Lyme disease 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 new cases per year. However, estimates carried out by Caudwell LymeCo and Lyme Disease UK members suggest that there could be tens of thousands of new cases each year – it is clear that there is a large discrepency in estimations and that the exact number is unknown.
Lyme disease is usually caught by being bitten by an infected tick. There is a possibility that the illness may be transmitted from other vectors or biting insects or 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 the rash can also be atypical and more irregular, which can sometimes lead to a misdiagnosis of 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 Lyme disease 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 due to missing a proportion of cases. At present, there is no gold standard test for Lyme disease which can rule the disease in or out.
What everyone does appear to agree on, is that if caught early, Lyme disease may be easier to treat, enabling the patient to return to full health. When it comes to the existence of chronic Lyme disease, 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. The charity Caudwell Lyme Disease explored patient experiences on the NHS in numerous surveys and results can be found here.
Many patients, frustrated by the lack of care they receive on 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