Nexavir/kutapressin

Discussion in 'Fibromyalgia Main Forum' started by JaneInMelbourne, Sep 12, 2008.

  1. JaneInMelbourne

    JaneInMelbourne New Member

    Is anyone taking Nexavir? I'm interested in trying this and would love to hear of others' experiences.
  2. heapsreal

    heapsreal New Member

    did you find anything about the valcyte study in australia. If your looking into antiviral type things google immunovir and also inosine which is a supplement that some docs say isnt that different to the drug immunovir, alot cheaper. Its not a cure but found it has helped with aches and pains as well as sleep. Have been using it for about 2 months now, and will continue with it and see if i get further improvements. Also going to try transfer factor which people on this board have found helpful for viral infections.
    Good luck,
    ps interested if you find more about nexavir/kutapressin.
  3. ladybugmandy

    ladybugmandy Member

    nexavir is a mild antiviral and will likely work only on newer infections. if you have been sick for a long time, i am not sure it will help much.

    i used it and started to feel a little better but then went back to my usual state.

    good luck
    sue
  4. wldhrt

    wldhrt New Member

    Unless you have a mild or newer case, Nexavir alone probably won't help much. I was put on it while on Valcyte, however, and it did make a huge difference in my pain levels. Supposedly, it attenuates immune activation, which is a state viruses seem to like. It can get quite expensive if you use it everyday, but its' benefits may wear off after a while as well, so "pulsing" the injections may be a good strategy, while saving you a little money.
  5. JaneInMelbourne

    JaneInMelbourne New Member

    Thanks all for responding. From what I've read at the moment, I don't think that nexavir is going to be the thing that will cure many of us, but perhaps it could be an important part of a treatment plan. Sue, I'm wondering in your case (I've been reading some of your posts), nexavir could give your body a boost in terms of helping get rid of toxins rather than for its anti-viral properties. I think that when we're on anti-viral drugs, our bodies have to detoxify those drugs, as well as the toxins produced by the viruses when they die off. One of the first tests that I had when I was diagnosed with CFS was a liver functioning test (not the usual blood test), but one where I had to ingest caffeine and paracetemol and then provide urine samples. It was found that I had problems in the glutathionation process which is needed for detoxification. My doctor said that all the CFS patients that she tested came out with this problem.

    Jane
  6. JaneInMelbourne

    JaneInMelbourne New Member

    Wldhrt, thanks for your suggesting about pulsing. I've read that someone (either Cheyney or Enlander I think) recommends that too.
    Jane
  7. ladybugmandy

    ladybugmandy Member

    hi jane. yes...i'd love to take nexavir and glutathione and other things but dr. lerner probably won't allow it.

    i am sure i could take the undenatured whey powder but it makes me puke.

    best of luck...

    love
    sue:)
  8. JaneInMelbourne

    JaneInMelbourne New Member

    Hi Heapsreal

    I have got absolutely nowhere with getting any response from Dr Deed. I have left phone messages and emails and getting no reply. The only question I asked him was who is planning to run a valcyte trial.

    I'm clearly not going to get a response from him, so I was wondering if you are going to see him again sometime, could you please ask him this question?

    How are you going with the inosine and transfer factors?

    Thanks.
    Jane
  9. heapsreal

    heapsreal New Member

    Hi Jane,
    I will be making an appointment next week but probably be at least a month before i can get in to see him. I will ask him though, i also know he has been away.

    I have added the transfer factor to the inosine and have had some improvement, probably stabilized if that makes sense, but not expecting to feel normal straight away, but am happy with way Im proceeding.

    Have you thought of just asking your doc about trying antivirals, valtrex is suppose to be the one they use if u have had prior exposure to ebv. I initiaaly tried famvir for a few weeks and felt some improvement(i think) but it was pricey, i then tried valtrex as it was a little cheaper but didnt notice much and stopped after 2 months because of lack of results and price. I was taking 500mg twice a day(total 1000mg), since then have read where overseas experts using valtrex use 3000mg for 6-12 months, this is out of my price range and not sure if my doc would prescribe that dosage. If money is not an option consider asking your gp about this and take some info from dr lerner(google)for him to read. As far as testing goes, i dont think there is really a certain way to test for these infections, trial and error is probably the only way to know.

    I will keep in touch, good luck.
  10. JaneInMelbourne

    JaneInMelbourne New Member

    Hi Heapsreal

    Thanks for agreeing to ask Dr Deed about the valcyte trial. I know that there is often a time problem with doctors appointments, so I really appreciate you sparing the time for this. Hopefully, it should only take a minute or so.

    I'm really glad to hear that the transfer factors are helping you. I guess that provides further evidence that there is something viral happening for you.

    Best wishes
    Jane
  11. JaneInMelbourne

    JaneInMelbourne New Member

    Hi Wldhrt

    I'm very interested in the combination of these two. May I ask who is prescribing this for you?

    Thanks.
    Jane
  12. wldhrt

    wldhrt New Member

    Hi Jane,
    I actually work very part-time for a doc doing research, and get to talk to people like DeMeirler once in a while. He was the one to suggest adding Nexavir to the Valcyte protocol, and my boss\doc\friend prescribed it for me. It (Nexavir)did make a big difference for me when I was on the Valcyte, but now that I'm off I'm seeing less gain from it. I'm not sure if it's because of the synergistic effect of the two together, or if the effectiveness of the Nexavir wanes the longer you're on it. But for a while when on the two together, I was really feeling well. You may or may not have the same experience - all you can do is try it yourself and hope for the best.
    Mark
  13. JaneInMelbourne

    JaneInMelbourne New Member

    Mark, that sounds like a very handy job you've got there! I'm not sure if there's anyone else apart from Kenny De Meirleir doing this combo, but he's reporting a pretty good success rate. How long did you do the valcyte for? Have you had any lasting benefits from it?

