Hello Pyr2,

I think we share more than a few symptoms. I have burning all over my body; numbness; tingling; crawling; heart palpitations; eye,face and throat pain; shortness of breath etc. I do have temperature loss from my wrists to part way up my forearm. My immune system is over reacting to heat to the point where my face is swelling up angioedema style and my doctor said she has never seen this. Good times! My symptoms came on very fast about 1.5 years ago; however, I've had some strange and subtle symptoms for over 10 years.

I'm seeing a Lyme Literate doctor this week. I live in Wisconsin (Lyme endemic state), was an avid mountain bike racer, and have been bitten by ticks of all varieties on a weekly basis. I was in the woods at least 2-3 days per week, every week from Spring until Fall, every year I trained and raced.

10 years ago I was bitten by a deer tick (not my first and probably not my last) and proceeded to have typical Lyme disease symptoms several weeks later (and not so typical symptoms too). I had nausea, extreme fatigue, I was dropping things at work, had feelings of electricity, heart palpitations, and had two seizures. I had 4 negative Lyme tests along the way. They tested me for MS and when that was negative, docs just shrugged their shoulders. Finally, they decided to give me a 10 day course of antibiotics and it slowly made me feel better, but not entirely.

After that particular tick bite incident, I've had strange symptoms over the last decade. I'd complain about my toe joint problems to my foot doc. The X-rays and MRIs would always indicate that the level of damage was not as bad as my pain level complaints.....until my foot doc actually saw my toe joint swell up and turn red one time. He didn't know why or what to do!

I'd get a bike injury to my wrist (long race in the cold - ulnar nerve palsy), but then I'd have burning pain for years after, even with a negative EMG (PCP always thought it was fibro or RSD related). Again, diagnostic damage would never match my pain levels.

I had a VMO/quad tendon overuse injury in my knee (which is extremely rare in a cyclist) where I went through 4 PTs, one famous sports medicine UW Badgers doc (PRP therapy), and 2 rehab docs. The pain burned in my knee for 4 years and would move around to the inside and outside of my knee and up my IT band. I was also getting the same thing in my spine and back. It was the last PT who told me that something was very wrong - and that I should have been better with all my rehab and something other than muscle-skeletal was going on.

Several times a year, both knees would always swell up to the point where I couldn't bend them. There was no test that was ever positive or that entirely explained these symptoms. I've had pain all over my body that I chalked up to being an elite athlete (pro card holder in cross country mountain bike racing).

Now I have burning all over my body and I have large fiber damage in my peroneal nerve that doctors can't explain - even the highly touted rehab doctor from the teaching hospital. I could go on and on........is this Lyme or a tick-borne disease? Maybe. Is this presentation normal? Hardly. Either way, tick-borne disease is the most important avenue to investigate based on my personal history.

I'm sorry you are dealing with this. This stuff is very hard to sort out and often it is hard to find a doctor that is willing to help you sort it out. I'd recommend a book called Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease by Dr. Richard Horowitz. I think this book will help you decide if you should keep pursuing the tick-borne disease angle or even choose a different Lyme doctor (there are many different philosophies how to treat Lyme). I'm also sorry that your husband isn't totally on board with you; however, make sure you don't burn him out by always telling him about your symptoms. Use this message board to vent, compare symptoms or ask questions. People on here will understand what you are going through.