# epstein-barr



## 13693

Hi all,I have a question here regarding epstein-barr virus.Basically the background is this:I have heavy metal poisoning from an occupational exposure a few years back. Secondary to this I have intestinal candidiasis as the metals make me susceptible to fungal infections. So I have fatigue, GI upset, joint problems and occasionally it upsets my mood.Last year I had a girlfriend who had mononucleosis about 6 months before I met her. This summer I kissed two ladies and both of them got mono (1 confirmed by test, 1 just symptoms without test).Now I've never had classical mono symptoms - and even if I did I might not notice with all I already have - but over the last year I've had regular bouts of fatigue (on top of the fatigue I'm used to - periods of more severe fatigue), and also getting a feeling of pressure round over my spleen(left flank) together with bloating in the upper left quadrant of my abdomen. Usually I'll ahve a touch of jaundice at the same time.So my quesiton is for anyone who knows about epstein-barr infection, could I have a chronic epstein-barr infection. has anyone had this ? Do my symptoms match.I'm going to get a test anyhow but I just wanted to know if the symptoms fit, or if I'm being totally paranoid


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## 13693

er....helloooooo ???is there anybody out there ????


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## 17482

Heyho Stillhere, my name is Wendy.Things have been a little slow here, it seems fibro and cfs has us all busy just getting through the days, i can't help you with your epstein-barr question im afraid, but this site has some wonderful people on it and im sure when 'flare-ups' etc, subside you will get some info from one of us. best wishes Wendy.


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## M&M

Sorry, I have absolutely no idea. My best suggestion is to do a Google search on "Epstein-barr", or look for a forum somewhere that is on that topic.Hope you can find some information somewhere! Sorry I can't help, but that is definitely outside my realm of so-called "expertise". lol


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## 13693

Thanks for replies.I did google it - could find basically nothing on it. All I could find was surprisingly from very mainstream sources which said its been reported to happen but very rarely and only in immunosuppressed people. Since heavy metals can screw with the immune system this is possible I guess.In any case I had a test done and will get the results in a day or two. Also got some bloods taken so that should give some rough clue if my immune system is behaving or not.


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## 17210

Actually, they dropped the name "Epstein Barr" (sp?) in the late eightes because the antibody tests didn't coordinate between those sick with this and the control groups. Some people tested high for EBV and were well, and some very sick people had normal EBV antibody levels. That's when they came up with the terrible term "chronic fatigue syndrome" or later "chronic fatigue immune-dysfunction syndrome"--and that little term "fatigue" gave people the idea that we were just kind of tired or something. Hence the phrase "I'm not sick of being tired, I'm tired of being sick." This thing is real in every sense. So I prefer "M.E" for "myalgic encephalopathy" because, while it's not a perfect term, at least it gives other people the sense that this think is no little joke. There may be another virus involved, but not EBV. See the book "Osler's Web" by Hillary Johnson, google the National CFIDS Forum and look at their quarterly zine, and look into what Ian Solley in England has come up with--a downloadable book on a possible cure, lots of stuff about metal toxicity. (Especially important notes on NOT taking the metal out by methods that could be harmful in other ways.) His downloadable book can be found on http://www.amazon.uk. With best wishes.


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## 17210

Quick add-on WARNING to stillhere and anybody tuning in. Hey again. I just mentioned the ebook by Ian Stolley, and it looks really good, but he does recommend coffee enemas, and I've heard these can be very harmful, even fatal. Anybody know for sure on this? Know of a fatality? I'd really AVOID them until someone can say definitively. Sorry for any mix up. Take care, people. Be well. gijoe88


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## 17210

One more specific for stillhere. Google "National CFIDS Forum" or "National CFIDS Foundation." The woman who runs it, Gail Kansky, has tons of specific technical answers to many of these related questions. If you don't have "CFIDS" she can probably direct you to some other right place. She'll understand about the metal toxicity and all that. Please DON'T google plain "CFIDS" "CFS" "chronic fatigue syndrome" etc.--there's a mountain of misleading information out there. It's smart to be paranoid about this--just take a look at Hillary Johnson's book "Osler's Web" (Crown, 1996). And, this will sound cryptic, but you might be doing yourself a favor to avoid any national organization based in or around North Carolina just because--I don't know--the tar that gets on people's heels or whatever seems to have a distorting influence on the view of autoimmune diseases. Hope this helps. gijoe88


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## 13693

Thanks GIJoe - I'm looking into that stuff.Can you tell me though if you have the ebook - what is ian solley's recommended method for metal chelation ? This is my little test to see if he knows what he's on about as I know a bit about this myself by now.thanks


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## Clair

Hello there







Just wanted to highlight that Epstein-Barr (glandular fever) and Chronic Fatigue Sydrome/M.E. are two seperate entities.Where Epstein-Barr comes into the equation for discussion concerning Chronic Fatigue Syndrome, is medical research from the 80's and through 90's that thought enteroviruses (such as the HHV viruses) were the cause of Chronic Fatigue Syndrome/M.E this is however not conclusively proved.I think we need to remember they are two seperate medical conditions even though they have 'fatigue' in common. Epstein-Barr is a HHV infection and can be conclusivly proved with blood tests, while Chronic Fatigue Syndrome is a diagnosis of exclusion, that is that is the diagnosis you are left with when all else is ruled out...and usually all bloods and routine tests come back within 'normal' ranges.I think it is possible to carry HHV such as Epstein-Barr without displaying classic symptoms, as is probably the case with many illnesses, some people are carriers while others are the sufferer's.I think where CFS becomes involved is that a certain percentage of CFS/ME sufferers have experienced an episode of Epstein-Barr anywhere upto 10 years prior to onset of CFS/ME.Stillhere - I think if you do have Epstein-Barr then that will come back on your blood tests, whether it is responsible or not for the extra fatigue? I think really only your medical professional or consultant can give you any indication of that. However, I do hope they can give you some answers and if where possible hopefully find a treatment to help you on the road to recovery


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## 13693

Thanks everyone - I got the test back and it came up negative - one less thing to worry about. I'm getting over whatever virus it is i have got right now (cold/flu whatever).


