I have had chronic Lyme for 11 years, with many neurological symptoms. After the tick bite and a stiff neck, I developed muscle twitches, muscle weakness, vision problems, severe headache and fatigue, tingling of the fingers, toes, and tongue, limb tremor, brain fogginess, and other problems. Antibiotics cleared these up, over a few years, by 90%, although a Jan. 2005 brain MRI showed MS-like lesions, and I have nerve damage in my legs and arms. I have recently relapsed and am on 2 grams/day of Rocephin. During the Rocephin infusion (but at no other times), I often experience large jerks of my arm and leg muscles. Once, both my legs jerked all at once, almost like a spasm. These are not muscle twitches or cramps, but large jerks of all of the muscle, or most of it. Has anyone experienced something similar with Rocephin and Lyme? Thanks.
Posted by janet thomas (Member # 7122) on :
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Posted by hiker53 (Member # 6046) on :
Wish I could help you. I have experienced the jerks you are talking about. They are called myoclonus, but I have never taken rocephin. God Bless. Hiker.
Posted by trailsgrl (Member # 7285) on :
YES! I have had those on rocephin. But I also have had those when I've been herxing on other meds. I think it was worse on rocephin though. Sometimes it would happen with a MAJOR ZINGGGG like being shocked electrically. Like a nerve conduction study. Ever had one of THOSE torturous things?
Dont know what they are really, sorry. But you are not alone. Trails
Posted by Carryon (Member # 4951) on :
DEEJ,
Sorry to hear that your Lyme has relapsed. I had the large muscle jerks (myoclonus) for more than 3 years before I found out that it was due to Lyme. I was on IV Rocephin (2 grams/day like you).
I found that for the first 4 weeks the infusions did make the myoclonus worse during the infusion. Gradually this stopped. I do not have myoclonus at all now and have been off all antibiotics for 9 months. I have my fingers crossed.
Good luck,
Carryon
Posted by Ms. Myoclonus (Member # 6750) on :
Hello DEEJ, Myoclonus is my number one Lyme symptom, and although I have never been on Rocephin, my myoclonus always increases when I am herxing.
Do a search for "myoclonus" on lymnet , and you will find lots of discussions about this topic.
Terter is another longterm lymemnet member with severe myoclonus and her posts are very helpful.
Also, check out the website www.wemove.org. It has a link to myoclonus and discusses treatment options. My myoclonus is controlled by the seizure med zonegran. If it becomes too active, please look into some medications for some relief.
If the jerking is mild, I have found self-massage and lavendar oil to be somewhat helpful in easing the jitteryness that accompanies it.
Be on the look out for things that trigger the myoclonus. It took me a while to put the pieces together, but here are my triggers:
certain noises, especially surprising or metaillic noises
falling asleep or starting to relax
light touch
looking out of the corner of my eye (this is the weirdest one and the hardest one to deal with)
If you find your triggers, then you can learn to adjust to them.
Many people with Lyme-iniated myoclonus eventually have it go away with treatment. Mine has improved considerably with treatment, and I hold out hope for a cure.
Hope this info. helps.
Take care, Ms. Myo
[This message has been edited by Ms. Myoclonus (edited 07 June 2005).]
