All right! So we have the mystery of random limb numbness/limbs falling asleep most likely solved, and the mystery of the “episodes” just about solved… And this morning it happened again! So if that doesn’t confirm it, I don’ t know what does!
Took Rifampin. First my tongue began feeling strange (never any swelling), then the top of my right arm began going numb, then my hands and feet went cold and mildly numb, and the right side of my face was only half-responsive. As in, if I smiled and only exposed the right side of my face, you would only barely be able to tell. Went to the restroom… And everything died down. I find this absolutely remarkable! I suppose as long as I’m not on Doxy or having extreme herxes like I was this time last month, I can probably avoid the emergency room, since the “episodes” haven’t been that severe.
My Migraine numbers are down. I haven’t had a full blown one in.. huh, it might be a week, now. No more reactions to temperature/foods since being off the Doxycycline. I don’t think there is anything left that’s without some sort of explanation… I figured it would piece together eventually if I just rambled enough! Haha. Things are a little more comforting, because now that I have an idea about what’s causing things, I know what to do in order to avoid them, or at least, not make them worse.
Last night I had Truvia with strawberries…and did experience a lot more limb numbness, however, yesterday I also started the Rifampin twice a day, for the full 600mg, which also causes the numbness, so! The jury is still out on how much it affects me. I’ll figure it out eventually. Even after the first additional dose, I needed Lortab for the horrible headaches, so I’m glad we started slowly this time. Then after last night’s dose I had small surges of sudden anxiety and really terrible thoughts, but I was able to talk to friends until they passed. Yesterday may or may not have been a bartonella flare, anyway, so I guess it’s good timing that I was to up the dose then. My thoughts are still a little sporadic today. The dystonia is back.
Right now I’m struggling with the idea of going to three more doctors in the next two weeks. Infectious disease specialist –> Neurologist –> Primary physician –> Cardiologist –> Neurologist –> Immunologist –> Cardiologist –> Another neurologist
I am burnt out, and sick of wasting all of my energy and my insurance’s money on these people who do not help me. It’s taking all I have not to just cancel everything. I especially do not want to see this additonal neurologist but three people have referred me to him… I can’t figure out whether to check the “Chronic Fatigue Syndrome” and “Fibromyalgia” boxes on the applications they sent me to fill out for his visit. I had FM but do not have it now, and I never had “CFS” but yet was misdiagnosed with it and it’s on a lot of my old papers… The only conclusion I can come up with is to write down “was misdiagnosed with” and bring Dr. Byron Hyde’s book on M.E. and CFS in case he wants more explanations.
♥ a rainbow at night