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EBV antibodies and antiviral response

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by PDXhausted, May 4, 2014.

  1. PDXhausted

    PDXhausted Senior Member

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    Has anyone with only high VCA IgG and EBNA IgG antibodies to EBV seen a positive response to EBV antivirals (eg Valtrex or Famvir)?

    I got my EBV results and was >8.0 on VCA IgG and >8.0 on EBNA, but negative on EA and VCA IgM, which is the pattern for past infection, although my results do seem elevated. I'm going to try Valtrex anyway because frankly I have nothing to lose, but was just hoping to hear some positive feedback.

    I'm still waiting to get my HHV6 results back. As I understand, Valcyte is usually the choice for elevated HHV6?
  2. SOC

    SOC Moderator and Senior Member

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    Yes, my antibody titres look like yours and Valtrex long term helps. I wouldn't say it's fast -- more like slow and steady.

    Valcyte is indeed the choice for HHV6 infection.
    heapsreal likes this.
  3. PDXhausted

    PDXhausted Senior Member

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    Thanks @SOC - I was curious about your antibodies because I thought I had remembered reading you were on Valtrex. Are you on more than 1g per day?
  4. SOC

    SOC Moderator and Senior Member

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    Yep. 4g per day. I don't know what the typical dose for chronic EBV in ME/CFS is. It might just be a matter of what works for a given patient. I think 1g daily is used for keeping HSV suppressed and may not be enough to knock back an active infection.
  5. PDXhausted

    PDXhausted Senior Member

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    Ok HHV6 came back at 1:320... Going off topic on my own thread, but I guess that puts me in Valcyte range...
    Valentijn likes this.
  6. SOC

    SOC Moderator and Senior Member

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    Welcome to the herpesviral subset of ME/CFS. :hug: My family has had a lot of success with Valtrex and Valcyte. The members of my family who were either less ill (mild ME/CFS), or ill less time got remissions with V and V. I haven't had a remission (yet :)), but I've gone from bedbound to working part-time and doing limited housework -- and not feeling like crap every second of every day. ;)

    On the negative side, we don't see to be able to keep the viruses suppressed, so we have to go back on the antivirals periodically which is an expensive proposition. Still, it's WAY better than being sick all the time. :D
    OnlyInDreams likes this.
  7. PDXhausted

    PDXhausted Senior Member

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    Thanks @SOC for that encouraging message. :)

    I'm about 4.5 years into my disease so I guess we'll see how I do! One thing I've always been unsure of is that I did not have a clear acute viral onset like you and many others and I also don't have flu-like symptoms. But I have historically had problems with viruses. Had many weird viruses in college including viral meningitis, as well as catching colds that would render me bedridden for a week, every six months my entire life. Have not caught a cold in 4.5 years since onset, so definitely something highly unusual going on in my immune system towards viruses.

    The one thing that concerns me about Valcyte is that I have a pretty extreme sensitivity to medicine and I'm "that person" that always ends up with the weird side effects :/

    Anyone out there that has a similar EBV/HHV6 antibody profile as me seen benefit from Famvir alone?
  8. SOC

    SOC Moderator and Senior Member

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    I haven't taken Famvir, but I believe it's the first thing Klimas/Rey try, so that's promising. :) Maybe one of their other patients will chime in here and let us know how well it's working.
  9. PDXhausted

    PDXhausted Senior Member

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    So I'm 5 days into Valtrex, started at a low dose and slowly increasing. Today after my morning dose of around 200mg, I had an episode of extreme light sensitivity which passed after about an hour or so. I've felt a little off mentally all day, kind of agitated and anxious.

    I want to believe that this is perhaps the virus in my brain responding to the meds... Or perhaps my immune system reacting to it. I realize you don't get die-off per se from a drug like Valtrex, but perhaps it could be some sort of viral response to it.

    On the other hand, the prescribing literature for Valtrex clearly says that there is a possibility of CNS side effects and to discontinue if it happens.

