Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The Nexavir/Kutapressin story: real or fake?

Discussion in 'General ME/CFS Discussion' started by drob31, Dec 6, 2016.

  1. drob31

    drob31 Senior Member

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    So, I just got off the phone with the owner of Nexco Pharmacy, the US pharmacy that produces Nexavir. Now, unless this is a scam, this is the following information I received...

    I spoke with a man named Roger who had an Indian accent and who was a philanthropist that owns Nexco pharmacy.

    This is there current website:

    http://www.circlewaygroup.com/

    He said I could get the cream without a prescription and they would send it right away. He also said it's about $450 dollars for a 1 month supply. He then said he would send it now, and trust that I would pay him later. This is all very hard for me to believe.

    In any case he said Kenny de Meirleir stole a batch of Nexavir in New Zeland that Nexco made 3 years ago. He said that this is what de Meirleir uses to produce 4ME, and that it's 11 years old.

    Furthermore, he said I could just send him $400 instead of $450 if I was "tight" on funds.

    Can anyone confirm or debunk this story?
     
  2. drob31

    drob31 Senior Member

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  3. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @Valentijn
    Found this:
    Nexco Pharma Group of Companies v. Kalida.
    Includes Dr. Kenny DeMeirleir as a defendant alleging trademark infringement; June, 2014
    http://law.justia.com/cases/federal/district-courts/texas/txsdce/4:2013cv01723/1090520/18/

    Bellingham pharmacy ends retail to focus on its other services
    http://www.bellinghamherald.com/news/local/article22267353.html
    January 5, 2015
     
  4. Hip

    Hip Senior Member

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    The 4ME version of Nexavir you can buy prescription-free online here. €90 for 10 x 2 ml ampoules.

    I can't say that I have come across anyone on this forum who noted a definite health improvement from taking 4ME / Nexavir / Kutapressin / Hepapressin / Biopressin, even though there are claims by ME/CFS doctors that it helps, and even a study showing that it helps. Here's what I put in the roadmap about Nexavir:

    I tried 4ME myself for around 4 months, but it is hard to draw any conclusions from my own experience, because a several months prior to starting 4ME, I'd achieved some substantial improvements to my ME/CFS via some other treatments I had started, and those improvements were already there when I began 4ME. My best guess is that 4ME did not help me. However, I think my ME/CFS is more enterovirus driven, rather than the HHV-6 and EBV for which 4ME is antiviral.
     
    Last edited: Dec 6, 2016
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    http://www.kalidashop.com/en/review/product/list/id/29/
    Customer review:
     
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  6. Hip

    Hip Senior Member

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    I just now went through the 4ME checkout process, and I can confirm that the address section seems to list every country in the world except the US, so there must be some legal issues with shipping to the US.

    There are online mail forwarding services in various countries that could be used. These provide an address in a given country to receive your mail, and then they forward the mail to your home address.
     
  7. drob31

    drob31 Senior Member

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    How long does 2ML last though?
     
  8. drob31

    drob31 Senior Member

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    I'm just doing some detective work, really. It seems like Nexco and this guy may be legit. But sending me something for free and expecting me to pay later rings alarm bells.
     
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  9. drob31

    drob31 Senior Member

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    Would enterovirus live in the stomach (mainly?).

    And based on your theory Oxymatrine / Equillibrant would be superior?
     
  10. Hip

    Hip Senior Member

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    That's just one injection. You get 10 4ME injections in one box costing €90. You use a lot of injections when you first start the protocol, because you inject daily for the first 25 days. But later on you use 3 injections per week.



    Hard to say. It's usually just a case of trying these things out. Oxymatrine tablets are pretty cheap.
     
  11. drob31

    drob31 Senior Member

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    Thank for the advice. So do you believe this guys story?
     
  12. Hip

    Hip Senior Member

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    What, that " Kenny de Meirleir stole a batch of Nexavir in New Zeland"? You mean he used a fast getaway car, grabbed consignment of Nexavir from outside the factory, and sped off into the distance?
     
    Last edited: Dec 6, 2016
  13. drob31

    drob31 Senior Member

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    You left out the part about explosions and KDM Jiu jitsu fighting, but basically yeah.
     
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  14. Hip

    Hip Senior Member

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    Well if there were explosions and martial arts going on as well, we can only be in awe at the lengths he will go to in order to help his ME/CFS patients...!
     
    Last edited: Dec 6, 2016
  15. aquariusgirl

    aquariusgirl Senior Member

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    I spoke w/Roger years ago & bought his product IIRC. Nice guy. Helpful.

    I didn't keep up w/the nexavir ...didn't see obvious results & I had severe brain inflammation back then.

    I wasn't making great decisions ..,
     
  16. Sushi

    Sushi Senior Member Albuquerque

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    It has been great for me--but now, being in the US, it is hard to get. It is unknown whether the creme will work the same way. They also had a capsule (the creme is made from the stuff in the capsule). I had a free month's supply of the capsule and it didn't do anything for me.
    I've talked to Roger a few times, his stories do raise a bunch of red flags and since the formula for 4ME is slightly different from Nexavir (4ME has less preservative as it is in a sealed glass ampoule) I really doubt that KDM "stole" it from NZ. KDM told me a very different version of this story, but it was a long time ago and I don't remember the details.
     
