Could it be from Lyme's

[SharonAnn61]

My husband, now 52, has had two confirmed cases of Lyme's disease in the past. He was treated with the standard tx of antibiotics. Over the past several years he has developed an unexplained "jerking" of his muscles when he sits down at the end of the day. Over the past year this has increased to the point of feet and legs jerking all through dinner, arms randomly "flying out" to the side, facial muscle jerks sometimes snap his jaws shut or protrusion of his tongue occurs. The neurologist has ruled out ALS, has done EEG and brain MRI and nothing has shown up as cause.
She has tried him on Lamictal and Keppra, the latter having very unpleasant side effects that he does not want to live with and neither med has stopped the jerking. The condition seems worse when he is very fatigued which is often due to his job. I am wondering if Lyme's can lay dormant and cause problems years later. He has not pain or muscle weakness. He is not overweight and exercises as often as he can when home. He is not on medication for any other medical condition. His sister has been diagnosed with Fibromyalgia.

[Lori707]

I just read this post for the first time. JackieCalifornia is very knowledgable.
I have Lymes for 24yrs. I first had gotten a bulls eye rash and a positive lymes test. Was given 2 wks. of antibiotics. A couple years later I wasn't feeling well again. I didn't have the rash and kept getting negative tests until it finally came out positive. This time I had IV Antibiotic therapy for 3 wks. Four yrs ago my world came crashing down. I was so sick and no doctor that I went to, and there must have been about 11 not including two hospital workups. I was told it's psychological. Then a doctor gave me the Lymes test that I PLEATED to get one for.three years. It came out POSITIVE! I was put on a PICC line for IV therapy for 28 days.  That was a year ago. A few months ago I FINALLY found a fantastic LLMD! This doctor also has lymes for the past 20yrs. From what I have learned, once you have Lymes you always do unless you can get good treatment within a month of being infected. The trick is to keep it in remission. Lymes makes the immune system low and vunerable to autoimmune diseases, etc. I got Hashimoto's Thyroiditis, "autoimmune phenomonon" (if I spelt that right). My RA Factor is elevated also. My gut is terrible and full of Candida which is making my PH terrible. I'm going back onto antibiotics once my candida is under control. This doctor put me on wonderful suppliments and trying very hard to increase my immune system which shows low and put me in remission.
I do want to tell you that for the past 4yrs I have had those neurological symtoms that your husband has. I have been tested and tested. I now have autonomic and parathesia.  Some tests came out abnormal. This is from the Lymes that is doing damage. My LLMD thinks I'll feel better once I go back into remission. If I found this doctor 4yrs ago, I wouldn't have these problems. I now take Gabapentin,Plaquinil and losts of supplements. I'm on a special diet that has made me feel so much better.
Your husband should get tested for CD57 (tests the immsune system), Candida Albicans, Hashimoto's Thyroidosis (EVEN if his thyroid panel is normal!!), RA Factor, ESR, C-Reative Protein, CCP,etc.

Please update me on your husbands status since you posted in Oct.
Be well !

[JackieCalifornia]

Welcome to MedHelp.

No one here that I know of is medically trained, so we can't give medical advice, but will be glad to communicate the experiences we've had ....

From my reading, it is quite possible that the standard treatment with 2 to 4 weeks of antibiotics for Lyme may not be enough.  Not everyone gets the famous bulls eye rash or sees the tiny tick, and truly the medical profession does not know very much about Lyme and its persistent infection.  Neurologists and rheumatologists and infectious disease docs, all of whom should be on top of the situation, too often are not.  (Fibromyalgia is sometimes a catch-all diagnosis given for what turns out to be Lyme, btw.)

From what I read: Lyme patients sometimes get muscle twitches and cramps because the Lyme bacteria use magnesium in their reproductive cycle.  Blood tests don't show low magnesium, because the magnesium is mostly *inside* the cells, not in the bloodstream, so if there are Lyme bacteria scarfing up the magnesium, the blood tests don't show it until the levels are extremely low.  Low magnesium in muscle cells produces ... yes, twitches and cramps.

I personally ended up in the ER twice with heart irregularities (the heart IS a muscle) before I was finally diagnosed with Lyme by another doc, and on both trips to the ER, they thought I was having a heart attack, put me on IV drip with electrolytes (including magnesium) and within an hour I was feeling quite good.  The difference is just THAT dramatic.

I continue to take magnesium supplements now, but was warned that too much magnesium will damage the kidneys (I was taking 150% of the minimum daily requirement [MDR]), tho I have read in other places that you will get diarrhea from too much magnesium before it affects the heart.  (The traditional laxative has always been Milk of Magnesia, right?)  I now take 100% of the MDR in pill form, and I've read that any type of magnesium ending in -ate [malate, orotate, asporotate, etc.] is the most absorbable.  

I do not know if this would help or conversely hurt your husband, but it's something to think about.  

However magnesium will not cure Lyme.  Therefore I would suggest that you find a Lyme specialist for an evaluation.  In some states, docs who treat Lyme with more than the standard few weeks of antiobiotics are hauled before the local/state medical board, so many Lyme docs are very very quiet about their practices.  Finding one can be a hassle, but it's worth doing.  

A Lyme specialist can be any kind of doc, a GP,  internist, etc., and sometimes even an infectious disease doc, but the ID docs, rheumies, and neurologists are known to be very against diagnosing/treating Lyme, and they can be quite rude about it.  It all depends on the individual doc.  You'll sometimes see the term Lyme Literate MD, or LLMD.  It's not an official designation, it just means any kind of doc who has an open mind to Lyme as something not hard to get or easy to cure.

Here are some websites that might help to find an LLMD:

lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
   and if you're in Texas:
standupforlyme [dot] org
txlda [dot] org

Also look at ILADS [dot] org.  It is the main group for LLMDs and others who take Lyme seriously.  There is lots of good information there, and under the tab 'About Lyme' there is information called diagnostic hints and treatment guidelines by Dr Burrascano.  It's a bit heavy going, but you might find it interesting to understand more about Lyme.

Your husband may well not have Lyme, but since he has had it in the past, it may have persisted or he may have gotten it again without knowing.  From my family's experience,  I know that someone can have Lyme and not know it until reinfected or until tests discover a quiet case of it.  It's a sneaky disease.

Also an LLMD would, based on symptoms, perhaps order tests for other diseases carried by the Lyme ticks -- it's not uncommon to have 'co infections' that have their own rotten symptoms and need different medication from 'just' Lyme.

To my nonmedical knowledge, an EEG and an MRI would not be diagnostic of (or rule out) Lyme.

Also, just because your husband doesn't have the same symptoms as someone else with Lyme, that's not determinative.  Lyme affects everyone in different ways at different times, which is part of what makes diagnosis so difficult.

I hope this has been helpful ... let us know if there's anything else.  And let us know what you find out!

Best wishes to you both --