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Diana's Story

Hi, the following is an account of some of the problems which we have faced with Lyme disease. First, my daughter who is now almost 8, had Lyme a few years ago. In about May, I saw a very small bull'seye on her thigh. She had a problem with her ears hurting and the pediatrician said I was being "paranoid" and that it was just a spider bite. I work with animals for a living and bring my daughter with me. We are outside a lot. I asked the doctor to test and treat her, and she refused; however, she did give her Amoxicillin for the earaches.

She started having ringing in the ears. Another week of med's. She developed what the doctor called "perpura" and what I call HERX!!!!! They didn't agree and took her off the med's -- She got worse and started showing weird symptoms. Another rash. Dyslexia. Agoraphobia. Very weird thoughts. Depressed and couldn't eat without throwing up 'till she was in bed a lot. This was a girl who was always "up" and filled with joy. All summer the doctor kept saying it was different things; even tested her for leukemia because of the "perpura."

Finally she tested her for a number of things, one of which was Lyme (she didnt tell me she was testing her for it). Christmas Eve she called and said your daughter has Lyme (pos. blood test, and needed to go on med's immediately -- she DID call me on Christmas Eve). She said the Physician's Desk Reference Guide said 21 days of med's was all that was needed. It got worse. I begged for more. I gave her books on Lyme, called other doctors (had NO insurance at the time -- she finally gave me enough medication for another month).

My daughter improved. A few months later, she relapsed and the doctor told me to come in and GAVE me the med's this time. I think she felt bad that she didn't believe me that whole LONG time (she never apologized though). My daughter suffers from things now that I'm not sure are residual effects of the Lyme or not. Anytime she gets excited (good or bad) she runs for the bathroom and throws up. She also cannot go anywhere without me -- she literally panicks. I can see fear in her eyes. She used to go to her friend's to play,now since the Lyme she won't go unless I go too (and stay in the same room with her). The Lyme really hit her stomach and I think it is now her weak point.

Now, I am going through the same thing. Guess where I was this past Christmas Eve? At the lab (right before it closed ) having bloodwork taken. I have had problems for years also with joint pain. I could only afford the local clinic and they tested via Western blot and ELISA, which both came back negative. They said my knee problem was caused by a condition known as condramalaysia, (sp) and that it would only get worse. It got better and moved to my other knee. Then came other pains in muscles etc.(could barely raise my arms up). More problems. More local tests. More negative results.

We finally now have insurance, so I went to a Lyme specialist who did the LUAT and it came back positive. The doctor started treating me a a few months ago, but my insurer is giving me a hard time. With the first med's, they only allowed 6 pills at a time. Every 3 days I had to pay my co-pay and get the 6 pills. I had such a great first week on that medication that the doctor wanted to continue it, but the insurance compnay said no. So the doctor switched me to a different medication. They were also fighting me on the tests. I have spent so much time on the phone with the inurance company and doctors that it's worn me down. I have since had to quit where I worked.

Now, my father has multiple classic symptoms. Classic bull'seye (they called it ringworm), partial Bell's Palsy,and he falls asleep as I speak to him (my mom is worried about him falling asleep at the wheel). He has weeping eyes, joint pain -- oh the list goes on..... The VA hospital tests with local labs and he tested positive for Lyme. I have many friends with Lyme in this area. I even know many animals with Lyme(dogs and horses), and I mean MANY !!!!

If I can be of any help, please let me know. People are SO ignorant about this disease that it is extremely frustrating. Everyone seems to have difficulties with tests, diagnosis, treatments and insurance companies. WHY??????? I feel like we are sitting ducks in all of this. I am upset for EVERYTHING my daughter had to go through. I trusted my doctor, yet found that I had to be my daughter's advocate, and do the research that the doctors should have been trained for. Had I not, where would we both be? Please feel free to email me.


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