Physical Therapist Recognition and Referral of Individuals With Suspected Lyme Disease
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PTJ: Physical Therapy & Rehabilitation Journal | Physical Therapy, 2021;101:1–8
DOI: 10.1093/ptj/pzab128
Advance access publication date May 17, 2021
Perspective
Physical Therapist Recognition and Referral of
Individuals With Suspected Lyme Disease
Jennifer Shea, PT, ATC-R1,*
1 Retired Adjunct Faculty, Physical Therapy Department, Springfield College, 263 Alden Street, Springfield, MA 01109 USA
*Address all correspondence to Ms Shea at: pshea4@comcast.net
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Abstract
The most commonly reported vector-borne and tick-borne disease in the United States is Lyme disease. Individuals with Lyme
disease may present with a wide array of symptoms with resultant musculoskeletal, neurological, and cardiac manifestations
that may cause them to seek physical therapist services. The symptoms may develop insidiously and with a variable
presentation among individuals. Many persons with Lyme disease do not recall a tick bite or present with an erythema
migrans rash, which is considered pathognomonic for the disease. Even if they do, they may fail to associate either with
their symptoms, making the diagnosis elusive. It is important to diagnose individuals early in the disease process when
antibiotic treatment is most likely to be successful. Physical therapists are in a unique position to recognize the possibility
that individuals may have Lyme disease and refer them to another practitioner when appropriate. The purpose of this article
is to (1) present an overview of the etiology, incidence, and clinical manifestations of Lyme disease, (2) review evaluation
findings that should raise the index of suspicion for Lyme disease, (3) discuss the use of an empirically validated tool for
differentiating those with Lyme disease from healthy individuals, (4) discuss the current state of diagnostic testing, and (5)
review options for diagnosis and treatment available to individuals for whom referral is recommended.
Keywords: Decision Making: Clinical, Lyme Disease, Referral and Consultation
Received: August 23, 2020. Revised: February 14, 2021. Accepted: April 18, 2021
© The Author(s) 2021. Published by Oxford University Press on behalf of the American Physical Therapy Association.
This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommo
ns.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is
properly cited. For commercial re-use, please contact journals.permissions@oup.com2 Lyme Disease Recognition and Referral
Introduction point of infection to infect any organ or tissue,15,18 which may
The Guide to Physical Therapist Practice1 states that “As clin- result in a broad range of symptoms.18 Borrelia are obligate
icians, physical therapists engage in an examination process parasites and must obtain the substances they need to live
that includes taking the history including a review of systems, from their hosts, most of which can be found in collagen.19
conducting a systems review, and performing tests and mea- As a result, B. burgdorferi bacteria prefer to reside in collagen-
sures to identify potential and existing problems. To establish rich tissues such as skin, brain, muscle (including the heart),
diagnoses, prognoses, and plans of care, physical therapists joints, and eyes.20 They also have a preference for myelin.20
perform evaluations, synthesizing the examination data and Borrelia spp. are known to manipulate the human immune
determining whether the problems to be addressed are within system in several ways to perpetuate their own survival.
