posted
Well I have had other places but now I get my fingers going back and forth. Calves also twitch. Anybody get this?
Posts: 355 | From NY | Registered: Jan 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Oh, yes, I've been getting a big increase in this the last year. Fingers individually, the whole hand, feet,abdomen, plus the usual leg twitches I've had for years.
Mine were improving with Lyme treatment, seem to have gotten worse as Bartonella turned positive and with Bartonella treatment (that I'm still on).
Weird, isn't it?
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
Some people get mycolonus from Lyme, which is uncontrolled movement of whole limbs or the body.
I got motor tics that developed. Often it would impact just some fingers, they would just move around without me being able to stop them. They are pretty much gone now. I credit abx treatment.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Hi- I'am a newbie and I have mycolonus. I started with finger twitches and numbness about 6 years ago. Thought it was due to painting. NOT! I just officially got a dx and had 3 wks oral doxy. A few weeks later I went into a wild arm raising and jetters situation at the grocery store! Never happened quite like that before, of course very public! I had to laugh. It was kinda funny. Now I move n groove and my family and I laugh - not disrespectfully, just to keep in in perspective. Bottom line = I AM IMPROVING.
Posts: 19 | From woods | Registered: Jan 2007
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posted
Hi- I'am a newbie and I have mycolonus. I started with finger twitches and numbness about 6 years ago. Thought it was due to painting. NOT! I just officially got a dx and had 3 wks oral doxy. A few weeks later I went into a wild arm raising and jetters situation at the grocery store! Never happened quite like that before, of course very public! I had to laugh. It was kinda funny. Now I move n groove and my family and I laugh - not disrespectfully, just to keep in in perspective. Bottom line = I AM IMPROVING.
Posts: 19 | From woods | Registered: Jan 2007
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
oh yes and this is quite annoying isnt it? when your fingers actually move from side to side--i really dont like that!
I have had it come and go in all muscles throughout body. It got better after treatment in 2001 but hasnt gotten better since relapse in 2004.
well, that isnt true, it does get better, but it comes right back again.
it is a common symptom of lyme and co's
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Yes, I've got muscle twitches and had/have myoclonus. Provigil gave me horrible myoclonus, and brought it out. My left thumb seems to move on its own a little.
I also get twitches and jerks all over. My eyelids are probably the most annoying. Legs twitch quite a bit too.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
I used to twitch 1000 or more times a day,usually my next to last finger,or my pointer.Soon as you look at it it stops.My calves looked like bugs crawling around in them. My eyes would go for days at a time. I'm pretty sure it is caused by the sheathes around the spinal cord,inflammed due to the infection from the lyme. Mine went on for 10 years,then i treated myself for babesiosis. I got arteminisinin,and andiographis,in bulk form from first chinese herbs,and in 2 months they were gone,i get them seldomly on occasion.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yep I have twitched all over and after 6 going 7 years treatment down to thumb or pinky fingers twitching once in a great while. Besides abx's I think what has helped with it getting better is 500mg magnesium andcq10 every other day and complex B vitamins everyday has helped repair 98 percent of it. It takes time though.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
yes, magnesium is wonderful! helps alot. somehow when I go in to get checked and "they" move my right arm, my left legs kicks out. etc.etc.. nothing is lined up in my neuro. everyday a new day, not dull for sure. anyone have stomach issues that could relate to major movement?, ie: not just twitches but big seizure like movement?
Posts: 19 | From woods | Registered: Jan 2007
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
quote:Originally posted by Gypsy Girl: yes, magnesium is wonderful! helps alot. somehow when I go in to get checked and "they" move my right arm, my left legs kicks out. etc.etc.. nothing is lined up in my neuro. everyday a new day, not dull for sure. anyone have stomach issues that could relate to major movement?, ie: not just twitches but big seizure like movement?
I have occasional abdominal "seizures" or myoclonus where my body uncontrollably goes into almost a sit-up crunch - very scary. Is this what you are talking about?
Sometimes in bed I'll get practically a full-body or one-sided jerking that lifts me off the bed.
I think I have vagus nerve involvement which is adding to a lot of this.
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
I also have autonomic neuropathy, which is a problem with the autonomic nervous system. I have been treating this with a combination of supplements, including high doses of Vitamin C (6000 mg/day), Magnesium, and B-12 with Folic Acid.
I wonder if this may have calmed down my motor tics. Autonomic nervous system disfunction seems to occur in a lot of Lymies. It makes it very difficult for the body to handle stress, and my motor tics would really get bad when I was stressed.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Jill - Yes! I found someone else who has this! I'm sorry, it's just so strange. I have serious neuro involvement. I was told by a md that this is similiar to those who have some types of encephalitis infections. I think basically it means we have an active infection. duh! Have you had any rubella testing or streptocccus in labs? just curious, have my dumb theories on that. Encouraging note: I have gotten better over the last 6 months, but this is my herx, plus others. My family has forbidden me of going out past dark because I look drunk. (I don't drink) I do a waist bend-over thing when I'm not lying down. It's the same thing- just when during the day, walking out and about. Fun.
Posts: 19 | From woods | Registered: Jan 2007
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Gypsy Girl,
I'm sorry to hear you have this, too, but now I don't feel so alone.
I haven't had the rubella or strep testing you mentioned. But when I had a brain MRI (I already had a Lyme diagnosis at that time, but my internist just kept wanting to rule out MS anyway), the radiologist said my brain showed someone who had either Lyme or encephalitis.
So the weird stomach crunch myoclonus must be part of, as you say, an active infection.
I will say that all of this has worsened as my Bartonella has been getting worse, but that's my personal theory of what's triggering what with me.
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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posted
Gypsy Girl- I am very interested in why you asked if anybody had been tested for Streptococcus? What type of test also? A general blood test?
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
cT - not the simple blood test. The "other" test that you bring to the lab in a brown bag. I'm not a dr. but my understanding is that there are lots of types of encephalitis, incl Lyme,that could do these strange jerks. Strep in intestines is kinda normal, but there's a different type of strep that is NOT normal in intestines. It can do that also it seems. I had that also. Baterial infections and parasites can also cause encephalitis....which could cause the jerks.
Posts: 19 | From woods | Registered: Jan 2007
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posted
cT - I forgot to ask about Provigil... have you tried it again recently? I had the same problem,and stopped it. Then tried it again and it was ok for smaller doses. Then I went off everything and have not re-tried it. It was good stuff, except for the jerks. just wondering.
Posts: 19 | From woods | Registered: Jan 2007
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posted
Gypsy Girl - No I have not tried provigil again. I was not too impressed with its effects anyway, and it had other side effects. Lack of efficacy, weird emotional blanks, intensified staring, etc.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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I'm not a dr. but my understanding is that there are lots of types of encephalitis, incl Lyme,that could do these strange jerks. Strep in intestines is kinda normal, but there's a different type of strep that is NOT normal in intestines. It can do that also it seems. I had that also. 
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