Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I have had a striking number of symptoms of Dysautonomia this past week. In looking for answers, I stumbled upon the Wikipedia article that says Lyme is one cause.
How is Dysautonomia diagnosed? What specialist will actually diagnose it?
Thanks,
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Do a search under 'Dysautonomia' here Razzle.. I know both lax mom and I (sorry I dont' mean to speak for her) saw top dysautonomia specialists. I've had a number of complications in my Lyme tx so have not started that protocol.
In the meantime, here's an excellent site which I used to find my doc and also offers fabulous info:
posted
A tilt test is usually the method of getting a diagnosis. I have lyme-induced Dysautonomia, which is pretty common. Dr. H lists it as one of his 15 points.
A cardiologist can treat it, or some LLMD's know a lot about it. There are even some Dysautonomia clinics around the country.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
Keebler, that article by Laura Wild is great. I think this will help me tell my family better what happens when I have to stand in one place and why I try to pace when in line at a store or the bank. Thanks.
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Anything that helps others better understand helps us on so many levels.
When we get frustrated, it helps to know that it all makes sense, really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Thanks for the links & info.
Oddly, my blood pressure seems fine, but my body acts like I have the dysautonomia stuff...except I don't actually pass out.
And it mostly affects my heart rate and my gut. Could a person have dysautonomia that only affects the vegas nerve?
And can certain foods trigger dysautonomic symptoms?
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
My BP actually goes up when standing.
I saw a local Cardiologist who initially diagnosed me. Then I saw an Neurologist who is an ANS specialist from the dinet website.
Thank God I saw him. He did an EMG and NCS which showed I have polyneuropathy in my arms/legs. I would have never, even known that.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dysautonomia can mess with ANY function, in various ways for different people, at different times, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Unfortunately, there are no dysautonomia specialists anywhere near where I live, and I am unable to travel...
More crud for my already over-loaded PCP...ugh. Good thing he likes challenging cases, LOL!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Does anyone know if dysautonomia can affect body temp?
Razzle: is there anyway you can forward your Dr the youtube of Dr. Blaire Grubb?
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
P.S. Razzle: call around and see if any electrophysiologist Cardiologists are familiar with POTS. My Cardiologist knew about it and wasn't on the Dinet list.
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