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## 17210

Dear stillhere,Yeah, I did buy the e-book and I'm a little overwhelmed by all the technical detail. I didn't know that certain types of chelation can be harmful--at least according to the this book, which seems to indicate that Mr. Solley is, whether right or wrong or somewhere in between, pretty much well-informed. Solley's program is basically a long-term detox. He feels that intravenous (IV) chelation can be effective but can have potentially serious downsides. Instead, he recommends oral chelation therapy (pills, I'd assume, some of which he names) along with a lengthy program of other things (like nutritional changes) and that this all be done in tandem ONLY WITH A PROFESSIONAL. Lengthy prepation, months on the detox. The gist of the change in diet is to remove carbohydrates so that the body can break down the fats where the metals are supposed to be stored. He also provides a long list of supplements from the simple well known ones--like Vitamin C--to what seem like proprietary products, like one called "Phos Call", that I've never heard of. But he emphasizes doing none of this on your own and not until prior testing has been done. He says that the particular detox program has to be customized for each patient, and treatments can vary widely depending on the results of testing. Some of his tests I'm doubtful about--like hair testing, though perhaps metal poisoning is one of the few things it does work for--and others seem more standard, like a blood test called RAST which tests for Immunoglobin E antibodies. After your condition has been profiled by these tests, his suggested treatment plan can have wide variations. For people who test positive only for intestinal parasites, the treatment seems relatively simple. For people where metals are more prevalent, he recommends a more complex plan with more of the supplements and all that. I should emphasize that the book contains a number of links to other sites, and I haven't really begun to digest (pun intended) all of this yet. Frankly, I'm kind of on the verge of being depressed at the length and complexity of the program, and at the involvement of proprietary nutritional supplements, some of them expensive. On the flip side, I'm kind of cautiously encouraged that a possible cure exists. So, stillhere, I'd be very interested in what you know about chelation and where this new information lands on your validity meter. I've noticed that there are a lot of infomercials recently about chelation, and I'm wary of getting taken by a medical fad. At the same time, I've had the M.E. (CFS) for over two decades, with the IBS part of it showing up with intensity for about the last eight years, so I'll pretty much try anything within reason at this point. I feel like I still have a lot more homework to do on the program Mr. Solley suggests--it seems like a big commitment.By the way, Epstein-Barr can of course be chronic, although I'm not sure whether standard medicine claims that it can be happening "under the radar"--i.e., if your mono spot is normal and you have "normal" EBV antibodies. High EBV antibodies are not necessarily an indicator of illness--they may in fact indicate that you've encountered the virus recently and that your immune system responded well. Also, as you get older, the EBV antibody level may elevate because all viruses (sadly) apparently remain in our systems once encountered, and with aging your immune system may be doing more to fight off what's already there or to fight off an internal recurrence. There is a good blood test for M.E. (CFS) that, while it doesn't involve antibodies, seems to be a common indicator. It's the ACE (angiotension converting enzyme) test. There's an article out there about it by Dr. David S. Bell and someone else. Reads like advanced math from an MIT term paper. But the result is pretty simple. There's a normal number (not sure what it indicates), another number for people with sarcoidosis in which something goes wrong the skin tissue (although it can also affect the nervous system--it nearly paralyzed the actress Karen Duffy and her doctors had a long difficult haul making the diagnosis), and finally yet another number for people with M.E./CFS. The numbers are at distant intervals on the ACE scale, with the possibility of an error at something like +/- 3%, so the test seems really solid. The fact that the general medical community has never picked up on this very simple blood test is another reason that I'm paranoid about this whole business. They've gone from "it doesn't exist, it's all in your head" to "it exists but we can't find it" when in fact someone with no official medical background like me knows a simple way to find it, to make a definitive diagnosis.Anyhow, I'd really like to know what you think. I've been through some expensive alt med programs that didn't work, and if on top of the expense you have to put a lot time time and energy into it, the failure can be a real emotional downer. But it's a cruel choice because if you DON'T try something you feel you might miss the chance to get your health back, yet if you DO try it and it's bogus and you've put your all into it, it's a nasty kick while you're already down.So I'm going to take my time with this one. The trouble is finding a doctor you can trust and who'll work with you. I don't know if I've mentioned the new meds called cytokine blockers, but I've tried many ways to get into a study on them and so far, nothing. Trying not to get fooled (again),gijoe88


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## 17210

P.S.Sorry for the little gaffs.Also, should say that the downside to IV chelation according to Solley--and I have no way of evaluating this--includes really bad stuff, like physical kidney damage. So, one way or the other, procede with caution.Also, sorry to contradict you, clair, about M.E./CFS being a diagnosis of exclusion. My understanding is that a positive diagnosis can now be made using the ACE test. Sorry to have to say this, but it can be dangerous to rely on the diagnosis of exclusion solely. Gilda Radner did--of course, it was long before the discovery that the ACE test could apply to M.E. as well as other tings--and she wound up dying of ovarian cancer, which was discovered far too late because she was being treated for "chronic fatigue." So I don't mean to hurt your feelings, but this stuff can be life-and-death serious and so has to be said. All apologies, in any case.Also, to anyone out there who has info on the use of chelation or cytokine blockers for M.E. and/or IBS, especially experiential info, I'd be very interested. I don't know whether to pursue either one, and, if so, which one to pursue first.Y'all get well soon.Best wishes,gijoe88


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## 13693

wow gi - thanks for the long answer







I'll try and answer what I can:So...1. IV chelation - yes can be dangerous2. oral chelation - can also be dangerous - I follow something called the Andy Cutler program. I've tried a few other programs and I've found this to be the best - it is long term - frsutratingly so - but I think it is the proper and safest way to do it (that I know of)3. monospot - as i understand it this will only show up an active infection. to pick up a subclinical one i think you would need different testing. anyhow - the doc already thinks i'm a hypochondriac so i;m not going to push for that. I have been taking herbal antiviral supplements that last week or so and my liver and spleen seem to be behaving more4. ACE test....interesting -- I've not heard about this - I'll check into it.


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## 17210

P.S. again.Sorry also for the typing errors etc. But better to get the information out.I'll try to spell when I'm well.Embattled,gijoe88


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## 13693

don't worry about spelling errors - we have bigger worries than that !!


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## 17210

Long answer not a problem, stillhere.Plus, you gave me just the kind of answer I've been looking for--I've never heard of the "andy cutler" program and will look into it.I got all excited on stumbling over the "ian solley" program and, back when, would have waded in without giving it much thought. And I'm kind of vulnerable right now because I've had too much frustration in trying to make progress with the cytokine blockers.Now I'm more wary and want to take a careful look at all the options.Can you give me specifics on where to get info on the "cutler" program?Also, will all these messages be deleted after a month or so? I kind of need this stuff on file. Do you--stillhere or anyone--know how to keep it? Also, is there a way to do spellcheck within this blog? (I've never done blogs or chats before.)Much thanks,joegi


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## 13693

Sure,his website is http://www.noamalgam.comhe has a couple of books - the first one is Amalgam Illness: Diagnosis and Treatment, which I read. THere are also a couple of yahoo group lists adult_metal_chelation for general chelation issues and frequent_dose_chelation which is specifically on the cutler protocol. people there are helpful and some know alot.I don't know how long these messages stay up and sorry I don't know about the spellcheck


