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Lee's Story

I never saw a tick. I never had a rash. I do have Lyme Disease. It all began after a vacation to the Pacific Northwest in the spring of 1993. I was besieged by bizarre sensations that waxed and waned: stiff neck, cheek twitches, a flushed full face and neck, swelling under my jaw, crunchy sounds in my neck, a few low-grade fevers, mild hypertension that vacillated and an allergic-like, edematous reaction that included my eyelids and clavicle area. Sometimes I experienced an overwhelming fatigue in those first few months. It felt as though something was being disseminated throughout my body, and I was frightened.

Later I developed stabbing pains and burning pains, but perhaps my worst symptom was the boring pain in my central back at bra level. For the past five years I have slept in my trusty recliner due to the radicular pain and pressure that encircles my chest if I sleep flat. My nights were horrible due to the increase in odd sensations (neural activity perhaps) when I reclined to try to sleep. BOINGG! I would jerk awake just as falling into some sweet dream. After many drugs that didn't work, one neurologist suggested Neurontin. It continues to allow me to sleep, even now.

After 5 years, 15 doctors, a gallbladder removal (probably due to radicular pain), a loss of faith in the medical profession, a job I had to quit and after spending more money than I could afford, I purchased a computer and searched the Internet for an answer. Medical texts and doctors had failed me. Every symptom kept cross-referencing to Lyme Disease, but I knew I didn't have that as I never had a rash!

It took an obscure article about calf swelling in conjunction with Lyme to convince me that I very well might have Lyme. (My right calf was swollen) It took me four more months to screw up the courage to see yet another doctor, this time a Lyme literate MD. I had seen so many doctors and it is so emotionally devastating when your doctor does not believe you or impugns that it is "all in your head" that I did not think I could bear it to happen one more time. He turned out to be a human being and very conversant with Lyme.

So….now I know I have Lyme Disease (even a CDC positive WB) and I've taken antibiotics for eight months with some small improvements and ironically some new tendon pain in my knees and right arm, and I started a support group and I'm still mad as hell at the medical profession, but I'm not cured. Maybe this year I will be well enough to return to work. Maybe this year we will see Dr. Phillips' new diagnostic test become the standard and maybe this year we will find a way to get rid of this bug once and for all! Maybe the medical profession will learn to believe their patients. I hope so.

Lee Lull

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