The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

Discussion in 'General Treatment' started by Hip, Jul 25, 2014.

  1. paolo

    paolo Senior Member

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    You can have a patient negative for the two tier test, but with a positive PCR for borrelia. As you know PCR has the greates specificity (there are many false negative) and the lowest sensitivity (there aren't flase positive at all). So I consider the two tiers test not 100% reliable. But, you see, I have Lyme, so I had to study that subject.
     
    Last edited: Mar 20, 2015
  2. paolo

    paolo Senior Member

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    Lyme disease can mimic many disease very closely. Some times it'is hard to distinguish Lyme from Lupus or SLA or MS. This means that Lyme doesn't have a unique presentation. It has been described by Donta and Fallon a sub set of chronic Lyme with arthralgia, brain fog and fatigue. I also know that, in Lyme, tipically you have arthralgia which migrates from one joint to the other, but I'm not able to give you a specific reference at the moment.

    I belive that chronic Lyme -in some cases- is clinically indistinguishable fom CFS (Goets, Mikovits, Ruscetti. 2014 'Chronic fatigue Sybdrome', chapter 6). In my opinion this is due to the fact that both Lyme and CFS are chronic infections which drive a similar immune response.
     
    Last edited: Mar 20, 2015
  3. paolo

    paolo Senior Member

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    Lead, mercury and cadmium load has been linked with CFS-like symptoms, but I agree: I don't know any study about chelation in CFS. I have to study deeper this topic.
     
  4. Hip

    Hip Senior Member

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    If you can point me to an authoritative source that suggests a procedure for Lyme testing that is different to the CDC procedure, I can include it in the roadmap.

    But is has to be an authoritative source, such as an expert Lyme researcher or expert Lyme doctor, because there is a lot of controversy in the area of Lyme testing, and lots of differing opinions. There certainly needs to be much more research in this field, because the science is underdeveloped.

    Because of all the controversies, I have just referred the reader to the standard CDC testing.


    Have you seen Michael VanElzakker's vagus nerve infection hypothesis of ME/CFS? VanElzakker proposes that ME/CFS arises from an infection in the vagus nerve. He details an immune mechanism called "sickness behavior" by which a vagus infection can cause the symptoms of ME/CFS.

    Interestinly, VanElzakker thinks that the particular infectious pathogen is not important; the only thing that is important is whether the pathogen infects the vagus nerve. So in VanElzakker's hypothesis, if Borrelia were to infect the vagus nerve, that would also lead to the symptoms of ME/CFS.
     
  5. paolo

    paolo Senior Member

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    Yes, there is a lot of controversy, sadly. This one of the first studies about seronegative Lyme, from the New England Journal of Medicine:

    http://www.nejm.org/doi/full/10.1056/NEJM198812013192203

    The authors concluded that Lyme disease cannot be excluded in the absence of serological response. They valuate T cells response to make the diagnosis and the clinical picture.

    In this recent publication (by an Institute of Rheumatology in Prague) you have the description of a case of seronegative Lyme (by Borrelia garinii) were PCR is positive, despite the patient is CDC negative:

    http://www.ncbi.nlm.nih.gov/pubmed/12189466/

    In this other arthicle you have a comparison between melisa LTT (a test widely used in Germany, but still not universaly recongnized around the world) and the double tiers proceure you mentioned:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4307574/

    It is reported that LTT is positive in mre than 40% CDC negative patients.

    I will provide further details in my own work about this issue, but consider that in the clinical practice is not uncommon to have PCR positive patients who are CDC negative.

    Yes, I studied VanElzakker's theory. I'm studying other pathways through which infections can drive brain issues. But I don't belive that CFS is 'only' sickness behavior. I strongly belive that it is much more.

    You can find -in CFS as well in Lyme- a weak but diffuse damage of the brain, and also other body systems are involved.

    But I agree that CFS is a chronic infection, and it doesn't matter if the infection is HHV6, coxsackie B-3, Borrelia garinii or Mycoplasma fermentans. These are all pathogens which have the ability to become humans' life long companions.

    I think you have done a great job in putting all these causative agents togheter. This is a priceless tool for patients.
     
    Last edited: Mar 21, 2015
  6. Hip

    Hip Senior Member

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    @paolo
    In an earlier version of the ME/CFS roadmap, I did include a link to the Borrelia culture test available at Advanced Laboratory Services.

