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XMRV testing and Valcyte & Famciclovir

Discussion in 'XMRV Testing, Treatment and Transmission' started by stefie, Aug 17, 2010.

  1. stefie

    stefie

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    Hi I am new to the site and this is my first post so may not be doing things correctly

    My question is to anyone who has had XMRV testing done. Were any of you on Valcyte and/or Famciclovir? I just sent in blood work for testing and I am getting conflicting info from the lab and drs in the know about how accurate the testing is, if you are taking antivirals (not antiretrovirals). I decided to proceed with the culture anyway and see what happens. If it is negative, I will have the serology test done. Since the culture takes 4-6 weeks, hopefully the serology test will be out by then. The feedback I am getting is that the serology testing does not give as many positive results as the culture does.

    I have been on Valcyte and Famciclovir for about 18 months and at first had a fairly good response at about 6 month. (CMV titers went from 276 down to 100) Then at Christmas I went thru some fairly intense stress and bottomed out again - down to 10 - 20. Slowly I have made it up to about 30 but now have stalled and just bouncing up and down between 20 and 30. Titers are still around 190. Also have EBV but those titers are so-so. I know this story sound familiar to so many.

    Thanks
     
  2. August59

    August59 Daughters High School Graduation

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    Unfortunately I haven't had the XMRV testing done, but I sure am ready for it. I say that because of my strong/high EBV titers as well with high HHV-6 titer. CMV was negative at the time though, but everyone seems to very different. I took Valcyte for about 3 months and my thyroid started acting up so I stopped the Valcyte while we are trying to stabilize the thyroid. I'm ready to start back on the Valcyte to see what it will do. I also have been taking probiotics, enzymes along with Nattokinase or Lumbrokinase to get my gut in as good of shape and hopefully breakdown any biofilms that may have developed in the gut overtime. Hopefully this will allow the Valcyte to work at it's maximum capability. We shall see!!
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    hi stefie, how long have u been on famvir for?? and how much has it helped u? I improved alot with famvir over a 12 month period then changed to valtrex for 6 months where i went backwards, now back on famvir and slowly improving. I think famvir has a very broad range of effect and have read where it has an effect on retroviruses as well as hepitis and other herpes infections, so theres probably other infections it works against. Famvir doesnt seem as popular as valtrex or valcyte,why i dont know as it seems to be quite a good drug for us.
     
  4. ukxmrv

    ukxmrv Senior Member

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    I was advised by the WPI that I didn't need to come off Valtrex for the XMRV test, although I got mixed messages from VIP dx. I can't remember if I stopped altogther or just stopped for a few days before the test.

    XMRV+
     
  5. stefie

    stefie

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    Northern California
    stefie

    I first tried valtrex but my stomach was not able to tolerate it. switched after 1 month to famvir and have been on it for 18 months. valcyte for 17 months. I am very discouraged that we can't get my titers down and energy level up. I am just concerned that the antivirals will give me a false negative on the prc test. The tissue cell line test is not available to the public yet.
     
  6. stefie

    stefie

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    When did you send the test in and have you heard back yet on the results?
     
  7. boomer

    boomer Senior Member

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    Stefie, although you say the famvir and valcyte did not help your energy levels that much, did you get improvements with pain and in other areas? How long did it take before you noticed anything? thanks.
     
  8. Daffodil

    Daffodil Senior Member

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    i took valcyte+valtrex for 3 yrs with no sustained improvement at all. it was dr. lerner's protocol.

    i heard that the drugs would not affect the XMRV tests.....but valtrex made my RNase L come down so i am not sure....

    sue
     
  9. nventor

    nventor

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    Sue,
    Have you tried Imunovir and Famvir?
    roger
     
  10. Klmrav

    Klmrav

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    Valtrex

    I have been on valtrex for 9 mos. Past 6 mos, up from 500mg to 1gram/day. I tested XMRV negative on the culture in June. I'm hoping to get serology test done...waiting for a letter from WPI for direction. I read here that the new serology test will be performed for no charge for those who tested neg on culture. I'm hoping that is the case. I am also on azithromycin, mepron and wormwood for chronic lyme/babesia.

    Karen
     
  11. Daffodil

    Daffodil Senior Member

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    nventor..i took immunovir for only a few days before i decided to try the HIV meds. after i started those, my doc wouldnt let me take anything else (he is not a CFS doc). i never tried famvir.

    ai am reluctant to try the antiherpetics again because i never had high titres to those viruses. i only did the lerner protocol because i didnt know what else to do and i thought that since my illness started with mono, it sounded reasonable. i did feel strongly i had a virus - just never expected it to be a retrovirus!

    of course, i havent yet tested positive for that or anything else...

    sue
    xoxo
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    hi sue, it would be interesting to see how u would respond to famvir, i think it seems to have a broader range of action then just herpes viruses. Theres info out there on how it helps people with hepatittis virus. I got no real effect from valtrex but famvir seems to be a good fit for me. I would also like to know where the women who wrote 'reviving the broken marrionette' got her info from that famvir has anti-retroviral effects.

    cheers!!!!
     

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