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Are there gentler/less toxic alternatives to Valcyte for HHV-6?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Sasha, Aug 18, 2013.

  1. Sasha

    Sasha Fine, thank you

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    I'm concerned about the cancer risk, particularly, of Valcyte, which is being considered for what might or might not be HHV-6 reactivation in me (I have a high - 1:1280 - IgG titre and although I have been negative by PCR in plasma twice, I understand that doesn't necessarily rule it out).

    I've been on hepapressin for about a year and haven't noticed any benefit, apart from perhaps an improvement in sleep early on. I wonder if that maybe indicates I don't have an HHV-6 active infection, or perhaps I'd have noticed a change.

    I'm wondering if there's anything less risky than Valcyte I can try? If I was certain I had active HHV-6 I'd go for Valcyte but high titres don't seem to distinguish between Valcyte responders and non-responders in the CFS literature and I'm very unsure about Valcyte because of the potential downsides.
     
  2. vamah

    vamah Senior Member

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    I have heard of people controling hhv6 with lysine and olive leaf extract. I think that may be more of a maintenance thing once the virus is under control, though. With titers as high as yours are ( mine were the same before starting valcyte) I don't know if that would help you much. I recently added lysine in addition to valcyte to see if it boosts my immune system as the valcyte hasn't brought the virus under control yet.
     
    Sasha likes this.
  3. SOC

    SOC Senior Member

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    If you think your high titre signifies a fairly recent (within several years) active infection, but not a currently active infection, then something like Valtrex will help keep hhv-6 latent while you recover. Valtrex is quite safe, as antivirals go. Many people have taken it for many, many years straight (for genital herpes) without problems.

    The best way to tell if you have an active hhv-6 infection is by symptoms. If you have cognitive dysfunction, muscle/joint aches, and crushing fatigue, then you probably have an active infection and need Valcyte. There are no guarantees on this, of course, just a rule of thumb. ;)
     
    Sasha likes this.
  4. jeffrez

    jeffrez Senior Member

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    Famvir supposedly, though not officially?
     
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  5. Sasha

    Sasha Fine, thank you

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    Thanks, SOC, you are always good value!

    I have cognitive dysfunction (that's for sure - it took me three goes to type 'cognitive' there!). No muscle aches, only ache in one joint for the last few months (in a six year relapse), have to spend a lot of time lying down but that could be delayed OI... so hard to know.

    I've heard people dismiss Valtrex for HHV-6 and so haven't looked into it. I hadn't realised it might be effective against a more feeble infection.
     
  6. SOC

    SOC Senior Member

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    Everybody (well, more than 99% of people) have latent HHV-6. It's not a big deal. Active HHV-6, on the other hand, can be nasty with a side of neurological. ;) The problem for a lot of us is that some immune dysfunction (for me it's low cytotoxic T cells, for others it's low NK cell function) prevents us from keeping HHV-6 latent. As long as the infection is latent, Valtrex should keep it there. However, Valtrex does next to nothing for an active infection, which is why we pooh-pooh it as a treatment.

    Daughter and I both took Valcyte for about 2 years and got a significant reduction in symptoms. Now we take Valtrex to keep EBV and HHV-6 latent. I'd absolutely go with Valcyte with your titre and significant cognitive dysfunction, but that's just my viewpoint. I understand why you might have a different one. :)
     
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  7. OnlyInDreams

    OnlyInDreams

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    SOC, Are you and your daughter still taking 4 grams of Valtrex daily? I talked to my doctor and he most likely will not prescribe Valtrex to me at that dose. I think the most he'll prescribe is 2 grams daily. Do you think that would be enough Valtrex to keep the CMV latent post-Valcyte? I'm going to rely on that and LDN post-valcyte..as well as the great one above.....
     
  8. SOC

    SOC Senior Member

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    We're still on the high dose, but I don't know that that's necessary for everyone. I really don't know if 2 g is enough, but honestly, I wouldn't have a problem trying only 2 g. I'd want to have my CMV titres checked in 3-6 months, though. If they're going up, I'd question the doctor why titres are going up if the infection is staying latent.
     
  9. vli

    vli

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    may I take this opportunity to ask where i can find authoritative sources on the toxicity of vistide vs valcyte? from months of reading here i got the feeling that they're about equally toxic but now i am not so sure. can anyone help?
     
  10. Sasha

    Sasha Fine, thank you

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    You might want to start a thread specifically with that question in the title, vli - people who know the answers probably won't be reading this thread. :)
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe the immune modulators like immunovir could be enough to supress the virus for you, maybe valtrex or famvir with an immune mod could help lower an active virus but the only way to know is to try it??
     
  12. Sasha

    Sasha Fine, thank you

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    Thanks - interesting.
     
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  13. drivel

    drivel

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    artemisia
     
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  14. lnester7

    lnester7 Seven

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    They have me on Famciclovir for it. Waiting on test results to see if numbers are coming donw!
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe try the artesunate with one of the other antivirals like famvir or valtrex as well as an immune modulator/nk stimulator like imunovir or inosine. its worth a shot. I dont think one would see results for several months with any type of treatment to lower viral load, so maybe best to get atleast 3 months worth of what u require to start your experiment and see what comes of it??
     
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  16. jimells

    jimells Senior Member

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    For me the decision to try Valcyte was pretty simple: even if Valcyte kills me, I wouldn't be losing much...
     
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  17. vamah

    vamah Senior Member

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    I made the same choice for a similar reason: if the valcyte doesn't kill me the disease certainly will.
     
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  18. yarnee

    yarnee

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    LOL I like that thinking
     

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