Lyme Life to Lime Light Chapter 1 - Passion and Pain
"I never would have imagined the crazy series of events that would follow a few small bug bites while having the time of my life..."
If you had asked anyone to give a brief description of who Sean Gurnsey was, you would undoubtedly get a hint that paintball was my sport of choice. I first played the game as a teenager back in the early 90's. The adrenaline of the fast paced games coupled with an amazing camaraderie that occurred off field had me immediately addicted. I became a regular at the fields in my area, and even thought about starting up my own business and running a field myself. In 2009 I went with a couple friends to Oklahoma D-Day, a huge game, with over 3000 players across 800 acres of terrain. It had been a long time dream to get down to this game that I had heard so much about. For me, it was a 'paintball pilgrimage'.
Playing with people from all over the world was an amazing experience, and I looked forward to the event every year.
What I thought was a once in a life time trip, became the big event I looked forward to every year. When I was there in 2012 however, I brought back a little more than the expected welts and ear to ear grin that usually accompanied me home. When I jumped in the shower after the grueling thirty-odd hour road trip home, I found three little ticks embedded in my skin. I grew up in Saskatchewan, and ticks were a regular find, although the ticks I had picked up this time were very small, only about the size of a sesame seed or a freckle. I knew that ticks could carry lyme, but was sure it was pretty rare and even then, I was feeling pretty invincible. I even developed a rash that looked like a pile of bug bites around the area I had pulled the ticks from, but I didn't suspect lyme disease because it never formed a bullseye. The itchy red bumps disappeared at the same pace as one would expect mosquito bites to fade and the thought of any related issues dissolved as well.
A few months later, I started experiencing some fatigue and weakness. It was the kind of thing that makes you question your previous nights sleep, your diet, and whether or not you drank enough coffee, or not enough water. But after a few days, the symptoms increased, making me dizzy, confused and convinced that I had some sort of flu coming on. The spiral continued and when I began to have symptoms that were reminiscent of a stroke we were keen to have some answers from doctors.
The Symptoms List is huge! Lyme is known as a mimic because it can look like so many other diseases and issues
Trip after Trip to the doctors office, and test after test in the labs, we kept coming up short. CT's, MRI's, ECG's, EKG's, Stress Tests, Copious Blood Work, Monitors, Scans, nothing could come up with anything suspicious. Then one of my friends that I had traveled to Oklahoma with, asked if we had looked at Lyme Disease and reminded me of the ticks that I had brought back from our trip. It was worth a shot, but the blood work came back negative.
Then, as suddenly as the symptoms came on, they disappeared almost completely. I was left with a slight and cold tingle that would run across my face from time to time. My bewildered doctors suggested that the tingling was most likely remnants of a vicious and neurologically affective virus that they had not been able to detect, and it would most definitely disappear once my nervous system recovered. As silly as it sounds to me now, I believed the prognosis at the time. The tingling did subside, but never quite disappeared. Almost exactly a year later, it signaled a return of the symptoms when it became more frequent, intense, and intolerable.
Round two of symptoms and doctors visits was more severe. We had moved to Moose Jaw, Saskatchewan from Caroline Alberta by this point, so in a lot of ways we were starting from scratch with much of the diagnostic process. The same scans and tests were repeated, and for a time, it looked like a brain tumor could be the culprit but a careful inspection from a neurosurgeon confirmed that nothing up stairs was out of order. Again, doctors had come up empty handed.
It was at this point, we started to become aware that the medical community we had placed so much trust in, did not have the answers we needed. We started looking out of province, and out of country for help as my "bad days" became worse and more frequent. That's when we found out that there was a gaping hole in our system for Lyme disease detection and treatment. There are actually a huge variety of tests out there for Lyme disease, and Saskatchewan and Alberta only used one, and it wasn't necessarily that effective. Conspiracy abounds when you start to ask questions about why our systems hasn't adopted a more comprehensive testing system, but it was enough for us to know we needed to dig a little harder.
It was like following a trail of bread crumbs. Every time we were discouraged, some seemingly random connection would encourage us to look at Lyme disease. While sitting in the waiting room to hear an infectious disease doctor write me off as delusional, another doctor walking past, asked me what my symptoms were. In the moments we chatted, I discovered, that he, himself had struggled with Lupus, one of the things that Lyme can be mistaken for. I hadn't told him much about my own journey, or the ticks I had pulled off my body that predated all of this, but he still told me to look into Lyme disease as a possibility.
Again, after being told by a doctor that Lyme didn't exist in Canada, and that the reason I was in a wheelchair was likely due to "bad posture" (no really, that's what they said!) I met another random person in line at a sandwich counter who told me that I should get a second opinion because his "Father struggled with Lyme for 10 years before the figured it out".
Then, I was approached by a doctor who knew me and a little bit of my story. He wanted to rule out Lyme disease once and for all, and was willing to go the distance to get me a diagnosis and the help I needed. His tenacity and commitment to my well being was phenomenal. "I don't know much about Lyme disease to be honest," he said "they kinda skipped over it in Med school, because they say it is so rare!"
We sent blood to a lab in California called IGENEX. They were well known for their Lyme testing but we would have to pay out of pocket because it would not be covered by our healthcare. With the extremely degraded state my health was in, it was an easy decision to make. When the results came back, I had them read by several doctors, and even my aunt who was a biochemist at the university and had some experience with tests of that sort. That began a debate on whether or not the tests could be trusted, and whether or not it verified I had the disease or not. Out of six, my aunt, three doctors in town, an infectious disease doctor, and a retired doctor who wrote the book on Lyme disease from British Columbia, It was 4-2 in favor of the results being positive for Lyme.
Finally... A positive result. Now what? The tricky part was over, or so we thought. But getting a diagnosis was only just the beginning of the battle, and it had taken 4 years to get that far! Treatment was an entirely new ball game.