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Muscle twitches as remaining symptom?

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Posted 2/23/2015 7:16 AM (GMT 0)
Here is a story so I am hoping you will get a picture and give me your opinion- I was bitten in April last year and my symptoms flared all the way, all joints were infected, back and neck pain, brain fog. After 6 months of various antibiotics, my doctor stopped with all therapy. Now, I still have occasional pain in my knees, hands or back during the day but its so minor. But my muscles still twitch all the time, like this morning the muscle on my hand twitches so much that my point finger moves on its own. When I contacted my LLMD he said that those thing might remain for a long time. Whats you stand point on this?
Posted 2/23/2015 12:08 PM (GMT 0)
One word - magnesium. Lyme strips us of magnesium and you should hopefully see great improvement with some. Just make sure it is easily absorbable. Google and research. As soon as I am low, I really know it.
Posted 2/23/2015 12:35 PM (GMT 0)
https://www.healingwell.com/community/default.aspx?f=30&m=3334766
Posted 2/23/2015 2:04 PM (GMT 0)
Ditto what springsjean said. I had this for about....4-5 months after lyme treatment. I was constantly having to adjust doses of magnesium, calcium to stop the twitching and then one day it just stopped.

I would just recommend a good supplement with mag, cal etc. and make sure you are on some sort of immune booster for at least a few months so you don't relapse. I will probably stay on mine for life!
Posted 2/23/2015 4:22 PM (GMT 0)
It's nerve damage. It will heal eventually
Posted 2/23/2015 8:37 PM (GMT 0)
what I wonder is how long it takes for it to heal? because I didnt have lyme for too long, I started IV treatment 2 months after tick bite, but within those 2 months I got every single symptom that lyme could bring
Posted 2/23/2015 9:05 PM (GMT 0)
Zoner, you went straight into IV abx after only being infected for 2 months?! Wow. Why not have tried the oral course first? Too severe of symptoms?
Posted 2/23/2015 9:46 PM (GMT 0)
Very severe symptoms, I could barely walk, all of my muscles were painful. Walking up the stairs was already impossible. All I could do is lay in bed and sleep.

Get this- before tick bite I was top athlete in my town, two months later, cant walk longer than a minute
Posted 2/25/2015 7:34 AM (GMT 0)
bump
Posted 2/25/2015 2:42 PM (GMT 0)
Zoner, I have terrible muscle twitching as well ever since I became sick. It was one of my first symptoms where I noticed something was going on, and it remains.

A lot of people say it's because of magnesium deficiency, but others say it's because of nerve involvement and infections. I get confused. I suppose both are probably causes, it just depends on the person?

Anybody have thoughts on this?
Posted 2/25/2015 5:19 PM (GMT 0)
Twitching was one of my first symptoms, too. And, I mean twitching all over the place - at different times, and sometimes simultaneously - arms, legs, butt, over the ribs, back, breasts....

I tried the magnesium, on the advice of a ND who said my muscles needed it. I started low and steadily increased, using the glycinate which is supposed to be the best one. I did this for about 6 weeks....no change in twitching.

But, I now know it to be my nerves....I have a lot of nervous system involvement - twitches, stabbing pains, weakness in muscles, vibrations, and had tremors for a few months.

For me it was definitely nerve related.
Posted 2/25/2015 7:38 PM (GMT 0)
Girlie, you and I are so similar!

My twitching is JUST like yours! It's all over my body, and sometimes different places simultaneously. Sometimes I can just sit there and watch muscles all over move around.

The magnesium doesn't help with my twitches either, which is why I think mine is more related to nerves. I have those other nervous systems you mention (stabbing pains, vibrations, some tremors, etc). You're thinking for you those are Bart, right?
Posted 2/25/2015 8:20 PM (GMT 0)
Yes Runnergirl - I think it is bartonella...haven't used antibiotics specifically for bart yet, but have been on the Buhner's herbs for bart since December.
Are you treating bart?


I hate the vibrations - they kinda scare me...like nerve damage has happened. But they're not there all day every day, so I figure if they're not always there, and it goes away sometimes, that there's a good possibility that they can go away for good. That's what I tell myself to feel better...lol
Posted 2/26/2015 2:06 AM (GMT 0)
Magnesium does the trick for most, but not for all. This is the one symptom I have remaining too, and no matter which brand of magnesium I tried while I was very sick, nothing helped. Some days were ridiculous with twitches to the point I couldn't sleep because the twitching would wake me up. My dr said it can take over a year for it to go away - due to nerve damage. And honestly, I know in my case it is indeed nerve damage, because as time goes on it occurs less and less.

what you have to pay attention to is the frequency and severity of the twitching. if it is going up and down and or getting more severe, then that would put my antennas up. were you ever diagnosed with Bartonella? Bc my dr believes that was the culprit in my case - Bart goes after the nerves just as much if not more than lyme in some cases.
Posted 2/26/2015 3:44 AM (GMT 0)
Yep Chapelle...my LLMD has diagnosed me with Bartonella and believes that is causing the twitching in my case. I am just about to start my medication for Bart. I've been putting it off I have to admit :(
Posted 2/26/2015 3:45 AM (GMT 0)
awe - what is your planned regimen? I hope it works for ya!
Posted 2/26/2015 3:14 PM (GMT 0)
My doctor is really suggesting Levaquin. I almost don't want to post that on here because I know I'll get a flood of warnings and horror stories, which I already am aware of. My doctor and I have talked about it, he is going to be watching me carefully. I'm very afraid to take this medication based on what I've heard many people say, although I've also heard many people say it was a miracle drug for their Bart.

