posted
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
-------------------- 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
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
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.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
@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
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posted
@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
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posted
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
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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
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posted
off topic: OMG, I have never seen (noticed? {lol}) them drop their tutus before, they just did, they really are tired, poor things!
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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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? 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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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posted
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!
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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posted
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.
Posts: 424 | From Connecticut, USA | Registered: Nov 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
This article is essential reading to gain an understanding of what it's like to HAVE lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For myself, the exercise intolerance detail here helped expain a lot of what can happen with a "shut down" and what can help:
posted
@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
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
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.
posted
@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
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