It started out as a joke between my boyfriend and me. “What if I have Lyme Disease?” I would kid. But the longer time went, the more the joke became a reality.
I remember the rash. I don’t remember the tick. I had been living in Calgary while studying hemp under a Fulbright Scholarship. Banff National Park was only an hour in a half away, so I found myself escaping to the mountains to soak up every bit of the atmosphere in my short 9-month trek there.
I spent my 2013 Thanksgiving weekend in the mountains enjoying the trails and the slopes. A few days after my return I noticed two rashes pop up on my body – a big red circular rash on my right forearm and a speckled red rash on my left thigh. Calgary was dry and I had sensitive skin anyway, so I just put some lotion on them and left them alone.
The rash on my leg cleared up rather quickly, so I associated it with a reaction to my leggings and thought nothing of it. The big circular rash lingered, but I previously had eczema in almost the exact location, so I tossed it out as anything too serious and rubbed steroid cream on it.
A few weeks later I flew home for Christmas, with the rash still on my arm. I remember visiting my friend Sarah, who also happens to be a nurse. I was playing with her dog, George, when she noticed the rash on my arm.
Her first reaction was, “Oh my god! Do you have ringworm?” I looked at her oddly, then looked at my arm. “No, it’s eczema,” I explained.
She looked at me peculiarly and said in her inquisitive tone, “Are you sure? When did you get it? Because George has ringworm.” I told her it was eczema and it had been there for about a month.
If there was a moment in my life I regret, it was not going to the doctor right then to see what the rash really was. Although, looking back at the journey since that day, I’m not sure if the Kentucky Doctors would have had the slightest clue to look for Lyme Disease…
After the holidays I flew back to Calgary until May when I started a long trek down to Brazil for the World Cup. Beyond the rash, I don’t recall any symptoms until I headed south.
I kept getting oddly cold feet in an equatorial atmosphere and experiencing a tingling sensation in my hands.
Since I just returned from a cold winter in Canada, I figured I had minor frost bite (which may still be the case since I snowboarded in -30 degree weather one day – but hey, it was only $2 :D) and with all the traveling, I ignored the tingling, blaming the sensation on dehydration.
After I returned from my adventure, I began to notice excruciating pain in my right knee.
Sometimes the pain would come after activity, but other times, it would spring up out of nowhere. I recall laying on the sofa with icepacks trying to figure out if it was an old soccer-related injury like a torn Meniscus or if soccer really had taken such a toll on my body that I already had horrible arthritis.
The pain became bad enough that I went to see an orthopedic surgeon who conducted some tests and took some X-rays. There didn’t seem to be a tear, just signs of arthritis. I knew soccer wasn’t the greatest on the knees, and my grandma had arthritis so I can’t say I was too surprised, but ate a ripe age of 26?? That seemed far too young, but the Doctor gave me a regiment to help stabilize the knee and sent me on my way.
After this Doctor visit, things began to get more and more strange. I recall a couple months later walking through the cleaning aisle of a Meijer, when I started to have a bout of sneezes.
I was so sensitive to the products in the aisle I had to leave the premises.
It may not sound weird to some, but I was normally a 2-sneeze kid, so a bout of sneezes was quite unusual, particularly given the unusual circumstances.
Next, I began to notice a high sensitivity to light. Suddenly the brightness on cell phones burned in my eyes. The blue radiated off friends’ faces as though they were at a rave with glow sticks.
Driving at night was becoming more difficult too. Headlights blared in the mirrors and bounced around the car making it difficult to focus. I popped in for an eye examination, but my vision proved to be perfect.
Meanwhile, the tingling in my hands and abnormally cold feet continued to come and go while the overly arthritic knee pain persisted.
In May 2015 I moved back to Lexington and soon experienced the Lexington allergies people complained about. Over my sister’s wedding weekend, I was having such a bad allergy attack I had to submit myself to the Kroger Clinic to get a steroid shot and pharma-grade allergy medication. But I thought to myself, “Dang! I’m no longer accustomed to Kentucky pollen!” And carried on with my life.