the scope of physical therapist practice or whether a referral The modulation of the immune response by the bacteria
to another health care provider is indicated.” As an ongoing can suppress antibody production while increasing inflam-
process, the physical therapist must decide whether to treat mation.20 Inflammation assists in breaking down tissues to
the individual, refer the individual, or do both.2 This requires make nutrients available for bacterial growth.20 Most of the
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that the physical therapist recognize yellow and red flags resulting symptoms are due to inflammation,20 although the
in the individual’s history, medical screening, and physical breakdown of tissues also gives rise to symptoms.19 Some
examination that might indicate the presence of infection or genetically predisposed individuals develop an autoimmune
disease. According to the United States Centers for Disease response during this inflammatory process due to a cross-
Control and Prevention (CDC), Lyme disease is the most reaction between borrelia-specific antibodies and their own
commonly reported vector-borne disease in the United States.3 neuronal antigens.21 Because the internal terrain of each host
Individuals with undiagnosed Lyme disease may seek or be is different, B. burgdorferi will manifest itself differently in
referred to physical therapist services due to musculoskele- every individual.20 Known as the “great imitator,”22 Lyme dis-
tal, neurologic, and cardiac impairments. Physical therapists ease can produce a myriad of symptoms mimicking common
should consider Lyme disease as a possible underlying cause illnesses such as chronic fatigue syndrome/systemic exertional
for these impairments. intolerance disease, fibromyalgia, and autoimmune diseases
A variety of pathogens may be transmitted to the human such as rheumatoid arthritis, lupus, multiple sclerosis,21 and
host by the bite of an infected tick. According to the other multi-system illnesses.5,17
CDC, some of the most common tick-borne diseases in the
United States include Lyme disease, babesiosis, ehrlichiosis,
Early Disease Manifestations
Rocky Mountain Spotted Fever, anaplasmosis, Southern
Tick-Associated Rash Illness, Tick-Borne Relapsing Fever, The early stage of Lyme disease may be characterized by the
and tularemia.4 The most commonly reported tick-borne appearance of an erythema migrans (EM) rash and a viral-
disease in the United States is Lyme disease.4 While much like syndrome.14 The EM rash, which is not always present,
this article will focus on Lyme disease, it is not unusual for is an expanding red rash that develops at the site of the
individuals with Lyme disease to be infected with other tick- bite during the early stage after a delay of 3 to 30 days
borne pathogens, which may have varying manifestations.5,6 (average 7 days)13 or at sites remote from the initial bite
Most cases of Lyme disease in the United States are caused once dissemination has occurred.15 The incidence of EM
by the bacterial species Borrelia burgdorferi (B. burgdorferi),7 rash varies widely in the literature, ranging from 27% to
which is transmitted by the bite of an infected blacklegged 80%.13,23,24 The appearance of the rash can be variable, with
tick.8 The blacklegged tick or deer tick (Ixodes scapularis) the classic “bull’s-eye” appearance being present in fewer than
is responsible for disease transmission in the northeastern, 20% of cases.17 The symptoms associated with the viral-like
mid-Atlantic, and north-central United States, and the western syndrome may include fever, chills, headache, fatigue, muscle
blacklegged tick (Ixodes pacificus) spreads the disease on and joint aches, swollen lymph nodes,13 neck stiffness,25 and
the Pacific Coast.8 The CDC estimates that approximately anorexia.25 Dysesthesia as well as facial nerve dysfunction
476,000 Americans are diagnosed and treated for Lyme dis- may also be present at this stage.17
ease annually.9,10 Although most reported cases of Lyme
disease occur in the Northeast, mid-Atlantic, and upper Mid-
west regions,3 the geographic distribution of high risk areas Musculoskeletal Manifestations
is expanding.11 A 2018 report by Quest Diagnostics shows B. burgdorferi are capable of drilling into joint cartilage20
that Lyme disease has been detected in all 50 states and in and are known to cause damage to collagen and elastic
Washington, DC.12 fibers.26 Arthralgias, myalgias, and migrating polyathralgias
Untreated Lyme disease can produce an array of symptoms are common features of early Lyme disease.27 Although arthri-
based on the stage of infection.13 Three stages of the dis- tis typically does not occur until about 6 months after infec-
ease are generally described,14–16 including an early localized tion, it can occur as early as 4 days after initial infection.15
stage occurring days to 1 month after the tick bite, an early Arthritis is the most common manifestation of late-stage Lyme
disseminated stage occurring weeks to months after the tick disease in the United States,28 and about 60% of untreated
bite, and a late or chronic stage occurring months to years individuals will develop arthritis.29 Joint swelling may occur
after the tick bite.14 The features of each stage may overlap, in the absence of pain. Joint pain and swelling may resolve or
and some individuals will present with later features without recur intermittently or become chronic and persistent.15 The
having presented with earlier ones.16 Common symptoms of typical presentation is intermittent attacks of monoarticular
Lyme disease17 are listed in the Figure. or oligoarticular arthritis.29 The large joints are often affected,
Once inside the body, B. burgdorferi is able to disseminate especially the knees, but the ankle, shoulder, elbow, wrist, tem-
quickly. A highly motile spirochete, it is capable of dissemi- poromandibular,15,29 hip, and sternoclavicular29 joints may
nating through blood vessels or the lymphatic system from the be involved as well. Smaller joints can be affected although lessShea 3
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Figure. Common symptoms of Lyme disease.17 The presence of erythema migrans (EM) rash is a “classic” indicator of Lyme disease, but the
appearance of EM rashes is highly variable. Most EM rashes are solid colored, ranging from a faint pink to a deep red. Less than 20% of all EMs have
the classic “bull’s-eye” appearance. An EM may be missed if not specifically sought on exam, as they are typically asymptomatic and may be unnoticed
or unrecognized by the patient. Reproduced with permission from the International Lyme and Associated Diseases Society (www.ilads.org).
