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Thousands could have Lyme disease without knowing

Lyme disease is spread to humans through infected ticks. Credit: PA Images

A campaign to raise awareness of Lyme disease has found that thousands of people could be living with the condition, having been diagnosed with something else.

Lyme disease is spread to humans through infected ticks. The NHS says up to 3,000 people are diagnosed with the condition every year.

It can be treated effectively if it’s detected early enough, otherwise those with the disease may develop severe and long-lasting symptoms.

The Fight Lyme Now campaign surveyed Lyme disease sufferers across the UK.

It found almost one in five of those who had a laboratory test on the NHS tested positive for the ‘infective agent’ of Lyme disease after receiving a diagnosis of a different condition previously.

Some of the alternative conditions people had been diagnosed with were chronic fatigue syndrome, psychiatric disorders, autoimmune diseases, irritable bowel syndrome, myalgic encephalomyelitis (ME), multiple sclerosis and Alzheimer's disease.

The overall finding is that there are a lot of people out there with conditions that might actually be infected by the... I call it the sort of 'signature agent' of Lyme disease - and that’s an organism called Borrelia.

– Dr Chris Newton, Fight Lyme Now

What is Lyme disease?

  • Lyme is is classified by the World Health Organisation as an infectious or parasitic disease.
  • It is transmitted to humans by a bite from an infected tick.
  • Lyme disease can affect any part of the body and cause a huge number of different symptoms, including flu-like symptoms and a general feeling of being unwell. A rash might also break out.
  • Treatment with antibiotics is most effective when started earlier, but a delay might mean less chance of a full recovery.
  • More detailed information can be found here.

According to the NHS, around a quarter of a million people have chronic fatigue syndrome (CFS) in the UK.

But the Fight Lyme Now survey found that 16 per cent of people initially diagnosed with CFS eventually tested positive for Lyme disease.

It is possible that thousands of people given a diagnosis of chronic fatigue syndrome could instead have Lyme disease.

The survey also revealed that the accuracy of the test for Lyme disease is around 60 per cent.

The Welsh Government says there's still limited understanding of the disease and that new guidance on diagnosis and management should be introduced next year.

Meanwhile the UK Government has called for caution over private clinic diagnosis.

Megan Boot reports: