I don't think so. I think the study is to look for predictive antibodies to CFS.
I think some have gotten benefit from his oral protocol. I think
SOC is one.
I thought maybe he started using cidofovir because of the Peterson talk that came out last spring.
I don't know anyone else on the cidofovir protocol unfortunately through Lerner.
He is measuring all three viral titers and all of mine are high. They have not improved or changed in the 4 months I've been doing this. Wow I am surprised. What does he say abt that, if u can ask him?
Did you ask him what the rationale for not using cidofovir was? I know he is not the easiest to ask questions of. I am sure you are disappointed. I would be too after all his tests and travel and such. I'd be curious to know too why he would use one protocol over another for seemingly similar cases. I can try to ask but I doubt I would get much of an answer. yes I agree.
Emma thank you so much for your clear response and also the others. You said it without my having to say it, you can't talk to him, question him or else.... Never ever have I encountered a demeanor like his. I did ask and not happily, he tried to answer by saying he only does it for patients who were not successful on the Valtrex/Valcyte protocol, but I knew that was not true, I did not say that to him. OMG he wud have exploded. That's why I "speculate" he now wants good recruits with various virus AB's to use in his study and for the study/grant parameters you can only be on certain oral AV's. I imagine he did not ask you to be in the study since on Cidofovir?
I had asked his nurse on my second visit when I went there for the Holter test and other at the hospital (he was not ther), when he started using the Cid and how many people on it and how they were doing. She said he started in the spring (he had done it w one person several years ago who did not respond to other stuff but then had coverage issues so never used after that/something like that). So now he was able to get it covered and doing again, if you do it the way he is doing it with you (she told me the entire process), and there were anywhere between 10 to 20 on the Cid and off of it. A few people like me flying in (someone frm Texas), no one else frm my area. She said many can't handle it so come off quick, others get no improvement by 3 months so he does not continue and a few are doing well, and go past 3 months, usually to 6 months. I figured you are one of the winners going past 3 months...I hope.
SOC
Thanks for the well wishes! I'm not yet back to where I was but I also keep falling and spraining my ankle!