Spoonie Stories: No One Believed I Had Lyme Disease

I knew it! I knew it all along. I knew there was something wrong with me, but no one believed me. My name is Lindsey Collins and I have Lyme disease.

Two years ago, I went to Camp Fuller; it is a sleep-away camp in Rhode Island that I attended for three years. There is nothing I love more than sailing on the pond, hanging out with friends and being surrounded by nature. One day in the dining hall, they made an announcement saying, “If you find a tick on you do not panic, report to nurse immediately! Whatever you do, don’t try removing it by yourself”. I would check myself every day and I kept telling myself that I was lucky because I did not find any ticks or marks on me; well, at least I didn’t until I got home.

After spending six weeks at the camp in the woods, I came home with a strange mark on my hip. It was red and shaped like a bull’s-eye. I showed my mom and she told me she had never seen anything like it, but assumed that it was just a bug bite. since we did not know what it was and I felt fine at the time, we did nothing about it.  Then I started doing this weird cracking thing with my neck and I started to become very tired. We still didn’t know what was wrong with me. A few months after my bull’s-eye disappeared my cousin Emily, who happens to be the founder of PICCPerfect, came to town and we explained to her what we saw on my hip, and she explained to me that it could be Lyme disease.

My mom and I traded confused looks with each other. Emily spent time with me to explain what it was and some symptoms that come with it, at that moment I knew I had Lyme disease. My mom took me to a doctor in Miami to have some blood drawn, so we could have it sent to a lab to see if the results would come back positive but they didn’t. Even though the doctor did not specialize in Lyme, nor did he know anything about it, he told my mom that I was fine and that there was nothing wrong with me, so my mom stopped worrying about it, but I didn’t.

As time progressed, I noticed that I was starting to get nauseous; at times, I would stutter my words; I would feel depressed at random times, but worst of all I would forget things often. I would have full blown conversations with people and within seconds I would forget who or what we were talking about. People thought I was doing it on purpose to get attention, but sadly I wasn’t. I just couldn’t remember these things to save my life. I started to do research on Lyme to understand what it is, how it comes and what it does to you. I even bought an app on my phone to learn about it.

Three months ago is when I hit my breaking point. I told Emily, “I don’t feel good, no one believes me and I need to see a real Lyme doctor as soon as possible”. Emily was able to understand me because she has been fighting Lyme herself for years and she knows how it feels to feel sick every day. She recommended a doctor in Rhode Island to my mom and told her to make an appointment. My mom took her advice and made an appointment for me. That weekend we flew up to Rhode Island to see the doctor. After conducting several tests, the doctor concluded that I have Lyme disease. I wasn’t shocked or upset when I received this heartbreaking news because in my heart I knew I had it all along, and I’m glad we are doing something about it now. I’m grateful for Emily telling my mom to have me checked again because if we didn’t catch the disease in time, I can’t imagine what could have happened to me or how my life would be in a few years.

Although I know my life won’t be like how it use to be because I will be on treatment and I still don’t feel well most of the time, I’m not going to let a tick ruin my life because I’m on a mission to turn my #LymeIntoLemonAid.


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