Just wondering how many of you out there get muscle or body jerks from the lyme?????
Mine have decreased by 80% but I still have occasional body jerks and shoulder shrugs after almost two years of treatment.
I'm 9 months treating with Rocephin IV and saw most of it clear up but not all. Prior to the Rocephin IV I did one full year of oral antibiotics and bicillin shots.
Do you think it's something where we'll never rid ourselves of it completely??
I think the lyme is so imbedded in our tissue it's impossible to kill it all off.
Your thoughts or maybe input on antibiotics which helped??
Barb
Posted by Lymen (Member # 6882) on :
I had some of them.
They have gone after I treated Bartonella and Babesia. Hard to tell which treatment helped me more because I changed them somehow too often.
Anyway they are gone in my case and I have never taken Rocephin iv. If Rocephin helped you partially,as you say, perhaps Bartonella is the culprit because Rocephin does nothing for Babesia.
Posted by CD57 (Member # 11749) on :
I've been told that this symptom is associated with bartonella, not Lyme.
Have you been treated for it?
Posted by Aniek (Member # 5374) on :
Yes.
Vitamin B-12 and folic acid really helps. They are almost non-existent since starting taking them sublingually, and when they do come back I usually realize I haven't taken B-12 for a few days.
My blood levels of B-12 are also way up since taking it sublingually.
I take Perque Activate B-12 Guard, you can buy it at www.wellnessworks.net. I put a drop of Folirinse, which is a liquid form of folic acid, on each B-12 tablet. I buy that at my doctor, but I think you can find it if you google it.
My doctor had me start at taking 3 doses 4-5 times a day. Now I aim for 3 doses 2-3 times a day. If I'm really tired, low energy, or start jerking I take some.
A dose is one tablet with one drop of folirinse.
Stress is also a major trigger. When my jerking was really bad, it was during a very stressful time at work and when studying for finals. There were times when my entire body was jerking, I would completely flip over in bed.
I cut my hours back for the summer at work, and only worked 3 days a week. I used sick time and was able to cut into our sick leave bank for it. Since then I've taught myself to not let work stress me in the same way. It's not always easy, but it's important to try.
Posted by hiker53 (Member # 6046) on :
I have "the jerks" or myoclonus as my neurologist calls it. I have not been treated for bart, so maybe I should be. I did read that celiac can cause this symptoms and a woman who went on a gluten free diet for 14 months got rid of the myoclonus she had had for many years. I do not know if she had tick borne diseases or not. Hiker53
Posted by swedish lyme sufferer (Member # 14579) on :
I agree with above; the jerks are mostly from bart not lyme. I even think all twitching is from bart. I am doing rifampin and the jerking and twitching goes mad for some hours after dosing, then settles.
BTW, does rocephin do anything for bart?
You should try bart medication!
Hope for the best!
Posted by daise (Member # 13622) on :
Yes, I have some body jerks at night in bed. Not real bad. I haven't had these since shortly after I began Lyme treatment, when I was in Lyme herx.
We're going after the bart now--is it bart? Or is it the prolonged bart herx I'm in now?
I start babs treatment next month.
daise Posted by joysie (Member # 11063) on :
I have shoulder shrugs, head snaps, and wrist and ankle jerks at night falling asleep. They reduced significantly with bart treatment. I am down to one or two per week now. Kris
Posted by swedish lyme sufferer (Member # 14579) on :
Hi there jerking people, are you having smaller muscle twitching going on as well? or only the myoclonus stuff?
I have both, but it is getting better with the bart treatment.
Posted by BJK (Member # 13251) on :
Hi, I had full blown, entire body chorea before diagnosis a year ago (first called myoclonus), twitching, spasms, jerking, etc.
I have Lyme and babs (not sure about bart yet)
I, like you, improved to a cetain point and then a smaller amount of these symptoms remained.
Just recently was I diagnosed with possible babs and started malerone, the twitches have slowly gotten better with the babs treatment in the past 5 weeks.
To my knowlege Lyme, babesia, and bartonella can all cause this symptom.
I understand your concerns about permanant damage, Ive had them too, and am happy to be getting even better adding the malerone for babs.
BJK
not medical advice- just my experiences and opinions
Posted by METALLlC BLUE (Member # 6628) on :
quote: Do you think it's something where we'll never rid ourselves of it completely??
