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Re: lyme and POTS / OI

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Hi All,

Just thought along the lines of lyme & CFS, this may be interesting to some

of you fine folks.

When my daughter first became ill last fall, she was diagnosed by a few

" specialists " with POTS / OI - POTS is postural orthostatic tachacardia

syndrome & OI is orthostatic intolerance. For those of you who were like

myself (before I had heard of these BS " diagnoses " - simply put this means

that she could not tolerate standing up without racing pulse, palpitations,

dizziness, vision changes, blood pressure dropping).

Need I tell you every doc refused to test for lyme? (GRRR!)

Well, on the doc treadmill we went - searching for the CAUSE - not a

misstatement of her symptoms. None of these " specialists " could tell me why

this dx was made when she would have all of these symptoms WITHOUT standing

up. (For those of you who " know " me - you must know I " reamed " these docs up

one side & down the other for daring to restate the INCORRECT symptoms.

LOL!) One actually told me something attacks the autonomic (or automatic -

breathing, etc.) nervous system - but they don't know what it is & there is

no way to stop it; that " it " usually runs its course within a year & no way

can docs predict how much damage " it " will do.

At any rate, when we finally got the lyme dx (6 wks later!!!) - we were happy

to have a dx & something WE could attack! LOL!

We then posted to the " Fainters United " forum (a POTS board) & just today

received an email from someone on that board who, in utter frustration with

her autonomic problems, had a western blot done & it came back positive.

(Big surprise, hu??) Sent her tons of links (VBG!) & invited her to join us

here - " lyme central. "

So there are more people out there with garbage can dxs who DO have lyme.

Don't mean to offend anyone here either - but I can't for the life of me

understand how anyone could stop searching for the CAUSE and/or something -

some remedy - that would at least allow one to function on a daily basis.

Guess it's all in one's make-up. I'm sure I'd still be researching 20+ hours

per day if we hadn't found the cause of daughter's illness. (Now I've

switched from cause to cure!)

Blessings & velcros,

Chris

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