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Suz's Story

In 1991 I went to bed on a warm summer night. Always healthy, ever active. That night I awoke with a 103 fever. Thinking I caught a flu, I let it run its course. 3 months later the course was still in full swing. I consulted doctor after doctor.

Various symptoms began hitting me: a sudden shift of a low blood pressure to hypertension, severe headaches, ear infections, conjunctivitis, my right elbow would swell periodically, one of my fingers suddenly went paralyzed for 4 months, I developed sinus disease, I began feeling exhausted, sometimes sleeping up to 16 hours a day, without relief. All tests were negative, antibiotics always helped, but once off the medication my symptoms would reappear. Because I was an ICU nurse the doc's all thought I had caught a superbug from the hospital. No one mentioned Lyme disease, ever.

4.5 yrs passed and I became sicker. My voice was a whisper, my body felt as if I was beaten with a 4x4. I had to crawl up my stairs, exhausted. I developed sleep apnea. Finally, my physician at that time became flustered as I was rapidly deteriorating and placed me on Cefotetan IV for 30 days (for sinus disease). I had 7 glorious pain free days, then on the 8th day I became sicker than ever. I managed to continue my IV course, only getting worse. The doctor didn't know what else to do for me. Then, through the help of a dear RN friend of mine, I was guided to a physician who began a treatment of oral antibiotics. I tested positive only on band 41, but was very symptomatic.

As time passed I began to see how my body "herxed" when we adjusted or changed my med's. I spent 11 months convinced that I would not survive the reactions, then I began to have small pieces of time that I'd feel better. Soon those good times began to compete with the bad times and I found myself able to participate in an exercise program. I continued to improve, and sought ways to aid my body through diet and rest. Today I am about 75% better. I measure my progress by the year -- It's slow but steady.

Through all my illness I began to notice my son going to bed and awakening with fever. I took him to his doctor, and through my pleading he had him tested for Lyme. The doctor assured me that I didn't have Lyme, nor did my son, but tested him anyway. Several nights later I received a phone call at 9pm from a very apologetic man, claiming Keith was indeed positive for Lyme; 5 bands positive. He was placed on orals then IV's, and I eventually had his records transferred to my physician. Both Keith and I continue to improve.

I still deal with many symptoms -- mostly, a burning spinal cord, severe headache, and numbness of my arms and legs. Keith has occasional fevers, and sleeps for long periods of time. We are on and off antibiotics as symptoms dictate, and continue to strive to improve our diets and maintain an exercise program. I'm proud to say, we both received our black belts in Taekwondo. I am in a state of shock still, to think I did that being so sick. I will never give up the hope that one day we will be symptom free. I thank God for guiding me to one of the "good" doctors. One who listened, conceptualized and was willing to try a plan of treatment that eventually worked.


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