Lyme disease is an infectious disease many believe doctors are quick to disregard. Of all the possible illnesses you could have, Lyme is last on their list of considerations. At least, this was the case for me when I was detrimentally ill at 12 years old.   

A year before my diagnosis date, I had random, sporadic symptoms. One day, my right quad atrophied. My left was unaffected, but my right quad was now 4 inches smaller than my left. I saw a physical therapist to regain the muscle, but nobody understood why my leg deteriorated. I went to an orthopedic surgeon to look at my knee and make sure nothing internally was messed up with my ACL or MCL. However, he said the tests came back normal. Everything was normal. So, after I regained my strength, we just went back to life as usual, thinking maybe what had happened was a fluke.   

After this, more symptoms showed up. I got what was believed to be cellulitis in my ankle and my right leg, and I began taking steroids to treat it. This, as we learned, is a terrible thing to do while you have Lyme disease because it can cause the bacteria to double, and it did. I followed this treatment plan for a month with no improvement. One day, it suddenly went away. This marked another random symptom that mysteriously cured itself.   

The third red flag occurred when the fatigue started. I was in sixth grade at the time, so my mom would still wake me up for school in the mornings. No matter how hard she tried, often, I would not get up. There were days when she would tell me she was trying to wake me for an hour straight, and I would have no recollection of it. There were times she told me I talked to her and told her I was getting up, but I never did, which made sense because I never remembered speaking to her. They say you sleep one-third of your life away, but from ages 12-18, I was sleeping away two-thirds of it. I had many days where I was asleep more than I was awake. Suddenly, muscle aches began, including debilitating migraines keeping me up all night. Some nights, I would wake my mom up screaming in pain because my head or my legs hurt so badly, and nothing would help. I laid awake for hours, just wondering when the pain would subside so I could finally go back to sleep.   

As more and more random symptoms mysteriously came and went, my mom decided to do some research of her own. When I went for my yearly doctor’s checkup, my mom and I decided we would bring up some of the symptoms I had been having for the past year. In the beginning, my mom thought my extreme fatigue, achy muscles and joints and irritability were just growing pains that come with being a teenager, but after she did some research, it all started to make sense. All of the symptoms were connected. When we told the doctor my symptoms, she thought I had arthritis.  

A 12-year-old with arthritis—makes total sense, right?   

My mom, not satisfied with only getting tested for arthritis, asked the doctor if she thought it could be Lyme disease. My doctor assured my mother it was not; it couldn’t be. I would have had a bullseye rash. My mom insisted I get the test done, so eventually, the doctor agreed. I got the bloodwork, and two days later, my results came in.   

I came in from playing basketball outside to find my entire family sitting in my living room. When I walked in, I asked if my test results had come back, as I was eager to find out what could be wrong with me. My family all looked at me with sad eyes. My mother told me my test results had come in, and when I heard that, I was convinced it was arthritis. Contrary to my belief, she told me I had what they called “late Lyme disease.” All 12 strands they tested me for were completely lit up. In every way possible, I had Lyme disease. From that day on, until I was finally in remission at 18, my life was a series of unwanted doctor’s appointments that cost a ridiculous amount of money, days wasted due to never-ending sleep, surgeries, hundreds of pills, and treatments. My life was never the same after that day; it was turned upside down.   

If you ever think there is even a small possibility you have Lyme disease, get tested. If you ever find a tick on you, get on doxycycline. If I found out I had Lyme when I was first bitten by a tick, I wouldn’t have been sick for six years of my life. Always ask, and always speak up for yourself. If my mom hadn’t insisted I get that Lyme test, there’s a chance I wouldn’t be here writing my story because maybe I never would have been diagnosed. The diagnosis is just the start of it.