ebv/hhv6 stanford study

Discussion in 'Fibromyalgia Main Forum' started by lisagra, Nov 17, 2006.

  1. lisagra

    lisagra New Member

    i've been sick for the pt 2 yrs. tried treating w/lt abx and saw no improvement.

    now exploring the stanford anti-viral approach...valcyte.

    my ebv was 2851!!!!!! 2000x higher than range.
    my hhv-6 was also way out of range.

    anyone seen success just using anti-virals.

    am i really this SICK from these viruses!!!!

    today has been a tough dy. i'm just really really sad about having lost the last 2.5 yrs of my life.

    thanks for any and all advice
  2. Slayadragon

    Slayadragon New Member

    There are a few of us who are experimenting with anti-virals at the moment. fight4acure has used valtrex with some success. Jolie is currently using Valtrex and posting about her results. I've just started Famvir and have a post going. Mikie was on Famvir for a while but now is pulsing with transfer factors. Tam used acyclovir for a short while but flamed out (perhaps because the dose was two high). You can read about this on my post and on Jolie's.

    I've not seen anyone here using Valcyte, although my doctor may prescribe it for me if the Famvir is not sufficient. He's been using Famvir for a while with good results, but after talking with Dr. Montoya from Stanford has been using Valcyte on number of patients as well. His results (just since mid-summer) have been good so far with a dozen or two patients, he told me about six weeks ago.

    I am hoping we can continue to share information, since I am finding it very helpful to find out how other people are doing.

  3. mrdad

    mrdad New Member

    I'm out here on the "left Coast" in S.F. and I had a met
    a Gentleman who was in the process of bring treated with
    Valcyte with encouraging success! I understood some mos.
    ago that his Doctor Montoya at Stanford was in the process
    of creating a study in that direction. Have you perchance
    heard anything about it?

    Thank You,
    JOE aka MRDAD
  4. Slayadragon

    Slayadragon New Member

    It was pretty widely reported in the media (mainstream media!) that Dr. Montoya presented a paper in Spain with a small-scale study (something like a dozen patients). These were people who were totally bedridden but were leading basicaally normal lives within a year. I think his success rate in this small study was really high....maybe 10 out of the 12 patients?

    My doctor talked to Dr. Montoya and has begun prescribing Valcyte for some people too. He said early results were good. I'm going back to see him in early January and ask for the status.

    I'd imagine Dr. Montoya is doing a broader study now, but I don't know anything about it. It seems to me that there are a lot of subcategories of CFS patients, and so probably he is very choosy about who he lets in.

    When I find out more info, I certainly will post. Please let me know if you have any further info also.
  5. lisagra

    lisagra New Member

    i will continue to follow your progress. i have apppled for the stanford study. so will keep you posted as things progress.

    tx lisa
  6. cherylsue

    cherylsue Member

    Ampligen is undergoing Clincal Phase III trials and is currently undergoing FDA approval. Look for it in the next 3-5 years.

    I've had good look with ProBoost sold here at ProHealth. Small clinical studies have been done on this, took with evidence of it reducing EBV titers.

    One may have several viruses that can't even be tested. I really think reducing our viral load is the key for most of us to feel better.

  7. mrdad

    mrdad New Member

    Any info. we can accumulate is helpful even if it elimi-
    nates some things. We shall keep one another aprized!

    Thanks again!
  8. Mikie

    Mikie Moderator

    I got a huge improvement from taking Famvir for about 1 1/2 years, pulsing it toward the end. I think once the viral loads are down, it can be good to switch to transfer factors. The TF 200, which now goes by a different number--customer service can tell you which one it now is, targets both strains of the HHV-6. Antivirals aren't very effective against HHV-6 but the TF's do work against it.

    I took both the TF C and TF 200 and they worked even better than the Famvir.

    Go to the HEMEX Lab website and read about hypercoagulation. It often accompanies chronic infections. There is a panel of tests for it, the ISAC panel. There is a lot of good info on this on the website. I did Heparin injections to get rid of the extra fibrin in my blood where pathogns had been hiding out. It improved my circulation too. Another bonus is that Heparin is an immune system modulator.

    Good luck to you.

    Love, Mikie
  9. lisagra

    lisagra New Member

    StanfordTrial at hh-v6foundation.org
  10. lisagra

    lisagra New Member

    stanford montoya hh-v6 valcyte cfids