SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Has anyone successfully gotten rid of twitching muscles? Any theories on the cause? I have read everything from Magnesium deficiency to the spirochetes themselves moving through the tissue to nerve damage from the infections. That said, it is one of the symptoms that seems to persist even as I seem to improve otherwise.
I'd be interested in hearing your twitching stories... and theories....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I do electrolytes, minerals, etc. consistently and nothing has really touched the twitching. Bicillin increased it significantly btw.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Several weeks ago, on the TV show...Extreme Makeover, Home Edition they featured the installation of a far infrared sauna in the new home being built for a family who have a son who suffers from cerebral palsy.
Cerebral palsy patients suffer from constant, I mean constant, muscle contractions.
This is an APPROVED treatment to help those persons to RELAX their muscles.
There is much to be gained by dilating the blood vessels AND thinning the blood.
We need to be able to REACH an infection, to send in the nutrients (including oxygen...and antibodies) in order to heal.
We must have "flexible" arteries...not those lined with oxidized LDL + calcium placques.
Olympic athletes and marathon runners used to bulk up on complex carbs to supply glycogen without triggering insulin. Now they have found much greater endurance when they drink...get this...chocolate milk...before competition.
Ca and Mg...;-) "Longer lasting" than good old glycogen to produce hydrogen.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Sorry Scott-wish I could say I found something that helps. Needless to say the twitches comes & go without rhyme or reason. Have had one in my abdominal area for a while now. Have had them just about everywhere.
Will be watching this post closely as I am also interested to hear of any help for this problem.
ps. have tried the mag & didn't do it for me. Have tried many different kinds as well.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Have you had your electrolyte levels checked?
Specifically...is K high or low?
Bicillin is often formulated with either K or Na.
Dana, once/twice a day Mg...alone...will not do the trick. Mg levels continue to drop as this disease progresses. In part, due to melatonin levels.
Twitches are more related to Na-K pumps/levels and muscle cramps to Ca-Mg pumps/levels, it appears.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
A gram (2 ml.) of Magnesium Sulfate IM once a week pretty much takes care of it for me. I've been making a lot of progress on my weight-lifting now that twitching and painful muscle spasms aren't impeding me.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
posted
I've had constant muscle twitching that keeps me from sleeping. The ONLY thing that's helped is magnetc field therapy. Now I don't get the twitching hardly and I sleep.
posted
My muscles twitch more when I'm under stress...i.e., when I get up tight under some social setting.
I also thought I read that muscle twitches are caused by toxins from the dieoff near the nerves. But I'm not too sure about that...I almost get the feeling that wrong signals are being sent out from the CNS.
I did see one episode of Mystery Diagnosis in which a person had a lot of muscle twitches and the cause was they found a large mass pressed against his spinal area around the abdominal section.
Best Wishes!
Posts: 187 | From Gaithersburg, Maryland | Registered: Feb 2006
| IP: Logged |
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
My twitches, which had been lessening with Lyme treatment, have worsened the last year along with the new symptoms of myoclonic jerking and tremors.
It seemed to have gotten worse as my Bartonella got worse. I've been on and off Bart treatment due to medication issues, but I'm back on.
The newest piece of the puzzle is that my myoclonus seems to be the worst when my cortisol is abnormally high. I did the Diagnos-Tech 24-hour cortisol saliva test. My cortisol is flipped (low in morning, sky high at midnight), in what one of my LLMDs said is a typical fibromyalgia pattern.
I'm wondering if there is a cortisol-twitching link. I've got to figure out how to address the cortisol, and maybe it will help the twitching/myoclonus.
Interesting about the Bicillin - I've been on it a long time.
Just throwing it out there to see, Scott, if you noticed any similar patterns.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
9 months of IV Rocephin!!!
