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Clinical and Case Study Article

The nurse practitioner's role in addressing chronic sequelae of Lyme disease as a climate change related disease

Nicholas, Patrice DNSc, DHL (Hon), MPH, MS, RN, NP-C, FAAN (Distinguished Teaching Professor, Director, Munn Nurse Faculty Scholar, Codirector for Policy and Advocacy)1,2,3,4; Evans, Linda A. PhD, RN (Adjunct Faculty)5; Albert, Marisa MSN, RN (Family Nurse Practitioner Student)4; Kelly, Debra DNP, RN (Assistant Professor and Track Coordinator)4; Michelson, Naomi (Member, Student)1,6

Author Information
Journal of the American Association of Nurse Practitioners: March 2022 - Volume 34 - Issue 3 - p 579-585
doi: 10.1097/JXX.0000000000000670
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Abstract

Introduction

Climate change is among the most urgent global health challenges that results in deleterious health consequences. The Centers for Disease Control and Prevention (CDC, 2020) addresses the critical health impacts of climate change that include air quality issues with increased respiratory and cardiac sequelae, heat-stress–related illnesses, water and food supply impacts, environmental degradation, severe weather, wildfires, increased velocity of hurricanes, mental health consequences related to disasters, forced migration and civil conflict related to heat and lack of water access, and vector-borne diseases.

Overview of climate change

Climate change is an emerging global health problem and responsible for a host of deleterious health consequences. In our climate-changing world, there are extensive impacts that result in complex health challenges for patients, families, communities, and populations. Among these challenges are heat stress and heat stroke for vulnerable populations including women and children—particularly pregnant women, older adults, those with chronic illnesses, and the occupational health challenges of those who work outdoors. The increase in flooding due to sea level rise and hurricane velocity is associated with death, disability, and mental health sequelae (Nicholas et al., 2020). Air quality issues from greenhouse gas emissions affect respiratory and cardiac health. In addition, aeroallergens from increased pollen activity in our warming climates lead to extended pollen seasons and respiratory challenges. There are also food and waterborne illnesses due to climate change that are associated with food and water insecurity. Notably higher ambient temperatures are associated with diseases carried by vectors that include malaria, dengue, encephalitis, hantavirus, Rift Valley fever, chikungunya, West Nile virus, and Lyme disease (CDC, 2019).

Impact of climate change on Lyme disease prevalence

This article focuses on the chronic consequences of Lyme disease, a vector-borne illness, and the role of the nurse practitioner in addressing the associated health challenges. It is important to note that Lyme disease prevalence and the emergence of chronic consequences of Lyme disease are directly related to our changing climate. Dumic and Severnini (2018) suggest that Lyme disease is the most commonly diagnosed tick-borne illness in the United States and results from the bacteria Borrelia burgdorferi carried by blacklegged ticks, or Ixodes scapularis. The rate of Lyme disease is increasing due to increased tick survival rates. Specifically, increased tick survival is occurring as temperature and humidity increases related to climate change. Following global temperature projections, it has been predicted that individuals living in North America will experience a 20% increase in Lyme disease incidence over the next decades (Dumic & Severnini, 2018). According to the Environmental Protection Agency (EPA) (2016), ticks are most active in an environment with a temperature of 45°F and at least 85% humidity. As climate change continues to increase, temperatures and humidity throughout areas of the United States are appropriate environments for tick activity. Our climate-changing world increases the likelihood that Lyme disease will increase because ticks are increasing their range of exposure and increases the risk of exposure to humans (EPA, 2016). Additional tick-borne illnesses include anaplasmosis/ehrlichiosis, spotted fever rickettsiosis, and babesiosis (CDC, 2019). According to the CDC (2021), the United States had 22,527 reported cases of tick-borne illnesses in 2004; in 2018, 47,743 cases were reported. In 2017, a record number of 59,349 cases of tick-borne illnesses were reported (CDC, 2021). Lyme disease has a range of acute and potentially chronic manifestations, which can become debilitating for patients. With increasing rates of Lyme disease and other tick-borne illnesses, it is critical for advanced practice nurses to be able to effectively recognize, treat, and compassionately care for patients to manage this illness. It is also important to note that the CDC is tracking the increased prevalence of Lyme disease and associated chronic sequelae (CDC, 2021).

