Its been a little over 4 months on Valcyte. There's not much to report in the way of improvement. I'm still holding out hope that I'll have more improvement by 5 months but that hope is dwindling. I think what I need to keep in mind is that the Valcyte is treating the HHV 6 virus. Although it may be effective in treating the virus itself there is no guarantee of improvement. The past three weeks I've had an increase in chest pain, a migraine which lasted days, and yesterday was a day filled with heart palpitations. At times I wondered if I was going to have a heart attack. I didn't really care and at one point thought I need to clean this dish before I have the heart attack.
I think the reality of dramatic Valcyte improvement is far less than Montoya's original small study where reports were that 75% of people improved. After reading various message boards and conducting a very informal tally of people who had improvements, I think maybe 35-40% experience improvement and far less than that experience dramatic improvement. Is it worth it to take this toxic drug? The jury is still out. Would I recomend that other people try Valcyte? I don't think so. Too much is unknown. I think it says a lot that Montoya has not published his follow up study. It's been well over a year now since the study ended. There are other things that people can take to address HHV 6. Taking Valcyte feels similar to Charlie in his quest to find the gold ticket in the chocolate in the movie Charlie and The Chocolate Factory. Its that random in terms of the knowledge out there in predicting who will have success with this drug.
I find myself trying to understand this disease. It's a futile process really. No one understands it. I think it's a disease that will force medicine to change its current rigidly held views on illness. Unfortunately medicine, currently held hostage by drug companies and managed care will never be able to address illnesses like this until they free themselves of the confines of managed care.
Ultimately the reason I want to understand this disease is I want to have improvements. Do I continue to chase pathogens? I've been doing that for the past 18 months now with little success. I have no idea what to do next.
I would say that my biggest challenge to finding some peace is the mood symptoms. I haven't blogged because the depression is back. I think it has a lot to do with Valcyte because within two hours of taking it I can predict my mood will be in the toilet and then the day turns into a struggle to survive my mind.
I find myself standing amidst the ashes of my life with no faith in anything. I'm even afraid of hope. Intellectually I know that a rebirth will occur. But the waiting is brutal. I know that if I can tolerate this void, this Groundhog Day experience that a new life will occur. I just don't know if I'm strong enough anymore. I was reading a blog about someone's experience with Valcyte which didn't help him. In fact, he wrote that ultimately it killed his spirit. He stopped writing the blog at that point so I don't know what happened to him.
I don't know how to find meaning in this. But I keep searching.
"The limbo-which lasted for twelve timeless days-started as torment, but turned into patience, started as hell, but became a purgatorial dark night, humbled me, horribly, took away hope, but then sweetly-gently, returned it to me thousandfold, transformed." Oliver Sacks