AlexB - on my first visit to the rheumie, she checked my vit D level, which came back at 17. She started me on 50,000 units once weekly for 8 wks. I could only take 3 doses. In me, it seemed to make me feel worse - more muscle pain and spasm and fatigue. After reporting this to rheumie - she told me to stop the 50k and go to 1,000 per day. I decided to wait awhile and let my body settle down, and then I just never started back on it. A year or so later, she checked me again
and the level was at 5. This time she said get on 1000/day and I did. Rechecked levels in 2 mos. only this time the lab ran the H25 and the 1,25. The 1,25 was extremely high - and the H25 was even lower than it was before! It made absolutely no sense. I was ordered off the Vit D - and was rechecked again 2 mos later - at which time the 1,25 had returned to nl range and the H25 was at 20 something. I now take Vit D in my daily multiple, which is 500mg. See the rhuemie again in 3 weeks and will probably retest again (after 8 mos. on the multiple only).
There are some interesting posts on the Lyme board about Vit D - with some references to the wacky Vit D levels (like mine) being reported by lymies along w/ some connection to AI and other disorders. I think we need to remember that Vit D is really a hormone, can build up in our bodies and is a catalyst for some very confusing things. You said you actually got worse on your Vit D supplement as well - though it could be coincidence. You and I are the only ones I've seen to report this - it will be interesting to see if others do. My main concern is people shouldn't just assume it's all good - it seems there is a vast range of dosages out there and I hope everyone is monitoring their levels from time to time - and remembering to consider Vit D as a possible culprit if things take a turn for the worse.
diagnoses: mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds: occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair.
~~ Chinese saying as quoted by Helen Nearing