Background of Lyme disease: Epidemiology as a climate consequence

The world has warmed over the last 150 years and global temperatures continue to rise (Haines & Ebi, 2019; Walsh et al., 2014). The impact of climate change on vector-borne diseases is well documented. Climatic factors including warmer, more humid, environmental conditions, and shifts in precipitation patterns suggest that the incidence of vector-borne diseases has expanded in geographic mapping, have increased the survival rate of ticks carrying the Borrelia burgdorferi spirochete, and have lengthened the seasons when outside activities are more common thereby increasing risk to human health (Bouchard et al., 2019).

Serologic testing for antibodies against the Borrelia burgdorferi bacterium will confirm the diagnosis of Lyme disease; however, presence of the classic erythema migrans (EM) skin rash at the site of a tick bite is regarded as presumptive infection and warrants treatment (Chan, 2021). Despite the common and successful treatment of a prescribed course of antibiotics for Lyme disease, some patients will go on to develop long-term pain, fatigue, cognitive changes (CDC, 2020) or neuropathy (Chan, 2021) and are therefore diagnosed with chronic Lyme disease known as posttreatment Lyme disease syndrome (PTLDS).

There have been no definitive, evidence-based treatments for PTLDS and resorting to repeated, long-term dosing of antibiotics, or even more aggressive immunoglobulin therapy to treat continued symptoms of Lyme disease may lead to serious and sometimes fatal complications (CDC, 2020). These serious complications have included sepsis secondary to peripheral and/or central intravenous line infections inserted for long-term antibiotic infusion, C. difficile colitis (Marzec et al., 2017), or antibiotic toxicity (Chan, 2021). It is important that because the resolution of symptoms may take longer than expected after an adequate course of antibiotics, there is a risk of continued yet unneeded treatment that may lead to unintended consequences.

The sequelae of chronic Lyme disease can be debilitating for patients and challenging for their health care providers due to their elusive nature and conflicting presentation. Conversely, the risk of premature diagnostic closure may lead to delayed diagnosis of other debilitating neurological diseases (Marzec et al., 2017).

The authors systematically reviewed the literature to assure that articles relevant to the advanced practice nurse's role, diagnosis and management of Lyme disease, and patient experiences with symptoms related to PTLDS were examined.

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Clinical Case Study
This case takes place in early August in the northeastern United States. Lucille is a 48-year-old African American woman who lives in an apartment complex in a heavily wooded area in suburban Boston. The urgent care clinic is located in her local town where she has been seen twice previously with a “bulls-eye” rash (consistent with erythema migrans) located on her right upper thigh. First visit was two and a half months ago. On this visit, Lucille arrives to the clinic complaining of lower extremity pain and “painful nerves” and joints. She also reports having difficulty sleeping, although feeling drowsy, difficulty concentrating, and irritability. The nurse practitioner examines Lucille and finds her to appear to be well nourished with complaints of difficulty walking because her feet and legs are painful and numb and she reports that her joints are sore.
Past medical history: Reports no health problems.
Social history: Lucille lives alone in an apartment complex in a heavily wooded area. She works as an administrative assistant for the public schools in her town. Her husband of 20 years died of lung cancer 6 years ago. She has no children. Other than family, she has limited social interaction outside her work environment.
Family history: Mother had hypertension, history of a myocardial infarction. Father had cardiovascular disease and died from complications of stroke.
Medications: None. Had a 21-day course of doxycycline 100 mg twice daily for treatment of acute Lyme disease 8 weeks ago.
Allergies: No known allergies
Objective
Vital signs: Temperature 98.6 F PO, HR 84 regular, BP 110/70 mm Hg, RR 20, oxygen saturation 99% on room air.
Systems approach listed by system:
General: Lucille is a 48-year-old African American woman; height 5 ft 1 inch; weight 120 lbs; no obvious signs of injury or distress noted. She is awake, alert, and able to respond to commands.
HEENT: HEENT examination within normal limits. No nodes or masses palpable.
Neurological: Oriented to person, place, and time; speech clear; pupils are equal and reactive to light and accommodation; no obvious focal deficits noted. No acute neurological changes on physical examination (absence of lethargy, confusion, speech coherent, able to follow all commands, normal neurological findings on physical examination). Peripheral examination yields diffuse paresthesias from knees to feet/toes.
Cardiac: Normal S1, S2; no murmurs or bruits noted. Radial and distal pulses are 3+, equal bilaterally; no peripheral edema noted.
Respiratory: Lungs are clear bilaterally; in no apparent distress; no nasal flaring or use of accessory muscles noted.
Abdominal/GI: Abdomen soft, non-tender; bowel sounds present in all 4 quadrants; no pain; no masses; no bruits noted.
Musculoskeletal: Gait normal. Diffuse swelling of right knee joint noted with mild erythema and circumference 1 cm greater than left knee.
Skin/dermatologic: Deeply pigmented skin with no evidence of rash. The skin is warm, dry, and intact with exception of right knee joint with swelling and erythema present.
What do you suspect based on these findings? Differential diagnoses include:
Chronic Lyme disease (not fully treated) New onset of rheumatoid arthritis
Posttreatment Lyme disease syndrome Gout or pseudogout
Peripheral neuropathy syndrome Fibromyalgia

