The views represented at the Science Media Centre briefing on 9th October and reported on in an article in the BMJ 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/s12889-019-6681-9 (including references 13, 14 and 15)