Pre-IV every part of my body twitched and actually a left eye facial twitch was one of my last symptoms to go away!!! I had jerking twitches that made my whole body jolt and I had jolts which made me fall down when walking and I had rippling shoulder arm twitches and those awful little over and over and over twitches and those even awfuller little twitches... I also had chorea in my left hand which is a movement disorder kind of twitching but looks super weird, like you have no bones, all twisty, never seen anything like that in my life, was amazing...
anywayz, all gone thank goodness*! )!*!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Still twitching a year later..It's just weird to continuously twitch daily? Just wondering if they will ever "stop." I posted the same thing a while ago..didn't know if they were related to neuro lyme or not? I did mag drips for awhile and they didn't seem to help. I take magnesium vitamins every day too and still have it, although it is not always as severe as it has been in the past. Natalie
Posts: 87 | From Clarksburg, NJ, Monmouth | Registered: Aug 2005
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Years ago, somebody mentioned that calcium reduced his twitches.
I have no rhyme or reason to my twitches. My motor tics are pretty much gone. I think it's part Omnicef and part the supplements to treat my autonomic nervous system.
They definitely get worse with stress. I've gotten much better at stress control because of the motor tics. It's amazing how I just let things roll off of me these days.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
I've been thinking a lot about this too, as I have twitching that comes and goes (and a raging case of Bartonella). I suspect, as Jill mentioned, that cortisol might be an issue, although my suspicions come from finding out what makes the twitching *worse* instead of what makes it better (yeah, I'm backwards that way).
I noticed that caffeine completely makes me twitch, even if I haven't twitched in weeks. Turns me into Twitchy McTwitch-a-lot shortly after I drink it. Caffeine plus stress and lack of sleep, and I hit the twitching trifecta, which is always so fun when, for example, I'm in an elevator, and people try to scoot as far away from me as humanly possible while studiously avoiding eye contact.
I know that caffeine raises cortisol levels, yes? As does stress. And caffeine raises stress. It's the circle of life. And now I'm craving Starbucks . . .
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I also notice that I twitch much much more at night while in bed. I wonder if it is just that I notice it more with a calm mind, but it does seem to be more active at night. It seems to occur hundreds of times a day still.... Twitch twitch twitch...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
You are not alone. I've been twitching since 2003. I'm 90-95% better but I still have that as a symptom. First symptom in = last symptom out I been told.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I found adding a little bit of zinc with the magnesium before bed helps. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
| IP: Logged |
posted
Just came up on this post with regard to twitching. It was my second symptom and it lasted for one year non stop. I was at both ALS clinics in San Francisco since body wide fasciculations (twitching) is a sign of ALS.
I was told no I didn't have ALS, then went on to be diagnosed with lyme.
I found taking Peter Gilliam's Natural Calm (found in vitamin/supplement stores would help. I have it at night as a cup of tea.
After a year on it my twitching resolved. I also was on antibiotics during this time and can't say for sure that they might have helped as well.
I did bicillin shots 4.8 million units a week for six full months. I was also on Mepron/Azithromycin for five months. It was during this time that the twitching resolved.
Barb in San Francisco
Posts: 281 | From san francisco | Registered: Jun 2006
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I did IV Magnesium, no real help. ABX, especially Rifamp & Zith made the most difference in the twitch dept.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
posted
I have twitched like a spastic person at times. I audibly yelp when the shock is particularly painful. Very embarassing.
Twitching is mostly gone unless I eat simple carbs. Then the twitching occurs immediately. I think the high insulin release increases nerve inflammation. Barry Sears discusses high insulin increasing inflammation, as I recall, so I am extrapolating that to my problem with nerve inflammation.
In general, twitches are better I think due to high and frequent magnesium intake and very low simple carbs. The tough part of eating a low carb diet is that the increased protein makes me more acidic. I can get my urine pH up with Trisalts, but not the saliva pH. I welcome any feedback on that issue.
Scott, thank you for being a part of our family and a reliable clearinghouse for information. I tell all my docs to look up your site for good Lyme info.
Susan
Posts: 233 | From United States | Registered: Oct 2006
| IP: Logged |
posted
This is an old post, would be interesting to know if your twitching improved?
Myself, I have been in treatment for 5 months and my twitching is better. But I almost consider it a non symptom (compared to my nerve pain).
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
The twitching continues. I don't worry about it being a sign of ALS since I have had it for over ten years with a remission of 3-4 years in the middle. It gets worse when I herx but is always around. It will go - just hasn't yet... Be well
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
posted
The twitching seems to come around at two distinctly diff times for me - when relapsing, and while killing babs. Followed after treatment, by either a decrease or none at all for a time - then back to relapsing & it starts all over.
