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HHV-6A and HHV-6B now recognized as two distinct viruses

Discussion in 'General ME/CFS News' started by SOC, Sep 25, 2012.

  1. SOC

    SOC Senior Member

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    This may be relevant to us if the less common HHV-6a is found in many of us, as I suspect it might.

    Read about it at the HHV-6 Foundation: http://www.hhv-6foundation.org/

    Some interesting bits:
    [my bolding]





    HHV-6A and HHV-6B now recognized as two distinct viruses
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    HHV-6 can persist in the brain tissue long after primary infection and after evidence of the virus has long disappeared from the plasma in the circulating blood. Therefore, direct evidence of chronic infection is not easily attainable by standard laboratory tests. In other words, even though there is no DNA for HHV-6 (or other herpesviruses such as EBV) in the plasma, it is possible that one of more of these viruses are in fact smoldering in the tissues and throwing off inflammatory cytokines.
    Elevated antibody titers can only suggest–not prove–that the virus is active. Short of a tissue biopsy, it may be impossible to find direct evidence of chronic HHV-6 infection. Therefore, physicians who suspect active virus, in a chronic case, must treat based on clinical judgment of the symptoms, using elevated antibodies as one of several “clues”. Infectious disease specialist Jose Montoya, MD from Stanford University did this with 12 patients, treated for long standing fatigue and elevated antibody titers to HHV-6 and EBV. He selected CFS patients who had both elevated titers and symptoms consistent with HHV-6 infection (including cognitive dysfunction) and then treated these patients with a strong antiviral (Valcyte). Nine of the twelve patients improved dramatically, some of whom had been sick for over 10 years (Kogelnik 2006).

    copy and paste from the sight SOC linked in this thread, i thought was interesting as a few are talking about titre levels etc, this shows that titres arent neccessarily important.

    cheers!!!
     
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  3. SOC

    SOC Senior Member

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    I suspect this is why HHV-6 isn't getting the attention maybe it should in ME/CFS. If they can't find evidence of the virus on their standard tests, we don't have it, right? :rolleyes: Meanwhile, we try to survive with a persistent neurological infection.

    Lipkin's pathogen study is not likely to identify a persistent infection in brain tissue, is it? They're focusing on blood, as I recall. There was talk of rectal swaps also, though. Are they doing any further searches in spinal fluid?
     
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    DrPeterson has sent spinal fluid of some of his sample over here to australia for PHANU to test, what they are testing for i dont know.
     
    Enid likes this.
  5. SOC

    SOC Senior Member

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    Anything more happening at PHANU has to be good news. :)
     
  6. August59

    August59 Daughters High School Graduation

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    They are at least doing some spinal fluid in the CFI study. HHV-6 showed up positive both times mine was tested. I am almost positive that Montoya sends his HHV-6 samples to Focus Diagnostics to be run because the copy nymbers are so low that commercila lab test are just not thorough enough to find HHV-6 on a consistent basis.

    I did think I read where Focus Diagnostics is owned by Quest Diagnostics and ViroMed is owned by LabCorp. So they both have there backup research type testing available.

    I do think that eventually HHV-6 will come to be known as the cause of a lot more symptoms, especially neurological symptoms that we have.
     
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  7. SOC

    SOC Senior Member

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    I have trouble letting go of the idea that ME/CFS, at least for my daughter and I, is an infectious illness. We came down with the same very sudden onset flu-like illness within a week of each other, which was the beginning of our illness journey.

    Since we were both later diagnosed with chronic HHV-6 infections and are both a lot better (not cured) after Valcyte treatment, I have to wonder if HHV-6 -- maybe adult acquired HHV-6a -- is the primary culprit.

    That's pure speculation, though. I've got plenty of other infections, so chronic HHV-6 could have been just another opportunistic infection. Still, as August59 suggested, it may be the cause of many symptoms, especially neurological ones.
     
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  8. vli

    vli

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    I agree with this, at least I feel this is true with regard to my own neurological symptoms
     
  9. vli

    vli

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    BTW, short of what's quoted off of the HHV6 foundation website itself, are there any other authorities (any physicians???) who say that EVEN tissue biopsy is not enough????? This is what Enlander said to me in a nutshell. He said he did not think too much of the stomach biopsy I did last year with K De Meirleir because he said even if the HHV6 in my body was just latent, they could still have found a super high level of it in my stomach. I personally don't agree with this, but I have no evidence to back up my view (Enlander told me that even after I told him what the foundation website said).

    Incidentally, the ton of hhv6 they found in my stomach was hhv6-b, not a.
     
  10. Rrrr

    Rrrr Senior Member

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    vli,

    did you treat with valcyte or valtrex, and if so, what were the results?

    rrrr
     
  11. Rrrr

    Rrrr Senior Member

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    thanks.
     
  12. ixchelkali

    ixchelkali Senior Member

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    I'm hoping that was rectal swabs. :p

    I know, it's not fair to make fun of brain-fog dyslexia, but that one was too good.
     
  13. SOC

    SOC Senior Member

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    ROTFLOL! Okay, that has to be one of the best. :D Laugh all you want! We have to see the humor in this illness if we're going to stay sane. :)
     
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  14. vli

    vli

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    No, I did neither. Not really sure what to do now really except keep plugging away at the 400mg Amp.
     

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