Oct 31, 2008
Hrm. Last time I posted was shortly after getting the picc line out. It's been kind of hectic since then. So here's the update...
Got a polysomnogram (sleep study) and MSLT (multiple sleep latency test) done back in september. Just got the results back this week. Even though I had several wake-n-shake events during the study, they weren't detected. Btw, wake-n-shakes consist of waking up, part of my body going into tremors for a few seconds, and then fall back to sleep again. This can happen only once a night or as often as 6-7 times a night. The MSLT came back as showing moderate excessive daytlme somnulence (fell asleep during all four nap periods in under 7 minutes - that's not normal, apparently). No narcolepsy or apnea tho, so that's a good thing. The neuro wants me to start Provigil to help with the EDS. If it helps with the wake-n-shakes, great! If it doesn't help, he's going to refer me to a sleep specialist.
Had another thyroid ultrasound done a few weeks ago. Haven't heard the results yet. Of course, the massive swelling that'd been bothering me was gone the morning of the ultrasound. Figures. Need to get my hands on a copy of the ultrasound.
Absolutely no changes on the latest and greatest lyme&co protocol. Just as well. We ran out of money. Yup, can't afford to see the lyme doc anymore (out of network). So I'm kind of hanging out in limbo here. Decided to take a break from all lyme&co meds in order to see what my baseline is really like. Since I haven't really been sure of the diagnosis anyway, have an appt with a shiny new neuro in January for a full differential. Maybe she'll be able to figure this all out. She was recommended by my current neuro because of her extremely thorough differentials.
The lyme doc had wanted me to start on bicillin shots, but since it was thought I'm allergic to penicillin, that might not be such a great idea. So I went to an allergist to get tested. Turns out I'm not allergic after all. Very slight reaction, but nothing a chaser of benedryl won't take care of. Nice to know. Of course, it really doesn't make much difference since I'm won't be doing the shots because we can't afford the lyme doc and I won't self-medicate.
Interesting note: very little change one way or the other since stopping the lyme meds. It's been 2 weeks now. Still keep waiting for the other shoe to drop, but nuthin' so far.
I'm sure there's more I'm forgetting. Oh well.