    I'm nervous about suffering through CNS side effects because it's pretty scary and miserable but at the same time, I'm pretty low on options and sort of in compassionate care mode (I'm severely ill and bed bound- also pretty scary and miserable). Has anyone experienced CNS side effects and pushed through to see improvement?
  10. Woolie

    Woolie

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    Hi PDXausted,

    I haven't had any CNS side effects, but maybe this is of some reassurance:

    I'm a post-EBV MECFSer (acute onset with severe infectious mono in 1990). Have been on the Lerner valtrex protocol since early March. 4x1g per day, taken as close to 6 hours intervals as possible (you don't have to wake in the night though). As SOC says, the doses seem to need to be high and constant, because the antiviral effect only lasts a few hours. Lerner's group say you don't see much change until at least six months in, so you have to keep at it. Lerner's group have tested hundreds of MECFSers and the only side effects they report are kidney related ones (very rare, just need to drink more, but need to keep it monitored). This drug is as safe as it gets, and way more so than valcyte.

    They also report that some people experience a worsening of their normal CFS symptoms in the first couple of months (they think is some kind of die-off herxheimer type reaction), and that this is a good prognosis. So could that be what you're experiencing?

    My experience? Mixed. An overall reduction in the intensity and duration of my usual flu-like episodes (my MECFS is a relapsing/remitting type - mild general fatigue punctuated with periods of intense and severe flu-like illness). BUT one particular episode was actually worse than usual, longer and more flu-like, with diarrhea, which I don't usually get. Other than that episode, though, feeling good, no side effects other than thirst (you're supposed to drink lots anyway). Not sure, but one of the Lerner papers suggests that in the short term, you may get an overall reduction in your B cell population, because the EBV infected B cells can't reproduce as effectively to replenish dead ones. This is probably good overall (because they're not nice cells), but maybe bad in the short term.

    So stick at it, see if you can get that dose a little higher each day. Drink lots, and above all, be patient. It might turn out you need the big guns of valcyte because of your HHV6, but valtrex is much safer and much cheaper, so worth a try at least.

    Here's a good link to Lerner et al's instructions to GPs on use of valtrex: http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf
    maryb likes this.
  11. Woolie

    Woolie

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    On the topic of sticking at it (re valtrex), here's an article that shows it takes around 11 months of valtrex (yes 11 months!) for normal healthy individuals to reduce their EBV viral loads to half:

    http://jvi.asm.org/content/83/22/11857.full
    Soundthealarm21 likes this.
  12. PDXhausted

    PDXhausted Senior Member

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    Thanks @Woolie - its really helpful to hear others experiences. I appreciate you writing.

    My side effects were really unpleasant. After the acute and extreme light sensitivity, I became really agitated and awoke later in the night with sort-of hallucinations that lasted most of the next day: every time i closed my eyes I saw these dark furry trees closing in on me and had these feelings of needing to escape and paranoia, which is uncomfortable when you're bedridden. I couldn't close my eyes without seeing the trees for like 12 hours or so.

    My husband got the chance to consult briefly with Dr. Montoya about my case, and based on my labs and quick history, he didn't think I fit the exact group that usually responds to antivirals (I think based on my lack of post-viral onset, and perhaps lack of EA antibodies, but not sure on this). But he did say sometimes people like me respond, so its worth at least trying acyclovir.

    In the meantime, I had stopped the Valtrex and started equilibrant instead. My husband also managed to do a phone consult with Dr. Chia, and he seemed more encouraging based on my symptoms (I haven't had any enteroviral testing done).

    So I've been doing equilibrant for about 2 weeks now, started at 1/8th pill, and increased to 1/4. Interestingly, the last few days I've had increased sound and light sensitivity, and just an overall feeling of brain overstimulation. So if my immune system is attacking something, it feels like its in my brain (or maybe sensory nerves?). I'm still a little unsure of whether this is good or bad but I'm going to stick with it longer and see what happens. And hope and pray I'm not making myself worse :/
  13. Woolie

    Woolie

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    Hi PDXhausted,

    Sorry to hear its been so hard for you to take anything at all. Your reactions sound so bad they're almost like allergic ones. Must really feel immobilizing if you can't even get out there and try stuff. I read a lot of similar stories on this board. As you say, MECFS is probably dozens of different illnesses all with the same label, so what works for one could be really wrong for another. Keep us posted on how you go.

    Woolie

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