I feel like at some point I need to trust that my LLMD knows better than I do, and I need to just go with it. But...can't help being scared.

Honestly, almost every antibiotic I've tried hasn't helped me or given me a herx (except when I took Flagyl before I knew it was Lyme). I took it for something "unrelated" and herxed like CRAZY. I haven't taken anything yet for Bart though...

How will you know the difference between herxing from a medication and just experiencing side effects of the drug?
Posted 2/26/2015 4:51 PM (GMT 0)
I too had muscle spasms all over the body and with abx and supplements they went away. However, the interesting part is that I thought that either magnesium or the Amoxicillin that I take took care of them. I was wrong.

I am slowly weaning off antibiotics now that I am on natural supplements. The first antibiotic that I stopped is Rifampin. Well, a week (maybe two) after stopping Rifampin, the spasms are back! In my neck, my legs, my stomach, my arms, my chest, my shoulders, everywhere I had them before.

I always thought that it was a lack of magnesium that caused spasms and/or that spasms were caused by Lyme. Yet I am still on amoxicillin, Monolaurin, CSA and here I am with my spasms. Can it be that muscle spasms are also caused by Bart?

I am going to add Rifampin back on and see how long it takes for them to go away.

Something else related to this; my eye coordination seems to have worsened as well. Seems that whatever is causing my muscle spasms is also affecting the nerve or muscles that control my right eye (most affected by infection) to where I have trouble moving it or focusing it.
Posted 2/26/2015 5:11 PM (GMT 0)
For those believing that magnesium deficiency is the cause of the twitching, have you ever had your magnesium level checked? Yes, it may be magnesium deficiency because spirochetes like to shell magnesium, but it can also be nerve damage. So how can we know?

I never had any twitching or vibrating, but my son has both. I have cramps in hands and legs specially when I don't sleep well, which is... most days. I wonder if anyone here have had their magnesium checked to rule it out as possible cause? Personally, I won't take magnesium because it makes the bugs stronger, hence, harder to get rid of them. But that's a personal decision. IF taken as an IV, it helps us, but any other way, it helps us AND the bugs. And I don't want to help them. Thanks!
Posted 2/26/2015 7:06 PM (GMT 0)
I had my magnesium levels checked and they were normal - however, my Dr said that even the magnesium blood tests arent' reliable - what test is when it comes to lyme anyway? LOL. But if what you are saying is true - then my case fits the bill - normal magnesium levels, magnesium supps didn't help = nerve damage was the cause.
Posted 2/26/2015 7:10 PM (GMT 0)
how did you fix the nerve damage chapelle
Posted 2/26/2015 7:23 PM (GMT 0)
My nerves aren't healed completely, time will fix that. But I did take PC Body Bio to help heal the nerves. I took 2 caps twice a day. It is good stuff. I can't tolerate it anymore - which means I don't need it anymore! =) - I stopped taking it about 2 months ago. I also took Vitamin B12 for a good while - don't need that anymore either. They are both definitely worth looking into (that is if you are not already taking B12) if you have nerve issues.
Posted 2/26/2015 7:48 PM (GMT 0)
Hey Healing98...your story makes me think the muscle spasms (at least in your case) were maybe related to Bart. Since Rifampin was probably keeping it in check, and then you stopped, the spasms came back...very interesting.
Posted 2/26/2015 9:32 PM (GMT 0)
Hey Chapelle

That PC Body Bio stuff piqued my interest.

My only symptoms at this point are buzzing/humming sensations and/or poking/tapping sensations that come and go.

Ironically, I developed these symptoms after starting treatment. Yes, I've had other symptoms when herxing and the above-mentioned ones are less frequent and not too noticeable.

Still, I'd like them to go lol

That said, as I'm sure you recognize, the product you took is very expensive. Are you able to share a reasonably-priced source for it.

And, I've found these on Amazon:

http://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=Phosphatidylcholine

Care to comment on them as possible alternatives?

Thanks!

Zoner - please forgive me if you consider this a thread hijack. You and I are in a similar position with a couple of minor symptoms (although my LLMD had me start an herbal protocol to hopefully knock them out and any possible co-infections)

Post Edited (cd3764) : 2/26/2015 2:36:19 PM (GMT-7)

Posted 7/24/2017 3:44 PM (GMT 0)

I am sick 23 years now and it feels like Lyme will never leave. I wish I knew if that Lyme culture test is accurate. I will scrape up what money I have left and have it if I could find out if this organism is still alive in me.
As far as muscle twitching it is 23 years now and my muscles twitch and you never know where they are going to twitch and how long it will last. Not painful but just part of this disease.

What is painful is the herniated discs in my mid spine with the right thoracic nerve wrapping around my chest. It started in that region years ago and will not go away despite a pretty aggressive round of IV, IM, and oral antibiotics.

It comes in cycles. The last 3 days have been hell. On the couch with migrating pain going from joint to joint and even feels like pain in the bone itself. The ringing in the ears gets very loud, the profound weakness especially in my legs, the malaise, insomnia, dizziness on and on.

I slept better last night and today besides the chronic bowel problems which I know now are due to the nerves to my colon which originate in the lower thoracic spine, I feel a little better where I can function a little. Sleep is so important with Lyme or Post Lyme.
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