Remember I explained that ME/CFS is neither an immune deficiency nor an auto-immune disease? Parts of our immune systems are over-active and other parts are under-active. This means that suppressing the immune system with steroids (as is often done with auto-immune diseases) won't work for us, and stimulating the entire immune system is likely to make us feel even worse. What we need is an immune system modulator, something that will help re-balance our immune systems, restoring the normal Th1-Th2 balance that we are missing.
I learned this fairly early in my illness, but there didn't seem to be many options available for treatment. I tried many herbal supplements over the years that were supposed to be immune system modulators (various types of mushroom blends, for instance), but I never noticed any improvement. I learned about Immunovir years ago, but since it is not sold in the US, I thought it was unavailable to me (my primary care physician didn't feel comfortable prescribing something not available in the US). Then, last year, my Infectious Disease/CFS doctor suggested trying Immunovir - I was thrilled to have a chance to try it after all these years!
It turns out it is fairly easy to get, if you know how. Immunovir has been used safely in Europe and Canada for decades (it has not been approved in the US for political reasons, not safety reasons). My doctor gave me a prescription that I faxed to a pharmaceutical distributor in Canada. Immunovir costs $100 for about a month's supply (dosing varies), and there is a $30 shipping fee, but my insurance covers Immunovir at 70% (I have to submit the receipts after I get it), and I can reduce the shipping fee by ordering several months' worth at a time. A friend has told me there is a cheaper generic version, but I don't have any details on that.
Dosing of Immunovir is fairly complicated. Apparently, immune system modulators work best by pulsing the dose; a steady dose stops working after a while. I have read all sorts of complicated dosing schedules online, but my doctor suggested a schedule used by Dr. Nancy Klimas, a renowned CFS specialist and researcher: Start with 1 tablet (500 mg) twice a day for the first week, then go up to 2 tablets twice a day for 3 weeks, then increase to 3 tablets twice a day (6 total). In all cases, take Immunovir Monday through Friday and take none at all on Saturday and Sunday. I have read that Dr. Cheney (another renowned CFS doctor) also suggests changing the dose each week and taking it for 2 months, then taking an entire month off.
When I tried to go up to the maximum dose of 6 tablets a day, I had some side effects. I found that taking 2-3 tablets late in the day left me overstimulated and unable to get to sleep. I backed off to 4 per day, taking 2 in the morning and 2 in the afternoon, but then I had some mild immune symptoms (sore throat and aches) after going so long without any overnight and then taking 2 in the morning. So, I have finally settled on my own dosing schedule: 1 with breakfast, 2 with lunch, 1 with dinner (weekends off), and it seems to be working well for me.
As I explained in my earlier post on my improvement last year, I felt better overall last year, with improvements in energy, more good days, and fewer crash days. Some of that improvement was due to beta blockers and some was due to Immunovir, and it's hard to completely separate the effects of the two for me. Some signs that my immune system is functioning more normally include: fewer crashes, crashing less frequently when one of my kids is exposed to a virus, and a significant reduction in allergy symptoms. I need to go back and quantify the allergy improvement, but it just occurred to me recently that a year ago, my allergies had ramped up significantly and now they are back to being mild. Also, I typically feel the worst in the winter, when there are lots of viruses floating around causing me to crash, but I haven't seen that worsening this year. I also believe the Immunovir has helped me to feel more energetic. I feel more physically and mentally alert now and only have that no-energy, no-motivation, can't-think-clearly feeling on rare bad crash days.
I also believe that Immunovir may have helped me to finally get rid of the Lyme disease I've been fighting for the past three years. With our reduced response to infections, people with CFS tend to have a very difficult time getting rid of Lyme disease and its co-infections completely. I don't know for sure yet whether I am truly rid of Lyme (see my earlier post ), but I am off my Lyme meds for the first time in years and so far, so good.
So, I plan to continue to take Immunovir and also want to try it for my son, Jamie, who - as most of you know - has been struggling horribly with his Lyme treatment this past year.
One way to quantitatively measure the health of our immune systems is by measuring Natural Killer Cell function, which is typically low in people with CFS, due to that Th1-Th2 imbalance. I just realized I haven't had mine tested recently, so I will ask my doctor to check mine (which has been historically low) the next time I see her.
Once again, please remember that I am not a medical professional, and the information presented here is just a summary of my own experience and the understanding I have gained from reading research. If I have made any technical mistakes here, please let me know, and, as always, talk to your own doctor about your own unique circumstances.