    Jane
  14. heapsreal

    heapsreal New Member

    Can i ask how you obtain nexavir. Did you find the valcyte expensive? Would be nice to find out ways to get these different meds used overseas at a reasonable price legally.
    Ta heapsreal
  15. ladybugmandy

    ladybugmandy Member

    hi all. i remember nexavir being pretty expensive. valcyte is almost $40 a pill.

    i recently found a generic valcyte called "valcept", probably shipped from india, made by a company named cipla. it is cheaper than the original.

    patent laws might be different in india.

    sue:)
  16. wldhrt

    wldhrt New Member

    Hi all,
    The Nexavir can be very expensive if you use it everyday as DeMeirleir suggests. You can only get it in the States from one pharmacy, Custom Rx Shoppe in Washington. It costs $150.00 per 20 ml. vial + shippping. If you use it the way DeMeirleir suggests, the vial will last only ten days - which means $450.00 per month. I have cut down on usage, and believe after the initial dosage it makes sense to pulse the dosage, as your immune system sort of needs to be "tricked" into using it. I think Dr. Enlander is still using Nexavir in combination with some other supplementation, and as far as I know only prescribing for once per week.
    The Valcyte is even more expensive, @ $2000.00 - $3000.00 per month, or more. (There may well be an effective generic). I was lucky enough to get it from Roche for free, initially for six months. DeMeierleir told me to take it for an additional three months, (nine total), as at six months my LMW Rnase-L was near-normal, but still a tad elevated. He felt it important to get that level down to normal before proceeding with further treatment. I did not retest Rnase-L after the nine months, still might do so, (important to know not only for me, but for the research I'm doing). I did not notice any improvement (in fact, felt lousy, severe and extended Herxheimer reaction) until the seventh month. Shortly after, I added the Nexavir injections and my pain level improved dramatically. I am not nearly as stiff upon waking, can do a lot of the yoga poses I used to be able to do without feeling "tight", more flexibility, and my strength is much better, as is my cognitive function. I still have a problem with stamina, as well as post-exertional malaise, but am hopeful that I may be able to improve these with gradual conditioning, and the hope that Montoya, et. al. is correct in his belief that more improvement may occur after being off the drug. I am also being treated for leaky gut with another DeMeirleir protocol - short-term ABx, glutathione, mega dose probiotics, elimination of food sensitivities, etc. Such a long and complicated path!

    [This Message was Edited on 10/04/2008]
    [This Message was Edited on 10/04/2008]
  17. ladybugmandy

    ladybugmandy Member

    hi wld.....i think i emailed you before...but i have since lost that account.

    i wanted to ask you....when you say your LMW RNase L normalized, do you mean the ratio of LMW RNase L to normal RNase L or just the overall RNase L activity?

    thank you
    sue
  18. JaneInMelbourne

    JaneInMelbourne New Member

    Hi Mark

    I'm really glad to hear of your improvement. I hope that the benefit continues to increase. More strength and improved cognitive functioning and less pain and stiffness sounds great. If I understand you correctly, you've completed 9 months of Valcyte, and are still on Nexavir (pulsing).

    I'll be starting the nexavir very soon. Do you do the injections sub-cutaneously or IM? I understand you can do it either way. Just wondering which is better? And which is less painful (my pain threshold is pretty low with this illness)?

    If nexavir helps, I may add the valcyte further down the track. In the meantime though, I know that I have low glutathione and gut dysbiosis. From what you understand from Kenny De Meirleir's approach, do you think I should try to treat those while I'm on nexavir and before I start valcyte or wait until I've completed the valcyte?

    I really appreciate your comments.

    Jane
  19. wldhrt

    wldhrt New Member

    Sue and Jane,
    Both of my Rnase-L levels came down after six months of Valcyte, and hopefully further to normal after nine months treatment (I've yet to check).
    The Nexavir injections can be either IM or sub-Q; DeMeirieir suggests sub-Q. It is less painful this way - you can use a short, fine needle like those for insulin.
    As far as your treatment protocol, I'm not a doctor and have no more idea about how to treat this DD than they do. But it sounds like you have more than one issue going on, and likely would be treated with both anti-virals and ABx. I would do one at a time for a number of reasons, but mainly because of the strain on the liver that these drugs can have. DeMeirleir uses Lipoceutical Glutathione with the antibiotics. If you have gut dysbiosis, you probably have leaky gut and that, too, has to be addressed. So I'm sure you're aware that there is no "magic bullet" or singular treatment for most of us - there are layers we have to unpeel one at a time, and deal with them accordingly. We didn't get sick overnight; there were probably factors unbeknownst to us at the time that contributed to our present state (and may still be complicating matters). Conversely, we're probably not going to heal overnight, either - it's a process, and all we can do is apply what we currently know to help ourselves.
  20. ladybugmandy

    ladybugmandy Member

    thank you for your post.

    i am very glad to know you are better.

    my RNase L activity is almost within normal range but i think all i have left is the LMW RNase L...my ratio was 9.8 at last testing!

    i am hoping it will normalize with time, without ampligen.

    may i ask how long you have been sick? perhaps that really affects the amount of LMW RNase L present.

    it has been over 15 years for me!

    sue:)