We continue to improve. Still underwater, but just under the surface. I don’t want to turn this into a Twitter type report, but do want to respond publicly to the many inquiries and good wishes I have received. I especially don’t want to talk about specific symptoms, though many people have asked for that kind of detail. I’m looking at rating scales as a way to report. But increasingly, as I learn from the science, my characterization of the disease becomes simpler and simpler. To a large extent it boils down to symptoms of inflammation and vasospastic events, as well as symptoms of neurodegeneration for a subset with more advanced disease. There are many questions, but thinking about it in those terms works for me. Within that framework we are better, but I can’t quantify it. Best to look at function.
The Karnofsky performance scale (link) is the most basic of the rating scales commonly used for CFS. We were both about 40% a year ago and had gained maybe 10 KPS points by the time we started antiretrovirals. We have gained about 20 KPS points since then. So 70%. 10 more points to function. 20 for my daughter, because at her age it takes more to get a life. I just want to be able to sit in a chair all day and see patients:).
The reduction in malaise has been obvious to me and definite for her as well, though she didn’t have it all the time as I did. The energy deficit seems a bit better, but not enough for a normal life as yet. Push/crash is still there, but the crash is less severe and less long lasting. The worst downhill excursions are less often and much less severe than before, but not gone. We are both flirting with exercise, but there is some payback. Still it was impossible before. So what was impossible, isn’t. Still a ways to go, but seems pretty amazing to me considering how grim things were a year ago when we quit Lyme treatment.
My daughter continues to be able to go out socially, but not every day. She has been talking about taking a few courses at community college in the fall. I continue to be able to drive, go to town and do errands. Four months ago, a trip to the grocery store once a week was a herculean effort. Running to town is now no big deal most days. Four months ago, I needed a laptop to write from the sofa. Now I sit at the desk most of the time or use my iPad outside. I enjoy going to an internet cafe and having a latte (I’m a coffee lover), whereas before there was no energy for anything inessential. I didn’t drive for four years and a year ago my husband was my caregiver. I drove for the first time about six months ago.
I know of another dozen or so people who have started antiretrovirals, one or two drugs. A few stopped after days, because of intensification of their symptoms. The others are a little better or definitely not worse. And more are starting. I know of no one that feels they’ve been harmed.