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» LymeNet Flash » Questions and Discussion » Medical Questions » Dysautonomia???

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Author Topic: Dysautonomia???
Razzle
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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,

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-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.

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tailfeathers
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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:

www.dinet.org

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tailfeathers
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A must-see:

http://www.youtube.com/watch?v=8UPMYNkm6Bc

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Life+Lyme
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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.

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You name it, I've got it.
Full-time medical anomaly.

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Keebler
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http://www.publichealthalert.org/Articles/laurawild/backwards%20blood%20pressure.html

Backwards Blood Pressure

Laura Wild
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=077325;p=0#000000

CARDIAC INFO & SUPPORT
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Dove7
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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.

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'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson

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Keebler
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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.
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Razzle
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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?

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-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.

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lax mom
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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.

I still have a TTT and EEG to go.

I recommend looking into it.

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Keebler
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Dysautonomia can mess with ANY function, in various ways for different people, at different times, too.
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Razzle
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Unfortunately, there are no dysautonomia specialists anywhere near where I live, and I am unable to travel... [Roll Eyes]

More crud for my already over-loaded PCP...ugh. Good thing he likes challenging cases, LOL!

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-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.

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lax mom
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Does anyone know if dysautonomia can affect body temp?

Razzle: is there anyway you can forward your Dr the youtube of Dr. Blaire Grubb?

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lax mom
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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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Razzle
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Lax Mom,

Yes, I can give him the link to that video. Thanks for the idea.

I'll see what my primary doc says first, one never knows...but he may know of a dysautonomia expert here who isn't on the doctor list.

Thanks,

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-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.

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