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lyme disease experience Survey

In response to requests from several outdoor organisations, the survey will remain open until the end of April 2024. 


We’ve had an amazing response with hundreds of submissions and are very grateful 

to everyone who has taken the time to respond. 

Survey Link

We asked to hear from people with any experience of Lyme disease, whether mild or severe, fully recovered or with ongoing symptoms, or those who were caring for someone with Lyme disease.

Lyme disease is a bacterial infection caused by the spirochaete Borrelia burgdorferi. It occurs worldwide, is increasing in incidence and is the most common tick-borne disease in the northern hemisphere. It affects children and adults of all ages and although many patients with Lyme disease make a full recovery, others remain ill even after antibiotic treatment. 


The NICE Guideline on Lyme disease has acknowledged  ‘the lack of epidemiological data on the incidence, clinical features, management and outcome of Lyme disease in the UK’. Similar issues exist in the Republic of Ireland and elsewhere in the world. This lack of  information makes it difficult to drive improvements in diagnosis, treatment and care. 


Members of the LRC team developed this survey to capture the experiences of those affected by Lyme disease, including diagnosis, treatments and outcomes. The intention is to support development of patient-centred Lyme disease data that can be used to drive meaningful change for people with Lyme disease.

The survey is anonymous.

Survey Link

Link to FAQs

Thank you for completing the survey. We hope your contribution, combined with others will highlight the lived experience of Lyme disease.


If you would like to stay updated on the survey findings and other LRC activities please share your email address via this link share your email address

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