posted
For those with widespread muscle twitches, how often do you twitch, does it occur in every single muscle and did you has a pos blood or spinal tap? I am being driven insane by my twitches! Also, what other symptoms/signs do you have? Thanks for any help!!!!!
Posts: 62 | From NY | Registered: Jul 2004
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posted
Like most Lyme symptoms twitching depends on many variables. Examples persons age, immune system, how long they have had it, what strain, how many strains, coinfections, where they were bit, etc. I had random muscles that twitched. The first one I remember started on my left temple and sometimes my legs. Strange because one minute it would be in my left bicep the next minute my lower back. I can say this after nine months on abx I don't have the twitching anymore. Actually the other day for about 4 seconds trying to go to sleep my right hamstring was twitching. Muscle twitching is few and far between anymore.
Yes, I had positive Western Blots and PCR tests. Symptoms vary with Lyme like I said previously here are some of my symptoms; Lightheaded, dizzy, motion sickness, floaters in my eyes, fatigue, pressure in the back of my head, nausea, reflux, loss of concentration, tinnitus, poor stamina, profuse sweating, sore throat on one side, swollen nodes, petichae, tingling in my hands and feet, stiff creaky neck, perceived teeth pain, I guess I will stop there.
Posts: 649 | From United States | Registered: Dec 2003
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posted
My right eye lid would twitch all the time. I also had twitches in my fingers my chest muscle has twitched. Not all the time thank goodness.
When i first got sick and didnt know i had lyme i had an open mri. When the machine went over my hed my face literally jumped all over i could not control it felt so wierd.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Stephanie,
Yes, transient twitching is totally one of the symptoms of lyme disease. You may also get a sensation that something is crawling on your skin in transient places mostly on the legs or feet. You may also progress or digress to bee or wasp sting sensations or cigarette burn sensations in various parts of the body mostly I notice them in my legs and feet but the twitching I still experience. You may even get a knifelike pain in any part of your body that mysteriosly has no reason for being there because you did'nt hurt or traumatize that part of your body and the ducks can't find anything wrong in that area but it is an extreme ACCUTE pain. This is the synaptical shortcircuiting that goes on in our brain and central nervous system...the best I can tell you is get a tems machine to confuse the messenger nerves. You do this by placeing the electropads at a place in between where you hurt and your brain. Like if I have knee pain I crisscross four electrodes on the back of my knee cuz there is like a Hub(a gang of nerves) located behind all of our knees. Placing the electrodes there will confuse the signal to the brain that it hurts pretty much anywhere on your leg beneath the electropads. I got this idea and modified its use by reading up on accupressure and puncture points. This technique will work and give you temporary relief...the pain doctor at the VA said it would eventually work forever if you where the dang electropads 24/7 for two months...but who the heck can do that. And given that the twitches and sometimes pain comes and goes it's impractical to place the electropads in the many different parts of the body that we get these transient twitches and pains. Hope this helps you out some...When I see your name I think of that cute movie with the robot "number five is alive"...sorry I guess you hate that by now......see ya later.........the zman
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Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I never heard of that robot movie. Anyway, I do also get sharp stabbing pains occasionaly out of the blue. I've had that for many years. Sometimes I feel like my tongue is twitching or tingling. If I look at it in the mirror it trembles and has tiny twitches in the middle. That really scares me the most. Anyone else have that?
Posts: 62 | From NY | Registered: Jul 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Have you been checked for Mycoplasma Fermentens?
Those symptoms sound very familiar to someone who was just finally diagnosed with it... especially the tongue twitches.
Just a thought..
------------------ Julie G. ___________ lymeinhell
Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
I started out with an eyelid twitch that didn't let up for 2 weeks....then came the widespread twitching. Trust me, I have twitched in places I didn't even know you could twitch. My twitching was every second of the day, every day for over a year until I began antibiotics....the hot spot for me are the arches of my feet. I still have widespread twitching, but it has decreased by at least 50% since being on treatment.
Western blot and urine antigen through Igenex both positive....never had a spinal tap.
Are you currently on treatment? Nothing helped my twitches except abx treatment. I had a neuro put me on elavil, neurontin, paxil etc.....only made things worse!
posted
That sounds exactly like my story!!!!!!!!! My blood tests were neg. Getting a spinal tues. Regardless of what the test comes back as I will get treatment. My neuro knows a Dr. that will treat me even with neg test results. I will do anything to get rid of these twitches. BTW Paxil nearly did me in--never again!!! Thanks for your post.
