posted
Do you notice it gets worse with activity or stress, exercise?
I was reading on wemove.org that Lyme Dis. can cause a lesion on the spinal cord that will cause myoclonus.
Have you had a MRI or something of your spinal cord? My neuro said to not worry about my movements. I call them "little jerks". But you can't see them, I can only feel them.
Anyone?
Thanks, Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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posted
I have myoclonus and the "little" jerks have gotten progressively worse over the last two years. I fall down with my jerks and tigh now am unable to work.
I find that noise and crowds, fatigue, stress, and fluctuations in hormones during my cycle increase them.
Matter of fact I just went to a new neurologist yesterday who noticed that even testing my reflexes sets off body jerks. Unfortunately I haven't found a medicine that works, yet.
If anyone has a good med for myoclonus, please post it. I have tried depakote, keppra, klonopin, lyrica and am just starting zonegran.
Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10181 | From Illinois | Registered: Aug 2004
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Mine are getting worse, too - in fact, I didn't even have them until two years into treatment.
Both stress and exercise make them worse - so does that period of trying to fall asleep or wake up.
I've only tried Klonopin so far at a very low dose and it's not doing much.
I had an MRI of my spinal column when I became symptomatic with Lyme and the local ducks assumed MS because of course there is no Lyme in San Diego! Anyway, the spinal MRI was clear, the brain MRI had lesions.
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
My LLMD diagnosed myoclonus and did order MRI's to look for lesions. It got worse so I went to a nuerologist. The neurologist said it is motor tic disorder and not myoclonus. He does believe it is from Lyme, but it is a different type of movement.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I have Dystonia with Myoclonic movement. The symptoms first developed when I was in medical treatment. It turns out that I was on a bad injectable drug. In addition to inadequate and incorrect treatment, the dystonia also results from drug toxcicity.
We've found that staying away from drugs that have neuro side effects helps. For example, we'd use cefuroxime axetil, the generic form of Ceftin, over other cephalosporins such as Omnicef that may cause seizures, and we steer clear of quinolines.
High dose CoQ10 helps, as does IM or IV MgSO4 combined with B6. Injectable Glutathione (compounded with ATP) and IV glutathione have also been very helpful. I had developed severe athetoid movements in my hands (claw-like movement), and was also having problems with my feet as well. IV pushes of glutathione followed by an IV push of Mg/B6 have definately helped with the spasms, particularly with the spasms in my hands and feet, and have also helped with pain. We have found that you need to increase the dose very slowly, so as not to cause an increase in spasms, nausea, and migranes.
Over-exercising makes the spasms much worse, as does stress, bright lights, herxes, secondary infection ect.
Posts: 183 | From US | Registered: Feb 2004
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posted
Sometimes the jerks are so bad that it scares me. They are especially bad if I try any kind of exercise (even light walking) and with stress and when I'm feeling tired. I hate them!
I take Klonopin and this does seem to help a little. I am just afraid that they are going to get worse. Do they get worse or do they get better?
I've been on Lyme tx for 2 weeks now and have not herxed. Is this weird?
Thanks, Cutie
-------------------- Cutie Posts: 125 | From Atlanta | Registered: Dec 2005
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posted
Cutie, My jerking seems to come and go. I am trying to pinpoint the triggers as well.
So far I have figured that lack of sleep, stress and dehydration are factors. I also have a weird theory that hormones may be factoring in since my jerking gets worse right before my period starts. Bizarre.
Posts: 331 | From virginia | Registered: Nov 2005
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Are your myoclonic jerks getting worse? If so, that may be your herx. Hubby has much more problems with myoclonus and tremors and seizure-like episodes when he switches meds.
My suggestion would be to take the COQ10 (400mg minimum), Resveratrol (Japanese knotweed source) and phosphatidylcholine. Also other antioxidants that cross the blood-brain barrier such as pychnogenol.
Tremors and myoclonus are definite signs that the Lyme and coinfections are in your brain and nervous system.
Klonopin is a very strong med -- hubby could not take this due to intolerable mood swings. He does take IV Ativan which does help.
Might also want to check and see if you have hypercoagulation -- can aggravate this problem.
This is not medical advice, but my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
My tics have gotten worse and better at times. They got worst a couple months ago. I had stopped Lyme treatment because of other issues, and the tics came back with a vengeance after a few months.
They got much, much worse when I first started Flagyl. That's what brought me to a neurologist. The tics could be so fast that I actually thought I was having tremors.
Reducing stress has made a huge difference. I always live in super stress mode - full-time job and part-time law school. Well I cut back on work to just 3 days a week and I'm taking a very easy class this summer. I've seen a huge decrease since finals and changing my work schedule.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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