Good news/bad news dept.You asked, Clair, to keep you posted on the chelation thing. (By the way, chelation, in the way of general definition, is just using a medicinal agent--taken by IV or orally--to trap suspected toxins and get them out of the body.)This afternoon I had a long talk with Gail Kansky, who founded and runs The National CFIDS Foundation (
http://www.NCF-NET.org). She knows more than just about anyone I've met on the whole topic of ME, lots of the inside stuff as well as the tougher technical stuff, and she wasn't especially excited at the prospects for having a good outcome on a chelation regimen. She wasn't willing to dismiss the idea outright, and she isn't familiar with the Solley program in particular, but her general take is that it doesn't sound like a plausible cure, although you never know.What she is excited about is work being done by Dr. Yo****sugi Hokama at the University of Hawaii. He's working on something, hold on to your horses, called "ciguatoxins" or "ciguatera epitopes." I don't know from ciguatoxins, but these seem to be more bad animals that disrupt the immune system. Apparently the blood sera of ME patients tests off the charts for them. She expects Dr. Hokama's work to be done in about six months. When it is, if the ciguatoxins are determined to be the main thing making us sick, there are apparently several avenues to be sought out as a way of knocking them down. This would not be a "cure" exactly, but would make us feel a lot better and probably able to get a reasonable part of our lives back. Because this is standard medicine, it goes a little slowly yet has a chance to be more solid. One positive sign in that direction is that some of the big pharmaceutical companies have come around wanting to get involved. I know they don't have the best reputations, but they usually don't invest in dry wells either. Their experts must see something to this.I'm still on the fence. Waiting for the "ciguatera" (whatever that is exactly) thing to be resolved--while it's less than ideal--might be more grown up. But the possibility that chelation could be an actual CURE still tugs at me. If a virus is the root cause (and Gail and I both agreed that our instinct is that it is), would getting rid of toxins empower the immune system enough to overcome this virus? Thus halting the thing that's causing the immune imbalance and generating the ciguatoxins to begin with? Or is too much to think that a real "cure" could be found by relatively informal or marginal means? (Stranger things have happened.) Yet if metal toxins are in the air, food, and water, why are we the only ones with ME here? It could still be true, but the reality is I'm more iffy.So right now the balance is leaning toward NOT going ahead with any chelation program. I seem to keep getting ixnay signals: caution lights, or even stop lights. I intend to continue to research this area, but all of us with ME have limited resources, so if I reach a certain point where returns seem to be too diminishing, I think at this point I'll have to stop.I feel uneasy about bypassing a potentially effective treatment, but I'm loathe to engage in another long arduous regimen that finally doesn't help and leaves me hurting and dejected yet again, requiring a long recovery cycle.Something in my dizzy brain says just do it, the part of me in a hurry to recover and wanted to jump into anything with any promise, but deeper down my instincts say hold off. And I'd really be kicking myself if I put heart and soul into an ineffective program, especially given that I've run across so many little signs and signals that it's probably not such a good idea. But who can I speak to who would know for sure? Sorry if I'm disappointing anyone, but this is where things stand, or is it wobble, with me right now.Hurting and in Hamlet mode,all the best,gijoe88
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