# Ian Solley treatment for ME/CFS (chelation)



## 17210

Howdy.I previously set up a general discussion group on chelation and ME/CFS, then had the new idea that I might get more hits if I set up something more specific.Right now I'm examining the treatment regimen being proposed by Ian Solley in his e-book, which I stumbled upon while on the web. I'm intriqued by Ian Solley's method because he uses the wonderful word "CURE" in the title of his document.I'm open to hearing about anyone's take on this method and on other ideas about chelation or anything you've found that might actually work, whether as "cure" or "treatment." I'm an ME-long-termer and have been through untold numbers of trials and regimens. Results may vary. More than willing to share anything I know--the good, the bad, even the stuff they used on the "X-Files," all if it.My big idea: let's cut to the chase.We should share notes and try to sort things out, prioritize, list what works, what to try next, and the best way to go about it. Save each other time and hassle. Stop reinventing wheels. Especially square ones. Let's be each others' new coaches. Time to finally send this nasty ME thing back to its room.Are you with me?Extreme best wishes,gijoe88P.S. No one had ever suggested chelation to me before and I thought it might be helpful, especially because I also have heart problems--caused I suspect by that mean ol' ME that generates all those excess cytokines (if you don't know, feel free to ask) and these cytokines, I've now learned, are substances that can be involved in heart failure. Wow, this is one beautiful disease. If you're into aject misery. For me, not so much really.Also, I'm discovering that the field of chelation is a wide one and can sometimes be a bit of a mine field. There are people telling you it must be done only this way, others only that, or else there could be some kind of irreversible damage or other dire consequence. Well, gijoe88 no like this idea too much. Too long in the wasteland already. What are the roots that clutch, what branches grow out of this stoney rubbish? Enquiring minds want to know. I want to know. And, hey, I'll bet you want to know, too.As I said, I'm intriqued by Ian Solley's method because he has used that wonderful word "CURE" in the title. But I don't feel I know nearly enough to evaluate what he's saying. Would especially like "been-there done-that" reactions to any and all chelation rides, wild and tame and otherwise. Unfortunately, if you got cured you might no longer need to be trawling the net on this topic. But please to kindly remember the rest of us and gives us a hands up, eh?I know many times I've gotten sick of reading medical stuff and don't want to hear another word about ME/CFS/IBS/UPS/U-NAME-IT, but then that nagging reality comes calling that you still have to deal with this disease because you KNOW it's going to keep dealing with you, and it sure doesn't play well with others. So I'm asking you to tolerate just a little more CFS blah blah blah, and then the idea is to power up and get our lives back with one big push. Sounds like a plan.To our health, then. Avanti.


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P.S. I meant to say "abject misery" not "aject misery" but ME came along and stole the "b" and most everything else I had, like, oh, a life, a brain, etc. It even scoured most of the paint off my pick-up. Can you relate?


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## 13693

Hi gijoeI don't have much time to reply. I don't know much about chelation for heart conditions - its totally different to chelation for metal poisoning. The cochrane collaboration has done a review on it though:http://www.cochrane.org/cochrane/revabstr/AB002785.htm


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## 17210

Thanks for the info, stillhere.Don't mean to seem ungrateful but I'm hoping it becomes more than just you and me going around and around in this little club.How long has the Solley document been out there? Is it so new (stateside, anyway) that not many people have tried it yet? It's occurring to me that, since IBS is only one offshoot of the big ME problem, perhaps I'd have a better chance with an ME blog. Do you know what the good ones are? (Of all people I should know this, but as I said there are times when I just take a vacation from the medical stuff, and also the heart issues have had my attention lately, even though I strongly suspect a connection.)I see another heart specialist next week. Do you think it would help to bring her chelation info, or is this another DIY deal?Just got the latest issue of "The National Forum" (on CFIDS/ME, FMS, GWI, MCS and Related Illnesses)--Vol 9, No. 2, Fall 2005. Their web address is: http://www.NCF-NET.orgI should ring up Gail there--the editor. She knows more about these issues than just about anyone I've ever encountered. It's just that I'm having trouble following because sometimes it gets to the nano level. For example, I keep forgetting (if I ever really understood) what "ciguatoxin sodium channel antagonists" are. And when I've brought stuff at this level of minute detail to doctors they've tended to just throw up their hands. I'm kind of waiting for the issue where the front cover just says, "CURE DISCOVERED!" But maybe that's too easy. Maybe I have to wade back into the sea of specifics on parsing viral structure, etc. Anyway, hats off to Gail for all her fine work. I wish I had her capacity for parsing the biochemical minutiae.And thanks again to you, stillhere. Adios,gijoe88


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## Clair

Well one word to the wise...this is the CFS/ME and Fibro forum and generally due to the nature of the illness the speed of getting replies on here is a bit slower than you would get from other people...so please be patient







Secondly, I suspect you probably will get much of doctors throwing their hands in the air not knowing what your going on about...because ME/CFS by its nature is still a bit of a mstery to most doctors unless your lucky enough to stumble across a rare ME/CFS specialist. Do you have an ME association in America that can recommend you a doctor? I know we have that here in the UK.Also most of us are just struggling along day to day to get the simple stuff done, so your chances of provoking a stimulating debate and high level conversation from alot of us who have had our brains switched for a ball of cotton wool...well I think your hoping for too much there!







