Lyme disease is caused by Borrelia, a spirochete bacteria. It’s the most common tick-borne infectious disease in the northern hemisphere and there are multiple strains of the bacteria. Lyme disease is endemic in many parts of the United Kingdom, particularly in woodland or heath-land areas but disease carrying ticks can also be found in cities and gardens.
Transmission of Lyme disease can occur when bitten by an infected tick. Other modes of transmission include from mother to baby – congenitally or through breast feeding. Although Borrelia has been found in biting insects such as mosquitoes and spiders, there is not yet enough research to prove that the disease can be transmitted via them. However, we have spoken with several patients who have developed an EM rash and contracted Lyme disease without a tick bite.
Blood, tissue and organ donation, along with sexual transmission are all cause for concern, but again there is not enough research being done in this area. The CDC state that, “Although no cases of Lyme disease have been linked to blood transfusion, scientists have found that the Lyme disease bacteria can live in blood that is stored for donation.” We would always advise Lyme patients past and present, to avoid donating their blood or tissue.
Symptoms can start with an erythema migrans (EM) rash, often described as a bulls-eye rash, but it can also be more irregular, which sometimes leads to a misdiagnosis of ringworm or cellulitis. It’s important to note that not every Lyme disease patient will experience or remember a rash, as figures state that the rash appears in two out of every three Lyme patients but only one in three of those may actually notice it! It can appear anywhere between 3 and 33 days of infection and will likely increase in size. We advise patients to draw a ring around suspicious looking rashes to track any potential changes.
Physical 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 don’t always remember a bite and the NHS two-tier testing has been widely criticised due to missing a proportion of cases, the ELISA has a huge, false-negative rate of 66.8% in early Lyme disease. 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 should be easy to treat, enabling the patient to return to full health. The longer an infection is left untreated, the harder it will be to combat.
Chronic Lyme disease is not a medically accepted term in the UK, but it is thought to be the condition that occurs when treatment for Lyme disease has failed and the patient is left with long-term symptoms and complications. Some patients with long-term undiagnosed Lyme disease may also refer to their condition as chronic, because the actual word, chronic, describes something that can persist for a long time or constantly recur.
Research shows that the Borrelia bacteria can persist, even after intense treatment, and it is also thought by some members of the medical and scientific community that the presence of other infections, could be a possible reason for a wide variation in disease patterns, progression and treatment outcomes.
There is variability in knowledge among NHS clinicians, from those who have little or no knowledge of Lyme disease at all, to those who have completed the RCGP Lyme disease course and those who read and partake in vital Lyme disease research.
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. The charity Caudwell Lyme Disease explored patient experiences on the NHS in numerous surveys and results can be found here.