1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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  1. soxfan

    soxfan Senior Member

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    I have been prescribed Nexavir by my doctor. I am wondering if anyone has ever taken this before and if so did you have good results. It is given by injection and I believe I read it might take up to 6 months to notice anything.
    I have found a few articles on this but none where people are actively using it now.

    My doctor will be calling the prescription in to the pharmacy that carries this so it might be a week or two before I actually begin this.

    I have extremly high antibodies to HHV6 and EBV. He said the EBV in his opinion is active.
    Anyone with any experience?? Thanks

    Kim
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Soxfan,

    If you look on the GcMAF thread, you will find that quite a few there are taking Nexavir. I expect to take it soon myself as I am a patient of Prof. De Meirleir in Brussels and he often prescribes it along with GcMAF. He finds that it helps with certain viral infections and also prevents XMRV from entering new cells--that is my understanding anyway.

    My previous CFS doctor in the States prescribed Nexavir for CFS 10 years ago, so it has been used by some practitioners for quite a while.

    It does take many months (so I am told) to notice the effects of it though and it is very expensive. A few have gotten their insurance to cover it.

    There is a link on the GcMAF thread to a speadsheet that tells which patients are on Nexavir.

    Good luck with it,
    Sushi
  3. soxfan

    soxfan Senior Member

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    Thanks Sushi- I am not sure which thread to look under...It is expensive and as of now my insurance won't cover it. My doctor said it would take 6-9 months to really know. Hopefully my insurance will come through but either way I have to give it a try.

    Soxfan (kim)
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  5. aquariusgirl

    aquariusgirl Senior Member

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    nexavir ...insurance coverage

    Hi Kim

    I would be very interested to know if your insurance will cover it, and if so, what diagnosis code your doc used?

    I was told that only 1 in 3 insurance cos approve it for off-label use..in CFS.

    I heard that from a pharmacist in WA state who works at the pharmacy named on the Nexco website.. Nexco being the manufacturer.
  6. soxfan

    soxfan Senior Member

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    Thank you Sushi!

    If the pharmacy where I have my insurance can get the Nexavir then my insurance will cover it. My husband is a pharmacist so he is working at trying to get it into the store. It first has to come from the manufacturer to the CVS speciality pharmacy and then to the regular CVS pharmacy so I am not sure this will all work out. They said it will take a few weeks to know it that can happen. If not then I will just have to pay for it..
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    nex sounds good, but when i priced it , it was going to cost 1000 bucks a month, just not worth it for me.

    cheers!!!
  8. soxfan

    soxfan Senior Member

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    We priced it at 600 a month..hopefully we can get it into my pharmacy so I won't have to pay out of pocket for too long..Dr. Komaroff recomended I try it so I am going to give it a go.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Soxfan,

    I usually use CVS too. If your husband can get it into his CVS, would that mean I could try to get it from CVS too? And what insurance do you have? I have Medicare. That could make it harder.

    Thanks for the info.

    Sushsi
  10. soxfan

    soxfan Senior Member

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    I am not sure you would be able to get it too but I will let you know when and if my CVS has it in stock. From what I understand CVS has a speciality pharmacy where all the uncommon medications are stored. They have to get it into this pharmacy and then my CVS here in NH can order it from that distrubtation pharmacy. It seems like a long process to me but I am hopeful. I know they will be trying to stock it in the Boston area since that is where my doctor is from.
    I have United Healthcare and we checked and they will pay for most of it...I will keep you posted on what is going on.

    Kim

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