Study finds misdiagnosis and delayed diagnosis common for Lyme disease patients

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Individuals with Lyme disease are all too frequently misdiagnosed with another illness or receive a delayed diagnosis, which can lower their chances for a complete recovery. Such findings have been described in the literature. Now, patient-reported outcome data from the MyLymeData online patient registry reports the same problem. 

A study published in Healthcare (Basel) by Johnson and colleagues [1] summarizes information provided by 3,903 individuals registered with MyLymeData.

The participants reported a delay in diagnosis. “More than half (51%) reported that it took them more than three years to be diagnosed and roughly the same proportion (54%) saw five or more clinicians before diagnosis,” says Johnson.

[bctt tweet=”More than 50% of  Lyme disease patients report that it took them more than 3 years to be diagnosed.” username=”DrDanielCameron”]

Furthermore, there was a delay in diagnosis even when patients had an early onset of symptoms, Johnson explains. “Diagnostic delays occurred despite the fact that 45% of participants reported early symptoms of Lyme disease within days to weeks of [tick] exposure.”

The reasons for such delays included false negative lab tests (37%) or positive test results “that were dismissed as ‘false-positives’ (13%),” she says.

Also, “the majority of patients (72%) reported being misdiagnosed with another condition prior to their Lyme diagnosis.”

The most common misdiagnosis for those patients included: psychiatric disorder (52%), fibromyalgia (43%) and chronic fatigue syndrome (42%).

“Although misdiagnosis with a psychiatric illness was common (52%),” says Johnson, “only 18% reported psychiatric symptoms as being among their three worst symptoms.”

confused, memory, concentrateThe symptoms they reported are similar to those in the literature. “Three worst symptoms included neurologic-associated symptoms (84%) and fatigue (62%), followed by musculoskeletal-associated symptoms (57%),” Johnson states.

Neurologic symptoms included cognitive impairment, sleep impairment, memory loss, psychiatric manifestations, headaches and twitching, with cognitive impairment (30%) and neuropathy (29%).

Musculoskeletal symptoms included muscle aches and joint pain.

The MyLymeData survey results found that patients frequently required symptomatic treatment, Johnson explains.

“Sleep medications [were] taken at higher rates (34%) than the general age-adjusted population (9%).”

“Thyroid medication, which is sometimes associated with managing fatigue, was also much higher (33%) than the general age-adjusted population (8%).”

“Pain-associated symptoms (joint pain, muscle aches, or neuropathy) were common (71%), and prescription pain medication usage (26%) was higher than the age-adjusted rate in the US general population (16%).”


Editor’s note: MyLymeData is a project by, which is a grassroots non-profit organization that supports the interests of Lyme disease patients. The organization has been conducting and publishing peer-reviewed big data patient surveys for over 10 years.


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  1. Johnson L, Shapiro M, Mankoff J. Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis. Healthcare (Basel). 2018;6(4).




1 Reply to "Study finds misdiagnosis and delayed diagnosis common for Lyme disease patients"

  • Julie A Wood
    04/24/2020 (9:25 am)

    A year ago February I finally got a western medicine blood test that shows lyme bartonella, EBV, SIRS severe mold toxicity and candida. After 25 years I still cannot be treated. I live in michigan and the closest llmd is over 200 miles. I guess I just lay here alone and isolated, and die alone

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