Re: Lyme disease: time for a new approach?
I became a doctor in 1975 when Lyme was first described. I have practiced as a GP in the Highlands of Scotland for 36 years and I published my first case of Erythema Migrans as an unusual event in 1992. Last year I diagnosed 11 patients with Erythema Migrans and 2 patients with secondary Lyme.
I don’t think the Scottish increase in prevalence is observer error. The mapping of prevalence is difficult as Erythema Migrans is a clinical diagnosis and UK GP coding systems have had difficulty reflecting uncertainty. Secondary and Tertiary Lyme rely on antibody makers and we lack a good test for current infection and bacterial load.
I have known enough people “before and after” Lyme to know they are not making it up. I am trained as a GP generalist to admit when I “don’t know “ things to patients and recognize my medical uncertainty.
Secondary Lyme is a low prevalence big impact disease. When I listen to patients with “chronic Lyme” I recognise people who have had their lives and careers ruined. Occupational exposure in Forestry workers or outdoor enthusiasts can turn healthy people with obvious wellbeing into disabled and angry people confronted with medical uncertainty.
We certainly don’t understand the individual human response to the Borrellia Spirochete. Some people will form their own immunity and we are left with the interesting recording of positive titres in Scottish blood donors with no symptoms (ref1).
Other people with secondary Lyme are left with Chronic Fatigue and neurological symptoms despite the presumed eradication of the bacteria with antibiotics. In the rare extreme cases this is analogous to multiple sclerosis which is a disease expressed and improved by immune function.
Unfortunately we have no prospect of trialling the mono clonal antibodies which are revolutionizing MS medical management until we have a test which can prove the absence of borrelia after antibiotics.
In a similar analogy to MS research and drug trials 15 years ago we have no UK cohort for an observational study of natural history, let alone consider treatment trials of immune modulation.
We need reliable tests certified by national research reference bodies to make future progress in an uncommon disease. I agree with the British Association of Infection statement (ref 2) to avoid blood tests in Erythema Migrans.
However, many patients with Secondary Lyme Borreliois (ref3) do not have a clear history of a tick bite and may present with a peripheral neuropathy, mono arthopathy, Bells Palsy or cardiac symptoms as Lyme is a multi system spirochete analogous to syphilis.
The BMJ article was triggered by press reports of “mother to child” transmission on Lyme. The same infected small vector bird or mammal in a garden could be a common source. (Ref4) We know congenital syphilis is real, so vertical transmission of Lyme must be theoretically possible, but impossible to prove with current prevalence of secondary Lyme. We must keep an adult, open mind on this question which has been helpfully raised by a UK family.
From the public health perspective, we are all trying to encourage “wellbeing” by outdoor activity. Outdoor nurseries, young people camping, walking through bracken and the fit elderly gardening in affected areas are recipes for diagnostic confusion and delay in treatment. City populations may go to enhance their wellbeing in the countryside at weekends and return with a rare diagnostic possibility to challenge city GPs.
Lyme clearly lacks certainty just now which is the great clinical challenge and interest scientifically.
We need to improve our Public Health message on Lyme Borrelliosis in the UK. Prompt removal of ticks with a plastic removal device will eradicate this disease. Currently, Public Health England is promoting the use of tweezers in their leaflets. This will only squeeze the stomach contents of the tiny questing Nymph tick and facilitate spread. I have yet to see a clinical case of Lyme where the tick has been removed by the plastic devices. Pharmacies need to be on the front line of selling plastic removal devices and providing information in affected areas, but are not currently doing so in Scotland.
We need to wean doctors and patients off talking about “Lyme Disease” with all its baggage and talk about “Lyme Borreliosis”. This will enable doctors to explain blood tests, immunity and natural history in a clearer fashion.
The most important message of the editorial is that we must be open and listen to patients who think they have been affected by Lyme, even if they are challenging us. I continue after 40 years of medical practice to learn most from my patients.
In the Highlands of Scotland, I am pleased as a front line GP to be part of research collaboration with social scientists, laboratory scientists, veterinary epidemiologists and public health to advance our understanding of Lyme. It is called LymeMAP and is funded by the European Space Agency. We seek to improve public understanding and aid risk prediction for Lyme Borreliosis. We have many challenges and uncertainties in Lyme, but we are making progress!
Ref 1: Munro H, Mavin S, Duffy K, Evans R, Jarvis LM Transfusion Medicine, British Blood Transfusion Society: letters 2015
Ref 2:’ The epidemiology, prevention, investigation and treatment of Lyme borreliosis in United Kingdom patients’: British Infection Association, Position Statement in United Kingdom, Journal of Infection (2011) 62,329-338.
Ref 3: S Mavin, EJ Watson, R Evans, National Lyme Borreliosis Testing Laboratory, Raigmore Hospital. ‘Distribution and presentation of Lyme borreliosis in Scotland – analysis of data from a national testing laboratory.’
Ref 4: Caroline Millins (et al): An Invasive Mammal (the Gray Squirrel, Sciurus carolinensis) Commonly Hosts Diverse and Atypical Genotypes of the Zoonotic Pathogen Borrelia burgdorfe Sensu Lato Applied and Environmental Microbiology, Volume 81, Number 13, Jul 2015
Competing interests: No competing interests