    Rich Van Konynenburg actually recommended this Advanced Laboratory Services test. He seemed to think it was very accurate. But then I took this test out of the roadmap, because of this warning (see also here) by the CDC about the Advanced Laboratory Services test and other non-approved tests.

    Thanks for that interesting paper about the about LTT-MELISA test for Lyme. The test looks good, but I guess it may take a few years for it to be standardized and officially recommended.

    This article about PCR for Lyme seems to conclude that PCR is not generally very useful.


    Sickness behavior on its own probably cannot account for all the symptoms of ME/CFS, for example it cannot account for the orthostatic intolerance and autonomic dysfunction. But if VanElzakker is right, and the vagus nerve is infected, then since the vagus is part of the autonomic nervous system, this might help to explain some of the autonomic dysfunction found in ME/CFS.

    I also think that an infection within the brain itself might cause the inflammatory release of the cytokines IL-1β, TNF-α and IL-6 that drive sickness behavior. So even if the vagus is not infected, a brain infection might cause sickness behavior.

    This mouse study found that when coxsackievirus B infected astrocyte cells in the brain, the cytokines released were precisely the sickness behavior cytokines IL-1β, TNF-α and IL-6. So my idea is that if coxsackievirus B gets into the brain and causes a long term infection in the astrocytes, this could cause many of the symptoms of ME/CFS, via the sickness behavior mechanism.

    My ME/CFS is likely linked to enterovirus / coxsackievirus B, so I am interested in enterovirus etiologies.


    By the way, did you see this amazing treatment for the brain fog of Lyme using very low doses of the Amanita muscaria (fly agaric) mushroom? To quote: "[fly agaric has] taken me from being an exhausted cripple with severe dementia-like symptoms to being pretty much a 'normal' person again."


    Thanks. It did take me a few years to put the roadmap together, because of low energy and brain fog, and also because I have a lot of ADHD (attention deficit disorder), which makes reading more difficult for me. I sometimes update and improve the roadmap, when I find new info that is of interest to ME/CFS patients. So it is an ongoing project.
     
  7. paolo

    paolo Senior Member

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    I've never heard of this test. I will study it.

    As you mantioned, there's a controversy about chronic Lyme disease, and it's not so easy to explain the whole picture of this kind of war between two parties. But I belive that CDC is not completely evidence based in its statements. This is my opinion.

    As a Lyme sufferer I'm searching the available data in order to improve my health (as you are doing with coxsackie viruses) and I'm noting that there is something wrong in what CDC states about this illness, particularly about the chronic form, which is sometimes really close to CFS.

    I do agree. I would also add that these substances, along with others, can directly or indirectly damage the brain, as you can see in brain imaging studies. We have -both in Lyme and in CFS- ipoperfusion and white matter lesions. We have reduction in brain volume, too.

    Very intersting! In Lyme studies you can find these substances too. I belive that this is the common path way that causes CFS (and chronic Lyme), no matter what the infecion is. But I belive that the infection has to be chronic. I do not see CFS as a post infectious disease. Do you agree?

    I see. By the way, a very close friend of mine has an apparently chronic coxsackie B infection. She has a borrelia infection too. She has been classified as CFS, here in Italy.

    I learned about Equilibrant from your Roadmap, so she is going to try it.

    I've never heard of this mashroom as a treatment, thanks so much. I will study/try it. I do suffer of brain fog when I'm fatigued, then -during short periods of relative improvment- I have ADHD. So, it's very sad. My mind has been destroied for a long period of time (years). And I've lost everything... It's a common story, I guess.

    Thanks so much for your attention and for your work!
     
  8. Hip

    Hip Senior Member

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    After your recommendation of Dr Fallon, I read this article, where Dr Fallon talks about the problem of "overstating the science".

    This "overstating the science" seems to be a problem with Lyme disease: some authorities are making strong statements and claims about Lyme disease and Lyme testing, but in fact there is currently not enough scientific evidence to make such strong statements and claims.


    Agreed, the evidence indicates that ME/CFS is more likely due to an ongoing low level chronic infection, rather than from some damage caused during an acute infection (ie, post-infectious).

    If you look at the work Dr John Chia did with intravenous interferon and also oxymatrine on ME/CFS patients, you see that as viral loads in the tissues were reduced by these treatments, ME/CFS symptoms were reduced. Some people went from bedbound to back to work using these treatments. But then when treatments were stopped, viral loads went back up, and the ME/CFS symptoms returned.

