IMMUNOVIR: your updates? Has it helped/harmed/neither? thanks!!

Hi All,
I did a little search regarding Immunovir, but haven't quite gotten a sense of whether this immune-modulator has helped many of you or not. (Perhaps because folks who have taken it, are all better, and no longer hanging around on PR??

If you have taken it, might you please reply with an update on your feeling about it?

(I have low NK cell, wacky cytokines, Th2 dominance, high EBV titres, etc. the "classic" ME/CFS immune dysfunction profile i think). I'd much appreciate your quick background info and feeling about Immunovir! And any advice you have about what to watch for while taking it, etc.

Many thanks!!
Peace,
Htree

It did nothing for me. No change, nor positive nor negative, but I guess dosing is a key issue here and I took lower dose for two months. Perhaps high dose would have different impact.

My diagnosis is ME ( as per Ramsay) with an acute viral onset. Not had any immune type tests for a while as I live in the UK and cannot afford to pay for them. Over the years I've tested for EBV, CMV and HHV6. I can't find my last set of TH1/TH2 tests but they were all out with low or high. Remember that tnf-a was high.

Immunovir has helped with the recurring viral type symptoms I have (sore throats, glands etc).

I just started, but so far I can tell a huge difference. I have the weekends Off the drug. When I take it, all my symptoms really get faint, not as strong. When I am off of it, it all comes back and I feel miserable during the 2 days off. Too soon for me to say what happens to my numbers but I will update later. So far loving it.

I am a viral onset CCC type (although not much pain thankfully). Like ukxmrv I am from the UK and do not have access to/budget for tests. I found imunovir worked extremely well almost straight away, increasing my energy and stamina (and thus far less PEM).

I had one side effect which was I felt 'wound up' angry/upset a lot of the time, which was improved if I took only half the maximum dose. I had big problems with pulsing though - stopping at the weekends meant depression at the weekends: this may have been a PMT type thing/or testosterone changes since my ME has affected those hormones (halved testosterone within months of onset).

Anyway the pulsing depression was too much so I had to take it continuously and thus its effects have worn off after only a few months.

Although I know it doesn't help everyone, its the only thing which has got to the fundamentals of the disease for me. If anyone has any useful advice on other immune modulators, please PM me.

Roll on ampligen and rituximab.

OTH

I took Immunovir for 6 months, seemed to make my tinnitus louder on the days I took it, but seemed to help my immune system slightly.

I did a google on immunovir as I really had no idea what it was after hearing about it for years.

THis short blurb on it mentions it may be effective against RNA viruses. I have enterovirus which is a RNA virus.
http://www.endfatigue.com/health_articles_c/Cfs_fm-isoprinosine_safe_prescription_antiviral.html

Here is what the above is referring to
http://www.ncbi.nlm.nih.gov/pubmed/8731352

This might be something those of us with enterovirus might consider.

Does this drug require prescription or is it one you can get on your own? Do fevers fall under immune symptoms or might that respond better to antivirals, anyone know?

Hi Ocean,
My understanding is one needs a prescription. However, it's not used in the US (yet). Dr. Klimas/Rey call it into a pharmacy in Canada that they feel is reliable.
It's expensive though: dollar a pill.

Still, if it's less toxic than AVs.... this is what I am attempting to determine....which to try.

Yes I think fever is a symptom that falls into immune-- Immunovir is supposed to "enhance" T-cells somehow-- but the end result as I understand it is a calming/re-balancing of the immune system. (Better Th1/Th2 ratio?). So if fever is one symptom, I don't see why this would not help, if in fact the drug helps the disease overall.
But that would be true if Avs work as well...
(not sure if this is helpful! hope so )

In general I'm trying to understand pros/cons of AVs vs. immunovir--
I appreciate the thoughts so far. if anyone else has more input/experience with immunovir, I really appreciate all the anecdotal info!

Cheers,
HTree

I have had several immunovir courses in the past. They all helped me. I stopped for a long while as I had a problem with multiple sensitivities to chemicals (not related to taking immunovir)

I recommenced immunovir after a ten year gap three weeks ago and am feeling really well on it- just as I did on previous occasions. I intend to take further courses if this improvement continues.

I live in the UK, so have no idea about my blood investigations - they are not done here.
I have viral onset ME from thirty years ago.

I asked the local specialist ME service (run by the hateful psyches) for immunovir, and was told NO I could not be prescribed immunovir as "there is no virus involved in ME", and "these immunologists have got it wrong about ME" even though I had said it had helped me in the past so I had experience that it helped me.

In fact the rationale for taking immunovir is because it is an immune modulator, not for its use as an antiviral. So much for their knowledge!

I asked my GP and was refused as it is an off label prescription and they would not go against NICE guidelines.

I changed GP and gave them an information leaflet about prescribing imunovir in ME/CFS written by Professor Pinching, a consultant immunologist who had twenty years experience in prescribing it for his ME patients. They agreed but I had to buy the drug myself on a private prescription. It cost eighty pounds. (I was happy to pay for it)

I have written a complaint about the poor quality of the local CFS specialist unit to the NHS care trust I belong to - because they refuse effective drugs to patients out of ignorance, and because they do not want to acknowledge that there are immune system abnormalities in ME which can be treated, and because they are at the same time promoting other ineffective and questionable "therapies" on the NHS.

This was three months ago. I had an acknowledgement, it was forwarded to the medical director of the service, there has been no further response from those running the ME service to my letter.

The manufacturers of Immunovir, Newport pharmaceuticals, sent me a really informative booklet on Immunovir and its effects. I see from this that it is effective against viral RNA as well as shifting the balance of the immune system to a TH1 type response, initiating T lymphocyte maturation, and increasing and enhancing IL1 and IL2 production.

Very helpful, thank you. I'll be following this thread too as I'm interested in learning more about both types of meds.

You can buy it over the counter from pharmacies in France.

This is fascinating-- I wonder Why it's not used more/studied in the U.S.? (especially if "safe" enough to even be used OTC in France?) Anybody know?
Thanks!

Curer, Did you have any immune testing done beforehand or just took it without testing? Thank you.

Seriously? No prescription or anything? Is it very expensive? I need to get in touch with some friends in (or near) France!

I got 4 boxes of 40 0.5gm tabs for about 10 euros each box a couple of years ago. Haven't tried them yet - they'll be out of date soon!

Jenny

Hi Jenny,

can you post a link to the pharmacy if u could, thanks.

cheers!!!

Hi Heaps

I didn't get it from an internet pharmacy. It was a pharmacy in the town we were staying in, in Provence. As far as I'm aware it is available from any pharmacy in France.

Jenny