Discussion in 'Fibromyalgia Main Forum' started by malgal, Jun 5, 2009.

  1. malgal

    malgal Member

    i haven't heard much here about Nexavir lately. anyone using it? anyone having side effects and/ or improvements?
    i have been on it for a year and 1/2 and am wondering if that is what is causing my severe migraine headaches.
    i thought Nexavir might be giving me a little more energy but i've been altering the recommended dose so am probably not getting a consistant response. but, i am hesitant to go off it completely.
    it hasn't imroved my ebv titers and am surprised and disappointed about that.

    hearing about others' experiences with nexavir would be appreciated! thanks.

    [This Message was Edited on 06/05/2009]
    [This Message was Edited on 06/05/2009]
    [This Message was Edited on 06/05/2009]
  2. JaneInMelbourne

    JaneInMelbourne New Member

    I've been on Nexavir for 7 months now - 2 ml injections daily. I have some benefits from it - improved sleep quality, less brainfog and better cognitive functioning, more able to handle stress and I'm able to handle chemicals just a bit better. I haven't had improvements in other symptoms such as muscle weakness and various other sensitivities. As far as antibody titres go - EBV titres are still high, but mycoplasma titres have gone down. I've just started Valtrex to help with EBV. I'm taking 2 grams a day at the moment.
  3. heapsreal

    heapsreal New Member

    If its not a rude question, can I ask how much the nexavir costs? I did contact a supplier in NZ and when he got back to me with a price, I was shocked, it was way out of my league. But I have been on famvir 250mg twice a day for about 7 months and have had good improvement and my elevated lymphocytes have come down. You did well to find a place that measured your ebv antibody titre levels in australia(Im in Bris). I could only get tests that said positive or negative and i had a few tests that showed both. The lymphocyte subset test has been a good measuring stick for me.

    Immunovir maybe another antiviral/immune stimulant that may also be of interest to you.

    Good luck.
  4. malgal

    malgal Member

    thanks for replies.
    yes, it IS very expensive! not sure exactly how much it is as my insurance covers a big chunk of it. without insurance, i couldn't afford it.
    try going to the nexcopharma site. they have their preferred pharmacy linked there and i think that's as cheap as you will find it.
    i will check into immunovir, thanks! however, am nervous about anything that's an immune stimulant as i have lupus. nexavir is supposedly an 'immune modulator", i believe.

    i am surprised there aren't more people on nexavir. maybe it's primarily the high cost that prevents many from trying it. that's a shame.
    i recently read that people with cancer are using it. possibly for the anti-inflammatory effects.?

    i am not receiving email notification of replies to my posts. anyone know why?
  5. malgal

    malgal Member

    ... bumping.
  6. malgal

    malgal Member

    bumping again.
  7. FB12

    FB12 New Member

    Just wondering what private health insurance provider you are with that they cover nexavir.

  8. malgal

    malgal Member

    sorry, FB... i never got email notification of replies. does prohealth no longer provide that? i do not check this board often
    anyway, i had humana and they stopped covering nexavir this year---bummer!
    but, i no longer need to take as much of the drug so i can afford it (barely), out of pocket.

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