Lyme Disease: Implications for General Practice
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Editorials Lyme disease: implications for general practice INTRODUCTION Lyme disease is a complicated disease that has been under-reported, and sometimes “Lyme disease is seen throughout the UK and is more unknown. A recent surge in Lyme disease prevalent than many people realise. If left untreated, or -focused publications has resulted in a if treated very late, Lyme disease can result in years of much needed growth in Lyme disease awareness. The National Institute for disability.” Health and Care Excellence (NICE) has published a guideline with an overview of the main issues with regard to Lyme disease;1 Rayment and O’Flynn have written DIAGNOSIS OF LYME DISEASE of Lyme disease often mimic flu or other a summary for the BJGP covering some An erythema migrans (EM) is considered diseases. There is no single distinctive pattern important points;2 and Cruickshank et al, definitive for a diagnosis of Lyme disease, of symptoms to help with the diagnosis. It is have also published a recent summary of and is described in the NICE Guideline1 therefore a challenge for doctors to make a the disease in the BMJ.3 and in the BJGP summary;2 however, many confident diagnosis. In the last 40 years, Lyme disease has patients with Lyme disease do not have The oral antibiotic doxycycline is usually rapidly become the most common tick- this distinctive rash, and so they need to be effective for early stage Lyme disease, borne infection in many parts of Europe diagnosed using other criteria. Only 25% and is a relatively benign treatment. Given and the US. The US Centers for Disease of the cases had an EM in the original the difficulty in diagnosis, oral antibiotic Control and Prevention (CDC) estimate that study in 1977 when Lyme disease was first treatment may be appropriate in the early there are around 300 000 new cases of identified.7 That study, unlike some others, stages even if there is some uncertainty Lyme disease per year in the US.4 For all of did not have the rash as one of the criteria about the diagnosis, since rapid treatment Western Europe an estimate was published for being included in the study. Many recent is important to prevent long-term morbidity. of around 232 000 cases per year, but this studies of Lyme disease have a higher Oral antibiotics, however, may not be effective was based on data collected many years ago, proportion of cases with the rash.8 However, if the infection has reached the later stages and so is now likely to be an underestimate.5 sometimes having the rash was one of the of the disease, when intravenous ceftriaxone A study of data from the Clinical Practice main reasons the patients were included, in may be recommended. Some patients with Research Datalink, a primary care database which case they may not provide a reliable late stage Lyme disease may have had oral covering about 8% of the population in the estimate of the proportion with a rash, antibiotics but may still need intravenous UK has shown that the number of cases of particularly if some Lyme disease cases ceftriaxone. Lyme disease recorded by GPs increased were not part of the inclusion criteria, and LONG-TERM PROBLEMS FOLLOWING rapidly over the years 2001–2012, leading to so were not counted in the denominator, LYME DISEASE an estimated UK total of nearly 8000 cases leading to an overestimate. in 2012.6 GP medical notes were no longer Along with many cases not having the rash If it is left untreated or inadequately treated recorded in the database after 2012, and so is the added difficulty that laboratory testing for some time, Lyme disease can lead to multiple problems. One of the long-term estimates are not available for recent years. for Lyme disease has inherent limitations, problems that can result from Lyme disease If the number of cases has continued to rise and both false positive and false negative is what is known as post-treatment Lyme since the end of the study period, then there results can occur.1 If the test is performed disease syndrome (PTLDS). Risk factors could have been over 8000 cases in 2019. too early (within 4 weeks of symptom onset) for PTLDS include a delay in treatment and Lyme disease was detected in every region then the person may not have developed increased severity of the initial illness. One throughout the country, but the highest antibodies to the bacteria that causes Lyme study found that most of the patients with incidence rate and largest number of cases disease, resulting in a false negative result. PTLDS had had a misdiagnosis or a delay were seen in Scotland followed by the south Negative laboratory test results, therefore, in treatment.9 The authors wrote that, for and south west of England. It was also seen do not exclude active infection. Furthermore, those patients with a delay in treatment, at all times of