posted
My husband contracted Lyme in 1976. Now he is suffering with all sorts of neurological problems. Has anyone heard of Lyme causing fasiculations? He has all the other neurolyme symptoms and is currently being treated with Rocephin (I.V). He has only noticed a very slight improvement in his symptoms. Is there another course of treatment that works better for neurolyme? Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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jpoppeck
Unregistered
posted
yes my son in law has neurolyme and he also has the fasiculations... Sometimes they are very bad and other times he says they are just there. Son in law is in a wheel chair the lyme has caused his fine motor skills to go nuts....cannot use his hands - but through therapy is slowing gaining muscle strength but he has a long way to go.
posted
I have them, too. Funny how the neuros usually refer to them as benign fasciculations. I haven't had them today but this is the first time in months. I've had them off and on for 7 years.
How long has your husband been on the IV? For being sick that long it is probably going to take some time to see any improvement.
I must have contracted this some time over 7 years ago and I've only started treatment in July. I had my first good day in 2 months.
posted
Fasciculations are a major symptom of my neurolyme . They occur more frequently when I feel worse. I would say this one of my biggest symptoms; second only to psychiatric/cognitive symptoms. Just dx 2 months ago, have had symptoms off and on since 1987. Taking 3000 mg amoxicillin to start..no real change yet.
Posts: 17 | Registered: Dec 2003
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quote:Originally posted by gopats: I have them, too. Funny how the neuros usually refer to them as benign fasciculations. I haven't had them today but this is the first time in months. I've had them off and on for 7 years.
How long has your husband been on the IV? For being sick that long it is probably going to take some time to see any improvement.
I must have contracted this some time over 7 years ago and I've only started treatment in July. I had my first good day in 2 months.
Hang in there.
He's been on the IV about 3 weeks. No change yet but we've heard it can take awhile to see results. Do you have fasiculations all over your body as well where they are easy to see? My husband does.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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quote:Originally posted by CF: Fasciculations are a major symptom of my neurolyme . They occur more frequently when I feel worse. I would say this one of my biggest symptoms; second only to psychiatric/cognitive symptoms. Just dx 2 months ago, have had symptoms off and on since 1987. Taking 3000 mg amoxicillin to start..no real change yet.
My husband has the same problem. If he's more active and feels worse the fasiculations get worse and are all over the place. He has mental fog as well but also has fatigue which is very frustrating. His fatigue has gotten a little better since being on the IV antibiotic but that's about it. I appreciate the responses. The Dr.s here in Portland told us they'd never seen fasiculations with Lyme disease. But you don't see many people here in the NW with Lyme disease. He originally got it in Lyme Connecticut. He was one of the first cases and was treated with 14 aspirin a day. Never did get antibiotics until now.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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posted
I haven't been on in awhile so pardon this question... what are fasiculations? I have been dx with neuro lyme for over 4 yrs and have never heard this term.
posted
They only plan to have him on for 21 days which is up tomorrow. We're trying to get the okay for one more week as we have heard the spirochetes have a four week life cycle. Oregon has pretty strict laws on the Lyme protocol. We think we will be going out of state if we get no joy here. I've contacted a woman from a support group in the area and will attend their next meeting.
We feel for people going through this. It's very frustrating! It's good to know fasiculations are a common symptom. The three doctors we've seen here told us it had nothing to do with Lyme and is probably another muscle disease which made no sense to us as fasiculations are a neurological symptom. By the way, my name is Claire and my husband's name is Brian. Thanks for the support. I can't tell you how much better I feel to have others to talk to.
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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Welcome to Lymenet. I am sorry to hear about your husband. My son has neuro lyme too. He just started treatment for it, we are working on week two so far. I hope things get better for ya'll.
My son has the "jumpy skin" as we call it. Thanks for giving it a name.
lynnic86
The word fasiculations caught my attention too. I looked it up in my medical dictionary.
It means involuntary contraction or twitching of muscle fibers, visible under the skin. Spontaneous contractions of muscle fibers that do not cause movement at the joint.
I'm learing something new everyday. Lets add another symptom to Dominic's list. Poor love the more I learn the more symptoms he gets.