My last round of Malarone of 2 mo's did take care of that eye twitch CaliforniaLyme and luckily that 1 has not returned. It twitched all during the 2 mo's - but stopped about a week after TX was finished. However that constant eye twitch served me well in poker games cuz people would think my eye was twitching cuz I was nervous, or bluffing; little did they know!
Thought I had it beat when I upped the B-12 to 1000 to 1500mcg's instead of my usual 500mcg's and just had 2 maybe 3 weeks of no twitches. To test this, if I felt just 1 twitch I popped that 3rd 500mcg of B-12 & all gone, just like magic...Thought I had beat the twitches. But...
Am doing Buhner's only - adding slowly, and just added the Andrographis - and I'm only up to 2 per day; so have a ways to go to get to full dose. Twitches are back - along w/ that really achey leg feeling.
I will have to test out Kendrick's theory of dehydration - as I have noticed my urine to be more concentrated & darker yellow the last few days - kinda thought I was just passing alot of vit's & herbs, but tomorrow I will drink alot of water, and see if they decrease. If not, I think it maybe the babs is getting hit from the andrographis.
Re-read what Buhner says about the andrographis earlier & he say's it's shown to be an anti-malerial as well as anti-spiro.
Not sure if I can safely just keep adding more B-12 - I don't know what is an excessive dose, or if we just pass what we don't need. Anybody know?
That said, while writting this my calves were going a mile a min. I have already taken my 1500mcg's today. 1000 at my reg time this morn, & another 500 earlier this eve before going to a viewing where I knew I was going to have to stand awhile.
Anyway, 10 mins ago I took a forth 500mcg B-12 and they are gone now. HUMM... (BTW - I do take mag - but can't do alot of it. I can only take 100mg twice a day that's all my bowels can tolerate.)
BUT - took it w/ some cheese, so maybe Aniek's right & it's calcium. Double HUMMM...
I put alot of faith in what Marnie says and maybe my blood isn't thin enough since adding more herbs and that's why my legs are also achey. I can test that easily enough tomorrow morn when I shave my legs - I always nic my boney shins, so I'll see how freely I bleed.
So that's what I've noticed in 7 yrs of twitching! Good night all, now that my legs stopped, I think I'll try to get to sleep. ((((hug)))
Posts: 176 | From Tenn | Registered: Jul 2004
| IP: Logged |
posted
I had horrible twitching at the height of my lyme disease 2 yrs ago. Treatment made them go away but they do reappear when I a) am very dehydrated and b) eat sugar. The latter makes me think it is yeast related since I am still battling THAT problem. The twitching I do get is NOTHING like it used to be..just a few twitches here and there. Previously they were constant -like 90 twitches a minute.
Julie
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
| IP: Logged |
quote:Originally posted by jsnyde2: Oh - and Marnie - or anyone -what is K and Na? Thanks! Julie
K is potassium and Na is sodium.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
My twitching has stayed gone thank goodness*)!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm bringing this up because 1) I have twitches and was researching and 2) look how many people posted on here who are NO LONGER AROUND!!
YAY! there is hope!
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
I'm new and not yet on abx. I have two kinds of twiches: smaller ones that started in my legs but can be in my arms/back. These are worse after even mild exertion.
Then I have bigger whole body ones, just a coupe of time a day, like the kind you get when you are about to fall asleep but then get woken up.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
posted
Someone said it could be linked to babesiosis. Have you tried babesia tx?
Posts: 347 | From sweden | Registered: Feb 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I believe my twitches are linked to Babesia. As soon as I started Mepron, the twitches dissapeared and stayed gone for a good while. Since upping the Bactrim, the twitches have started again somewhat but seemingly at a lesser level.
But I really do believe the Babesia has been behind the twitches.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[bonk]](graemlins/bonk.gif)
![[Cool]](cool.gif)
![[confused]](graemlins/confused.gif)
![[lol]](graemlins/lol.gif)
![[sleepy]](graemlins/sleepy.gif)
((((hug)))
![[Wink]](wink.gif)
Printer-friendly view of this topic