Carly J. Frazier
Tuolumne County, California

Total cost: $4,800
Number of family members with LD: 4
Lost work/school: 1 month
Number of years sick: 6.5

My daughter's story is a bit unique because the disease did not present itself as a typical Lyme infection. Unfortunately, many of them don't and are therefore missed. For nearly two years the only presenting symptom was chronic hoarseness. It began approximately one year following the removal of an embedded nymphal tick from her ear at age four. The bite was sustained in Mono County while camping. She experienced severe episodes of chronic hoarseness followed by complete remissions. The initial attack was preceded by swollen lymph nodes, congestion, and cough. It lasted for many weeks. The episodes did not appear to be seasonal or allergic in nature. They did however progress in frequency, duration, and severity. She would loose her voice completely for weeks on end. The next symptoms to be noted were chest pains, frequently reoccurring swollen lymph nodes, and arthralgias involving her knees and ankles. This slow progression occurred over a three year period. Then in May of 1994, they exacerbated. She experienced severe acute and persistent abdominal pain. After four weeks of a low grade fever, abdominal pain, and nausea, a laparoscopy was done revealing swollen mesenteric lymph nodes surrounded by fluid. A diagnosis of mesenteric adentis was made. During this illness, she also experienced frequent chest pains, hoarseness with mucous, and loss of voice. After this, her health continued to worsen. While camping two months later, she experienced a severe case of respiratory dyspnea. She began gasping for air and started to panic. It was one thing after another with her health. 'Hot spots' on her arms and legs, malar rashes, acute localized muscle inflammation/severe pain, acute severe muscle cramps, and chronically swollen lymph nodes. Next she was sent to an orthopedist for the chronic knee and ankle pains. There she was diagnosed with Femoral Patella Disfunction syndrome, unknown etiology. By March of 1995, after again returning to her pediatrician for the hoarseness, he referred her to UC Davis Medical Clinic to the otolaryngology department. It had now been six years since the hoarseness began. It was there that I insisted on Lyme testing. During her illness I had been doing extensive research into Neurologic Lyme because I was suffering from it and had been for a year. The more I read, the more I was convinced Carly also had it. Her ELISA came back positive at 1.4, the cutoff being 1.0. A repeat showed a level of 1.23 at which point the cut off was 1.2. In addition to these two positive ELISAs, a Western blot, both IGG and IGM combined showed positive bands at 41, 53, and 66 kDa. Unfortunately, I was told that these tests showed she had been exposed in the past but wasn't having an active infection now.

What about the active symptoms? Just like me, I was going to have to fight to get my child's health back. Even her pediatrician told me that the test was probably wrong; that we didn't have it in our county. To lift his blinders, I sent him a copy of positive tick culturing done six miles from our house by Vector-Borne Disease Department of Health Services, Sacramento. Is it my job to educate physicians about a serious disease right here in my back yard? And is it my job to fight for my little girl's health when I know what's wrong with her and they don't?

We ended up taking her to Sonoma, 200 miles from our home in Sonora to get her treated by a doctor that was familiar with Lyme disease in children. She was on a lengthy course of antibiotics for 1.5 years. It took 10 weeks after starting the 500mg of Biaxin before we began to notice any improvement. It was a slow process but by the completion of antibiotics, she was symptom-free. She has been off them now for eight months. She is now a happy, healthy, normal and beautiful 13 year old.