I just came across this poll for rating the treatment with GcMAF.
I got all excited and then disappointed to see that only three people actually responded.
I know that there are many more on this protocol. I get that it's hard to quantify how you are feeling because it keeps changing and you probably don't want to mislead people.
For people like me, who are contemplating starting on it, it would be a tremendous help to see how others have fared on it.
Whether positive or negative, it would be great to know.
I know that in the beginning it's hard to tell but, by now I know that quite a few have been on it for 4-5 months. By now, you should have some idea.
Is the problem that your doctor keeps adding other things to your protocol so it's hard to tell what's affecting your status?
Hi Nielk,
I probably didn't do the poll either because the answers are not subtle enough and to really answer it you would probably have to have completed treatment with GcMAF.
And yes, the reason you are not seeing clearer reports on "how we are doing" is that a lot of it is under the surface and can't be gauged by our ever-fluctuating symptoms. I don't think you will find that you just feel progressively better as the weeks on GcMAF pass.
I have been on GcMAF for 22 weeks (projected time, about 40 weeks) and yes, the addition of other aspects of the protocol a given doctor prescribes for you, can definitely confuse your ability to report on the effect of the GcMAF. And, each week has cyclical symptoms (for many of us) according to the rise and fall of macrophage levels from the GcMAF itself.
I took only GcMAF for the first approx 16 weeks and I was gradually having more and better "good" days with more stamina and fewer "bad" days. Adding in Nexavir and hydrox B12 injections, plus antibiotics and some other meds and supplements, has definitely made me "feel" worse (though I still have increased stamina on good days). I suspect that I am having increased die-off and detox symptoms as the new elements are likely to be also stimulating methylation and killing viral and bacterial infections.
I worked with the simplified methylation protocol for a long time and had many of the same unpleasant symptoms I am having now.
I don't think you can really assess the effect of GcMAF and other elements of whatever protocol you are by evaluating your progress simply on a symptom scale. There is a huge, complex difficult job to be done by GcMAF and the rest of it and some of the symptom-effects are going to be uncomfortable.
If GcMAF is targeting a retrovirus and other problems, this is great, but there is still a lot of normalizing that will have to happen aside from incapacitating a retrovirus doing other things to kill pathogens. Our immune systems are hugely out of whack as is our digestion, methylation and other metabolic functions.
I feel hopeful, as it is clear that GcMAF is doing
something and I have never heard of it doing anything "bad" (except on or two people who had rises in calcium--this needs to be watched) and, (best scenario), I can understand the causes of some of the unpleasant symptoms.
Like everything else associated with ME/CFS, this is complicated. Time will tell.
Best wishes,
Sushi
