neuro symptoms first?

[Surruh]

Did anyone here experience neuro problems as your first symptoms? I have read that many people with lyme get achy, muscle pain and things of that sort. Me, it all started with tingling feet and sometimes hands with the freaky eye static and starburst. Then I got tons of muscle twitching and tingling that is now in my lower legs along with vertigo when I tilt my head a certain way. All of my symptoms are still occuring and fluctuate day to day.

The only "classic" lyme symptoms I seem to have is the twitching, cracking neck, heart pounding, and bad sinus problems all of which showed up AFTER my neuro symptoms. I also get weird chills/goosebumps constantly (which i guess is also a neuro problem.)

I went to a baseball game today and sat in 80 degree heat for 3 hours. When I got up to walk, my legs tingled more (although still not too bad) and I felt a little dizzy.

Anyways, anyone here with neuro symptoms as their first problems?

-Sarah

[wonko]

hajakay,

patsy10 is right on (as always) with her advice.  Lyme is very confusing, so you're not alone in your feelings.  Two materials that helped me a lot when I began to suspect that I had undiagnosed Lyme were the book "Cure Unknown" by P. Weintraub and the documentary "Under Our Skin."  Both have easy-to-find websites with a lot of info, and you can read part of the book and watch clips of the movie online for free.

As for not having insurance, be aware that many doctors who acknowledge and treat chronic Lyme do not participate in insurance.  Mainstream medicine follows guidelines by IDSA (infectious disease society of America) which states that even late-stage Lyme is easily curable through a single short-course of antibiotics.  The other camp, which is outside of what many physicians will consider, is ILADS (International Lyme And Associated Diseases Society).  ILADS doctors will go to greater lengths to test for and treat Lyme and other tick-borne infections.

I would suggest that you continue to research and ask questions to see if seeking out an ILADS doctor may be of use to you.  

munchkin102800, Maryland is indeed an endemic state.  I am in Montgomery county.  Lyme rates here quadrupled between 2006 and 2007.  When you go back to your neruo, try to push for a Western blot test.  There are two tiers of tests for Lyme, called "ELISA" and "Western blot."  The standard practice is to first do the ELISA.  Then if, and only if, it is positive, a Western blot is done.  However, if you have neurological symptoms AND live in an endemic area, your doctor should order the Western blot even if your ELISA is negative.  I wish I had known that.  My original doctor refused to order the Western blot after my 2nd ELISA came back negative, contributing to the delay in my diagnosis/treatment.

[patsy10]

Welcome to the MedHelp lyme forum.

hajakay:  Your symptoms sound much like lyme symptoms. Living in PA (a lyme endemic state) makes it more likely.  Even if you lived there in past years. It sounds like you have not had a medical workup for these problems.  It's possible you could have lyme but only a doctor could really tell you.  Other conditions that could cause these symptoms should  be ruled out or in. Lyme is much harder to cure in the later stages but there are people who are cured.  Everyone's body responds differently.  Symptoms can reoccur after treatment as the bacteria hides very well in the body.

munchkin102800:  You could ask your doctor when you see him or her again to order a lyme test.  I believe you are also in a lyme endemic state.

There is a lot of information here.  Both in the posts and the health pages.

[munchkin102800]

wow -all this sounds so familiar.  for the last year I have had the same type of symptoms.  I have never been diagosed with lyme but, I have another appointment with my neurologist.  but all my symptoms seem to be accociated with boils has anyone else had that.  

[hajakay]

Hello everyone,
I have been having a lot of symptomes that worry me. I have read some of your comments and they sound very much like mine symptoms. First I thought that I might be developing MS or ALS. I lived in Philly in 2004 and moved to NC in 2005. My symptoms started when I moved. It started with foot drops. Latter my hand started jerking whenever I write and I have occational tongue twitching. I over looked all these symptoms. About 5 months ago I was diagnosed with Bell's palsy ( DEC 08). Now I have developed allergies to things that I wasn't allergic to. I have muscle twitches all over my body. I have stinging muscle and joint pain. I sometimes also have blurred vision. I was wondering if this is definately Lymes disease or could it be something else? I do not have health insurance so I cannot see a doctor about this. What advice do you guys have?
Plus I have a few questions about Lymes disease: Can it be cured in later stages? Is life expectency normal? Do symptoms reapear after treatment? Please help I am so confused.

[ginak]

My symptoms started out after an infection. I started with joint pain and then 1 month later, my entire left side started to go numb with pins and needles. My left foot started to buzz and I also have symptoms on the right side, but not as bad on the left side. I am in the middle to treatment for lyme disease. I still doubt my dx, but at this point, I have to believe in something. I still have buzzing in my feet(mostly on left side), floaters in my right eye, tingling on both sides of my body that come and go. I also have shock like sensations in my body all over, especially in my face. I have tremors in my head and neck, which mostly occur at night.

I am only a month into treatment and all my symptoms are neurological. Sometimes, I don't really know what to think of all of this.

[wonko]

Yes.  I had mostly neuro symptoms for more than a year into my illness.  It started out very small, with tingling in my face and a weird electrical sensation on my neck, then grew to include the sort of confusing nightmare that SOONERMOM already listed.

It was not until after I was on steroids (which are very bad for Lyme patients) that I developed musculoskeletal involvement.  Even then, it didn't seem "Lyme-like," because instead of having one or two large joints affected, it was bilateral and worst in the small joints of my hands, feet, and then also my knees and into my lower back.  

Plus, of course, I don't recall a tick bite or bull's eye rash in my life.  I know you can get Lyme anywhere, and I currently live in an endemic area, but this started while I was living in Philadelphia.  I actually dislike outdoor activities because of my aversion to insects and the like.

Lyme can present in very unique ways.  The fact that the ticks can transmit other co-infections further complicates the picture.  I think the "classic" picture of Lyme is partially responsible for so many going un/mis-diagnosed.

[SOONERMOM]

My symptoms were only neurological for months.  I honestly didn't get the  joint pain until I started doxycycline after being sick for about 7 months.  I am just now experiencing the "fibro" like pain because I had to stop antibiotics.  It has been about a year since my  lyme diagnosis.

I started out with numbness/tingling/paresthesias on the left side of my face, and it eventually made its way all over the left side.  I also had a major increase in migraine headaches and some included bad nosebleeds (which I had never had before in my life).  

I had twitching and jerking, spasticity on the left side of my body.  My feet and face would  vibrate.  The top of my head would burn.  I had trigeminal neuralgia type stabbing pain, only a few times.  I also had really bad ear ringing that turned into daily stabbing pain in both ears that went on for months.  I felt like water was dripping off my forehead, but nothing was there.

I am sure that I am leaving out some ..lol