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Cindy's Story

My name is Cindy Alfredo, and I have had Lyme disease for more than 1/2 of my life. My childhood journals tell story after story of being frequently sick as early as 1974. In January 1980, I was admitted to the hospital with swollen toes and knees, which progressed to every joint. Around the same time, I also began having heart skips. I spent my 20's going to different doctors, never to be diagnosed. I was told I had a collagen vascular disease, maybe lupus. I was put on anti-inflammatory med's and antidepressents.

I thought it was my fault for whining too much, or for not trying hard enough. I had two difficult pregnancies after one miscarriage, and almost lost my babies. In 1996, I underwent spinal surgery for severe spinal stenosis in which my spinal cord was being squeezed. I flared, and have never been the same since. I was finally diagnosed with lyme disease in November of 1997 and have been on antibiotics since. This has been the rollercoaster of my life.

I have been on and off treatment consisting of oral and IV antibiotics. I have had numerous surgeries and tests performed. I still have doctors telling me that I don't have stop "dwelling on my problems," even after testing "CDC positive." I have a worsening brain SPECT scan, and Lyme has literally invaded every system of my body. I am a registered Medical Assistant. I had managed an obstetrician's office for four years; now I can't read a novel or balance my checkbook. I have applied for Social Security benefits, only to be denied. Another fight for me.

After having several problems with mid or long line IV's, my doctor sent me to a surgeon for an implanted central line, via port-a-cath. Little did I know that my insurance would only give me 4 weeks more IV. It is hard enough being sick with an invisible illness, but to have to fight your insurance company for treatment is horrendous. I was lucky, thanks to the help of Tom Ryan, Assistant Attorney General here in Connecticut. My insurance company agreed to treat my Lyme for as long as my doctor deems neccessary. I still have mostly bad days, but am looking forward to having more good days than bad.

Meanwhile, I always suspected that my children had something going on in their little bodies. Sure enough, in March 1998, they were diagnosed with Lyme disease and Babesiosis. The wonderful and caring Dr. Jones, has been treating them since with oral antibiotics. They were improving until Christmas time. They will be having a brain SPECT scan soon to determine if they have hypoperfusion, like myself. This disease affects the whole entire family. My husband, who is well, has to work hard at his job and then come home to help me. His life has been forever changed. I depend on him so much. Because of our illness, he is unable to lead a normal life.

We can only live our lives one day at a time. I have become a stronger person as a result of fighting for myself and my children. But it is so unfair that people so sick, are being denied treatment. The world needs to know how bad Lyme can be if left untreated. This disease lives in our backyards, and still people refuse to acknowledge this. I vow to do everything within my power to help people learn about Lyme Disease.

Cindy Alfredo

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