Thanks Stacie and Leta. The drugs are kind of doing a mental thing now, I think its my liver, a little bit of enceiphalopathy, but it could be TB in the brain or the meds making me goofy. The darn stuff spreads all through your body the minute you get exposed to it and nests in any lesions you have. Since I was stabbed in the head, there's that big lesion there, despite the tiny lesions we all probably have. Then, supposed our immune systems neutralize it , walling it up and encapsulating it. They used to believe that when you first got exposed, it just went to one little spot or so in your lungs and was killed immediately, but they know now that it not true, though most docs still work off the old thinking.
Leta, my sun sensitivity is beyond unbearable now. Incandescant lights bother me, as do certain spectrums of fluorescents. Most of my inside light comes from my fish tanks and I put special bulbs that are more purple in those which helps and is more soothing. I think the thing with the incandescents is my eyes being really sensitive. When I set outside to get in the car, I turn pink to red immediately, flush right away. It's awful. I look like I have laundry soap rash or something. I get sick and have to take the nausea stuff. And I get that awful, too much sun feeling. From less than a minute. I guess like three meds I'm on cause this sensitiveity, then of course my crappy liver I think is causing some kind of mild porphyria type problem, and then the autoimmune. I have to wait to leave my house in the evening if I can or early morning. I love rainy days.
I'm sorry to hear yours is getting worse and that they are bouncing you around on diagnosis. Yeah, duh, fibro. I asked them if my pigment problems were caused by fibro, and my spinal degeneration. What bozos. Mayo has been good for me for the most part because I came through liver transplant, and the docs there have to be really really good and they do my referrals. I feel like I have an abscess or tumor like you describe. I saw two things, one that looked like a psoas abscess which is typical for strep, staph, and TB infection, and one that looked like a large mass in my belly.
I'm worried about granulomatous stuff now, even if the TB clears, my immune stuff looks a little like autoimmune vasculitis, kidney disease, or granulomatous type disease. Hopefully, it is all TB.
I would like to chat sometime. I think my email is in my profile, if not, I can change it. I'm like a mole now. I don't know if you've read Sartre's Nausea, but he must have had sun sensitivity. It is so comforting and funny to read him complain about the daylight and the light and all. It's funny to read it from this perspective.
I hope you both are doing better.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn