So am I getting Lou Gehrigs? It's all over my body and constant,
and it was starting before I went on these abx
Posted by CaliforniaLyme (Member # 7136) on :
LOTS of people twitch!!!!!!!!!!!!!!!
Posted by treepatrol (Member # 4117) on :
Are you taking all the suppliments?
Magnesium,B complex vitamins,one a day vitamin,cq10,Get a B12 shot see what happens Iam glad I started them.
Posted by JasonK (Member # 14071) on :
Adam its difficult but you need to chill the stressing is only driving down your immune system causing this disease to just get worse. You are being treated it just takes time but one day you will get to the other side.
Posted by adamm (Member # 11910) on :
What would I be experiencing if it were ALS?
Posted by painted turtle (Member # 7801) on :
Adam,
I am twitching all day every day too.
Today the heat and pain is radiating to my entire left leg from my knee and hip, it feels like my knee is being mangles and the weakness is immense.
I have also lost feeling (numbness)
For a long time, worry went with me everywhere in this illness because it is indeed scary and it interferes so much with life and life expectations.
In fact I think worry was actually a symptom given that most doctors said there was nothing wrong with me for the longest time.
Stick to your treatment.
Don't worry about the ALS, just keep going.
Posted by map1131 (Member # 2022) on :
adam, go back and read treepatrol's post. Are you taking good quality supps that your body needs?
This is one weird illness and you are liable to experience many sx that scare you doing abx to kill off the lyme & company.
Don't worry about the ALS thing. Give your body some good stuff to fight the bad stuff.
Pam
Posted by adamm (Member # 11910) on :
Yep--I'm supplementing with c-q10, omega 3, magnesium, probiotic, and a multivitamin.
Posted by CaliforniaLyme (Member # 7136) on :
Adamm, twitching is caused by calcium ion dysregulation and magnesium dysregulation often secondary to that when it is with Lymed people. Free calcium causes twitching- and there was an article chowing that the Lyme spirochete unbinds calcium FROM muscle!!! SO, supplements WILL help with symptoms and are a great idea, but you will also get rid of it only when the Bb is eliminated from your actual tissue if it is from Bb!!! So just keep on what you are doing and I expect it will stop- I had EVERY kind of twitching you could name- and it is ALL gone!!
Posted by merrygirl (Member # 12041) on :
I twitch all day and night. Seems to be getting better. My belly muscles even twitch and spasm.
Try to relax a bit, I know it is hard! Melissa
Posted by JasonK (Member # 14071) on :
Melissa,
Lately i have been getting the muscle spasms in the stomach area - often wondered if that constituted for a sit up and a six pack would form! Posted by hanginginthere (Member # 11685) on :
Speaking of stomach twitches, I get those fluttery kind that remind me of when I was pregnant!!
Of course, that's not an issue for you, Adamm I understand how it feels to be scared you have ALS. It helps me to focus on the symptoms I have that are consistent with infection, not ALS (of course, the twitching is impossible to ignore!).
Do a search of old posts about twitching and take comfort in how many of us there are that share that symptom! Like Sarah said, it's very common!!
Hang in there!
Posted by heiwalove (Member # 6467) on :
twitching is common in lyme patients.
try not to worry so much. it's hard, i know, but worrying will only make you sicker. take a deep breath. Posted by joysie (Member # 11063) on :
Adamm I have been twitching for a year. It is just starting to diminish.
My mother had ALS. The twitching we get is very different. All the ALS patients I knew-and I came to know many-had very localized twitching.
It's not this random, all over your body stuff that we get.
It will get better. You do not have ALS.
Posted by cjnelson (Member # 12928) on :
We are just a bunch of twitchers arent we! Lord knows I am!
Use to really scare me, worry me, if you will, now I know it comes and goes but I still hate them!
Its all a process Adamm and you are on the right track. stress does make it worse, it always does for me. Stressful days or events always exacerbate whatever is going on. If I am twitching and I get stressed they seem worse and then other stuff flares from taht too.
Its like my body is trying to deal with the stress and since it is dealing with that it cant focus on keeping this other stuff in check, does that make sense?????
Hang in there!
Posted by roro (Member # 13383) on :
my twitching got MUCH better with treatment (antibiotics).
I just noticed my son is twitching and he is ON antibiotics.
Posted by merrygirl (Member # 12041) on :
quote: Lately i have been getting the muscle spasms in the stomach area - often wondered if that constituted for a sit up and a six pack would form!
I wish!
Imagine if we were all in a room together?
We would all be twitching like crazy! lol
Melissa
Posted by kam (Member # 3410) on :
My twitching is few and far between now. But, I was amazed at how annoying it was.
My is like something is moving under the skin or twitching all over the body.
It seems to happend when I am also going through a rough time health wise.
Posted by Just Julie (Member # 1119) on :
I think I posted an answer to one of your posts on twitching, it wasn't that long ago, I hope I didn't come off too strongly, but I do have experience with this particular symptom, and it's been 8 years of twitching for me.
I twitched as one of my first "symptoms" and I twitched through 4 years of constant abx taking, all different types of abx combos, all oral, none were IV.
I twitched when I took magnesium supplements, at least 4 different types of magnesium. One mag supplement that made my twitching WORSE, yes, worse, as in MORE AND MORE INTENSE, was "Mag Tab SR", the one that Dr. B's guidelines suggest taking.
I did not take any more mag supps when I noticed that the Mag Tab one was making my twitching worse. I could not stand this symptom, it was driving me mad. It worried me, made me think I was misdiagnosed with lyme, and not ALS or MS. At times, the twitching became so prominent, that I could not sleep--meaning I would have twitching in one particular muscle (like my abdomen, or finger, or thigh) and it was constantly there for at least 2-3 weeks. 3 weeks of stomach muscle twitching (same muscle) had me trying a few different sleeping pills (Restoril and Ativan) and medications to allow me to sleep through the twitching.
I have been having this twitching for so long, that I now believe I can live without noticing it. At least for some periods of time.
I can also tell you with 100% truth that stress (psychological and/or physical) means that I notice more twitching going on. I believe this is tied to the adrenaline that comes with the stressor.
I can't back up the stress/adrenaline tie, but I have seen it happen in my own body 100% of the time. Meaning, that when I notice I am under attack, either mentally or physically, I can correlate that happening to a very physical twitching sensation becoming more and more noticable. It is quite profound, which led me to believe that adrenaline has a very big part in the excitablity of the muscle that twitches.
Love to hear science/medical basis for this occurance. If I had half a brain left (lol) I'd try and search this out, but for the time being, I'm relaxed enough now to realize that I do NOT have ALS or MS and the twitching is just something I have to live with.
As a side note, try asking people who you KNOW do NOT have lyme (or have not been diagnosed yet) if they have noticed that their muscles twitch. And not just their eye lids. Be specific, and you'll be surprised. I've done this, and there are so many folks that have muscle twitching, yet do not realize anything else is, or could be, going on. They just think it's "one more thing" and do not talk about it.
Hope this helps! I'm a long time twitcher, and this forum has been very comforting with this particular symptom. . .
Posted by adamm (Member # 11910) on :
Thank you all so much! I was just so freaked about
having a terminal condition. Please--don't worry about
coming off too strong--you put up with my nuttiness like
saints!
Posted by Aniek (Member # 5374) on :
I'm happy you're feeling calmer.
How much magnesium are you taking? I also know one person who's twitching stopped when he started taking calcium. My understanding is that you want to take the calcium away from the magnesium because they can bind.
Make sure you tell your LLMD about it at your next visit.
-Aniek
Posted by Ellie K (Member # 12056) on :
klonopin saved me during convulsions-- bad babs herx. i needed 2mg minimum, and i had to chew for faster absorption.
i was doing the fish on the floor for at least an hour.
Posted by mikej2323 (Member # 8913) on :
ALS is a diagnosis of exclusion. I'm convinced there are multiple causes of this disease. It is not ALS unless there is weakness present. If you have muscle atrophy or spasticity present, I would recommend nerve conduction velocity and EMG testing. These are not comfortable tests, but needed. A muscle biopsy should also be done as well as nerve biopsy and a lumbar punctures. Again, more uncomfortable tests- but needed.
when I first discovered that I had LYme I was a little nutty too.
Don't worry, that too will pass (Zen khon)
I consider my anxiety part of my illness and as it has subsided, I count this as part of my overall improvement.
It'll happen. Just wait.
BT
Posted by Mathias (Member # 5298) on :
Adamm,
I feel your pain, I was in the same place you are a number of years ago. You don't have ALS. Relax and take you antibiotics. Things do improve but it does take time. I've been twitching since September 2003. No ALS here.
Posted by mookiewill (Member # 14743) on :
Adamm I'm in the same boat. Muscle Twitching was the first symptom I noticed really. It has been the most constant of all my symptoms. Anixety is part of Lyme and it does make the twitching worst. I was also told I have ALS.
In October, which was about the 3rd month, at night I would wake up with a buzzing in my belly. My hands would go numb. If I didn't get up, the buzzing would come back stronger an hour.
Some suggsted that this is part of the Sympathic Nervous System having been cranked up and out of whack. Part of the normal function of the Sympathic is to pre-wake up the body in the morning by increasing the blood pressure and blow flow.
Bb has a strange effect on the body. We're in your corner. I pledge to remain calm through all the rough days.
Unless I freak out again. Posted by BJK (Member # 13251) on :
You are intelligent--you really are. You care about yourself and are involved in your own treatment. You care about others, too.
You are going to have a great life!
With what you are taking now: I would add 50 mg of B-complex, unless it's already in your multiple vitamin. B-complex supports neurological stuff.
Show your folks how much we think of you!
daise Posted by swedish lyme sufferer (Member # 14579) on :
Hi!
I know what you mean with that panic! I have it too. But I think there seens to be quite a few who have twiching and that havn't really addressed their bart-problem.
I'm beginning to think that this is a clear bart problem and that you should try a quinolone?
Have you?
My friend does right now, her twitching is almost gone, only 7 days into treatment!
![[Big Grin]](biggrin.gif)
![[Wink]](wink.gif)
I understand how it feels to be scared you have ALS. It helps me to focus on the symptoms I have that are consistent with infection, not ALS (of course, the twitching is impossible to ignore!).![[Smile]](smile.gif)
![[Frown]](frown.gif)
and he is ON antibiotics.
![[lol]](graemlins/lol.gif)
![[bonk]](graemlins/bonk.gif)