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Lyme disease: Obstacles to diagnosis and effective treatment

Lyme disease is a bacterial infection that is spread when a person is bitten by an infected tick. A recent study explored the factors affecting its diagnosis and effective treatment.

Lyme disease is a bacterial infection spread by ticks. While Lyme disease has been associated with deer ticks, other species can also spread the disease.  Individuals increase their risk of being bitten by an infected tick when they participate in outdoor activities in affected areas, wooded areas, or in areas with high grasses.  Outdoor pets can also carry infected ticks into the home.

Prevention Strategies

The best prevention strategies involve preventing ticks from attaching to the skin.  Avoiding wooded, overgrown areas works best to prevent tick bites.  However, if individuals go hunting or hiking, health providers suggest using insect repellant and wearing hats, long-sleeved shirts, and long pants tucked into closed-toe shoes. Individuals are also advised to brush off clothing before entering the home and to do a visual scan for ticks on the skin.

If a person finds any ticks on their bodies, it is vital to remove them as soon as possible.  If a tick has attached to the skin, tweezers can help grasp the tick between the head and the skin to gently pull it away.  It is okay if any parts of the mouth remain since this part of the tick does not transmit the disease and it will work itself out of the skin.

Stages and Symptoms

Lyme disease has three phases:

  • Early Lyme disease phase: Can last up to 90 days and involves the spread of borrelia burgdorferi spirochetes (long, helically coiled cells) at the site of the bite
  • Early disseminated Lyme disease: The bacteria begin to spread throughout the body
  • Late Lyme disease: The bacteria have spread throughout the body. This phase is characterized by the appearance of a lesion and target-like rash, called erythema migrans lesions, at the site of the bite which can appear in the first month after the bite (average seven to ten days) and which typically fades within three to four months.

Once the bacteria enter the bloodstream, it causes inflammation in the joints and the nervous system.  In some cases, other organs can also be affected.  The most common symptoms of Lyme disease include musculoskeletal pain, fatigue, headaches, nausea, numbness, neck pain, and cognitive impairment.  It is not known how the spirochetes cause symptoms, but some researchers posit that they stem from the body’s autoimmune response to the bacterium.

Regardless of the pathology, chronic Lyme disease can significantly impact a person’s quality of life.  According to a survey of 3,000 individuals with chronic Lyme disease, 43% reported that, due to the severity of their symptoms, they are unable to work. Moreover, 50% disclosed that they have been ill for more than 10 years.

The General Model of Total Patient Delay (GMTPD)

In a recent study published in BMJ open, American researchers conducted in-depth telephone interviews (2014-2017) with 26 individuals (22-70 years of age) who had confirmed diagnoses of Lyme disease.

Each person was asked about their experiences with diagnosis and treatment and their answers were coded to identify common themes based upon the GMTPD stages:

  1. Appraisal Delay: Time between symptom onset and inferring illness
  2. Illness Delay: Time between inferring illness and decision to pursue medical attention
  3. Behavioural Delay: Time between the decision to seek help and calling to scheduling an appointment
  4. Scheduling Delay: Time to the actual appointment
  5. Treatment Delay: Time between appointment and treatment

Factors Affecting Diagnosis

Misattribution led to appraisal, illness, and behavioural delays

Since ticks are very small, not all affected individuals are aware that they have been bitten.  In addition, the subsequent rash may not appear to be shaped as the characteristic target or may not appear at all.  For example, only 10 participants reported having a rash, 3 of which were shaped like a bullseye.  In only five cases, was the rash severe enough for the individuals to seek medical attention.

In general, patients were quick to schedule medical follow-up once they began experiencing other symptoms such as fatigue and joint pain; however, since the three phases of Lyme disease overlap and the second phase may be skipped, diagnosis was still difficult.

Nearly 35% of the participants were sent for consultations with neurologists and rheumatologists and were initially diagnosed with other conditions.  It should be noted that scheduling delays were not found to be a significant obstacle to care for any of the participants.

Testing for Lyme Disease

Unlike strep throat, there is currently no way to culture the bacteria to test for Lyme disease.  A practical approach is to test the tick. However, this is not always possible.  If a person begins to experience some symptoms or an erythema rash appears, a diagnosis can be confirmed using serologic testing or an IgG western blot test to look for Lyme disease antibodies in the blood.

Again, lab tests such as these are not always sensitive enough to identify the presence of Lyme disease. Some tests produce “false negatives” meaning that the test indicates no Lyme disease when the person does have it.

Factors Affecting Effective Treatment

Healthcare System delays

Due to the health insurance system in the United States, the lack of adequate health insurance did contribute to treatment delays for several participants.

Lack of Research

Current protocols call for infected individuals to be prescribed a two-to-four-week course of treatment with antibiotics such as amoxicillin or doxycycline.  Yet, there is a lack of research regarding the dosage or length of antibiotic treatment required to eradicate symptoms and prevent relapse. Also, it is currently difficult to assess whether individuals with chronic Lyme disease are responding well to treatment since there is no definitive way to determine if the infection is being resolved. Future research investigating these issues can only help to reduce the number and severity of both symptoms and complications from Lyme disease.


Participants reported that they were quicker to seek medical attention and treatment when prompted by family members. In some cases, Lyme disease was only diagnosed and treated when the family member demanded that they transfer to a different medical professional or hospital.

In conclusion, the GMTPD was a useful tool for assessing the obstacles to the diagnosis and effective treatment of Lyme disease. Understanding these obstacles will help lead to better treatments and better information dissemination.

Written by Debra A. Kellen, PhD


(1) Donta, S. T. (2012). Issues in the diagnosis and treatment of lyme disease. The open neurology journal6, 140.
(2) Hirsch, A. G., Herman, R. J., Rebman, A., Moon, K. A., Aucott, J., Heaney, C., & Schwartz, B. S. (2018). Obstacles to diagnosis and treatment of Lyme disease in the USA: a qualitative study. BMJ open8(6), e021367. doi:10.1136/bmjopen-2017-021367
(3) Johnson L, Wilcox S, Mankoff J, Stricker RB. Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey PeerJ. 2014.
(4) Medline Plus.  Lyme disease.  Retrieved on June 25, 2018 from https://medlineplus.gov/ency/article/001319.htm

Debra Kellen PhD
Debra Kellen PhD
With undergraduate degrees in Neuroscience and Education from the University of Toronto, Debra began her career as a teacher. Nine years later, when she moved to Michigan, Debra earned a Ph.D. in Education Policy from the University of Michigan. Today, Debra organizes conferences and conducts workshops to provide training and support for educators and medical professionals on effective coaching, staff recruitment and training, and creating a culture of continuous improvement. She loves to read and enjoys the challenge of translating medical research into informative, easy-to-read articles. Debra spends her free time with her family, travelling, wandering through art fairs, and canoeing on the Huron River.


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