• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Nexavir/Kutapressin story: real or fake?

drob31

Senior Member
Messages
1,487
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?
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
@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
A local pharmacy has turned over the retail portion of its business to another company to better focus on other services.
Custom RX Shoppe Pharmacy at 1313 E. Maple St. has merged its retail operations with the Sehome Village Rite Aid at 220 36th St. Letters were sent out to affected customers informing them that the Rite Aid store will handle their prescriptions.
The change was made so Custom RX could focus on its compounding or personalized medicine as well as its long-term care services, said Kevin Faris, co-owner of the company.
 

Hip

Senior Member
Messages
17,824
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 of chronic fatigue syndrome treatment (drugs and supplements) about Nexavir:
Nexavir injections. The injectable drug Nexavir (formerly Kutapressin) is an antiviral, an anti-inflammatory, and an immunomodulator that has demonstrated overall benefits for ME/CFS, and this drug is often employed by ME/CFS doctors, including Dr Cheney, Dr Enlander and Dr De Meirleir. Nexavir treatment protocols vary, but in one study, ME/CFS patients were given one subcutaneous 2 ml injection of Nexavir daily for the first 25 days of treatment; thereafter one injection every two days, for the next 50 days; and thereafter one injection three times a week for the next 105 days. This study reported a 42% remission rate in these patients at the end of this course of Nexavir treatment.1 Each injection costs around $10. A low preservative version of Nexavir called 4ME is used by Dr Kenny De Meirleir. 4ME is available here.

Dr De Meirleir reports that around 70% of his ME/CFS patients experience at least a 20 point increase on the Karnofsky scale as a consequence of taking Nexavir.1 Dr Enlander says that Nexavir helps about 30% of his ME/CFS patients, and when combined with other compounds including vitamin B12 and glutathione injections, Dr Enlander reports Nexavir helps 67% of his ME/CFS patients.1


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:

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
The 4ME version of Nexavir you can buy prescription-free online here. €90 for 10 x 2 ml ampoules.
http://www.kalidashop.com/en/review/product/list/id/29/
Customer review:http://www.kalidashop.com/en/review/product/view/id/9445/
substitute for Nexavir (Posted on 29/04/2016)
My daughter, who has CFIDs aka CFS, uses this supplement in substitution of Nexavir or Hepapressin. Units come in ampoules which are more difficult to use when filling syringes then the Nexavir 30mg vials, so there is a learning curve in filling them up. However Nexavir which was Kutapressin before it, is no longer manufacturing their product. This is a reasonable substitution as such. Unfortunately if you live in the states you will need someone to have it shipped to who lives in Europe, Canada, Asia or Mexico then have it shipped by private individual to the states.
 

Hip

Senior Member
Messages
17,824
Unfortunately if you live in the states you will need someone to have it shipped to who lives in Europe, Canada, Asia or Mexico then have it shipped by private individual to the states.
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.
 

drob31

Senior Member
Messages
1,487
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.
 

drob31

Senior Member
Messages
1,487
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.


Would enterovirus live in the stomach (mainly?).

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

Hip

Senior Member
Messages
17,824
How long does 2ML last though?

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.



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

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

drob31

Senior Member
Messages
1,487
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.

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

aquariusgirl

Senior Member
Messages
1,732
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 ..,
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
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,
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'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.
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.
 

Hip

Senior Member
Messages
17,824
It has been great for me--but now, being in the US, it is hard to get.

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.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
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.
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.
 
Messages
15,786
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.
 
Messages
6
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.