dang. can this really be possible? now i am seriously thinking about it
thank you
i still cannot watch the videos of dr. enlander patients...wonder whats going on. is there some way for a person to save them and send them to me? or maybe just the audio part?
Daffodil,
As you may know from reading my posts in this thread, for some time now I've been harping on the c4a as a predictor for lack of success (not necessarily predictor of success) with gcmaf. I know Sushi says that it goes up inevitably with maf (which is true because it activates inflammation) and that what's important is whether you feel specific signs of increased inflammation.
In response to that, here are a few thoughts:
1) the baseline number and the amount of increase are both critical. I think once you get into double-digit range, gcmaf is unlikely to help significantly. I would like to hear of any patient that has had their c4a go above 10,000 (either at baseline or during gcmaf) and still improve from it. I would love to be proven wrong on this point.
2) Not all patients can identify "signs" of inflammation, because inflammation is not always a narrow spectrum for ME/CFS patients whom are overreactive
at baseline. For many of us, when c4a goes up, it just means all of our symptoms get worse because overreactivity may very well be causing many of our most prominent symptoms (think back to the Rituximab and ampligen studies, two very potent antiinflammatories)
As for you Daffodil, you seem like you belong in this cohort with inflammation as the most prominent presentation of illness. I don't want to shoot down your hopes, but based on the symptoms I've read about you, frankly I would be shocked if your c4a weren't sky high. If they're not sky high on the tenofovir and you have to come off it to start the gcmaf, then it'll in all likelihood shoot up again, possibly above what it did before.
I believe that the reason why most patients are not responding as well to gcmaf as some is because of our excessive inflammation at baseline. You mentioned ARVs plus gcmaf; I think whatever treatment lowers inflammation, whether as a bandaid or by addressing the cause of it, needs to be supplemented to the gcmaf for it to have any chance of delivering for most of us.
Additionally I've thought for quite some time now that despite David Noakes' reputation, his is the only independently validated gcmaf on the market and thus I wouldn't mess around with the others (at this time). The fact that CindyWillis is responding with less side effects to it further reinforces my view that if you're going to take gcmaf, please take the one that we all know is the real deal.
Best,
Joey
