Sharon, yes, I understand that many people don't want to change what seems at present to be working for them, and also that some people don't want to take any drugs at all, not even something that you take for maybe a couple of years and then don't need any more. Also I know there are quite a few people who have managed to find a PCP to prescribe either David's regime or Vanderbilt's, depending on where they live, and then there and then there are people like you. No, what I found disappointing was the fact that I got so many requests, either by email or private message, about people who would be willing to treat in the US, then when I find someone, nothing, apart from two people who I know have or will be seeing him. You know, its always worth trying your neuro because a few are willing to try it. Most aren't but you never know until you try. Good luck!
Phil, I recognize your name from somewhere!
The benefit of seeing Dr. Powell is merely for people in the US who are understandably reluctant to reluctant to go it alone or who can't persuade there PCP to treat them. The regime is basically the same and has the same end result, but uses slightly different antibiotics because, say, roxithromycin is completely unobtainable there unless ordered offshore. Stratton, for instance would love to be able to use it, but he just isn't allowed to. I am very lucky being married to the person who is treating me and I am very glad that you find the information helpful. Several people are seeing him from this country who post on thisisms, as you can see, and one person even wanted to come over from the US, but we came across Dr. Powell, who would be able to prescribe what would be acceptable there, as well as monitor the patient. That is all.
HappyDaddy, yes I am mixing two questions, but they are both relevant and I think not confusing. The main reason I didn't mention NMSS trials is because I am based in England and besides, there is a big thread going on in the General Discussion section about the NMSS and trials. Trials take years to complete, David and Dr. Powell are treating people now. C Pn is difficult to find even using the best available current methods, which is why they both often treat empirically. Many people don't want to wait for trials to be completed, especially when they often, like me, won't show diagnostic titres. They would rather just get on with the treatment and stop the disease in its tracks, rather than wait for more damage to be done, whilst awaiting the results of any trials.