We spoke to Dr S just now. He was approving of my going back on flagyl, and, because of nausea, cutting back on caffeine.
A couple of interesting and heartening bits came of the conversation. One is that I will continue with this protocol for another three months and call him again, sooner if there is news either way - worse or better - because I still react. But... my daily reaction is nowhere near five years and four months ago. For example, today is Azithromycin day - and Doxy, Rifampin. Amoxycillin, flagyl, and caffeine.
Here I sit, fairly sound of mind AND BODY, writing a blog and thinking fairly rationally. Today, I went to the barn and did my everyday stuff, swept the floors, did some (much-needed) cleaning, some laundry, and some other stuff that I could not have come close to even thinking about months or years ago, especially on MWF.
The other thing is to me very exciting, both an encouragement and a warning: caffeine, a short essay.
John (farandwide) and I speak on the phone occasionally. He has, for a number of years, been unwittingly feeding his bugs and making them very happy with caffeine, and has gotten worse and worse. At some point a few months ago Norman Yarvin pointed out this fact and John has cut way back. May he now get better - but it will be on our clock, which runs very, very slowly.
With this bit of knowledge in my mind, about ten days ago I stopped taking my AM supplements with my morning coffee (the same coffee I said I will NEVER give up). I haven't given it up - just moved it to the time AFTER I take my AM abx and caffeine pills (now 1 1/2 pills).
I told Dr S that I thought the use of my right leg, which was only a numb post five years ago, was improving faster than before and I really thought it was the more astute use of caffeine and could this be possible. He replied with an emphatic yes. I will continue to pursue this. Anyway, I can sit in a chair and pick up my leg without touching it, and put it on my left thigh halfway up the thigh. This was not possible even two months ago - I tried it.
So, for all the faint of heart, scared to death, of us - and all of our common and legitimate complaints - keep it up. It is soooo worth it.