I'll try to be as brief as possible. Been treating for 3+ years (IV and now pulsing orals). Much better in many ways (I lead a modified life, but feel "okay" a lot of days, but still treat and take meds for sleep and pain as needed), but continue to have CFS like reaction to exercise/exertion, including a "crash" after exercise, brain fog, very slow respiration (like I could simply stop breathing), chills, nausea, muscle pain worse than associated exercise should generate, feeling worse rather than better after activity, etc. This occurs from about 2 to 6 hours after the activity. I recover somewhat after a night's sleep and by the second day I am pretty much back to normal. This is an improvement over pre-treatment, when I would be bed bound for several days.
I have been trying for 2 years to wisely, slowly, ramp back up to a decent fitness regimen, but there's a wall that I can't get past. I try to avoid hitting it, but sometimes I overdo, and I know exactly what's coming.
At this point, I'm not even sure if I have active infection (even though I am still treating) or if my symptoms are unrelated to Lyme.
In my latest quest for an answer, I have looked into the following and would appreciate a response from anyone who can share their experience or who has any suggestion at all:
CPET test/retest at University of the Pacific (Staci Stevens MA)
Ampligen (experimental drug for CFS)
Valcyte (as an answer for post exertional malaise/exercise intolerance).
Thanks is advance for any replies!
Posted by garunner (Member # 19474) on :
Darn, Posted this in the wrong place. Moderators, please move to Medical.