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Currently ill on valtrex - thinking of switching to famvir.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by nofuture, Oct 8, 2013.

  1. vamah

    vamah Senior Member

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    Your hhv6 results are in a different format than mine were, but it does look like the IgG antibodies are high. The same with ebv. This makes you a good candidate for the Montoya valcyte protocol.

    I think. Like I said, the tests I had and which are used by Montoya use a different range. For example, for hhv6, less than 1:80 is normal. 1:320 qualifies for valcyte treatment.
  2. SOC

    SOC Moderator and Senior Member

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    At first glance, your HHV-6 titres don't look high enough for most docs to be willing to prescribe Valcyte. Most docs are afraid of using this potentially dangerous med. The fact that it can be safe if used properly rarely reassures them. Unless your CMV titres come back really high (and maybe not even then), I doubt your local doc will want to prescribe Valcyte.

    Famvir might be an option your doc will consider and might be sufficient if your HHV-6 is relatively recent and relatively mild. heapsreal might be able to tell you more about Famvir for use with beta herpesviruses (CMV, HHV-6) since he's taken it with some success.

    Since you're in MI, another option would be to see Dr Lerner who is a long time prescriber of Valcyte for CMV and EBV in ME/CFS. He has loads of experience and is not afraid of the med.
  3. nofuture

    nofuture

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    If it comes down to it I will see Dr. Lerner. I will be persistent enough to get my doc to prescribe it because at this point I have nothing to lose. Whats helping me during this time of tribulation is grapefruit seed extract along with famvir. Otherwise I'm useless.
  4. Christopher

    Christopher Senior Member

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    I think it is silly to go strictly by antibodies when HHV6 is known to interfere with normal functioning of the immune system.

    Were you tests done through regular Quest or through Quest's Focus lab?

  5. SOC

    SOC Moderator and Senior Member

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    Good point about testing. HHV-6 testing is notoriously unreliable. nofuture, you might want to take this info from the HHV-6 Foundation about HHV-6 testing to you local doc and see if you can get a more accurate test done.

    It's also true that some PWME have IgG and IgM deficiencies so the usual antibody titres, which measure IgG and IgM antibodies to specific infections, may not be reliable.
  6. nofuture

    nofuture

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    I think regular. It said "quest diagnostics." At this point I will see Dr. Lerner as SOC said he will not prescribe the Valcyte and im not going to go by that. I'm wondering how much the first office visit will be anyone have any ball park figures?
  7. SOC

    SOC Moderator and Senior Member

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    Can't give you a number, but I remember he's relatively cheap -- compared to my local docs, at least. It's the testing the is the expensive part. If you have insurance, that should cover most of it.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also remember elevated cd8 t cells is also a good indication of active herpes viruses as well, might be worth getting and showing your doc as well as viral titres??
  9. nofuture

    nofuture

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    I have Aetna student insurance. It should work. How long did you have to wait to see him and get a prescription?
  10. SOC

    SOC Moderator and Senior Member

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    It's been a few years but iirc, we got in to see him in less than 2 months, which is quite short for ME/CFS specialists. Most ME/CFS specialist have wait times of 6 months to several years. You'll have to wait for your tests to come back before you get a prescription which could be another month.

    Nothing goes quickly with ME/CFS.
  11. SOC

    SOC Moderator and Senior Member

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    Yergh, I'm starting to feel like the real oddball -- high NK cell function, low CD8 T cells.... I don't seem to fit any of the patterns. ;)
    heapsreal likes this.
  12. nofuture

    nofuture

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    That is a crazy long time :ill:
  13. SOC

    SOC Moderator and Senior Member

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    Not in the ME/CFS world. Get used to it, my friend.
    OnlyInDreams likes this.
  14. nofuture

    nofuture

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    Thanks for the encouragement. My concern is this. Lets say I see improvment on famvir. Is valcyte the only way to get through with full remission? Or is famvir equally effective ? Im talking long term. Say a year from now?
  15. vamah

    vamah Senior Member

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    I think if something is working for you, you should stick with it. Your hhv6 levels may be low enough that famvir can keep it in check.
  16. SOC

    SOC Moderator and Senior Member

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    There is no way to know. The evidence simply doesn't exist to have any certainty about the outcome of any available treatment in ME/CFS. We're all gambling to greater and lesser degrees.

    Here's the best I can give you -- if it was my child, or myself, I'd go for the Valcyte. That's the med that has the proven track record for CMV (and HHV-6 by association). I would not bet the house on a full remission. Full remissions are rare in ME/CFS. However, you are in a better position than most of us to be one who does get a remission because you are young and early in the illness. I wouldn't throw away that opportunity by using anything but the best available treatment.

    That is just my opinion, though. There are many other opinions on the matter.
    OnlyInDreams likes this.
  17. nofuture

    nofuture

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    Ya I will be seeing Dr. Lerner Nov 8th. That should get the ball rolling. Im thinking that I might get to recovery in less than a year at the rate things are going. Time will tell.
    Week 2 on famvir update: 5/7 days felt fantastic 2/7 so so- not as bad as before
    Felt pretty good . I don't crash as hard. Some days are horrible , most are good.
    -Much better recovery
    - I can see I am starting to lose weight
    -Appetite bouncing back.
    - I feel its good for lowering my viral load
    -Lots of phloem came out.
    heapsreal likes this.
  18. nofuture

    nofuture

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    Week 3 on famvir update: Energy 6/10:
    -slept a lot
    - literally feel i'm living off this pill
    - if certain amount of hours pass i crash if i don't take it
    - I know the famvir is working but i'm concerned that when my system uses it up my body will go back to more fatigue
    -old symptoms returning

    The 8th is getting closer
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i may have missed it, but what dose you on?
  20. nofuture

    nofuture

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    @heapsreal Im taking 1.5 grams 4x Daily. Just got that extended 1 more month to cover until the 22nd which should be when i will get Dr. Lerner's prescription for valcyte.

    -At the moment its too soon to tell. Im making progress overall but still crashing. B12 is helping with fatigue.
    - Another thing that is similar to you is that I do crash even if i just miss a dose without waiting a day, rather than waiting a long time to crash. Which gets me thinking that i know its doing its job, but is it enough for remission long term.
    based on the results of the labs:

    HHV6
    IgG 1:32
    IgM 1:20

    The hhv6 is high should be ~ 1:80

    New Cmv results
    IgG & IgM <0.90

    - I was mad there was no specific number for this. But retesting will let me know.

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