Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Interpreting These Results

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by mstrlucky74, Jun 16, 2017.

  1. mstrlucky74

    mstrlucky74

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    Hello. Can't someone shed light based on experience what they think of these results. Thanks a lot.
     

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  2. Wonkmonk

    Wonkmonk Senior Member

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    I have some experience with thyroid and herpes virus, I'd say the following:

    (1) Your thyroid values are lower than optimal, but still not too bad.

    (2) You had an earlier infection with EBV, but it is currently in a latent, inactive state.

    (3) You are CMV negative.

    (4) You had an earlier infection with HHV6 and IgG titers are quite high.

    (5) Can't comment on the rest.

    I would say this means the following:

    (1) Although these values cannot explain strong fatigue symptoms (they are just a bit too low), you should do a comprehensive thyroid exam with an endocrinologist. Especially check autoimmune disease, e.g. Hashimoto. If Hashimoto is negative, your mild underactive thyroid might be fixed by simply increasing iodine intake (more seafood or supplements).

    (2) EBV appears to be dormant as it should be. Sadly, the IgG is not quantified and just given as >8.0. But when early antibodies and IgM are both negative, it is rather unlikely that EBV is causing chronic fatigue.

    (3) Good! Be happy :)

    (4) The HHV6 IgG titer is quite high, I think the cutoff Dr Lerner and Dr Montoya use is >1:160. While I wouldn't say this is a smoking gun, it is a possible cause for CFS and indicates that you might possibly be able to profit from antiviral therapy (Valcyte) per the protocol suggested by Dr Lerner and Dr Montoya.
     
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  3. mstrlucky74

    mstrlucky74

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    Thanks a lot. To be honest I'm not very tired much at all.
     
  4. Wonkmonk

    Wonkmonk Senior Member

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    Do you suspect CFS based on other symptoms?
     
  5. mstrlucky74

    mstrlucky74

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    Not necessarily. About 7 years ago I got the flu and never have been the same. Bad gastro issues, anxiety, foggy brain, tough to breathe when jogging, unexplained weight gain. I've had just about every test and all negative ....except as attached.
     
  6. Wonkmonk

    Wonkmonk Senior Member

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    It sounds a bit like my case. My symptoms started exactly 10 years ago and in the first years, it didn't even occur to me that I might be sick. It progressed very slowly. I probably felt a bit of weakness or fatigue in the first years, but it wasn't until 5-6 years into it that I'd realize I have a health problem and my (still mostly mild) symptoms aren't normal.

    Your HHV6 viral titers are definitely in a range in which Drs Lerner and Montoya might recommend treatment, but I'm not sure they would do so in the absence of more severe clinical symptoms. So perhaps trying a treatment would make sense. Sadly, in your case the only antiviral that I know of that would be effective is the one with the greatest risks and side effects (Valcyte). It's also quite expensive.

    And then there is Dr Lerners observation that treatment has the best chances if started as early as possible, so waiting until symptoms get more severe might be counter-productive.

    It's a tough decision to make. Perhaps seeing a doctor specializing in viral-induced CFS would be the best way forward.
     
  7. mstrlucky74

    mstrlucky74

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    Thank you. Has there been any success with vitamin supplementation or any other alternative approach? Thanks
     
  8. Wonkmonk

    Wonkmonk Senior Member

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    There may have been in some cases, but I think most people would agree that if the reason for CFS or emerging CFS is indeed an out-of-control herpes virus infection, lifestyle and nutrition choices have only a very limited effectiveness (if any).

    The consensus in the scientific community is that herpes-virus induced CFS only in very few cases resolves without antiviral treatment.

    If it's the reason for your symptoms is non-permissive herpes virus infection as posited by Dr Lerner, and given the imperfect tools we have to firmly establish a CFS diagnosis that's a big *if*, it is very likely that anti-viral treatment will be needed.

    You can of course try to make lifestyle changes and see if you improve:
    - reduce stress
    - as healthy a nutrition as possible
    - get natural vitamin D through suntan + if necessary a supplement
    - try antiviral herbs and plants (e.g., garlic, ginger, cloves, curcuma, nigella have anti-viral effects)
    - Vitamin supplements, esp. B-Vitamins
    - NO sports !!

    But if you decide to do so, you should note that the most important variable that separated responders and non-responders in Dr Lerners studies was the time they were sick before starting treatment. So if you wait longer and your illness proceeds, your chances of responding to treatment and your prognosis tend to worsen.

    On the other hand, there is no absolute certainty that HHV6 is the cause of your symptoms and that anti-virals will help, and Valcyte is, as I said above, a pretty risky drug.

    It's indeed a very tough decision what to do next.
     
  9. Wonkmonk

    Wonkmonk Senior Member

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