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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High coxsackie viruses -- what does this mean?

Discussion in 'General ME/CFS Discussion' started by el_squared, Oct 15, 2015.

  1. el_squared

    el_squared

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    Hi there,

    So the nurse at the CFS clinic at Stanford said I tested "quite high" for the coxsackie viruses -- viruses plural, although I don't yet know which exact viruses or what the numbers are.

    A few weeks ago, I tested high (IgG only) for EBV, HHV6, and mycoplasma pneumonia, which Stanford also told me was significant.

    So, I'm wondering if there is any consensus on what of these viruses is most relevant to CFS? For example, should I address the enterovirus problem before Epstein Barr, etc.

    I don't get to talk to the people at Stanford often and my next appt isn't for a couple months.

    thanks,
    Laura
     
  2. halcyon

    halcyon Senior Member

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    @el_squared If you haven't already you should get an account setup on their patient portal, then you have access to all of your lab test results online.

    The short answer to your question is no, there is no consensus on which is most relevant. We became obsessed with EBV and HHV6 early on here in the US, even though these pathogens cannot be the cause of the epidemic form of the disease and it's hard to make them fit as the cause of the endemic form. The long answer is that a number of the well known and well respected clinicians who have studied this disease believe that it is caused by several types of enteroviruses, of which coxsackievirus is one. For this reason I believe that attempting to address enterovirus infections in this disease is very important.

    It would be good to get your hands on the results to see specifically which came back positive and what the titers were.
     
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  3. el_squared

    el_squared

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    Thanks. I'm on a patient portal, but the tests won't be released to me for another day or two.

    By the way, what does "titers" mean? Does that mean the numerical value of the lab result?
     
  4. halcyon

    halcyon Senior Member

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    Essentially yes. It's a measurement of the concentration of something, in this case the amount of antibody to a specific virus present in the blood. The clinical assumption being that the higher the concentration of viral antibody in the blood, the more likely it is that the body is currently being exposed to an active infection with that virus.
     
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  5. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    No reasons why you can't treat more than one virus or infection st the same time.

    Most of these take quite awhile to treat.

    Re: labs availability. California has law that they won't release labs for 2 weeks which gives the doc time to go over them with you.
     
    Valentijn likes this.
  6. el_squared

    el_squared

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    Thanks. By the way, I believe that lab availability law changed in CA. That according to Labcorp.
     
  7. SOC

    SOC

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    There's a great deal of question about whether viruses are the cause of ME/CFS, and if they are, which virus(es) are the cause. What is less in question is that many PWME suffer from multiple active infections involving pathogens that are cleared or kept latent in healthy people. Your list of pathogens is pretty typical. I, for one, had those and more.

    While those pathogens may not be the cause of ME, they need to be dealt with. Stanford is among the best for that, so you're in great hands!

    IIRC, there's not an easy established treatment for coxsackie virus. Equilibrant worked for me, but you may need something stronger... if such a thing exists.
     
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  8. jess100

    jess100 Senior Member

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    The long answer is that a number of the well known and well respected clinicians who have studied this disease believe that it is caused by several types of enteroviruses, of which coxsackievirus is one. For this reason I believe that attempting to address enterovirus infections in this disease is very important.


    What treatment are possible for enteroviruses? ( I thought there were none). The Enterovirus Foundation website says this:

    There are no approved medicines, antiviral treatment, or vaccines for non-polio enteroviral infections. The Enterovirus Foundation is working with researchers on a global level to find a treatment that will eliminate the virus and keep enteroviruses from developing into chronic conditions. Our greatest effort at this time is prevention.

    Is anything available to treat them?
     
  9. halcyon

    halcyon Senior Member

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    There are no FDA approved direct antivirals, but several things have shown varying efficacy depending on the serotype of infection and the person including interferon α/β/γ, ribavirin, amantadine, lamivudine, and oxymatrine.
     
    SOC likes this.
  10. Hip

    Hip Senior Member

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    These are all viruses strongly linked to ME/CFS. Dr Chia has used the immunomodulator oxymatrine with some success in treating ME/CFS. Prof Jose Montoya at Stanford uses the potent antiviral Valcyte to treat herpes family viruses like EBV and HHV-6.

    The late Dr A Martin Lerner only considers a ME/CFS patient to have a persistent Mycoplasma pneumoniae infection if their titer is 1:600 or more. 1
     
    el_squared likes this.
  11. el_squared

    el_squared

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    Hi, So I would like to try Equilbrant. However, I see an interview with Dr. Chia from 2009 saying that auto immune sufferers should not take it. I don't know if this opinion is dated or not. Stanford is recommending I take it and they seem to be ignoring my questions about the auto immune issue.
    I have Celiac Disease and have been gluten free for 10 years. So, perhaps you could say that my auto immune issues aren't active, but I don't know for sure. I'm certainly ill.

    http://phoenixrising.me/archives/865
     
  12. Hip

    Hip Senior Member

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    I presume the Dr Chia interview you read is this one: Dr. Chia On Oxymatrine, Autoimmunity, ME/CFS and FM


    I recently posted here a transcript from a presentation Dr Chia's gave in 2010, where he talks about his oxymatrine / Equilibrant research. In that transcript, Dr Chia said he found 1 in 500 ME/CFS patients on the oxymatrine treatment developed rheumatoid arthritis.

    But apparently the patient who developed RA had "a very strong family history of rheumatoid arthritis, l and was having severe joint pain even before the herbal [oxymatrine] treatment."
     
  13. Violeta

    Violeta Senior Member

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    Are you willing to try herbals?
     
  14. jess100

    jess100 Senior Member

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    I absolutely am willing to try herbals. Am doing so for SIBO currently. What do you suggest?
     
  15. Violeta

    Violeta Senior Member

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  16. jess100

    jess100 Senior Member

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    thanks very much for sending this along. I think making a strong tea would be the best way to get these into my body.

    FYI for SIBO I'm taking 2 supplements but none of the things on your list are in those supplements.

    Thanks again-love your line about medical confusions (reflects my confusions)
    Jess
     
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