Let us know what you find out about the chelation thing,Clair xx


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## 17210

Hi there again, Clair.Whew, you're the busy one today. Bravo!Perhaps it's a thing in the nature of the Yank but here even we ME long-termers work at it like rabid squirrels. We have groups, books, marches (even if some are "marching" on guernies!), you name it. Haiti has its zombies and the US has us.Probably the best ME book ever written was done up by a woman who contracted ME herself, a professional journalist. How she did it is nothing short of miraculous to me. It's called "Osler's Web: Inside the Labyrinth of Chronic Fatigue Syndrome" (Crown, New York, 1996) by Hillary Johnson. I just looked it up and Amazon-UK has it for only 1.99 (pounds sterling), a real buy. (And when you're logged on to Amazon you can imagine you're taking a mini-vacation in the rain forest.)Then I'm in a group and they publish a magazine that is so technically astute that I can barely make it out, but it's wonderful to know that all that research is going on even at the times I'm kind of dim about it or just get fed up with reading more on ME. I'm waiting for the issue where the cover says simply "AT LAST CURE FOR ME DISCOVERED!" I'll give you the address if you'd like although international postage costs might be prohibitive. (There's a web site, too, though I'm not sure but I don't think the entire magazine gets posted there.)And I've been fortunate enough to see a couple of the experts. Though of course there doesn't seem to be a cure yet, at least as far as standard medicine is concerned, but at least having external confirmation is a comfort.Someone has even put me on to a "chelation" doctor, although he must be like you because he winters in the south. And wouldn't you know it but the day I was told about him was his last day in his northern office for the season. I've lived down there and when I did I missed the winters terribly.And you're so right about the doctors. The advertising people missed this. Four out of five doctors can be wrong. In fact, sometimes five out of five doctors can be wrong. Yet still in the U.S. they bill prodigiously. Wish we had universal health care.Anyway, I no longer live in America. I live in a place called Red Sox Nation that is comprised of a large chunk of what used to be the north-eastern US. The BBC probably hasn't covered this yet because everyone's working overtime to keep it under wraps. But we just grew weary of so many of the mad things the Americans were doing--something in the water?--and decided it was time to separate. No hard feelings. But we want to be more benevolent--kind of a more compact and densely populated Canada. We're going to set up a medical system where you can get immediate care just by presenting a red sock to the person at the front desk.Yes, it is a struggle to get even the little things done. I'm trying out the jingo of "an overly tidy house is the sign of a life being squandered" and that's working for me 50/50. Perhaps I'm a bit tooooo good at it. But it helps to offload whatever can be.The problem of cotton wool in the brainpain is a tough one. The irony of not being able to make good sense of my own ME magazine, to remember all the technical terms from quarter to quarter. You never know what part of the brain is going to kick in and at what time. Off-and-on aphasia seems to happen to many ME patients. But not only does each of us have a kind of customized version of ME, but also there are peaks and valleys. I try to maximize what I do during the peaks. Often this results in overdoing, with a steep valley to follow as the result, so it's always dicey.But no, I don't think I'm hoping for too much--at least not in the long view. Patience, patience, you're right! I think the people are out there who knew about chelation vis-a-vis ME and more. I do wonder though whether they'll find me here in a sort of subset of an IBS group, when for me the IBS issue has been a complication of the ME, not the main issue. I'm trying to find ways to cast out my nets further. But the person who started my interest in chelation for ME, Ian Solley, author of the ebook on it, lives over there in Hertfordshire or something that sounds something near to that--the exact details are on his web site that Google brings right up.I'm afraid what I've found so far is a bit distressing in that--the residual Yank in me?--I wanted the quick fix. So I got at first very excited, and then just as quickly deflated. A roller coaster that went up to the top and then flew right down again. My problem is that the Solley program is intensive, requires a long investment of nearly all one's (depleted) energies, so I wanted to examine other options to be sure I was doing the right thing. What I've found so far are plenty of contradictions. Much to sort out. It will take time. And then I must decide; first, even whether to pursue this before any exact how. Have been on some long and tough regimens that yielded nothing. So I'm not wanting to jump right into another without turning over any stone I'm able to examine with requisite thoroughness.Present state of the chelation thing: up in the air. But I'll try to remember to post whatever progress I make if when and as I go ahead with this. We are working on it, if in fits and starts. An agony in eighty-eight fits. Hunting that bad animal the snark.You can never hope for too much of the right thing. And as Werner Hertzog put it, "even the small people had to start somewhere," echoing your own sentiments.Onward, then.All the best from Red Sox Nation