Based on my observations of what I've seen take place in this world, I can say with absolute certainty that a solution exists.
quote: I think the lyme is so imbedded in our tissue it's impossible to kill it all off.
That may be true for some people with the use of antibiotics, but fortunately we have more than antibiotics as an option
quote: Your thoughts or maybe input on antibiotics which helped??
What I've observed works best in order of most effective combination -- this is why the process is cycled again after one year.
Lyme: IV Vanco 1g to 1.5g per day 6 weeks minimum, with Oral Ceftin or Penicillin (Optional) - Most risk, IV line sepsis possible, allergy, liver and kidney (primarily kidney) at risk, blood testing needed weekly.
Rest for 2 months or until relapse begins
Oral Tetracycline 1,500mg 4-8 weeks. At 4th or 8th week do between 1 and 1.5g of Flagyl for 1-2 weeks depending on Herxheimer reaction. Tetra is less risky with mild to moderate side effects on average, Flagyl some side effects on average.
Rest for 2 months or until relapse begins
200mg x2 Plaquenil, & 1,000mg Biaxen 4-8 weeks At 4th or 8th week do between 1 and 1.5g of Flagyl for 1-2 weeks depending on Herxheimer reaction.
Rest 2 months or until relapse begins
Samentto Nutramedix 5-15 drops (ramped up) combined with whichever antibiotic worked most effectively earlier in treatment. 4-8 weeks At 4th or 8th week do between 1 and 1.5g of Flagyl for 1-2 weeks depending on Herxheimer reaction.
Repeat process.
Detox:
Glutathione Nebulized 2ml in saline solution. Key Pharmacy. Every 12 hours throughout entire antibiotic treatment.
Herbs:
Nutramedix, can't lose.
Those are just my observations, and opinions, not medical advice, and not suggestions.
For those who really want to get experimental, Rife is about as big as you can get with the least complexity in terms of understanding the learning curve and creating a routine. Most patients who stay the course of 2-3 years report significant improvements. Cost of treatment is appreciated, one time investment.
For those seeking something with more scientific validity, yet still experimental, the Marshall Protocol is near the top. Relatively complex, requiring planning, testing, a medical doctors care for the prescriptions, and 2 - 3 years. Patient reports are "moderately" positive thus far, with those who stick to the rigid system best seeming to benefit the best.
Hope this gives you some ideas.
Posted by dmc (Member # 5102) on :
Mine stopped when treated for Bart w/ Rifampin.
Posted by sfcharm (Member # 9392) on :
Thanks to all for checking in with regard to our muscle jerks/MYOCLONUS.
I will be starting Rifampin in about a month or two and hope that will help in eliminating all of my left over body jerks.
Barb
Posted by chamade (Member # 11472) on :
I have jerks at night, as I am falling asleep my arm, leg or whole body jerks and I wake up. Doesn't happen every night. Never happens during the day...I have small twitches all over instead.
Posted by CraigC (Member # 13732) on :
I definitely have both the twitches, and occasional myoclonic jerk. Last night, I even had jaw myoclonus, which hasn't normally been the case. The myoclonus doesn't seem to occur during the day, but as with the other poster, my muscles constantly twitch throughout the day and night.
I think when I see my new LLMD next month, I'll see what we need to do about treating co-infections as well. Up to this point, my current caregiver wanted to try me on the first course of abx, just to see if we were headed down the proper path. No change in symptoms, but I still believe there is something "Lymie" behind my symptoms.
Posted by sfcharm (Member # 9392) on :
I've got one muscle jerk in my upper back that seems to be more exaggerated since I started Ketek.
Does anyone else have a jerk in one spot that is there and jerks you day or night???
Barb
Posted by Beverly (Member # 1271) on :
Yep, I jerk too. I have had jerking on and off throughout my treatment for Lyme. I get whole body jerks and then minor jerks, but it's mostly at night for me for some unknown reason.
Posted by SmurfyMom (Member # 13688) on :
I get both bigger muscle jerks and smaller muscle twitching.
The twitching used to be primarily my fingers or eyelids. Lately I've had twitching on my upper lip, thigh right above the knee, and even upper arm.
