posted
Maybe look up cervical dystonia and you'll find a lot more information. Bartonella appears to have triggered it, for me. Feel free to PM me if you'd like but yes I have this symptom, it has progressed over the years and gets worse when i'm herxing; definitely related to the infections
Posts: 161 | From Southern United States | Registered: Sep 2009
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posted
I get that, but not head...arms or toes. My big toe with start jerking or contracting. It does not happen all the time, usually once a month when my symptoms flare. The severity is much better now that I am on treatment
Posts: 747 | From Utah | Registered: Apr 2010
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posted
It's probably important to determine whether this is more like a tic/twitch or is this more like the jumps you get as you're falling asleep?
I get the falling asleep type movements a lot, even when I'm not falling asleep. All of a sudden my leg, arm, neck jump, sometimes repeatedly (not like a muscle twitch, but the entire body part moves). I distinguish it from a tic because I can stop it if I want to (except those that happen as I'm falling asleep, b/c I'm falling asleep ).
My LLMD has no answer to this. Seeing my neuro next month, but for back pain, not this. But, I'll mention it.
I've actually come to appreciate these little jumps because I feel better after they occur and because I have some level of control over them. I actually allow/encourage them to happen (in private, that would be quite a spectacle in public). It really is a big release.
They happen a lot, for me, when I get cranial sacral therapy (a light touch healing modality). My therapist explains it as the body releasing pent up energy and underlying emotions and stress causing the pent up energy.
I'm pretty comfortable with it all. For me, I'll go through periods without any jumping and then a lot of it. Now that I'm in treatment, I see I get much more when I'm herxing.
But, as with all my symptoms, I mention it to my docs to double-check.
Posts: 252 | From New York | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Myoclonus has a full range. It's not just minor twitches.
Yes, very common to lyme. No, a neurologist will probably not be of much help with this.
What is your magnesium type and how much are you taking? Magnesium Citrate or Gycinate or Taurinate are very good. Take to bowel tolerance and back down from that.
I need 1,000 - 2,000 mg a day
Are you avoiding - totally - aspartame and MSG? Google for all the names they each hide under.
Also be sure to avoid caffeine. Rest when you need to as myoclonus can be a sign your body is overstimulated. Adrenal support can help, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
greengrl this is what Im experiencing over the last 3 weeks and I thought I was going nuts!
Its normally my right shoulder/shoulderblade and my L or R thigh/buttock... I also have the tremors and this jerking movement seems to help, like a relief.
I have just recently started taking Magnesium and upped my B12, so far the random twitches are gone, the jerking has lessoned as well as the tremors.
Im not undergoing any treatment and still trying to find a doc to do blood tests
Posts: 83 | From NC | Registered: Jun 2010
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posted
I have myoclonus, twitching, whatever the docs want to call it; sometimes spasms, etc.
It bothers me alot and is my most disturbing symptom. I believe it is caused by Lyme, so just keep treating.
I find that most doctors have no idea what the mechanism behind this is.
Supplements like magnesium and vitamin B, help. I have now (after months of resisting....but you convinced me keebler!) cut gluten out of my diet.
Beyond that, I want to be happy and function and not worry all day about the uncomfortable symptoms. I see a movement disorder neurologist.
Now: if you see one, and I suggest you do, remember they will probably be totally clueless about lyme. Take your test results, let them know what you have, but don't expect support or belief.
It doesn't matter. What matters is that you get some symptomatic relief so that you can be comfortable as you treat. My neurologist I think finally believes we are dealing with lyme...no matter...it doesn't change the treatment one bit. I am controlling my spasms/twitches, etc. with low doses of klonopin (only when needed...today I didn't need any ) and botox injections in the most affected areas. This is an approved treatment for cervical dystonia, if that is what you have. I am fortunate that my insurance covers it. I had injections 2 weeks ago around my lower jaw and neck and I am feeling much better now...and I can concentrate on my life.
Basically my strategy is to have my "team" of doctors and alternative healers. The core of course is the treatment from my LLMD, other doctors help with symptoms that can be to overwhelming for an LLMD (they are truly overwhelmed in many cases).
Seek additional help from other doctors regarding your symptoms. Make sure your LLMD knows what therapies/medications you may be prescribed. Ask lots of questions. Keep trying to feel better, don't stop trying. Once you get relief, it is easier to get into a positive state of mind and that is very important for healing, it can be a long haul!
good luck, you can pm me if you like.
Posts: 172 | From ohio | Registered: Feb 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I had them and a lot more. They have gone with lots of treatment. It is one of the most scary symptoms of herxing.
These guys are right--it is rare you will get anyone but a LLMD who has treated you for months to understand it.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Im experiencing the constant jerking movements but its almost like I HAVE to do it. The inside of my leg/arm/back will feeling extremely weird, almost like a tickle and I feel relief when I move. Could this be RLS?? I have it as soon as I wake up through out the whole day...
