Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Any Use Taking Famcyclovir for a Long Time EBV sufferer?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by josephine2, Aug 29, 2017.

  1. josephine2

    josephine2

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    I have taken an antiviral in the past for elevated chronic EBV titers and did not recall relief.

    I am in a long relapse now so am willing to try Famciclovir. I've had elevated titers for 35+ years. I thought I was in a relapse of sxs of mycoplasma pneumonia but sxs have not responded to clarithromycin so I'm thinking this is viral. Throat is red as hell, exhausted, swollen glands -- the usual.

    Oldtimer sufferers -- is it worth it?
     
    Last edited: Aug 29, 2017
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  2. drob31

    drob31 Senior Member

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    I'm not sure if it will help in your case, but I'm eyeing famcyclovir to target EBV and HHV6 simutaneously. Furthermore I'm considering using lumbrokinase to help thin a "thicker" blood to make it easier for antivirals to reach the EBV in certain locations.

    One thing I've seen about acute infections, is that tagament or zantac will block EBV from targetting lymphocytes. It should get rid of the "sick" symptoms. It does this by blocking the receptors that EBV binds to, ironically a off label use for these specific antacids.
     
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  3. Wonkmonk

    Wonkmonk Senior Member

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    This was Dr Goldstein's hypothesis several decades ago. He reported mono patients recovering in a matter of days after they were given Ranitidine.

    Has anyone ever tried it for CFS/ME and was successful?
     
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  4. edawg81

    edawg81

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    I remember in one of Dr. Lerners videos talking about using zantac(?) to increase the area under the curve(?) and increase antiviral med levels in the body. He only mentioned this in his talks.

    Of note I did try famvir but it gave me headaches, so I switched to valtrex which I could tolerate a little better (still think it may contribute some 'wiredness')
     
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  5. Wonkmonk

    Wonkmonk Senior Member

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    That's correct, in his papers he also mentioned Cimetidine (not Ranitidine, though) and Probenecid as options to boost response rates of those who didn't respond properly after 6 months of treatment.

    But that's supposed to lower renal excretion of Aciclovir and as you correctly point out increase AUC. I think Dr Goldstein alludes to an (unknown) entirely different mechanism that works by taking Ranitidine alone, not in combination with Valtrex.
     
  6. Hip

    Hip Senior Member

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    It will take several months to begin see any results, and a couple of years to get the full benefits, at a dose of 1,000 mg of Famvir every six hours. See this post.
     
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  7. Hip

    Hip Senior Member

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    I was not aware Famvir targets HHV-6.
     
  8. drob31

    drob31 Senior Member

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    I've seen anecdotal posts that it does on here. Do you know what targets it that's mild?
     
  9. Wonkmonk

    Wonkmonk Senior Member

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  10. Hip

    Hip Senior Member

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    You could look at artesunate or Nexavir.
     
  11. Wally

    Wally Senior Member

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    @josephine2
    I have tried Famciclivor* on three separate occasions. Each time it took 10 weeks for the drug to make a significant impact on my symptoms. The improvement in my level of fatigue was very significant, as well as my cognitive function.

    Unfortunately each time I was on the drug I experienced side effects that resulted in my stopping the drug at about the 7 to 8 month mark. The dose I was on was 2 grams every 6 hrs. and I found that staying within a 30 minute window of the 6 hr. mark was very important to how I responded to the drug.

    I have had ME for over 25 years and I started on this drug treatment at the 20 year mark of my illness. So, at least for me the length of time being ill did not prevent the treatment from having a substantial impact on my most debilitating symptoms. During the course of my illness I have fluctuated between mild, moderate and severe levels.

    Each time I tried Famciclivor I was in a severe relapse, so it was quite remarkable to see that the drug was able to take me from bedbound to an almost manic like state of energy. Exciting to experience, but a little frightening for those around me because it was like a switch had been turned on and I was running on high octane fuel.

    If you have other questions you would like to ask me about my experience taking Famciclivor feel free to PM me.

    *I was prescribed the generic version of the drug manufactured in the U.S. by TEVA.
     
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  12. Wonkmonk

    Wonkmonk Senior Member

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    Did you try to substitute for another drug when you had to stop due to side effects?

    Valacyclovir or Brivudine would be reasonable options. Both worked for me in helping to reduce symptoms and maintain a certain level of recovery.

    All in all, I suspect Valacyclovir to be the most effective one (at least in my case) and also to have the best risk profile.

    Another drug that recent studies say has broad spectrum anti-herpes effect, probably including both EBV and HHV6 is Raltegravir (Isentress). (I so far didn't try it, though)
     
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  13. Wally

    Wally Senior Member

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    @Wonkmonk - I have not tried any other prescription antivirals. Weighing my options on what to try next or to give Famciclivor another try at lower dose. Valcyte, Valtrex, Ampligen, Rituximab, Vistide etc... are all on the list offered for me to try. I was very interested in the oral drug Brincidofovir that is currently in clinical trials for other illnesses. Unfortunately, it has not performed as anticipated in those trials, so it is not looking likely that the FDA will approve the drug anytime soon. (This is the drug that the military was interested in for smallpox and is the oral version of Vistide.)

    Also currently exploring treatment for SIBO to see if this needs to be addressed at the same time or before antiviral treatment is restarted. I did not know SIBO was an issue for me prior to trying Famciclivor, so antiviral treatment (at least prescription anti-virals) are on hold until I see if SIBO can be corrected. One round of Rifaximin did not do the trick, so looking at trying this again or other antibiotics or treatments.

    @josephine2 - Not sure if SIBO is an issue for you, but I know Dr. Lerner (who pioneered the protocol for Valcyte/Famciclivor/Valtrex) found that if the antiviral treatment did not work for his patients, he found that he needed to first go after any underlying bacterial infections. Perhaps an imbalance in the bacteria in the gut could also impede the effectiveness of antiviral treatment? At least something to think about, since the microbiome seems to play an important role in the ability of the immune system to control pathogens.
     
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  14. Wally

    Wally Senior Member

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    @Wonkmonk - I forgot to address your comment about Raltegravir (Isentress). Yes, I am also looking at this drug. I have heard that there are some ME patients who have experienced significant improvement in their symptoms using this drug,

    I appreciate your weighing in with your thoughts on Famciclivor vs. other drugs, so patients (who have issues with herpesviruses) can get current ideas on different viral directed drugs that they might be able to try.
     
  15. Wonkmonk

    Wonkmonk Senior Member

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    I think it's good to weigh all options, including Rituximab which is a much bigger risk to take.

    But from the fact that antivirals help so good in the first 7-8 months, my first thought was couldn't a similar drug be found that can be used after 8 months to sustain the recovery.

    I had the same problem with Valacyclovir after a few months I showed signs of beginning kidney failure. I then switched to Brivudine which is fully metabolized in the Liver and doesn't affect the kidneys at all, and it didn't cause any kidney problems, so I am using it until I can make another try with Valacyclovir.

    I have the feeling that Brivudine is effective at sustaining the recovery achieved with Valacyclovir (as far as it goes), but I think Valacyclovir is the more effective drug to further improve my recovery, so I try to switch back to it next week and hope the kidneys will hold a bit longer this time.

    My drop in GFR after Valacyclovir was entirely reversisble.
     

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