Estimates suggest as few as 7% of cases of Lyme disease are reported each year, making awareness among the public and clinicians critical.
May is National Lyme Disease Awareness Month. It’s estimated roughly 476,000 Americans are diagnosed and treated for Lyme disease each year, yet only around 35,000 cases are reported to the Nationally Notifiable Diseases Surveillance System (NNDSS), preventing the Centers for Disease Control and Prevention (CDC) from accurately monitoring features of the disease.
LocumTenens.com associate Kendall Lasseter has experienced just how detrimental the effects of Lyme can be firsthand and just how difficult it can be to receive a diagnosis, despite constant, debilitating symptoms.
“When I was in college, I was getting ready, and suddenly my vision went out while I was doing my makeup. I thought my mascara had gotten in my eyes at first, but I realized that wasn’t it when I experienced head pain as if something had hit me really hard,” says Kendall. After a few seconds of complete darkness and a thirty-minute window of dark, blurry vision, Kendall’s eyesight came back sporadically, but the pain she was experiencing in her head never went away.
Kendall kept a log of her symptoms to give to her clinicians and still experienced debilitating symptoms, even on “good” days.
Over the next two years, Kendall visited countless doctors trying to find the cause of her symptoms, which now included numbness on the right side of her body, joint pain, and exhaustion. “I was at the doctor’s office three times a week and things were just getting worse. Thankfully my professors knew me and worked with me so I was able to graduate, and I was able to start my job at LocumTenens.com.” But things continued to get worse. “There were times I couldn’t lift my head up, I was having tremors and couldn’t hold anything and I started to experience memory loss. I was hallucinating. It was terrifying.”
Lyme can be difficult to diagnose because the symptoms of the disease often mimic other conditions. For that reason, Kendall sought care from multiple specialists. “I visited endocrinologists, neurologists, ophthalmologists, you name it.” She was diagnosed with migraines, adrenal fatigue and even anxiety brought on by the stress of graduation and her new job. But she knew none of these diagnoses accurately fit the complexity of her situation.
It wasn’t until Kendall happened to speak with a friend whose cousin had been diagnosed with Lyme disease after experiencing similar symptoms that she suspected she might have it, too. Like many others with Lyme, Kendall didn’t remember getting bit by a tick, and she never noticed a bullseye rash. “I had my first test at a primary care doctor’s office, but it was a false negative. So I visited an infectious disease doctor who was familiar with the prevalence of false negatives, and he tested me three or four more times."
"I’ll never forget finally getting an email from him. I tested positive. I had a diagnosis.”
Tests for Lyme disease are notorious for returning false negatives. Anywhere from 20 to 30% of patients who actually have Lyme will have a false negative antibody test, and more than 50% of patients with Lyme will experience a false negative using the two-tiered testing system recommended by the CDC. It’s imperative for clinicians to be mindful of the level of accuracy of these tests when it’s suspected a patient might have this condition.
Even after her diagnosis, Kendall still had a long and complicated road to wellness, which necessitated care from even more specialists. “Since I had been sick for two years, we didn’t know whether some of my symptoms would ever go away. We didn’t know if it had degenerated my nervous system and whether my vision would ever return to normal.” Kendall took two rounds of antibiotics to treat both the Lyme and co-infections which often accompany it and took supplements to help support her brain function and adrenals. She also did other alternative treatments and followed a strict anti-inflammatory diet to allow her body to heal. Because Lyme disease is caused by a spirochete bacterium which causes inflammation, it’s important patients are careful not to exacerbate the inflammation they are experiencing.
Today, Kendall is healthy. Her wellness can be attributed to her, her family’s and her friends’ advocacy for her health and her entire team of clinicians who provided care during her years’ long struggle with Lyme disease. But there are countless other patients like Kendall seeking answers. “There is still so much that’s not known about Lyme disease and how it affects people,” says Kendall. “And it’s so important both the public and medical professionals are aware of this disease, its symptoms and the damage it can cause so those who are suffering can receive an accurate diagnosis and start to heal.”