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.
>Hmmmm, excellent news! Congratulations on climbing out of the hole, I look foward to following your continued success :)
>Congrats to you and your daughter… The level of your improvement shines through in your choice of words… 4 months ago it was a "trip to the grocery store"' and believe I know what you mean by Herculean effort!! Now, it's "running to town"… That almost sounds effortless! I am so happy for you and your daughter. Thank you again for sharing your journey and sending out those rays of hope that make it possible for others to keep on keeping on :)
>Thank you for sharing your experience. You are bringing hope to a lot of people.
>This continues to be such great news. We hang on your every update.
>i know this antiviral treatment is different than other drug treatments we've had in the past. i just want to say "be careful" about starting too much of a life before you know for sure where it's going.
i was treated by dr. jay goldstein–after trying many drugs within his protocol–with a vassodialator called isoxsuprine and, while i still had fibro pain, it took away all my symptoms of cfs for a year. it was like night and day. then it slowly stopped working (tolerance).
i watched my life go back to zero and, at that point, i was volunteering for a women's center, doing abuse classes. as my health fell away again, i now had a lot going on that i felt responsible for. it was all quite depressing. just be careful about choosing to fill your life up too fast… it was devastating.
good luck to you and thank you! xooxoxox
>How would I get a doctor to treat me with
antiretrovirals? I have been so sick for
over eight years and am becoming worse each
day. I can now leave the house only once
every two weeks to get groceries. The rest
of the time I am mostly in bed. I must do
something to turn this around. I have no
Any help would be so very much appreciated.
>This is all very interesting. I ended up here after researching XMRV after reading an article in an arthritis magazine that said XMRV might play a role in CFS and fibromyalgia (I have both). I also have rheumatoid arthritis which is why I was reading the magazine. I always felt my health seemed to change when I gave birth in 1984. I had a hard labor and delivery, almost bleeding to death. I theorized it was because of the stress of this event. Now I realize I might have contracted XMRV from the blood transfusion required after delivery. (I was tested for HIV because they were not testing blood in 1984.) I see my doctor next week and plan to ask to be tested for XMRV. If positive, I will continue to follow this blog. Thanks for your efforts.