year, although particularly in Lyme disease can lead to a very wide range the symptoms of PTLDS were more likely the summer months when people tend to go of symptoms, which is why it has been called to have been overlooked or attributed to a out walking. ‘the great imitator’. The early symptoms viral illness. Allen Steere, who first identified Lyme disease in Lyme Connecticut in the US, has written: “The RCGP has prepared a Lyme disease toolkit, ‘ ... it is hypothesized that Borrelia burgdorferi which includes links for resources on education, may trigger immunologic or neurohormonal processes in the brain that cause persistent training, and other information for clinicians, patients, pain, neurocognitive, or fatigue symptoms, and the general public.” despite spirochaetal killing with antibiotic therapy’.10 106 British Journal of General Practice, March 2020 ADDRESS FOR CORRESPONDENCE “... the charity Lyme Disease Action, which is working Victoria Cairns with the RCGP, provides resources for people at risk of Email: [email protected] Lyme disease and also their clinicians.” REFERENCES 1. National Institute for Health and Care Excellence. Lyme disease. NICE guideline This syndrome is mentioned in the NICE This highlights again the importance of [NG95]. 2018. https://www.nice.org.uk/ supplementary document on the evidence avoiding a delay in treatment. guidance/NG95 (accessed 3 Feb 2020). review for the management of ongoing 2. Rayment C, O’Flynn N. Diagnosis and symptoms.1 CONCLUSION management of patients with Lyme disease: NICE guideline. Br J Gen Pract 2018; DOI: A meta-analysis on this has provided Lyme disease is seen throughout the UK and https://doi.org/10.3399/bjgp18X699713. strong evidence that some Lyme disease is more prevalent than many people realise. 3. Cruickshank M, O’Flynn N, Faust SN, patients have fatigue, musculoskeletal pain, If left untreated, or if treated very late, Lyme Guideline Committee. Lyme disease: and neurocognitive difficulties that can disease can result in years of disability. It is summary of NICE guidance. BMJ 2018; 361: persist for years.11 The pattern of symptoms to be hoped that an increased awareness k1261. appears to be different from that seen with of the problem will lead to an increase in 4. Centers for Disease Control and Prevention. fibromyalgia, depression, and chronic fatigue preventive measures, such as avoiding dense How many people get lyme disease? 2018. http://www.cdc.gov/lyme/stats/humancases. syndrome. The fatigue from PTLDS has been vegetation, particularly wooded or grassy html (accessed 3 Feb 2020). described as profound and debilitating, and areas with moist and humid environments, 5. Sykes RA, Makiello P. An estimate of Lyme not as a vague symptom of tiredness. The using tick repellents and pesticides on skin borreliosis incidence in Western Europe. J musculoskeletal pain from this syndrome and clothing, tucking trousers into socks, and Public Health (Oxf) 2017, 39(1): 74–81. is often a roving, asymmetrical pain in the searching the body for ticks after potential 6. Cairns V, Wallenhorst C, Rietbrock S, limbs, and is different from fibromyalgia, exposure. Greater awareness of the risks Martinez C. Incidence of Lyme disease in the may also lead to more rapid diagnosis and UK: a population-based cohort study. BMJ which is characterised by widespread, Open 2019; 9(7): e025916. symmetrical pain at many sites over the treatment, which is important to prevent 7. Steere AC, Malawista SE, Snydman DR, et al. whole body. Memory problems, particularly long-term morbidity. Lyme arthritis: an epidemic of oligoarticular verbal memory, have also been observed arthritis in children and adults in three as well as poor concentration, particularly RESOURCES FOR FURTHER Connecticut communities. Arthritis Rheum auditory attention. In confirmation of INFORMATION ABOUT LYME DISEASE 1977; 20(1): 7–17. this neurocognitive pattern, Fallon et al 12 The RCGP has prepared a Lyme disease 8. Cairns V. Scrutinising Lyme disease in the toolkit, which includes links for resources UK — Aspiro reply. Lancet Infect Dis 2020 (in observed significantly reduced blood flow press). on education, traning, and other in certain white matter areas of the brain 9. Rebman AW, Bechtold KT, Yang T, et al. in patients with PTLDS compared with information for clinicians, patients, and the The clinical, symptom, and quality-of-life 15 healthy subjects, and the flow reductions general public. Included is also a link for characterization of a well-defined group of were significantly associated with deficits the RCGP e-learning course, which may patients with posttreatment Lyme disease help clinicians to recognise the clinical syndrome. Front Med (Lausanne) 2017; 4: in memory and visuospatial organisation. 224. This could sometimes be misdiagnosed as features of this easily missed condition. It also provides links to other evidence- 10.