Cindy Frazier
Tuolumne County, California

Total cost: $8,3000
Number of family members with LD: 4
Lost work/school: 1.5 years of work
Number of years sick: 2

I was an extremely healthy 38 year old woman until May 1994. Several months prior to that I was bit by a small red tick in my yard in Sonora, CA. I didn't think of Lyme disease because like all the other places, 'we didn't have it here'. My illness began with numbness and an array of other sensory disturbances. The numbness spread from my foot to most of my body including my face. Lyme ELISA titers were negative so, at this point, it was ruled out. I was sent to a neurologist who did an MRI, ANA, and a lumbar puncture. The MRI was abnormal with diffuse periventricular white matter, my ANA was slightly positive for Lupus, and my spinal was positive for oliogoclonal banding and an elevated Igg synthesis rate suggestive of multiple sclerosis. I was again told I did not have Lyme disease because the spinal tap would have been positive. My health continued to deteriorate. I cried uncontrollably for months. It was very hard on my entire family. I became nearly bed ridden with fatigue, it was difficult to walk, and I was unable to work. I began doing extensive research into the field of Lyme disease and learned that all of my symptoms and lab results could be consistent with Neurologic Lyme. My family physician supported me in my belief, despite the fact that three neurologists felt it was probably MS. At this time I was showing reactivity to specific Lyme protein bands.

Five months into my illness I was started on IV rocephin at 2 gr. a day. After the initial worsening of the symptoms, I slowly began to improve. I remained on antibiotics (1st amoxicillin, then Azithromycin) for a total of two years and three months. Several times when I seemed to be symptom free I stopped the medication but within days my symptoms returned. Therefore I elected to stay on them many months after my symptoms resolved. I was seen by Dr. ***** in December of 1996 at UCSF. It was mutually agreed that I would stop the antibiotics to see if there was a reoccurrence of symptoms. I have remained symptom free for nearly two years now. It was a very devastating and hopeless feeling during my Lyme battle. I not only was fighting the disease but fighting for the doctors to believe that we indeed did have this disease in our county. One good thing did come out of all I had to go through though. If I hadn't studied the disease parameters in detail, I would never have realized that I was not the only family member suffering from Lyme disease. All three of my children had it. One of my daughters, at the time age 10 had had it for six years undiagnosed. We spent thousands of dollars on specialists, medical tests, and abdominal exploratory surgery on her before she was diagnosed in the summer of 1995 when I insisted she be tested. Her Lyme ELISA was positive at 1.4, the cutoff being 1.0. If more physicians in this country and, in particular, this state and county would try to learn more about this disease and how it can manifest itself, they could save countless patients a whole lot of money and needless suffering. Many physicians only seem to see what they already know. It just isn't taken seriously here. I know we are not the only family in this county to have had Lyme disease, but we are probably the only ones that really looked for it.

Every member in our family presented with a different set of symptoms, therefore how could it be Lyme?!