Discussion in 'Fibromyalgia Main Forum' started by joanierav, Dec 26, 2012.
sorry , i find it very hard to navigate the phoenix rising site to find out.
GcMAF is something your body normally makes. MAF stands for macrophage activating factor.
A researcher discovered that some serious diseases like cancer, HIV, and CFS have the ability to reduce the amount of MAF in a person's body, and he wondered what would happen if he gave these people more MAF.
It looks like the illness has the ability to suppress this part of the immune system. Macrophages are like little Pac Men that gobble up bad guys.
Two things made me decide to try it: it is a natural substance we already have in us, and there is no minimum dose. You can take as small a dose as you want.
It seems to be working really well for a small percentage of sick people. There is another group of people with CFS who are finding that it causes massive inflammation as a side effect, and we have to be really careful with it, even though it does still help us feel better.
Then there is another group of people who feel nothing from it, and an even smaller group who found it only did bad things to them.
I hope that helps. There are much better explanations out there on the web if you search for it.
thank you so much for your response. im always so appreciative whenever i get a reply, for i know how sick we all are and what an effort it takes to respond.
your explanation was very easy to understand, and i thank you for that. but you said the one keyword that scared me "inflammation". im sure i suffer big time from that already, and what causes my "bad days". so i will wait on the gcmaf. im really scared to try new things. i mentioned it to my endo and she was aghast, i was surprised she even knew what it was. her reply was "try this rheumatologist" as she handed me yet another rheumys name. im finished with rheumys , they have never helped me. my problems are more from the cfs fatigue rather than the fibro pain. but i am feeling a bit better since she changed my synthroid to the tirosint. as i am very lactose intolerant , and synthroid is made with lactose base. (i mentioned this on another thread)
how are you feeling fore? i think you said you were a bit better lately too. praise god.
so nice talking to you, and thanks again.
love , joanie
Hi again Joanie,
Yeah, inflammation is scary to me, too.
I'm very sensitive to mold toxins, and they do damage by causing inflammation.
And it seems like most of our CFS/ME symptoms are caused by inflammation, so when a person takes too much GcMAF, she basically feels like her CFS is worse.
That's why a lot of people with CFS who try the GcMAF are starting with a super tiny dose and gradually increasing it as they feel it's okay to do so. If they start to feel bad they cut back or stop for a while.
Since it's experimental, you have to take responsibility for not hurting yourself with it.
Since it does heal some people with CFS, it would seem to imply that the macrophages are killing something inside those people. So we run into the same old problem of: How do you stimulate the immune system without causing inflammation? How do you kill bad guys without causing inflammation??
I'm hanging in there! I hope you are, too.
I'm glad your thyroid medicine is better!
The company that makes Armour thyroid, which I take, switched the base from lactose to cellulose and now it tastes really blah. But I guess more people can take it now!
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