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Antiretroviral Trial

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, May 29, 2010.

  1. Charles555nc

    Charles555nc Senior Member

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    NK cell function, i know the quote wasnt exactly on point in my last post, but it clearly gives the middle finger to quest labs, as kinda unreliable.
     
  2. Daffodil

    Daffodil Senior Member

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    i received some lab test results which i don't really understand. the last time, i had a cytokine panel done at UNVEX and the TNF-a came back as 4559.7 with normal being <27. this time, i had the TNF-a tested at Quest Labs and it came back as "<1.0" with normal being 1.2 - 15.3. so in april it was through the roof and now its too low??? makes no sense. i left a message at UNVEX for someone to call me back.

    my HV6 IgG antibodies came back as 1:640 with reference range <1:10.

    my IgG subclasses were all normal.

    i am waiting for the t-cell gene rearrangements.

    this cost us $1300 and i found out nothing so far. i just am so upset and feel like i will end up on the street with all the money i am spending. and after everything, i am still sick.
     
  3. undcvr

    undcvr Senior Member

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    HHV6 1:640 is high and an active infection. It explains alot about what you are going through. The Vistide may need more time to bring that level down. I took at least 6 months.
     
  4. Daffodil

    Daffodil Senior Member

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    und. ....if it is hhv6 at fault, why didnt 3 years of valtrex and valcyte work for me?

    it is so interesting that high dose valcyte is working for you. ughh i dont understand this!
     
  5. Charles555nc

    Charles555nc Senior Member

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    I did valcyte for 3 months and valtrex for 3 months,

    And my titers for hhv6 were high too recently.
     
  6. undcvr

    undcvr Senior Member

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    There was always a chance that Valtrex and Valcyte might not work. If I remember correctly Montoya had ppl in his study that did not respond to it even with high HHV6 titers that was why they always left the option for Vistide open. Did you even try Valcyte at the very high dose ? If you took the low dose of the Valcyte for an extended period of time did the HHV6 become resistant to it ? We don't know. I even suspected you of having chromosomally integrated HHV6 but your results seem inconsistent with that but it is still HHV6 that is at fault. Do you know how long it took to bring down my HHV6 by half, at least 6 months !

    I cannot imagine what you are feeling with such high levels of HHV6. It was already unbearable for me at my levels.

    Valcyte Never worked for me unless it was at the highest allowed dose.

    3 months of anything is too short a time for therapy of this kind of illness.

    You are on the rite track Daff, if you have tested neg to everything else (except RVs which you can't really prove anyway at this point) the next best option is to take out the HHV6 and stop it from making the hole in your immune system that is letting everything else in.
     
  7. Daffodil

    Daffodil Senior Member

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    thanks guys. its only been barely 2 months yet....i need to learn how to be patient..ughhhh it took 6 months for me to feel a little better on vaclyte too. ive just been sick so long ....

    i guess i will have to send my blood to nevada for the cytokiine profile in a month cuz there is no other way to compare anything. one person who said they got well on vistide, said their cytokine changes correlated with how they felt...
     
  8. undcvr

    undcvr Senior Member

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    You are on the rite track Daff, trust me. You have mentioned way high HHV6 titers on this thread a few times before but just blew it off. I mentioned it to you before, those are high values. If you can get at the HHV6 it will be just as effective at treating whatever RV you might have. Many of us here have gotten better on AV drugs alone, not ARVs.

    I won't lie to you though but from what I have read and experienced even on the right therapy it will take years to eradicate, not months. Mentally you have to prepare yourself for that. This isn't a fair illness. You may think that just because you have been sick for so long that once you find the cause you and proper treatment that you should be cured of it rite away. It doesn't work like that. It isn't fair

    My suggestion is that in order to save cost you test for Vistide specific side effects only and not on other stuff. Just the usual ones at commercial labs. Don't bother testing for the rest of them because if the Vistide works then you will start to feel better and those profiles will start to look better naturally. But again treat your hypercoagulation.
     
  9. Charles555nc

    Charles555nc Senior Member

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    Got my Nexavir prescription, interesting info, basically my understanding of XMRV is that it infects b cells unlike HIV that infects t cells.

    http://www.ncbi.nlm.nih.gov/pubmed/8797033

    "Nexavir/Kutapressin has the potential to block EBV-induced immortalization of B-lymphocytes"

    So you get Xrmv that infects b cells, and latent epstein barr and hhv6 reactivate and "immortalize" infected b- lymphocytes- which makes everything worse/chronic?
     
  10. Daffodil

    Daffodil Senior Member

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    sounds good in theory. wonder if xmrv will turn out to be it afterall....it wouoldnt surprise me too much
     
  11. Charles555nc

    Charles555nc Senior Member

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    xmrv or xmrv mutant, yeah I wouldnt be surprised either.

    Ebv and hhv6 seem like they are always there too.
     
  12. Daffodil

    Daffodil Senior Member

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    i think dr. mikovits is right in that the retrovirus infects the same cells as the herpes viruses, which would explain why antiherpes drugs work in about 70% of cases - they kill the same cells where the retrovoris is. maybe the other 30%, (like me?) dont have concurrent active herpes virus infections...

    time will tell. but as of right now, i feel incredibly awful in my head.
     
  13. undcvr

    undcvr Senior Member

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    But Antiherpes drugs don't kill cells though, they only stop viral replication. Antiherpes drugs stop herpesvirus from replicating. It's your immune system that eventually recognises them and kills. Some AV and ARVs directly stimulate the immune system as well.
     
  14. Charles555nc

    Charles555nc Senior Member

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    Anyone here tried alpha interferon? Im trying to get it prescribed. Ive read reports of some recovering using it.

    If things get bad enough, daffodil, u should try the Alpha Lipic Acid, Edta, and tindamax Im on. Given me a bit of my humanity back.
     
  15. Daffodil

    Daffodil Senior Member

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    yes alpha lipoic acid..thats what i needed to buy! dang.

    i would take alpha interferon in a second.
     
  16. Tristen

    Tristen Senior Member

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    I'm really curious about this too. I see conflicting info and opinions on the use of IFN (Interferon) for me/cfs. Dr Chia uses it for EV's with some success. Others feel supercharging our immune systems with IFN could be dangerous.

    I know a few people with me/cfs who also happen to have hcv. They treated with this drug and both reported the same thing. They felt better while on it (which baffled all the docs because the drug has brutal side effects), but then relapsed into worse me/cfs after stopping the drug. The Interferon caused a major exacerbation of their me/cfs. But this is obviously unusable information since they had other co-morbid diseases.

    I hope more chime in on this one. I do have access to this treatment, but without some very credible evidence of safety and efficacy when used for me/cfs, I won't go near the stuff.
     
  17. Daffodil

    Daffodil Senior Member

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    charles..do you know how much alpha lipoic acid we are supposed to take?'
    thanks!
     
  18. Charles555nc

    Charles555nc Senior Member

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    I take 100 mg once every 3 or 4 days, but I take the alpha lipoic acid and the edta together. They seem to work twice as good as together as seperately.
     
  19. Daffodil

    Daffodil Senior Member

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    thanks:) .................
     
  20. Charles555nc

    Charles555nc Senior Member

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    Anything over 100mg will start to pull mercury out of your body faster than your body can get rid of it. Andy Cutler uses ALA to chelate mercury in autistic children. So its a great supplement, but dont over do it. If you start to take ALA everyday, you might want to add in zinc too.
     

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