Approach to the health history

For a suspected case of acute Lyme disease, the nurse practitioner can begin the health history by asking the patient if they reside in or have traveled to an area of high tick prevalence. Additional questions such as occupation, outdoor hobbies, or pets in the home with the potential to carry ticks can be important questions to assess possible tick exposure. Review with the patient of the onset, duration, and alleviating and aggravating factors of their symptoms is critical. Reviewing past medical history, family history, allergies, medication use, and close contacts with similar symptoms are important factors that can contribute to a diagnosis (Cash & Glass, 2017). A hallmark presenting symptom seen in 70–80% of patient with Lyme disease is EM, noted to develop between 3 and 30 days after a tick bite (Saccomano & Hrelic, 2018). Erythema migrans is a nonpainful and nonpruritic 5- 6-inch erythematous patch on the skin appearing in the area of the tick's bite, usually in a bulls-eye shape. Early symptoms of Lyme disease can be seen 7–14 days after tick exposure but may take up to 30 days in some cases (Saccomano & Hrelic, 2018). The nurse practitioner should review with the patient for any possible flu-like symptoms that may be early Lyme disease manifestations such as fever, chills, lymphadenopathy, myalgia, fatigue, and arthralgia (Saccomano & Hrelic, 2018).

If untreated in this initial stage, Lyme disease can progress into what is known as the early disseminated stage of Lyme disease (Saccomano & Hrelic, 2018). If a patient presents to a clinic at this stage, they may report symptoms of neurologic involvement. Asking about symptoms of headache, photophobia, signs of Bell palsy, and mild encephalopathy are important to review with patients in this stage. Additionally, 5–10% of patients may exhibit cardiac involvement in the form of transient heart block (Cash & Glass, 2017).

Continued manifestations of Lyme disease, known as PTLDS, can occur in patients, with an estimated prevalence of 10% (Ścieszka et al., 2015). Wormser et al. (2006) developed the following proposed criteria for PTLDS:

  • A patient with a documented episode of early or late Lyme disease fulfilling the case definition of the CDC;
  • After recommended treatment of the episode of Lyme disease, there is resolution or stabilization of the objective manifestation(s) of Lyme disease;
  • Onset of any of the following subjective symptoms within 6 months of the diagnosis of Lyme disease and persistence of continuous or relapsing symptoms for at least a 6-month period after completion of antibiotic therapy: fatigue, widespread musculoskeletal pain, complaints of cognitive difficulties, and sleep disturbances (Ścieszka et al., 2015, pp. 46–48).

A common symptom seen in 60% of patients with PTLDS is arthritis, most commonly in the knees (Cash & Glass, 2017). Neurologic symptoms may continue into this late disease stage, so the nurse practitioner should ask about memory loss and other neurologic deficits (Cash & Glass, 2017). It is important to note that there are four predominant categories of disease associated with PTLDS (Figure 1).

F1
Figure 1.:
Four predominant categories of disease associated with chronic Lyme disease/post-Lyme disease syndrome (Feder et al., 2007).

