I enrolled in Dr. Faustman's trial in 2009 or 2010 while I lived in MA. I'm most likely the member at IPF whose posts you have read. I only joined this site because Manny intends to interview Dr. Faustman and I have a couple of questions for her.
I've since moved back home to CO, and I went back to Boston last Oct. to participate in the trial. I thought I would get the BCG (or a placebo) at that point, but all they did was draw blood - yet again! I'll swear, they have taken a couple of gallons out of my arm.
I don't know what the protocol is for the trial. If it involves multiple shots spaced 4-6 weeks apart, I'm afraid I'm going to have to drop out of the trial. I simply don't have the resources to fly to Boston every month or so. If, on the other hand, it's just 1 or 2 shots with follow-up bloodwork, I'm going to try my darndest to stay in the trial. It seems to me that since the BCG is so readily available, I would be able to take it here and have results sent to them, but that's not the way clinical trials work, I guess. Maybe when they move onto Phase III.....
The first time I met Dr. Faustman, I was blown away. She spent about 45 minutes talking to me - she was training a new assistant, so that may be why she spent so much time with me. I'm still kicking myself in the butt for not taking a tape recorder!
One of the things that's interesting to me is that I don't present with any GAD antibodies. I don't know about islet cell or insulin antibodies, though. When I went back last October, I asked Dr. Faustman's able assistant Nick about that. I'm going to email him and see if they can give me any data. He told me that they are looking for specific markers on the '2A protein', and that I am deficient in that protein. I've done a little research about that, and all I can find out about it is that it is implicated in cancer.
I have another appointment in Oct. of this year (2012), so I will be writing about my experience extensively.