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POTS dx questioned


luckygoat3
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Hi all,

after seven years of thinking yes it takes that long,i have been questioning my dx of POTS/NCS/OI. When Dr. G did the TTT i passed it actually almost with flying colors, but the reason i was dx was of the symptoms. Now that i have been thinking what if this is lyme disease. Most of my unexplained symptoms aren't POTS/NCS/OI related but some are. My local doctor today said that in this area there isn't much, but i do have animals, live on a farm, and of course have been in the woods many of times. anyways, even if my test which he kinda refused the more accurate testing---he's doing a simple one and i think that will come back negitive...but we will see.

i have never been on the standard treatments for dysautonomia, only an anti-drepressant. :D

susie

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My understanding is that the TTT is considered the gold standard only b/c there really is no other better method of diagnosing POTS. However, it is possible to pass a TTT and have POTS, as POTS can vary in intensity and symptoms from day to day. I know for myself that there are days when I could "pass" a TTT, but yet am still symptomatic. Also, if you are on any meds when given the test, it is possible these could affect the results.

As far as Lyme, I don't have any advice--I am not knowledgable enough. There are others on here who may be able to help.

Katherine

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Luckygoat - POTS is usually a problem brought on by something else.

If you even suspect you have Lyme I would see a good LLMD asap....

Lyme is what brought on my POTS.... Without antibiotic treatment for Lyme and coinfections I have no idea what state of health I would be in right now...

Feel free to email me if you would like jljlc@sbcglobal.net

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