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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Andrew Cutler and Alpha Lipoic Acid

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Aug 17, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    I snagged this section of this post from dannybex's personal history post. Cutler and his treatment procedure is very interesting. Personally I'm terrified of taking alpha lipoic acid or any chelating type agent every couple of hours. For one thing I've never been to tolerate any medication past a week or so. What if I have to stop with all this mercury floating around my system?

    But Cutler has been around a long time now - which says something - and I know Mercury is a problem for me. I have his book somewhere - repetitive as I remember, poorly formatted, something of a mess but dense with info.

    Does anyone have any experience with him?

  2. Tony

    Tony Still working on it all..

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    This from Martin Pall's site is interesting too, saying much the same.

    http://thetenthparadigm.org/arg.htm

    "There appears to be one group of individuals who respond very negatively to several of the capsules in this protocol. These are patients who have a high level of mercury stored in their bodies. They apparently react negatively because the alpha-lipoic acid mobilized stored mercury, allowing it to produce increased impact on areas the the body including the brain. Unfortunately, when we formulated this protocol, we placed alpha lipoic acid in four of the different capsules. Clearly those suffering from high levels of mercury in their bodies will have to undergo thorough mercury detoxification before they can take this or similar protocols. Mercury can up-regulate the NO/ONOO- cycle because its methyl mercury metabolite can increased NMDA activity."
  3. JanisB

    JanisB Senior Member

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    I haven't had to nerve YET to try the Cutler ALA protocol (and hopefully I'll get in to see Mike's neural therapy Doc and won't have to try it :D) but I did have some e-mail exchanges with him after reading his book and analyzing my hair mineral analyses back to 1994 in Drunk on Mercury[/I] He's a brilliant chemist, but seems a little close-minded, and from what I've heard, denies that anyone can have problems with his chelation approach, although many sensitive individuals claim to have them. I sent him the citation to a research article published in a peer reviewed journal about the ability of glutathione to chelate heavy metals, and he poo-poohed it; similarly, he denies that Amy Yasko gets any detox with her methylation protocol, despite the many posted success stories and hundreds of toxic urine analysis she has run on autistic kids.

    I don't get it. He has so much to offer from his experience and understanding of chemistry. Why not try to understand how and why other approaches might work for other individuals? Don't we want to get past the cookie-cutter approach so that we can tailor treatments to those individuals most likely to get successful results and prevent serious complications in those most likely to have them?

    Janis
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    ALA, Glutathione & Mercury

    Hi,

    I have experimented with taking small doses of R Lipoic Acid, which, I believe, is the more potent form of ALA. I did take it every few hours in low dose. This was a pain though as it comes in high dose capsules and I had to divide them and remember to take them. I haven't done it for a while.

    Following are excerpts from a very interesting article on ALA, Glutathione and other agents' ability to mobilize mercury and move it--either out of the body or to someplace worse--like the brain! This seems to be an area where you need to do your homework and observe caution.

    Mercury Toxicity and Antioxidants: Part I: Role of Glutathione and alpha-Lipoic Acid in the Treatment of Mercury Toxicity
    Lyn Patrick, ND

    Alternative Medicine Review ◆ Volume 7, Number 6 ◆ 2002


    First, glutathione, binding with methylmercury, forms a complex that prevents mercury from binding to cellular proteins and causing damage to both enzymes and tissue.30...Second, glutathione-mercury complexes
    have been found in the liver, kidney, and brain, and appear to be the primary form in which mercury is transported and eliminated from the body.24
    *************
    The fact that free ALA crosses the bloodbrain barrier is significant because the brain readily accumulates lead and mercury, where these metals are stored intracellularly in glial tissue.36,45
    **************
    Levels of released inorganic mercury remained at a 300-700 percent elevation, even three hours after dosing with ALA.
    ***************
    There was disconcerting evidence from this study, however, that ALA may also alter the tissue distribution of mercury and other heavy metals. Although levels of inorganic mercury and methylmercury in the kidney dropped significantly, levels of inorganic mercury also increased significantly in the brain, lung, heart, and liver tissue. Methylmercury levels had also increased in the brain, intestine and muscle of the rats given ALA.
  5. dannybex

    dannybex Senior Member

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    Just a quick post for now...

    ...as I've been online too long and am about to droop.

    I concur with what many of you have said. From what I've read he's definitely opinionated (sp?) and perhaps could be seen as inflexible regarding other's treatment protocols.

