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» LymeNet Flash » Questions and Discussion » Medical Questions » Who here has Dysautonomia?

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Author Topic: Who here has Dysautonomia?
cutie
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I have almost all these symptoms. Can you have dysautonomia in addition to Lyme or is it really just Lyme sx I'm having?

My main complaints are fatigue, jerky movement disorder, and exercise intolerance. Whenever I exercise I have a complete relapse of sx. Very frustrating!

Any imput would be appreciated.

Thanks,
Cutie

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Cutie

Posts: 125 | From Atlanta | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
vachick
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I have dysautonomia and the very same questions. Not sure if Lyme caused dysautonomia or vice versa. Also have Fibro but am pretty sure Lyme caused that.

I have muscle twitching/jerking and exercise intolerance (plus leg goes numb but that is probably something different) with muscle fatigue/weakness that docs can't figure out.

Posts: 331 | From virginia | Registered: Nov 2005  |  IP: Logged | Report this post to a Moderator
cutie
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Sounds just like me! Docs are stumped on the exercise thing. My GP told me to "eat protein first". Now I'm afraid to do any exercise and I hate it because I used to love aerobics, walking, rowing.

I feel so unhealthy but the exercise is just not doable! Also makes the jerking/twitching so much worse!

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Cutie

Posts: 125 | From Atlanta | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
arg82
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I was diagnosed with neurocardiogenic syncope (a form of Dysautonomia) in Feb. 2005, just over 7 years after being diagnosed with Lyme disease.

I began having Dysautonomia "episodes" soon after my Lyme symptoms got bad, though, it just took a long time to have a doctor take those symptoms seriously as something that could be diagnosed and not just part of Lyme disease.

I had a tilt table test done and that's how I was diagnosed. My blood pressure is normally within normal limits but when I stand up for too long or in some other situations, it plummets (during the tilt test it was recorded at 54/26 when my symptoms were in full swing).

I also have some problems with fast heartrate which I believe may be POTS (postural orthostatic tachychardia syndrome - another form of Dysautonomia) but I don't have that diagnosis right now.

I believe that Lyme disease can cause damage to the vagus nerve which is what is responsible for Dysautonomia. So Lyme can cause Dysautonomia and, in some cases, successful Lyme treatment can greatly help or even resolve Dysautonomia symptoms.

For more information on Dysautonomia, go here - http://www.lymeinfo.net/autonomic.html .

I hope that helps and you're able to sort things out!

Peace and healing,
Annie

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johnnyb
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Yes, cutie, I often feel better during exercise, but later on in the day, sx come back.

Also, immediately after exercise, the old eye-twitch that I otherwise NEVER get anymore comes back with a vengeance. At least until I've rested a bit.

It does suck, because as I try to exercise my way to feeling better, I hit a plateau where my sx come back enough to make me stop again.

So, I know exactly what you mean.

- JB

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minimonkey
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Just my non-MD opinion here, folks --

I would guess that lyme and/or co-infections are responsible for the dysautonomia (sp?) --

I know that when I had a FMS diagnosis (pre-lyme dx), and was researching that, I found that lots of "FMS" sufferers have this --

As we all know, Lyme can disrupt pretty much every system in the body -- and the autonomic nervous system is such a delicate balance of things, that one imbalance can throw the whole system out of whack.

I'm also more and more convinced that those of us with chronic immunosuppressive illnesses (like Lyme) have many things going on in the body -- other infections that are opportunistic, reactivation of latent viral infections, etc. So, directly or indirectly, I'm betting the POTS is secondary to the Bb infection.

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"Looks like freedom but it feels like death..
It's something in between, I guess"

Leonard Cohen, from the song "Closing Time"

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lymednva
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I have Dysautonomia, in the form of NMH. I've had symptoms dating back 30+ years, which precedes my endocrine system going out of whack and many others that have since gone awry.

I agree that it is caused by Lyme, not the other way around. I was originally dx'd with CFS and FMS in 2001, but have been receiving Lyme treatment for three months, now.

I can trace my Lyme symptoms back 40+ years.

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Lymednva

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Travlr1
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cutie,

I can certainly empathize with you. I have up to 50 bpm heatrate changes from laying down to upright position.I actually hypertense instead of my blood pressure dropping even though the heartrate can go to the 130's.Do a search on POTS syndrome.There is a great site out there, but I can't remember the URL. [bonk]

Take care,

Travlr1

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LookingforHope
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Hello,
I have POTS (Postural Orthostatic Tachycardia Syndrome), and NCS (Neurocardiogenic
Syncope) both of these are forms of Dysautonomia.

See this is new to me as I am under going the blood work right now for lyme's. They think now that I also have lymes.

I found this:

"Parasites can transmit diseases, such as Chagas, that can cause POTS symptoms. Some patients report developing POTS after having Lyme disease."

For the full information go to:

http://www.dinet.org/what_causes_pots.htm

Dinet.org- you can find alot of info regarding Dysautonomia

I hope you get to the bottom of everything!

Posts: 51 | From Des Moines, Iowa | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
   

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