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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.
  12. Wonkmonk

    Wonkmonk Senior Member

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    Hello everyone,

    just in case you are interested in my judgement about Brivudine after a total of 8 weeks of trying it: I think it is not the right drug, at least for my sort of CFS (in which Valacyclovir seems to help a good deal).

    I am not sure if I got any better in those 8 weeks and in total I would even say that Brivudine made me worse.

    The good news: Lab tests always stayed ok and I always recovered after getting worse during the Brivudine trials.
    I also briefly (for 10 days) tried Brivudine plus Valacyclovir, but it was a very bad decision and I got considerably worse.

    I am currently trying to figure out if a too high a dose of Valacyclovir could be deleterious, and I don't mean in terms of the side effects of the drug but in terms of as a treatment for the CFS. I suspect that too high a dose of Valacyclovir can make the CFS or some aspects of it worse or stand in the way of recovery.

    After about 6 months of Valacyclovir at 6 grams a day (the dose Dr Lerner recommends for my weight), I realized that I didn't improve any further, so I thought that's because the dose wasn't high enough. Then I added probenecid to raise serum levels (as recommended by Dr Lerner), but I didn't get better and it even seemed I got worse.

    I now think maybe those are right who take doses in the 2-4 gram range for Valacyclovir.

    Or maybe Valacyclovir isn't the ideal drug, given that many people have made good experiences with Valcyte (Valgancyclovir) and it seems Dr Kogelnik and colleagues seem to use Valcyte in most of the cases, instead of Valacyclovir.

    So that's what I'm going to try next. Happy to be the guinea pig, will report if I can :)

    I hope writing it down here helps others make the best decision for themselves.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @Wonkmonk I was getting worried when you disappeared for six weeks! I got your PM and will reply as soon as I am able. I'm sorry about your recent worsening with your med trials and glad you are feeling better now (or at least hoping that is the case)?!
     
  14. Wonkmonk

    Wonkmonk Senior Member

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    I recovered a bit, but I realized that a lot of symptoms that were largely gone or at least significantly improved under Valacyclovir started to return after 4-5 days after stopped taking it and are now persisting and seem to be slowly getting worse while I still don't take any antiviral.

    This is interesting for several reasons:
    - After about 1 year of treatment (including the Brivudine, ~9 months Valacyclovir only), I definitly can't stop treatment and probably also can't taper
    - Getting better took 3-4 months for me under Valacyclovir (consistent with Dr Lerner's reports), but getting worse after stopping the antivirals goes pretty rapidly
    - Returning symptoms are the same as before I started Valacyclovir
    - I did lab tests for EBV EAD yesterday and wait for results - it was negative in the meantime under treatment. let's see if it is positive again now.

    There is of course no way to be sure, but the rapid onset of symptoms once I stopped antivirals in my view points to an infection as the reason for the symtoms rather than say an autoimmunity problem. Autoimmunity would be suspected to take a few months to get better under treatment (which was the case), but it should worsen much more gradually because autoantibodies would take much longer than a few days to be produced again (assuming the Valacyclovir somehow reduced them).

    On the other hand, a virus that is no more held in check due to antivirals can restart to multiply quickly in a matter of days, so that would be consistent with an infection.

    So I still think the herpesvirus infection hypothesis is the most reasonable path to follow at the moment. I was thinking maybe it is the case that two viruses are out of control (I had positive EBV EA plus 32,000 HSV1 IgG which is strange), so maybe the Valacyclovir is effective against one type, but not the other. I mean like having fleas and lice and just killing the lice helps, but only for some symptoms, and you need to remove them both. It might even be another herpesvirus that is new altogether (there are 8 known types infecting humans, maybe there are more); or it is another virus that responds to some degree to herpes virus antivirals (e.g. enterovirus?).

    Valcyte has a broader spectrum than Valacyclovir, so I think it makes sense to try it next. Let's see what happens.
     
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  15. Wonkmonk

    Wonkmonk Senior Member

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    I am convinced that antivirals are a very promising area for a subset of CFS patients. I think there is sufficient evidence.

    I am wondering if combining the right antivirals would be a breakthrough. I'll be careful with further trials because combining Valacyclovir with Brivudine was a bad thing to do, but no one has ever tried Valcyte/Isentress for example. Both seemed to help to some extent.

    I am NOT suggesting that anyone should do this or that I will do it because side effects would be a major concern in this combination. But maybe some combination of antivirals could help or even cure CFS for some people.

