Mike's Story

My son Mike was diagnosed with Lyme in May of '98, but displayed many symptoms months before. Mike is an epileptic and has attention deficit disorder. He had been running low grade fevers for several months --this was accompanied by severe joint pain of his knees and elbows, and there was also a change in seizure patterns. They were more frequent and severe in nature.

My mom was diagnosed with Lyme in August of 1998. She had two mini strokes. She has severe fibromyalgia and now stutters since the last mini stroke. We all live in the same house, and we have the woods behind us. Even after explaining all of this to the peditrician, she tested him for all but Lyme and said that he has had unexplained fevers. Then I called Mike's neurologist, and he told me to get a Lyme titer and a rheumatoid factor done, and bingo 3 out of 5 bands postive for Lyme.

Mike was treated with oral antibiotics until he was down to one band. These strong antibiotics do a number on the stomach of a 50 pound kid. The antibiotics seemed to have worked but in September, the symptoms began to reappear. The infectious disease specialist told us that Mike was reinfected. I believe that if Mike was on IV antibiotics, the situation he lives with today would be very different.

Mike was in so much pain that he was homeschooled for the month of May. To watch him go through the pain that he has endured has seemed endless. He has frequent and severe migraines and has made a major decline academicaly. His fine motor skills are terrible, especially when he prints. There are days where he doesn't get out of bed very much.

I took him to Dr. Sigal at Robert Wood Johnson Hospital. He said that Mike's IGGs aren't high enough for late stage Lyme. He thinks that the regression is a degenerative neurological disorder but didn't name any syndromes etc. He suggested a spinal tap to be done by Mike's neurologist. The doctor has been waiting since February, 12th for the report, and I think it finally came in on Friday. He is going to be self contained in school as of September, because of his regression. His special education teacher took out all of his past books and work from first and second grade, and the decline is unbelievable.

His OCD has worsened since being weaned from the Luvox -- he is a little boy who we just don't know anymore. Within one year he went from a happy -go-lucky kid, who was determined to succeed in school, to a child who no longer wants to do much, and is depressed. We are taking Mike to all of the doctors needed to help ease his symptoms. BASEBALL AND SOCCER START SOON SO HE IS HAPPY ABOUT THAT -- WITH SPORTS COMES THE PAIN. If you have any questions please E-Mail me. I hope our story is helpful.

Jen Bernstein, Mother of 9 1/2 year old Mike

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