Re: this is a good read (Tom Grier on his illness)

[Guest guest]

Yah- That was written some time ago.

I think I read it a few years ago - it was after I found out

that my many autoimmune dx's were wrong and that what I had was

Lyme. And knowing what his background was, and how he was abandoned

by the very Drs he knew professionally, just re-inforced my opinion I

already had-

which was just how ineffective conventional medicine is when what

you have isn't cancer or a broken leg - and how very much a business

medicine really is.

And the fact remains, that most Drs today (including LLMDs who

are conventionally trained) are still confused about what they really

think about autoimmune disorders, and Lyme - It's just so damned

trained into them that an immune system can be so grossly flawed as

to go awry for life - and oh so sorry - here's some steroids.

When I sought out a Dr. for possible Lyme, I was turned down as a

patient by 3 Dr.s that were already treating Lyme patients- and a

well known LLMD after they read my medical history - all the reasons

were similar - my case was too complicated - which really meant that

I had Drs. signed summaries documenting 20 + years of " Complex

Autoimmune Disorders " and it'd be hard to go against that grain...

in Tom Grier's words- to stick their necks out, or be a maverick Doc.

I was a very high risk (or poor risk) patient to take on.

... As long as a decade ago, I had a few Drs. at the University here

worried about a law suits, because in several instances I received

follow-up letters sent to my home documenting that I had refused yet

another treatment (of immunosuppressants) for my autoimmune disease

(s). Funny thing was though, they weren't worried ** I'd ** sue them-

but rather, they were worried they'd get sued by a family member if

I died- They were covering their butts - showing that I was refusing

treatment after treatment that they kept offering.. ( And that was

told to me by the only Dr. that was trying to help me in 1993 - to no

avail, who thought I might have Rickettsia )

Lucky for me- My opthalmologist was a maverick- abeit it took him 6

years - and I turned out to be a 'positive responder' to abx for Lyme.

If that hadn't happened- I'm sure I'd just be one of life's road-

kill - and my case very much forgotten.

I wrote my testimony for the Mass. Hearings on Oct 12th - and

condensed 30 years into a page and a half. I hope there's a good

turn out and I hope the Mass. residents who speak are gut wrenching.

Barb

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