The CDC states Lyme disease is the most common vector-borne illness in the United States, and each year, an average of 329,000 new cases are reported. As we approach the month of May and Lyme Disease Awareness Month, it’s hard not to take notice of the articles by scientists and ecologists across the country warning that 2017 is poised to be the worst year for Lyme disease yet.

As incidences of Lyme disease grow, nurses play a critical role in helping patients obtain an accurate diagnosis and proper treatment. “Lyme patients are sick, they are complicated, and they have lots of ongoing complaints,” says 30-year, veteran nurse practitioner and Lyme specialist, Ruth Kriz. “They don’t fit in a nice, neat medical textbook where you have symptoms ABC. Therefore, you have a diagnosis of illness X. There are too many things that it mimics,” she says. In fact, Lyme disease is known as the “The Great Imitator” because it mimics conditions like multiple sclerosis, fibromyalgia, lupus, and chronic fatigue syndrome (to name a few).

Knowing some key pieces of information about the complexities of the illness can increase a patient’s chance of early detection. Moreover, a nurse’s knowledge of the disease could assist a previously misdiagnosed patient with accessing the appropriate medical intervention to improve their symptoms and quality of life. When left untreated, Lyme disease can have permanent, irreversible consequences for patients. Here are four things you need to know to help your patients achieve the best possible outcomes.

1. The two-tiered testing process for Lyme disease may be inaccurate.

Most nurses are probably familiar with the ELISA screening test and Western blot test–the two-tiered testing process that is often used to diagnose Lyme disease. The International Lyme and Associated Diseases Society (ILADS), a nonprofit organization dedicated to understanding Lyme disease through research and education, states, “The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.” Furthermore, “Of patients with acute culture-proven Lyme disease, 20–30% remain seronegative on serial western blot sampling. Antibody titers also appear to decline over time; thus while the western blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete.”

Although test results may be negative, patients can still be infected with Lyme disease or other tick-borne illness. As Kriz points out, it’s important to understand the symptoms of Lyme disease because, “We want to treat people, not just the lab work.”

2. As the illness sets in, a patient may complain of a broad set of symptoms.

In the initial stages of the disease, a patient may report nothing more than flu-like symptoms. But as the infection disseminates throughout the body, a host of issues could arise that may seem unrelated to one another. Some of the more common complaints a Lyme patient may have include (but aren’t limited to): unrelenting fatigue, joint pain, widespread muscle pain, disordered sleep, depression, brain fog, fevers, chills, sweating, and Bell’s palsy.

3. Not all patients will remember a tick bite or rash.

ILADS reports less than 50 percent of patients with Lyme disease remember seeing a tick bite or a bull’s-eye rash (erythema migrans). If a patient presents with a bull’s-eye rash, the rash is indicative of Lyme disease.

4. There is more than one school of thought when it comes to the diagnosis and treatment of Lyme disease.

The diagnosis and treatment of this illness are contentious points that divides many healthcare professionals. As a result, two philosophies have emerged on how to diagnose and treat this disease–the IDSA and ILADS. The IDSA maintains a strict adherence to their guidelines that those who test positive for the illness should undergo antibiotic therapy. On the other hand, ILADS believes that due to inadequate testing, a clinician’s clinical judgment can assess who needs to be treated and with what means. While the IDSA has expressed concern regarding the overuse of antibiotics, ILADS believes the decision on how to treat patients should be based on factors such as the risks to patients, their quality of life, and financial costs. It should be noted that the ILADS treatment guidelines are the only guidelines currently listed on the National Guideline Clearinghouse (NGC), a public database of evidence-based treatment guidelines for healthcare professionals and insurance companies.

In conclusion, the more information you have regarding signs, symptoms, and treatment options for Lyme disease and associated tick-borne infections, the more you can advocate in the best interest of your patients on this controversial issue.

Jennifer Lelwica Buttaccio

Jenny Lelwica Buttaccio, OTR/L, is a Chicago-based, freelance lifestyle writer, licensed occupational therapist, and certified Pilates instructor. Her expertise is in health, wellness, fitness, and chronic illness management.

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