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Discussion Starter · #1 ·
Hi folks!
New idea. Thought I'd just got out trawling the site to see whether anyone has gotten any help for their M.E./CFS using chelation. Anything to report?Also, have been writing at length under the "epstein-barr" category but I know the history of how that termed got dropped circa 1987/88, so (d'uouh) it suddenly dawned on me that most of my efforts may be shielded from people who could really give me answers, or glean anything from what I've said.I didn't used to be this slow a learner. Sorry. As you probably know, M.E. can really trash the old brainpan. Go to the "epstein-barr" discussion started by "stillhere" if you want to see what I've said (without, I hope, too much excess). Basically, I discuss all kinds of treatments I've had without much positive to report thus far. Hoping we can stop one another from reinventing the wheel by comparing notes.Chelation is newish to me. Had never really been proposed as a treatment. Then I ran across something on the net. Initially very excited, then, with more looking, getting kind of iffy. I've been through so many arduous treatments and plans, have gotten back up on my horse so many times, that I'm now horseshy. But somebody is claiming that this really really works (oh, really? you say) and there's always that urge to try something, almost anything, and the next thing.So eventually I probably will, but want to go about it in the best way possible. Especially important because apparently if carried out in the wrong way chelation can cause various kinds of irreversible physical damage. So, per usual, and I think this only makes sense, I'm trying to rush up to the leading edge, bleeding edge of it all quick as possible. And to compare notes to avoid more useless efforts--which have a natural downside.Kind thanks for any help.Get well soon.Key-lated to meet ya,jigoe88
 

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Hiya
Can't say I have ever tried or heard of Chelaton.One book I would highly recommend that discusses all the current treatments etc out there for ME is by a prominient ME/CFS doctor here in the UK called Sarah Myhill, its useful because it helps dispels myths and treatments that she thinks are a waste of time. I have a quite older version before she got published properly but if you go to her website you can get one from there:http://www.drmyhill.co.uk/article.cfm?id=362I definitely know she isnt aload of old hocum because she helped a very close friend of mine over her ME/CFS. Its worth a shot to check it out, after all as I see it you have nothing to lose and I know this particular doctor is only interested in helping ME/CFS patients not out there to fleece them.Hope this helps, Clair xx
 

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hi Clair,I had a look at that site and she does mention chelation. However I would not think that the hcelation methods she mentions are inaccurate. Also she lists possible chelators - hyaluronic acid, chlorella, sulphur, garlic and MSM, chitin, ciantro. None of these are chelators. I don't actually know what hyaluronic acid is - but I've never seen it mentioned on the chelation lists I post on and if it was one it would be mentioned there !
 

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Hmm not sure, but I do know she is a reputable doctor who specialises in ME/CFS.Don't ask me I haven't a clue what Chelation is
my brain hasn't been what it was for sometime due to the good old brain fog!I just stick to the advice my endocrinologist gives me 'have more bananas'
 

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Clair,I did not mean to criticse your doctor - I'm sure she is very good. But her posted info on chelation is not accurate. This is not surprising as nearly all doctors who talk about chelation for mercury are ignorant of the basics of mercury transport.If they read and understand this paper - and figured out the treatment implications then we would be getting somewhere. There is a big gulf been what the lab guys know and what the docs know:http://www.sciencedirect.com/science?_ob=A...1691db33705be72
 

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Stillhere, no problem
she isn't my doctor anyway...but a friend of mine went to her and swears by her.I prefer my endocrinologist he's as mad as a hatter and he answers everything with 'bananas' but he makes me laugh and at least he listens which is more than some do. I doubt he knows about chelation either but next time I swing past his office I will ask him on the subject.I agree on the lab/doctor thing...never a truer word spoken.
 

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Discussion Starter · #7 ·
Hi people.Just got out of 17-hour sleep so excuse me if I'm not with it completely And realized that I'd had activated "notification" for the discussion group I started! File under "joys of ME."Against the odds, this discussion is getting nice and lively. But it's what I keep running in to on the chelation issue--reasonable people are disagreeing.Yesterday, I got an email from my potential chelation doctor who said that Solley is totally wrong about any inherent danger in chelation, while of course Solley says it can be harmful in some terrible ways, such as permanent kidney damage.I could go mad put I'm past mad. There's a new kind of sanity on the other side of mad.The distressing thing is that I feel I could read everything out there--in books, on net, personal accounts--and still not feel that internal "click" of a definitive answer.But I also feel that if we keep tossing things into the ring that the issue will sort itself out.Either it works or it doesn't.In the meantime, thanks for the posts and keep them coming.By the way, part of my answer to the doctor is that if Solley is right then other treatments, such as vitamin C by IV chelation can't work when metal toxicity is still present. I've had vitimin C by IV and it made no change in my condition. Doesn't mean Solley is right but I think we have to put a point in his column for this. (Not a "nil-nil" game.) My dread would be to go through the entire Solley regimen, another really grueling one by the looks of it, only to find it also has produced no change, and does not make any difference in other treatments that have failed me in the past (like vitamin C by IV and more grueling ones.)Bleary but determined,gijoe88
 

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Discussion Starter · #8 ·
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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Discussion Starter · #9 ·
P.S.To do or not to do? What was the question?Small blip here. Dr. Hokama's first name has embedded in it a crude word for something all of us with IBS have had trouble with. The overzealous program bleeped it. Seems silly when the word was imbedded, and if the doctor ever reads this let him understand that I'm not the one who edited his name so crudely!Yes, what's in a name, but sometimes it's possible to read too much into it. Blame it on the ciguatoxins, whatever they are exactly.
 

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Discussion Starter · #10 ·
Was looking at the abstract of the Bridges and Zalups paper on metal toxicity. What I don't see addressed is: aside from known unusual exposure to some toxin, such as an on-the-job incident, why are WE more prone to be made ill by the excess metals in the environment than others? And where can you find something idependent on anyone who's really gotten actual positive results from a course of chelation? (Independent testimoninials.) I'm at the point where I'm not convinced enough to want to do chelation--right now anyway--but still having trouble letting it go. Anyone got ideas?Best,gijoe88
 
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