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Alice L's Story

My daughter Alice is now 19 years old. She was finally diagnosed with Lyme Disease almost 3 years ago. She was a spectacular student and was going to graduate from high school a year early, and hoped to go to college to study one of the many things that interested her so much -- thinking of being a surgeon someday.

But for several years she had vague complaints which were all dismissed by our doctors, and then in tenth grade she became so dizzy that she was falling at school and having a lot of trouble concentrating. We went from doctor to doctor to doctor. She had four Lyme titers and so many other tests, but the results were always negative. Seventeen doctors told us that her problem was not physical and that I should make an appointment with a psychiatrist.

I knew my daughter and was sure that the only thing bothering her was that the doctors did not believe that anything was wrong. In April of that year she became unable to stand, sit, read, or even watch television. I had to be with her 24 hours every day. After a while she was almost unable to speak.

I am lucky that she is small and light because I had to carry her. We were also lucky because we heard of another doctor who had helped someone with similar symptoms.We went to this Lyme literate doctor who took one look at Alice and said that he would bet his license that she had Lyme.

He gave her a Lyme urine antigen test and was not surprised by the results. Alice also had a SPECT Scan to back up the diagnosis. We were thrilled to know what the problem was, but we had no idea how long or how hard the treatment would be.

Alice had almost three years of antibiotics [most of that time on IV]. She can now walk and usually speak. She can read again and is starting to play musical instruments again, but she is very aware that she is not where she was and not close to where she would have been without Lyme.

During the time she was very ill, I was tested [by direct blood culture] and was found to have it too,though not nearly as bad. The years have passed; Alice was unable to go to school beyond tenth grade. Her friends moved on to other friends and driver's licenses and college.

She still has to spend most of her time with me, because we don't know from one minute to the next if she will need help getting out of a chair,support while walking, help to the toilet,etc. We have met others who have gone through Hell with this too. I am too tired to write more now -- you surely know how it is.

Susan Levitt (Alice's mom)

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