Survey on Lyme disease care on the NHS: patients’ quality of life

Caudwell Lyme Disease charity ran a survey of 500 Lyme disease patients living in the UK, from February to April 2016.

One question asked patients: “How has your quality of life changed as a result of catching Lyme disease?”

We received 421 written responses to this question. Some of them show the desperation in which many uncured Lyme disease patients live. Others show the symptoms of neuroborreliosis, and the effect this has on its victims’ ability to explain their plight. We think many of the responses will shock you, and some will move you to tears.

Click to download all the responses in PDF format.

These are the exact words of our case studies. We have not altered them in any way, as some of them illustrate a particular neurological symptom of Lyme which resembles dyslexia. Some patients, who have previously been able to spell and write very coherently, lose this ability.

 Quality of life 1 Quality of life 2 Quality of life 3 Quality of life 4 Quality of life 5 Quality of life 6