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## 17210

Thanks.Just googled and found the cutler website. My initial take: necessary but not sufficient. The e-book goes way beyond amalgam toxicity and talks about metals other than mercury, and that we can get them just from our foods and so on.If I seem too hasty about this, it's because some years ago, when my fillings wore out, I had them all replaced with composite-only fillings by a very good dentist savvy about the amalgam problem. Ever since then, I've had only composite fillings, and I wouldn't have amalgam fillings except perhaps at gun point, but I'd be thinking: what's worse, lead or mercury. In any case, the result: no real improvement.But if you ever watch "Imus in the Morning" with the crusty but heart of gold Don Imus, he's all over the mercury/vaccine connection, especially as regards autism. His wife Deirdre is heavily involved in trying to get the government to step up to the plate on this. And the other day Imus himself was just complaining that he wanted a flu vaccine without mercury and even his blue-chip doctors couldn't find one for him. So he's on to how mad it is to use mercury on anyone--children or adults.Special to stillhere. Two things. 1) You seem to know a lot. Now more than ever I'd like to hear your review of the Solley book. It will set you back some (I forget exactly how much), but I can already tell he has more to say because mercury is only one of the many things he deals with. Also, 2) if this forum allows, is there any way we can actually communicate? I'd have no problem giving out my email or even phone, because I just really need to solve this. As long as you're not a stalker or anything. And if you're uncomfortable, I have no problem with unilateral communication. And sorry if this is against the rules of the site or anything, but I have enough frustrations without always having to mediate through the blog.Kind thanks,gijoe88


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## 13693

Yes - too hasty.I'm currently reading Andy Cutlers other book which has info about more metals than just mercury. His first book Amalgam illness is about mercury detox but it contains alot of info about other issues - CFS/IBS/FM and a whole bunch of other stuff. Its well worth a read - you can read the first chapter for free on amazon.comok big statement alert: Most of the dentist and doctors who actually recognise mercury as a problem DO NOT know how to treat it properly and use dangerous protocols. I read up on Cutlers ideas about mercury transport alot in the medical literature and it seems to check out (haven't checked into alot of the other stuff). here is the extract:http://www.amazon.com/gp/reader/0967616808...j=0#reader-pageAs regards the Solley book - I've emailed him and am waiting for him to convince his book is worth spending my money on.As regards communicating - well if I were in different circumstances then that would be fine, but I really have too much to deal with at the moment, I'm going through a rough patch, and I already have someone who emails me about stuff - a friend of a friend - and I find it stressful. Sorry!Oh - another thing - alot of the content in andy cutler's book is available online - if you go to the chelation yahoo groups they have arhived files of some of the stuff


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## 17210

Sorry about the haste.I went to the amazon link but all they seem to have is the culter book on amalgam.I'm probably to indiscreet to be online, but I went to the particular dentist I mentioned because my shrink at the time recommended him. My shrink was also indiscreet--it can be a good thing--and when my fillings started wearing out he told me on the QT that another of his patients was a dentist obsessed with dentistry. The bad part was that the dental obsession was in danger of breaking up his marriage because he was spending so much time at the office and going to dental conferences that his wife had started having her suspicions. Bad for their relationship but great news for dental patients. The guy is extremely smart, kind, and probably the most knowledgable dentist in the country, with an upscale practice in an upscale town. He had protocols about the protocols, and then updates on those. So way back when he already knew about Huggins et. al., used refridgerated novacaine without any preservations, the whole deal, so I'm sure I probably got the best treatment available in the country, if not on the planet. I just hope the marriage remained intact.I can't quote you any more from the Solley book because to live outside the law you must be honest but I emailed him with my concerns and he answered me quickly. Seems to be on the level that way. I'm just really iffy about the propriety products aspect.Sorry but I understand if you don't want to communicate outside the blog or whatever this is. I'm just sorry that this info might be gone in a month. Do you know where I can blog somewhere that the stuff will be archived?I feel like I've just dropped into "chelation world" and it's all new. May have to drop out for a time and read up on the topic. And I've got a note in to a chelation specialist, but he leaves this part of the country for Florida at the end of--you guessed it--October. And thus far he's the only referral I can get. What is the cutler book that goes beyond mercury called? (Amazon only seems to have the mercury one.)My instinct right now is that cutler is necessary but not sufficient and that while solley goes a bit further he's also necessary but still not quite sufficient. Don't mean to cast aspersions, and that's not verified, but just (pardon another pun) my gut check of the moment. I'm really uncomfortable with the propriety products aspect, for one thing. And the viral aspect of M.E./CFS, which was pretty well verified by a research named Elaine DeFreitas years ago, doesn't seem to be on Solley's radar. Could be that if you have a true detox the result is that the immune system rights itself enough to overcome the virus, but it would be reassuring to see this addressed directly.Oh wow, this is all so very complicated. Not feeling very key-lated. It's like the old Mr. Natural cartoons: "Found a cure!" "Ooops--possibly not." "Found a cure." "Oooops, lost it." "Here it is!" "Wait--" And so on.Let us know what Solley says, and your final disposition on whether he's got the goods in your considered opinion.If I disappear for a while, that's life in M.E.-world, especially when IBS is one of the complications.Oh, and one more thing--what about Zelnorm? Could that be a quick and easy fix to at least part of the problem?Best wishes from the front lines,gijoe88


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## 17210

Dear M&M,Thanks for hosting this. Great job.I've never used blogs or anything but stumbled on this one when I googled something.Need to know: is everything here going to be erased in a month or two? If so, is there someplace else more permanent I can communicate with--either within IBS Group or outside of it? I'd hate to think I'm typing in all this stuff--and reading all this other useful stuff--only to have it erased. How do I keep stuff in the blog/bulletin board environment? Do you archive this stuff or not?Thanks for any help you can give.All the best.gijoe88


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## 13693

I have no idea what zelnorm is.good that you saw a good dentist.solley seems genuine at least - i'll let you know what i find out.i did some checking and i'm now reasonably sure the monospot test would not show up a chronic infection - it tests for something called heterophil antibodies which are only present in numbers for the first 4 weeks or so of infectioncutler - necessary but not sufficient - possibly - I've found him quite helpful on yeast issues to. I do know chelation is not to be taken lightly and he knows more about it than anyone else I've come across so far - I daresay he could argue rings around huggins, ACAM or other pro-chelation folk in a debate. I consider myself to be treating myself with input from specialists such as himself - I also use things I've picked up from various docs over the years and some things I've copped on myself (like apples - sometimes I get mildy constipated and bloated under my left ribs, and more often than not eating an apple sorts it out - why no idea - but it seems to work)sorry don't know about blogginghey an idea for you to learn more about chelation - go on to the yahoo groups and ask questions - in particular there is a guy called "tk" he is very knowledgable and is a useful source of info on a wide range of topics


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## 17210

Thought I sent the blog question to M&M.Yeah, have all kinds of weird dietary issues--things that seem to help some, things that seem to harm.Zelnorm is a new prescription drug that is supposed to be the leading edge treatment for IBS. It promotes peristalsis in the lower intestine. Since M.E. affects, among other things, the autonomic nervous system, I thought perhaps the signal wasn't getting down there to promote the peristalsis (sp.?). If I could offload just the IBS complication from the M.E. I'd have one less thing to deal with. Of course, you'd have to ask your doctor. Don't know about risks, side effects. Haven't been able to getting Zelnorm yet.One thing that did amaze me big time in what Solley has to say is that you can't get past the yeast if metal is still a problem. Because years ago I did the yeast/candidiasis thing to the max with zero results. They were sure there was no more yeast, yet I continued to feel just as bad. Went through a ton of nystatin.Only "Osler's Web" by Hillary Johnson will give you the whole low-down on EBV versus M.E./CFS. It's a long Russian novel of a book but she's a professional journalist who contracted M.E. herself. Don't know how she managed it, but she wrote a brilliant book only to have it more or less ignored.Noticed one of your postings somewhere else about the abilitity to "hide" this and all. Hate to have to say it but if you really have M.E. then it would be immoral of me not to tell you that you can transfer it to a partner. Husband-to-wife transmission and vice versa is all too common. Also, you should never donate blood until all this is sorted out. You could always join a support group and find someone that way, provided you both first have the ACE test to make sure she isn't someone who's been misdiagnosed. Sorry to have to say this, but it's crucial. Also, the epidemiology suggests that blood products are not the only problem--the pathogen apparently can be airborne etc. Curiously, the people most at risk seem to be genetic relations. But people have alledgedly even given this to their pets. In a famous case that was in NewsWeek, a woman named Nancy Kaiser, also known as "patient zero" in the test of a med called "Ampligen" (avoid now at all costs) that once upon a time was supposed to cure all our problems, gave M.E. to her dog and had to have him put down. But a Dr. Paul Cheney--this is all in "Osler's Web"--has done some of the most harrowing epidemiology. He describes a case where a woman with M.E. came from South Africa to visit four or five groups of relatives living in the US and Canada, all blood relatives. In each group, at least one person became ill just through casual contact. He also says that the same pathogen that causes M.E. can also manifest in a non-obvious way where it brings down a person's immune system over the course of about a year, even though while this process is going on they don't feel sick. Then it always shows up as either one in a particular group of brain tumors or as non-Hodgkins lymphoma. Heavy stuff. So, you'll be surprised to learn, we're actually among the "lucky" ones. For whatever reasons, our immune systems kicked in to some degree. Hope this doesn't make you feel too bad, but you'd feel worse if you inadvertently gave this to someone, right? Anyway, as I was explaining to Clair, my life is too messed up for me to be lonely anymore. Or even depressed. It's like I'm in some kind of alternate universe where all the rules have changed. It's tough at first, but you do get used to it.So I'll check out Yahoo and tk etc. How do you find a yahoo group? I think I'm getting all chelated out. Sometimes I have to drop something for at least a day and then get back to it. It's one more minor nightmare that chelation has become as complicated as everything else. A friend was supposed to take me to an expert on cytokines to whom she has a kind of special access and while we were planning the trip her son got a serious illness that will delay the cytokine trip for at least a year. I'm starting to feel like a casino "cooler." Feel guilty that her son is ill now, even though I had nothing to do with it--she's in Chicago, I'm in Massachusetts. Can't win for losing. Yet at the worst moments I always remind myself just to hold on and, as has always happened in the past, within a few days the emotional weather has changed again.Keep on keeping on,best,gijoe88


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## M&M

Hi gijoe!







Nice to have a new comer to the forum. I'm glad you are enjoying this website, it's great to find people who "get" what you're going through, and it's great to be able to exchange ideas!The posts and threads on this Message Board are never erased. They just stay here, forever and ever. (Well, maybe not forever, but you get the idea







)There are posts here from all the way back to 1999. You can save the information on your own computer if you like, but it should always be here for your review. To access old posts, all you have to do is browse other pages in this forum. On this page right under the words "Fibromyalgia (FMS) and Chronic Fatigue Syndrome (CFS)" you'll see the word "page" with numbers next to it. Click on any of those numbers to see old posts from years past.Another way to access old posts is the "Search" function, found here.If you are interested in starting your own Blog, we have a Blog community for members of this online community! You can find it here.Hope this helps! And welcome aboard!


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## 17210

Hi M&M!







Thanks for moderating the forum, for the info, and for the welcome.Nice to know the info will still be here if needed.All the best. Take care.gijoe88







P.S. Any spellcheck function?


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## 13693

yeast and candida: yes there is a relationship here. Solley sent me an extract from his book on this. I ahve to say I disagree with his reasons as to why this happens - howecer the basci point of candida not going away until the metal goes would seem to be accurate - its certainly my experience.OK - I don't have ME so I can't infect anyone. I have metal poisoning/ candidiasis and possbily some latent virus which is why I had the EB test. so my symptoms are similar to ME. I'm looking into getting more testing done to see if there is a virus (due to symptoms I suspect either EBV or CMV). Its only very recently I ahve any reason to suspect i might have a virus.Yes I know what you mean about being beyond depression and beyond loneliness. I was like that for quite a while. However one of the aforementioned ladies reminded what real life is like and I'm feeling that depression and loneliness alot right now.


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## 13693

oh and I don't give blood anyhow as I've previously had jaundice of unknown cause.


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## 17210

Dear stillhere,Sorry to hear you've been down. It's off and on. Times when I think I've got it settled and I'm on even keel something will happen to throw me off my balance again. I try to accept this as my "real life" for now anyway but easier said than done.The technical part of it is also thorny. I'm not sure I've had yeast/candidiasis, parasites, or the thousand other things I've been treated for. I'm not sure I have metal poisoning, at least beyond the point of any other person living on earth at the moment, except of course in special cases like yours where you got it on the job. I don't know for certain where there's a specific M.E. virus (although instinct tells me there is) and where or not it's still active in my system or, as some theorize, that it came in, disturbed the balance of the immune system and left.I agree with Clair on the diagnosis of exclusion in this sense, that it at least can tell you what isn't happening, so I still have to go back to the ACE test--it's an inexpensive common blood test and would settle the M.E. question for you definitively. The problem is, Marcus Welby, M.D. down the street is probably not onto ACE as an M.E. marker and might even be hostile to the concept. Unfortunately, my copy of the original paper by David S. Bell, M.D. (and someone named before him) is lost somewhere in the vast confused heaps of clutter that 25 years or so of chronic illness and relentless medical sleuthing and treatments have produced. It was published in a legitimate journal but not one of the major ones. If you can't find, to the best of my recollection the M.E.-marker number (some many milileters in a CC of blood or something?) is somewhere in the 600 range, whereas normal is like 300 and sarcodoisis I think around 800. (Those are rough guesses from a bad memory.)I'm not sure what it would buy you to know you have M.E. except a) you could protect others to some extent and







