JackieCalifornia - You said that my doctors are opened minded. I have to tell you that for the past 3 yrs. of being so sick and in and out of hospitals, I have been begging the doctors to give me a lymes test. I told them, which were many, that I had lymes twice before many years ago and when I first got sick I felt that I had it again. Went to 3 internists, 4 rhuemologists, several neurologists,3 endocronologists, 2 infectious disease specialists, etc. NONE of them wanted to give me a lymes test. Finally in Jan.of this year I cried to one of the doctors and he gave me the test which came out Positive! I always argued with the doctors for that test and they let me walk around with lymes for 3 years. I had to insist and be my own advocate. It was horrible!
Kelly5858- I had High Calcium serum for years but for the past 3/4 of a year it's been normal. I also had the Setambi scan and a Cat Scan with contrast of my thryoid (neck area) and it showed no tumor at all.
Do you have a copy of all your lab work? I would be interested to know if your calcium has been high. From what I have read, elevated calcium, PTH, and low vitamin D point to a parathyroid tumor. The calcium may fluctuate from high to normal so see if it has been high at all. The high calcium makes your body stop absorbing the vitamin D as a defense mechanism. Check out parathyroid.com.
Lori, it sounds like your MDs are thoughtful, which is good. You may not need the pricey LLMD ... there are some strange MDs out there who claim to be Lyme specialists, and they seem a little ... um, strange. So being a supposed 'LLMD' isn't the ultimate: what counts is that the MD(s) have an open mind and don't try to pigeonhole you into what they want you have.
From your comments about what your MDs are doing so far and what they intend to do, they seem pretty open minded, and that is what counts. You are fortunate in that regard. So don't worry about the expensive LLMD, as long as your MDs aren't shutting you down and just telling you to go home and get over it (which happens all too often). Sometimes, ya get lucky, even in the middle of being really sick.
Let us know how it's going and what you find out ... it's helpful to hear from everyone and what course of action they take.
Take care, and know that you are not alone in trying to figure this stuff out. Best wishes to you!
He gave me a bunch of new odd blood tests that didn't come back yet. I also have an appointment for more EMG's since the last time I took them was a year ago. He's also taking a biopsy of my skin. He mentioned that I'll most likely get a lumbar puncture. He's a neurologist that specializes in neuropathy caused by lymes but he's checking deeper into it. Someone here gave me a name and phone number of a LLMD. I called him and he doesn't take insurance. The first vist it $900 and follow ups are $450 not including any tests. I just don't have that kind of money. I'm still looking for a LLMD. I have an infectious disease doctor that put me on a PICC line for the IV antiobiotics. He says the parasites are dead and the neurologists that I have (and I don't like them) say they're not sure if one round of treatment killed them and that I may need another round. I told this new doctor that both these doctors are disagreeing with the other. He told me not to worry but I am worried.
Regarding my Vit.D problem, my level was extremely and dangerously low at 8.5. I lost so much bone mass and now have osteoporosis. I need to get the D level up.
I forgot to mention that my PTH (parathyroid) is High. I don't know why!
Lori
There are others here who know a bunch about how these different ailments relate to each other (or don't), but I have have read that Lyme affects thyroid sometimes.
I have read enough about Vit D to be unsure that supplementing with it is not something I want to do: if my body is shutting down Vit D absorption, it seems that my body knows why. I've read the explanations of this point of view, but can't remember them to write here, but it is all very complex and potentially tied together.
What does your Lyme dr say?