Hi, Just real quick, please reassure me that you have this too! I was in church today and I was a little upset about something (not a big deal, this was before church).
I was jerking my arms and my legs pretty bad. I was afraid I was going to have a seizure. I had some stares, and I finally just said that I have Lyme Disease and ended up talking to a woman who had "Chronic Fatigue Syndrome" and another who has FM and CFS.
I am thankful God placed them in the room (I was in smaller room with a TV, felt to stimulating to be in the sanctuary with the music.
I guess since these symptoms have just kind of come on in the past 3-4 weeks, I am afraid I am truly dying.
Think the lyme is just migrating? Jerking has gotten worse since I did some transdermal Oil of Oregano (but I had a GOOD day last Thursday, felt very very close to 'normal'.
Thanks!
Ocean
Posted by cjnelson (Member # 12928) on :
my daughter gets this and i went through a stage of getting it a lot too....so sorry. know how difficult this whole thing can get... hang in there but do report your new symptoms do your dr
Posted by c3mom (Member # 16412) on :
Ocean, I have had MILD jerking before in my legs and arms and some head bobbing.
It is frustrating and scary especially when we are so young!! How bad were the jerking movements - thrashing vs bobbing?
When I was in church 4wks ago (when I had my panic attack issues) my head started bobbing while I was in church. I haven't had that sx in almost 2 years. Go figure.
C
Posted by disturbedme (Member # 12346) on :
Jerking and twitching is common with lyme. I get the jerking in my hand/arm once in a while, but thankfully it's not too bad. I do get muscle twitches like crazy though.
Posted by VB (Member # 16824) on :
I get this as well. Mostly twitching, but jerking too when it gets bad.
Magnesium has not helped and I pop them like candy. My LLMD is hesitant to prescribe the IM Mag Sulfate that has worked for several here.
If anyone has advice on how to make this go away, it would be much appreciated.
Ocean--are you currently taking any antibiotics?
I am taking 5 diff kinds of abx simultaneously. I'm hoping that after time they will go away, but I've had the twitches and jerks for 2 years... one year on abx and one yr before diagnosis.
They are definitely better since starting abx, but still pretty bad some days.
Posted by WildCondor (Member # 434) on :
You need magnesium!!! The RIGHT kind. Ask your LLMD to give you IV or IM injections Rx of magnesium sulfate. Orally take MagTab SR. If you take too much at once it can give you diarrhea. That's why the shots are better. Get a Rx and do the shots 2-3 x per week. it takes about a month to see results. Hope that helps!
Posted by Starfall1969 (Member # 17353) on :
I get the jerking and twitching too, especially when under stress.
Now I've also had what I thought was Tourette's since I was a kid (parents knew nothing about TS, so they never mentioned this stuff to the doctor),
the twitching just seems like tics, but at times they last so long that I get a headaches or sore muscles from it.
No idea what to do about it; I just live with it.
Posted by sammy (Member # 13952) on :
Hey Ocean,
You are not alone! I also experience episodes of twitching, usually occurs on the Left side of my face and my eye. It's pretty obvious and I can't control it or try to hide it.
I also experience tremors, usually in my hands. I have trouble writing, trouble picking up things, drop stuff, you name it. Makes work interesting. (Especially in my profession!) It is humbling.
Both the twitching and tremors occur more often when i'm fatigued. If I had a big day the day before, didn't sleep well that night, stress, and work seem to be bit triggers. I've also found that emotional stress can be just as wearing as physical activity.
Posted by TerryK (Member # 8552) on :
Rarely, focal parenchymal CNS lesions occur. The MRI may show punctate white matter lesions best seen on T2-weighted images; larger lesions occur infrequently. One brain biopsy showed increased numbers of microglia cells, rare spirochetes, and minimal inflammation. Transverse myelitis, movement disorders (extrapyramidal cerebellar, chorea and myoclonus), and hemiparesis can occur.
My brother has had that for years and he is still alive. So sorry you have it. It may go away with treatment.
Terry I'm not a doctor
Posted by Ocean (Member # 3496) on :
Thanks so much everyone and for the links!
I have seen UOS and it did remind me some of that with Mandy, gosh it was just scary. It's gone now, don't want it back though!
I did get a headache later, took a nap and woke up feeling nauseous.
I had muscle twitching really bad last fall, and I still it some, but not as bad, I've never had the jerking though, I felt like it was almost seizure activity. I did WAY too much this past Fri and yesterday went to my parents for a gettogether.
I've learned my lesson that I just need to lay low for awhile.
I'm glad that others have had this and lived through it =) It is just scary I guess. I'm trying to drink a lot today to flush stuff out if that's what may be causing it (toxins).
So sorry that you have all had this too
Thank-you for responding, it really truly helps!!!
Ocean
Posted by Leelee (Member # 19112) on :
Hi Ocean,
I went through a three or four month stage of this over the winter before I started treatment.
