Mary Schweitzer on HHV-6
My Story - Mary Schweitzer (cfids-me.org)
HHV-6A and the 37kDa Rnase-L Factor are two of three biomarkers that seem to be useful predictors of success with an experimental drug called Ampligen, an asymmetrical double-stranded synthetic RNA. (I did not have the test for the third, a low natural killer cell function.) I had heard of Ampligen on internet almost as soon as I was diagnosed but no one could get it in the United States. By 1998, however, I could get Ampligen if I wanted it, as long as we were willing to pay the price. Because of those positive test results, and because my health was deteriorating rapidly, my family and I decided it was worth the money and the personal risk to try the experimental drug on a cost-recovery basis. That meant I knew I was getting the drug (and not a placebo), but I had to pay the company's costs, which were quite steep. Fortunately, my parents helped us out in the first years when the total cost was roughly $40,000/year cash (since 2003 I have paid $20,000 cash/year almost precisely my after tax disability income). I began twice-weekly Ampligen infusions on February 4, 1999. While Ampligen has not been able to return me to the person I once was, for the first time in years I did not feel sick all the time. Instead of continually deteriorating, I began to improve.
It has been over a decade since I was diagnosed with ME/CFS. I am not normal: my immune system remains defective and it is difficult for me to fight off infections. But I have improved so much from the prison that was my body in December 1998. I have gone from a Karnovsky disability score of 30 to a 70 (where 0 is dead and 100 is perfectly healthy). Ampligen may not help everyone, but it can help some of us. The markers I have may not be positive for everyone with ME/CFS, but at least patients should be able to get tested for them. Certainly patients and their doctors in the U.S. should have access to the criteria for an M.E diagnosis, and the half-century of knowledge that goes with it.
The presents Ampligen gave me were simple things that the rest of the world takes for granted. My husband said he got his best friend back. I danced with my son at his wedding, and three years later flew to Fort Lauderdale to hold my newborn granddaughter within 24 hours of her birth. On a visit to Los Angeles, I could stroll through the night air with my daughter to see a Hitchcock film being screened at USC, where she attended film school. I walked along the beach barefoot, and hiked on a Rockies trail just far enough to lose the sound and sight of automobiles. I was no longer in prison.
I went off Ampligen after 20 months - in October, 2000. I had a great year. And then, on October 6, 2001 (at Cal Ripken's last home game of all places), I collapsed again. Bob took me home. The next morning I got out of bed and crumpled to the floor. Three weeks later Dr. Ablashi tested me for HHV-6A and found it was once again active, and once again all over my body. It took seven months to get back on Ampligen, and while I waited I deteriorated at a frightening speed. By the time I started again, in May 2002, Bob had to wheel me in with sunglasses on because the lights were too bright and painful. So I've had to climb out again. It seems to have taken a bit longer this time - but I'm back at a 70.