I always think that knowing is half way to getting there, to getting to a cure c) at least you'd know what you're deal with in full (even though the metal poisoning and candidiasis are also factors).The issue for me is, what is the underlying factor. What can a target for treatment that would effect a complete cure? In her short but convincing boo, "Illness as Metaphor" (also great for people who've been made depressed by the "it's all in your mind" theories or "it's your fault for thinking negatively, for once eating at McDonalds, etc.), she makes a good case that in the early stages many diseases are often thought to have multiple causes, but that as the science shakes itself out they usually come down to one cause or one pathogen. She goes back to Pasteur's original but still very relevant metaphor of seed and soil. Yes, some things can prepare the soil, weaken the body for disease (like metal toxicity); other things, other conditions, sequallae, can develop as a result of the presence of the disease (like perhaps candidiasis). But for a total cure, the essential cause has to be found and dealt with. This one-cause theory might have a few exceptions, but in general it seems to apply.So in my trying to solve my M.E., I've been trying to get at that central cause. Of course--during the waiting time--I'm willing to use whatever symptomic treatments I need or that help in some way. The model in my head for my head for many years has been that a virus, whether still active or not, is the essential pathogen, and that it has thrown my immune system off balance. I've surmised that the main reason for my being "sick" (and it is "sick" and not "tired" except in an unusal way) is that in general my immune system is too hard-charing, spewing out in most cases too many cytokines (like interferon and interleuken) and in a some others too few (like tumor necrosis factor or TMF). This has been my working theory. And I've found that new developments, new changes in the disease, almost always conform to this theory in some way. At the same time, I haven't gotten very far. Not only is there no viricidal drug for these, but I can't even find anyone to work with on the emergent class of cytokine blocking drugs. (This is especially odd because two years ago almost died from congestive heart failure. They said the cause was "idiopathic"--which of course just means no one knows. But then I bought some books on heart failure and a common cause is cytokine toxicity to the heart. Big light bulb went on. I mean, I've been told for years that my major problem is excess cytokines. So I went running back to the doctors and they wouldn't deal with it. A neurologist even told me that he knew M.D.s working with the new cytokine blcokers, but he refused to give me any of their names, even though I stated I'd sign any waiver he needed. This isn't a medical case; it's become more like an X-file.)Anyway, I'm open to shredding my theory if something convinces me otherwise. Such as that metal toxicity is the root cause. And I don't even need a theory. For instance, removing harmful metals might restore my immune system to normal (restore the soil, in Pasteur's terms) and, even if a virus has been causing the problem, with the burden of the metal toxicity removed my immune system might just bounce back and be able to now fight off the virus on its own.I'm kind of down on one level myself today because the promise of chelation is starting to look much more mixed and iffy than when I first encountered it. First, that there are so many disagreements on how to do it properly. Second, I'm not convinced that even if it were done perfectly that I'd get well. And, this is probably the most significant one for me, the whole chelation deal is starting to have the smell of another medical fad. For instance, I started paying attention to some of those informcials that I used to click off in the middle of the night and the word "chelation" seems to be flying out all the windows of all the travelling snake oil wagons, with whom I've done my time out of desperation. It's new new buzz word. When I started with M.E. it was "hypoglycimia," then that the over-worked lifestyle we live had knocked down the immune system, then improper diet (a perennial), then candiasis, and now chelation. HOWEVER, I'm also convinced that the thymerisol (mercury compound) in vaccines is the reason for epidemic in autism, so each new theory has to be weighed and sifted as it comes along.If I could snap my fingers and get all the "bad" metal out of my body instantly, would the M.E. disappear like a fog? I don't know. I really hope so, but I'm having my doubts. For instance, I didn't get the slightest bounce--nor a healing crisis of temporary worsening--when they removed my mercury fillings. Is that because the stuff is now at the cellular level? Possibly, but I have no way of really knowing. When I got all the candida out--at least temporarily--there was no real change one way other I'm sorry to report.My instinct is that the candida is a red herring, a false lead. Why do people with AIDS who get severe yeast problems because of their lack of immunity present with white-coated tongues? I've never had a white-coated tongue, and don't know anyone with M.E. who has. So where is this yeast? I know you're probably not going to like my pointing up that fact, stillhere, because it temporarily would seem to only complicate your problems by taking the relatively simple yeast cure off the table. But if the yeast isn't really the problem, then curing it would be a false cause and only waste more of your precious and limited time and resources, right? Of course, I'd be completely happy for you if dealing with that and the metal issue made you 100% better. But I'd be remiss if I didn't give you this heads-ups and considerations from my long and often painful attempts to deal with my illness. I try to keep in mind the model of Edison working to invent the light bulb. A reporter said to him, "Mr. Edison, aren't you disappointed that you've tried five thousand substances and not one of them will work as the filmanent in an incandescent bulb." "On the contrary," he said, "I now know of at least five thousand substances that won't work as the filament in an electric bulb."Of course, I could be wrong and candida could still be playing some sort of a role in the whole picture. It might have to be revisited now that it seems you can't get at it if there's a pre-existing problem with metal toxicity. But my instinct at the moment is: no white tongue, no candida.My bigger instinctive take on it all at the moment (and these instincts change change from moment to moment, month to month, etc.) is a bit of a downer, so get a grain of salt ready. I'm not saying it to be negative but because it's what I really think, or at least strongly suspect. I suspect that, for me anyway, chelation has a high probability of being another one of the "miracle cures" that fall by the wayside, for me anyway. Doesn't me I'm not going to probably wind up trying it in some form--but not before doing a lot more research, reading. I really really REALLY hope I'm wrong this time. But I've been around this block, or rather blocks like it, so many times.A former Governor of Massachusetts frequently used to ask the question about various issues, "Does it pass the smell test?" I'm getting some early and kind of faint traces of a not-so-great smell that's leaking from the world of chelation. One example is that while Ian Solley is technically correct when he says that he doesn't sell any supplements or other products directly, he's tied in to purveyors indirectly through the links in his document. When you can "only" be treated with certain (usually expensive) proprietary products, put one hand on your wallet and the other on your nose and take a good hard look and what someone's selling you. Kick all the tires--twice. Doesn't mean he's necessarily wrong or engaged in any kind of flim-flam. But as an early sign, to me it isn't so good. Also, the chelation doctor I was referred has a book out (don't want to name names at this point) and it just has that look of "cashing in on the latest medical fad." Again, I do so so so hope I'm wrong. But you know the kind of book--guy's picture on the cover with an expensive hair cut and big headlines about how "this new vitamin plan will finall work!" All high gloss. Then there are the infomercials. Then there's my own experience with amalgan. And so on. All the signs seem to be saying "caution, pal."Still, I'm trying to keep an open mind. Oddly enough, my last name, Wilson, lends itself to the name Wilson's Disease, a rare genetic disorder that happens against impossible odds when both parents have the same defective gene at the same site. The result is that the body cannot eliminate copper, of which we take in a tiny trace every day. Normal bodies flush out the excess; these people can't. By the time they hit their thirties enough copper has built up in various places, especially the liver and brain, so that symptoms become manifest. But this disease is so rare that they often go undiagnosed, or get diagnosed with the usual "it's all in your head," with terribly damaging and eventually--if it's not caught--they die young and unnecessarily. It's sad because there are actually tiny but visible rings of copper that appear in the cornea--they're called "Kayser-Fleischer" rings--that make the diagnosis easy for anyone who knows what to look for. And guess what the treatment is for this disease? Correct, copper chelation. Though I guess it has to be continued over the entire lifetime. But if the disease is caught early enough, there's no damage or it's reduced or minimalized. I've known about this for years, so it would be ironic--what with having a shared name--if chelation happened to be the big answer to this I've been looking for. By the way, and I'm no expert, as far as I know these people don't get candidiasis.Regarding the epstein-barr issue, all I was trying to say is that the name epstain-barr virus was dropped by the NIH when no conclusive type of syncronization could be established between an elevated titer (antibody test for EBV) and symptoms. There were people with highly elevated EBV antibodies who were asymptomatic (in the control group), and there were people who had normal or below normal titers who were very ill. It was at this moment, around 1987 or 1988, that the name "chronic Epstein-Barr virus" got changed to the really horrible and misleading "chronic fatigue syndrome (CFS)." I know all about it because at the time I was seeing Irena Brus, M.D., a hematologist at Mt. Sinai in New York City who, on the side, out of a private office, was working on what were then leading and hopeful experimental treatments for the disease, which to her great credit she took very seriously. (One of her main issues was that the mitochondria, which generate the energy within each cell, appeared to be depleted and swollen in her patients with this disease and she was looking for ways to restore them.) She stood at the back of the room and argued strenuously for a more technical-sounding name, a more serious sounding name, but she couldn't get through. She's kind of diminutive, female, has a heavy accent, etc., and she felt badly but she just kind of got shut out, and the consequences have been negative in the extreme, I think, for M.E./CFS patients ever since. The gist of it is that, whatever the results, the EBV test can't tell you one way or the other as to whether EBV is causing your symptoms. Elevated titers might indicate that your immune system was actually able to fight off an infection, OR that you have an infection. Low or normal titers might be telling you that everything is okay OR that you have a chronic infection and your immune system isn't strong enough (because of the metal toxicity? something else?) to create enough antibodies to fight it off. You see the problem? (As for the CMV test, I don't know anything about that one.)So it's great that you're not giving blood until all this is sorted out. I also don't know if any metal toxicity can be transferred tnrough blood, or if the metals are already bound up in body fats etc. Also, are you positive about the metal toxicity? How was that determined? (Don't know much about that one either.) Was there a specific incident on the job? Or is this just something you were told in general? (Because I also have the queasy feeling that "metal toxicity" is on the verge of also becoming a fad for everybody, but of course it's no fad if you really have it; and perhaps it does affect us all with the deterioation in the state of the environment. It's just that I don't know if the people selling stuff off the medical wagons have the answers, or just want the dollars, and yet there aren't many other places to go because so much of standard orthodox medicine seems to be on the ropes.)Well, to paraphrase Bob Dylan, "I haven't known real life for so long I can't remember what it's like." Sorry you found it only to lose it again. Has me kind of hoping I can manage to avoid it for the duration. It's worse to be given a few new hopes and have them dashed than if they hadn't appeared in the first place. That's my point about the new--for me anyway--ideas about using chelation for whatever it is I've got. It kind of depresses me now to find out that it's giving off some questionable vibes, but what would be CRUSHING would be to go through a whole strenuous program for a year and have it come up empty. Been there done that I don't know how many times. So I'm really sorry if my doubts contribute in any way to your less happy feelings, but my own feeling is that I'd always rather get bad news up front, when it allows me to avoid even further mistakes that would lead to bigger unhappy feelings. I'm not big-time depressed but there's a streak of small-time depression in there, and I'm kind of chastened that some of the gleam has been lost from the hope for a chelation treatment, at least for me at the moment. Of course, your picture could be altogether different. And even if it isn't, never never never give up. Even if the perfect cure or treatment doesn't show up, I intend to keep living to the best of my abilities.Wishing you happy trails,gijoe88


