Emma’s path to an eventual Lyme disease diagnosis was, as she recalled, painfully fraught, complex, and long. Though she grew up in an area known to be endemic for Lyme disease, and remembers multiple tick bites and rashes as a child, her knowledge of the illness was limited. When she first started experiencing wide-ranging symptoms at 9 years old, her primary care physician dismissed them as “growing pains” after routine blood work proved inconclusive. Emma’s health further declined over the years, and she saw a total of 14 different providers before a family friend suggested the possibility of Lyme disease and recommended she see an infectious disease physician. An initial Lyme disease test showed antibodies, though without a definitive positive outcome, her infectious disease physician ruled out a Lyme disease diagnosis and referred her to another specialist. After several more years of declining health and a series of new providers, Emma consulted another infectious disease physician who ordered a two-tier diagnostic test, which came back positive for Lyme disease. From the time Emma first experienced symptoms to an eventual positive Lyme disease test, she had spent 18 years searching for answers while her symptoms, and quality of life, progressively worsened.

Illyssa was in her mid-teens when she first experienced joint pain and fatigue severe enough she was forced to leave high school and remained housebound as she passed through several providers seeking a definitive diagnosis and effective treatment. Ilyssa had no prior knowledge of Lyme disease and had no memory of having been exposed to ticks, though she spent considerable time outside as a child in a densely wooded area of the Midwest. Initial diagnoses of fibromyalgia, juvenile rheumatoid arthritis, and chronic fatigue syndrome offered temporary hope for a path forward, though as her health worsened and treatments proved ineffective, her search for answers continued. Ilyssa eventually found a physician knowledgeable in tickborne illness who questioned her previous diagnoses and recommended she take a two-tier test. Ilyssa remembers that her first three tests were negative, though recalls her physician suggesting that standard Lyme disease testing lacks appropriate sensitivity and can, in some cases, produce false negatives. Her physician encouraged Ilyssa to retest, which led to a positive result confirming a Lyme disease diagnosis that supported her physician’s initial clinical assessment.

Phoebe had led a highly active life until a tick bite after a hike led to a dramatic change in her ability to function as she once had. Following the onset of symptoms, her primary care provider ran standard bloodwork though, with little definitive insights into what was causing progressive neurological decline, referred Phoebe to a neurologist who raised the possibility of Multiple Sclerosis. Though her primary care provider had been made aware of a tick bite and the appearance of symptoms not long after, Phoebe recalls that the prospect of Lyme disease had never been raised. After an inconclusive MRI, Phoebe spent considerable time researching on her own, eventually suspecting Lyme disease as the root cause of her symptoms. She returned to her primary care provider to ask for a Lyme disease test, though an initial ELISA test came back negative. Phoebe saw three more providers before retesting with one and ordering bloodwork through a specialty lab with another. At this point, Phoebe recalls a two-tier test returning positive by CDC standards for Lyme disease, though her provider at the time said he did not know how to interpret the results in light of her past negative results, and was unwilling to treat her for Lyme disease. Phoebe believes the medical uncertainty surrounding her symptoms and delay in testing and treatment has led to longstanding complications that continue to shape and limit her day-to-day life.

Scott was a lifelong resident of an area endemic for Lyme disease and knew several friends and family members who had contracted it over the years. He recalls being aware of the risks of infection and followed appropriate preventative protocols when outdoors and in areas where tick exposure was likely. After experiencing a bout of flu-like symptoms, swollen and stiff joints, and rashes during a summer spent largely outdoors, Scott suspected exposure and made an appointment with a family medicine doctor to have what he believed would be a straightforward Lyme disease test. When initial testing returned negative, and his provider decided against offering treatment, Scott felt forced to seek additional care given his belief that his symptoms were directly tied to his exposure to ticks. Scott recalls having a follow-up two-tiered test with another provider, which showed an equivocal first part result and a negative second part. This provider again suggested it was unlikely to be Lyme disease leading Scott to continue to pursue help. A third Lyme disease test with a new provider revealed a positive first result, which Scott recalls, was enough for this provider to suspect Lyme disease and offer treatment. The path to an eventual diagnosis and the initiation of treatment for Lyme disease took over a year, which Scott alleges caused significant setbacks in his recovery.

Greg, an avid outdoorsman who had cursory knowledge of Lyme disease but lived in a region where he believed Lyme disease was rare, faced an unexpectedly arduous path to an eventual Lyme disease diagnosis. Initial perplexing symptoms led him to a provider who ordered a Lyme disease test after Greg’s urging, which came back positive. Told that the result was a “false positive” given the unlikely chance of having contracted Lyme disease in his region, Greg’s provider opted not to provide treatment for Lyme disease and referred Greg to a rheumatologist. Greg recalls having let go of the possibility of Lyme disease as he believed his provider, though a later encounter with a family medicine doctor who suspected Lyme disease after her clinical assessment, led him to agree to retest. His second test revealed an additional positive result for Lyme disease, and given the constellation of symptoms he had along with his provider’s clinical review, he soon began treatment for Lyme disease. Greg believes had he not had the benefit of seeing an additional provider who was knowledgeable in tickborne illness, he may have deteriorated further.