Restless leg syndrome?

I'm having a terrible episode of restless leg syndrome tonight Does anyone else have this symptom? It's in the same foot and leg I have the most nerve damage in so it's gotta be related.

Looking back 10 years ago (in hindsight of course) it was during my pregnancy that my lyme symptoms came out....I had terrible restless legs during my pregnancy....but I haven't had this symptom of restless legs in YEARS.

I also have a hard time moving my legs when I walk. I just feel stiff, rigid and jittery. This comes and goes but it's happening more frequently now.

Lyme disease sucks.

Interesting...my llmd diagnosed me with bart. Although he didn't order the test for bart. I think i just had so many bartonella symptoms that he didn't feel it was necessary.

I said in another thread that he wasn't testing me for lyme but I misunderstood. He did test me for it, it's just if it comes back negative he will treat me either way.

Anyway. Yes this death leg syndrome is just awful!
He prescribed tindamax which I haven't taken any of it bc I didn't need it. I took some tonight and hopefully it helps soon.

I experience this as well.

It was really bad this past summer when I still had some leg muscle, then eased off somewhat over the winter, but has now returned.

Only happens at night for me and in the morning when I wake I'll also experience an uncontrollable muscle contraction in lefts. I don't now what causes this, but would guess its neuro.

My Mom has had restless leg syndrome for years. Just before bed she eats a piece of banana and a small glass of milk.

She says it is a lack of magnesium and calcium.

My llmd has me on magnesium malate. Just took it for the first time last night. My supplements just came in the mail yesterday.

Hopefully it will help. I get this really sick feeling in my leg and foot with that awful restless feeling...It's hard to explain.

Oxcarbazepine is the name of the nerve pain med.

Magnesium butter..interesting..I hadn't heard of it before!

Oh! I just thought of something else that has helped. The menthol "blue rubbing alcohol". I recall rubbing that on my feet and legs to get enough relief for me to fall asleep while having RLS. Its only like a dollar and some change so it would be worth a possible shot. It only provides temporal relief, but sometimes some relief is better than NO RELIEF.

I have my bottle right here and its called "ISO-BLU and has 4 ingredients of: Isoproyl Alcohol, Menthol, Eucalyptus and Camphor. For fast temporary pain relief for aches, soreness and strains".

I recall being so frustrated and jumping out of my bed and rubbing the alcohol all over my feet and legs and then it would feel like a good "AHHHH" relief feeling enough for me to fall asleep. *Just make sure after you rub it on, you go directly and wash your hands real good because one time I didnt and accidently touched near my eye and needless to say that was not fun having to flush my eye out over and over.*

The alcohol also helps in general for any other lyme aches and pains too (massage on achy back or its good to rub on a stiff neck, etc.).

Anyways thats just something else I thought of....hopefully you find some relief soon :)


-Courtney

Hey Girlie, yes that was me...good memory! Well I had got that symptom resolved for quite some time but unfortunately I am currently relapsing :-// I want to say it has something to do with the autonomic nervous system or the adrenals or something along those lines. I remember it being really bad in my heavy herxing days though. I had acheived about 85%-90% of healing back in the Fall but because of my ins. not continuing to cover meds (Mepron) I just ended up enjoying life for a little while but then started to feel distinct symptoms creep back up Dec-Jan(which I am so kicking myself in the butt for now btw sigh). I keep telling myself if I got there before I can get there again though and this time I will NOT stop treating.


At any rate, I am trying to remember as its been so long. I do remember another lyme friend of mine who was in the medical field saying that it was because of being "stuck in the fight or flight mode" due to the infections throwing stuff off and that he would take childrens benedryl to help level him out with that. I remember trying it but I dont think it helped me too much from what I recall. I also hate taking benedry though. I wish I had a direct remedy for it Girlie but for me it subsided with treatment and with a possible from Ashwaghanda as I took that back in that time that it resolved for me. The main 3 drugs that have helped me the most have been Doxy, Zith and Mepron. I got far with the first 2 intracellular abx (approx 75%) then Mepron got me to about the 85%.


Right now, I basically just have the "antibiotic-fatigue" (I think it was I heard an llmd call it when a patient gets tired of popping so many abx for so long) so I am giving the herbs a whirl and praying they can do it for me. So on that note Ms Girlie....have you decided to try and target a possible babesia at all? I recall reading where you have thought about it on and off. I was so scared to take the Mepron initally. I really didnt even herx much while on it but once I stopped taking it, it was hindsight that I realized how much it helped me. If its not babesia for me, I know Ive got some sort of parasitic/protozoal thing I need to seriously address as my biggest issue. Im thinking alot about the major biofilms that come with these too (i.e. the Fry bug FL1953/Protomyxzoa)


All in all, if you dont think you are herxing thats causing the shivering/adrenaline rushes..possibly there may be another underlying "something" that you have not been hitting with treatment you've been on. I wish I could be of more help to you Girlie as we both joined this forum around the same time and I wouldve hoped we both wouldve been done with all this lyme mess by now :-/


Here is my #1 fav symptom list that I personally have found to be the most on point when I go through the whole "trying to figure what tha h*ll is going on with what symptom"....
www.mybrainhealth.org/files/Lyme_check_list_06_01_12.pdf

I sincerely hope you can get to the bottom of whats causing that for you Girlie. You are such a great help to everyone and give back so much on this forum as a moderator.

xx's-Courtney

I've always considered RLS as a dysfunction of the neurotransmitter pathway. This could be due to many different causes, Mg deficiency being one of the major causes. Another could be Vit D deficiency or blockage. Vit D directly helps in the production of Dopamine which leads to nor-epinephrine production and nor-epi imbalance/fluctuations could certainly cause the symptoms of RLS.

Your COMT and MAO status plays a big role as they help change dopamine into DOPAC which is an acid. The problem is that we Lyme patients have a lot of hydrogen peroxide floating around our body attempting to destroy pathogens and this hydrogen peroxide oxidizes DOPAC into toxic substances which damage the substantia nigra in the brain. The substantia nigra is a major source of GABAergic inhibition so by damaging this area, we decrease inhibition and increase excitation. Supplementing with GABA or glycine may be a temporary fix as would reducing glutamate levels. Tyrosine supplementation may be beneficial. The best fix is to correct any imbalances which may occur and reduce pathogen load which decreases inflammation. Inflammation could be considered the root cause but the pathogens are causing the inflammation. Imbalances or deficiencies can be with tryptophan, tyrosine, arginine, biopterin, Mg, Vit D, Cu, SAMe, or too much S-Adenosyl-L-homocysteine. Increasing the pH of your food will help as well.