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Epstein-Barr Virus and Autoimmunity

Discussion in 'Other Health News and Research' started by heapsreal, Sep 20, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    http://espace.library.uq.edu.au/eserv.php?pid=UQ:9195&dsID=mp_ebv_04.pdf

    Reading articles similar to the above and now with the xmrv confirmed negative, although another retrovirus could always be possible, but all us with cfs/me, maybe we have an autoimmune condition combined with immune defiencies(nk and tcell dysfunction) that then leave us open to many different types and combo's of infections. All this can also put us in a viscious circle. That would explain the many partial responses to treatments as i think even the guru docs only really ever go after a few of these issues?? Dr Kogelnik seems onto something with ritux and antivirals. I would love to be inside his brain, although i probably wouldnt have a clue what was going on, i think it would be interesting.

    Maybe times are changing as Lipkin has mentioned b-cell abnormalities commonly found in auto immunity as well as other immune abnormalities could spurr researchers to start looking deeper or in our case just having a look would be good.

    What do others think??

    cheers!!!
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  2. natasa778

    natasa778 Senior Member

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    this more recent findings also links in

    http://blogs.nature.com/news/2012/0...-eppstein-barr-virus-in-ms-reinvigorated.html

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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wish they could better detect or test for active infection with ebv. As the authors have stated like many other people that ebv is infected in 90% of the population. They cant prove EBV plays apart but they cant disprove until they can test accurately if herpes viruses are actually active or not. Although this study did say it was still releasing chemicals that the immune system is reacting too, sounds abit like Dr Lerners work with EBV. More replication studies would be good.

    cheers!!!
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  4. natasa778

    natasa778 Senior Member

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    Actually testing for active infection would not be very useful if the mechanism above (or similar) is behind the pathology
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If the EBV is still releasing 'chemicals' i dont know if you could confidentally say it wasnt active. I dont think science really knows yet??
  6. natasa778

    natasa778 Senior Member

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    I meant active in the 'classic' sense, as in replicating and spreading etc.
  7. richvank

    richvank Senior Member

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    Hi, heaps.

    I think you are on the right track in raising the subject of immune deficiencies. I have been thinking along these same lines, for at least a subset of the ME/CFS population, and in fact, I posted about this yesterday. So, great minds....:)

    I think it will be important to distinguish between inherited immune deficiencies and immune dysfunctions that result from the pathophysiology of ME/CFS, after it has become established.

    There are several of the latter that have been identified, including low NK cell and CD8 cell cytotoxic activity, shift to Th2 immune response, continued activation of the RNaseL pathway and production of the low molecular weight RNaseL, constantly elevated cytokines, and others. I think that all of these can be accounted for by the GD-MCB vicious circle mechanism. But I think that the inherited immune deficiencies have not been sufficiently studied in PWMEs. I'm encouraged that several research groups are focusing on infectious pathogens and the immune system now.

    Best regards,

    Rich
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  8. Snow Leopard

    Snow Leopard Senior Member

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    On the other hand, a significant minority of patients however have never had an EBV infection (such as myself), I have tested negative on IgM, IgG, PCR multiple times (at least two different labs per test).

    The key is considering the similarities in the immune responses to the pathogens (and vaccinations) implicated in triggering CFS.

    I am also wondering about whether the body has developed an immune sensitivity to normal gut flora during the immune response to the virus. A response, to which the flora has some defences and combined with diminished NKc function, diminished innate immunity (due to the activated acquired immune system), this pattern of inflammation is never really resolved?
    There is a gut flora study being done that may bring insights into the role of bacteria in this disease.
  9. SOC

    SOC Moderator and Senior Member

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    It might be that any of several herpes viruses could be causing similar problems, not just EBV. HHV-6 acquired as an adult can produce an illness very, very similar to EBV Mononucleosis. Or it may be an immune response to any of those related pathogens. Or any number of other things, of course. ;)
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  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Snow leopard, ebv was one of the 3 initial infection i had that started the cfs thing for me, i even have some test results back then thatshould i tested positive to ebv with life long igg antibodies, now when i get tested i am negative, i just dont make antibodies to ebv, know one has been able to tell me why. WHen reading Oslers web, this was a common thing in the Lake Tahoe outbreaks as well?? Some of us just dont produce antibodies because of our whacky immune system.

    cheers!!
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  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Agree with you Rich, i think they have trouble studying us as they cant group us correctly as we all have different combinations of the abnormalities you have mentioned as well as different infections which affect different cytokines. Im in the nk cd8 group after my testing with PHANU. CD8 i think can have alot to do with ebv/cmv virus as these cd8 values have come down with me after being treated with antivirals, but not yet to normal levels????
  12. jeffrez

    jeffrez Senior Member

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    Great stuff, Heaps. Think things are pointing that way for me, anyway, with high EBV, HHV6, a couple of pneumonaies, and autoimmune hypothyroidism, with acquired low CD8 (I think from toxic exposure, that's when my white count crashed) & presumably low NK function, and the obvious tie-ins to HPAA dysfunction (constant infections take a massive toll) and glutathione depletion/mercury toxicity. Kind of amazing some of us are walking around at all, jeezus.

