Katie's Story

To: The editors of "Spotlight on Lyme",

I have recently moved here from Westchester County, NY. My mother and I both have been struggling with Lyme for about two years. I know being a 17-year-old, there aren't many understanding kids out there, or many that I can relate to. I have received two of your newsletters and have enjoyed and appreciated them very much. I noticed that you have published some stories that Lyme patients have wrote. I love reading them cause I feel that I'm not alone. Maybe you could publish this story so kids out there my age with Lyme could feel like they're not alone. Thank you for your time.

God Bless, Katie Lighthall

It was the Summer of '95, and I was heading into my Junior year of high school. I lived in Scarsdale, New York, an endemic area for Lyme disease. Ironically, I knew nothing about Lyme Disease. I just saw those posters in my school and ignored them, thinking I'm invincible like most teens.

Weird things started happening. I rarely ever got colds or flu's. I noticed I would get these short waves of nausea. They weren't severe, and wouldn't come often, but were strange. I had noticed that my glands had been swollen for about two weeks. Then an itchy rash appeared. It wasn't exactly a bull's eye, so Lyme disease didn't even enter my mind. I was sitting at my computer and noticed that the tops of my feet were itching. They looked a little red. I thought nothing of it.

Meanwhile, I was taking care of my neighbor's garden located just behind a nature preserve. There was a  'heat wave' so I headed over there every day in sandals and a bathing suit. The rash persisted on and off for about a week. Some mornings I would wake up and my toes would be swollen and itchy, kind of like hives. Finally it turned into a blotchy circular rash on the back of my calf, but it was still migrating all over my body. Then my knees hurt so much that I couldn't swim at my 'swim meet'. This alarmed me and my mother so we made a doctor's appointment. My pediatrician immediately tested for Mono and Lyme disease and started me on four weeks of doxycycline. A week later, both of the tests came back positive.

I followed the regimen my doctor gave to me. I took my doxycyline, the acidophilus, and went to sleep at 11:00 p.m. every night for a month. I felt really pretty good. I even went on my school fall camping trip to the woods in New Jersey, and to this day I wonder if I got reinfected there. About a day after I got off the medicine I woke up in the middle of the night with severe nausea and stomach pain. We thought it was from the medicine, so my doctor gave me Zantac. I still wasn't the same.

I tried to resume my winter swimming program, but I just didn't have enough energy to do it well. Then one afternoon I felt like I had the flu. I took some Tylenol Cold and Flu medicine hoping it would make me feel better. Instead, I developed some irregular heart beats and chest discomfort. My mom called my pediatrician who said I should be taken to the emergency room. By the time I got there my heart had pretty much resumed a normal beat.

We called and made an appointment with a cardiologist to get some tests done. He said I have mitral valve prolapse and a slight arrhythmia and it was disturbed by the stimulants in the Tylenol Cold and Flu medicine.

A couple of weeks went by and I began having visual disturbances. It is so hard to explain exactly what they were. I guess the only way I can explain it is, shadows against light are really intense, and I have increased floaters.

We were getting fed up, so we called around and found a name of a good Lyme disease specialist in the state of New York. He told us that he didn't want to treat me yet. He would just watch my symptoms because they weren't too severe. I was still going to school and still swimming. Our family planned our annual trip to Florida and that is where my nightmare started.

On Christmas Eve, in church, I became really nauseous. My dad took me home. I brushed it off because the next day we would be getting on a plane to go to Florida. I was nauseated the whole way there. In Florida I got a stiff neck, achy joints, sore muscles, fatigue, headaches, photophobia, heart palpitations, dizziness, fogginess, swollen glands in my arm pits and upper and lower GI problems. I felt awful and so alone.

As soon as we got home on New Year's Day, 1996, my mom called the doctor. He prescribed two grams of oral amoxycillin for three weeks to see if I could tolerate high doses of medication. I felt a little better.

I.V. was now in the picture, so we headed to the doctor's office to get certified for home I.V. treatment and the catheter put in my arm. One gram of Rocephin twice a day for the next six weeks would be my daily routine. I definitely had more energy and I was still going to school, but not all my symptoms had cleared up. At the end of the six weeks, my doctor opted for four weeks of Claforan I.V. That was the 'killer'. I could only tolerate it for ten days. From that day on I was extremely ill for about three weeks. I couldn't go to school, I couldn't eat, or barely walk up the stairs. My nausea and flu-like symptoms continued, but I managed to make it to school on a part-time basis.

After the I.V., I noticed that some of my symptoms went away, but I had acquired some other symptoms. I noticed I had severe PMS and menstrual periods, severe motion sickness, and night sweats. My doctor told me that sometimes when people go off I.V., their immune system gets so worked up it crashes and causes them to become very sick. Among all the confusion, my mom started to get sick. She began to get dizziness, nausea, fogginess, numbness, tingling and joint pain. The past two years she had some arthritis pain, but had it checked out and it didn't seem serious. We put 'two and two' together and realized she had Lyme disease. She has been on Zithromax on and off ever since then and now resumes a close to normal life.

It was now June of 1996, and our family was getting ready to move to Ann Arbor, Michigan. I had to leave my Lyme disease specialist, my support group, and my senior year at my high school. Driving out here would be my next negative experience. My mom and I had made it to New Jersey, but had to terminate the trip due to my motion sickness and my feeling just sick, period. I took some meclizine and made it back to New York, where we saw a gastroenterologist. He prescribed prevacid, which enabled me to choke down some chicken soup and bread. This gave me enough energy to fly to Ann Arbor. From then until now, it has just been a blur of doctors and diagnoses.

I have tested negative for both Lyme disease tests, and even the new one in Boston. I have been laughed at by doctors, sent to psychiatrists, diagnosed with Chronic Fatigue Syndrome, and put on anti-depressants.

I found a doctor in Michigan who agreed to treat me and my mom. For a few months I was scared to go on antibiotics, because in the past they had always made me sicker. Finally, a couple months ago, I agreed to go on Minocin, since it was the only thing I was certain I could tolerate (I have severe gastritis and nausea all the time). I didn't really feel much different on it, though I did notice that I had more energy. Luckily, during the fourth week of the antibiotic, I had a herxheimer reaction that lasted close to two weeks. I am now off the antibiotic and still not in school. I am too nauseous to tolerate the drive to school and to sit in the classroom with the fluorescent lights. I notice again I am having a harder time eating, my motion sickness is worse than ever, and I've developed anxiety and panic attacks.

I still feel better than I was before the IV. For now, I depend on my vitamins, mild exercise and stomach medicines to keep me going. Every day, I search and search for some new idea or treatment that will get me healthy

For more information on Lyme disease see: Lots Of Links On Lyme Disease

Last updated on 29 December 2000 by
Art Doherty
Lompoc, California
doherty@utech.net

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