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Is Brivudine an option for suspected EBV-induced CFS?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Wonkmonk, Jun 15, 2017.

  1. Wonkmonk

    Wonkmonk Senior Member

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    Hi everyone,

    my doctor and I have the strong suspicion that my CFS is caused by Epstein-Barr-Virus because I have elevated EBV-EA titers and I had a pretty good response to Valacyclovir in the first 4 months according to Dr Lerner's treatment protocol.

    Sadly, I had to stop because there was a developing kidney problem (GFR down to 65), so now I'm looking for alternative drugs that are active against EBV.

    Famciclovir, the 2nd-line treatment option, is expensive and difficult to source in my country.

    I found one study that says that Brivudine has good effectiveness against EBV and is also well tolerated:

    http://onlinelibrary.wiley.com/doi/10.1111/j.1432-2277.2009.01045.x/full

    But I didn't find any studies that used it against CFS. Dr Lerner also doesn't mention it as an alternative. It seems no one has really tried.

    Could it be an option? Are there any experiences here in the community?

    I look forward to hear your opinions!
     
    Hip and Knockknock like this.
  2. Knockknock

    Knockknock

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    Hi there, even though some theories don't use valtrex for other viruses like cmv or hhv6, valtrex valacyclovir still a potent antiviral and its selective against EBV, but also and interesting late studies have proof that can reduce viral load in HIV,,, even though its not a retroviral drug, as i have posted before to me there is a very close relation btwn this herpes viruses and retroviruses.
    i'm strong believer that the core of me/cfs is a retroviral infection causing gene mutation, body's methyliation, this cause a total body's desrruption, as result detox passways, Rnase L antiviral, cytotoxic use by the nk cells to kill viruses and cancer cells, hormone one thing lead to another making what me/cfs ...a multisystemic disease.
    before you switch drugs have you check for other posible active viruses ???
     
    heapsreal likes this.
  3. Wonkmonk

    Wonkmonk Senior Member

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    Thanks a lot for your suggestion. If I understood correctly, your point is that the real culprit might not be EBV but some other retrovirus and that Valacyclovir helps because it kills both EBV but also that retrovirus and that therefore I should stick to Valacyclovir.

    Perhaps I should clarify: I want to continue Valacyclovir, but can't because I suffered acute renal injury, sadly also on a lower dose.

    So sadly, I have no other choice. I have to switch to another drug, and Famciclovir is difficult to get in Germany. I then found Brivudine as a possible alternative and I am now wondering if it is safe and effective against EBV (which I still think is the reason for my CFS).

    The main caveat I found so far is that in the patient information, Brivudine is not recommended for long-term use because it might increase the likelihood of hepatitis. I don't know how serious that concern is, though.
     
    Knockknock likes this.
  4. Knockknock

    Knockknock

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    totally understood, most of this antivirals are dangerous for liver and kidney.
    i don't know much of brevudine, on valtrex( valacyclovir still, i just did my routine lab few days ago lets see how they are.
    I have gotten better on valtrex but i think adding something else will help more, i have been considering Raltegravir( insetress for a while, i think i'm gona go for it, there have been some studies that's raltegravir may inhibit replication block the enzemes use by most of this herpes viruses to replicate.
    it has retroviral and antiviral action.
    most of this herpes share a lot of things in comun.
    Im not suggesting you or anyone to use any drug.
    im gona ask my doctor about that drug you are intending to use.
     
    Wonkmonk likes this.
  5. Wonkmonk

    Wonkmonk Senior Member

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    Thanks for this suggestion, that's indeed very interesting, I googled a bit and it seems raltegravir is indeed at least under serious consideration for treating EBV and MS. And if it's also knockknocking out other viruses that may be present, it's even better.

    At the dosis recommended for HIV, it would cost €900 (~$1000) per month in my country, so that would be about the same I am currently paying for Valacyclovir. It also appears to be well-tolerated.

    Feels so good to have some more options, so one doesn't lose hope.

    It would be great if you could ask your doctor about Brivudine.

    Of course, I understand neither you nor anyone is recommending or suggesting that I use these drugs and if I decide to use them, the decision and responsibility will be mine alone.
     
    Knockknock likes this.
  6. Wonkmonk

    Wonkmonk Senior Member

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    Oh, and what retrovirus would you suggest I should test?

    Right now, my doctor and I are focused solely on EBV because the tests and good response to Valacyclovir make a lot of sense, but of course there is always the possibility that we have been missing something.
     
    Knockknock likes this.
  7. Wonkmonk

    Wonkmonk Senior Member

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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I didnt think brivudine was through its approval
    Process.
    Famvir im sure u could find reasonably priced online.

    Another option to ask your dr is a lower dose of famvir with probenicid. Probenicid is a gout med often combined with antibiitics to increase the drugs blood level and half life. Its known to do the same with antivirals like famvir. Another option to make famvir more affordable.
     
  9. Wonkmonk

    Wonkmonk Senior Member

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    I can get Brivudine in Germany from my local pharmacy (brand names are "Zostex" or "Zerpex"). Perhaps it is not approved in the US or UK, but here, it is definitely available.

    Yes, I got some tips in my other thread where I can get cheaper Famciclovir, but it would have to be from abroad, and I am still a bit sceptical about buying from non-licensed online pharmacies (although it seems to go really well for some people who tried).

    The probenecid option is actually mentioned in Dr Lerner's paper, but only with Valacyclovir. My understanding was it doesn't work so well with Famvir, because it is metabolized in the liver, not directly excreted through the kidney like Valacyclovir. I'm also quite certain, my doc wouldn't be happy to add a 3rd drug to the mix. She talks about stopping the antivirals or reducing the dose all the time and I have a hard time to convince her to continue. But if all else fails, of course, I'd try.
     
  10. Knockknock

    Knockknock

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    unfortunable the retroviruses associated with Me/cfs was dismissed as a lan contaminant, the test is not aveilable anymore , but for sure there is one out there causing us to have CFS..
    my theorie is by treating this herpes viruses with antivirals we are having a double action on reducing the viral load of the unknow( retrovirus we may be carring)
     
  11. Wonkmonk

    Wonkmonk Senior Member

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    As long as it works, fine with me :)
     
    Knockknock likes this.

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