    I did meet with a practioner who consults with him and even she said he's incredibly intelligent, but like all of us, doesn't know everything. :)

    I think the key here is his insistance that ALA be taken frequently enough so that if it's moved from the brain, or temporarily increased in the brain, that the ALA is then is in the blood stream long enough, with no dips, so that it's carried out of the body as much as possible per round. Whereas other protocols say you can take it (or some of the other chelators) twice a day and you'll be fine. I think that's his key beef, that that type of infrequent dosing may be very dangerous.

    ???

    d.
  6. Cort

    Cort Phoenix Rising Founder

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    He and I went at it a couple of years ago. I'd always been struck by his certainty on different issues. Then he picked an issue that I did know something about - RNase L - and emphatically said it has nothing to do with Mercury or something like that.

    I was incensed because I'd read the RNase L literature and knew that nobody had examined it with regard to mercury. So how could he know? We were both really snarling at each other...but when I looked deeper I was able to find several references that suggested it could play a role in mercury detoxification - and he just melted away - no apologies, no nothing..... just disappears. It's not a meaningful incident really - what matters is if his protocol works - but he is like that I suppose.

    I don't understand how taking so much ALA won't just keep distributing it in your tissues somewhere. You take some - it flushes some Mercury out, you take some more it flushes more out - at some point you've got to have so much Mercury fully around in your bloodstream or urine or wherever it is - doesn't it have to settle somewhere? Or does the next dose of ALA just push it out again?

    I know Dr. Rea uses fiber, cold pressed vegetable oil, taurine and probably some other substances to mop up toxins released during Sauna and help the detoxification process. There's got to be ways to mop up or bind to that Mercury - what does he suggest I wonder?
  7. dannybex

    dannybex Senior Member

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    Good questions...

    I don't understand that either Cort, so I just posted the question over on the 'frequent dose chelation board'. Perhaps I'll get an answer by tomorrow...

    I would think too that it does have to settle somewhere, but perhaps by doing the frequent dosing for a few days keeps it moving out of the body during that time (which presumably is safer than a dose every 8 or 12 hours), but then like you suggest, what happens when that 3-day round of chelation ends? I know that some people in the group also use DMSA, and I may have read that taking that at the end of the ALA rounds helps to eliminate the merc from the body more easily, but that's a foggy-brained guess.

    I'll let you all know what I hear ASAP.
  8. kolowesi

    kolowesi Senior Member

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    rounding up the mercury herd

    Thanks for this great thread. This is an ongoing issue for me.

    I'm pretty sure I have a lymphocyte reaction to loose mercury from going through DMPS chelation pushes and EDTA chelation orally when I still had an amalgam under a nickel crown (didn't realize). Someday I will get the Melisa test and find out.

    Can't find it now, but there was a mention that Dr. de Meirleir found mercury to be as much as 100 times more damaging to surrounding tissues in the presence of LMW RNase-L. I don't think there was a paper, it was mentioned in a talk. One can have the cleaved RNase from mycoplasma, maybe viruses, maybe mold toxins.

    Also, Dr. Cheney mentioned the possibility of Fenton chemistry when the SOD and catalase paths (which take the highly reactive products from ATP production down to a safer level) were not working well and a person was low on glutathione peroxidase.

    I tried to understand this, but ended up just taking his word that it's theoretically possible to have a bad result when there are heavy metals around and one is low on the antioxidant enzymes.

    My own observations are that chelators get me into trouble, even homeopathic ones. I have a couple of genetic factors that affect detox, SNPs:

    {Absent GSTM1 1p13.3
    -/- GSTP1 l105V
    Health implications: Glutathione S-transferases (GST) are responsible for detoxifying certain products of oxidative stress and a variety of electrophilic xenobiotics and carcinogens such as solvents, herbicides, pesticides, polycyclic aromatic hydrocarbons, steroids, and heavy metals. GSTM1 is located primarily in the liver, whereas GSTP1 is located primarily in the brain and lungs.}

    I also have an SNP on the SOD2 enzyme, which makes a person more vulnerable to oxidative stress, but might also increase the chance of the Fenton chemistry reaction.

    On the PH board, there were some posts by Marti about double thiol bonds. From memory: many chelating substances make only a single bond, which means they can easily drop the mercury once they pick it up. I've read more than one place that DMSA is the safer chelator that makes a double bond. Hal Huggins warns to use a very low dose of it, "low and slow."

