There are countless stories of people fighting for months or years to get an accurate diagnosis. There are the mysterious symptoms that could be indicative of any number of issues. Then, there’s my story.
I felt I was at my peak physical performance. In September of 2012, I ran two half marathons in the same weekend, with the second being just two minutes away from my PR. My second marathon in November proved to be a huge improvement from the first, and I ran a 50K for the first time in December. “Were you feeling really tired?” people ask. If I did, I didn’t notice. When you’re busy and you run long distances to relax, some degree of tiredness is to be expected.
My first race of 2013 was a 5K in January and a significant PR. My confidence and excitement level were high. It felt like a good start to my racing year, particularly as I was targeting a March marathon and April 50K. When I woke up the morning after the 5K and my knee was swollen, I didn’t think much of it. I ran 10 miles that night and felt fine, but I knew something was off. I researched doctors and found an orthopedist that sounded trustworthy. I figured he’d tell me to dial back the miles for a few weeks and send me on my way. What a joke!
At my first appointment, he drained the synovial fluid from my very swollen right knee. “You said you run trails. Do you mind if I test the fluid for Lyme?” he asked as he was putting the bandage on my knee. I thought it seemed like an afterthought on his part. A Lyme PCR test takes about a week, which gave me a week to repeatedly and ignorantly declare things like, “I don’t have Lyme! I never saw a tick!” The test was positive.
Thus, my Lyme diagnosis came thanks to the wisdom of the orthopedist that drained the fluid from my knee. There had been no tick bite, no bull’s eye rash, no months of unexplained tiredness or suffering performance. I was blindsided. I had the subsequent round of traditional blood work used to diagnosis Lyme disease and every test came back positive.
In my experience, most people seem to react to news of a Lyme diagnosis in one of a handful of ways. Some underestimate the potential significance of Lyme and what havoc it can cause. Perhaps they had a tick bite, the prescribed precautionary 10 days of oral antibiotics, and never gave it another thought. They were lucky! There’s also a camp of people who have horror stories they feel compelled to share. They usually involve the brother of the friend of the aunt of the ex-sister-in-law who had to quit their job, got divorced, and is now a hermit with 19 cats. You get the point.
Others are blissfully ignorant. Lyme disease is one of those things you hear about but maybe don’t take the time to understand. It’s something that happens to other people, not to you. If you are one of those people, please take time to educate yourself. I’ve included some links below. Learn. Lyme does not attack only crazy trail runners, nor are you immune because you’re not out playing in the woods every weekend.
I don’t pretend to know much about Lyme or even Lyme prevention. I’ve tried to avoid forums and endless Googling. All I know is my experience with the disease, and with trying to find others with similar stories. Plenty of my Googling was for distance runners with Lyme disease, or running after Lyme. The information just wasn’t there, which was part of why I wanted to share. I was desperate for success stories.
When I learned that Runner’s World legend and running community great Bart Yasso dealt with Lyme, I almost immediately downloaded his book, My Life on the Run. The humor in those pages was comforting for a weekend spent reading and icing with frozen vegetables instead of out on a training run.
Over the last few months, I have done three different rounds of oral antibiotics, narrowly escaping the surgical implantation of a PICC line for intravenous antibiotics. Both knees have taken turns swelling to ridiculous sizes. I’ve been unable to straighten my leg and been unable to do any kind of exercise outside of a pool. I had a Baker’s cyst that caused my leg, ankle, and foot to swell to equally impressive sizes. The disease put an end to my streak of running at least one mile a day after 431 days. But, I’ve been really lucky in that the Lyme arthritis has been my only symptom. If it hadn’t attacked my knees and thus running, something I love dearly, I can only imagine how much worse it could have been.
I was always thankful to run, but that thankfulness really grew when the ability was taken away. I am so thankful for the miles run with family and friends over the last few years, in a way that is amplified greatly thanks to Lyme.
This blog project had been suspended, in part because of the busyness of life and other obligations, but also because I wasn’t sure how I wanted to address what was wrong. I have no intention of this becoming a Lyme-focused blog. Had I immediately posted about it at the beginning of the journey, about the disease and how I was feeling, I would have had to revise it countless times over. Sharing every step would have been draining for me and a miserable read for others.
My intention in sharing this is to hopefully encourage someone to pay more attention to Lyme disease. Prevent it. Spray yourself with some repellent and be cognizant of the risks so you can keep enjoying what you’re doing. I also want to add a hopeful voice to the Lyme conversation in the blogosphere. I’m not sure that I’m in the clear, but I am positive that I am on the right path.
Two weeks ago I was cleared to do pretty much everything other than run. I immediately started taking long walks. Yesterday, I was able to complete the awesome Ironmaster’s Challenge 15K trek with my husband. For the first time since January, I ran a few steps. Mostly, we hiked. The running wasn’t very far, but on beautiful trails on a perfect spring day, it was harder to walk than run. Don’t tell the doctor. I’ve only been off antibiotics a few days, and I’m interested to see what my knees do over the next few days. The feeling of being out on the trails, splashing through creek crossings and mud, was quite an improvement from three weeks ago when I could hardly walk the dog.
A race report will follow. In the meantime, thanks for reading and cheers to fellow runners and Lyme-battle-ers alike.
Happy and healthy running,
CDC – I’ve been using this as my primary reference. Make sure to click around in the sidebar on the left, particularly on the prevention guide and statistics, to see if you’re in an area known for Lyme.
Infectious Disease – This is more heavy-duty, but still helpful.