Posts: 62 | From NY | Registered: Jul 2004
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Paxil is awful! The first neuro I saw gave me a bunch of it because he obviously thought it was anxiety/depression causing the twitching and it just made me nuts. I started having severe myoclonus and the twitching got worse. I hope you get to the root of the problem. I know EXACTLY what you are going through!
TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
YES my tongue twitches and tremors, almost like a real fast vibration or electrical charge in my mouth.
It started on Zoloft. Ive used zoloft in the past and it did it to me then, also.
But, I have had twithes and tremors all over my body, especially under my chin and in my eye lid. Moved around. Sometimes I have them, sometimes not.
Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Be sure that your LLMD (I hope you have a good LLMD) tests your spinal fluid for absolutely EVERYTHING (lyme, bartonella, mycoplasma (all strains), fungal infections, etc.)!
My first LLMD did not test my CSF for mycoplasma. 9 months later I found myself getting another one and it yielded a positive PCR for mycoplasma.
Now 9 months of the wrong abx combinations(Zithro, Doxy, then Biaxin and Plaquenil with Rocephin) have made it very strong and abx resistant.
I've twitched from head to toe, including the tongue, 24/7 for the past 11 months. First time I've heard of of anyone else w/that symptom. Glad to hear I'm not alone.
[This message has been edited by Mathias (edited 26 July 2004).]
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yes ma'am I get the tongue twitching and I have had both neg and positive tests with serum depending where they send my blood. My urine tests have been the same. Spinal fluid was done after I relapsed big time in 98 and I like I would say 80 percent or more of we lyme patients got a negative for lyme with spinal fluid and later with synovial(fluid on the knee fluid)fluid. For some reason there is a very low incidence of positive tests with spinal fluid. I know there's a technical reason for this but to put it into laymans terms it(the spine) seems to be just an elevator to the brain. I usually tell most people not to bother with the spinal test so it won't give your neurologist another reason to doubt your infection. If you are experiencing these twitches and pains you already have brain/synaptic interference by the spirochete...but don't get scared so easily...these symptoms all though never went away for me on all types of anti seizure meds like all the ones mentioned above and TOPIROMATE(topomax)...they did lessen considerably with IV treatments. the zman
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
I too have twitching problems. Recently started IM Magnesium, but no results so far after about 10 shots. The thing that has worked for me for the last 5 years is Sinemet, a parkinson's drug. Unfortunately it has gradually lost its ability to work for me in the last year. But one tab still provides about 3 hrs of relief. No side effects at all. Posts: 252 | From NJ USA | Registered: Mar 2004
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posted
I did the spinal but my neuro said he couldn't test for mycoplasma. I will find a way to get treated regardless of test results but would feel better if I get a pos spinal for Lyme because this twitching is driving me insane & I need an answer!
Posts: 62 | From NY | Registered: Jul 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
You are letting the neurologist test your spinal fluid for lyme?
Which lab is he planning to use?
That sounds like a big mistake to me.
You need the fluid sent to a reliable lab like Igenex or MDL which specialize in testing for lyme and other TBD's.
If my spinal fluid was not tested for myco, I would still be getting Rocephin and Biaxin and neither help fight the strain that I have. So I'm a big believer and living proof that you need to get tested for that.
[This message has been edited by Mathias (edited 28 July 2004).]
posted
Would a blood test pick up the mycoplasma? What other symptoms do you have besides the twitching? I don't want to go through another spinal. What lab did you use? I think the hospital does the tests but I am not certain. I will call them tomorrow.
Posts: 62 | From NY | Registered: Jul 2004
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Mathias
Frequent Contributor (1K+ posts)
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posted
It may or may not.
Many people have had negative blood tests only to have things show up later in their spinal fluid (I'm one of those people). The opposite is also true (positive blood tests and negative spinal fluid, even with neuro lyme).
If you are going to go through the pain and effort of having a spinal tap performed, you need to have all of the TBD tests run at the right lab. Otherwise you could possibly have to go through with it again.
My latest set of tests were run at MDL. Previous tests were done at Stonybrook.
[This message has been edited by Mathias (edited 28 July 2004).]
posted
Magnesium. Try it. My doctor presrcibed IV mag drip for my tremors and twitching and it helped more than anything else.
If you do a search here with the word 'magnesium'in the search string you will get lots of references as to the importance of it relative to nerve function.
Posts: 43 | From Canada | Registered: Dec 2003
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