Lyme disease: chronic illness is rare, say expertsBMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l5975 (Published 10 October 2019) Cite this as: BMJ 2019;367:l5975
All rapid responses
The views represented at the Science Media Centre briefing and reported on in this article are one extreme of a diverse range of views on Lyme disease. However, there is an ever-increasing body of science showing that Lyme disease is not rare, that the tests are unreliable, that chronic illness is common, and that it involves more than 'residual symptoms' and can be life-threatening.
This briefing attempted to downplay the incidence of tick-borne diseases in the UK when evidence, both scientific and anecdotal, shows it is on the increase. A recent BMJ article found that UK tick-borne Lyme disease cases may be 3 times higher than previous estimates (1), giving an estimated total of 8000 cases per annum. An editorial in the Lancet, while mentioning one critique of the study which concluded that the cases were over-estimated, stated that "the UK relies on laboratory-based surveillance, which does not lend itself to accurate incidence estimation because it can miss many patients" and "official estimates are accepted to be too low" (2). If it is accepted that the official estimates are too low, and if research has found them to be much higher, repeating official figures without mention of this study is misleading.
It was stated that "fewer than one in 20 experience residual symptoms" and that there is misinformation, particularly around “chronic” or “post-treatment” Lyme disease. However, the science indicates higher levels. It is well documented in the literature that 10-20% of those treated experience treatment failure (3).
They warn that patients should be "wary of seeking non-validated tests, many of which involve samples being sent abroad". However, they fail to mention that UK testing is acknowledged to be unreliable. Standard UK testing relies on detecting antibodies to the spirochaetes when it is known that antibody response is undulatory in nature (4) and wanes with and without treatment or may not exist at all (5). UK testing does not include tests for antibodies to persistent forms of borrelia (6). Research has concluded that "the detection and recognition of atypical forms in infected tissues is essential for the diagnosis and the treatment as they can occur in the absence of the typical spiral Borrelia form" (7). Much more is needed in the development of reliable tests within the UK and, until then, Lyme disease remains a clinical diagnosis.
In addition, not all foreign tests are unvalidated. Any test which is part of ISO 15189 laboratory accreditation is independently validated before it can be accredited, and many foreign laboratories are ISO 15189 accredited, though not all their tests are included in that accreditation. Both the German accreditation body, DAkkS, and the UK accreditation body, UKAS, are signatories to the ILAC Mutual Recognition Agreement (8) and so DAkkS accredited German tests must be accepted in the UK. Conversely, not all UK tests are accredited. For example, there is no accredited IgM Lyme test available at Raigmore.
This briefing also attempted to downplay the consequences of infection. Borrelia has been found in four different organs in human autopsy tissues from a well-documented patient who was antibody negative, CSF positive, and culture positive after standard treatment, who clinically improved with longer course antibiotics which was safe and efficacious, but who ultimately died when treatment was withdrawn (9). Suggesting that patients have 'residual symptoms' does not match the reality for many patients who are facing devastatingly life-changing and sometimes life-threatening illness if they have missed the early treatment window (Type II persistence) or if persistent forms were present from an early stage (Type I persistence) (10).
In addition, Lyme is only one tick-borne disease in the UK. Other infections such as Babesia have been found to be present in abundance in UK animals (11, 12, 13) but there are no accredited tests at Porton Down or Raigmore. A French study has shown that polymicrobial infections are the rule rather than the exception (14). Co-infection with Babesia can reduce Borrelia antibody response because Babesia "causes splenic dysfunction that reduces B- and T-cell function and the production of antibodies required to control Borrelia burgdorferi infection" (15). Many of the sickest people are therefore being let down further by lack of available testing for other tick-borne diseases.
Patients are travelling abroad and getting foreign tests because the NHS, and indeed the people who were a part of this briefing, are letting UK patients down. That the BMJ has published such one-sided opinion which is not backed up by science is unacceptable and propagates human rights violations to patients.
What we need is:
- Admission that patients are being failed by lack of reliable testing for Borrelia and lack of comprehensive testing for co-infections.
- A study similar to the French one above to identify all pathogens in UK ticks.
- A concerted effort to develop comprehensive testing for all such human infections.
- An understanding that, although Borrelia is usually easy to treat in the first few weeks after infection, when treatment is delayed it is a serious and potentially fatal disease which is very difficult to treat.
- A drive to fully understand how to treat those who are chronically ill after a tick bite, while understanding that many patients are possibly suffering from polymicrobial infections.