    Next week going to start ramping up on olive leaf, and also talk to doc about possibly doing Rituxan. I tried Viraclear EPs7630 last week (Pelargonium extract), don't know if it was a coincidence or not, but felt really bad those couple of days. Seems like that stuff might be pretty potent, surprisingly. I would have kept taking it, but can't afford to be worse now with a few things coming up, and also not too keen on the alcohol base. But if it is working, it might be a good sign that dealing with these infections is going to be the way to proceed. The Viraclear is relatively pricey compared to olive leaf, so I was thinking of cycling them, maybe something like 3 weeks on OL, 1 on VC, etc. Anyway, just some of the things I've been thinking about lately, and this paper seems to fit right in, thx.
  13. SOC

    SOC Moderator and Senior Member

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    Sounds like me. :) EBV, HHV-6, C. pneumonia, Coxsackie B, Parvo B19, hypothyroidism, and low CD8. When I was tested I had high normal NK cell function and high CD4 numbers, though. That might be because of some supplements I had been taking or it might be that's just the way my immune system rolls. ;)

    Have you considered antivirals? They did a lot for me (and my daughter, and my uncle).
  14. jeffrez

    jeffrez Senior Member

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    Definitely considering antivirals. Glad to hear they helped all of you - many people with ME/CFS seem to benefit from them, some even dramatically. As I'm sure you know. ;-)

    Thought I would give the naturals a go first to see how they might work. Even if they're not strong enough, was thinking they might knock some of the infections back enough for pharm antivirals to be more effective at lower doses. Maybe that's a pipe dream, but I still want to keep my liver around as long as possible. ;-)
  15. SOC

    SOC Moderator and Senior Member

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    There's a lot to be said for setting yourself up to get the most out of the antivirals. :) Definitely want to keep that liver healthy! You've probably already done it, but if you haven't, you might want to try a methylation protocol before pharm antivirals, too.

    Good luck!
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  16. aquariusgirl

    aquariusgirl Senior Member

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    soc: did u have high normal NK cells AFTER 2 yrs of valcyte? were they in the tank before that treatment? thanks.
  17. SOC

    SOC Moderator and Senior Member

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    Yes, but since I didn't have immune testing before Valcyte, I can't say anything about whether Valcyte had any impact on my immune function.
  18. aquariusgirl

    aquariusgirl Senior Member

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    i c.. thank u.. that makes sense..
  19. Daffodil

    Daffodil Senior Member

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    i have never heard of EBV releasing chemicals but being latent..this is very interesting indeed.

    it might also explain why gcmaf helps even when antivirals might not...?

    what i dont understand is...why doesnt long term acyclovir help most people? i read a recent study showing that even latent EBV decreases with acyclovir and that many scientists think that long term acyclovir could even eliminate the virus entirely from the body!

    perhaps gcmaf + acyclovir, which is what many are trying. ha. my fog is so bad maybe nothing of what i have typed even makes sense.

    the gut flora situation.....this could be a key player as well. i am very glad that they can test now for anaerobic bacteria in the gut....although this is the first generation of tests of this kind.
  20. MishMash

    MishMash *****

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    Stomping out the EBV with antivirals is a waste of time. It is a product of a much larger phenomenon. Probably an inherited autoimmune condition. It's very disconcerting that we can't just find a way to kill a bug, like the HIV/AIDS people did. Our problem is way deeper than that.

    Dr. Montoya sounds like a well-meaning man, but he's wasting valuable time and money giving patients Valcyte. It's isn't going to work. He claims to have found success with this treatments. I would like to see some that replicated.

    I was tested for reactivated EBV back in the early nineties. It was completely negative. I went on a many-month cycle of antibiotics, which totally screwed up my gut, and I developed a bad case of IBS.

    But what do you know: my EBV results came back reactivated after developing the gut condition. I also tested positive for HHV-6 and Q-virus. Basically, you can take any genetically predisposed "pre-CFS" patient, and make them show reactivated EBV simply by putting enough inflammatory stress on their system. That's what happened to me.

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