frequently.29 Involvement of periarticular sites has also been meningitis, cranial neuropathy, and radiculoneuritis.7 Facial
reported.29 In some cases, subarticular cysts, loss of cartilage, nerve palsy is the most commonly reported neurological
bone erosion, and permanent joint disability have occurred.29 sign.15 Radiculoneuritis is a common peripheral nerve
manifestation that can mimic a mechanical radiculopathy
such as sciatica with sensory, motor, and/or reflex changes
Neurologic Manifestations occurring in one or several dermatomes.7 A cluster of spinal
B. burgdorferi also has an affinity for the nervous system.21 nerves can be affected as is the case with brachial7,15 or
Neurologic disease, occurring weeks to months after the tick lumbosacral plexopathies.7 Autonomic neuropathy can also
bite, occurs in about 10% to 15% of untreated individuals in result, affecting organ function possibly causing constipation,
the United States.30 difficulty with urination, and problems with blood pressure
Refer to the Table for a summary of the neurologic and heart rate control.21 Postural orthostatic tachycardia
manifestations of Lyme disease listed according to the part syndrome, a form of autonomic dysfunction in which
of the nervous system they affect. The classic triad associated low blood pressure occurs in standing with compen-
with acute, early neurologic Lyme disease is lymphocytic satory tachycardia, is another possible manifestation.15,214 Lyme Disease Recognition and Referral
Table. Neurologic Manifestations of Lyme Disease
Condition Manifestations
Peripheral nervous system
Cranial neuritis Facial nerve palsy, hearing loss, optic neuritis with visual changes,15,21 hyperacusis, pain behind the ear, altered
taste, double vision, facial pain, tinnitus,15 eye movement disorders, and vestibulitis21
Radiculoneuritis Motor and sensory changes including pain, numbness, and tingling on one or both sides of the body7,15 ; may
mimic a mechanical radiculopathy7
Bannwarth Triad of meningitis, cranial nerve palsy, and intensely painful sensory radiculitis15,21
syndrome
Other Mononeuropathy,15,21 mononeuropathy multiplex,7,15,21 polyneuropathy,15,21 and autonomic neuropathy21
as well as brachial7,15 and lumbar plexopathies7 have been reported
Central nervous system
Encephalitis Sleepiness, decreased levels of consciousness, abnormal mood, confusion, cognitive changes, personality and
behavioral changes, hallucinations, and seizures15
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Meningitis Headaches, neck stiffness, nausea, vomiting, light sensitivity, or fever15
Lyme Confusion and cognitive impairment; somnolence; severe psychiatric symptoms such as hallucinations,
encephalomyelitis paranoia, and mania; paraparesis with sensory loss; abnormal body movements; impaired coordination; and
seizures15
Pseudotumor Headache followed by blurred and double vision, and, if untreated, optic nerve compression and visual loss can
cerebri result; more often reported in children and young adults15
Encephalopathy Cognitive deficits, mild depressive symptoms, somnolence, headache, irritability, hearing changes, and possibly
neuropathic symptoms occurring in the later stages of the disease15
Neuropsychiatric symptoms are also known to occur and may able to recognize signs and symptoms of systemic disease that
present as changes with cognition,17,21,31 and mood,17,21 can mimic musculoskeletal, neuromuscular, and/or cardiac
depression,17,21,31 and anxiety disorders.17,31 dysfunction that should prompt more specific screening, ques-
tions, and tests. Even with proper screening, some conditions
Cardiac Manifestations may be missed because they are early in their presentation
and are not yet recognizable; therefore, screening should be
Cardiac involvement, if present, may occur weeks to months
an ongoing process.2
after the onset of infection32 and may occur asymptomat-
As a result of the varied manifestations of Lyme disease,
ically32,33 or can become so severe as to be life threaten-
infected persons may experience any number of impairments,
ing.32,34,35 Lyme carditis occurs in about 1 of 100 cases
activity limitations, and participation restrictions that may
of Lyme disease reported to the CDC according to national
cause them to seek physical therapist services. Given the pref-
surveillance data collected between 2008 and 2018.35 Ciesiel-
erence of B. burgdorferi for collagen and nerve tissue,20,21 it
ski et al36 found cardiac manifestations to be present in 10%
seems likely that individuals infected with Lyme disease could
of individuals, which included palpitations, conduction abnor-
seek physical therapist services to address impairments related
malities, myocarditis, left ventricular failure, and pericarditis.