Stating that patients have 'chronic fatigue syndrome' is no answer for patients who are chronically ill after a tick bite. They may not all have Lyme disease but downplaying the extent of the issue while denying them proper testing, treatment, or compassionate support is unethical.
Lyme Resource Centre is currently compiling a freely-available database of peer-reviewed evidence-based scientific literature on tick-borne diseases to assist researchers and anyone else interested in accurate information on tick-borne diseases. It is available at https://www.lymeresourcecentre.com/research.
Prof. John Lambert MD PhD
Dr. Janey Cringean BSc(Hons) MSc PhD
Mrs. Arlene Brailey BSc(Hons) MRPharmS FFRPS
Lyme Resource Centre
Registered Scottish Charity: SC049151
3. https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-66... (including references 13, 14 and 15)
Competing interests: No competing interests
This article is reporting on a briefing on Lyme disease held at the Science Media Centre. Unfortunately it undermines, without evidence, the recent Open BMJ report on rising incidence of Lyme disease in the UK (1) and key recommendations and information included in NICE Lyme disease guideline (2), RCGP Lyme disease toolkit (3) and PHE educational literature (4), including:
- the need for greater awareness of Lyme disease
- that infected ticks are found throughout the UK and Ireland
- that tests for Lyme disease have limitations. Both false-positive and false-negative results can occur
- not to rule out the possibility of Lyme disease in people with symptoms but no clear history of tick exposure.
The NICE guideline ‘recommendations aim to improve awareness of Lyme disease, to promote early investigation and treatment, and to optimise outcomes in people with Lyme disease. They will change current practice by prompting healthcare professionals to think about the possibility of Lyme disease. This may result in an increase in testing and treatment, but the cost of this is likely to be balanced by the benefits of improved recognition and early treatment.’ (5) (Section 1.1, Awareness of Lyme disease - rationale and impact)
In contrast, this article reassures clinicians that it is acceptable to assume that their patients who have had Lyme disease are unlikely to develop chronic illness, when many are not experienced in assessing patients for either acute or late Lyme disease or aware of the limitations of all tests. The take home, headline message is damaging and unfounded, devoid of any evidence-based research.
Moreover, figures quoted to support the conclusion that people who have had Lyme disease rarely go on to have chronic problems, simply don’t add up. PHE incidence figures for 2018/2019 state 1695 cases, 1157 of which were acute (6). Logically the remaining 538 of these cases were patients experiencing symptoms who were diagnosed late. To state that, ‘fewer than one in twenty experience residual symptoms’ is highly misleading if these figures are correct. We are unaware of the evidence relating to the 2,000 cases who have been successfully treated. Where can this be found? This figure has not been quoted previously. PHE advice states that, ‘more serious symptoms may develop several weeks, months or even years later if Lyme disease is left untreated or is not treated early on’.(4) Where is the evidence that treatment has been successful and how can this be stated with any certainty?
The media briefing that informed this article, and many others in national press this week, puts patients with Lyme disease at greater risk of being given an incorrect diagnosis and being left untreated, possibly leading to long term debilitating symptoms. Already stigmatised patients may also find conversations about Lyme disease with their doctors, family members and friends more difficult. Awareness, understanding and empathy towards patients by the general public may also be tainted by these reports. Indeed, we are already hearing anecdotal reports of these experiences from parents and patients this week. Patients who may be suffering from a treatable, bacterial infection deserve to be treated and respected, and not marginalised further by careless and unevidenced reporting.
It is disappointing to see these unscientific and damaging messages being amplified following a year of increased awareness, supported by the NICE Lyme Disease Quality Standard (7) urging local authorities to raise awareness in their communities and emerging tools for doctors. (2) (3)
1. Incidence of Lyme Disease in the UK: A Population-Based Cohort Study. Victoria Cairns, Christopher Wallenhorst, Stephan Rietbrock, Carlos Martinez. https://bmjopen.bmj.com/content/9/7/e025916
2. NICE Lyme Disease Guideline https://www.nice.org.uk/guidance/ng95
3. Royal College of GPs Lyme Disease Toolkit https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/lyme-di...
4. Lyme Disease: Signs and Symptoms Ref: PHE publications gateway number: 2015169PDF, 315KB, 4 pages. https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
5. NICE Lyme Disease Guideline. Section 1.1, Awareness of Lyme Disease - Rationale and Impact https://www.nice.org.uk/guidance/ng95/chapter/Recommendations
6. Common Animal Associated Infections Quarterly Report (England and Wales): First Quarter 2019 Health Protection Report Volume 13 Number 20 14 June 2019. Table 1. Animal associated infections in England and Wales: rolling four-quarter laboratory reports by specimen date, Q2 2018 – Q1 2019 (weeks 14/2018-13/2019) compared to the previous year https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
7. NICE Lyme Disease Quality Standard. Quality Statement 4 – Awareness of Lyme Disease ‘Local authorities organise health promotion activities with organisations in their area to raise public awareness about how to prevent Lyme disease.’ https://www.nice.org.uk/guidance/qs186/chapter/Quality-statement-4-Aware...