Around this time, I had heard of a family friend’s weird experience getting diagnosed with Lyme Disease. I listened to some of the symptoms, some of which were similar to mine, but he was having trouble breathing. I had fine respiratory function, so I thought, “eh I don’t think so.” However, it did start to make me reflect on my recent health problems and raise a brow to the thought that something bigger may be of concern.
As I continued to carry on with my life, the symptoms in the summer and fall of 2015 started to snowball.
I began noticing my energy levels were down and I just couldn’t get enough water. I started getting migraines for the first time ever. Then, abnormal ear pain that was considered inconclusive.
Later on, I had ENT give me some prescription migraine medicine and suggested I get allergy shots, but my brother had not had great experiences with allergy shots, so I passed.
The headaches proceeded and my body was becoming very sore, but I needed to get out of the house and back into nature, so a friend and I drove down to Red River Gorge for a hike.
I remember feeling tremendously out of breath, as though I hadn’t worked out in years. I thought, “my god Annie. Get your butt back to the gym.”
I felt like I was in the worst shape of my life, but during that hike, my family friend’s diagnosis flashed into my memory. I thought, “Umm… what if I really do have Lyme Disease?” On the way home, I dove into WebMD for a self-diagnosis.
About a week later I was writing a paper when I suddenly realized I had been mixing up “there” and “their” throughout the article, a mistake my English-teaching and grammatically-accurate mom would have never let me mix-up.
I thought it was fairly odd to suddenly be misspelling words I knew so well. I start to get a little panicked.
I didn’t have a primary care physician, so I had to track down one my insurance would cover, making appointments at the earliest dates possible. My mom’s doctor was available three-months out. This was unacceptable, but I took the appointment anyways while I kept navigating what to potentially do.
I started to write down all the weird health issues that had popped up over the last couple years to see if there were correlations with Lyme or other diseases.
I thought, “I couldn’t possibly have Lyme. I haven’t been to the Northeast in over five years and definitely hadn’t been in the Northeast wilderness.”
I tried the University of Kentucky Center for Infectious Disease. They refused to see me without a referral from my primary care physician. But I didn’t have one and couldn’t get in to see one!
I began thinking on it more. It couldn’t be Lyme. It was probably something I picked up traveling over the last few years. I had visited a lot of undeveloped countries after all. Maybe it was a parasite? I had cut my foot open in Brazil, did I get Hepatitis or Tetanus while I was traveling? I wasn’t sure if I had ever really received my Hep-A booster (I have now). What if it was meningitis? Nothing was out of the question. The self-diagnosis continued as I made calls.
I attempted the University of Kentucky travel clinic, but they turned me down. Then a few more doctors who could not see me any sooner. Finally, my dad stepped in and recommended a Dr. that he had visited a few times. His office was quiet, and he thought he’d actually try to help me find the root cause.
He was right. The Doctor was available to see me in the next few days.
So I waited anxiously as I continued to self-diagnose. I’ll never forget standing over my parent’s kitchen counter as I compared my notes of symptoms to the symptoms of Lyme Disease on the CDC website. They aligned quite well. Then I got to the end – “a bullseye rash that can look like ringworm.”
I froze. My heart broke. My stomach dropped. My brain waves rushed my memory back to that afternoon at my friend Sarah’s.
“But how!?” I screamed to myself. “Impossible,” I thought.
A few days later I went to the doctor for my long-awaited appointment. My dad was right. The Doctor sat with me for what seemed like two hours as we went through my symptoms, travel experience and possible issues. His nurses drew the blood and marked up the sheet for the tests I would get.
I requested they test me for Lyme Disease. The Doctor agreed.
As it turns out Banff National Park did have Lyme Disease. At the time of infection, the risk was less than 1%.
Listen to your body. Pay attention. Don’t let go until you find your way.
This concludes Part 1 of 3. Check back later as I explain the journey after diagnosis.