to the musculoskeletal, neuromuscular, and cardiovascular
Woolf et al found the incidence of electrocardiographic abnor-
systems. Impairments associated with the musculoskeletal
malities to be 29% in pediatric individuals with definite Lyme
system might include decreased joint mobility, motor function,
disease.33 The most common clinical feature of Lyme carditis
muscle performance, and range of motion. Impairments asso-
is atrioventricular conduction block due to dysfunction of
ciated with the neuromuscular system might include decreased
the conduction system,37,38 but decreased cardiac contrac-
or altered motor function and/or sensory integrity associated
tility due to myopericarditis can occur as well.37 Additional
with the central or peripheral nervous systems, decreased
cardiac abnormalities resulting in EKG changes have also
motor control, loss of balance, gait disturbance, and, in the
been reported.38,39 Symptoms of Lyme carditis include light-
case of children, impaired neuromotor development. Due to
headedness, fainting, shortness of breath, heart palpitations,
the possibility of Lyme carditis, autonomic nervous system
and chest pain.35,37 According to the CDC, 11 cases of fatal
dysfunction, and the general deconditioning associated with
Lyme carditis were reported worldwide between 1985 and
the disease, individuals might seek services for impairments
2019.35
related to the cardiovascular system, including decreased aero-
bic capacity and endurance. Because physical therapists often
Evaluation see individuals frequently and at regular intervals, they are
The vision statement for the physical therapy profession is that likely to be in a good position to recognize the possibility that
of transforming society by optimizing movement to improve a individual might have Lyme disease.
the human experience.40 In working toward that vision and Examination should begin with a history. Individuals may
employing a movement dysfunction approach for physical report an insidious onset or unknown cause for their com-
therapy diagnosis, it is the responsibility of the physical ther- plaints such as joint pain in the absence of trauma. It is
apist to be certain that individuals/clients are appropriate important to note that fewer than 30% of those infected
candidates for physical therapist services and to determine with Lyme disease in the United States remember a tick
when referral to another health care practitioner is required. bite,41 and even those who remember one may not asso-
The diagnostic process involves evaluation of information ciate the bite with their symptoms. Some individuals may be
obtained from the examination, including history, systems asymptomatic in the early stage of the disease.16,42 In some
review, tests, and measures. The physical therapist must be cases, the asymptomatic carrier state can last indefinitely;Shea 5
symptoms associated with chronic Lyme disease develop grad- individual may improve but then get worse, demonstrating
ually if immune function falters for any reason.20 These a gradual, progressive, or cyclical pattern of symptoms.2
factors may make it even more difficult for individuals to Additional signs and symptoms may develop, or the individual
make the association. might become more willing to disclose them during the course
Similarly, individuals may not associate the EM rash with of treatment.2
their symptoms. Not all infected individuals will develop a
rash, and those that do may miss it because the rash is Horowitz Multiple Systemic Infectious Disease
generally asymptomatic.17 It can also be missed when hidden Syndrome Questionnaire
from view in areas such as the hairline and scalp or on Once the physical therapist suspects the possibility that the
dark-skinned individuals.43 If the rash is visible, it may vary individual may have Lyme disease, the Horowitz Multiple Sys-
in appearance from the classic bull’s eye,13,17,43 most often temic Infectious Disease Syndrome Questionnaire (HMQ)46
presenting as an evenly red or reddish-blue lesion lacking the can be administered to identify whether the individual is likely