Thanks for answering my queastion! I also have that symptom but it is more of a tremor which I take seizure meds for to help not get them as often. I guess I could have looked up the word also... maybe a lyme fog kind of day.
posted
[QUOTE]Originally posted by Mathias: [B]Fasiculations are my most common symptom. I have had them almost 24hr/day for the past 6-7 months except for very rare, short periods of time.
I have been diaganosed with Lyme by an LLMD and a LL Neuro. The LL Neuro was looking for ALS but ruled it out after two EMG/NCV.
Oral abx have done very little so far to alievate that symptom for me. Dosage increases have definiely made it worse.
Possibly starting on IV Rocephin soon.
Would be very interested in how your husband does on the Rocephin.
From what I have heard/read sometimes these symptoms can take very long periods of time to clear.
Good luck.
He was very sick the first week he was on Rocephin. Although I hear that is good because it was "Herxing". He's now in his fourth week and is very ill again. He has no energy and feels like he has the flu. His fasciculations are still going. Sometimes they are less and sometimes more. They are very strange to watch. It's like a baby kicking all over his body. It's worst in his chest and arms. He hasn't noticed much change in his other symptoms like; fatigue, muscle aches and cramping as well as mental fog. His neurologist also thought it was ALS which freaked us out big time. What a scary disease. She diagnosed it within 10 minutes of examining him. He asked to be tested for Lyme and it came back positive and she said he should be treated but Lyme wasn't the cause of his symptoms. Very disheartening. Do you have fatigue along with your fasiculations?
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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posted
I developed fasciculations after one year treating my lyme. Dr.suspected babesia and put on Mepron. The fasiculations decreased 90%. Herxes are horrible!!
quote:Originally posted by bigbadbri: My husband contracted Lyme in 1976. Now he is suffering with all sorts of neurological problems. Has anyone heard of Lyme causing fasiculations? He has all the other neurolyme symptoms and is currently being treated with Rocephin (I.V). He has only noticed a very slight improvement in his symptoms. Is there another course of treatment that works better for neurolyme?
Posts: 1 | From The air | Registered: Mar 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Yes I have fatigue but it is quite variable. I also have muscle atrophy (wasting) and slight muscle weakness. Does you husband have those symptoms as well?
I have muscle aches (very deep and painful) not much in terms of cramps but my muscles do feel tight/stiff.
My twitches are mostly in my legs but I have had them everywhere (chest, back, arms, hands, feet and face).
Sounds like your husband was given the correct treatment early and hopefully he recovers quickly.
I was misdiagnosed for months and still haven't tested real strong for lyme so I haven't gotten the IV yet.
It's very frustrating, I've already had thousands of dollars of neurological tests, the cost of which could have covered months of IV therapy.
Keep me posted on how your husband is doing, I'll do the same.
quote:Originally posted by virginia anez: I developed fasciculations after one year treating my lyme. Dr.suspected babesia and put on Mepron. The fasiculations decreased 90%. Herxes are horrible!!
How do you get tested for babesia. He was tested positive for Lyme? Did you suffer Herxes with the Mepron? Will insurance usually cover the test for babesia or other co-infection?
Posts: 33 | From Portland Oregon USA | Registered: Feb 2004
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Maureen
Unregistered
posted
The only people I've ever met who had fasciculations (muscle twitches) were folks at the LLMD's office. They are very common and I believe part of the peripheral neuropathy of LD.
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posted
hello...i dont know if you still come to this site or not but what you describe here inthis note is exactly what my hubby is going through...did you start the iv's???please update me on how u r...thanks..Laurie in ohio
quote:Originally posted by Mathias: Fasiculations are my most common symptom. I have had them almost 24hr/day for the past 6-7 months except for very rare, short periods of time.
I have been diaganosed with Lyme by an LLMD and a LL Neuro. The LL Neuro was looking for ALS but ruled it out after two EMG/NCV.
Oral abx have done very little so far to alievate that symptom for me. Dosage increases have definiely made it worse.
Possibly starting on IV Rocephin soon.
Would be very interested in how your husband does on the Rocephin.
From what I have heard/read sometimes these symptoms can take very long periods of time to clear.
posted
My chiropractor told me to take magnesium (magnesium glycinate is what I take) and zinc. Within just a few days all of my muscle twitches(fasiculations) were gone!
If you get muscle cramps, take calcium, but not within several hours of the magnesium.
Do not confuse fasiculations with myoclonus or jerking of the limbs. That needs seizure meds.
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