Im tired of the tingling and twitching in arms and legs. My face has even been twitching. Not to mention, I wake up lately with my arms feeling like lead.
Does anything help this at all? Im back on Pamelor and I am still on amoxycillin. I was feeling so good for such a long time. I was so sure it was the Nexium causing this. Ive been off of that for a couple days now though and still no changes. Uggh.
Nancy
Posted by pattilynn (Member # 8065) on :
I have no advice to offer but I will say that I have been living with these exact same symptoms for over a year now. It really stinks. I'm just so tired of it. I completely understand how you feel.
Patti
Posted by Jill E. (Member # 9121) on :
I have these symptoms big-time along with all sorts of nerve issues - it's around-the-clock for me. I can totally empathize, but unfortunately have not found a solution.
I will say I think I'm getting worse with it perhaps due to Bartonella - had to stop medications early for Bart but symptoms are worsening.
Sorry, this is hardly a cheerful post, but at least we are not alone with these bizarre symptoms!
Jill
Posted by trails (Member # 1620) on :
count me in here. primarily right sided shoulder/arm/hand but can strike anywhere at any time. comes and goes without provocation.
Posted by caat (Member # 2321) on :
I had them really bad when I first started antibiotics- it can be a herx reaction. It felt like bugs crawling under my skin. It went away after a few months on doxy.
Posted by Robin123 (Member # 9197) on :
Right-sided: shoulder, arm, little finger; also right side sciatica. Nerves and soft tissue messed up by Lyme...
At least I know now what's going on -- I didn't for almost 25 years and had lots of explanations(from me and others) for what was going on, all of them wrong...
now I'm letting everyone who tried to treat me know what happened -- a little bitty tick with all this power...
Posted by dguy (Member # 8979) on :
I had the tingling parathesias for years but they greatly diminished after about 6 months on the MP. Note the treatment initially made the parathesias worse, but after a couple months the improvement kicked in.
Posted by davidx (Member # 8326) on :
You can also count me in on this one. The question I continue to have regarding these nerve issues is whether or not permanent damage is done by lyme. I know others have had their symptoms get better but the futher out in time I go the more I wonder whether mine might be permanent.
-David
Posted by Nal (Member # 6801) on :
I have to go to work tonight and i feel like crap! My right arm is tingling really bad, my left leg feels heavy, im so tired. I just hate all; this. I love how all this really flares when it's that time of the month for me too.
Nancy
Posted by Sue vG (Member # 3143) on :
Yes! Parasthesias, including twitching, bugs crawling, tingling, tremors, electrical shocks, nerves irritated to the touch, migrating sticking pains, etc., etc., were among my first - and scariest - symptoms.
Once I learned what was causing them (lyme) and got to work on the problem, I relaxed about them.
While they can be distracting, I guess my take on them is a bit different from many posters.
I see them as a barometer of how I'm doing. If I slack off on my abx, diet, or supplements (which include vit. B12) - they get worse. If I get unduly stressed or fail to get enough rest - they get worse. If I'm fighting a sniffle - they get worse.
If I'm doing what I'm supposed to be doing for myself - they're not so bad. If I know that I'm doing what I'm supposed to be doing and they get worse anyway, that's a clue that maybe something else is going on that needs my attention.
Since the parasthesias are so "informative", I choose not to suppress them with drugs.
There's an even more important reason why I choose not to treat these symptoms: I only have one liver and want to keep it as clear as possible to process only drugs that have the potential to kill the lyme.
To state it another way, I want to focus my treatment on the disease that is causing the symptoms, not the symptoms themselves.
Once the lyme is gone, then all the annoying symptoms will go away, right? (Since I don't believe in "post-lyme".) Well, that's the dream that keeps me going.
Occasionally I do have to take some naproxen for my ruptured lumbar disk and sciatica, or the occasional sinus pill, but my thyroid meds and antibiotics are the only meds I NEED.
So, I guess I'll just sit here and let my little friends - Pop, Twitch, Jab, Tingle, Flutter, Vibrate, and Zap - keep me company. Who says Lyme is a lonely disease? Posted by wiserforit (Member # 9732) on :
Sue vG!
your little friends - Pop, Twitch, Jab, Tingle, Flutter, Vibrate, and Zap sound like a cross between the Seven Dwarves and Rice Crispy cereal!
wiserforit
Posted by cactus (Member # 7347) on :
Pop, Twitch, Jab, Tingle, Flutter, Vibrate, and Zap - some of my good buddies, too!
Posted by notcrazykate (Member # 10458) on :
I'm with you on this one.
My first symptoms were of this sort, along my left arm/hand, right leg and face. Happens in all limbs for me now sporadically, but most often in those original places.
Still haven't found anything that helps, but also still haven't really started treatment.
It can be soooo frustrating! Sorry you're going through this! Posted by CaliforniaLyme (Member # 7136) on :
ALL GONE with IV Rocephin*!)*)!*!!
Posted by Travlr1 (Member # 9681) on :
Nal,
Me. I feel that this obviously indicates some amount of involvment of the neuro system so get on a abx. that crosses the blood brain barrier, if your are not already on one(I have full blown AlS/lyme and have gotten somewhat better).
Rocephin IV is what turned it around for me.I am not cured and have a ways to go, but I have been told by an llmd who I believe is fantastic that the neuro symptoms are some of the last to go.I experienced literally hundreds of muscle twiches a day for many months and they are just starting to taper. :)Also Klonopin(often used for sleep seemed to help with the twiches.
Take care.
Travlr1
Posted by catalysT (Member # 10786) on :
Magnesium !!! A good magnesium, zinc, and taurine supplement. Calcium may or may not be needed, as calcium inhibits mg.
Magnesium I personally use magnesium orotate (mag oxide is crap, it has a bioavailility studied to be as low as 3%), by Kal brand. It doesn't cause bowel problems like oxide does, and...
Zinc Zinc gluconate is a good form of zinc to get. I'm using Twinlab brand zinc caps (zinc gluconate dihydrate, zinc picolinate), it's real cheap (I got it off either i-herb or vitacost).
Taurine For my taurine, I bought source naturals brand taurine powder/crystals. I got a 100 gram container pretty cheap. It's tasteless so I just mix some in water and drink it in a swig.
Calcium If you want to try supplementing with calcium too, don't take it at the same time as mag or zinc. Good types of calcium supplements are: Calcium Gluconate, Citrate, Orotate. Avoid the oyster shell sourced, it can contain metals and contaminants.
Considerations Make sure your getting enough potassium (and salt). Supplementation may be needed.
I'm willing to bet if you take some good magnesium, at high enough doses (100-500% RDA), your condition will at least improve. Mag is usually more useful for twitches/tics, but mag & calcium deficiency can cause those symptoms too.
Buhner even said in 'Healing Lyme', that magnesium deficiency is a problem with LD. Be sure to talk to your LLMD about taking supplements, because taking magnesium (not sure if at the same time, or in general) can interfere with the efficiency of some antibiotics (I think moxifloxacin is like that).
I swear shortly after switching to mag orotate, My chest pains went away. Magnesium, Orotic acid, and Taurine are also all cardioprotective (protect the heart).
Keep in mind, chemicals like magnesium DO other things besides just serve deficient and non-deficient states. Magnesium is an NMDA antagonist, and can produce effects beyond it's normal use, when taken in higher doses.
Other things to consider are gabaergic drugs. Gaba might even help in sufficient doses (1-5g). Phenibut might help too. Also like people said in the above posts, tics, twitches, myoclonic jerks, are likely all caused by having a LD infection to begin with, so my suggestions may only provide symptomatic relief.
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