    We can help the process by gathering up whatever reaches the colon to keep it from being reabsorbed. I take Jarrow Heavy Metal Detox for this. I just take it once a day as I have so many things that have to be taken alone.

    I am pretty sure that the infections in my tissues are related to the heavy metals in my tissues. If one can afford vitamin C IV's, that is a gentle approach.

    The FIR sauna is supposed to work as well, but for both of these, I am guessing it would be good to take something to carry it out of the colon. Cholestyramine, charcoal, or the modified citrus pectin/sodium alginate combo.

    When I get a certain kind of headache that won't respond to an air filter or homeopathics for airborne allergies, I often get it to go away with green juice: parsley, cucumber, celery, kale and carrot. Headaches can be from toxins in the colon, so my guess is that somehow the juice is neutralizing something bad.

    Cilantro is supposed to grab mercury, but it is one of the single-thiol bond substances, so I don't use it often.

    I know this is probably confusing, because I am confused myself. Thanks for listening.

    Kelly
  9. dannybex

    dannybex Senior Member

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    Okay...here's the answer from the other board...

    I asked...

    "After one does 3 days of chelation -- I'll be starting the ALA every three hours for 3 days, 2 nights -- if it's critical to keep taking alpha lipoic acid every 3 hours to prevent the mercury from moving say from the brain to the spine, or the heart, then where does it go after the 3 day period ends?"

    Here's the reply:

    "While you are taking frequent doses during the round, the chelated mercury is excreted. After the last dose, a small amount is dropped and redistributed. This leads to some tolerable symptoms on the day after the round.

    Unlike other protocols, in which a large amount of redistribution occurs after every dose, Andy's protocol results in a small amount of redistribution at the
    end of the round only. Your body has the ability to heal this amount of damage.

    The bad protocols cause so much damage repeatedly throughout the round that the body cannot heal."

    (By "bad" or "other protocols", I believe she's talking about IV chelation or DMSA and others where the chelator is taken only once or twice a day, but not certain on that.)

    Then I asked:

    "And is there anything one can do after the final dose to eliminate as much
    mercury/ala as possible...like take activated charcoal?"

    The reply:

    "The most important thing is to find the right dose. That would be the dose that leads to tolerable symptoms during the round and for a day or so after the round. By finding the right dose, you are trying to limit redistribution to an amount that your body can handle." (and some start with a really low dose...12.5 mgs instead of 50mgs)

    And someone else added that it's important to drink more "water and keep your bowels moving! (ALA increases both urinary and fecal excretion of mercury)

    Hope this is helpful.

    Dan
  10. Cort

    Cort Phoenix Rising Founder

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    Dan,

    Very helpful. For some reason I thought the ALA treatment was ongoing; glad its only for three days. I would think that anything that needs excretion would be good - lots of water, enema's and charcoal binding - can't hurt anyway.

    This was excellent advice

    It's definitely more of an option for me now.

    I had a Gold Crown over amalgam filling. The crown finally broke - as he lifted it off a wave of relaxation spread over my body. I certainly wasn't cured but it sure helped to get it off of there.
  11. dannybex

    dannybex Senior Member

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    Clarification...

    I should clarify. Each round of ALA treatment is three days (or actually 3 days and 2 nights), but then you wait a week, and do another round, until you gradually feel better and better (so they say...)

    The reason for the week off is so that you don't have to get up twice a night every night, although some people can handle that, and just take it every day for a considerable period of time, until they notice a definite difference.

    How long one chelates depends on how long it takes to notice an improvement. Some parents have reported chelating their autistic kids for years(!), but apparently it was worth it.

    I'm going to try taking the plunge and try it starting this weekend...I think. Come on...talk me into it! :)

    d.

    p.s. very interesting about your crown...I'm so overdue for dental work it's scary, but can't afford it now, and one doc told me she thought it would cause a huge setback if I did it now.

    The last time I had x-rays they said I needed 3 crowns. If you had yours removed, what did they replace it with?
  12. klutzo

    klutzo Senior Member

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    ALA veteran here

    Hi all,
    What kind of dosages are we talking about when it comes to ALA?

    What kind of scary brain symptoms are we talking about?