Im taking 500mg Ultra Mag and b12, the mag took care of the extreme muscle twitches but is not doing a thing for the movements.
Im not on any antibiotics so this is not a herxing sx.
I did see an ID MD Friday and he told me it was anxiety...although I havent had a panic attack in months...
Posts: 83 | From NC | Registered: Jun 2010
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posted
I have had the full range of involuntary muscle movements. When I was at my sickest, I would have literally thousands of twitches a day. They ranged from very light to extremely strong (enough to see across the room), and from a single flutter to several minutes of twitching.
I also would have several dozen muscle jerks each day, where a part of my body (or at least a muscle in it, like if it was my back or shoulder) would jerk once very violently. Strong enough to make my hand, foot, leg, hip, head, etc move several inches.
I still have problems with my muscles, but after 2yr of treatment I am down to a handful of mild jerks a day at most, and only a handful of twitches a week.
I don't know how to rate my improvememt accurately, but something like 98% gone sounds reasonable.
Posts: 155 | From Texas | Registered: Oct 2007
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posted
Well, I have it and know two other people (Lymies) who have it, if that counts for anything. On the left side for all three of us. My LLMD also finds it common for us.
It's worse on my bad herxing days and ironically when my oxygen is low/ not getting enough blood to my brain. But I've gone through long periods while on abx where it happens all throughout day regardless, and it's almost always worse in evenings/night.
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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posted
Yes, I definitely have this, jeffinca. When I have them, I look a lot like I have parkinson's, and have had people say that to me (I'm 30 years old, btw). I really understand how difficult this is -- for me it interferes with walking, writing, talking, etc., as my coordination is thrown off.
You mentioned Stevie Wonder -- yes, this swaying motion is often there, and when my tremors are most strong I look more like recent videos of Michael J. Fox. (Just trying to give visuals, as this helps me know what people are talking about.)
You asked about frequency. I go through weeks where I'll have them everyday, all day. Then I'll have times where I just have them a portion of the day, or just a few days a week. It depends what is happening in my treatment.
Recently I began having more severe seizures, and interestingly enough I noticed that when those happened I didn't have the tremors for awhile. Today the tremors are back though, after a couple days without seizures.
I am going to see a neurologist this week for the first time about all this. I'll be interested to see what they say. I strongly feel that this is due to the lyme, as my seizures and tremors all increase in a herx after I treat (I use rife). However, I just want to make sure I'm not missing something, and hear what they say. I don't plan to mention lyme to them.
Good luck -- I know this can be difficult. Peace to you, and your nerves.
Posts: 232 | From Oregon | Registered: May 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
My son is 11. He has had this symptom since he started antibiotics. First antibiotic was amoxy, then doxy, sorry I don't remember the combos... now rocephin.
Oddly enough he did not have this symptom before abx. I do believe now that we have some proper mag. supplements - he is better with this symptom.
Some of his earlier jerks would throw him off a dining room chair to the floor or drop him to the floor if he was standing... so no not controllable at the worst. Some facial tics... he wouldn't know were happening... and some shoulder or left arm/leg movements.
Can anyone explain why the left side is worse? I heard others mention this too... and it is something I have noted in my DS.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Oh yeah I've started to get those involuntary movements too last week, it's really scary, it feels like the muscles are all so tight that the jerking is the only way the body has found to try to relieve the tension... I wonder if it is specific to lyme too... Has anyone got rid of this with lyme treatment? or as it more from bartonella?...
Posts: 723 | From Montreal | Registered: Oct 2010
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Are you guys sure you don't have a subclinical calcium deficiency (hypocalcemia):
*Clinical symptoms7 ◦Neuromuscular8 ■Numbness and tingling sensations in the perioral area or in the fingers and toes
■Muscle cramps, particularly in the back and lower extremities; may progress to carpopedal spasm (ie, tetany)
■Wheezing; may develop from bronchospasm
■Dysphagia
■Voice changes (due to laryngospasm)
◦Neurologic9 ■Irritability, impaired intellectual capacity, depression, and personality changes
■Fatigue
■Seizures (eg, grand mal, petit mal, focal)
■Other uncontrolled movements ◦Cardiac ■Shortness of breath ■Symptoms of congestive heart failure (possible) ◦Skin ■Coarse hair ■Brittle nails ■Psoriasis ■Dry skin
Physical Physical examination findings may include the following:
*General: Patients may appear confused or disoriented. They may exhibit signs of dementia or overt psychosis.
*Head: Hair may appear coarse. Alopecia may be present.
*Eyes: Subcapsular cataracts or papilledema can be seen.
