Sarah O's Story
LYME DISEASE HISTORY
During a long-distance bike ride taken on October 18, 1996, I experienced the first of a number of strange, seemingly unrelated symptoms. I will never forget the date. On that particular day I was leveled by severe chest pain and shortness of breath.
Over the ensuing weeks and months other signs of illness manifested, including: a persistent cough, hoarseness, vertigo, fainting, nausea, vomiting, diarrhea, nerve problems (including spasms of my left fingers, toes, and sole of foot, numbness, weakness, and tingling at my left arm and leg, and intense bilateral tremor), joint pain at my left shoulder, fingers, and hip, heart palpitations that were incurred or exacerbated by exercise, a paralyzing and relentless fatigue, muscle twitching and spasm, confusion, loss of short-term memory, disorientation, and occasional stuttering.
Because my symptoms seemed so disparate to me and because they often appeared just a few at a time I did not think that they may somehow be related. Instead I just dealt with or ignored (since I had no medical insurance at the time) each one as it occurred. Over time, however, I realized that my problems were not going to simply disappear so I began to work with a number of doctors to find the cause of my illness.
Eighteen months after seriously seeking a cause of my problems one particular doctor, who had worked at Massachusetts General Hospital in the past, stated that he thought the picture I presented was typical of Lyme Disease.
While the disease is not endemic in the state of Colorado (where I've lived since 1988) it is in my home state of Massachusetts, which I had visited in the summer of 1994. On that visit I spent a week on a heavily wooded island and I was outside for most of those days. I could have easily encountered a tick sometime during that week.
In February 1998, on the day after the visit in which Lyme Disease was said to be a strong possibility, I went to my local library and checked out the most recently published book on Lyme Disease that I could find: Everything You Need To Know About Lyme Disease And Other Tick-Borne Disorders, by Karen Vanderhoof-Forschner. The book described a typical patient's progression through the course of the illness and it was nearly identical to mine - except that I had not experienced the "recovery" part yet.
I was tremendously relieved to know that I wasn't alone in experiencing so many different types of symptoms at one time, that my problems could actually be attributed to a medical condition, and that people with this problem had been successfully treated with antibiotics.
After turning to the resources listed in the back of the book I contacted the Lyme Disease Foundation and obtained a list of the doctors in Colorado who are literate in the treatment of Lyme Disease; there was only one name on the list.
I became a patient of that doctor two months later and a diagnosis of Lyme Disease was made. The diagnosis of Lyme Disease is a difficult one to make but it was made in my case because of my history of exposure in Massachusetts, the clinical picture I presented, the fact that I responded well to antibiotics, the results of a western blot performed by a reputable laboratory, and the fact that other illnesses had been eliminated as the cause of my problems.
In April 1998, I began a course of antibiotics that included, at different times, doxycycline, amoxicillin, intravenous Rocephin, biaxin, and metronidazole. My doctors and I noticed that my improvement had "plateaued" in the fall of 1999, so I stopped taking antibiotics altogether in January 2000. Since then I have remained as well without the antibiotics as I was at the time I quit taking them. I'm quite happy with that.
Today I function as about 90% of my former self and some days are even better than that. I still have some residual neurological problems and joint pain; perhaps those are the effects of the damage that was done when I had an active infection. Those problems, though, are not nearly as intense as they were in the past and they have not prevented me from maintaining my job and resuming a healthy exercise routine that includes regular long-distance walks and exercise with free weights.
After my long struggle I have beaten this illness and resumed a very active and fun life. There is definitely hope.
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