Williamson County, TN
Current health: still struggling through treatment
Watching your body go downhill … is difficult. … But getting a diagnosis has given me hope… I am going to beat this, I am fighting with everything I’ve got to get rid of the wretched spirochetes responsible for this disease. –Sarah H.
Sarah’s story in her own words: I’ve always known something was “off” in my body, which isn’t surprising given my Lyme disease battle began at a young age. I lived in a wooded area of Franklin, Tennessee where ticks were a regular part of my existence. I can vividly remember sitting on the brick stairs of my house, picking them off of my dog before she would come inside.
I never developed a bullseye rash, so I cannot pinpoint the exact date that I became infected. I did, however, struggle with hives and rashes throughout my childhood that were never firmly tied to any sort of allergy. Around twelve years old, I developed Gastroesophageal reflux disease (GERD) and a panic condition. Major depression and chronic anxiety followed closely behind. Panic attacks became more and more frequent until I was experiencing them at least ten times a day, along with dissociative episodes that made me feel like I wasn’t in my body. My mother lovingly put me into therapy in hopes that I would improve. Mental health professionals prescribed medication (which alleviated some of the symptoms), but the diagnoses never felt right to me. I had chronic pain in my nervous system, which never fit the clinical descriptions of mental health conditions.
Lyme disease really reared its ugly head three years ago during the busiest (albeit happiest) time in my life. I was working full-time in an OB/GYN clinic, taking prerequisite courses to apply to nursing school at night, and regularly running trails to compete in a race. I felt like I’d never been healthier, until weird symptoms started popping up: consistent UTIs, pelvic floor myalgia, pain in my lungs, shortness of breath, elevated blood pressure, and a flu-like feeling that never went away.
I started complaining to my internist who referred me to specialist, and received more medication to mask the symptoms. To my internist’s credit, she did run an ELISA for Lyme. I had no idea, however, that the test misses at least 35% of culture-proven Lyme cases. It still amazes me that doctors utilize a test with such low sensitivity without informing their patients. As a future nurse, I hope to always keep my patients in the know.
By the time I got a culture-proven diagnosis, I knew I had Lyme. In the meantime, I had developed a host of additional symptoms: horrific joint pain (especially in my spine), tinnitus, muscle twitching and weakness, blurry vision, bouts of dissociation/confusion, a vibrating sensation throughout my body, high blood pressure (averaging 150/100), swollen lymph nodes, odd bruising, and consistent pressure in my head. So, when I started on the first antibiotic regime I felt like I was about to fight a losing battle.
I’m going to be frank. I’m still suffering through my treatment. I have a long road ahead, but I am fighting with everything I’ve got to rid my body of the wretched spirochetes responsible for this disease. I’m lucky to have found a truly compassionate doctor that listens to me and believes that everyone should “trust their own bodies.” With her help, I hope to return to Duke University to finish my nursing program. In the meantime, I am growing my blog—When Life Gives You Lyme, Make a Margarita—as well as making videos to spread awareness about the disease. I refuse to lose hope.