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Jenna's Story

I look fine, heck-I look healthy. I don't act sick; I don't appear to be ill. I am often accused of making a big deal out of nothing. I get odd looks. I can't move much. I don't leave my home often. I am losing the important people in my life. I have Lyme.

My short story begins in February of 1999 when I got the flu followed by tonsilitis. I had severe headaches and minor body pains. I took the antibiotics to rid me of the flu/tonsilitis and although my symptoms cleared up, I didn't feel much better or different. The headaches continued. Lights and noises at school began to bother me. I am an honors student, I had Advanced Placement courses-my grades began to suffer.

I went back to my family doctor and he sent me to a neurologist. After a CT scan and an EEG, my family neurologist said it was a typical case of Viral Meningitis, something that would go away on its own. My family physician agreed, sending me home in pain. Weeks later, still in pain, my parents and I headed over to UPMC (University of Pittsburgh Medical Center).

The doctor I spoke with agreed with my family doctor and neurologist. Viral Meningitis. Still in search of an answer, my parents and I went to Children's Hospital in Pittsburgh. I was admitted. I could barely walk. I could no longer hold my head up for long periods of time, or eat. I didn't want to talk to anyone, I wouldn't call my friends.

After a spinal tap, too much bloodwork, and another CT scan, I was sent home with no answer, other than I was depressed. I came home from Pittsburgh only to get an infection in my uterus. I was hospitalized here with an IV of antibiotics. For the first time I felt relief. I could move! I was searching the internet trying to find the reason that I was so sick.

I found several web pages describing and discussing Lyme Disease. This was it! It took me a while to convince my parents to take me to a LLMD because I had already been tested for Lyme (the ELISA test) three times and had spinal fluid tested, all which came back negative. I found Dr. Swami and he believed every word I said. Not only did he believe me, he understood and listened. He found Lyme Disease and I am now being treated.

I don't know how long I have had this. I dont suspect it has been long, but who really knows? I am learning to overcome my anger and depression. I always say I wish people knew what it felt like but that I would not with this on any human being. I have graduated from high school, barely. I am not well enough to attend college this year, I must wait until the Fall of 2000. I know the wait will be worth it; I will appreciate it that much more.

I have Lyme. I'm not crazy. It is an ongoing struggle to help my friends and family understand what I'm going through. I will make it though, I am a survivor...we all are....


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