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## 17210

P.S. Gosh, sorry for all the gaffs and errors in the immediately preceding post. Right toward the end of it something went wrong with my PC and it couldn't identify the mouse, so I had to rely on the pad in the middle of the keyboard which doesn't work so well for me. Also, something was going really wrong with the PC so I felt I had to rush to post the message before it got eaten by the computer. I'll see if I can go in and do some cleaning up. In the last post I was trying to make a definite statement and instead wound up sounding like I was gargling with a mouthfull of gravel. It's especially embarrassing because back when I was alive, before M.E. made me completely able to work, I used to work as a tech writer and of all things editor. So this is like Exhibit A in what M.E. can do to a mind. Perhaps I should keep it as is, but I'd feeling better doing at least a few repairs.Again, all apologies.The much embattled,gijoe


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## 17210

> quote:Originally posted by gijoe88.S. Gosh, sorry for all the gaffs and errors in the immediately preceding post. Right toward the end of it something went wrong with my PC and it couldn't identify the mouse, so I had to rely on the pad in the middle of the keyboard which doesn't work so well for me. Also, something was going really wrong in general, major system error, so I felt I had to rush to post the message before it got eaten by the computer. I'll see if I can go in and do some cleaning up. In the last post I was trying to make a definitive statement and instead wound up sounding like I was gargling with a mouthfull of gravel. It's especially embarrassing because back when I was alive, before M.E. made me completely unable to work, I used to work as a tech writer and, of all things, editor. So this is like Exhibit A in what M.E. can do to a mind. Perhaps I should keep it as is, but I'd feeling better doing at least a few repairs.Again, all apologies.The much embattled,gijoe


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## 17210

[Update with at least a few corrections, I hope. Yrs, Joe.]