,gijoe88 oxoP.S. Another M.E.-afflicted American working overtime is Laura Hillenbrand. The recent film "Seabiscuit" was based on her book of the same title, written under EXTREME duress. Poor woman was so ill that she went to ask her mother to hand her her "shoes" and instead she asked to be handed her "macaroni"--talk about cotton on the brain. It was all written up in "The New Yorker" magazine. And she's been so ill she had a very odd symptom I've never heard of in anyone else with ME--her shoe size actually shrunk by two numbers, so that when now and then she'd manage to go outside she'd clip-clop down the sidewalk. Yet somehow, sentence by sentence, she slowly put together her very well received book. I guess all this striving could be part of why the doctors and others sometimes have trouble here--we're trying too hard to "act" well whenever possible, even though that can carry a steep price tag. Oh well. Best--


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## 17210

Hey there stillhorn,Saw your posts on the general chelation blog; looks as though more is happening there than on the Solley-specific blog and that there are now more members of this club. I'm sorry if I hurt your feelings by saying I wanted more members, but I only meant that we need a lot of input to sort this out.As I said a moment ago on the other blog, I got an email from my potential chelation doctor and he said that Solley is absolutely wrong about the potential for harm with chelation, while Solley says that harm can be extensive, like physical kideny damage. I'd prefer for now to err on the side of caution.But at least something is already working here. It's either that harm by IV chelation is possible or it isn't. To me, once the problem is clearly defined, then a conclusive answer is possible.Now, how to get that answer?Again, my thinking is from anecdotal evidence, from first-person accounts. Unfortunately, if I got The Big Answer, I'm afraid I might never want to hear about ME/CFS again. People might be out there cured by chelation, either the Solley method or another, who are no longer shaking down the web for info or participating in discussions. Hope not.Anyway, again, so sorry (so Solley?) if I put you off, stillhere. I'm just keen to get an answer. I go through phases of exasperation where I can't read a word about ME, then I stumble over something like the e-book and I wade back in. I had been in "waiting for cytokine blockers" mode, which was comfortable if not doing much for me. Now I have to try to sort out chelation, and it's proving to be a bear. As I keep saying, don't want to go through another grueling medical regimen that fails--it's the emotional cost that's the worst, the way it's like a kick to the solar plexus. So if I get short about it please excuse me. I'm just trying to avoid another big disappointment.At least I didn't get into the Ampligen trials, which a few years ago were all the buzz. Now those who seemed to be the "fortunate few" who got in now rue the day they did. Ampligen seemed like the best thing since sliced bread because it came from "real medicine" for once, and down deep that would be my preference over what one of my doctors recently dismissed, derisively, as "roots and berries" even though he didn't have any answers of his own. But if the answer does come from the "roots and berries" quarter, I'll gladly take it. In any case, the people who were on Ampligen are now saying it caused a permanent worsening of their conditions. I don't know if they're saying this sort of at gunpoint--because bigger pharmoceutical powers were down on Ampligen--or whether they're telling the plain truth. Ampligen applied to several diseases, including AIDS--which I know the mention of causes many with ME to flee because of the fear and stigma. But we've got to put away false pride and see that clearly ME has parallels not only to AIDS but to MS, Lupus, and a number of other autoimmune conditions. My point is that if Ampligen were so wrong, why did two AIDS patients die almost immediately after being taken off of it? (I'm not sure, technically, exactly how it worked, but it was kind of an "immune balancer" so that if you have deficient immunity, as with AIDS, it was supposed to function as an immune booster, whereas if, as with ME, you have mainly an overactive immune system--with a few exceptions like TNF--it was supposed to cool it down to normal. Also, the ME patients who first got it were so taken with it that they actually had an act passed in Congress that they'd be guaranteed a liftime supply from the manufactorer, Hemispheric Pharmaceuticals. You had people who hadn't been able to get out of bed jump up and start playing golf. Naturally, the government and HEM renegged, leaving these people to twist in the wind. Welcome the the Homeland. And there have been mysterious rumors about DuPont--I think it's them--squashing the research because it would cut it to their multibillion-a-year AZT profits. We're in a real David and Goliath situation here people; don't kid yourselves into thinking all doctors are just a little bit "ignorant" on this issue; it would appear to be a lot more sinister than that.)Oh yeah, and here's another kicker. I was rejected for the Ampligen trials (or was it the tilt table trials?) because I admit to having had some drepression over ME. My contention is that if you get a disease this disabling and were NOT depressed, then you'd really be crazy. But the NIH and CDC have put a cruel double-bind into their "official" list of symptoms that qualifies one for the ME diagnosis. Simply on the most obvious level, "depression" as a disqualfier is idiotic. Do you think Chris Reeve didn't have his rough patches? The fact that the NIH and CDC have made depression a disqualifier in fact disqualfies any validity their ME criteria might have had, and shows them up as part of the "evil empire" that official medicine is turning into.There must be a special place in hell for those who deliberately oppress the sick even while shaking them down for tons of money. May God have mercy on them because they're sure going to need it.Thus ends sermonette #250058.Best to y'all,gijoe88


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## 17210

Whoops, sorry, I meant stillhere. I guess I'm "still there" in sleepyville. Sorry again.gijoe88


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