Could amalgam fillings/ mercury toxicity be contributing to CFS/ME???

Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Jul 15, 2012.

  1. I had heard this a while back, but more recently saw a youtube video from a segment 60 Minutes did years ago (around 1990) but it caused such controversy in the dental community that it was never aired again. It is quite compelling and logical since mercury is a known neurotoxin. There have been cases where people had MS or other neuroimmune disorders and they significantly improved when they had their amalgam fillings replaced. I was tested years ago for heavy metal toxicity and my mercury levels were literally off the charts! I'm just not a candidate for chelation because of my severe chemical sensitivities. Any thoughts on this?
  2. TigerLilea

    TigerLilea Active Member

    Several years ago I found by accident a web-site for people with CFS who had their amalgam fillings removed. The consensus was that they didn't feel any better after having their fillings removed and replaced with non-amalgam fillings. Even mercury testing is very controversial if not done in a hospital setting. The provoked testing that is commonly done is always going to give a high reading. If you took 10,000 people and did provoked testing, all 10,000 people would test positive for mercury poisoning. Less than 1% of those 10,000 people would actually have true mercury poisoning.
  3. mbofov

    mbofov Active Member

    Mercury toxicity could be the cause of your severe chemical sensitivities and very well could be contributing to CFS/ME.

    I had my amalgam fillings removed some 14 years ago and felt no different afterwards. However, I've had trouble with detoxing for many years - many supplements which are supposed to help detox heavy metals actually make me sick, like chlorella - I believe it causes too much mercury or other toxins to be released into my system. I reacted very strongly to a far infrared sauna, again felt severe detox symptoms. Cayenne and apple cider vinegar, all things that can "cleanse", all caused a rather strong detox reaction for me.

    So even if someone had their fillings removed, mercury can still be stored in the tissues (including brain) of the body.

    I'm currently doing a mercury detox under the supervision of my doctor, although it's been temporarily interrupted due to sewage backup in home which is being repaired but I cannot do anything else until my house is put back together, which hopefully will be finalized in about two weeks.

    I recommend you look up Andrew Cutler - I ordered his book "Amalgam Illness Diagnosis and Treatment" which has a ton of information. He recommends hair testing done by a certain lab (he gives the details in the book and you can find this info on-line as well), and tells how to interpret the results.

    I don't know if your MCS would prevent you from chelating. However, Cutler strongly states you should not do chelation unless all of your fillings have been removed. But my doctor said being realistic, not everyone can get their fillings removed and that he has had people do chelation with amalgam fillings still in place. I can't say whether it is good or not to do chelation while you still have fillings - you have to do your own research.

    I was able to do a couple of rounds of dmsa chelation before my house backup, and was most surprised by the way it affected my brain - made me spacey, difficult to concentrate and so on, and mercury is known to lodge in the brain. A "round" is roughly 4 days on and 3 days off. But again, do as much reading as you can and also there's a yahoo group of people who are doing Cutler's protocol which has a lot of information.

    Cutler does not recommend the challenge testing mentioend by Tigerlilea, says it is too harsh on the body and I never had one done. I'm doing the chelation based on years of toxicity and also the hair analysis.

    Also, someone named Vega on the Phoenix Rising board said she had some improvement doing the methylation protocol, but was not able to overcome post-exertional malaise until she did about 4 months of chelating for mercury. And PEM is my chief complaint.

    So I don't think the fact that you have MCS means you can't chelate, when in fact mercury may be the cause of the MCS. If you go to Yahoo Groups and look up "frequent dose chelation", you can get answers from people who are doing Cutler's protocol.

    Good luck -

  4. Mary and tigerlilea, thanks so much for the feedback.

    Mary, I will def look at that site and book as I am trying to decide what to do. I've looked into getting my amalgams replaced but in order to get it done by a dentist who is board certified to do the removals safely, without poisoning the patient with all the mercury dust in the process (whether breathing it in or swallowing some), I will have to travel a far distance and its also all out of pocket costs that isn't cheap (like everything else I've done over the years in the pursuit of health!). If it was just one visit, that would be difficult enough, but it would take multiple visits since they can only deal with one quadrant at a time. But I will try this if there's any hope that my health will improve!

    Also, tried chelation one time and my body's reaction was so severely bad that I never tried it again. They even cut the amount of chemicals in half when they administered it because they knew how sensitive I was.... would hate to see what would have happened if they had given me the full dose! Wish I could find out definitively if the foot detox is legitimate and actually works. I've tried it just once but then heard that it wasn't doing what it claims to do. Do you know anything about "foot detox"?
  5. mbofov

    mbofov Active Member

    There are different chelating agents. I don't know which one you had administered - was it injected? or how was it administered? I think some are rougher, and some are better tolerated than others. Also, dosage is very important. So you need to know what you were given and how much. Again, if you read Cutler's book, you'll see he recommends some chelating agents and discourages use of others. We're pretty much on our own here, but I like what he has written. Also, my doctor is pretty much following Cutler's protocol.

