montoya valcyte hhv6

Discussion in 'Fibromyalgia Main Forum' started by heapsreal, Oct 11, 2009.

  1. heapsreal

    heapsreal New Member

    Tried to find a previous post on montoya and the valcyte study so i could bump it to the top.
    Has anyone heard anything of it? Wondering how or if it fits into the new xmrv info out at the moment.

    EBV hhv6 cmv seem to be opportunistic infections when reading about xmrv, but some have been cured by antivirals and lowering antibodies to these herpees viruses. Maybe another sub group too. Another dam virus, lol. Hoefully this will legitimize this disease.

    So will this new study help speed up access to ampligen??

  2. sascha

    sascha Member

    i didn't qualify for his research study because i tested negative for EBV. he said i tested the highest for HHV6 of anyone he'd ever seen (over 10,000), and i was high for CMV1, i think it was.

    many cfids people don't have these viruses, which is why the XMRV findings are so spectacular and significant-- almost EVERYONE with cfids has evidence of either active XMRV or of having had it. that's why this news is so big for us cfid'ers.

    i recently saw Dr. Montoya (but it was just before XMRV news broke). the valcyte treatment did bring my HHV6 way down, plus the other active virus tested for. i got the same benefits many other people on the treatment got- but as i told Dr. M- it wasn't the whole story (the valcyte) in taking care of my cfids problems, as i am still very weak and have extremely low energy and functioning power. my cognitive functioning returned. i recover better now from exertion following rest. i don't ache all over anymore except when i over-exert (and that doesn't take much). and my orthostatic intolerance is greatly reduced. i'm glad i did this treatment.

    i think what you said about XMRV legitimizing the disease is a major point.

    these are exciting times- i hope beyond hope we will not be disappointed in the MXRV findings. Sascha
  3. jasminetee

    jasminetee Member

    That's great Sascha and good to see you. :)

    As for HHV6 I heard researchers say that HHV6 acts synergistically with HIV to make AIDS patients even sicker.

    [This Message was Edited on 10/12/2009]
  4. heapsreal

    heapsreal New Member

    I have had good improvement with famvir going from a 4 to an 8, but always want more, lol, insomnia still an issue. This retrovirus maybe the thing thats stopping alot of us on antivirals feeling a 10. Interesting that they are mentioning lymphocyte sub sets like cd4 cd8 lymphocytes with XRMV, which have always been elevated with me and have come down on famvir, but not normal yet. My doc suspected ebv reactication from these tests, this maybe caused from XRMV.

    Maybe a retroviral drug with antivirals may be the answer, or abx if bacterial co-infection.