UK doctors find most Lyme concerns unwarranted, again

Below is an abstract from the ESCMID Global 2024 conference. It is another study to add to the pile showing the enormous Lyme disease overdiagnosis epidemic.

As the American Academy of Pediatrics found:

Misinformation about chronic Lyme disease on the Internet and in popular media has led to publicity and anxiety about Lyme disease that is out of proportion to the actual morbidity that it causes.

This report is a follow-up to a 2012 study by Cottle and colleagues at the same UK infectious disease clinic. The Cottle study is discussed on our page on how the destructive chronic Lyme movement recruits followers. This report is also consistent with Cottle’s findings and a BBC article, which describe how people with chronic fatigue syndrome may receive false Lyme disease diagnoses.

Most patients referred to a British infectious disease clinic with possible Lyme disease have a different final diagnosis: no change in the last decade

F. Suliman 1, M.J. Riley 1, K. Last 1, J. Cruise 1, N. French 1, N. Beeching 1, S. Defres 1

1Tropical and Infectious Disease Unit, Liverpool University Hospitals NHS Foundation Trust – Liverpool (United Kingdom)

Background

The incidence of Lyme disease (LD) has increased in Europe and the UK over the past decade (UKHSA, 2022). Annual referrals of suspected cases to the Liverpool Tropical and Infectious Disease Unit (TIDU) have also risen from 33 in 2010 to 99 in 2019. Only 23% of 115 referrals to this clinic in the years 2006-10 were ultimately diagnosed with LD (Cottle et al, 2012).

Aims

We are undertaking a similar review of patients referred between 2015 and 2022 to assess possible changes in referral patterns, final diagnoses and clinical management. We present an interim analysis of our findings in 2019.

Methods

Retrospective review of adults referred with suspected LD in 2019. Diagnosis and clinical management follow British and/or European guidelines. Serological testing is performed at the national reference laboratory.

Data were abstracted from case notes, clinical letters and laboratory databases onto proformas based on our previous study. Key items included demography, clinical findings, investigations, diagnoses and treatment both before referral and in the clinics.

Results

58 (58.6%) of 99 patients referred in 2019 were female. Median age was 46 (range 16-83) years. Serological tests were positive in 10 (10.1%), negative in 81 (81.8%) and not performed for 8. Fourteen (14.1%) patients had a final diagnosis of LD, 27 (27.2%) had chronic fatigue syndrome and 27 (27.2%) had other medical conditions. In 31 (31.3%) patients, LD was excluded but no specific diagnosis could be made.

Conclusions

As in 2006-10, only a minority of patients referred to our tertiary clinic in Liverpool had a final diagnosis of LD; most have chronic fatigue syndrome, other medical conditions, or an undiagnosed condition. Similar results have been reported from clinics the USA and elsewhere in Europe (Kobayashi et al, 2022).

A dedicated pathway is being revised to aid referral of patients with suspected LD to tertiary care. Holistic care pathways are needed to improve diagnosis and management of the large proportion of patients without a final diagnosis.

References

1. UK Health Security Agency (2022). Lyme disease epidemiology and surveillance.

2. Cottle LE, et al. Lyme disease in a British referral clinic. QJM June 2012; 105(6): 537-43

3. Kobayashi T, et al. Mistaken identity: Many diagnoses are frequently misattributed to Lyme disease. Am J Med 2022; 135:503