> quote:Originally posted by gijoe88ear stillhere,Sorry to hear you've been down. It's off and on with me. I sort of worked through the depressions to a point of--probably insane--stubborness, but I'll take it. And not much time to be lonely. Although there are times when I think I've got it settled and I'm on even keel something will happen to throw me off my balance again and its back to being "kind of blue." Meanwhile, I try to accept this mess as my "real life" for now anyway but as you know only too well that can be easier said than done.The technical part of it is also thorny. I'm not sure I've had yeast/candidiasis, parasites, or many of the thousand other things I've been treated for. I'm not sure I have metal poisoning. At least beyond the point of any other person living on earth at the moment, except of course in special cases like yours where you got it on the job. I don't know for certain whether there's a specific M.E. virus (although instinct tells me there is) and whether or not it's still active in my system or, as some theorize, that it came in, disturbed the balance of the immune system and left.I agree with Clair on the diagnosis of exclusion in this sense, that it at least can tell you what isn't happening, so I still have to go back to the ACE test--it's an inexpensive common blood test and would settle the M.E. question for you definitively. The problem is, Marcus Welby, M.D. down the street is probably not onto ACE as an M.E. marker and might even be hostile to the concept. Unfortunately, my copy of the original paper by David S. Bell, M.D. (and someone named before him) is lost somewhere in the vast confused heaps of clutter that 25 years or so of chronic illness and relentless medical sleuthing and treatments have produced. It was published in a legitimate medical journal but not one of the major ones. If you can't find this paper, to the best of my recollection the M.E.-marker number (so many milileters per CC of blood or something?) is somewhere in the 600 range, whereas normal is like 300 and sarcodoisis I think around 800. (Those are rough guesses from a randomly ravaged memory.)I'm not sure what it would buy you to know you have M.E. except a) you could protect others to some extent and
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> I always think that knowing is half way to getting there, to getting to a cure c) at least you'd know what you're deal with in full (even if the metal poisoning and candidiasis are also factors, begging the question for the moment of which, if any, is the major one).The issue for me is, what is the ultimate underlying factor? What can I target for treatment that would effect a complete cure? In her short but convincing book, "Illness as Metaphor" (also great for people who've been made depressed by the "it's all in your mind" theories or "it's your fault for thinking negatively, for once eating at McDonalds," etc.), Susan Sontag makes an excellent case that in the early stages of the medical community's dawning recognition of particular diseases, many of them are often thought to have multiple causes. But over time it usually emerges that as the science shakes itself out they are narrowed down to one unique cause or one specific pathogen. She goes back to Pasteur's original but still very relevant metaphor of seed and soil. Yes, some things can prepare the soil, weaken the body for disease (like metal toxicity, "insults" to the immune system); other things, other conditions, sequallae, can develop as a result of the presence of the disease (like perhaps candidiasis or IBS). But for a total cure, the essential cause has to be found and dealt with. This one-cause theory might have a few exceptions, but in general it seems to apply.So in my trying to solve my M.E., I've been trying to find that one central cause. Of course--during the waiting time--I'm willing to use whatever symptomic treatments I need or that help in any way in the interim. The model in my head for this disease I've had for many years is that a virus, whether still active or not, is the essential pathogen, and that it has thrown my immune system off balance. I've surmised that the main reason for my being "sick" (and it is "sick" and not "tired" except in an unusal way, especially when I consider my severe insomnia) is that in general my immune system is too hard-charging, spewing out in most cases too much of a normally good thing, like too many of the self-generated disease-fighting cytokines (like interferon and interleuken) and in a some others too few (like tumor necrosis factor or TMF). This has been my working theory: too many cytokines are making me feel sick. Just as when you get sick from a flu or whatever, it's usually your immune response that is making you feel lousy (as with a fever, for instance) and not the pathogen itself. So far, it seems all the symptoms, developments, and modulations do conform well to this model. At the same time, I haven't gotten very far by way of treatment or cure. Not only is there no viricidal drug for this, but I can't even find anyone to work with on the emergent class of cytokine blocking drugs. (This is especially odd because two years ago I almost died from congestive heart failure. They said the cause was "idiopathic"--which of course just means no one knows. But then I bought some books on heart failure and a common cause is cytokine toxicity to the heart. Big light bulb went on over the head of gijoe88. I mean, I've been told for years that my major problem is excess cytokines. So I went running back to the doctors expecting big things and instead they wouldn't begin to deal with it. A neurologist even told me that he knew MDs working with the new cytokine blockers, but he refused to give me any of their names, despite my vehemently stating that I'd sign any waiver he needed. This isn't a medical case any more; it's become more like an X-file!)Anyway, I'm open to adjusting or even shredding my theory if something convinces me otherwise. Such as the possibility that metal toxicity is the root cause. And I don't even need a theory. For instance, removing harmful metals might restore my immune system to normal so that, even if a virus has been causing many of the problems, with the burden of the metal toxicity removed my immune system might just bounce back and be able to now fight off the virus on its own. I'm willing to throw away almost any theory for a treatment or cure that actually works.Today, I woke up kind of down on one level myself (see--it still happens) because the original shining promise of chelation is starting to look much more mixed and iffy than when I first encountered it. Why? First, that there are so many disagreements on how to do it properly. Second, I'm not convinced that even if it were done perfectly that I'd get well. And, this is probably the most significant reason for me, the whole chelation deal is starting to have a bit of a smell, the smell of another medical fad. For instance, I started paying attention to some of those infomercials that I used to click off in the middle of the night and found that the word "chelation" seems to be flying out all the windows of all the painted travelling snake oil wagons, with whom oh yes I've done more than my share of time in the throes of desperation. "Chelation" is starting to sound like their latest new buzz word. (They need a new one about every six to ten months.) When I started with M.E. it was "hypoglycemia," then that the over-worked lifestyle we live had knocked down the immune system to create "yuppie flu" cured by expensive cappacinos, then it was all due to improper diet (a perennial), then candidiasis, as well as a number of others I've forgotten, and now perhaps chelation's the thing. HOWEVER, I'm also convinced that the thymerisol (sp.?) (mercury compound preservative) in vaccines is the reason for the epidemic in autism, so each new theory has to be weighed and sifted as it comes along. There might be some diamonds hiding in all that gravel.If I could snap my fingers and get all the "bad" metal out of my body instantly, would the M.E. disappear like a dissipating fog? I don't know. I really hope so, but I'm having my doubts. For instance, I didn't get the slightest bounce--nor a healing crisis of temporary worsening--when they removed my mercury fillings. Is that because the stuff is now at the cellular level? Possibly, but I have no way of really knowing. When I got all the candida out--at least temporarily--there was no real change one way or the other I'm sorry to report.My instinct--again, I could be wrong about this one--is that the candida is a red herring, a false lead. Yet why do people with AIDS who get severe systemic yeast problems because of their lack of immunity present with clearly white-coated tongues? In all the M.E. years, I've never had a white-coated tongue, and don't know anyone with M.E. who has. So where is this yeast? I know you're probably not going to like my pointing up that fact, stillhere, because,temporarily at least, it would seem to only complicate your problems by taking the relatively simple yeast cure off the table. But if the yeast isn't really the problem, then curing it would be a false cause and only waste more of your precious and limited time and resources, right? Of course, to be clear, I'd be completely happy for you if dealing with that and the metal issue made you 100% better. But I'd be remiss if I didn't give you this heads-ups and these considerations from my long and often painful attempts to deal with my illness. I try to keep in mind the model of Edison working to invent the light bulb. A reporter said to him, "Mr. Edison, aren't you disappointed that you've tried five thousand substances and not one of them will work as the filmanent in an incandescent bulb?" "On the contrary," Edison answered, "I now know of at least five thousand substances that won't