Lyme disease is prone to misdiagnosis and lack of adequate treatment

Currently the laboratory tests for Lyme disease are often inconclusive and there is legitimate patient concern about this.

Owing to the diagnostic problems, some people with Lyme disease are not being recognised as having the disease.

Lack of recognition of cases of Lyme disease, and hence lack of treatment, is causing enormous suffering and loss of quality of life.

During the diagnostic procedure, over-reliance on whether or not a person was at risk of a tick bite may prove unsatisfactory and can amount to including guesswork in diagnosis. This practice may decrease the chance of a person who does have Lyme receiving the early treatment that is so essential. Risk is just one factor amongst many that need to be considered.

Extremely adverse patient outcomes are made more likely if the illness is not promptly, adequately and appropriately treated.

The availability of doctors and consultants with expert knowledge of how to recognise and treat Lyme disease and associated tick-borne disease is currently inadequate. Patients who fall ill with this condition need to be able to see clinicians with relevant expertise. Lyme Disease Action has heard many accounts from patients of being given incorrect information.

Lyme disease is a serious infectious disease and fatalities have been recorded, including in the UK. Severe suffering, sometimes lifelong in nature, is also documented with increasing regularity. If a person with Lyme disease is denied sufficient treatment for a serious bacterial infection, those who take that decision run the risk of breaching the patient’s human right to life.

Lyme Disease Action has evidence that indicates that our concerns about people being undiagnosed or misdiagnosed are legitimate ones.

Lyme Disease Action has evidence that indicates that our concerns about under-treatment or lack of treatment are legitimate ones.

Lyme Disease Action believes the current situation to be wholly unacceptable.

Lyme Disease Action is calling upon the Government to take urgent steps to ensure that people who have Lyme disease are recognised and accorded their full human rights:

By ensuring that people with Lyme disease receive prompt, adequate and appropriate treatment which, in some cases, may be long-term.
By ensuring that more specialist clinicians trained in the clinical diagnosis, treatment and care of Lyme disease patients become available within the National Health Service.
By ensuring that clinical guidelines for diagnosis and treatment of patients are developed for all medical staff and ending over-reliance on current laboratory tests in diagnosis.
By taking steps to ensure that every effort be made to gain a reliable laboratory test or set of tests for Lyme borreliosis (Lyme disease) and closely associated tick-borne diseases.
By ending over-reliance upon a tick bite risk assessment in the diagnostic procedures for Lyme disease.

(See Requires Government Action)

Please help us to help you by making a donation for ‘Lobby for Lyme’ and all our vital work.