The muscle jerks are kinda all over. Could be arms, legs, back, ankles, fingers, etc.
Posted by psano2 (Member # 11711) on :
I used to get them, but they've pretty much gone away after extended antibiotic therapy.
Posted by CD57 (Member # 11749) on :
I get twitching and occasionally, jerks. The jerks seem to happen right as I'm falling asleep. Sounds like these are pretty comon. Definitely bart, from what I've heard and read.
Posted by lymeladyinNY (Member # 10235) on :
I've been on Lymenet recently telling how I had full-body spasms (myoclonus) and with levaquin treatment have stopped suffering from them.
However, last night my son was crying and pulling on me and something about it caused my whole body to jerk violently.
The pain was so bad I screamed. Today so far, so good - but I am NOT at all happy that a symptom I thought was gone for good returned suddenly and without warning.
- Lymelady
Posted by Just Julie (Member # 1119) on :
Hey Barb, I've always classified my muscle issues as "twitching". I have had all over muscle twitching, beginning in May 2000, to the present day.
I saw the local LLMD (in S.F.) for 4 years, on abx for 4 years, straight, no breaks. At times, I would ask about the muscle twitching, how it related to whatever abx combo I was taking at the time, and if they were ever to go away. I got a lot of "unanswers" from the LLMD...
After stopping all abx in 2004, I waited to see what would become of my muscle twitching issue. After months, maybe 6 months? they went away completely for 2 whole months!
I was shocked. I anticipated having them indefinitely, since I saw no real relief from them the 4 yrs I took abx. Then, slowly, they came back. I noticed that they seemed to be intermitent type twitches, and some days, I would have none at all. I also noticed that whenever I had stress, real hardcore, pyschological stressors, they would immediately come on, and stay with me for days, maybe weeks straight at a time.
I filed all this noticing of my twitching in the back of my mind, I did not dwell on it, I did not focus on it. I tried to keep my mental state at an even keel, and tone down my personality from high maintenance, to just letting things go by, without getting all worked up over stuff that used to set me off. I'm a type A personality, a perfectionist to boot.
I have a younger son that pushes my buttons, and has since he was born. He's probably just a carbon copy of me!
In any case, my son is the hardest row I have to hoe, and I do notice that when he presents me with issues and behaviors that cause me to stress out, I do have a return of noticable twitching. I say this is a cause and effect type issue.
One other thing I noticed, was at a U2 concert about a year ago, I had my left forearm muscle, the one on top of your arm, begin to violently twitch during the last 3 songs of the encore. We had fantastically close seats to the stage, and of course, the music was VERY LOUD. I have been going to concerts all along, so this was not unexpected. But the forearm beginning to twitch hard, and continously in the same muscle, at the end of the concert, was new for me. I thought perhaps it was the bass noise that started it, since that was predominantly the sound that I noticed I did not care for during the concert.
So, maybe stress is the one thing I can tie to my twitching? Adrenaline? I wish I knew. I took mag supplements (everything but IM or IV) and noticed increasing twitching on some of them, so stopped completely. hope this helps! Julie
Posted by CD57 (Member # 11749) on :
Wow, Julie, that's totally interesting! I wonder if you're right about stress/adrenaline. I bet there's a connection, it just sort of makes sense that your nerves would be on hyper-fire when you're stressed out, you know? I have been really stressed out lately about my illness, and bingo! lots of twitches.
Posted by Just Julie (Member # 1119) on :
Yep, CD57. I used to expect the twitching to subside, or even go away, with each abx combo that my LLMD tried with me. I really did think it was a lyme symptom, something that manifested itself due to the bacterial load. My tick bite was 13 years prior to my muscle twitching. At the time of the bite, I had knee pain, which led me to a rheumatologist, and at that time, 1987, I requested a lyme test. I knew to ask for this because at the trailhead of every regional/open space park that I went to, there were signs posted that the area you are about to hike in, was known to have ticks, and "ticks can transmit lyme disease". I kid you not, this was 1987. I used to hike in these open space parks with my dogs 3-4 times per weeks, for YEARS.
So, had a negative lyme test way back then, but at least I knew to ask for one.
I can't piece together a true, logical sequence or chain of events that would lead to continuous, chronic muscle twitching, even with my medical background. Magnesium never helped the twitching. Taking boatloads of abx, continuous, for 4 years straight never alleviated them.