    I did not know zip about any of these dangers until I read this thread! I have been taking a multivitamin and mineral complex 6 days per week for almost a year that contains 300 mgs. ALA. Before that I was taking one that had 550 mgs. of ALA for almost ten years! I take 2/3 dose with breakfast and 1/3 dose with lunch, so I don't get over-energized by the B vitamins in the formula late in the day.

    I was glad the ALA was in there, having been told long ago by several people that I should stop taking NAC because it would move mercury into my brain, but they assured me that ALA would not! ALA also has some proven blood sugar regulatory abilities and I have been flirting with prediabetes for quite awhile and hoped it would help. So far so good.

    Both hair testing and 3 day urine challenge testing showed normal mercury levels. All metals were within normal range except zirconium. I do have 3 amalgams and 3 crowns and can't possibly afford to remove them. I did know enough to turn down a root canal with my compromised immunity, which is why I have two of the crowns.....you can't win!

    I just wonder if we are talking megadoses of ALA here with regards to this damage, and if what I am taking is considered a small or large dose, and also what the symptoms of damage from this would be and how to distinguish them from the usual brain symptoms of late stage Lyme. (I am in stage IV).

    You all have got me really nervous now! Any info appreciated.

    Thanks,
    klutzo
  13. JanisB

    JanisB Senior Member

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    Cutlers protocol is ongoing, in a sense. One does 3 days of every 4 hours, waking up at night. Then one stops for a certain number of days (I don't remember anymore) and then starts up again with another dose of 3 days. The process goes on and on until there are no symptoms from stopping and a hair analysis comes out normal.

    The danger of ALA, according to Rich Van Konynenberg, and which is problematic on the Tenth Paradigm protocol per Marty Pall, is that ALA releases mercury stored in the brain. The nervous system is very sensitive to free-floating mercury and easily re-injured. Rich has expressed concern that for people with ME-CFS, who have low glutathione (most of us), an essential antioxidant to protect cells from damage, and whose methylation cycles are not working optimally, the release of mercury from the brain could do damage that the body could not repair in a few days.

    Neither Cutler nor VanK's position has been tested with PWCs. Cutler has helped many individuals, but others have been unsuccessfully or hurt trying his protocol, perhaps because their release of mercury taxed their body's poor detoxification system. Another problem is that PWCs have high oxidative stress (e.g. lots of oxygen radicals damaging cell membranes, mitochondria, etc) and that mercury creates lots more oxidative stress. Since the PWCs body can't repair the daily oxidative stress from aerobic activities like exericise, talking, making dinner (Ha), increasing oxidative stress with ALA could be detrimental to long term health.

    I took ALA for years with no harmful effects, but I never seem to have had a high Hg level. I could also take chlorella and similar chelators without side effects.

    Janis
  14. brenda

    brenda Senior Member

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    I was on the Cutler forum for a while and bought his book. The company that sponsors the site sells a product that mops up the mercury.

    There were number of people on the board who were made worse through ALA, or at least had not been helped. I thought those ones may have had Lyme. One poor chap was on the point of insanity with the chelating. Cutler did not seem to have an answer for him.
  15. dannybex

    dannybex Senior Member

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    Good points Janis...

    Hi Janis,

    You make some very good points. Yes, ALA does release stored mercury from the brain -- that's precisely why it's used as part of Cutler's protocol. According to his research and studies, ALA is the only way to remove merc and other heavy metals from the brain, because it's the only chelator that crosses the blood brain barrier. Not sure if this is true however...

    Anyway, that's why he insists it be taken every three hours (for 2-3 days) because doing so will lessen the damage that could possibly be caused by taking it once a day. In other words, if one keeps a constant level of ALA in the bloodstream for a few days, then the heavy metals will be prevented or minimized from moving into the brain, or back into the brain, or other organs -- and will be carried out of the body -- until the very last dose of the round -- minimizing the risks.

    And he also recommends vitamin C and other antioxidants (and b-vitamins) be taken during chelation to help protect from excessive oxidation.

    He mentions the methylation and sulfation issues that Rich talks about, and discusses various ways to possibly correct these, if they are a problem. Having said that, his book is 10 years old now, so perhaps some updating is in order (and I think I heard that he is working on a new edition with a co-author...)

    But please don't anyone quote me...this is just my understanding of his protocol without looking at my notes.