  17. Hip

    Hip Senior Member

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    How would you rate its effectiveness for you, Sushi?

    KDM says that Nexavir moves patients up 20 points on the Karnofsky scale, after around 6 months of treatment. Moving up 20 points on this scale is like moving from severe ME/CFS to moderate ME/CFS, or from moderate to mild ME/CFS. But if Nexavir / 4ME was really that good, wouldn't lots of people be taking it? If you are taking 3 injections of 4ME per week, that works out to around $30 weekly, which would be quite affordable if it provided these major benefits.
     
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  18. Sushi

    Sushi Senior Member Albuquerque

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    It is hard to put it in points but KDM's estimate may be about right--for the patients who respond to it. The problem is that it is expensive, has to be injected and takes so long to "kick in." So I'm guessing most don't stick with it long enough. Also, in my experience, it isn't a permanent change -- you have to continue taking it.

    Since Nexco stopped making it, I have not been able to get it. Also, Nexco charged a lot more than Kalida does, so it was difficult financially. One insurance company used to cover it. I switched to that company, then they stopped covering it. An ME/CFS patient filed a lawsuit against them saying it was the most important part of his treatment. He won. I tried to use that to get it covered, but failed.

    Kutapressin was much less expensive. I talked to the Nexco guy too to try to get them to keep making it, but so far they haven't.
     
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  19. Valentijn

    Valentijn Senior Member

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    The lawsuit does explain things somewhat. If KDM had an agreement to sell the product in Europe, it's not unexpected that some argument would arise if it's then being sold and shipped to people in the US.

    So the real extent of their disagreement probably goes no further than market territories. Which kinda screws KDM's patients from the US who see him in Belgium. The most legal solution would be for patients to buy 4ME while still in Belgium and take it home in their luggage. Then the sale has nothing to do with the US.

    Roger sounds like a dick. As @Hip pointed out, there is no indication of any theft involved, and those claims are completely absurd. So we already know he's lying there, or at least exaggerating so far that it's the same thing. And my own personal bias says that pharmaceutics, marketing, and philanthropy don't really mix in the real world :rolleyes:

    I wouldn't have faith in a cream-based topical ointment having the same effect as an injection, unless and until science has proven otherwise for that particular product. And the price sounds pretty absurd for one month. The injections are 270 euros per month, and probably contain a vastly larger amount of the substance.

    My guess would be that Roger wants someone to pay him a lot of money for the privilege of producing an injectable form of Nexavir in the US. This is why it is probably not currently available there - essentially, because Roger is a greedy bastard :p Which is to be expected from someone in his line of work, and isn't necessarily a bad thing.

    My personal experience is that 4ME seemed to help a bit for the first 6-12 months. Maybe 5%. After that, it didn't seem to have any impact at all. I've been off of it now for about a year, and didn't get any worse as a result. In fact, I've been improving slightly over the past month or two.
     
  20. JoeK

    JoeK

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    I have used both the Nexco cream and previously the injection. With 2ml injection per day, I'm functional. I've use the cream for several months and it works as good if not better. Also, there's no injection so a lot more tolerable. The cream contains other ingredients. I respond very well to either cream or injection. It works very well for me.

    The big issue is price/cost/insurance for the cream vs injection. I was on the injection for a long time. Virtually since it was introduced and became grandfathered into it with my health insurance. I had a $50.00 copay. With cream the price has been anywhere from $350.00 to $475.00 for a supply of two bottles. The cream is considered an over the counter product and will not be covered by any insurance. I kind of agree with above comments regarding this being a rip off and way over priced. However there is no other option for people within the USA due to a patent.

    The patent for Nexavir is 5,055,296.

    As well, once anyone googles this patent it's somewhat easy to see the process for making kutapressin, neavir, 4me. I highly doubt that the actual manufacture is expensive. It's the certification/approval process for the product that's the issue.

    Nexco cream contains borax, caprylyl glycol, coconut oil, emulsifying wax, phenoxyethanol, porcine liver extract, purified water, rosemary essential oil, sunflower oil, vitamin e oil. listed as inactive ingredients. The active ingredient for Nexco cream 75 is listed as Echinacea angustifolia 3x 1% and Glycyrriza glabra 3x 1%. Listing the porcine liver extract as an inactive ingredient is a way to go around legal issues.

    The disclaimer is that the product has not been evaluated by the FDA for safety or effectiveness, safety or efficacy.

    The actual manufacturer is OHM pharma, Inc in Mineral Wells, TX.

    Roger did tell me that he would expect it to cost $500,000.00 to have injection certified from a manufacturer within the USA and that's the reason it hasn't been done. However at $250.00 a bottle of injection, it would only take the sale of 2000 bottles to cover the certification claimed.

    As well, there are patents claiming use of mammalian liver extract for things such as hepatitis B. From my reading the Nexco patent covers using the product to treat Chronic Fatigue Syndrome.

    It would be very nice and helpful to our community to find a way to make a Kutapressin cream available at a reasonable price that everyone with this condition could afford. I don't think the Nexco patent covers cream with other ingredients listed as the active. It's very much a shame and disservice that a product that works for many is being held hostage.
     

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