The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Herpes Vs. XMRV

Discussion in 'General Treatment' started by Tia, Feb 1, 2011.

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Do you have a herpes infection?

  1. No

    3 vote(s)
    12.0%
  2. Yes

    22 vote(s)
    88.0%
  1. Tia

    Tia Senior Member

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    Just to check, how many of you have got an herpes infection? (Coldsoars on the lips from time to time.) Curious as to the whole EBV-thing, and the link between xmrv and herpes.
     
  2. Enid

    Enid Senior Member

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    Quite agree Tia - Plague life long but curiously not the simple lip kind since ME.
     
  3. maryb

    maryb iherb code TAK122

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    Yes I have the herpes simplex as well as EBV and CMV plus XMRV. All good room mates in my body:(
     
  4. busybee

    busybee Senior Member

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    I think mine is herpes based. I've had neuralgia for 14? years, the pain spreads with activity. I have blood blisters elsewhere :eek:(and still no treatment on the NHS) but never any evidence of cold sores etc. My husband had shingles when I was first ill (before the neuralgia) and he had Bells Palsy when my hair started falling out, about 8 years ago.
     
  5. ukxmrv

    ukxmrv Senior Member

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    I've tested positive for viruses that are members of the Herpes family and also XMRV. This makes sense to me. HIV+ patients also tested positive for Herpes family viri. When Dr Peterson tested some of this patients he found them infected with many more viri than normal. We probably have numerous other infections (bacteria, yeast) just like HIV+ patients before they got treatment.
     
  6. August59

    August59 Daughters High School Graduation

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    I have the herpes simplex virus and I would get at least 1 lip blister a year until I got ME/CFS 5 years ago. I have not had a single outbreak since becoming ill with ME/CFS. I also have very high EBV (EA,VCA and NA) and HHV-6.
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i wonder if some of us fit into lerners ebv/cmv/hhv6 group and other have all that and xmrv or just xmrv. I dont know if im xmrv, but positive to ebv and cmv and responding to antivirals. I wonder if the herpes infections is a co-infection from an underlying immunodefiency, which could be xmrv. I almost have my lymphocytes down to normal but still have some energy problems and sleep problems, so i wonder if it just takes time to heal or there is damage done from these viruses.

    cheers!!!
     
  8. alice1

    alice1 Senior Member

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    I`m ebv and hhn6 positive but I`ve never had a cold sore on my body.Don`t know what that`s about!
     
  9. Tia

    Tia Senior Member

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    Perfect example of what I mean by them setting each other off: maybe it started with one who set the others off, OR it started with xmrv and then contracted herpes since the immunesystem couldn't fight both, being in highoperative mode already? We're on to something here..
     
  10. Tia

    Tia Senior Member

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    Could it be as simple as your immunesystem fighting it from breaking out..? Just a though..
     
  11. Tia

    Tia Senior Member

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    That's what I'd like to know to, from what I've heard, though, we're supposed to get all improved with AV's, but we'll see.. U're the testdummy then, heaps. ;P
     
  12. Tia

    Tia Senior Member

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    There's DEFINITELY domething to this..these ARE connected somehow.
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    so am i after the test dummy, lol, oh i am the test dummy im not good a tests but the other part i can do no worries, the dummy part, lol. Whats for morning tea, yum.
     
  14. SOC

    SOC Senior Member

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    My uncle appears fully well after a LONG time on antiherpetic AVs. He seems to be the exception, though, and I'm hearing some things that make me wonder if I'm seeing very small issues that may indicate he's not quite 100%. It seems to me that the vast majority of people who improve on AVs get substantially better -- feel like they have their lives back -- but they're not 100% back to pre-illness condition.

    My suspicion is that the herpes virus infections, and there's a whole host of them, are secondary to whatever is causing our immune dysfunction. By that logic, patients will feel a lot better when those infections are treated, but not 100% because we're still not treating the cause of the immune dysfunction.

    My daughter now has a superficially normal life after a year on Valcyte, but she's actually only 70% or so. I'm a lot better after a year on Valcyte, but still largely housebound and need daily naps. I'm thrilled with how much better I am with Valcyte, but I won't be surprised if I don't get back to 100%

    There may be a few of us who have only active herpesvirus infections, but I bet they're in the minority. Just my guess, though. :D
     
  15. Grape Funk

    Grape Funk Senior Member

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    btw heapsreal, fyi hh6 is very hard to detect in the blood serum, as it mainly lives in tissues, and the brain at that. People get false positives. HH6a is also found in predominately CFS, MS, AIDS, and Cancer patients.
     
  16. Nielk

    Nielk

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    When you say you have EBV, CMV, HH6, do you mean you have the active infection right now?
    My blood-work shows hight tithers for these infections but not necessarily the active infection right now.
    It also shows positive for one of the Herpes viruses and Parvovirus.
     
  17. ukxmrv

    ukxmrv Senior Member

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    Nielk, I've had numerous tests over decades. EBV and CMV have at different times come up as active. The HHV6 I can't remember. Have not had virus tests in the last 5 years. I'm in the UK and need to pay privately to do these and cannot afford to do so.
     
  18. taniaaust1

    taniaaust1 Senior Member

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    Ive got quite a few of the herpe family of viruses .. CMV (HHV-5), i get cold sores at times (HHV1 or 2), and had mono (HHV-4) bad. I also carry HPV. For some strange reason i seem to be immune thou to chicken pox (HHV-3) (never had it thou been exposed to it many times).

    I havent been tested for HHV6.
     
  19. Nielk

    Nielk

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    I hear you. Thanks for your reply. Too bad about the insurance problems there.
    I wish they would give you guys there a break!!!!
     
  20. Nielk

    Nielk

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    Could it be that you did have chicken pox as a child and it was such a weak case that no one noticed?
     

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