Williamson County, TN

Infected: mid-1980s
Diagnosed: 2014
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.

Sarah HebertLyme 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.

Do visit Sarah’s blog. You can also check out her prevention video below and a more comprehensive Lyme information video on our blog.


2 Comments on “Sarah H.

  1. Hi, Sarah. My story is very, very similar to yours. I wouldn’t wish it on anyone to know this pain so young, for it to be so constant that it felt like another parent. My body is currently being nuked by antibiotics and it’s not as painful as going untreated, but boy it’s not fun. What gives me hope is that at the beginning of my treatment, during the stabilization phase, I actually improved a lot in six months. My brain was still cooking inside of my skull, but there was some magic in the drug cocktail that gave me a bit of my mind back. I have most of your symptoms and the same sequence of life events, and I can honestly say that it’s no way to grow up. And I’m sorry that we understand each other, because this kind of knowledge comes with a very high price. But it’s good not to be alone. Best wishes to you.

  2. Hi Sarah. My name is Kendra and I would like to speak to you regarding your doctor in TN. In 2012, after giving birth to my first child in Nashville, I started developing symptoms. I have had many tests done and all came back negative so no one but me suspects Lyme. I have a few of the symptoms you mentioned and more. It’s frustrating constantly living in a body that I know is not the same. I haven’t felt the same since 2012. I would like to send you my story to see what you think. I am in Memphis now but like I said I did live in Nashville when the symptoms first occurred. Everyone thinks it’s all in my head, but after reading your story and other stories I know I may have Lyme disease.

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