posted
Yes Luke, I am still here. My latest thing is muscle jumping or is it twitching? Anyway, hands, arms, legs, feet, head and shoulder all through the night take turns jumping. I had to give up on the possibility of Lyme. I was told at Mayo in January after an EMG, I may have small fiber peripheral neuropathy. However I was not having the muscle problems when there.
I have had the Lyme blood testing 2 times last summer and some positive and a lot of undetermined bands were found. The Mayo neurologist had an infectious physician look at my Lyme testing records. He said the results were consistent for having at one time HAD Lyme. When I pushed my primary physician for re-testing he said "give it up, you don't have Lyme and you don't want Lyme".
So the jury is still out - no definite diagnosis for anything.
Posts: 25 | From Crawfordville, Fl U.S. | Registered: Jul 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Why are you relying on blood tests for Lyme DX? And Mayo is notorius for not Dx-ing Lyme. Have you been to a Lyme Literate Physcian?
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
"He said the results were consistent for having at one time HAD Lyme."
Were you ever treated for lyme?
If you were not you still have it and need treatment. It doesn't go away on it's own.
Peripheral neuropathy is a very common symptom of lyme disease.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Mathias is correct, Lyme does not go away by itself, if you were exposed to it and you have positive bands then you still have it.
You have to understand Lyme sometimes is not directly the cause of some of thses sicknesses. Sometimes Lyme damages your systems which then causes the bad things to happen. Sometimes Lyme weakens your immune system to the point that another virus comes in and destroys some of your systems.
As for me Lyme and its co-infections I believe are either directly or indirectly causing what is wrong with me now. Weather or not some of these major problems can be corrected and or reversed remains to be seen. I might not be around in a year or two due to the degenration of muscle i am experiencing with my tongue and neck muscles.
I twitch all over especially after i use my muscles or stretch them out. If i were you i would be extremely happy at this point seeing you have a diagnosis that is clearly related to Lyme damage or Lyme itself. Most of the time you can clear problems like this up to the point its bearable. I will trade positions with you any day.
I unfortunetly I have ALS presentation and my insurance does not believe in treating Lyme so I am screwed. for a Months worth of Biccillin I paid $1200 cause my script was not written by a keiser doctor. Its the only hope I have right now.
How can Lyme do this i thought the same thing, I was very scepticle but guess what, a co-infection test came back Erichliosis highly positive HGE 1:160 this proved to me that not only on the western blot band 45 was positive (means erichliosis) but my HGE test came back highly positive. Two tests backing this up. There is for sure something going wrong and this sickness is at the root.
The only problem I have is getting treated for it so far. If you dont get correct treatment you will never get better and could die. I am hoping Biccillin will pull me out of where i am right now. If not i will slowly waste away and docs will pronounce ALS was my killer. I am only 31 perfectly healthy before this.
I am from East Lyme Connecticut, Chances are Lyme Disease has been my killer thus far. Hopefully I can fight it off. So dont give up. It truely can cause these problems so many different ways. I am scared very badley everyday seeing myself waste away but can only do what you can do to survive.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
I was recently diagnosed with Motor Tic Disorder. The neurologist is running tests to be sure, but is pretty certain it is Lyme induced.
My muscles twitch and my limbs move without control. It can be as little as my index finger tapping along with music to my body thrashing in bed.
An integrative medicine specialist today suggested I take sublingual B-12. It's under my tongue at the moment. The neurologist would use something like Haldol to control it. I won't go that route.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Aniek, please let me know what the neurologist tells you about the muscle problem being caused by Lyme. What kind of B12 are you using under your tongue? No, I would not go the Haldol route either. I think that stuff will zonk out anybody.
Posts: 25 | From Crawfordville, Fl U.S. | Registered: Jul 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I have those symptoms, they've gotten worse lately even two years into treatment.
I've had burning nerve pain from small fiber peripheral neuropathy from Lyme, and had a little muscle twitching, but now have major twitching, muscle jerking, etc, especially when I try to sleep.
I would think this is all consistent with Lyme/coinfections because so many of us have it, and it's on the checklist of symptoms from my LLMD.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by 1332Nancy: Aniek, please let me know what the neurologist tells you about the muscle problem being caused by Lyme. What kind of B12 are you using under your tongue? No, I would not go the Haldol route either. I think that stuff will zonk out anybody.
Nancy,
There's not much to say from the neurologist. He basically said Lyme can cause all kinds of neurological symptoms, including tics. He doesn't know the actually mechanism of why Lyme causes tics, as medicine doesn't really understand the cause of tics in general.
The tests he is running are to make sure there isn't something else causing the tics we are overlooking because of the Lyme.
The B-12 I am takking is Jarrow Formulas Methyl B-12 5000 mcg. The bottle says to take one every 3-4 days. I'm taking it every other day.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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