    I would respectfully disagree that his protocol hasn't been tested with PWC's. He himself had CFS, and his wife had fibromyalgia, and both recovered using ALA alone. (He sometimes also recommends DMSA.) Plus there are scores of others, along with kids with autism -- on the yahoo dental chelation groups, and frequent-dose chelation groups that have recovered -- and yes, others that have had serious problems. As with Rich's protocol, it's difficult to analyze this because it's hard to know for certain exactly what specific conditions existed prior to starting chelation. I've seen many posts where they've ignored critical information, or started chelating too soon after having their almalgams removed, and suffered serious consequences.

    And the same with Rich...at least according to his latest published paper. He's had many people improving on his "Simplified Protocol", as well as some doing worse. Testing is the key of course...and most of use unfortunately cannot afford many of the tests required.

    Anyway, just my two cents. :)
  16. dannybex

    dannybex Senior Member

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    Hi Klutzo

    Hi Klutzo,

    I would check out this page:

    http://home.earthlink.net/~moriam/ANDY_INDEX.html

    It has links to many of his posts from years ago, that might address some of your questions. I'm 99% certain that he would (and others too) would say to stop the ALA until you can get your almalgams removed. I can totally relate to not being able to afford to do it. I had mine out 20 years ago, when I had money, but before they knew too much about chelation, and it was expensive way back then! Dentists make doctor's fees seem reasonable... :(

    But when or if you do reconsider a chelation protocol, he does say to start at a very low dose -- some people start at 7.5 mgs, others at 25, it all depends.

    Regarding the hair tests -- there's only one lab he recommends -- the Doctor's Data Hair Elements Test. According to Cutler, one can have low mercury -- in fact if the other main minerals are all out of whack, but mercury is low on the hair test, that suggests the merc is screwing up the other minerals, and the body is holding on to the mercury. But he bases that on the results from a DD lab test, not other labs.

    Hope this helps,

    d.
  17. SaraM

    SaraM Senior Member

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    Ala

    I have taken ALA twice and admit it is one of the best supplements I have ever tried .My doctor said there has never been a bad report on ALA accumulating mercury in the brain . But I did not listen to her since I have some amalgam fillings . I wish there were less contradiction when it comes to the safe use of ALA.
  18. klutzo

    klutzo Senior Member

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    Ala

    Hi Janis -
    Just a quickie to tell you that I have severe (stage IV) Lyme Disease and have been taking ALA for years...see my post above. I don't know if it's damaged me or not, but I am still alive after 24 years with untreated Lyme, and I am still walking, even exercising a little. Don't get me wrong, I am NOT doing well at all and don't expect to live more than another year or two, but compared to the people I know who've had it this long and are getting proper treatment, ie. antibiotics, I am doing as well or better.

    - - - - - - - - - - --


    Hi Dannybex -
    Thank you, I will look at the link you gave me. I already had documented brain damage before I started taking ALA, both from a head trauma and my Lyme Disease, so I sure don't need more.
    The Doctor's Data hair test was the one I had and all metals were low. All metals were low in my 3 day chelation challenge test as well, except zirconium (the one in deodorant).
    This will put me in a bind, as it is very hard to find a well made multivitamin these days that does not have ALA in it. I use the brand that has won the award for having the best multis on the market (NSI) and have been very happy with them. OH well, gotta keep learning!

    klutzo

    P.S. Oh dear! Just read a few things at that link. It seems he thinks chlorella is evil too and I've taken lots of it for years. I love the stuff, almost as much as I love spirulina, and take them in my whey protein shakes, combined in a powder called Greens First. Since I'm incurable now anyway, I'm not sure I'm going to make such major changes on the word of one person, but I will read some more and stay open minded. I'm just trying to stay functional as long as possible so as not to be a burden to my husband.
  19. JanisB

    JanisB Senior Member

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    Hi Klutzo,
    I've taken ALA too, and tons of chlorella. I never had any problems. I'm glad both have helped you.

    I just want to put in context the comments about the potential dangers of ALA. Most people get benefits. But for those who don't, or who get negative reactions, it's important to know that some people do have problems.

    Too often, those of us who've been sick forever with multifactorial illnesses tend to attribute everything to detox when in fact, some things can actually be harming us.

    Hang in there. I hope you can stay alive until some kind of cure is found. Lyme and ME-CFS are both awful to live with. We want you to join the ranks of the recovering PWC's
  20. aquariusgirl

    aquariusgirl Senior Member

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    Most people get benefits.

    Look, I hate to nitpick, but how can you say this with any confidence? Where's the evidence?

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