To answer the question, ‘what is Lyme disease?’, the illness is caused by a spirochaetal bacteria from the genus Borrelia. It is the most common human tick-borne infectious disease in the northern hemisphere and there are multiple strains of the bacteria. It is endemic in many parts of the United Kingdom, particularly in woodland or heath-land areas as well as urban parks and gardens. Around 1,000 serologically confirmed cases occur in the UK each year, however Public Health England state that the true number could be around 3,000 per year. Caudwell Lyme Disease charity and Lyme Disease UK estimates that there could be as many as 45,000 cases.
Lyme disease is usually caught by being bitten by an infected tick, but there is mounting evidence to suggest that the illness may be caught from other vectors or biting insects or potentially passed on congenitally, sexually
or via blood, tissue or organ donations. Further research into transmission methods needs to be done to establish whether these other routes of transmission are possible.
Symptoms can start with the characteristic bull’s-eye rash, but it can also be more irregular and misdiagnosed as ringworm or cellulitis. There are varying figures for the number of patients who do not recall a rash ranging from around 20% to 50%. The initial symptoms of a widespread infection include flu-like symptoms, perhaps with a fever, sore muscles, photo-phobia, and a stiff neck. Left untreated, the infection can spread anywhere in the body leading to around 70 recognised symptoms . People can develop issues with their endocrine and neurological systems and experience musculoskeletal, cardiac, dermatological and neuropsychiatric problems.
Patients do not always remember a bite or the characteristic bull’s eye rash and the NHS two-tier testing has been widely criticised as inaccurate and missing a proportion of cases. What everyone does appear to agree on, is that if caught early, Lyme disease is easy to treat and usually patients return to full health. However in cases of longer term infection, the question of ‘what is Lyme disease?’ becomes harder to answer as there are two schools of thought within the medical profession. One side feels that a short course of treatment is sufficient to eradicate the disease and that there is no requirement for longer term treatment as the bacteria simply cannot persist. The other argues that if the bacteria persists or was never treated in the first place, the clinical picture becomes far more complicated and patients need long term treatment. It is also thought by some members of the medical and scientific community that the presence of other infections, either from the same tick bite or developed elsewhere could be a possible reason for a wide variation in disease patterns, progression and treatment outcomes. Therefore, Lyme disease is a hotly contested subject surrounded by heated debates which frequently play out in the media across the world.
There is a large variability in knowledge among clinicians within the NHS, ranging from GPs and neurologists who claim there is no Lyme disease present in the UK, to those who are far more open to the latest research and advancements. The numerous uncertainties surrounding so many aspects of the disease are detailed by the findings of the James Lind Alliance, whose project suggests areas in which more research is required. Caudwell Lyme Disease explored the Lyme disease patient experience on the NHS in numerous surveys and results can be found here.
Many patients, frustrated by the lack of care they receive in the NHS, turn to private doctors and clinics and undergo testing by foreign laboratories whose results are not accepted by the NHS.
N.B. We are not medical professionals