*Oral: If chronic (since childhood), patients may be at an increased risk of dental caries and enamel hypoplasia.
*Respiratory: Inspiratory or expiratory wheezes may be present.
*Cardiac: Signs of heart failure may be present (see Other Tests).
*Skin: Dry skin or patches of psoriasis and eczema may be present, particularly in patients with chronic hypocalcemia. *Neurologic ◦Chvostek sign: Tapping the skin over the facial nerve immediately in front of the external auditory meatus will cause an ipsilateral contraction of the facial muscles. Up to 10% of the population will have a positive Chvostek sign. This test, while suggestive, is not diagnostic of hypocalcemia.
◦Trousseau sign: Place a blood pressure cuff on the patient's arm and inflate to 20 mm Hg above systolic blood pressure for 3-5 minutes. This increases the irritability of the nerves, and a flexion of the wrist and metacarpal phalangeal joints can be observed with extension of the interphalangeal joints and adduction of the thumb (carpal spasm). Trousseau sign is more specific than Chvostek sign, but the test result can be negative. *Movement abnormalities include the following: ◦Choreoathetosis10 ◦Dystonic spasm ◦Parkinsonism ◦Hemiballism
Posts: 1155 | From Southeast | Registered: Oct 2005
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
How would we know if it is a subclinical calcium deficiency (hypocalcemia)? He is taking a calcium supplement... would this rule this out.
Geez... if I could give him calcium and make him not irritable... that would be awesome.
I think the irritability comes from constant pain... that I am still trying to find relief for!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Hum, I believe any deficiency is triggered by an underlying cause... So what is it? the same list of hypo calcemia can be attributed to lyme...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
By the way, I read somewhere that lyme could use calcium to form biofilms... thus the hypocalemia?... just a thought...
Posts: 723 | From Montreal | Registered: Oct 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by Shahbah: By the way, I read somewhere that lyme could use calcium to form biofilms... thus the hypocalemia?... just a thought...
Meaning I really shouldn't be supplementing with calcium?
What about bone health from no dairy?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
You need adequate calcium levels for every cell in your body ESPECIALLY YOUR HEART to function properly.
When you get a regular CBC they test your calcium levels. Mine has been low in the past several times, as well as my potassium. You use more of both these ions, to power the immmune cells fighting infections. My low levels did contribute to more twitching and muscle fascilations. However, I don't think that's what this thread is about...
The kind of flailing and jerking that I think jeff is talking about, never happened in relation to my low calcium levels. My problem became severe immediately after I contracted mycoplasma pneumoniae--I never got pneumonia but it obviously invaded my nervous system.
little olive
-------------------- Myalgic encephalomyelitis, 2002 | Viral onset, following Hep B vaccine Lyme since '06 | Bartonella since '08 (cured) | Mycoplasma pneumoniae since '08 IGeneX: IgM 31IND 34IND 41+ | IgG 39IND 58+ 41+++ IgG deficiencies and MTHFR 677TT mutations Posts: 512 | From USA | Registered: Sep 2010
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My most severe symptoms were myoclonus and feeling like I was being poisoned (which I was).
My myoclonus involved my head moving, shoulder shrugging and arms flapping by my side. All of this only happened at night as I lay down to go go sleep.
I did get some severe myoclonus stomach jerks. It felt like someone was reaching in for my stomach and trying to pull me. As fast as it hit, it was gone. These happened during the day quite frequently.
I am now experiencing them again after two years of no symptoms.
I also had my head jerk back in my bed the other night, no control over it.
I'd be interested in hearing how many people here who have myoclonus have been on anti-depressants. The only reason I ask is I've talked to a few people over th years who experience myoclonus and have no lyme going on.
Posts: 281 | From san francisco | Registered: Jun 2006
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posted
Totally relate to the stomach jerking. It feels like someone is punching you in the gut at lighting speed.
Head snapping back is also one we are dealing with.
Did it go away with treatment and now it's returned?
Do you think it's from lyme or a co-infection?
Myoclonus is a symptom and not a condition onto itself. Falling asleep and having jerks is a very common issue. Sometimes violently.
Posts: 165 | From lymeland | Registered: Apr 2010
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posted
I'm thinking it was bartonella which I never properly treated. I'm back on a slew of antibiotics to try and tackle this. I'm hoping I don't have to go back on IV Rocephin.
It is the antibiotic that got me into full remission of symptoms for 2 1/2 years though so I know it works.
Posts: 281 | From san francisco | Registered: Jun 2006
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) and botox injections in the most affected areas. This is an approved treatment for cervical dystonia, if that is what you have. I am fortunate that my insurance covers it. I had injections 2 weeks ago around my lower jaw and neck and I am feeling much better now...and I can concentrate on my life.![[Frown]](frown.gif)
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