The only continuous chain of events I can tag onto them is the adrenaline/stress factor. I wish more people could track this, and maybe we could see a clearer picture! Julie
Posted by roro (Member # 13383) on :
i have had the jerking of limbs or one whole side of the body, tremors, fasciculations, and cramping so bad it looked like dystonia in my hand.
these symptoms have gone away with antibiotics for the most part.
Posted by sfcharm (Member # 9392) on :
Thanks all for your replies. Every reply is greatly appreciated.
Is there any one drug that you could say helped the myoclonus?
From what I read, hear and have been told it's bartonella.
So according to Dr. Burrascano's guidelines 2005, Levaquin is the first choice and Rifampin would be the second!!
If any of you have done either or found something else that worked would you reply back.
My Lyme nurse is telling me Rifampin/Doxy combo for three months.
Thanks again,
Barb
Posted by maureen2174 (Member # 11471) on :
i have been getting muscle twitching lately. I never really had this before and I just started bactrim a week ago, so maybe it is from bart. My tingling/vibrations have become worse since adding bactrim too.
Posted by Aniek (Member # 5374) on :
Stress is definitely a trigger. I had to reduce my work hours a couple summers ago because I was having really bad myoclonus (the neurologist actually said it was motor tics).
Barb, nothing helps me as much as sublingual B-12 with folic acid.
Posted by sfcharm (Member # 9392) on :
Hi all,
Wondering if all of you myoclonus victims could share any success stories as to how you tackled them.
I have to agree with Julie that stress seems to aggravate mine. I also think the fact that my bedroom is so cold at night that could be contributing.
After two years of treating with antibiotics including one year on Rocephin IV, I still get the myoclonus occasionaly.
I've had the limb jerking, shoulder shrugging (alot) and stomach myoclonus.
I still have not treated the bartonella which I always tested negative for. However as we all know that testing is poor as well so my Lyme Nurse treats for it if neuro symptoms persist.
I have the rifampin/doxy ready to go but am now taking a break from all antibiotics till I get a GI thing figured out.
Would those of you that have had relief from the myoclonus please share what antibiotic gave you the relief? I know it's usually a combo of antibiotics but anything you can sure would be appreciated.
I'd really appreciate it.
Barb
Posted by MBB3 (Member # 13459) on :
Yes, I have this...NEVER during the day, only when 'relaxed' as in lying in bed trying to fall asleep.
I will usually only 'jerk' from the knee down or perhaps just a hand. Happens in a split second and then stops.
This sx has seemed WORSE since taking IV Rocephin and several oral abx, but don't know if there's a connection?
Some say this a Bart sx and I have this dx but NO treatment yet...probably my next direction.
Take Care, MBB3
Posted by cjnelson (Member # 12928) on :
YES
Posted by Nessa1815 (Member # 15697) on :
fixing to start iv rochephin and oral flagyl in a few weeks.
I had these jerks BAD at night while falling asleep and some twitches throughout the day, mostly while I wasn't doing anything.
I hated it so bad. I've been off Doxy for about a week now, haven't had any since. Could it had been a herx or something? Probably not, who knows?
Posted by sfcharm (Member # 9392) on :
up
Posted by Just Julie (Member # 1119) on :
Hey Barb, It's funny, I always, to this day, click on the muscle twitching posts!
I reread what I posted originally to this thread, and my thoughts haven't changed.
One thing I did notice, is that I have never taken Rifampin. Never. Probably one of the few abx's I have never tried!
So, if I do/did have bart as a co-infection, but never got it adequately addressed due to whatever abx (combo) I was taking in all those years, then I can't make the assumption that the twitching is due to a bart issue.
Maybe you could throw out a post to this? Like, anyone who has/had muscle twitching, take Rifampin for bart, and had their twitching GO AWAY???
I'd really love to find out what is the root cause of this. Both my sons, ages 15 & 18, treated for lyme for about 3 years straight (at age's 7 & 10) did not initially say they had muscle twitching (and yes, I asked in the beginning, since I started off with the twitching) but have recently (can't remember when, sorry!) both said that they have muscles that twitch. Not non-stop, but they do occasionally come to me and say "mom, my muscles were twitching today".
