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Jan's Story

I am a 37 year old woman living with late stage Lyme disease, since 1989. I had a huge bull's-eye rash, but in 1989 did not know this was a tick bite. I was not diagnosed until the end of 1990. The last 10 years are filled with both joint and neurological involvement. My most bothersome problems include severe vertigo, blurry vision, nystagmus and a rare form called oscillopsia, partial paralysis of the vestibular nerve to my left ear, atrophy of my optic nerve discs (both eyes), joint swelling and pain, headaches and body aches, fevers, fatigue, tremors, facial tics, memory problems, etc., etc.

I was also diagnosed to be positive for Babesiosis. My entire life, those who know and love me have been profoundly changed by this disease. I did not have children. I have lost jobs, money, career, and educational opportunities. I have put up with doctors who would yell at me, laugh at me, and people who do not understand a chronic illness.

The only positive result of this experience is my increased love and appreciation for all the small things in life, the importance of love and friendship in my life, and to have empathy for those who are worse off than me. I have been on and off antibiotics for a total of 7 years, out of the 10 years I have been sick. I have spoken to hundreds of people with the disease over the past 10 years. I hope someday to be completely cured!!! I will always hope!!


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