    So this indicates it is the ongoing infection that likely causes ME/CFS.


    I bought my Amanita muscaria (fly agaric) dried mushroom from here. The dose used for treating Lyme brain fog is around 50 to 200 mg of the dried mushroom daily. At this very low dose level, you will not experience any of the psychedelic / dissociative effects that higher doses produce. When people take Amanita muscaria for a psychedelic "trip", they take much higher doses of several grams.

    Amanita muscaria did not help with my ME/CFS brain fog, unfortunately.
     
  9. David Hammond

    David Hammond

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    Hi @Hip

    I have compiled some information which may convince you to add mercury toxicity to your beginner’s ME/CFS roadmap for testing and treatment

    It is widely accepted that ME involves disruption of the hypothalamus-pituitary-adrenal axis (HPA). Mercury affects all three organs. The pituitary and hypothalamus are the most vulnerable parts of the brain to mercury poisoning as portions of these glands are not protected by the blood-brain barrier. The kidneys and adrenals contain very high levels of mercury following exposure.

    Mercury reduces the production of cortisol by the adrenal glands which results in fatigue. One study investigated the effect of chronic mercury poisoning on the adrenal and testicular glands of rats. The rats were injected every second day with a small dose of methylmercury for six weeks for a total of 6 mg of methylmercury. At the end of this period the animals were subjected to a work tolerance test in which the animals had to swim to fatigue in a stainless steel tank of water at 25°C. Those rats which had been treated with methylmercury appeared to swim normally, but could only swim for 7 minutes on average, compared to over 180 minutes for the controls. If the experimental rats were injected with cortisol they were able to swim for 25 minutes.

    Another important finding from this study is the fact that at rest, the methylmercury poisoned rats had normal levels of cortisol. During periods of stress (physical or mental), the pituitary gland produces adrenocorticotropic hormone (ACTH), which stimulates the adrenals to synthesize cortisol resulting in increased blood levels. However, in these poisoned rats, while the cortisol level was normal at rest, under stress the level in the treated rats was only about half that of the control rats.
    http://www.tandfonline.com/doi/abs/10.1080/15287398009529877

    One of the frequent clinical findings in fibromyalgia patients is the presence of thyroid antibodies. Rheumatologist Laura Bazzichi and her colleagues investigated the prevalence of thyroid abnormalities in 120 patients diagnosed with fibromyalgia. They found that 41 percent had at least one thyroid antibody present in their blood. These patients with thyroid antibodies were also more likely to experience dry eyes, burning or pain with urination, allodynia (stimuli such as light touch are painful), blurred vision and sore throat. http://link.springer.com/article/10.1007/s10067-007-0636-8

    The NHANES 2007-2008 survey found that women in the top 20 percent of blood mercury levels were more than two times more likely to have thyroid antibodies than those with the lowest blood mercury. The women in the top 20 percent had blood mercury over 1.8 mcg/L which is well within the current the EPA level of concern of 5.8 mcg/L. So, it seems that even if your blood level is within the current recommended limits it is no guarantee that you will not experience adverse effects due to mercury. http://www.sciencedirect.com/science/article/pii/S0160412011002716

    Mercury depletes glutathione levels. http://www.sciencedirect.com/science/article/pii/0006295283904045 Glutathione (GSH) is necessary for protection against oxidative stress. GSH has been shown to reduce oxidative stress due to viral infections and to decrease the severity of infections such as influenza, coxsackie viruses, dengue fever and HIV. Even low doses of mercury can have significant effects on immunity. A single injection of 20 micrograms of mercuric chloride caused increased severity of a herpes simplex type 2 (genital herpes) virus in mice. The researchers found increased virus replication and dissemination during the first few days of the infection. Recurrent herpes simplex 1 infections presenting as mouth ulcers are a common symptom in mercury-poisoned individuals. As you mention in your road map, many viruses are suspected of contributing to the causation of ME/CFS.

    http://iospress.metapress.com/index/EYQ1Q2J90A57Y82F.pdf http://www.sciencedirect.com/science/article/pii/S0300483X96034099