Approach to physical examination and diagnostic data

The physical examination in addressing PTLDS is similar to an acute presentation of Lyme disease; however, PTLDS should include a focus on neurological symptoms with neurocognitive symptoms, including signs and symptoms of meningitis, fatigue, or persistent pain—all of which may occur with or without clinical or serological evidence of previous early or late Lyme disease (Feder et al., 2007). In addition, a complete musculoskeletal examination for evaluation of joint pain and arthralgias is necessary. Lack of energy and diffuse pain are hallmark symptoms that frequently occur concomitantly with the objective physical examination findings of limitations in joint movement and range of motion limitations due to joint pain. Laboratory tests were ordered to augment physical examination findings. These include serologic testing as the primary means of laboratory diagnosis of Lyme disease. Current recommendations include using a sensitive enzyme immunoassay (EIA) or immunofluorescence assay, followed by a Western immunoblot assay for specimens yielding positive or equivocal results. In 2019, the Food and Drug Administration cleared several Lyme disease serologic assays with new indications for use, allowing for an EIA rather than Western immunoblot assay as the second test in a Lyme disease testing algorithm (CDC, 2020).

Currently, the CDC recommends a two-step testing process for Lyme disease, which health care providers should adopt. Both steps are required and can be done using the same blood sample. If this first blood test is negative, no further testing is recommended. If the first step is positive or indeterminate, the second blood test should be performed. The overall result is positive only when the first test is positive or considered equivocal and the second test is positive (or for some tests equivocal).

Of note, the CDC indicates the following:

  • Most Lyme disease tests are designed to detect antibodies made by the body in response to infection.
  • Antibodies can take several weeks to develop, so patients may test negative if infected only recently.
  • Antibodies normally persist in the blood for months or even years after the infection is gone; therefore, the test cannot be used to determine cure.
  • Infection with other diseases, including some tick-borne diseases, or some viral, bacterial, or autoimmune diseases, can result in false-positive test results.
  • Some tests give results for two types of antibody, IgM and IgG. Positive IgM results should be disregarded if the patient has been ill for more than 30 days (CDC, 2020).

Differential diagnoses

Differential diagnoses in this case include persistent Lyme disease indicating continuing presence of Borrelia burgdorferi as evidenced by positive EIA or immunofluorescence assay, followed by a Western immunoblot assay for this specimen, which yielded positive results. As noted in Figure 1, there are four predominant categories of disease associated with chronic Lyme/PTLDS (Feder et al., 2007). Category 1 includes symptoms of unknown cause, with no evidence of Borrelia burgdorferi infection. Category 2 includes a well-defined illness unrelated to B. burgdorferi infection. Category 3 includes symptoms of unknown cause with antibodies against B. burgdorferi but no history of objective clinical findings that are consistent with Lyme disease. Category 4 is related to PTLDS. The clinical case study illustrates the case presentation of an individual with classic symptoms of PTLDS (category 4). Although this case presentation represents a classic PTLDS case, other potential differential diagnoses are infection with another vector-borne illness, early onset of peripheral neuropathy, and arthritis symptoms consistent with rheumatoid arthritis. Other diagnostic tests should be considered to rule out other potential differential diagnoses.

Management

Management of PTLDS is aimed at eradication of persistent presence of B. burgdorferi antibodies. The National Institute of Allergy and Infectious Diseases (NIAID) reported that some patients were treated with 30 days of an intravenous (IV) antibiotic followed by 60 days of an oral antibiotic. Primary treatment was with IV ceftriaxone for symptoms of potential chronic infection. As described previously, for early Lyme disease, a short course of oral antibiotics such as doxycycline or amoxicillin is likely to be curative in the majority of the cases. However, in more complicated cases, Lyme disease can usually be successfully treated with 3–4 weeks of antibiotic therapy (generally doxycycline or amoxicillin). Although the patient in the case study received an appropriate course of initial antibiotic therapy, she has experienced persistent symptoms. It is important to note that results are equivocal on the efficacy of more lengthy courses of antibiotics (CDC, 2020). However, the management of this patient's clinical situation included an additional course of treatment. Further, a study supported by the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health showed that long-term antibiotic use for Lyme disease is not an effective strategy for cognitive improvement. In the NINDS study, researchers studied 37 individuals with well-documented Lyme disease, at least 3 weeks of prior IV antibiotics, a current positive Lyme test (IgG Western blot), and self-reported memory impairment and found the following results. Patients who received either 10 weeks of IV ceftriaxone or IV placebo were examined for clinical improvement using objective memory tests (NIAID, 2018). The NIAID reported that the ceftriaxone group showed a slightly greater improvement at 12 weeks, but at 24 weeks, both the ceftriaxone and the placebo groups had improved similarly from baseline; however, IV ceftriaxone was not an effective strategy for cognitive improvement in these patients. It is clear that recent studies indicate some benefit to prescribing IV antibiotics to benefit patients with severe fatigue related to PTLDS; however, significant adverse events may occur and should be weighed in a cost-benefit analysis by a provider with expertise in PTLDS (NIAID, 2018). In addition, referral to a PTLDS clinic for evaluation by a provider specializing in PTLDS was recommended by the nurse practitioner.

