well, aloha

strange seeing my name in post.

i had a very dear friend with toxic chronic lyme, met her kids and husband; lost track
of her several years ago ( i used her son's name in a post on another board and she
went nuke-ey on me, saying the state was tracking her and wanted to take her kids
because her lyme was all in her head and she was a danger to them...all her kids have
lyme and her husband and every friend also has it...all a doctor's/insurance company
conspiracy to keep people sick forever...on and on and on.)...

my first rheumy said i had ehler-danlos syndrome...second added AS to list; third
took away the eds but confirme the AS...my lyme friend told me many times this
doctor was trying to kill me&&& so when i grew restless and unhappy with his quality
of care and sense i sought out a lyme literate rheumy...who became the first doctor
to 'tell me the truth, as it were. He confirmed i has AS and not lyme and he looked
seriously at the whole pattern of issues and complaints and treatments.
I believe he's since died young himself, but this guy was good.

anyone going thru the diagnostic runaround ordeal OUGHT to have that
Western Blot test done by a good lab...(not QUEST)...it'll show a lot of details about
your health in general- it even showed my low-level infected teeth...each of the bands
has specific relevance.

btw...lyme does not require a tick bite and a bull'seye rash...person to person
transmission of lyme is possible (rather similarly to HIV)

diagnosis of anything difficult/rare/episodic and poorly-focused takes the most difficult
thing to get from the medical world...TIME...TIME...TIME and an informed, aware
doctor....rheumy # 4 gave me an hour and forty minutes of his time to review history
and test data before he reached his conclusions...in a world where insurance
providers want a doctor to see ten/twelve patients an hour...it's just very difficult
to get anywhere...oh, golly 'send 'em out for another test' and move on to the next case.

the conundrum...AS is a sytemic arthritis; Lyme treated and rebounding develops into
a systemic arthrtitis...after a while it all looks the same...it's all good.