ring-within-a-ring pattern.43 Multiple skin lesions can occur to have Lyme disease. Horowitz defines Multiple Systemic
in the disseminated phase.15,21,43 Rashes that differ from the
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Infectious Disease Syndrome as a syndrome involving Lyme
classic bull’s-eye appearance may go unrecognized and be symptoms that are worsened by additional tick-borne co-
mistaken for something else.19,21 infections, such as babesiosis and Bartonella, as well as by the
Symptoms in the early phase tend to be nonspecific and presence of other multiple overlapping factors. Some of the
viral-like,42 so individuals may fail to report these consti- abnormalities are caused by Lyme disease and co-infections
tutional symptoms, believing that they are unrelated. They and others are not, but all factors affect the clinical course.21
may fail to disclose information about cognitive changes and Horowitz developed the questionnaire by including “a gestalt
behavioral or psychiatric manifestations for the same reason of symptoms” that he found to be associated with Lyme
or due to embarrassment. As a matter of routine practice, disease in his clinical practice, items related to the likelihood of
physical therapists should ask individuals about any signs and exposure to Lyme disease, and items related to overall physical
symptoms they are experiencing regardless of whether the and mental health.44
individual believes them to be related to the current problem.2 The questionnaire is comprised of 4 sections. Section 1
Red flags noted on examination that would warrant further consists of a 38-point symptom checklist, including those that
screening and testing could include the presence of symptoms are most likely to be experienced by individuals with Lyme
that do not fit the expected mechanical or neuromuscular disease in clinical practice. Section 2, referred to as the Lyme
pattern2 such that the therapist is unable to alter (produce, incidence scale, consists of 10 items or incidents related to
worsen, reduce, or abolish) the symptoms by mechanical the likelihood of having Lyme disease. Items about migratory
means. Symptoms that are not relieved by rest or positional symptoms are also included. Section 3 contains 2 questions
change are a red flag as are symptoms that seem out of about overall physical and mental health. Section 4 creates
proportion to the injury or trauma or that persist beyond a score based on 5 common Lyme symptoms that Horowitz
the expected time frame.2 Lyme radiculoneuritis, for exam- observed to be linked to a higher probability of having Lyme
ple, should be considered in individuals in Lyme endemic disease. Each section is scored separately. The scores are then
areas who present with severe radicular pain in the trunk added together to create an overall HMQ score, which indi-
or limb without apparent mechanical cause.7 One of the cates the “probability as to whether an individual may suffer
hallmark features of Lyme disease is the migratory nature of from Lyme disease and associated tick-borne disorders.”44
the symptoms.44 This pattern may occasionally occur with A 2017 study44 supported the use of the HMQ as a valid,
other illnesses involving transient migratory arthritis,45 but, efficient, and low-cost screening tool for medical practitioners
according to Horowitz, “only Lyme disease presents with to decide if additional testing is warranted to distinguish
persistent migratory pain, especially migratory nerve pain and between Lyme disease and other illnesses. The results of
paresthesias, which are not primary characteristics of these the study showed that the HMQ accurately differentiated
other illnesses.”44 Symptoms of Lyme disease may also be between individuals with Lyme disease and healthy individ-
intermittent and change frequently.42 Individuals may report uals.44 It can be completed independently by individuals or
unprovoked pain that may interfere with sleep.17 The pres- with the oversight of the physical therapist if needed.
