My Story
While I was attending Emory University in the Fall of 2013, I struggled with the inescapable feeling that the life was slowly being drained out of my body. As the semester progressed, any residual excitement was no match this sudden onset fatigue, muscle pain, depression, and anxiety. I began to sleep more and more until I was only getting out of bed for class, and it eventually reached the point where I could barely get out of bed at all. I remember feeling as though gravity was too much for me.
I'm from a small town in West Virginia where its uncommon not to know someone with Lyme. When I'm home, I spend the majority of my time outside, and I was raised to be aware of ticks and perform regular tick checks. Despite this, I never found a tick, I never noticed the tell-tale rash. If I had not already had knowledge of Lyme disease and known my chances of being exposed to a deer tick, its quite possible my ailment would've continued to be a mystery or been misdiagnosed. The possibility of Lyme Disease did not occur to my doctors, and they were visibly surprised when I requested the test.
I immediately began a 21 day round of Doxycycline. I let both my doctors know beforehand that this particular antibiotic had a history of making me sick, but neither offered an alternative. My doctors and I deduced that it had been at least 6 months since the tick bite, so a month of being on doxycycline in addition to being sick with late stage Lyme made life too awful to finish the semester. I took a full medical withdrawal.
I spent the next few months in bed at my parents house with no improvement. I didn't realize this at the time, but both my doctors and myself were completely Lyme illiterate. After I didn't improve, my WV doctor ordered another set of Lyme tests, and when they came back positive, she told me I still had active infection and put me back on the horrible doxycycline for another 21 days. I know now that this was completely unnecessary, because a person with Lyme disease will typically have detectable amounts of B. burgdorferi antibodies in their blood for the rest of their life-- regardless of active infection.
All of my doctors seemed to have different opinions and ways of talking about the disease, and I spent the next several months undergoing tons of tests and blood work and receiving lots of conflicting advice. I finally saw an infectious disease specialist at the Emory University Hospital who, after I waited a month for an appointment, took five minutes to tell me I didn't have active Lyme anymore despite everything I had been told, but it could take multiple years for my symptoms to subside. He gave me no advice, and basically sent me on my way with the mentality "well, this is my life now."
Since then, I've kind of taken my illness into my own hands. I stopped seeing doctors for help because I have yet to find one I trust, and I mostly manage my pain through forms of meditation and yoga and alternative healing. I think the thing that has changed the most is my mentality- and even though I still fall into bad bouts of pain or illness, I'm trying to stay positive and hope that an answer to PTLDS is uncovered soon.
I'm from a small town in West Virginia where its uncommon not to know someone with Lyme. When I'm home, I spend the majority of my time outside, and I was raised to be aware of ticks and perform regular tick checks. Despite this, I never found a tick, I never noticed the tell-tale rash. If I had not already had knowledge of Lyme disease and known my chances of being exposed to a deer tick, its quite possible my ailment would've continued to be a mystery or been misdiagnosed. The possibility of Lyme Disease did not occur to my doctors, and they were visibly surprised when I requested the test.
I immediately began a 21 day round of Doxycycline. I let both my doctors know beforehand that this particular antibiotic had a history of making me sick, but neither offered an alternative. My doctors and I deduced that it had been at least 6 months since the tick bite, so a month of being on doxycycline in addition to being sick with late stage Lyme made life too awful to finish the semester. I took a full medical withdrawal.
I spent the next few months in bed at my parents house with no improvement. I didn't realize this at the time, but both my doctors and myself were completely Lyme illiterate. After I didn't improve, my WV doctor ordered another set of Lyme tests, and when they came back positive, she told me I still had active infection and put me back on the horrible doxycycline for another 21 days. I know now that this was completely unnecessary, because a person with Lyme disease will typically have detectable amounts of B. burgdorferi antibodies in their blood for the rest of their life-- regardless of active infection.
All of my doctors seemed to have different opinions and ways of talking about the disease, and I spent the next several months undergoing tons of tests and blood work and receiving lots of conflicting advice. I finally saw an infectious disease specialist at the Emory University Hospital who, after I waited a month for an appointment, took five minutes to tell me I didn't have active Lyme anymore despite everything I had been told, but it could take multiple years for my symptoms to subside. He gave me no advice, and basically sent me on my way with the mentality "well, this is my life now."
Since then, I've kind of taken my illness into my own hands. I stopped seeing doctors for help because I have yet to find one I trust, and I mostly manage my pain through forms of meditation and yoga and alternative healing. I think the thing that has changed the most is my mentality- and even though I still fall into bad bouts of pain or illness, I'm trying to stay positive and hope that an answer to PTLDS is uncovered soon.
This page was created for Marc Bousquet's English 363 course at Emory University as part of the Domain of One's Own Initiative.