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 Post subject: Pam's Story
PostPosted: Mon Feb 18, 2008 11:10 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
Posts: 2809
Location: USA
It all started 12 years ago. I was taking fertility drugs and noticed swollen lymph glands. Out of fear of cancer, I went to my GP. She noted a large red "spider bite" on my scalp and numerous swollen glands. I had my son, a miracle baby and he was sick from day one. Slept 18 hours a day, rashes, fevers, never cried to eat. Numerous doctors and specialists later, I was told that we had feeding issues and a power struggle. He was an infant and I was an RN who had worked with newborns. I knew how to hold a bottle. I had severe neck pain, bouts of very high blood pressure 160/110, pulses up to 128. I was an athlete, very tall and thin. I focused on our little boy who grew thinner, vomited, slept constantly. I took pictures of the rashes and rushed to the doctor to document the fevers, as high as 104. No diagnosis, more specialists as a prominent childrens hospital. He had a feeding tube surgically placed in his stomach at one year and at least I could feed him. Years passes, he would turn pale and bluish, so would my feet, my hands would turn beet red and burn, stabbing pains woke me at night...when I could sleep. I would wake every few hours. We both saw doctors, no answers. I was diagnosed with fibromyalgia, rheumatoid arthritis then lupus most likely then probable scleroderma, the fatal kind because I bombed vascular testing at Mayo Clinic and had raynauds disease. My jaw ached, we both had chills, nausea, diarrhea etc. NEVER GIVE UP. I quit taking him to doctors because they suggested that I might have an illness where moms fake that their child is sick. I was terrified and furious. Eight years later, I kept researching, praying and reading and had a lyme test done at Bowen Institute at my request. I had lyme and babesia, a tick borne protozoan infection. A real diagnosis at last. We sought lyme literate doctors out of state and slowly began normal lives. We have good days and bad days but have come a long way. We have vowed to do everything in our power to help educate others on this devastating and mysterious illness. Every doctor we saw, over 42, have been told what happened and the hospital that left us out in the cold graciously held a lyme conference hosted by several prominent ILADS physicians. Over 168 people attended from all over the country. I have a large network in Florida and receive calls constantly from scared people seeking help. We have assisted with 20 plus mystery illnesses being diagnosed as lyme disease. The power of prayer, persistence and education are amazing. Be well. Pam, RN FL

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