Competing interests: No competing interests
It is good to see the Science Media Centre briefing journalists in an attempt to reduce the publication of articles featuring patients apparently diagnosed by private overseas laboratories. Many press articles may well have misled people, and Lyme Disease Action is often contacted by distressed patients believing they had a diagnosis, only to find it not accepted by their NHS GP.
However, it is unfortunate that the briefing itself may now give rise to further misconceptions. The “around 1000 laboratory confirmed cases annually” in England & Wales mentioned was actually 1641 in 2018 of which 31% were classified as late diagnosed. Matthew Dryden has documented a large number of Hampshire cases(1) but it should be noted that these were all started on treatment within 9 weeks of infection. It is delayed treatment that can lead to a worse outcome.
Persisting symptoms are not solely fatigue and poor concentration. A Norwegian study(2) found that out of 50 treated Lyme neuroborreliosis patients, 15 (40%) still had neurological findings 30 months after treatment. Only 56% of treated patients reported complete recovery and to the patient a subjective symptom can be as bad, or worse, than an objective finding.
It is very surprising that no-one mentions that Lyme disease is an emerging disease in the UK and this may be a more significant reason for the increase in cases than heightened awareness. Despite having been recorded in mainland Europe for over a century, the first confirmed UK case of Lyme disease was reported in 1985 and it would be not unreasonable to therefore expect that the prevalence in wildlife and ticks is therefore on the increase.
To state that 1.9% of ticks in the UK carry Lyme disease is misleading, and I wonder if this is a misprint. The infection rate of pathogenic Borrelia species in ticks at any one site has so far been found to range from zero to 18% and to vary from year to year (3,4) with those particular studies giving an average of 1.4% (Scotland) and 14.9% (Southern England) respectively.
Infected ticks are not spread by deer. Although deer increase the numbers of ticks and transport them to new areas, there is evidence that ruminants kill Borrelia in ticks attached to them(5) and deer are considered incompetent reservoirs of B burgdorferi. This is a common misconception in the press but I am surprised to see it repeated in the BMJ.
In a disease facing so much controversy and with so many uncertainties, we do need to try to get the known facts straight, few though they are.
1. Dryden M, Saeed K, Ogborn S, Swales P. Lyme borreliosis in southern United Kingdom and a case for a new syndrome, chronic arthropod-borne neuropathy. Epidemiol Infect. 2014 May 9;1–12.
2. Eikeland R, Mygland A, Herlofson K, Ljøstad U. European neuroborreliosis: quality of life 30 months after treatment. Acta Neurol Scand. 2011 Feb;1–6.
3. Millins C, Gilbert L, Johnson P, James M, Kilbride E, Birtles R, et al. Heterogeneity in the abundance and distribution of Ixodes ricinus and Borrelia burgdorferi (sensu lato) in Scotland: implications for risk prediction. Parasit Vectors. 2016;9(1):595.
4. Hansford KM, Fonville M, Gillingham EL, Coipan EC, Pietzsch ME, Krawczyk AI, et al. Ticks and Borrelia in urban and peri-urban green space habitats in a city in southern England. Ticks Tick Borne Dis. 2016 Dec 21;March(8(3)):353–61.
5. Richter D, Matuschka F-R. Elimination of lyme disease spirochetes from ticks feeding on domestic ruminants. Appl Environ Microbiol. 2010 Nov;76(22):7650–2.
Competing interests: No competing interests
I am glad that the article has raised awareness of the side effects of long term antibiotics such as blood stream infection related to intravenous line use and Clostridium difficile infection. I also agree that people should not be afraid of enjoying the outdoors because of ticks as long as precautions are taken to minimise the risks. The health benefits of outdoors activities are well recognised.
In Scotland, various campaigns to raise awareness of Lyme disease include tick removal video, education webinar for healthcare professionals and public information posters and leaflets.
It is hope that with the recent launch of the demonstration phase of LymeApp, the public can be better prepared and enjoy the beautiful outdoors in Scotland using appropriate information provided by the app in due course.
Competing interests: No competing interests