Teaching physical therapists when and how to suspect Lyme disease
By Jennifer Shea, PT, ATC-R
I practiced physical therapy for many years prior to becoming ill with Lyme disease and babesiosis. My education included a course in clinical pathology and a unit on infectious disease.
Less than one page in my medical textbooks was devoted to Lyme disease. The text described an acute flu-like illness experienced by individuals following a tick bite.
Key diagnostic features included a bull’s eye rash, facial nerve palsy and a swollen knee. Treatment consisted of a short course of doxycycline. It all seemed pretty straight forward. It wasn’t until I contracted the disease myself that I began to understand its elusive nature.
Unrecognized Lyme disease?
Reflecting back on my career, I recall several patients whom I treated that likely had Lyme disease and/or co-infections. I failed to recognize it at the time.
One patient had been diagnosed with fibromyalgia. As I examined her, she couldn’t tolerate even the lightest touch due to skin sensitivity. She reported profound weakness, fatigue, muscle twitching, and wandering joint pain.
In an effort to improve her strength and endurance, I developed a treatment plan involving gentle aquatic exercise. The water would provide resistance she could tolerate, and the buoyancy could be used to our advantage. She appeared to do well at our first session but chose not to return. She explained that despite the gentleness of the intervention, she experienced overwhelming fatigue and malaise after any type of exercise.
Another patient came to the clinic with a diagnosis of neck pain. Patients can often associate the onset of symptoms with a precipitating event, but this patient’s pain came on gradually and without apparent cause. X-ray and MRI results were normal except for mild age-related changes. The location of her pain shifted randomly, moving from the upper to the lower neck region appearing on the right one day and the left another.
Typically, patients experience symptoms that improve or worsen in a predictable pattern associated with posture, repeated movements, or activities, but this patient’s symptoms fit no such pattern. She experienced numbness and tingling that migrated. During several treatment sessions, she complained of intense headaches and felt generally unwell due to a virus she recently caught that she “just couldn’t shake.” Whenever she appeared to improve in response to treatment, she would regress for reasons unknown.
Horowitz symptom questionnaire
I’ll never know if those patients had Lyme disease. At the time, I didn’t know enough about the disease to consider it as a possible underlying cause for their symptoms.
Today I am alert to its varied manifestations and have the benefit of using a tool called the Horowitz Multiple Systemic Infectious Diseases Syndrome Questionnaire to help sort things out.
The Horotwitz questionnaire has been shown to be a valid, efficient, and low-cost screening tool to assist practitioners in deciding if additional testing is needed to distinguish between Lyme disease and other illnesses. The results of a 2017 study showed that this questionnaire accurately differentiated those with Lyme disease from healthy individuals. It can be used by medical practitioners or laypersons.
According to the CDC, some 476,000 individuals in the United States are diagnosed and treated for Lyme disease annually. According to MyLymeData, most patients see more than four physicians prior to being diagnosed, and 36% do not receive a diagnosis before at least six years of illness.
It’s reasonable to assume that many individuals with Lyme disease who have not yet been diagnosed seek physical therapy services to address the manifestations of the infection. Given that early treatment is associated with better outcomes, raising awareness among health care professionals is imperative.
It’s also important to make people aware of the limitations of diagnostic testing and that they have a choice when seeking treatment. They can choose to be treated under the guidelines set forth by the Infectious Diseases Society of America or those established by the International Lyme and Associated Diseases Society.
Early diagnosis is critical
To that end, I wrote an article that was recently published in Physical Therapy Journal to guide physical therapists in the recognition and referral of individuals with suspected Lyme disease. I hope that by educating physical therapists about the disease, many individuals will be diagnosed sooner than they might be otherwise.
Click here for the Horowitz Questionnaire: MSIDS-QUESTIONNAIRE-FINALR
Jennifer Shea, PT, ATC-R is a retired adjunct faculty member of Springfield College in Massachusetts.
Shea J. Physical therapist recognition and referral of individuals with suspected Lyme disease. Physical therapy. 2021;101(8). doi:10.1093/ptj/pzab128
Horowitz RI. Horowitz Lyme Questionnaire. CanGetBetter. Accessed February 12, 2021. https://cangetbetter.com/wp-content/uploads/2021/02/MSIDS-QUESTIONNAIRE-FINALR.pdf
Citera M, Freeman PR, Horowitz RI. Empirical validation of the Horowitz multiple systemic infectious disease syndrome questionnaire for suspected Lyme disease. Int J Gen Med. 2017;10:249-273. doi: 10.2147/IJGM.S140224
While treatment wasn’t the focus of this article, please understand it would be very unwise to “choose” IDSA Lyme treatment, as you will be given an insufficient course of doxycycline. This abysmal, monotherapy has shown to fail in nearly every antibiotic study ever done for the simple reasons that Lyme is a persistent, stealthy pathogen, and it rarely comes alone.
Far wiser, is to locate a Lyme literate doctor specifically trained in tick-borne illness who appreciates and understands the complexities of treating this monster. These doctors diagnose and treat clinically based upon symptoms, not an antiquated, faulty test that misses anywhere from 50-90% of cases.
If you are new to this game, please read the sordid back-story and why there is polarization within the medical community on nearly every aspect of the illness.