• 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.

Isoprinosine -effective treatment for ME/CFS?

Cort

Phoenix Rising Founder
Isoprinosine is one of those kind of weird fringe treatments that CFS seems to attract. Some physicians swear by it is produced by a small company that doesn't have any other products. It's a pig byproduct. When I was at the conference I overheard two physicians laughing about using Isoprinosine in their patients. Isoprinosine just can't get any respect.

Recent study presented at the Reno conference suggested it may, however, be quite helpful in CFS. The nice thing about the study was that it was done by the Klimas team - very respected in the field. Isoprinosine gets respect! For more on Isoprinosine go here - http://aboutmecfs.org/Trt/Isoprinosine.aspx

Check the new study out here: http://aboutmecfs.org/Conf/IACFS09Treatments.aspx
 
Isoprinosine and Me

I know this is an old post but Isoprinosine or "immunovir", as it is known here, is being used by our expert Dr, Dr Vallings, with the proviso that only perhaps 30 - 50 % will be helped. It is very expensive - NZ$180 for 100 tabs. So she doesn't necessarily advise people to try it. However she has had quite a lot of success - I believe I was one of them. I took it (6 perday) for 15 months before I knew I was normal. I became 100% well. I cut down to 2 per day for the last 3 years of perfect health. Unfortunately 4 months ago I got very stressed and an illness and it has all come back - I'm very ill again, on my bed. I'm back on imunovir 6 per day and am trying going off it during the weekend, as per Klimas and Cheney. Hasn't worked yet - will let you know if it works for me again - hoping for it to work in 6 months!
 

Jody

Senior Member
Messages
4,636
Location
Canada
Hi Frankie

Welcome to the forums.

That was wonderful to be 100% well. If it could happen once, surely it can happen again.

Hope for a healthy future.
 
C

Cloud

Guest
isoprinosine

I asked Dr Peterson if it would be helpful for me to add this med now that my immune system has a fighting chance to re-balance (since vistide clobbered the bugs). He said that this drug makes many PWC's sick, and that what I need is Ampligen anyhow. I think it also depends on the individuals immune dysfunction picture. What works for one, may not for the next. But, I am very interested to hear about a 100% recovery on it. Yes, that must be attainable once again.
 

Cort

Phoenix Rising Founder
My god what a story. Unfortunately we do hear that; people who seem to recover FULLY and then later crash again. (It's ALL back huh?) Its kind of mind-boggling. (There's so much we need to know about this disease.)

Can I ask did it come on slowly or did you wake up one day with that awful feeling - "it's back!"?

I guess Isoprinosine takes awhile to work which I guess makes sense; if you're trying to rebalance the immune system its going to take a while to push it back into normal functioning.

Good luck with it! Looking forward to hear how it goes (and thanks for re-opening that old post!)
 
Messages
27
Location
Europe
Isoprinosine

I would like to add my experience with isoprinosine. I just took it for couple of months (3-4), but did not notice any improvement. I do not understand why it is so expensive in US. I am from Europe and here it is one of the cheapest antivirals if not the cheapest one. Anyway, I will give it another try and ask my immunologist about it this week.
 

Marylib

Senior Member
Messages
1,155
Isoprinosine : Length of trial and where to buy from Europe?

Hi.

Just wanted to mention to you that most people I know of need to trial it for 6 mos to a year to see if it is working.
It is great you can get it in Europe at a reasonable price. Some of us in other parts of the world have been wondering how we can import it from Europe and pay less. It is legal to import it into NZ as long as one has a prescription for it. Can you be of any help to us in tracking down a European source?
Many thanks
Marylib
 

Marylib

Senior Member
Messages
1,155
Buying isoprinosine

Many thanks!

I will look into this. If they will ship it to NZ, it may help alot of people.

Best to you
Marylib
 
Messages
14
Isoprinosine

I am from Europe and here it is one of the cheapest antivirals if not the cheapest one

Can you tell me where i can buy it in Europe? They used to sell it here and, indeed, it was dirt cheap as are medications such a Klonopin which is almost for free here, however, because Isoprinosine wasn't turning a profit, they took it off the market.