    If you read about Andy Cutler's protocol on the yahoo board, I think most of the people there are using dmsa. It's what I used, and you can adjust the dose to what is tolerable. I was taking 25 mg. five times a day, about one capsule every five hours (although he recommended every 4 hours). I use Vitamin Research Products brand, you can find it on-line, but there are other brands too. No one administers it to you - you take it yourself and Cutler is very specific about timing especially. Many people start with a lower dose than he recommends - you have to find out what you can tolerate. But he strongly recommends you get the hair analysis done (you'll find all the info on the site and in his book) so you can know what you're dealing with.

    Yeah, it's too bad, but it is all out of pocket to get the amalgams removed. Anything that really helps me is almost always out of pocket. Regular medicine has been helpless when it comes to dealing with CFS, except for testing my thyroid.

    I've read good and bad things about the foot detox. One theory that sort of made sense was that the change in water color wasn't due to toxins being pulled out, it was some other chemical reaction. However, the theory was that the foot bath stimulated your body to detox on its own somehow. I tried it once, and had a very strong reaction (like everything else for detoxing!), wiped me out for about 3 days. I believe it did cause my body to detox. It was too much for me. I do tolerate the dmsa better. But we're all different.

    I wish there was a simple easy way to do all this but I don't know of any. Molybdenum can help with detoxing. One other thing I discovered when taking the dmsa was that it increased my need for either B12 or folate, I'm not sure which, although I think it was folate - I was left extra tired and had loss of appetite which came back after increasing the metafolin I take (Solgar brand).

    Also, have you looked into the methylation protocol? You'll find lots of info about it on the board here. I think it may be an important adjunct to detoxing. But many people have to start with very small doses of the methylation supplements. Prohealth sells the supplements recommended by Richvank on this board, which many people take. I found I did better following a protocol by someone named Freddd on the Phoenix Rising board (see

    Actually, there's a thread going on right now about doing a B12 protocol vs. Cutler's detoxing. It has some good information:
    Someone asks about whether to do the methylation protocol first, or try chelating first, and there is no easy answer. You can see what Richvank has to say about it there. The methylation (or B12) protocol can help with detoxing but if heavy metals are too high, then you have to detox first. grrrrr!

    I know this is a lot of information, but hope it helps.

    Best wishes,

  6. Thanks for all the great info... my head is spinning a bit though! I have trouble processing things now because of this DD! But I can't thank you enough! When I tried chelating, it was by I.V.... don't remember which chemicals were used. It was by a doctor who is 3 hours away and he mainly recommended I eat mostly alkaline foods and get a special peptide shot once a month that comes from a research lab in France. It's suppose to "reset" my immune system as a way of treating the CFIDS. Not sure if its doing anything (and of course, its not cheap! What else is new, right?).... wonder if anyone has heard of this peptide injection or tried it. He also calls it "designer amino acids".... ever heard of it? I may post this question to see if I can get some feedback. But I will try to read up on the info you've given. It may take some time though because my symptoms have been flaring and even reading takes too much out of me lately. Thanks again for all the info, Mary! You are so blessed to have a doctor who is willing to work with these protocols. So far, I haven't found a doc in my town who even understands this DD... Still hoping though, Shel
  7. mbofov

    mbofov Active Member

    If you do a search on this board for "peptides" you will find several posts. Mikie in particular has had very good results with peptide injections from Europe (I believe she's in Florida). And yes, they're not cheap - around $300 a pop. I actually tried one injection with my L.A. doctor and it did nothing for me and we then decided to go with the heavy metal detox (which has now been postponed for about 2 months due to personal matters)

    I am very fortunate to have a doctor who knows about these things, although he is 1-1/2 to 2-1/2 hours away, depending on traffic (Los Angeles). Where I live there is no one.

    Do a search for peptide injections and check out Mikie's posts - she's done several, and she did have good results. (although I didn't)

    And if you do decide to seriously pursue a mercury detox, I strongly recommend getting Andy Cutler's book and looking up the yahoo frequent dose chelation group - you'll get a ton of good information.

    I'm hoping to restart the detox around the beginning of August - ah bliss! what a way to spend your summer :)

    Best wishes,

  8. You are such a wonderful source of info! What a blessing you are!

    I will do the search on peptides so I can see what others think of it's value. Its just so hard to know WHAT is working and what's not, since there are so many variables (uugggh!). But with God's help, I'll get it all sorted out.

    I would hate to add up the cost of ALL the things I've tried over the years in an attempt to get better.... thousands upon thousands of dollars! (I'm sure that's not a unique story here)... so I hate to waste the $300 a month if it's not really helping. Just not sure... But I will try to find Mikie's post on the peptide injections. And I will check out Andy Cutler's book.

    Wish I had a doctor even 2 hours away that could help me with all this! So far, no luck finding a doc even remotely nearby who has knowledge of this DD!

    Good luck with the detoxing in August! Hope you get good results! Keep me posted!

    Take care and God bless,