    Mercury poisoning can also lead to chronic fatigue through its effects on thyroid hormones. The thyroid hormone T4 is converted to T3, its active form, by the iodothyronine deiodinase enzyme. Mercury bonds with the selenium in this enzyme thus reducing the amount of conversion that can take place. This is particularly important in the brain where 80 percent of the T3 is produced locally within the brain, rather than by the thyroid gland. Mercury inhibited deiodinase activity in treated mice to 50% of the controls. This would result in decreased conversion of T4 to T3 and hypothyroid symptoms. http://jlc.jst.go.jp/JST.Journalarchive/bpb1978/3.149?from=Google

    Ingegerd Rosborg and her colleagues from the University Hospital in Goteburg, Sweden compared the levels of trace elements in the blood and urine of 38 females with fibromyalgia with 41 female controls to determine whether these elements have any role in the causation of the disease. They analyzed the levels of a total of 30 elements including cadmium, copper, zinc, selenium, mercury, cobalt, lead, calcium and magnesium. From their results they concluded that trace element abnormalities do not play a significant role in the development of the disease.

    The blood mercury levels were the same in both groups, however the fibromyalgia group had on average only one-third the amount of mercury in the urine. The researchers assumed this was not relevant. Actually, this low urine level is very significant as it shows those with fibromyalgia were not able to excrete mercury efficiently. Therefore the mercury concentration would gradually increase in the various target organs within the body over time. Low urine and hair mercury concentrations are often found in those with mercury poisoning, which unfortunately leads many medical professionals to assume mercury is not the cause of the patient’s health problems. http://www.sciencedirect.com/science/article/pii/S0048969707005529

    As for the successful treatment of CFS/ME with chelation – I am 80% cured and there is another case history in my book, as well as this case of a woman who had fibromyalgia for 35 years. http://www.infectionconnection.net/....-Hedberg-Fibromyalgia-Original-Internist.pdf There are also many success stories from the yahoo group on frequent dose chelation. Stridor, a member on Phoenix Rising, also had considerable improvements in chronic fatigue symptoms with chelation and methylation protocols.

    Cheers,

    Dave.
     
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  10. Hip

    Hip Senior Member

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    Hi @David Hammond

    Thank you very much for posting a that information on how mercury might be linked to ME/CFS. It's much appreciated.

    You have pointed out a connection between mercury and certain aspects of biochemistry that are involved in ME/CFS (such as cortisol, glutathione levels); interesting though these connections are, I don't think they constitute any definitive evidence that mercury may be playing a role in ME/CFS etiology.

    You could look at many common toxins in the environment (such as bisphenol-A, phthalates, brominated flame retardants, formaldehyde, xylene, toluene, lead, aluminum, rotenone, paraquat) and you would likely find that many of these affect aspects of biochemistry that are involved in ME/CFS; but that in itself would not provide any evidence that exposure to these toxins is a risk factor for ME/CFS.

    Though certainly exposure to the toxins I listed has been demonstrated as a risk factor for various other diseases. For example, rotenone or paraquat exposure has been linked to Parkinson's.

    Of course it would be wise to avoid these various environmental toxins in order to try to improve health; but that is not the same as demonstrating that a specific toxin can trigger ME/CFS, or increase the risk of developing ME/CFS.

    The effect of mercury of the conversion of T4 to T3 is interesting, but this does not directly relate to ME/CFS. ME/CFS is a distinct condition to thyroid disorders, and in fact patients need to be tested to ensure they don't have hypothyroidism before a diagnosis of ME/CFS can be given (because hypothyroidism mimics ME/CFS symptoms).

    As for the effect of mercury on coxsackievirus B infections (a virus strongly linked to ME/CFS), in a previous thread we discussed a study about how body mercury levels at the time of acute coxsackievirus B infection do play a role in how severe the subsequent chronic infection becomes; however, that study also found that further increases in mercury in the body after the acute infection did not worsen the chronic infection.



    I appreciate that in your own case, because you were poisoned by mercury over many years due to industrial workplace exposure, mercury detoxification may have been beneficial for you. By the way, did your symptoms match ME/CFS by the CCC definition?

    I don't see any problem in ME/CFS patients trying mercury detoxification; and I might at one point even try such a detoxification myself; however, when there is very little evidence to indicate that this will help ME/CFS, it would not be responsible or accurate to include mercury in the roadmap as a causal factor or an associated factor in ME/CFS. I try to maintain the roadmap as a set of treatments known to help ME/CFS, rather than speculative treatments that might help ME/CFS.

    What I could consider doing though is adding a section in the roadmap that deals with toxins in general, including mercury, but also many other environmental toxins, such as the ones that I listed above. Overall health should benefit from a general avoidance of toxins.

