What makes Lyme disease so difficult to diagnose?

Lyme disease is a common tick-borne infection caused by the Borrelia burgdorferi bacteria, with increasing prevalence as tick habitat areas expand. Despite this, it remains under-recognized in the clinical setting, and many patients with acute or chronic Lyme disease may not be diagnosed correctly or in the appropriate time frame. This has major implications for whether someone receives effective treatment.

What makes Lyme disease so difficult to recognize, and what are some of the obstacles healthcare providers, and healthcare systems in general, face when it comes to Lyme diagnosis?

The signs and symptoms of Lyme disease can be very similar to those of other medical conditions.

Lyme disease has been referred to as “the great imitator” due to the often vague pattern of symptoms seen (fatigue, headache, malaise, musculoskeletal pain, neuropathic pain, cognitive dysfunction, mood symptoms, gastrointestinal symptoms, etc.). Some or all of these symptoms may be observed in conditions such as multiple sclerosis (MS) and other neurologic or autoimmune conditions, chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), fibromyalgia, irritable bowel syndrome (IBS), small intestinal bacterial overgrowth (SIBO), and others.

The presence of co-infections and/or mold toxicity can complicate the clinical picture.

Other tick-borne infections commonly co-infecting those with Lyme disease, such as Babesia, Bartonella, Anaplasma, and Ehrlichia species, and/or mold toxin exposure and accumulation (known as mycotoxicity) can cause additional symptoms, worsen classic Lyme symptoms, and add further complexity to diagnosis and treatment.

Most doctors are not trained to recognize the signs and symptom of Lyme disease.

As a complex, multi-system illness, many doctors (including myself, until residency) do not receive adequate classroom or clinical training in recognizing patterns associated with Lyme disease, ordering the appropriate testing with full consideration of test limitations, and recommending up-to-date treatments.

Less than 30% of patients with Lyme disease living in the USA recall a tick bite.

Despite being a tick-borne infection (although other routes of transmission are being considered), only a fraction of Americans remember having a tick bite with prolonged attachment. This makes it difficult for a doctor to obtain an accurate history of potential past exposures.

The appearance of the classic bulls-eye rash, also known as erythema migrans (EM), is highly variable. Many doctors think that the absence of such a rash is evidence against a person having Lyme disease, but we often see patients with Lyme disease not display this rash as part of the acute phase of illness.

Conventional lab testing has low sensitivity (but high specificity).

Traditional CDC diagnostic criteria for Lyme were developed to maximize specificity (meaning, a positive test is highly likely to indicate infection with Borrelia burgdorferi, the bacteria that causes Lyme). Lyme ELISA and IFA tests are lower in sensitivity, and not always able to detect a positive antibody response. Additionally, inadequate antibody production/response (known as seronegativity) has been documented.

Specialty labs have worked hard to develop more sensitive testing methods, but a number of factors can complicate this process. These include cost and availability of testing, the presence of Lyme-like tick-borne infections, such as tick-borne relapsing fever (TBRF) or Southern tick-associated rash illness (STARI), and overlapping immunologic conditions that affect B- and T-cell function.

For this reason, Lyme disease is considered a clinical diagnosis, not a laboratory diagnosis, and lab tests should not be used alone to diagnose or rule out Lyme disease.

These are some of the main reasons Lyme disease can be so difficult to diagnose. Naturopathic medicine is well poised to assist patients in this area, with its emphasis on evaluating the whole person and identifying underlying causes of disease, as well as taking the time necessary to complete a thorough evaluation. We at Revolutions are committed to helping folks navigate the challenges of complex illness diagnosis and treatment. Please do not hesitate to reach out to us if you are needing evaluation and care in this area.

References

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Cook, M. and Puri, B., 2016. Commercial test kits for detection of Lyme borreliosis: a meta-analysis of test accuracy. International Journal of General Medicine, [online] Volume 9, pp.427-440. Available at: <https://www.dovepress.com/commercial-test-kits-for-detection-of-lyme-borreliosis-a-meta-analysis-peer-reviewed-article-IJGM> [Accessed 3 February 2021].

Dattwyler, R., Volkman, D., Luft, B., Halperin, J., Thomas, J. and Golightly, M., 1988. Seronegative Lyme Disease. New England Journal of Medicine, [online] 319(22), pp.1441-1446. Available at: <https://pubmed.ncbi.nlm.nih.gov/3054554/> [Accessed 3 February 2021].

Engstrom, S., Shoop, E. and Johnson, R., 1995. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. Journal of clinical microbiology, [online] 33(2), pp.419-427. Available at: <https://pubmed.ncbi.nlm.nih.gov/7714202/> [Accessed 3 February 2021].

Hengge, U., Tannapfel, A., Tyring, S., Erbel, R., Arendt, G. and Ruzicka, T., 2003. Lyme borreliosis. The Lancet Infectious Diseases, [online] 3(8), pp.489-500. Available at: <https://pubmed.ncbi.nlm.nih.gov/12901891/> [Accessed 3 February 2021].

ILADS. 2021. Lyme Disease Basics for Providers – ILADS. [online] Available at: <https://www.ilads.org/research-literature/lyme-disease-basics-for-providers/> [Accessed 3 February 2021].

Stanek, G., Fingerle, V., Hunfeld, K., Jaulhac, B., Kaiser, R., Krause, A., Kristoferitsch, W., O’Connell, S., Ornstein, K., Strle, F. and Gray, J., 2011. Lyme borreliosis: Clinical case definitions for diagnosis and management in Europe. Clinical Microbiology and Infection, [online] 17(1), pp.69-79. Available at: <https://www.clinicalmicrobiologyandinfection.com/article/S1198-743X(14)60916-2/fulltext> [Accessed 3 February 2021].