Department of Health plans network of experts to support GPs and hospitals as concern grows about spread of potentially debilitating condition

Britain had a surge of cases this summer of Lyme disease, a tick-borne illness that in its most serious form can result in chronic fatigue, pain, confusion, depression-like symptoms and memory loss.



New figures show that after a two-year pause in the steady rise of cases, the number of acute cases – people who test positive and show symptoms of the disease – nearly doubled this summer, the peak season.

Public Health England also revealed that tests for the disease have increased five-fold in the past two months – though this is likely to be affected by publicity around the case of the billionaire John Caudwell and his family,who were diagnosed with the illness.

Growing concern about the spread of the disease, thought to affect 2,000 to 3,000 people in the UK each year, has prompted ministers to decide to set up a network of regional experts to help diagnose and treat the problem.

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Theories for why numbers appear to be rising include a growing number of ticks in some weather conditions; more wild mammals that host them; an increase in the number of visitors to areas where they live; and greater awareness leading to more patients visiting GPs and therefore more diagnoses.

Other celebrities who have gone public after contracting the illness include the singer Avril Lavigne and the actor Richard Gere.

“The disease is spreading, there’s no doubt about that,” said Stella Huyshe-Shires, chair of the charity Lyme Disease Action (LDA).



Although Lyme disease was first described in Germany in 1883, the first recorded case in the UK was in the 1970s.

“Any disease that comes in spreads,” said Huyshe-Shires. “It’s spreading through the population of ticks, animals are picking it up so it goes to more and more ticks, so more and more people are contracting the disease. It’s an emerging disease in this country.”

Health officials stress that, in the vast majority of cases, people bitten by infected ticks recover fully from the flu-like symptoms after a course of antibiotics.



If not treated, however, the bacteria can move into the nervous system, the heart and the brain, causing more extreme symptoms that take much longer to treat.

There is growing evidence that some sufferers go on to have symptoms including severe pain, fatigue and neurological problems for many years. The notion of chronic Lyme disease is still controversial, but the health minister Lord Prior told a House of Lords debate in October: “Some patients suffer debilitating illness with symptoms that persist after treatment for several months or longer.”

Prior revealed that the Department of Health is to set up a network of experts around the country to support GPs and hospital staff, many of whom have never encountered the disease.

Facebook Twitter Pinterest Experts warn against people being put off visiting rural areas and parks because of what is still a small risk of contracting Lyme disease. Photograph: Daniel Leal-Olivas/PA

Following claims that some doctors are unable or unwilling to diagnose the symptoms, the department has also asked the National Institute for Health and Care Excellence (Nice) to draw up official guidance on diagnosis and treatment. This is expected to take two years.

Public Health England is part of a study trying to identify the highest risk areas in the UK.

Positive blood tests for Lyme disease in the UK – which include people who show no symptoms – doubled from 586 in 2004 to a peak of more than 1,200 in 2010, and have remained over 1,000 since.



Total cases in England – the bulk of all UK diagnoses – peaked in 2012, then fell in 2013 and 2014, and so far this year are running at the same rate as 2014, according to Public Health England.



But it is the latest figures for acute cases that are causing concern: in the first nine months of this year there were 429 acute cases recorded in England, more than for the whole of 2014 (386).

This year’s figures for Scotland – which accounts for most of the remaining UK cases outside England – are not yet available.



There are risks, but it would be a tragedy if people were dissuaded from enjoying the great benefits of the outdoors Lord Trees

The British Society for Immunology estimates that the real number of cases in the UK each year is 2,000 to 3,000. One reason is that patients with a clear rash do not have to be referred for blood tests, so are not included in official figures.



LDA estimates the tally is even higher. A GP practice in Scotland had two high-profile cases of Lyme disease, prompting huge awareness and a big increase in patients coming forward: they found 10 times the number of cases counted in official figures. Based on that, LDA says the true figure for the UK could be as high as 15,000.

However, experts warn against people being put off visiting rural areas and parks because of what is still a small risk.

“There are risks, but …it would be a tragedy if people were dissuaded from enjoying the great benefits of the outdoors for fear of Lyme disease,” Lord Trees, a professor of insect parasitology, told the House of Lords.

Case study: Laura

One patient who had to wait more than three years for treatment was Laura, who has asked that only her first name be used.

In January 2012 she noticed a red bullseye rash on her right shin. The rash is the most distinctive feature of Lyme disease, but Laura was not aware of that. A couple of months later, she said, she began to feel “foggy, confused, forgetful”, and it was “hard to make decisions, hard to think, hard to read, hard – pretty much – to use my brain”.

Despite living close to Richmond Park in west London, where Lyme disease is known to exist, GPs thought the most likely cause was chronic fatigue.



Months passed during which Laura gave up her job as a civil servant to focus what energy she had on her two primary school age children.

The turning point was when Laura read an article about Lyme disease and recognised a picture of the erythema migrans rash. A blood test came back negative, but this was not decisive: medics test not for the bacterial infection but for the anti-bodies that the body makes to fight it, so patients tested too soon or too late will often not record a positive result.



A specialist was “confident” it was Lyme disease, though cautioned it was too late to treat it with antibiotics. Laura pressed for a lumbar puncture, which showed she had an inflamation of the brain - another indicator she possibly had the illness.

This summer she was finally given antibiotics, which she said “seemed to help”. She is now working in a local school. “I’m optimistic [though] I’m not completely clear.”