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ME/CFS and the Magic of the Canine Factor
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Given Dr Lerner and Montoyas findings, why arent a subset of us getting treated now?

Discussion in 'Latest ME/CFS Research' started by snowathlete, Nov 3, 2011.

  1. richvank

    richvank Senior Member

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    Hi, Hip.

    Maybe you have assumed that Lyme disease would be ruled out in the initial diagnosis, but I would just like to note that historically this has not been done very well, because the testing for Lyme disease has missed a lot of cases. As a result, there have been many people who were diagnosed with ME/CFS who actually had Lyme (or perhaps had both). Because they didn't know they had Lyme disease, it went untreated for many years in some cases, and this has had some unfortunate effects.

    There is a new culture-type test for Lyme disease now, and hopefully it will catch more of the cases. But for those who have not had this testing, which hopefully will be more reliable, I think that testing for Lyme disease would be a wise thing to do early in the testing. I have personally been fooled too many times over the past few years by not suspecting Lyme disease strongly enough to press the issue in cases I have studied, when the existing tests came out negative, and I would not like to see that happen to many more people.

    Best regards,

    Rich
  2. Tristen

    Tristen Senior Member

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    Does IgenX have this new culture test?
  3. richvank

    richvank Senior Member

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    Hi, Tristen.

    I think it's offered only by Advanced Laboratory Services: http://advanced-lab.com/spirochete.php

    Best regards,

    Rich
  4. Tristen

    Tristen Senior Member

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  5. Hip

    Hip Senior Member

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    Thanks Rich. I have just amended the roadmap to include a new "Ruling Out Other Conditions" section, and have put Lyme into a box in this section.

    ME/CFS Roadmap For Testing And Treatment

    If anyone has any useful tips or gems of knowledge regarding Lyme testing that I can add into the Lyme box, or some other good Lyme tests and testing labs, please let me know. I am not so familiar with the subtleties of Lyme testing.

    (Actually, if anyone has any useful tips or gems of knowledge regarding ANY of the tests in the roadmap, please let me know. The idea is to distill everyone's combine wisdom to make this roadmap).

    Also, if anyone has other suggestions for what should go in this new Ruling Out Other Conditions section, please speak up. There will not be room for all the possible similar conditions to ME/CFS, as there are lots of them. But we should include the most important ones.

    Other causes for ME/CFS-like symptoms:
    http://chronicfatigue.stanford.edu/overview/diagnosis.html
    http://www.drmyhill.co.uk/wiki/CFS_-_can_be_caused_by_chronic_infection
    http://forums.phoenixrising.me/showthread.php?11641-Diseases-similar-to-CFS-ME&
  6. richvank

    richvank Senior Member

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    Hi, Hip.

    Thanks for incorporating Lyme disease testing in the Roadmap. I think it will pay off for a lot of people.

    I would like to suggest one more thing: toxic metals testing. Toxic metals, such as mercury, are another factor that is pretty widespread in people who have ME/CFS. I think it can be both a cause and an effect of the onset of ME/CFS. Our experience with the methylation treatment has shown that recovery is held up if the person has a high body burden of toxic metals. In such cases, specific chelation-type treatment may be necessary, because the metals can block enzymes that are necessary to restore the normal operation of the detoxication system. So I think it is important to test for this problem and deal with it specifically if it is found.

    This is another issue for which the testing is not so straightforward. It is possible to order tests for toxic metals in blood (whole blood or red blood cells), urine, feces and hair. Blood testing for mercury will indicate whether there is a recent or ongoing exposure, but will not detect an exposure in the past that has produced an elevated body burden, because mercury stays in the blood only for several weeks. Only about 5% of mercury is excreted in the hair on the average, and some people are non-excretors in the hair. I'm not sure what to suggest for toxic metals testing, but maybe others who have experience will comment.

    Best regards,

    Rich
  7. Hip

    Hip Senior Member

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    HI Rich

    I actually had toxic metals testing in the roadmap initially, but I couldn't really find any references to toxic metals being higher in ME/CFS patients, nor any references (or even just good anecdotes) to ME/CFS patients who detoxified themselves (or reduced their exposure to toxic metals) and then saw improvement in symptoms. So I removed the toxic metals testing section for the moment; but it can be reinstated.