My twitches and jerks were limited to my right arm and shoulder. They were frightening and unpredictable.
I think it a part of this horrible disease we have. Hopefully this will be a limited symptom for you and will pass quickly.
I am sorry this has happened to you.
Posted by Ocean (Member # 3496) on :
Thanks Leelee,
3-4 months? Yikes! I woke up this morning feeling afraid it would happen again.I got a pretty bad headache yesterday afterward. The worst part of the episode was only a few minutes, but the total was about 4 hours.
Last night around 8 I was carrying a plate of food and announced to hubby that it had been several hours since I jerked. As I was announcing it, my left arm jerked and the food on the plate nearly slid off.
Hubby and I both laughed, and he said he thinks the bugs know...said the gov't is probably controlling them and I said, "makes sense the article DID come out in the paper today about Lyme and me!"
Who knows!! So sorry that you have had this symptom too.
Our 7 year old has a Doctor appointment today and I am afraid the jerking will start again, sigh....at least hubby will be there too (he's driving).
Anyhow...take care,
Ocean
Posted by Jasmin (Member # 19959) on :
I've been gone all weekend, and haven't read the
replies. I really HAVE to, because this has been
the most obvious of my symptoms. I'm really out
of it today so I'm not even going to attempt all
the replies. I'll bookmark it.
Sometimes I'm glad that at least people can see
this one and know I"m not faking...although my
son did think I was faking and the dr. thought it
was anxiety....but....
I very well relate to the church incident!!! I
don't want to go to church anymore because of
this. I have my torso wiggling all over the
place, and my son has Tourette's and swings his
arms or head, stomps his feet and grunts or
something. We are the church freak show. It's
embarassing...
I'm sick of the stares. Sometimes the back row is full.
So...like I said. I don't want to go while we are
both so wiggly. And magnesium isn't helping...
Posted by Jasmin (Member # 19959) on :
OK... I'm back.
I thought it was interesting that someone thought their muscle jerks was TS.
My son has TS...and the first time my head and neck jerked, I wondered if I had it too... but TS has to be diagnosed in childhood to be Tourette's.
I like the name myoclonus. I wish I could pronounce it. Do you know what kind of nasty stuff came up on Google when I searched for "muscle jerks."
My worst case happened about a month ago now. I went to the ER because I didn't know I had lyme and I didn't know what was going on with my body.
They gave me ativan intravenously. I don't know if they would have went away on their own like they did earlier that morning, or if the ativan worked.
The doctor said it looked like a seizure, but I was coherent so it couldn't be...so what do you know. It must be anxiety!
I left with a prescription for ativan which do not work.
Now I have some sort of myoclonus going on every day. But nothing seizure like, thank God!
Oh...my heart rate went up to 150 something when I had the seizure like one.
I wonder now if that was more than just my body being so active. I was not having a panic attack.
Posted by shelly23 (Member # 16124) on :
Hey Ocean, Just wanted to drop a hello.. You know me well enough to know this and weakness are my two biggest complanits..
First, we totally understand
Second i will attempt to give you good advice like you do for me, but i am not as good at it...
Ocean i think your a wonderful person who balances a home children and a husband...
Maybe yoy need a long warm epson salt bath with soothing music.. a night just for rachel.....
i don think that will solve our wonderful jerking movments, but maybe a little break will slow them dow...
think about it our bodies are an amuzement park all to them self .. twitching jerking heart racing.. un protiable
I hope all will get better... :0 Your a very smart level headed woman, if you need anything just pm
Thank you always for your help:0 your a true helper on lymenet
wishing you health coming your way.... health...health.. health....
Posted by kylasrain (Member # 12031) on :
Hi All,
I've experienced muscle twitches in my face/neck that look a lot like Tourettes before.Yup, its embarrasing (I teach high school students!!)
After some basic bllod tests were done and we discovered I have a B12 def., I began receiving injections. (Not able to absorb it in the intestines).
I now take inj. 3x week and this has seemingly stopped the twitching. When I stop the injections, it slowly come back more and more frequently.
So, have yo looked into B12? Its a common def. in Lyme patients...
Good luck! you are NOT alone.
Posted by Starfall1969 (Member # 17353) on :
Jasmin,
Lol, the church freak show.
I had a period of really bad twitching episodes in my 20s (long before I knew about Lyme and co), and my pastor at that time (kind of a jerk to beign with) felt he had to make a comment.
He said he saw my head bobbing like one of those bobble heads, and he was afraid my head was going to fall off my shoulders.
Really pastorly thing to say, you know?
I informed him rather coolly that I had a neurological disorder, thanks for the concern.
He never said anything again.
Posted by Jasmin (Member # 19959) on :
I guess I'm glad he didn't say anything again. I guess you're not you're not safe from staring eyes in the back row either.
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