Immunovir versus Inosine Revisited, Part 1

Part 2 of this series is here.

Immunovir background
There is a drug that I have written about here on my blog before called Immunovir. It is approved in Europe to treat a large array of acute and chronic viral infections (and as an aside, it also has a large array of different names: Immunovir, Imunovir, Isoprinosine, Inosine Pranobex, and Inosiplex--so five total, and hopefully there aren't more that I haven't discovered yet).

Several anecdotal stories have been posted online by people who claim they significantly improved from ME/CFS/CFIDS (our disease also has a large array of different names) by taking this drug. The testimonials are consistently more positive than most dietary supplements and herbs ME/CFS patients try. Since it is an approved drug in many countries, it has had a good amount of quality research and clinical trials published in medical journals. In the early 1990s, it was found to be useful for HIV/AIDS (and considering HIV is a retrovirus, if ME/CFS really is also caused by the new XMRV retrovirus, then that's further reason to believe Immunovir would be useful in CFS). The drug's antiviral effects supposedly come mainly through modulation of the immune system, hence the name Immunovir, although I don't think the precise mechanism is perfectly understood.

Unfortunately, this drug is not available in the United States. Some US citizens are able to get it overseas with a prescription, but this method seems to be very costly. A member of the Phoenix Rising ME/CFS Forum posted that the cost was over $280 for a box of 100 500mg tablets. At 6 per day it adds up quickly. Even if you use an on/off pulsing dose schedule, you would still go through almost an entire box per month.

My inosine substitution experiment
Back in June I mentioned that a few CFS doctors are specifying that plain inosine, which is available cheaply as an over-the-counter supplement, can be used in place of Immunovir. I wasn't sure if this was really true, and no scientific rationale was given, but I figured since Immunovir is so difficult to get for US citizens and inosine so easy, I decided to go ahead and take their word for it and give it a try.

I followed a dosing schedule Dr. Cheney posted for the real Immunovir a few years ago: on 2 months, off a month, on 2 months, etc. while varying the dose each week and skippping weekends. I've now completed two full "rounds" (round meaning the two months on, one month off period) of this protocol, substituting inosine for Immunovir in a 1 to 1 ratio. I really did not feel any improvement, and I have to say that I had some troubling side effects. First, during the earlier part of each round and especially during the higher dose weeks, I had pain in my arms and legs. In addition I actually had two bizarre injuries. Early on in the first round I had a vertebrae or a disc in my lower back become slightly dislocated. It hurt for awhile and I even had a bruise around it. Again during the first few days of the second round, I believe I sprained a ligament in the left side of my neck. I couldn't turn my head for weeks. Months later these injuries are still not 100 percent better. I may have to go to a chiropractor.

These adverse events might be explained by a hypothesis that chronic viral infections tend to congregate in the neck and spine, but on the other hand, this reaction was not very similar at all to the reaction I got from olive leaf extract and monolaurin (which was nearly identical to CFS patient reactions to Valcyte and similar drugs). So the problems I had might have been true side effects and not just some kind of viral die-off or immune reaction.

Looking for answers
Due to these experiences, I had already been reevaulating the whole inosine vs. Immunovir thing. Then in the aforementioned thread at the Phoenix Rising forums, a bunch of people jumped in to cite how DeMeirleir, Cheney, and even my previous blog post discussed using inosine in place of Immunovir. Between not understanding the justification for the substitution and not wanting questionable information being spread, especially when I participated in the spreading, I was prompted to really dig and see if I could find information that would either support or refute this use of inosine. Then someone wrote that they had tried both and thought plain inosine was much less effective, and this comment inspired to investigate even more.

I spent hours and hours and days and days, Googling, searching Pubmed, reading Wikipedia articles, and then I hit the biggest find of all when I discovered the 1974 patent called INOSINE DERIVATIVES, outlining an invention designed to increase memory and learning and treat viral infections. Yet, since I didn't have the education necessary, it took me many more hours and days to understand and interpret in a useful way the the information I had gathered.

Anyway, I believe I have uncovered some very useful information which will soon be posted in the next installment of this topic, Immunovir versus Inosine Revisited, Part 2. Among other things, I will discuss the differences between the two substances and describe how a much better substitute for the real Immunovir can be created from off the shelf ingredients.