work as the filament in an incandescent bulb. I'm getting there."Of course, as I said, I could be wrong and candida could still be playing some sort of a role in the whole picture. It might have to be revisited now that it seems you can't get at it if there's a pre-existing problem with metal toxicity. But my instinct at the moment is: no white tongue, no candida.My bigger instinctive take on it all at the moment (and these instincts change change from moment to moment, month to month, etc.) is a bit of a downer, so get a grain of salt ready, everybody. I'm not saying it to be negative but because it's what I really think, or at least strongly suspect. I suspect that, for me anyway, chelation has a high probability of being another one of the "miracle cures" that fall by the wayside, for me anyway. Doesn't mean I'm not going to probably wind up trying it in some form--but not before doing a lot more research, reading, comparing notes. I really really REALLY hope I'm wrong this time. But I've been around this block, or rather blocks like it, so many many times.A former Governor of Massachusetts frequently used to ask the question about various issues, "Does it pass the smell test?" I'm getting some early and kind of faint traces of a not-so-great smell that's leaking from the world of chelation as panacea. One example is that while Ian Solley is technically correct when he says that he doesn't sell any supplements or other products directly, he's tied in to purveyors indirectly through the links in his document. When you can "only" be treated with certain (usually expensive) proprietary products, experience tells me to put one hand on my wallet and the other on my nose and take a good hard look at what someone's trying to sell me. Kick all the tires--twice. Doesn't mean he's necessarily wrong or engaged in any kind of flim-flam. But as an early sign, to me it isn't so good. I'd feel so much better if it could all be done with nonpropreitary products. Also, the chelation doctor I was referred to has a book out (don't want to name names at this point) and it just has that look of "cashing in on the latest medical fad." Again, I do so so so hope I'm wrong. But you know the kind of book--guy's picture on the cover with an expensive haircut and big headlines about how "this new vitamin plan will finally work!" "At last a real cure for the chronic fatigue!" All high gloss. Then there are the infomercials. Etc. etc. etc. And last but not least there's my own experience with amalgam. And so on. All the signs seem to be saying "caution, pal."Still, I'm trying to keep an open mind. Oddly enough, my last name, Wilson, lends itself to the name Wilson's Disease, a rare genetic disorder that happens against almost impossible odds when both parents have the same defective gene at the same site. The result is that the body cannot eliminate copper, of which we take in a tiny trace every day. Normal bodies flush out the excess; these people can't. By the time they hit their thirties enough copper has built up in various places, especially in the liver and in the brain, so that symptoms become manifest. But this disease is so rare that it often goes undiagnosed, or gets diagnosed with the usual "it's all in your head," with terribly damaging and eventually--if it's not caught--results, with people dying young and unnecessarily. It's especially sad because there are actually tiny but visible rings of copper that appear in the cornea--they're called "Kayser-Fleischer" rings--that make the diagnosis easy for anyone who knows what to look for. And guess what the treatment is for this disease? Chelation! Copper chelation and a reduction of copper in the diet. Though I guess this regimen has to be continued over the entire lifetime. Small price to pay. If the disease is caught early enough, there's no damage or it's reduced or minimalized. I've known about this for years, so it would be ironic--what with having a shared name--if chelation happened to be the big answer to exactly what I've been seeking with this illness, exactly what I've been looking for. By the way, and I'm no expert, but as far as I know these people don't get candidiasis.Regarding the epstein-barr issue, all I was trying to say is that the name "Epstein-Barr virus" was dropped by the NIH when no conclusive type of synchronization could be established between an elevated titer (antibody test result for EBV) and symptoms. There were people with highly elevated EBV antibodies who were asymptomatic (in the control group), and there were people who had normal or below normal titers who were very ill. It was at this moment, around 1987 or 1988, that the name "chronic Epstein-Barr virus" got changed to the really horrible and misleading "chronic fatigue syndrome (CFS)." There's the obvious immediate problem of confusion of this specific disease with the symptom of general chronic fatigue, common to so many illnesses. I know all about what happened with this because at the time I was seeing Irena Brus, M.D., a hematologist at Mt. Sinai in New York City who, on the side, out of a private office, was working on what were then leading and hopeful experimental treatments for the disease, which to her great credit she took very seriously. (One of her main theories involved the mitochondria, those honey-dipper looking structures which generate the energy within each cell; they appeared to be depleted and swollen in her patients with this disease and she was looking for ways to restore them.) When the disease was being renamed during a medical conference, Dr. Brus stood at the back of the room and argued strenuously for a more technical-sounding name, a more serious-sounding name, but she couldn't get through. She's female, obviously, kind of diminutive, has a heavy accent, etc., and she felt badly but she just kind of got shut out by the bully boys holding court at the front of the room. The consequences have been negative--no, disastrous--in the extreme, I think, for M.E./CFS patients ever since. The gist of it is that, whatever the results, as I understand it, the EBV test can't tell you one way or the other as to whether EBV is causing your symptoms (unless perhaps you're in the early stages of mono, with other symptoms to help confirm the diagnosis). Elevated titers might indicate that your immune system was actually able to fight off an infection OR that you have an infection. Low or normal titers might be telling you that everything is okay OR that you have a chronic infection and your immune system isn't strong enough (because of the metal toxicity? something else?) to create enough antibodies to fight it off. You see the problem? (As for the CMV test, I don't know anything about that one.) It was enough of a problem to cause the NIH to make an official name change.Anyway, stillhere, it's great that you're not giving blood until all this is sorted out. I also don't know if any metal toxicity can be transferred tnrough blood, or if the metals are already bound up in body fats etc. Also, are you positive about the metal toxicity? How was that determined? (Don't know much about that one either.) Was there a specific incident on the job? Or is this just something you were told in general? (Because I also have the queasy feeling that "metal toxicity" is on the verge of also becoming a fad for everybody, now that it's becoming increasingly clear that the problem with mercury preservatives in vaccines is all too real, and of course it's no fad if you really have it. And perhaps some kinds of metal toxicity do affect all of us, waht with the deterioation in the state of the environment. It's just that I don't know if the people selling stuff off the painted medical wagons and the medical shows have all the answers, or any of them, or if they just want the dollars; and yet there aren't many other places to go because so much of standard orthodox medicine seems to be on the ropes.)Well, to paraphrase Bob Dylan, "I haven't known real life for so long I can't remember what it's like." Sorry you found it only to lose it again. Has me kind of hoping I can manage to avoid it for the duration. It's worse to be given a few new hopes and have them dashed than if they hadn't appeared in the first place. (For some odd reason when I was put on cardiac meds I quickly went up to a better level; still sick but more functional. Then, as quickly as it came, it kind of just left, leaving me in more disarray than if it hadn't happened at all.) So that's my point about the new--for me anyway--ideas about using chelation for whatever it is I've got. Treatment or cure. Yet although it kind of depresses me now to find out that it's giving off some questionable vibes, what would be CRUSHING would be to go through a whole strenuous program for a year and have it come up empty. Been there done that I don't know how many times. So I truly am really sorry if my doubts contribute in any way to your less than happy feelings, but my own feeling is that I'd always rather get bad news up front, when it allows me to avoid even further problems that would lead to bigger unhappy feelings. I'm not big-time depressed but there's a streak of small-time depression in there, and I'm kind of chastened and hurt that some of the gleam seems to have been lost from the hope for a chelation treatment, at least as it applies to me at the moment. Of course, your picture could be altogether different, stillhere. And everyone. And even if it isn't, never never never give up. Even if the perfect cure or treatment doesn't show up, I intend to keep living to the best of my abilities and even disabilities.Wishing you all happy trails,gijoe88


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And sorry if some of the speling and stuf is still incorret. I need time to eat 'n allBest!still there, still hauling up the mountain,gijoe88


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