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Shiela
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Just wondering if anyone else here has experienced collapse. I've had bouts when my body totally collapses like a corpse for 5-12 hours. I can only hear and it carries on autonomic functions. I've tried to say something but it's so soft no one can understand me and most of the time can't even do that. I might be able to get out 2 words if I'm fortunate.

I've been evaluated for a potassium channelopathy but that was negative. One doc wants me to be evaluated for Myasthenia Gravis but it only started after I got Lyme.

I'm on Clarithromycin.

___________________
Tested positive ++++ Band 39 IGNEX

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I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

Posts: 149 | From Maine | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Summer3
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I get something similar. I'm also on Biaxin. I can usually still talk, but my body feels completely numb and almost paralyzed. Sometimes I can't even hold up a spoon or a book.

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http://www.lymepie.blogspot.com

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sutherngrl
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One of my worse symptoms was the feeling of collapsing. I absolutely had to lay down and couldn't do anything. I don't think it was a severe as what you are experiencing, but it was pretty bad. It improved after a few years of lyme treatment.
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Lymetoo
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Sadly, MG is possible.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95978 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Shiela
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@Summer3--Don't give up. Keep fighting those nasty bugs. Research is being done to find a cure.
http://www.molecularalzheimer.org/
We fight together.

@sutherngrl--Thanks for that encouragement.

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

Posts: 149 | From Maine | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Shiela
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@Lymetoo--Love your dancing girls.
Is MG Lyme induced? Or do you mean they could just happen to both come on a person.

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

Posts: 149 | From Maine | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
didogs
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I used to have that feeling too but it has gotten so much better with treatment. Keep on treating!!
Posts: 238 | From new england | Registered: Feb 2013  |  IP: Logged | Report this post to a Moderator
Shiela
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@didogs--THANK YOU!!

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

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Lymetoo
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Thanks, Shiela! Those tutus are about 9 yrs old. They must be SO TIRED by now!! [Big Grin]

Not sure about the MG.. but I think a few people on the board have been dxd with it. You might want to contact Tracy9.

--------------------
--Lymetutu--
Opinions, not medical advice!

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ESG
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off topic: OMG, I have never seen (noticed? {lol}) them drop their tutus before, they just did, they really are tired, poor things!
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seibertneurolyme
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I would definitely check into adrenal fatigue. It affects different people in different ways.

Bea Seibert

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Lymetoo
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quote:
Originally posted by ESG:
off topic: OMG, I have never seen (noticed? {lol}) them drop their tutus before, they just did, they really are tired, poor things!

-
LOL.. where ya been? [Big Grin] Those were custom made for me by a former member. Tincup has been fussing at me for years because I keep dropping my drawers in public!

Hey, I got nothing else to do! [Razz]

--------------------
--Lymetutu--
Opinions, not medical advice!

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ESG
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I think this "discovery" means my brain is indeed clearing up .... after how many years?!! lol

Goes to show that we concentrate on what we can and ignore the rest - today I finally noticed something that has been dancing before my eyes for years: so happy!

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ESG
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ON TOPIC: one word of caution: I did have a serious spinal problem that had nothing to do with Lyme Disease and I did not know it for years. We, ourselves, our family, our LLMDs, can get caught up in the complications of our tick-borne symptoms and overlook something else .... that is a lesson I learned.
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Keebler
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-
Sheila,

Yes, I've had those hour long total collapses so intense that I could not move my arms or legs. It's not that uncommon with lyme, really.

Other things can cause this, of course, but let your LLMD know about this.

Adrenal support is a good place to begin for now, though.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT


How & Why this happens?


http://www.thehumansideoflyme.net/viewarticle.php?aid=65&PHPSESSID=c0adeb1d4869cfb5a38f6447d9ed7a96

When to Suspect Lyme by John D. Bleiweiss, M.D.

This article is essential reading to gain an understanding of what it's like to HAVE lyme.


lyme neurotoxins are very similar to botulism. That can also explain the shut down of muscles and nerves. Some detail:

http://www.thehumansideoflyme.net/viewarticle.php?aid=65&PHPSESSID=c0adeb1d4869cfb5a38f6447d9ed7a96

When to Suspect Lyme by John D. Bleiweiss, M.D.

This article is essential reading to gain an understanding of what it's like to HAVE lyme.
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Keebler
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-
For myself, the exercise intolerance detail here helped expain a lot of what can happen with a "shut down" and what can help:


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

CARDIAC INFO & SUPPORT

Includes:

Dr. B's SAFE EXERCISE and PT Rehab guidelines,

EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that)

ADRENAL, CARDIAC, MITOCHONDRIA & MYELIN SUPPORT - that all helps movement better work for us

Styles discussed: Pilates; Qi Gong; Tai Chi; Yoga; water; strolling; etc.
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Shiela
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@Keebler--THANK YOU for that valuable information!

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

Posts: 149 | From Maine | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
lax mom
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For me it's similar to the post-exertional malaise of ME/CFS. I've seen it described as Post-exertional neuro-immune exhaustion, as well as metabolic freeze.

I never know when I'm doing "too much".

I go lie down and am in something similar to a coma...completely non-functional. Something deeper than sleep. My body has shut down so that it can only do the metabolic functions needed to keep me alive.

That happened frequently when I was in a push/crash cycle (and also when I started several new meds in the past). I would do as much as I was able, then I would crash.

Now I have read about adrenaline surges and how just because my body can physically/mentally complete a task, that doesn't mean I had the energy reserves necessary. I was using borrowed energy from an adrenaline surge and my body will then shut down to compensate.

For example, in March or April, I had a Dr's appt 2 hours away. I hadn't been able to drive my son to daycare due to exhaustion, let alone drive out of town on my own.

No one else could take me, so I drove myself 2 hrs there...had a Neurology appt with painful EMG/NCS. Then drove 2 hours back (stopping at a rest stop and napping for an hour at the half way point.)

When I got home, I was shocked that my body was able to complete that task...then I paid for it. I truly think it took me 2 months to recover back to my baseline illness.

This was a large example, but this type of thing happen is I push my body in smaller ways: ex. standing too long, using too much emotional energy or using too much brain energy, etc, etc. The link below has a great description.

Try to notice if there are times when you are borrowing energy that you don't have due to adrenaline surges.

http://www.hfme.org/adrenalinesurgetips.htm

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♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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Shiela
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@lax mom. Interesting. Each of my episodes of shut down occurs (while awake and conscious) right after activity. I've always been a pusher.

--------------------
I'm not there yet but I'm closer than I was yesterday.----
Lyme Band 31,41,58. Being treated for Lyme and Bartonella.

Posts: 149 | From Maine | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
   

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