    I generally try to avoid toxins where feasible. I placed some special houseplants in my room that NASA research showed absorb common indoor toxins such as formaldehyde, xylene and toluene. Since installing these plants, I feel much less groggy in the winter (when central heating pumps out lots of formaldehyde in the indoor air).
     
    Last edited: Apr 3, 2015
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  11. Hip

    Hip Senior Member

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    @David Hammond

    One thing you might want to consider is starting a new thread on this forum suggesting that interested ME/CFS patients could try out mercury chelation on an experimental basis. You might detail which tests to take to determine current mercury levels, and, based on the test results, you could provide some guidance on who might best benefit from mercury chelation.

    If in such an experiment we can get sufficient evidence to indicate that mercury chelation does improve ME/CFS symptoms, I could then include mercury chelation in the roadmap.

    If you look at say the methylation protocol, you can see on this Phoenix Rising poll that, out of the 80-odd respondents to the poll, around 25% of achieved major improvements in their ME/CFS from methylation. That is good enough evidence to warrant inclusion of methylation in the roadmap as a treatment that can benefit ME/CFS. So if we had lots of ME/CFS patients doing mercury chelation, we could run a similar poll.

    I guess the difficulty with doing a mercury chelation trial on this forum, though, is that I believe it may take several years of continual chelation before any significant results might manifest, since chelation only removes mercury very slowly. Or do you think some noticeable health benefits might accrue more quickly, perhaps after say 6 months?
     
    Last edited: Apr 3, 2015
  12. markielock

    markielock staying independent, one day at a time

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    This is an excellent resource, thanks. Despite being diagnosed with a 'presumed post-viral fatigue' by Ninewells Hospital in Scotland at the end of last year, having suffered the symptoms since 2010, a part of me is not convinced every stone is unturned. I am thinking of getting in touch with one of the GPs listed for a secondary interpretation.
     
  13. kanejo

    kanejo

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    Thank you for all the work you did to put together the Roadmap. Much appreciated by a longtime patient. Slowly the science is starting to change and treatments exist I haven't tried.

    I am currently seeing Dr. David Kaufman of the Open medicine clinic located in Mountain View CA not S Cal as listed on Roadmap. You may want to correct.

    I tried mercury removal of amalgam fillings and chelation therapy 11 years ago. My mercury levels went down, but I didn't feel any better.

    I was diagnosed with an enteroviruses by Dr. Chia and tried oxymartine 3-4 years ago Unfortunately, I was not a responder.

    These treatments work for some, but don't for others. Trying LDN and antivirals this year.
     
  14. kanejo

    kanejo

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    p.s. what is vzv listed on antivirals chart?
     
  15. halcyon

    halcyon Senior Member

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    Varicella zoster virus, the herpes virus that causes chickenpox.
     
  16. Hip

    Hip Senior Member

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    Thanks, I have updated it.


    I did not respond to oxymatrine either, and appear to have enterovirus-associated ME/CFS.
     
  17. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @Hip - Thank you for putting this EXCELLENT resource together. It's so clear and easy to follow!

    I took your above quote off the other page and want to know if you can direct me to this source of information or any other source where it is recommended to take breaks from low dose naltrexone. I've been on LDN for 4 months and am still exhausted and wondered if skipping a dose two days a week might help.

    Thank you!
     
  18. Hip

    Hip Senior Member

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    Glad you like the roadmap.

    There is no specific source for Dr Cheney's recommendation of "pulsing" immunomodulators; I have read it in many places. This Google search will help you find some sources.

    However, I am not sure if this pulsing recommendation applies to LDN. People tend to take LDN on a continuous basis. And pulsing definitely does not apply to oxymatrine; if oxymatrine works for you, you have to keep taking this daily, or you will start to regress if you take breaks.

    I think Cheney's pulsing idea applies more to Imunovir / inosine, and Kutapressin / Nexavir. I am not aware of any other ME/CFS doctor that recommends pulsing though. It's just one of Cheney's things.


    I have just updated the roadmap to make it clear that pulsing primarily applies to Imunovir / inosine and Kutapressin / Nexavir.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Theres some studies where immunovir is used daily for 3 months or more. One i recall kept immune function up for a couple of months after using it for 3 months???
     
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  20. Frank1918

    Frank1918

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    Great thread and links. Thank you
     

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