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Rainy's Story

My daughter Rainy was originally diagnosed with Lyme disease when she was five and a half years old. That was in February of 1991. Her pediatrician was away, but she had been feeling so bad, that I brought her to a local walk-in-clinic that I had been to before. The doctor there is known for being a very good diagnostician. She had flu-like symptoms. He did a Lyme ELISA test that came back positive.

He immediately started her on amoxicillin for three weeks. After being on it for about a week I had called her pediatrician to inform him of what was going on. He sent us for another Lyme test and called me a couple of days later, and said stop the amoxicillin -- the test is negative. Well, not knowing then what myself and most doctors know now, a negative test is not uncommon while on antibiotics; so I stopped it. Rainy was always sick after that.

Always had stomach aches, headaches, sore throats so often, that by Feb. of 95 we insisted she have her tonsils out. It had gotten to be that whenever she went for a sleepover we were asked "Where's the pink medicine?" It seemed she was always on amoxicillin, but only for the recommended week to ten days. By August of '96 she was still complaining, only now the joint pain had gotten worse. We took her to a rheumotologist and an orthopedist. After checking everything else, the rheumotologist tested her for Lyme.

He called me a couple of days later and said the Western Blot was off the chart -- A 5.9. So back to the pediatrician (a new one by now) to get a prescription for three weeks of amoxicillin. That was in October of 96. There wasn't much improvement. Now the pediatrician recommended that I bring her to a pediatric Lyme specialist at Stony Brook Hospital. So off we went. Her major joint pain at that time was in her left wrist and her left knee. He said these are not joints affected by Lyme disease, and you don't get sore throats or stomach aches with Lyme disease; and the headaches could be anything.

But, he said, since she did test positive for Lyme he would treat her with doxycycline for three weeks. I asked when I should bring her back for a follow-up, and he said no need for that, she'll be fine. Well she was -- for a year and a half. Then it all started again. Rainy gradually got back the joint pain and swelling, the headaches, stiff neck, stomach aches, low temperature, and major fatigue. Through the summer she tried to play softball, her favorite sport, but had to sit out a lot toward the end of the season, due to pain and fatigue. I decided to switch her to a family practice I had been going to, so it took some time to get an appointment. In September she got pink eye, so I brought her in and explained about Lyme.

She was treated for pink eye and we made a follow up appointment for a complete check up, but couldn't get the appointment until early November. She got pink eye again in October. Her new doctor did another Lyme test which again came back positive. He put her on three weeks of amoxicillin; no change. He referred us to the Lyme center at Stony Brook, but we couldn't get an appointment there until January 25th. After talking with myself and my daughter for about an hour, her opinion was that Rainy wasn't suffering from Lyme disease, but from depression.

I couldn't believe my ears. She was asking if there were any family problems, etc. There were not. I've been happily married for 23 years, to a wonderful man. After some persistence she agreed to send me to a neurologist at Stony Brook Hospital (a friend of hers). She got a quick appointment for us. On February 1st Rainy had a spinal tap. Four weeks were wasted waiting for results only to have her also tell me that my daughter was depressed. I tried to explain to her that she's always laughing and being kooky at home(that is not a depressed child), but she stuck by her opinion.

I was outraged and let her know it. She did want to caution about doctors that overtreat Lyme disease. I figured that was better than a doctor who didn't treat it at all, so I persisted. I called the support group America on Lyme and asked for a referral for a Lyme literate doctor. After a couple of tries we found a wonderful doctor who is treating Rainy. She's not out of the woods yet, but at least he listens to her and doesn't make her feel as though she is going crazy.

She is currently still being treated, but I have great hopes with this new doctor. Thank you America on Lyme! P.S. She got pink eye again in March. (A symptom or not?)

Julie (Rainy's mom)

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