I do not know whether this negates my shy-drager (MSA) diagnosis or not, but I have had some incredibly good news lately (sort of)... I tested positive for lyme disease which means I have chronic lyme disease and have for an indeterminate number of years - over 10 more likely 20 years, which would fit as I went to college in 2001 when I began getting ill in Carbondale, Illinois which is not far from Paducah Kentuky and has been known to be a big deer tick population area for years before I went to college.
The reason this may be very good news is that several years (3+ in long term cases) continuing dose of antibiotics can recover people to varying, but usually much better if not fully functional, states. The reason it may not be good news is that it is a very controversial issue in the medical community for many complex reasons as to whether or not it exists, and doctors simply prescribing long term doses of antibiotics and their patients getting much much better... are being witch hunted out of practice. There is a good documentary available on free hulu with a search on "Under our skin" that explains a whole lot about the issue.
As for me, I have long ago given up on getting proper medical care... but I have been trying to get antibiotics prescribed me as often as possible, and every time I get some, I get slightly better by the end of the dose, and have a week or so of doing well before I begin going downhill again.
It's really not doing me good going on this roller coaster, but it's better than just suffering in silence until I die. On good days I can enjoy life again, even the short stents of antibiotics I have been able to get strung together have enabled me a better quality of life than I had before.
How am I on antibiotics now? The pee pain I spoke of in this original post turned out to be a bladder infection, combined with absolute incompetence of doctors. I just finally went to urgent care at a different facility than I have been going to, and found out.
The reason this may be very good news is that several years (3+ in long term cases) continuing dose of antibiotics can recover people to varying, but usually much better if not fully functional, states. The reason it may not be good news is that it is a very controversial issue in the medical community for many complex reasons as to whether or not it exists, and doctors simply prescribing long term doses of antibiotics and their patients getting much much better... are being witch hunted out of practice. There is a good documentary available on free hulu with a search on "Under our skin" that explains a whole lot about the issue.
As for me, I have long ago given up on getting proper medical care... but I have been trying to get antibiotics prescribed me as often as possible, and every time I get some, I get slightly better by the end of the dose, and have a week or so of doing well before I begin going downhill again.
It's really not doing me good going on this roller coaster, but it's better than just suffering in silence until I die. On good days I can enjoy life again, even the short stents of antibiotics I have been able to get strung together have enabled me a better quality of life than I had before.
How am I on antibiotics now? The pee pain I spoke of in this original post turned out to be a bladder infection, combined with absolute incompetence of doctors. I just finally went to urgent care at a different facility than I have been going to, and found out.
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