    If you have any good refs to toxic metals in ME/CFS, I'd be very interested. I thought it would be a good idea to keep the roadmap reasonably evidenced based (even if in some cases the evidence is just good anecdotal accounts like for example the jaw bone infection accounts).

    However, I did find some studies showing that mercury could worsen enterovirus/Coxsackie B virus myocarditis. Mercury seems to make coxsackievirus B myocarditis infections more severe:

    Low-dose inorganic mercury increases severity and frequency of chronic coxsackievirus-induced autoimmune myocarditis in mice

    And of course, mercury depletes glutathione, which may cause a shift to the undesirable Th2 response in ME/CFS patients.


    Aluminum can induce Th1 or Th2 immune responses (aluminum is used as a vaccine adjuvant for its immune stimulation), so higher levels of aluminum might have some role in ME/CFS (ref: here).

    I believe aluminum in the brain also blocks the enzyme glutamine synthetase, an enzyme which converts glutamate into glutamine. (I wonder whether excess glutamate from microglia activation will not be cleared as well if glutamine synthetase is blocked, leading to excitotoxicity activation of NMDA receptors).

    Then there is the ?bromyalgia-like disease macrophagic myofasciitis, which is most likely caused by aluminum as a vaccine adjuvant.

    Lessons from macrophagic myofasciitis: towards definition of a vaccine adjuvant-related syndrome
  8. richvank

    richvank Senior Member

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    Hi, Hip.

    I'm not aware of any published, peer-reviewed studies of toxic metals in ME/CFS, but there is abundant anecdotal experience. When I wrote my 2004 poster paper on glutathione in CFS, here is what I wrote, and the secondary level of references that I had to use, in lieu of published studies:

    SINCE GLUTATHIONE NORMALLY REMOVES MERCURY FROM THE BODY, ITS DEPLETION CAN BE EXPECTED TO ALLOW BUILDUP OF MERCURY IN CFS PATIENTS. IS THIS OBSERVED?

    YES. While there are no published controlled studies of mercury level testing in CFS patients, several clinicians who specialize in treating CFS have reported that many of their patients have high mercury levels:

    Ali [77]
    Godfrey [78]
    Conley [79]
    Poesnecker [80]
    Teitelbaum [81]
    Corsello [82]
    Goldberg [83]

    In addition, immune testing has shown significantly elevated hypersensitivity to mercury in many CFS patients (Stejskal et al., [84]; Sterzl et al., [85]; and Marcusson, [86]). This suggests that the immune system has responded to elevated mercury levels.

    (Note that there have been epidemiological studies that showed no evidence that dental amalgams are associated with CFS as a causal factor [87,88]. However, this does not constitute evidence that amalgams do not give rise to elevated mercury levels after CFS onset in people who have amalgams and who may have developed CFS as a result of other causes.)

    77. Ali, M., The Canary and Chronic Fatigue (1995), Life Span Press, Denville, NJ, p. 305.
    78. Godfrey, M.E., Dental amalgam, letter to the editor, New Zealand Medical Journal (28 Aug 1998) 111:326.
    79. Conley, E.J., America Exhausted (1998), Vitality Press, Flint, MI, p. 196.
    80. Poesnecker, G.E., Chronic Fatigue Unmasked 2000 (1999), Humanitarian Publishing Co., Quakerstown, PA, p. 210.
    81. Teitelbaum, J., From Fatigued to Fantastic (2001), Penguin Putnam, New York, p. 189.
    82. Corsello, S., Review of the multiple factors (loading theory) in the pathogenesis of chronic fatigue syndrome: theoretical review and treatment, conference syllabus, Latest 21st Century Medical Advances in the Diagnosis and Treatment of Fibromyalgia, Chronic Fatigue Syndrome and Related Illnesses, Sept. 19-21, 2002, Los Angeles, CA, Advanced Medical Conferences International, Chicago (info@AdMedCon.com).
    83. Goldberg, B., and Trivieri, L., Jr., eds., Chronic Fatigue, Fibromyalgia, and Lyme Disease, second edition (2004) Celestial Arts, Berkeley, CA, p. 175.
    84. Stejskal, V.D., Danersund, A., Lindvall, A., Hudecek, R., Nordman, V., Yaqob, A., Mayer, W., Bieger, W, and Lindh, U., Metal-specific lymphocytes: biomarkers of sensitivity in man, Neuroendocrinol. Lett. (1999) 20(5):289-298.
    85. Sterzl, I., Prochazkova, J., Hrda, P., Bartova, J., Matucha, P., and Stejskal, V.D., Mercury and nickel allergy: risk factors in fatigue and autoimmunity, Neuroendocrinol. Lett. (1999) 20(3-4):221-228.
    86. Marcusson, J.A., The frequency of mercury intolerance in patients with chronic fatigue syndrome and healthy controls, Contact Dermatitis (1999) 41(1):60-61.
    87. Yip, H.K., Li, D.K., and Yau, D.C., Int. Dent. J. (2003) 53(6):464-8.
    88. Bates, M.N., Fawcett, J., Garrett, N., Cutress, T., and Kjellstrom, T., Health effects of dental amalgam exposure: a retrospective cohort study, Int. J. Epidemiol. (2004) 33:1-9.