ence of constitutional signs and symptoms such as headache,
fatigue, fever, sweats, chills, unexplained weight change (loss
or gain), swollen glands, sore throat,21 and malaise17 should Referral
prompt concern regarding the possibility of systemic illness.2 Once the physical therapist has determined based on
Individuals with postural orthostatic tachycardia syndrome the HMQ score that referral to a qualified health care
may present with low blood pressure in standing and/or practitioner is recommended, this option should be discussed
changing position with associated tachycardia, resulting in with the individual. Consistent with the emphasis on patient-
symptoms including dizziness, fatigue, and exercise intoler- centered care as articulated by the Institute of Medicine,47 the
ance.21 Therapists should always be alert to any pattern that physical therapist should educate the individual and engage
may suggest a viscerogenic or systemic cause for symptoms,2 in shared decision making taking into account individual
and the presence of a cluster of clinical symptoms associated preferences, needs, and values. The steps taken to arrive at
with Lyme disease is certainly an important finding.44 the recommendation for referral along with the underlying
Additional factors may arise during the course of treatment rationale and potential consequences of taking and refusing
that warrant further screening and may indicate the possibility action should be explained in terms understandable to the
of Lyme disease in addition to other illnesses. An individual individual.48 The individual should also be made aware that
who does not improve with intervention is always cause for there are 2 sets of medical guidelines for the treatment of
concern.2 In response to physical therapist intervention, the Lyme disease and be encouraged to seek further information6 Lyme Disease Recognition and Referral
in order to make an informed choice as to which health care between 2004 and 2016.65 The musculoskeletal, neurological,
provider to see for further evaluation. and cardiac manifestations of Lyme disease may cause infected
persons to seek physical therapist services. Physical thera-
Diagnostic Testing pists often see individuals frequently and at regular intervals,
positioning them optimally within the health care system to
As noted in the 2018 Report to Congress by the Tick-Borne recognize individuals with undiagnosed Lyme disease. The
Disease Working Group, an advisory body convened by the HMQ can be a useful tool to assist with the recognition and
Department of Health and Human Services, diagnosing Lyme referral of individuals with suspected tick-borne disease in the
disease using currently available serologic tests is challeng- face of this growing threat.
ing.43 Individuals with an EM rash are considered to be
infected without the need for a confirmatory test. Those
who do not have an EM rash with a history of exposure
Suggestions for Future Research
and symptoms consistent with the disease are instructed to The medical management of acute Lyme disease typically
undergo the testing as recommended by the CDC.49 The involves antibiotic therapy.63,64 The medical management for
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current recommendation is to test blood for the presence of those with persistent symptoms attributed to Lyme disease
antibodies to Lyme disease bacteria using 2 steps. The first may also include antibiotics in addition to a wide variety
step uses a testing procedure called enzyme immunoassay or of interventions that target multiple overlapping contributing
immunofluorescence assay. If the result of the first test is factors.21 Individuals undergoing treatment for Lyme disease
negative, no further testing is recommended. If the first test are generally advised to engage in physical activity to toler-
is positive, or indeterminate (sometimes called “equivocal”), ance. The best practices for the physical therapist management
the second step should be performed. The second step uses of individuals with Lyme disease are not well described in
a testing procedure called an immunoblot, more commonly the literature. Research is needed to examine the efficacy of
known as the Western blot, or an enzyme immunoassay.50,51 physical therapist interventions directed toward improving
The overall test result is considered positive only when the first the quality of life for those affected by this disease.
test is positive (or equivocal) and the second test is positive (or
for some tests equivocal).51 Acknowledgments
The 2-tiered testing method recommended by the CDC The author wishes to thank the following people for consultation and
has been shown to be problematic.15,52,53 False seropositivity review of the manuscript: Holly Ahern, MS, MT(ASCP), Associate
can occur especially in the presence of other diseases.15 False Professor of Microbiology, SUNY Adirondack; David J. Miller, PT, PhD,
seronegativity has been extensively reported in the litera- Professor Emeritus, Springfield College; and Julia Chevan, PT, PhD,
ture.53–57 Research indicates that the specificity of the 2-tiered MPH, OCS, Springfield College Department of Physical Therapy Chair.
test is approximately 99%58,59 and the sensitivity ranges from Special thanks to Richard I. Horowitz, MD, for his generosity in sharing
53.7% to 57.6%.58–60 There are other direct and indirect tests his work.
available, but current Lyme testing lacks adequate sensitivity,
which may leave many genuine cases underdiagnosed.58 The Funding
diagnosis of Lyme disease should be based on clinical signs There are no funders to report for this study.
and symptoms and supported by laboratory tests.17,21,61,62
Disclosures
Medical Treatment Guidelines The author completed the ICMJE Form for Disclosure of Potential
Medical opinion about the diagnosis and treatment of TBD is Conflicts of Interest and reported no conflicts of interest.
divided into 2 schools of thought, each of which is reflected
in a different set of guidelines. One set of guidelines has References
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