Most of Sarah's lesions actually vanished on her last MRI.
I wish that were true! Well, shrunk not vanished, although a few around the edge did vanish and I have absolutely no new activity since starting somewhat over two years ago.
Let's go through your questions one by one:
What are the dangers of longterm antibiotic use?
The antibiotics recommended by my husband, David Wheldon and the main ones by Charles Stratton of Vanderbilt are as safe as any and ideal for long term use. INH, which I have never taken, needs closer monitoring and rifampicin can't be used for intermittent therapy.
If there is no herxheimer reaction in a certain amount of time on the abx, should one discontinue use?
No "herxheimer reaction" is nothing to worry about, either if you mean a true herxheimer reaction or the violent aches and pains which some people report.. When I first started I felt as though I was coming down with the 'flu for a week or so, then after the fifth pulse* of flagyl I had some violent pains in my right arm for a couple of weeks, but that was due to the fact that my arm had been virtually paralysed before starting treatment. Someone not so afflicted could well not feel anything much.
*I used to think it was the third pulse, but talking to someone who started in early August, at virtually the same time, two years on, I realised that it must have been at least the fifth time because it wasn't until February of the following year.
May conventional therapy (avonex) be continued safely?
As you have already discovered from Rica, avonex may be used at the same time.
If there are no major risks with this regime, why isn't everybody trying it?
I wonder this myself. Most neurologists, including my own, completely scoff at the idea. Certainly many people don't like the idea of using long-term antibiotics, but if they had TB they would have no choice. If you take adequate probiotics along with the treatment, you get no gut problems. I didn't. But now I have got my life back, which personally I find preferable to a life of severe disability.
Have you read this:
It is being constantly updated and is a mine of useful information. If you would like to write to David, you would be most welcome. His hospital address is to the bottom of the first page.