"It'll never happen to me" Syndrome. Infection, denial, and diagnosis.

It was early June. I arrived in Connecticut and was greeted by the kind of weather you never want on your vacation. It was cool for the season, it had been raining for a week. By the weekend the rain abated and I was finally able to spend some quality time with friends. I didn't think twice about venturing into the woods to go for a joyride in my buddy's death mobile, wasn't concerned about cutting through a bushy path to get from one house to another, had a little too much to drink when I decided to wrestle with my friend in the grass. It could have been any time that day that a tiny insect found its way onto my skin and settled in for a little snack. 

Later I would learn that it was the perfect storm. The location, the time, the weather, all of the conditions were ideal to put me at the highest risk of infection. I grew up in Connecticut. My dad, a lifelong hunter, was infected with Lyme disease twice. I should have known better, but perhaps the last few years of living up north and then becoming a city dweller dulled my good sense. It might have been my love of drinking a good summer brew all day on a boat that caused me to only half remember a month later that I might have brushed an annoying speck off of my arm at some point during the day.

My uncharacteristic and misdiagnosed Lyme disease rash

All I know is that two days later on my drive back up to Canada, I became fixated on an irritating rash on my arm. Only when I got home did I stop and take a good look at it. I took a picture and sent it to my dad, asking what he thought. He told me to get it checked out right away, but naturally I didn't. I assumed it was the beginning of ringworm, something common in gyms, and I had indeed trained jiu jitsu while I was on vacation.

The rash remained for a week. I still believed it was either ringworm or a spider bite (come to find out, this is a common misdiagnosis). I treated it with both topical antifungal and Benadryl, assuming one of the two would work, and after a week the rash went away.

Characteristic "bulls-eye rash" associated with Lyme disease

Did I suspect Lyme? Yes. But I quickly dismissed the idea after a quick online search yielded rashes that looked like a bulls-eye, and the fact that I couldn't stop scratching the damn thing was contrary to claims that Lyme rashes don't itch at all.

 

 

A Classic Portrayal of Lyme Symptoms

Around the time the rash disappeared, and this puts us at around Days 7-10 after I believe I was bitten, I came down with flu symptoms. I first experienced a hangover worse than usual, and uncharacteristic low energy during training. Then my throat was sore, I had a dry cough, and I just felt like crap. One morning I woke up feeling like I had been hit by a truck. I broke out in a feverish sweat mopping the mats at the gym, and the task sucked all the energy out of me. *The list of symptoms became longer. As time passed, the symptoms fluctuated and evolved, but I will discuss it in a future post.

Around that time, others had been complaining of similar flu symptoms, so again I didn't think much of it. I expected it to pass over the next few days. Then I heard from my friend JP, who is a "Lyme survivor" if you will. He saw one of my complaints about feeling sick on Facebook and sent me a message "Whats your symptoms? You got me worried because you were in Lyme country." By the end of this conversation, he gave me the coordinates for his doctor and didn't leave me with a choice. He made me realize that if I had even the slightest suspicion of having contracted Lyme, I needed to get it checked out right away.

I remember what did it for me. JP sent me to the CanLyme website and as I read the extensive list of symptoms, what stuck out to me the most was the psychological and neurological symptoms. Since my return to work that week, I had suffered from extreme mood swings, anxiety, panic attacks, insomnia, depression-- it was like the most severe PMS I ever had. I felt like an idiot every time I talked to my boss because I couldn't think straight, my worlds came out jumbled, I felt that "brain fog" that Lymies know very well. I thought it was simply a difficulty readjusting to work after being on vacation, but when I saw those things on the list of symptoms something just clicked inside of me. 

I walked into the doctor's office with the intention of "ruling out Lyme" as a possible culprit for my summer flu, only for her to confidently diagnose that I did have it. I walked out of the clinic with a prescription for two weeks of doxycyclin and the realization that this entire time, deep inside I must have known. I had all of the classic symptoms of Lyme infection, symptoms I had always thought I was well educated about. Maybe I was afraid to confront the possibility that I had contracted the "worst fear" disease my parents instilled in me since I was a kid.

To top off what is already a long post, I just want to share the things I didn't know. The reasons I had been in denial and didn't see a doctor sooner, because it is important.

Facts that I didn't know about Lyme disease and why I didn't see a doctor sooner:

• Ticks are most active after periods of rainy weather, and spend time "ambushing" potential hosts in grass and bushes on the sides of paths
• The month of June is prime time for Lyme infection
• A tick does not have to be on you for 24 hours in order to get infected. It only has to be on you long enough for the bacteria to get from its stomach to your blood stream
• Not all cases of Lyme present with a bulls-eye rash. According to the CanLyme site, "over 50% of people report no rash of any kind" and only 9% of Lyme cases are identified by rashes in the form of the characteristic bulls-eye, otherwise the appearance of the rash can vary greatly.

And finally, the reason for this blog and all of the posts you will read after this one...

Lyme is not like a case of strep throat. Contrary to certain literature and what some doctors say, it is not a guarantee that Lyme disease can be completely cured with two weeks of antibiotics-- even if you get treatment as early as I did-- and is a condition that needs to be treated seriously.

My biggest regret is not seeing a doctor as soon as that rash showed up. I wish I had seen it before I left Connecticut and gone to my doctor there right away. Because it was within 48 hours of infection, he would have given me a few pills, and I probably would have been fine.

Welcome to my life with Lyme disease

If I had known that my experience with Lyme disease was going to be the way it was, I would have started this blog on day one. I don't want this to be a "how to" guide on how to deal with such a debilitating and emotionally trying disease, because I have yet to figure that out for myself. To tell you the truth, what I was and still am dealing with now is not anywhere near the level that many many others have suffered through. But I still feel the need to share my experience and what I learned from it. If anything, just to have a positive outlet for the thoughts and emotions that plague me every day. I know I am not the only one going through this experience, and I find some comfort in reading the words of others. Maybe one day someone will feel the same about the words on this page.

In one month I will be turning 26 years old. When I got sick I was in the best shape of my life. My body was reaching a level of fitness and athleticism that I never anticipated. I was the picture of perfect health. I started every day with a green smoothie and ate clean all day. Upon finishing work I would reward myself with a solid run, or weight training, or a Brazilian jiu jitsu class. I did yoga every morning, and on my rest days again at night. I looked great, I felt great, everything was just great.

Until I went on vacation in early June 2013. I went to Connecticut to visit my friends and family, and came back to Montreal, Quebec, with the worst souvenir you could possibly imagine. Two weeks after the day I believe I was bitten, I went to a doctor to "rule out" the possibility of Lyme, as I was having suspicious symptoms.. and instead found it to be confirmed.

What I expected to be two weeks of antibiotics, followed by a swift return to normal, became a summer that never existed. Life in an empty shell. Not being able to go to work. Not having the strength nor the will to move or even eat. The mental anguish and physical pain that you would never think would have come from a creature the size of the tip of a pin. And a lot of learning about this elusive disease, the political dilemmas surrounding it, and realizing the truth about recovery.

I will start from the beginning. With thanks to social media, my personal journals, and my cell phone's data for helping to jog my memory. I will go back and relive every detail for the purpose of hopefully being able to put it behind me and move forward. And hopefully by the time I finish with this blog, I won't need it anymore. Hopefully I will have found a "new normal," where maybe I won't be able to train every day or eat whatever I want, but simply won't feel sick all the time.

Thanks for reading. And wish me luck.