Me and Lyme

Recently, a lot of people have asked me about Lyme Disease and how it has manifested itself. Essentially, Lyme Disease is caused by a bacteria called Borrelia burgdorferi sensu stricto that is carried by ticks. I don't remember ever being bitten by a tick, which can and does happen in many cases. This bacteria can affect many different parts of the body and, as many people with Lyme will tell you, symptoms can vary from time to time. Here is a brief history of my symptoms leading up to my diagnosis. 

Fall 2012-Spring 2013

      During my Junior year of college I experienced a dark depression that included debilitating panic attacks and many long nights with little to no sleep. I also began having what I called "Crashes." I wasn't sleeping well, but often, even after nights of getting sleep, I would come home after only attending one class and worry that I might not make it into bed. I had this incredible need to sleep so much, and it was very difficult to learn new information. 

       I attributed all of this to a lot of emotional stress I was going through. My parents were leaving the mission field, and my major was difficult. I had also worked a very tough job the summer before the fall. I had a battery of tests done, but they all came back negative. According to the doctor, there was nothing wrong with me. I remember asking a doctor for a note that I could give one of my teachers to prove that I hadn't been skipping class for something silly. He wrote, 'Rachel has been tested for fatigue,' and then asked, "Will that do?" I wanted to scream that no, it absolutely would not do. Tested for fatigue? Anyone of the students in any of my classes could have tested for fatigue and come out positive. This was college. 

        In the end, I went through a semester of counseling, which helped to alleviate a lot of my symptoms. I thought I must be fine, and that everything was the result of my summer job and other emotional factors. 

Summer 2013-Spring 2014

       I worked at a music camp in Michigan that summer and it was incredible... except that a few weeks before the end of the summer I suddenly came down with a very strange rash all over my body. Benadryl didn't help it, and so the doctor put me on a brief steroid treatment. It went away after a week and a half. I also experienced fatigue problems again, but assumed this was just another part of camp life. The week after camp, I had this strange cough that kept me up very late at night. Every time I tried to go to sleep, I kept coughing. It took me almost a month to get over it, and even then I would sometimes start coughing for no reason that I could determine. 

         The school year started and even though I had a full schedule and workstudy, I still had a very difficult time sleeping. I couldn't figure out why. As the year progressed, I experienced more fatigue and even had a few crashes. I was also sick a lot with recurring colds and coughs. During two of my harder classes, I noticed something strange: I had a difficult time retaining information when reading. This had never been hard for me before. Despite all of the hard work I had done in counseling, I still had a few panic attacks, as well as another smaller bout of depression. This didn't make that much sense because I was in a good place with God, my family, and my friends relationally. I have always been an intense person, so I decided that it must be related to that and reconciled myself to the idea that I might always be a little more prone to sadness than other people. The fact that all of these things might be related never crossed my mind. 

Summer 2014- Summer 2015

       During this year I had to realize that something was indeed wrong with me. For one thing, despite being out of school and having wonderful things happening in my career and friendships, I was still experiencing strange periods of sadness. They could happen at any time and for no seeming reason. One time, after a great day of teaching piano lessons, a solid rehearsal for my grad school audition, and a good talk with a close friend, I came home and wept about, well, I don't know what. It made no sense. I was also constantly "crashing," and feeling sick or coughing. My body would ache all over, even though I wasn't doing that much physical exercise. 

       More and more frequently, I woke up in the morning and had a panic attack about leaving my room or the house, even though I loved my housemates and my job. It could take me an hour to come out of my room because I was incredibly paranoid about leaving it. I also suffered from what I can only call social paranoia: whenever I went to church I felt scared or had a hard time interacting with others. This also happened sometimes before going out with friends, and it made it harder and harder to want to engage with people. I also forgot about little things, and would run frantically around the house looking for something that I had had in my hands ten minutes ago. 

         At the same time, I would have very good days, and think that I must be making it all out to be worse than it really was. "God," I said one night, "am I losing my mind here?" 

       During this time, my little sister was diagnosed with Lyme by a specialist in Washington. As we discussed her symptoms, I wondered very briefly if I was sick, too. But no, it wasn't possible. My little sister was much more sick than I was. Months later, my older sister was also diagnosed with Lyme. At this point, my parents urged me to seek treatment, which I at first denied that I needed. My sisters were very patient with me as I asked about their symptoms and finally came to the point of arranging to see the same specialist. 

       The day of the appointment I felt more nervous than I did before my senior piano recital. What if I wasn't sick, and this was all just my imagination? After praying for me, the specialist began testing different joints and parts of my body. He pressed down on a spot just below my collarbone and next to my right shoulder. It hurt so much that I started crying. "Well," he said, "You definitely have Lyme disease." Apparently that joint is a very telling symptom. As he continued to test me, he would make passing comments like, "Do you ever struggle with going up and down stairs?" or "Have you experienced strange mood swings or depression?" and "Are your sleeping patterns erratic?" I don't think I've ever been more relieved to hear someone say that I was sick. Finally, I had proof that so much of what I had experienced was related and could be treated.