The reality of Lyme disease

The NHS is being criticised for its failure to diagnose and treat sufferers of debilitating Lyme disease. Today campaigners will lobby MPs for immediate changes to what they say is inadequate NHS testing and treatment for the condition.

Early detection is key but many sufferers report having to travel abroad to get a proper diagnosis. Three reports have been commissioned in recent months by the Department of Health - but it will be at least 18 months before they report their findings.

We're joined by Dr Hilary Jones to find out more as well as Phone 4 U founder John Caudwell, who says 11 members of his family has suffered with symptoms the disease for over a decade and believes the government should be doing more to find out more about it.


Lyme disease, or Lyme borreliosis, is a bacterial infection spread to humans by infected ticks. Diagnosing Lyme disease is often difficult as many of the symptoms are similar to other conditions. The best protection against Lyme disease is to be vigilant when walking in tick habitats and avoid getting bitten. Tips from Public Health England include:

  • Keep to footpaths when walking and avoid long grass

  • Wear long sleeves and long trousers tucked into socks in high risk areas

  • Consider an insect repellent, or insect repellent clothing

  • Do a tick check when you come in from the outdoors. Ticks prefer skin folds like the back of the knee, the waist and the armpit. Young children are often bitten on the head so check the neck, behind the ears and the hairline. Don't forget to check pets.

  • If a tick has dug its teeth in, use a special tick-removing tool or fine tweezers to grasp the tick close to the skin and pull firmly upwards


  • Many people with early-stage Lyme disease develop a distinctive circular rash at the site of the tick bite, usually around three to 30 days after being bitten. This is known as erythema migrans.

  • The rash is often described as looking like a bull's-eye on a dart board. The affected area of skin will be red and the edges may feel slightly raised.

  • The size of the rash can vary significantly and it may expand over several days or weeks. Typically it's around 15cm (6 inches) across, but it can be much larger or smaller than this. Some people may develop several rashes in different parts of their body.

  • However, around one in three people with Lyme disease won't develop this rash.

  • Some people with Lyme disease also experience flu-like symptoms in the early stages, such as tiredness (fatigue), muscle pain, joint pain, headaches, a high temperature (fever), chills and neck stiffness.

  • Symptoms should be reported to a GP, who needs to be made aware that you might have been bitten by a tick.

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