The data can answer key questions: What treatments are others following? Does pulse dosing help? At what intervals? Are we using the wrong antimicrobials? In the wrong combinations? Is the damage permanent? How can we find out? What do those who don’t recover have in common?įinding those who were sick, not treated early, but are now healthy and fully recovered should also be a priority. We can find new solutions-new drugs, new understanding and new approaches.
Patients now have the opportunity to learn from the clinical experience of others, to try what works and abandon what doesn’t work. While extremely helpful, the treatment was not completely curative. The out-of-state doctor did prescribe long-term antibiotics. While one antibiotic taken for about a month may cure Lyme disease if provided early, once months and years have gone by, the illness can become entrenched and there is no easy cure. Like others, I have learned the hard lessons taught by tick-borne illness. I found out later I had both anaplasmosis and Lyme disease. With an invisible illness, friends are often dubious or confused when someone “looks fine.”Ī doctor in another state (who, unfortunately, didn’t take insurance) finally confirmed a Lyme disease diagnosis and treated me. Understandably, my social life ground to a halt as I created a new existence focused on conserving energy and making it through the day. Because of a committed and capable staff, though, I was able to avoid selling or shutting down the business, but I considered both options seriously as my health spiraled downward. Finding words and organizing thoughts became impossible tasks at times. With the ever-increasing severity of my symptoms, I often had to put my head down on my desk. I was so ill, I doubted I would survive 2011.Īs a business owner, I needed to continue working both to keep my business going and to have enough income to seek medical help that was generally not covered by insurance. Even routine household chores like doing laundry or cooking became impossible. Overcome with indescribable fatigue, an inability to think clearly, tinnitus, muscle pain, chills, and vision problems, I was forced to abandon once-pleasant activities including ice skating and serving on the local library board. However, no one would prescribe the IV medication required. One or two doctors even diagnosed Lyme disease, and recommended immediate IV treatment. The new symptoms launched rounds of lab tests, an MRI, CT scan and almost a dozen doctor visits over the next two years. Yet, my family doctor was convinced it couldn’t be Lyme disease because I had been treated with 10 days of Ceftin.
A month or two later, I developed fatigue, vertigo and an episode of losing consciousness suddenly. I took the 10 days’ worth of Ceftin prescribed. By the time I got the appointment a target-shaped, red rash was clearly visible Having struggled through an earlier case of Lyme disease in 1987 and knowing how debilitating it could be, I removed the tick and made a doctor’s appointment right away.
Ironically, a few days after placing tick repellent in our woods, I saw an engorged tick embedded in my hip. This is the first of a series of guest blogs by people who have enrolled in MyLymeData.
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