The Nurse Practitioner's holistic lens on caring for the patient with chronic sequelae of Lyme disease

The role of nurse practitioners includes addressing a holistic approach to patient care and education. For patients who are living with chronic symptoms as discussed in this article, it is important to note that a focus on wellness, activities of daily living, managing chronic health challenges such as sleep issues should be integral in the plan of care. The holistic lens of the nurse practitioner should include a unique emphasis on health and well-being. Because nurse practitioners' focus is on health promotion, disease prevention, and health education and counseling, the nurse practitioner can guide the patient with PTLDS and offer patient education about avoiding reinfection with Lyme disease, including covering up with long pants tucked into socks and long-sleeved shirt. Wearing a hat and gloves is also recommended. Avoidance of low shrubs and long grass is also important. Using insect repellent with a 20% or higher DEET concentration is also recommended. Even in areas where Lyme disease is prevalent, it is important to consider tick-proofing one's property. Examining one's own clothing, children's clothing and skin, and monitoring pets for ticks is critical. Also showering immediately on returning from outdoors may remove ticks that have not yet attached to skin. Removal of ticks with tweezers and education about the possibility of reinfection are important to include in the nurse practitioner's plan for patient education. Finally, encouraging patients to complete a full symptom diary and sharing this with the nurse practitioner at subsequent visits with a symptom management approach are key strategies for patient education and follow-up.

Conclusion

Lyme disease is caused by infection with the bacterium Borrelia burgdorferi. Although most cases of Lyme disease can be cured with a 3- to 4-week course of oral antibiotics, patients can sometimes have symptoms of pain, arthralgias, fatigue, or difficulty thinking and cognitive impairment that last for more than 6 months after treatment completion. This syndrome is known as PTLDS and requires careful assessment, physical examination, development of differential diagnoses, and management. It is unclear as to why some patients experience PTLDS; however, experts suggest that Borrelia burgdorferi can trigger an autoimmune response causing symptoms that last months after the infection is eradicated. It is also important to note that autoimmune responses are known to occur following other infections, including campylobacter (Guillain–Barré syndrome), chlamydia (Reiter syndrome), and strep throat (rheumatic heart disease) (CDC, 2020). Other experts hypothesize that PTLDS results from a persistent and complex, yet difficult to detect infection (NIAID, 2020). Finally, some believe that the symptoms of PTLDS are due to other causes unrelated to the patient's Borrelia burgdorferi infection (NIAID, 2020). As noted by NIAID (2020, para 14): “NIH funded studies suggest that long-term outcomes are no better for patients who received additional prolonged antibiotic treatment than for patients who received placebo.” Further, long-term antibiotic treatment for Lyme disease has been associated with serious, sometimes deadly complications (Goodlet & Fairman, 2018). Information from the CDC suggests that patients with PTLDS improve over time, but it can take many months to feel completely well (CDC, (CDC, 2020). Because NIAID (2020) consensus addresses the fact that long-term antibiotic treatment is not effective, collaboration with an expert provider who frequently encounters chronic sequelae of Lyme disease should be considered.

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    Keywords:

    Climate change; global warming; health consequences; Lyme disease; posttreatment Lyme disease syndrome; vector-borne illness

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