I went to see the Lyme specialist today. After driving 90 minutes there (and later, 90 minutes back), his message was pretty simple. He said, "Well, I guess you should just stay the course for now."
You know how I like my data, so today I went in with my graphs and charts updated! I track how I feel each day with a simple scale of 1 to 5 (5 being very sick and 1 being well/almost "normal"). It showed pretty clearly how Lyme has affected me. Last year at this time, I had racked up several months of feeling quite well, averaging 2.1, after starting low-dose naltrexone in March 2008. Lyme plunged me down into the 3's, 4's, and 5's.
In February 2009, my symptoms had cleared and I went off the antibiotics (I was at about 2.2 in February, very close to my pre-Lyme condition). Then, as most of you know, my symptoms returned, I went back on antibiotics and went through another 2-month long herx, with way too many 4 and 5 days that confined me to the couch.
My graph clearly shows steady improvement now, but I'm not yet back to pre-Lyme levels. I haven't had much knee pain, but my overall fatigue and reduced stamina are still worse than before.
So, definitely making progress but not there yet. And, although I hate being on such high levels of antibiotics for so long, I'm going to be pretty hesitant to go off again, until I'm completely sure the Lyme is gone (no way to be really be sure, though). I just don't want to go through a fourth herx reaction from restarting again!
So, no big news. But I'll take slow, steady improvement. Just stay the course.
(check out my past post for more information on CFS and Lyme ).