posted
What happens when you're locked in?
Posts: 82 | From New York | Registered: Feb 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
When I'm locked in I can't move any part of my body except I can move my eyes and make vocal sounds in my throat.
Usually at some point my eyelids will close and I can't open them, and my jaws clamp tightly shut. My body is very rigid.
Occasionally I can slightly wiggle my toes.
It may appear that I'm in a deep sleep except I'm trying to communicate with my throat noises. Sometimes I can't even do that.
This frustrates and frightens me and my husband terribly. He watches me the entire time to be sure I'm still breathing, but meantime my kids are running wild.
My LLMD has told me to up my antibiotics and do HBO. Fortunately, due to donations from family and friends, I have an in-home chamber.
I had stopped doing HBO because I was treating bartonella for so long and my husband and I had heard that HBO is contraindicated for bartonella.
The borrelia has reared its ugly head because I neglected treating it for too long.
Hopefully my LLMD's suggestions will prevent further "lock-ups".
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
OH my ! I'm so sorry you're going through this. Yes, maybe it IS from the Lyme since you haven't been treating it.
How old are your children??? Try to reassure them that you are OK [when you come to, of course]...Instruct your husband to say reassuring things to them while you are "out"....even though I'm sure he himself is in a panic at that time!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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merrygirl
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posted
That is terrible!
Is it like a seizure at all?
Posts: 3905 | From USA | Registered: May 2007
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hshbmom
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posted
I'm sorry you're going through this. It would be scary.
Did Bea ever find your thread? Her help would be invaluable right now.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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hshbmom
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posted
I sent you a private message with bea's contact information.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Andie333
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Member # 7370
posted
First, lymelady, I'm so sorry you're going through this. I'm taking ceftin as my primary abx, too, and I had a similar kind of experience during my first two ceftin herxes.
I didn't call it "locked in" though...it seemed more like paralysis to me. I couldn't move anything (except my eyes), but I could breathe and still speak. I was taken via ambulance to the hospital.
The entire incident lasted about 4 hours. And, as I said, it happened twice.
And not ever again. Not even in a mild form.
Though this all seemed pretty harsh, I didn't cut back on the ceftin. But, of course, I let my LLMD know...
So I definitely have a sense of what you're going through, and I also know how really scary all this is.
Hang in there, and feel free to send me a pm, if you have any questions or anything.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Itsy_bitsyone
Unregistered
posted
Sounds like Cataplexy. Sorry you have to go through that. My cataplexy is not that severe. But when you say you can wiggle toes, fingers, and eyes, sure sounds like severe cataplexy to me. When it happens to me, so far only at night in bed for a few minutes, I can only do that and also flex my glutes sometimes.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I experienced this and it was horrible. Here's some information I found I have saved that might apply....
Ann - OH
1: J Neurol. 1990 Feb;237(1):51-4. Related Articles, Links
Borrelia burgdorferi myelitis presenting as a partial stiff man syndrome.
Martin R, Meinck HM, Schulte-Mattler W, Ricker K, Mertens HG.
Department of Neurology, University of Wurzburg, Federal Republic of Germany.
Eight weeks after a tick bite, a 33-year-old male patient presented with stiffness of one leg together with spasmodic painful jerks resembling stiff man syndrome. Isolated myelitis of lumbosacral segments of the spinal cord, apparently confined to the grey matter, was diagnosed and its spirochaetal aetiology confirmed by serology and CSF findings. Oligoclonal IgG bands in CSF specific for Borrelia burgdorferi were found. Thus, there is evidence that B. burgdorferi ist able to cause a localized myelitis, probably of spinal interneurons, presenting as a partial stiff man syndrome.
1: Requena I, Arias M, Pardo J, Portela M, Alvarez JA. Related Articles, Links [Syndromes of continuous muscular activity: report of a central case (stiff-man) and a peripheral case (neuromyotonia) associated with neuroborreliosis] Rev Neurol. 1995 Jan-Feb;23(119):129-33. Spanish. PMID: 8548606 [PubMed - indexed for MEDLINE]
www.stiff-man.org/ [If you go here, you might be able to ask some questions about other people with Lyme disease who have experienced those symptoms. Ann]
JY Matsumoto, JN Caviness, and KM McEvoy The acoustic startle reflex in stiff-man syndrome Neurology 1994 44: 1952-1955. [Abstract]
from:www.thelancet.com/journal/vol348/iss9027/contents Improvement of stiff-man syndrome with vigabatrin [Order]
Autoimmunity Underlies Several Rare Neurological Disorders
WASHINGTON, DC, Nov 19 (Reuters) - Attendees of the 26th annual meeting of the Society of Neuroscience listened to a panel of experts who discussed autoimmunity and neurobiology yesterday.
One of the panelists was Dr. Jerome Posner of Memorial Sloan-Kettering in New York, who was the first to describe the paraneoplastic syndrome and to theorize that there may be a link between autoimmune disease and cancer. Dr. Posner said that certain proteins are shared by both the central nervous system and some cancers. The body mounts an immune response to the cancer, but there is an associated immune response to the CNS proteins. In the case of the paraneoplastic syndrome, Purkinje cells are damaged causing ataxia, incoordination and other neurologic disturbances. Neurologic symptoms of the autoimmune disease are often picked up by clinicians as much as a year before the cancer is diagnosed, Dr. Posner said, and he speculates that the immune response that attacks the brain may also keep the cancer under control for a time.
Dr. Michele Solimena of Yale described the rare "Stiff-Man Syndrome," which primarily strikes adult women and which causes severe muscle rigidity and painful muscle spasms. He pointed out that more than 50% of affected patients have insulin-dependent diabetes mellitus, and he believes there is a link between the two conditions. Dr. Solimena reported that the autoimmune target in Stiff Man Syndrome is an enzyme that controls muscle activity; pancreatic cells also produce the same enzyme.
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Lymetoo, my children are 7 and 4. They DO get frightened when this happens. It's a great idea to discuss with my husband what he should tell them and how we should handle things when I get locked in.
Merrygirl, I do feel like it is seizure-like because I frequently have spasms and posturing as well as the frozen state. I never lose consciousness, though. It may be sub-cortical seizures.
Andie, I'm sorry that happened to you. Unfortunately, my first episode of being locked-in occurred BEFORE I started ceftin. So, I don't know if ceftin is just making it worse.
This locked-in business is happening to me nearly every day lately.
I will look up cataplexy, Itsybitsy.
And Ann-OH, thanks for the information.
Bless you all!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Greatcod
Unregistered
posted
Sorry that you have to go through that, LLNY. Genuinely terrifying. I had no idea that Lyme could do that to people.
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I just wanted to know let you know that I've had the locked in thing also. It was actually mindblowing for me to see someone post about it. It's scary i know. I sent you a private message just to let you know.
Also has anyone else out there experienced locked in state from lyme? -Dawn
Posts: 6 | From Westchester County, NY | Registered: Apr 2007
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I can't move anything but I can hear everything that goes on around me. Mine would only happen in bed.
I would have to concentrate really hard and keep telling a part of my body to move. If my husband would notice it happening he would sometimes give me a good shake and that would end it quicker.
I hope this goes away fast for you. I found it to be terrifying.
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! I'm so sorry you're going through this. Yes, maybe it IS from the Lyme since you haven't been treating it.![[group hug]](graemlins/grouphug.gif)
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