severe MS Attack?) in 1992. Unfortunately, I haven't been able to convince anyone in the medical community to help me follow through with a prolonged course of antibiotics. The walking problems, spasms, memory problems and all the other fun stuff have become bad enough that, a couple of years ago, I decided to keep shopping doctors till I found the answer, which is "Ideopathic Transverse Myelitis with subsequent MS". During the process, a urologist tried a round of Bactrim, then Flagyl, then Erythromycin to see if some of my problems might be bacterial. 10 days of Flagyl eliminated the leg jerks and improved balance and walking although the problems returned soon after stopping. Erythromycin helped as well, although not as much. Oddly, Bactrim when combined with a large dose of Ibuprofen makes a Huge difference until the Ibuprofen wears off, although neither one has any effect individually. Combining Bactrim+Ibuprofen, I was able to fly across the country without using the restroom or twitching and jerking, which felt very abnormal and out of the ordinary at the time. Bactrim + Naproxen has no effect, so it won't work overnight.
I was prescribed BetaSeron by my neurologist, but I am not particularly interested in managed decrepitude with side effects when there might be a better alternative. Given the slow, steady progression of my affliction, a trial of antibiotics would carry a fairly low risk when compared with the possible benefits. The problem is that that the doctors I have seen don't seem particularly inclined to consider my reports of improvement with antibiotics. Also, there seems to be very little research lately into antibiotic use with MS, although there seemed to be a fair amount of interest starting about 10 years ago. The research I have found on the subject doesn't seem particularly rigorous, although that seems to be true for MS studies in general.
People react like I am asking about Leatril or some other hoax treatment when I try to discuss it. Even Vanderbilt Clinic won't directly admit to research in this area, and the only reference I can find online from them is a brief statement on the "compassionate use of antibiotics in the treatment of MS". This brings me to my question for this forum, Is anybody still researching this subject, and is anybody still using antibiotics for treatment? Has this research reached a dead end? I am hoping somebody on this site knows something that will help me dig into the research on this subject.
Thanks in advance, George.