My heart sank when I first got this report. It really made me wonder if there is something not being focused on here.
But, I feel like we're wandering around with blinders on half the time when we are seeking treatment. Yes, I did have that most famous of West Coast LLMD's treating us all, too.
So---??? Julie
Posted by ByronSBell 2007 (Member # 11496) on :
Why have you done IV Rocephrin for 9 months straight? Switch it up a little Posted by ldsucs (Member # 16142) on :
I "twitched" so bad 911 was called. I couldn't move or talk and was completely numb at one point.
Yes. I twitch all the time. As long as I can still function I'm okay with it!
Posted by James Marschner (Member # 13073) on :
I twich, but much more mild than you describe.
I seem to get it in my arms and legs. SOmetimes it's hard to tell cuz it feels like my whole body.
I'll have both arms jerk together as if I'm going to clap my hands, but I dont get that far.
My legs get involved too sometimes.
It happens more when my anxiety is strong.
I take Valium, so maybe that's keeping the twiches mild?
Posted by James Marschner (Member # 13073) on :
Taking anything like haldol?
Strong electrolyte imbalance (K+,Na+,Ca2+,Cl-, etc...)could cause it?-Vomit alot?
Some drugs cause hypokalemia as a rare side effect.
Posted by sfcharm (Member # 9392) on :
My first year of antibiotics was all orals and bicillin shots.
I then followed that with Rocephin IV for a total of 11 full months.
I've done Doxy (one month), mepron and Azithromyacin for six full months. Bicillin shots at 4.8million units a week for six full months.
Amoxicillin 6000mg a day with bactrim for two full months.
While on Rocephin IV I did tindamax with it for four months and flagyl and Ketek for four months.
I'd have to say I sure did mix it up quite a bit. Most of my drugs were done for at least four months at a time.
As I said I'm 90% back to where I'd like to be. The myoclonus is something I can live with since it only happens at night in bed as I'm dozing off.
I just thought maybe someone on this board had succesfully treated it and could share the antibiotics that they feel did it for them.
Will probably try the Rifampin/Doxy combo for four full months once the GI Stuff settles down.
Barb
Posted by BugBit (Member # 7829) on :
I twitch when Bb is active at night. Feels like a bee sting, then my arm or leg flies up and smacks the wall.
LLNP thought it was Babs, tested negative but did 4 months of Mepron.
Around the same time I got rid of a bunch of viruses and started Valium at night or when the anxiety would start up - stress is a trigger for me.
My neuro-Lyme somehow is connected to an anxiety disorder one Dr. interpreted from a spect scan.
For me, Valium is a life-saver and I didn't think of it till now, but the twitches have gone, for the most part. I get a bee sting once in a while but haven't for a long time. Curiouser and curiouser, *BugBit*
Posted by sfcharm (Member # 9392) on :
Up for more comments
Posted by jt345 (Member # 19638) on :
I Had twitches for years,after IV treatments they went away. But as of late they have started to reappear. Hopefully,the doxy will knock them out.
appleseed
Posted by TadichGrill (Member # 19679) on :
sfcharm are you doing any herbal follow up or getting magnesium IVs or shots?
Posted by Robin123 (Member # 9197) on :
Different angle - I have never had any muscle twitching, and I have only Lyme, not co's. I'm saying this in case the twitching is caused by a coinfection and not Lyme.
Posted by Minnie Mouse (Member # 13642) on :
I too twitch a lot. It actually went to a full body jerking that nearly had me in the floor unconcious.
Been having seizures. I don't like it one bit.
I ran across the street to kroger quickly thinking i'd be ok, and an ambulance ended up carrying me away because of one of these incidents..
Now I'm nervous to go anywhere. Especially places where people know me. for so long i was able to hide just how sick i was by staying home until i had a window of being able to drive/walk/talk normally.
Now i'm in a wheelchair most of the time at stores praying I don't embarass myself.
I was yelling and jerking uncontrollably.
Crying too, because i didn't want to go to the hospital.
It's really hard to have something take control of your own body and voice away from you.
If you respond to my msg in particular, plz send me a private message. I forget i post things, and i don't know how to find things i post.
I put my name in the search thing and it doesnt come back with all my entries?
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