I contracted Lyme disease, while hiking through the Sixteen Mile Creek trails in Oakville, on July 2, 2011.
The bugs were bad and I remember being bitten, but thought nothing of it. After two days, a rash formed on my shin, small at first, but then growing a few days later. I went to a walk-in-clinic and was given cortisone. I returned two days later when the rash grew in size and was feverish. I was given an antibiotic cream and told to return if it worsened. It did.
Over the next seven weeks, I saw general practitioners, naturopaths, and went to the emergency room. I was given sundry medications and tested for multiple ailments. None of the tests would determine what I had. The medication did nothing. No one knew what was wrong with me. Three days after the symptoms of meningitis set-in, I saw a dermatologist. Because, at that point, my rash had dissipated and my symptoms were evolving, it was difficult to diagnosis me, clinically. However, I had pictures, which was the first of four important lessons that I learned.
Lesson #1: Take pictures and keep notes
With the pictures and my history of symptoms, the dermatologist suspected Lyme. I was sent for the Public Health test and given a two week script for doxycycline. The test returned positive. Seven weeks after the initial bite and 10 doctors later, I had a confirmed diagnosis. To be fair, one cannot begrudge medical practitioners who have never treated Lyme before. According to the Public Health professional that called me, I was the first case of Lyme in the Halton Region. Nationwide, I was one of the 266 reported cases that year. Last year, there was nearly 1,000.
Lesson #2: Do your own research
This is where it gets tricky. Internet medical searches probably cause more harm than good and I know nothing about medicine. But, being a doctoral student at the time, I knew how to navigate academic journals. In my search, I observed that, instead of two weeks, I should be taking doxycycline for at least eight. I took it for 10. Although I was late-stage acute at the time of diagnosis, I was told that I should recover. The several follow-up Public Health tests that I took suggested that I had.
Lesson #3: Don’t give up
I felt better, but never 100%. I experience fatigue, forgetfulness, and energy loss. I’m an energetic person, but I don’t have as much as I used to. I thought that it couldn’t be Lyme because all those tests returned negative. I pacified my symptoms as a sign of aging, but I’m still young. After living with the symptoms, I went through a battery of tests to isolate the problem. Nothing sinister emerged. But just to be sure, I was referred to a Lyme specialist that operates a private practice.
The specialist suggested two tests. One was the Public Health test that I have taken many times, which tests for one strand of Lyme. The other was a private test (not covered by OHIP) – that tests for 20 strands of Lyme. Consistent with the results of the previous tests, the Public Health test was negative. Meaning that, according to Public Health, I don’t have Lyme. However, the private test results showed that I have weak current cellular activity against Lyme (borrelia burgdorferi). After six years, I still have Lyme disease.
The reason that it still lingers is because, I was told that, doxycycline is insufficient to eradicate Lyme, on its own. Allegedly, both natural remedies and antibiotics are needed. Now, with a 6 – 12 month herbal remedy course coupled with months of antibiotic treatment ahead, the battle continues. This year, I estimate to pay $10,000 on private care.
Lesson #4: Seek private care
If I didn’t take the private test, I would have never known that I’m in the chronic Lyme (post-treatment) stage. I wish I would have known about this test six years ago. It probably would have saved me additional medical expenditures, distress, suffering, and a significant loss in productivity.
With the Public Health test, chronic sufferers like me can be misdiagnosed. Although options are available to treat Lyme, because they are not covered by OHIP or widespread, they are inaccessible to many. From my experiences, the Lyme care in Ontario seems insufficient. We all pay taxes and to incur additional medical expenditures to address deficiencies in our healthcare, which is supposed to be free, is unacceptable. Policy makers need to wake up because people are getting sick. Some are getting ticked off.
— Dr. Jeffrey Overall is not a medical practitioner or a Lyme disease specialist. He is not giving medical advice. He is an assistant professor at Nipissing University where he teaches entrepreneurship and strategy.