Associate Professor at Berklee College of Music, Boston
Read our investigation here
I found a tick attached to my ankle after visiting the well-known garden complex Parc Guell and attending a music festival in Barcelona, Spain in June 2013. The engorged tick fell off in the shower and two days later I noticed a bulls-eye rash on my thigh.
It faded after a week or two. I didn’t know the significance of the rash, and quickly forgot about it.
Several weeks later, in July, I became very ill and returned to the US from my expat work assignment in Spain. Doctors could not diagnose my illness. I was tested for Lyme twice using the standard Centers for Disease Control-approved procedure, with negative results.
After a few weeks of terrible illness – including fatigue that kept me in bed for 18 to 20 hours a day, vertigo, arthritis, cognitive problems, a never-ending cough, and severe nausea – a friend told me that I really seemed to have symptoms of Lyme.
“No," I said. "I’ve already tested negative for that.”
But with research, I learned that the rash I'd had was a Lyme symptom and then I remembered the tick bite. Further investigation showed that the borrelia strains – bacteria species that cause Lyme – in Europe are different from those in the U.S. An infectious disease physician eventually suggested I return to Europe for testing, because "I became ill in Europe". And there are different strains of Lyme there.
I was then tested using the lymphocyte transformation test (LTT) in Germany, which confirmed I had Lyme (or borreliosis as the Germans call it). The German doctor wanted to treat me with 28 days of Rocephin. (an antibiotic typically used for Lyme and recommended by the CDC) but I chose to go home instead, thinking that now, with a diagnosis, treatment would be no problem. I had no idea of the struggles I would endure.
I saw multiple doctors in Boston at major hospital centers who were dismissive and not willing to accept the German test or prescribed treatment, and insisted upon running further U.S. tests – which don't pick up European strains very well. Doctors at the infectious disease clinic at Vanderbilt University in Nashville told me that they wouldn’t even schedule an appointment unless Lyme was confirmed through the CDC test, even though on the CDC website they note that foreign borrelia will not show up on most tests in the U.S.
Meanwhile, the lack of treatment meant the disease was becoming rampant in my body. Desperate to find someone who could help, I turned from mainstream medicine to a naturopath medical doctor whose treatment involved IV silver hydrosol. Although the treatment worked to some degree, it eventually caused kidney and liver failure and landed me in intensive care for three days at Christmas.
Finally, in January, I found a caring physician willing to accept the German test and patient history, and I was finally treated with IV Rocephin, and the symptoms resolved rather quickly. However, due to a treatment course that was too short, I relapsed and began to lose feeling in my arms, as well as to develop anisocoria (change in eye pupil size), a total loss of taste, and crawling sensations on my skin. More trips to notable infectious disease clinics resulted in the familiar, “we can’t find anything wrong with you,” despite my previous test results and patient history.
In April, under the care of a Lyme medical doctor, I began again long-term treatment with IV Rocephin. As of today, I am much better, but not quite well.
In the end, if there was better testing for Lyme, I would have been diagnosed and treated more quickly, and could have avoided six months away from work, and my insurance company could have avoided more than $100,000 in bloodwork, imaging, and other procedures looking for a diagnosis.