One Year on Abx

[coach]

I started the CAP one year and 3 months ago. I started with azithromycin, then added doxy, then started the flagyl. I have done 10 flagyl pulses up to date. I really have not noticed much improvement so far. My MS still seems to be progresssing. I do seem to have more pronounced balance issues than at this time last year. Still dealing with the neuropathic pain in my legs. Still do want to give the abx a fair shake. Wondering about adding Rifampin to the mix. Still hoping to turn a corner down the road somewhere. Just had an appointment with my neuro who asked me why I was taking the abx so I told him. His comment was that he thought there was more danger in taking the abx than being on one of the CRABs and that if he had MS, he would be on one of them. Just can't make myself do that and besides, if one is SPMS, would they be of any help? His argument was that when does MS become SPMS and that it's still the same disease process, so he felt they would be helpful whether RR or SP.

[SarahLonglands]

Coach, you might care to add rifampicin: I took it for six months before going onto intermittent. Stratton is away at the moment if you want to contact him. What you do need to remember about rifampicin is that once you start you have to stick with it for few months because it can't just b stopped and restarted t will.

On another note, endotoxins can make your balance worse for a while, so it isn't necessarily case of the MS getting worse.

In this country, taking crabs when you have become progressive is generally thought a waste of time. I don't know whether it really is or not. They are supposed to work best by cutting back on the number of relapses, so if you don't get relapses or very seldom but progress between times, how are you supposed to know?

Sarah