Undiagnosed nerve pain/twitching/tingling/burning - Concerned it may be LYME Help!!

I don't even know where to begin but my issues started in 2007 (muscle twitching in the calf muscles first) of which the doctor prescribed several drugs and ended up with Lyrica (which helped reduce symptoms). My symptoms did not re-present themselves until early 2011 when they came back with a vengeance. Tingling throughout entire body starting in feet, radiating into calves, quads and eventually into forearms and hands.

The neurologist did a very thorough blood workup and analysis of everything including testing for LYME Disease (B. BURGDORFERI AB SCREEN) and everything was negative including tests for Lou Gehrigs disease and MS. She also did scan of spine, MRI of brain, all negative. The official diagnosis was Benign Faciculations Syndrome
A higher grade dose of Lyrica was prescribed and over the course of 3 months my symptoms subsided.

I also had a second opinion from a renowned neurologist and he confirmed the same diagnosis.

All during this time period, I've had problems with fatigue, excessive urination and ringing in ears but have been extremely active in working out 6 days a week and eating very healthy.

Fast forward to December 2015 when my symptoms came back again only worse. I've been experiencing these symptoms ever since.

I went back to the doctor and they tested me for a variety of things (not including LYMEs) and everything was negative once again. They also retested me for Lou Gehrigs disease and MS. All negative..

My doctors answer is to increase Lyrica, introduce a new drug called Balclofen and another drug to mask symptoms. None of which are working! I'm at the end of my rope. The pain is utterly ridiculous. Constantly feel in a fog like state with twitching, burning, tingling all the time.

I've read a ton on LYME and although I don't have all of the symptoms I've got quite a few. I talked to a friend of mine who said that even though you may not test positive for LYME one time, you may still have it. What tests can I tell my doctor to run in order to rule this out? Or can anyone suggest a doctor in Wisconsin that may be able to help me with this issue. Need to find a solution....

Your symptoms sound very much like lyme & coinfections. I would suggest IGeneX western blot.

Oh Dean I am so very sorry you had to find us. I have no idea if you have lyme disease or not but because you are here, that speaks volumes. We have all been in your shoes - searching for answers. And ultimately we find out we have lyme. I hope you are not the same, but I think you highly suspect it.

If you would like to find a lyme literate doctor in Wisconsin here is a list.

/sites.google.com/site/lymedoctors/wisconsin

The reason we all went to a LLMD is because we got tired of all the other doctors testing us and testing us and coming up with no solutions. It can be a very exhau$ting endeavor.

Most LLMD's will send a blood sample to Igenex lab in California for analysis. It will take about 3 weeks for that sample to get back to the doctor.

In the meantime since you are suffering so there are things that help, IF you have lyme. And if you don't have lyme, they won't hurt you. It is called detoxing. All of us have some kind of toxin in us. If we drive down the highway with our windows open we are exposed. Take a shower in chlorinated water? Eat processed food? Detoxing is good for everyone.

You have half the battle won with eating healthy and exercising. Here are some detoxing tips you can do while waiting for your doctor visit. We all had to wait. I had to wait a month and then pay cash because they didn't take insurance! In order to protect our doctors we do not post their names. We want them to continue treating us.

Here is the detox link: www.tiredoflyme.com/detox-methods.html

If you have any questions at all (which when I was new I had a zillion) do not be afraid to ask. That is why we are here.

I hope this helps.

~Annette

Hi Dean, welcome to our community!

I suggest you get an Igenex Lyme Western Blot IgM and IgG test done - $210 for both.

You can schedule an appointment with a LLMD, and have him/her do the test...or you can order the test kit yourself from Igenex. Then get a Dr. to sign the lab req. and take it to a lab for the blood draw.
Three weeks later you will have your results.

Some people like to have their test results in hand when they go to their first LLMD appointment...others wait until they see the LLMD and then get tested.

We can help you find a LLMD. PeteZa posted a link to find LLMD's in Wisconsin.
You can also get recommendations from the forum members. Just start a new thread titled: "Looking for LLMD in/near _______" and fill in the blank.