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Starting Famvir

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Live And Let Die, Apr 1, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think we probably use the wrong wording in how av's work, we say that they stop them reactivating which i dont think is correct. I think they can still reactivate but antivirals stop them from replicating. So even though numbers are high there reactivating and trying to replicate and hopefully the famvir stops this replication process, this eventually lowers the viral load. It seems that they have woken up thats all. I think this is why we can still crash on antivirals as the viruses can still reactivate and cause us some grief but the longer we are on them the less grief they cause us. It took a full 2 years to get my cd8 t-cells down to normal range, are they lower at all compared to previous tests??Its a good thing your feeling better, run with that for now.

    cheers!!!
  2. Live And Let Die

    Live And Let Die Senior Member

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    CD 4 levels

    Absolute CD 4 Helper 1302 range 359-1519
    % CD 4 Pos. Lymph. 43.4% range 30.8-58.5
  3. Live And Let Die

    Live And Let Die Senior Member

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    I posted this about blood work done last year

    EBV
    VCA IgM 26 range 0-20
    EBV-EA 24 range 0-20


    HHV6
    IgM <1:10
    IgG Antibodies 3.39 High Positive >1.10


    Don't know where my paperwork is but looks like they use a different sort of testing.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Different labs use different ranges etc, dont know why?? Makes it impossible to see a difference??
    U finding the LDN still helping??

    cheers!!
  5. undcvr

    undcvr Senior Member

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    There are supposedly pple with high titers to ebv and or hhv6 that are healthy and living normal lives, that is why some doctors don't understand what separates that from the fatigue. Or maybe they are just struggling along and a step away from crashing.

    I agree with you stay on your regimen since it is working for you.
  6. Live And Let Die

    Live And Let Die Senior Member

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    I think the effect of LDN is slowing down or maybe I'm just getting used to it, but I haven't taken a day off it and don't plan to.
  7. Live And Let Die

    Live And Let Die Senior Member

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    so, i'm still about the same as i was a few months back. started the switch between taking LDN in the morning to at night. Noticable.

    Something nice happens when i take the ldn at night after a full day, just dont know what it is. More pain during the day maybe. A little energy boost it feels like when i take it at night. Def better with it than without it i think.

    Um, thats about it. Thinking about trying that open trial in San Fran but it's too far to drive and i dont feel like flying there. Although i could get there and back in one day.
  8. satoshikasumi

    satoshikasumi Senior Member

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    Famvir is not a very good drug for EBV/HHV-6. It will have very little activity against these viruses at the maximum recommended dose. If you have insurance it can be a useful drug to take at higher doses, i.e. at least 8gm/day. Even if you "overdose" it may be less toxic than Valcyte. -Disclaimer: I am a patient, not a doc
  9. m1she11e

    m1she11e Senior Member

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    I think most of us would be hard pressed to find a doc to RX me that high of a dose of Famvir. My doc will try just about anything because he trusts my research. I think this would be pushing it even with him. Even if I did, I could never get my insurance to cover it, even if I did fudge on the diagnosis.

    Is insurance covering this for you saroshikasumi?
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    8 grams is a lot of famvir, 250mg twice a day brought down ebv and cmv for me, i tried higher but didnt notice much difference but then i think these viruses are only part of the picture.
  11. Live And Let Die

    Live And Let Die Senior Member

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    I noticed a difference within a short while of taking my first pill of famvir. I have most likely hit the plain and am leveling out at my current capacity. 8 grams is insane but then again Dr. Lerner wanted what 4-6 grams of valtrex a day. Either way cant afford that much. There's 0 chance my doctor will raise my famvir rx and I'm almost sure he is going to talk about stopping the drug since my ebv levels are still high. I'd really like to continue on. I'm at a point where I can feign a normal function thoughout the day and I d o n o t want to lose that and be back in the recliner a dozen times each day.

    I wonder then, if Famvir is not a very good drug for EBV, what is? Valtrex did nothing.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe try valtex and famvir together, thought has crossed my mind to do this. I think the chronic stress of these infections has affected my adrenal hormones which i am addressing slowly. I think we also have to treat our condition in othersways outside of infections/immune system, also need to treat neurological, hormonal and mitochondrial side of it as well. cfs/me affects so many systems/aspects of us. treatment known as the shot gun approach.

    cheers!!!
  13. satoshikasumi

    satoshikasumi Senior Member

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    Disclaimer- I'm not a doctor. No drug is FDA approved to treat EBV. However, some studies have suggested that Valcyte, Vistide, and Foscarnet are quite effective against EBV. Famvir and Valtrex are not.

    These antivirals do not kill the virus. They just slow it down so that your immune system can catch up with it. You have to take them for 3-6 months at least, and you may not feel better for a full year. Some patients don't respond.

    Roche has a patient assistance program for people who cannot afford to pay for Valcyte.
  14. m1she11e

    m1she11e Senior Member

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    I am not a doctor either...:D However, I did take some Valtrex for a few weeks while still taking Famvir and thought I noticed a bit of a difference. Who knows but I think it might be worth a shot?? Chase that with some Clorox and I think it might just do the trick!! :eek:

    There is a girl I know who took Famvir for very high EBV and felt great after about 6 months. Her EBV levels never changed but my doc said that he sees that often because the immune system is now recognizing the virus and putting out more antibodies. If your feeling better, maybe this is still going on with you and you just need someone to continue on the anti virals for a longer period. Your immune system may just now be getting all rev'd up to kill that EBV off!!! ???
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Many drugs arent approved for certain conditions but that doesnt mean they dont work. Dr Lerner has successfully used famvir and or valtrex for ebv, famvir has helped me with ebv/cmv as it has others. Valcyte isnt approved for ebv either as it is used off label for this condition, in australia valcyte is only approved for cmv and not approved for hhv6.

    Others i have read about who had both ebv and hhv6 who used valcyte were only getting hhv6 lower and needed to add valtrex to lower ebv. I dont think there is a definative answer to what antivirals are effective against. I think most of us know that antivirals dont kill viruses but only stop them replicating thus lowering viral load, hopefully to a level that our immune system can handle??

    Mishelle, i also used both valtrex and famvir together for a short time, only a couple of months, but i also think it made a difference. For me using both comes down to money and can only pick one and famvir has been the most successful.

    Mishelle was it dr dantini who uses famvir for hhv6 and cmv?? From memory he was the one that said famvir was effective against these viruses but it was too expensive for the drug companies to do more testing and get it approved, plus they didnt think there would be a market for it outside of shingles, hhv1 and 2 ??

    cheers!!!

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