    Perhaps it's like Tuberculosis where you also need a combination of drugs and with HIV it's also the same.

    But again, no one should do this unless in an approved scientific study or at the direct recommendation of a knowledgable physician.
     
    Gingergrrl likes this.
  16. Learner1

    Learner1 Forum Support Assistant

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    I hope Valcyte is helpful to you. I've been on it for 7 months and it cleared my brain fog and my EVV PCR is negative. I was on Valtrex before but didn't notice much change.

    Liver and kidneys should be watched every 3 weeks. I take a lot of nutrient support and my kidneys have been ok - GFR from 72-90 where its been as low as 50 during mercury detox but as high as 110 since. My AST and ALT have been elevated, worse than when I did chemo, though they've been normal lately.
     
    Gingergrrl likes this.
  17. Wonkmonk

    Wonkmonk Senior Member

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    Thanks for the encouraging words, Learner.

    I am now having another idea: I had anti-streptolysin O (ASO) titers >300 two times over the last year (normal <200).

    ASO titers indicating adult rheumatic fever, according to Dr Lerner's treatment guidelines can prevent antiviral therapy from being effective. He writes that an ASO titre >400 warrants antibiotic treatment before starting Valtrex or Valcyte (p. 4):

    http://www.treatmentcenterforcfs.com/documents/mecfstreatmentresourceguideforpractitioners.pdf

    My highest ASO titre was 326, so it was below the threshold and we didn't do anything about it.

    But I am thinking, could a titre >300 also interfere with effectiveness of the antivirals?

    I have now tested my blood again for ASO and will see what happens, but if it is >300 again, I will likely give antibiotics a try before trying Valcyte.

    It's strange, but it really feels like Valtrex is the right drug for me, it just for some reason doesn't work to its full potential, and maybe some kind of streptococcal infection is responsible.

    The treatment is intravenous Ampicillin/Sublactam 3g, 2 times a day for 6 weeks. IV is a pain, but at least these antibiotics seem to have rather few side effects.
     
    Gingergrrl likes this.
  18. Wonkmonk

    Wonkmonk Senior Member

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    Lab tests are out. EBV EA IgG titre still positive, but very low (1:16). HSV-1 IgG still extremely high (>1:20,000, i.e. outside the range where the lab is still counting it) with no explanation. VZV IgG down by half (1:1100 - was 1:2400 last time, don't know if that has any meaning).

    All IgM negative, as they always were.

    I am CMV seronegative and HHV6 titer was low (1:32) in two separate measurements 2-3 months apart.

    That makes me question if a stronger antiviral (Valcyte) would really be helpful, because Valtrex should be effective for all the herpesviruses that I have except HHV6, but the HHV6 titre is very low.

    So maybe going after bacteria makes more sense...ASO titres will be interesting, hope I get them tomorrow or earlier next week.
     
    Gingergrrl likes this.
  19. Learner1

    Learner1 Forum Support Assistant

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    @Wonkmonk have you had any PCR tests done? They might help you figure out where you're at. My doctor kept me on Valcyte an extra 3 months after my labs looked better.

    Figuring out what your infections are and going after them is a good idea. I had a combo of bacterial and viral infections and it takes a coordinated strategy to beat them.

    As for autoimmunity, it can definitely be triggered by the infections. I'm on IV immunoglobulins both to boost my immunodeficiency as well as to try to reverse autoimmunity. Is that at all a possibility where you are?
     
    Gingergrrl likes this.
  20. Wonkmonk

    Wonkmonk Senior Member

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    I had EBV PCR tested because of the positive EBV EA. PCR came back negative. No other virus was tested with PCR because IgM antibodies were always negative.

    Autoimmunity is always a possibility one must consider, but I was tested for at least a dozen autoantibodies and they were all negative. Of course, it is always possible that another autoantibody that was not tested would be positive, but at present we do not have any evidence that autoimmunity plays any role in my CFS. That's why we are focusing on treating infections rather than trying IVIG or Rituximab.

    I don't rule out either treatment for the future, but with no evidence for autoimmunity at all, my doctors and I don't think it would be worth the risk and cost at this time, given that we have yet to try several therapy options for treating possible infections.

    May I ask which antibiotics you received and in what dose and how long? For the antivirals, it was Valcyte only, correct?

    Was the therapy successful? How would you describe your functioning today compared to before starting these treatments?
     

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