A tick bite can cause treatable Lyme disease, while long-term symptoms may be due to chronic fatigue syndrome Description:Lemanieh/iStock/Getty Images

Most people who think they have a long-lasting form of Lyme disease, triggered by a tick bite, may really have chronic fatigue syndrome, a panel of UK infectious disease experts said today.

Some people who mistakenly believe they have Lyme disease are endangering their health by taking long courses of antibiotics, leading to other infections such as sepsis, the doctors warned.

Lyme disease is a potentially serious infection that first came to attention in the 1970s, after an outbreak of cases in New England. It is caused by bacteria, passed on by bites from ticks, and often triggers a circular red rash initially.


Untreated Lyme disease can lead to a range of health problems, including joint pain, and heart damage. But if diagnosed in time, the infection can be quashed with a short course of antibiotics.

However, some people who have persistent symptoms believe they have a long-term infection, known as chronic Lyme disease, which needs treating with long courses of antibiotics or other alternative therapies such as supplements. This idea has spread from the US to the UK and some other countries.

Matt Dryden of Hampshire Hospitals NHS Foundation Trust said at a press conference that there was a large overlap between the symptoms usually ascribed to chronic Lyme and those of chronic fatigue syndrome (CFS) – such as fatigue, pain and memory problems. “Most have CFS,” said Dryden. “What clinches it for me is that there’s a great group of these patients in Australia where [Lyme disease bacteria] have never been detected.”

CFS, also sometimes known as myalgic encephalomyelitis, is itself a controversial condition: some think it involves immune system problems, perhaps triggered by an infection, while others believe psychological factors may contribute.

“I think most people who think they have chronic Lyme disease in the UK probably don’t,” said Sarah Logan of the Hospital for Tropical Diseases in London. “There’s so much stigma associated with chronic fatigue. Our treatments and support network [for CFS] are not great.” Logan says she sees at least two people a week in her clinic who have self-diagnosed themselves with chronic Lyme disease in the UK.

Read more: Lyme disease may be more common in the UK than we thought

Part of the problem is that tests for Lyme disease aren’t definitive, said Tim Brooks of Public Health England. One commonly used test checks for antibodies to the bacteria made by the body, but these may not develop until six weeks after exposure, so people can test negative in the early stage of infection.

And some private laboratories in the US and Europe offer unvalidated tests for Lyme disease that are likely to give false positive results, said Brooks. He knows of people trying to raise many thousands of pounds for treatment in other countries.

Dryden and Logan have both known people on long-term antibiotic treatment for chronic Lyme disease who have developed infections with antibiotic-resistant bacteria. There have also been several cases of severe infections caused by people having antibiotics delivered into a vein in their chest, in an attempt to continuously treat their disease.

Lyme disease can occasionally cause long-lasting symptoms, says Dryden, but this is rare. In one study of about 500 people with confirmed Lyme disease, only three reported some fatigue or muscle pain after treatment with antibiotics.

However Julia Knight of the patient support group Lyme Disease UK says a bigger problem is that some family doctors still don’t believe there is any Lyme disease in this country, long-term or not. “They are quick to label people with CFS. It could be that people with chronic Lyme are going misdiagnosed with CFS,” she says.

Many countries are now reporting more cases of Lyme disease, perhaps because of climate change. In the UK, the disease is mainly found in southern England and parts of Scotland and the rates have risen in recent years.