    Best regards,

    Rich
  9. snowathlete

    snowathlete

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    Hip - i think what you have done so far, is excellent. SUCH a helpful resource.

    I agree with Rich that Toxic metals is well worth testing. Im a new convert on this. The main thing that made me reaslise its significance was learning the role of glutathione in removing these toxins. Simply put, people with ME get a build up because their bodies cannot shift them out of their system as effectively as a normal healthy person. So there doenst necesarily have to be a greater exposure history than average, its just the part of our system that deals with this normaly, is broken.

    I know nothing about the tests, but would like to know more and there are certainly people on the forums who know alot about it.

    I think its worth expanding the 'similar illnesses section' and allowing it to be quite big, because unlike ME/CFS many of these other illnesses are treatable and they do go undiagnosed. The sad reality is that some of the people on the ME/CFS community, probably actually have some of these illnesses and could be treated if only they knew to test for them. Even for fairly rare disorders, its worth testing because the prognosis if you do have one of them is so much better than having ME/CFS.
    I think, I, and others listed a few things on earlier posts in this thread. I can help find them if thats helpful.

    Best
    Joel
  10. Hip

    Hip Senior Member

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    Thanks very much for those references.

    I see the point you are making: it's the apparent reduced ability to detoxify metals after ME/CFS onset that is the concern. And possibly a concern with increased hypersensitivity to certain toxic metals (elemental mercury and nickel) in people.

    So I guess the general advice to those with ME/CFS is:

    (1) Mercury Avoidance to minimize exposure to and ingestion of mercury.
    (2) Mercury Detoxification to take some supplements on an ongoing basis that help with getting mercury out of the body.
    (3) Mercury Testing (possibly) to see if you might have a higher than usual load of mercury and other toxic metals.



    Mercury Avoidance.

    I am confused by the complexity of this area, but I would have thought that mercury exposure from eating certain fish may be just as significant as mercury from amalgam fillings (depending on your diet), if not more so.

    I read that mercury absorption from amalgam fillings is in the order of 10 ?g of elemental mercury vapor per day (some of which I understand may get converted to methylmercury by oral and intestinal bacteria, with methylmercury being 100 of times more toxic to neurons than elemental mercury).

    But look at these fish, which are all high in mercury (and mostly in the more toxic methylmercury form):

    [table="class: grid, align: left"]
    [tr]
    [td]FISH[/td]
    [td]MERCURY PER KILO[/td]
    [td]MERCURY PER 200 GRAMS[/td]
    [/tr]
    [tr]
    [td]Tilefish[/td]
    [td]1450 ?g[/td]
    [td]290 ?g[/td]
    [/tr]
    [tr]
    [td]Swordfish[/td]
    [td]995 ?g[/td]
    [td]199 ?g[/td]
    [/tr]
    [tr]
    [td]Shark[/td]
    [td]979 ?g[/td]
    [td]196 ?g[/td]
    [/tr]
    [tr]
    [td]King mackerel[/td]
    [td]730 ?g[/td]
    [td]146 ?g[/td]
    [/tr]
    [tr]
    [td]Grouper[/td]
    [td]448 ?g[/td]
    [td]90 ?g[/td]
    [/tr]
    [tr]
    [td]Bass (Chilean)[/td]
    [td]354 ?g[/td]
    [td]71 ?g[/td]
    [/tr]
    [tr]
    [td]Tuna[/td]
    [td]144 ?g to 689 ?g[/td]
    [td]29 ?g to 138 ?g[/td]
    [/tr]

    [/table]

    Sources: FDA, Mercury calculator.

    Store or restaurant bought sushi can have high mercury levels, around 500 to 1000 ?g of mercury per kilo, the New York Times found (ref: here).

    Mercury concentrations in canned tuna were lower, with concentrations on average half that measured in fresh/frozen tuna.

    Mercury concentrations in UK-farmed salmon and trout were relatively low. The very maximum concentration found in fresh/frozen or smoked trout and salmon was 103 ?g per kilo (ref: here).

    Methylmercury in the human diet is almost completely absorbed (ref: here), so most of this ingested mercury from fish will enter the blood.

    Note: assuming methylmercury is worse for ME/CFS patients than elemental mercury, then you may have to multiply these fish mercury quantities by 100, to get their relative toxic effect compared to amalgam mercury, since I believe the mercury in these fish is mostly the methylmercury form, whereas the mercury from amalgams is in elemental mercury form (but some amalgam elemental mercury is converted to methylmercury; I am not sure what percentage). Perhaps you can confirm or deny this, Rich.


    For myself, as a precautionary principle, I have tended to avoid tuna fish since getting ME/CFS.


    I happened to get my amalgams removed before I got ME/CFS; but I am not sure this is good advice to everyone, unless perhaps they have a very high mercury load? It wouldn't be responsible to give blanket advice to people to remove their amalgam fillings in the roadmap.


    Mercury Detoxification

    Is glutathione supplementation the main recommendation here?


    Mercury Testing

    What guidelines should be given here, Rich, for testing?

    Would you think that the average ME/CFS patient, if they take a commercially available toxic metal test, will have higher mercury levels than someone in the general population? Or might just a certain subset of ME/CFS patients have measurably higher mercury levels?

    If testing does not generally produce meaningful results, it might be best to advise people to do mercury avoidance and mercury detoxification, but skip on the testing.

    Or might a toxic metal testing be valuable to say one unlucky ME/CFS patient in a hundred, that turned out to have very high mercury levels?

    It's not clear to me what the advantages or disadvantages of hair, urine or blood tests for mercury are. Some recommend a DMPS mercury challenge test to get meaningful results. There is lots of conflicting advice on which tests are best.

    (I know in the area of organophosphates pesticide toxicity, one crucial factor is the levels of the enzyme paraoxonase an individual has. This paraoxonase enzyme detoxifies the organophosphates from the body; however, the levels paraoxonase can vary by a factor of 150, from one person to the next. So some people can be 150 times more susceptible to pesticides than other people. I wonder if the same is true with mercury and other toxic metals? Is mercury detoxification related to levels of certain enzymes? In which case, is there a test available for the mercury detoxification abilities of an individual?)


    Aluminum is also seems to be a possible concern in ME/CFS, perhaps even more than mercury, but is much more difficult to avoid, since it is found in a wide range of foods, products and places. Silicic acid may be useful here (found in horsetail herb), as it reduces aluminum absorption in the gut, and increases aluminum elimination:

    The role of silicic acid in the renal excretion of aluminium
  11. Hip

    Hip Senior Member

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    Thanks snowathlete.

    I'd like to expand the 'similar illnesses section', and will do so, but this may take ages, as you need to spend a lot of time reading into the nuances (symptoms, testing, differential diagnosis) of each illness before you can write something useful.

    Though if we get a larger section of people involved in contributing to this document, and distilling everyone's special areas of knowledge and personal experience, it will hopefully make it easier and better.

    So far this collaborative approach seems to be working quite well.
  12. Hip

    Hip Senior Member

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