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Peterson Reports Antiviral Effective in Treating “Severely Ill CFS Patients with HHV6 or CMV”

Discussion in 'General ME/CFS News' started by Ember, Apr 9, 2013.

  1. merylg

    merylg Senior Member

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    So sorry to hear this vli. I too am becoming more and more bedbound. Today I am starting Valtrex (Valaciclovir) for what it is worth. I cannot wait any longer for the powers that be to properly investigate and/or offer me any antivirals or other treatments. So much time has already been wasted & my health is now rapidly declining.

    My hand eczema had a good response to Doxycycline 100 mg/day over 5 days. This is a good sign. So plan is to revisit Doxycycline next. Probably in combo with Clarythromycin & Tinidazole. BUT first to see how I tolerate an antiviral...as I react to most things! If I tolerate it & it helps, maybe I would need to be on it a long time? Then I read it is inactive against latent viruses in nerve ganglia :(
    heapsreal likes this.
  2. Enid

    Enid Senior Member

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    Brilliant news - thanks Ember - I always knew viral infection of one kind or another present/responsible at my own severe stage. The "finding" in the first place gives one hope. Now can we look forward to better testing in the UK.
    merylg likes this.
  3. vli

    vli

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    I don't think that will happen for a long time... sadly just going by my own experience.
  4. ukxmrv

    ukxmrv Senior Member

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    So sorry Vii to hear about the Vistide. You have tried so many different things and I can appreciate how that new disappointment would feel. It's a bad blow.

    Do you have a plan B at all?
  5. vli

    vli

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    No, not really. But I've gone back on valcyte out of sheer desperation--I have nothing else. I did start a thread asking anyone if they thought nexavir might be a good substitute for valcyte to target hhv6 as I've been bedbound since going back on valcyte but no one has said anything. Going on valcyte means a very very low quality of life (not that it was high before, but comparatively) but frankly I have no choice.
  6. Sasha

    Sasha Fine, thank you

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    I've been on kutapressin (which is essentially Nexavir, I think) for a year and it has done zero. I've recently been tested for HHV-6 and have high IgG antibody titres (1:1280) and I'm awaiting PCR results. I haven't tried Valcyte yet (am hoping to get it) so can't offer a comparison.

    I think that what works for people is very individual so I wouldn't go on my N=1 experience to discourage you!

    I'm sorry you're so ill. It is so dispiriting to have to try so many things.
  7. vli

    vli

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    hi Sasha, thank you so much for that. In that case, I think I'll stay on the val. then. i don't think you're the first person to have said nexavir doesn't work as well in lowering levels anyway. Are you trying to get it from a private doc--because I can't imagine being able to get it in the UK from anyone else?!
  8. Ema

    Ema Senior Member

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    FWIW, I started Valtrex at 4g/day about 2 weeks ago and I have noticed positive changes already. It really surprised me since I've taken Famvir and acyclovir in the past and never really noticed all that much.

    The first few days were kind of rough with dizziness and headaches but it has mostly eased off at this point. And I seem to have found more energy despite making some fairly major other changes to my protocols.

    I hope you have similar success with it!

    Ema
    heapsreal likes this.
  9. Ema

    Ema Senior Member

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    Nexavir was the first antiviral I tried and it did make me feel a little better. It didn't solve the problem obviously but it made enough of a difference to convince me to keep pursuing the antiviral line of treatment. I don't regret taking it at all.

    I only stopped it because I got tired of the daily sticks and bruising especially when I started Hizentra and had that as an infusion to deal with as well. I know some have good luck with smaller needles and slower injections but apparently I am too impatient!
  10. vli

    vli

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    No I totally hear you. and don't forget the cost. You expect to get more bang for your buck at the price nex is sold.
  11. Sasha

    Sasha Fine, thank you

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    Currently trying to get it on the NHS - fingers crossed!
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I have been taking Hepapressin which is Nexavir for over a year and last month I tested around 1280 for HHV6 too. I have also been off an on gcMAF which Dr. Enlander upped at that point. The gcMAF made me so sick I couldn't handle it and went off of it (stayed on Nexavir).

    So, I too am wondering what to do about HHV6. I read here that CMX001 is in stage III trials. Anyone know where and if taking patients?
  13. Sasha

    Sasha Fine, thank you

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    There's a CMX001 thread - might be worth asking over there or starting a thread with the title, 'Where can I enrol for CMX001 trials' to make sure you get a response. I think your question could easily go unanswered on this thread! :) It would be great if you could get on a trial.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    We aren't eligible for the current phase 3 trials unfortunately. Maybe they will start some new trials we'd be eligible for?

    Sushi
  15. vli

    vli

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    Alright, I think both your and Sasha's stories are enough to tell me nexavir doesn't work.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I wouldn't jump to say that Nexavir "doesn't work," but it probably doesn't work as well as an antiviral specifically targeting HHV6. It also may depend on the dose you use and how frequently you inject it. Isn't Hepapressin injected once a week usually? And it has other ingredients...anyone know how much Nexavir is in it?

    I know Nexavir helps me but I can't say specifically how it is affecting titers since I am taking other things too. Reactivated EBV has gone down but it could also be from GcMAF. Nexavir is usually prescribed at 2 mls daily.

    Sushi
  17. vli

    vli

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    you're right, that's fair. have you seen any drop in hhv6 at all, or do you not have reactivated hhv6?
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know if I have HHV6. I was neg by antibodies but that may not be accurate. I just got tested by PCR.

    Sushi
  19. vli

    vli

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    yeah... I've also never had antibodies but both biopsies I did in '11 showed super high levels. I disagreed with my last doctor's assessment that the biopsy results meant nothing, because I don't see why the lab would have a reference range for something that meant nothing (the reference range being 0-50 and my level being in the thousands).

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