Lyme disease cases have quadrupled
Growth in housing and climate change blamed for quadrupling of cases in little more than a decade
Soaring numbers of people are suffering from the bacterial infection Lyme disease, according to new figures.
The number of confirmed cases has quadrupled in just 12 years, NHS laboratory reports disclose, with more 1,100 people diagnosed in 2013, the most recent year for which numbers are available.
Experts believe the increasing incidence of the condition, which can cause neurological damage and crushing fatigue, is down to factors including:
- increasing numbers of housing developments in rural areas
- changes in Britain’s climate, with warmer winters prolonging the lives of ticks which host the bacteria
- immigration from countries in central and eastern Europe where the infection is more common
- The bacteria is carried by infected ticks which are usually found in woodlands.
However, officials from Public Health England have admitted they cannot discount the theory that transmission through a blood transfusion could theoretically be possible, although they are not aware of any cases.
The statistics revealing the growth of the disease come after billionaire Phones4 U founder John Caudwell and other families spoke about their ordeals.
Mr Caudwell said he feared the infection could be transmitted between humans after he, his ex-wife and three children have all tested positive for it.
Karen Smith, 51, from Northern Ireland, told the Sunday Telegraph she believes she may have contracted Lyme disease after undergoing a blood transfusion in 1987 while giving birth to her first child and may have passed it on to her children.
She and her husband, Mervyn, have both tested positive for the disease at a clinic in Germany and are awaiting the results for their two eldest daughters, aged 28 and 25.
Dr James Logan, senior lecturer in medical entomology, London School of Hygiene and Tropical Medicine, said: “All the scientific evidence shows that it is not transmitted from human to human and that it’s by a tick bite.”
But Mr Smith said his wife had been suffering from constant joint pain and chronic fatigue for more than a decade which left her reliant on heavy doses of pain relief.
In recent years, he has begun suffering from headaches and vision problems, he said. Mr Smith believes his wife may have caught the disease from a blood transfusion and that she had then passed it on to him.
NHS tests on his wife proved negative and since then Mr Smith said he has spent thousands of pounds on the search for a diagnosis and treatment, before the positive diagnosis in Germany.
"I spent £10,000 over the last ten years trying to find out what is wrong with my wife,” he said. “None of us can get treatment here in the UK.”
Dr Matthew Dryden, a consultant microbiologist from Public Health England (PHE), said it was "theoretically" possible it could have been passed on through a blood transfusion but said he has "never heard of it".
Laboratory reports collected by PHE show the number of cases confirmed by blood test has quadrupled since 2001, to 1,112 cases in 2013. However, PHE estimates the true number of new cases each year is around 3,000.
The former head of the National Lyme Disease testing Service suggests each confirmed case should be multiplied by 10, meaning more than 11,000 cases a year.
Tests for the infection are not always reliable, and some patients are treated without ever being tested. Diagnosed cases of Lyme disease can be treated with antibiotics, but if left untreated neurological problems and joint pain can develop months or even years later.
There are five strains of the disease, three of which are responsible for most of the Lyme disease in Europe.
One strain of the disease causes most of the cases in America, where there were 20,000 cases reported last year. The number of areas reporting cases has increased by 320 per cent in the last 15 years.
In recent years, Austria, the Czech Republic, Slovenia and Slovakia have all reported high levels of the infection.
Meanwhile, many GPs in Britain remain ignorant of the disease, charities and specialists say, meaning many sufferers are left to deteriorate for years.
Stella Huyshe-Shires, chair of Lyme Disease Action said other countries, such as the US, are better at ensuring patients are tested.
“They make more of a fuss about things there because healthcare is all private so if you don’t get a proper diagnosis your insurance won’t cover you so there’s a lot of pushing for research,” she said.
Many sufferers who have had negative NHS tests say they have been found to be positive of the disease, after going to private firms for checks, often abroad.
Alison Larnder, 34, a professional singer who trained at The Royal Academy of Music, was diagnosed with Lyme disease in February, after flying to Norway for private tests, after three NHS tests were negative.
She says she became ill last year after she believes she was bitten by a tick at an Oxfordshire music festival.
“I was very ill straight away,” she said. “And then I got a bit better and then gradually got very lethargic, very tired, pain and fatigue all over my body. It went on for a while. It didn’t occur to me that the creature could be the root cause.
“I kept going back to my GP she kept doing tests, but could not diagnose me with anything."
In February she went to Norway for tests which found positive for the disease after the NHS ones came back negative.”
Dr Logan from the London School of Hygiene and Tropical Medicine, believes far more needs to be done to tackle the challenge.
“The Government should be doing an analysis of the whole process,” he said.
“The majority of Lyme disease sufferers will say the system didn’t work for them - the diagnosis was too late, they didn’t the get the tests early enough - and for some that means it’s too late and they have been left with a life threatening condition. We need a review of the system.”
Dr Dryden said the tests offered by the NHS are the same as those offered by other “conventional” healthcare systems.
He believes some clinics are incorrectly diagnosing people with Lyme disease, when in fact they are clear of the illness, but suffering from other chronic diseases.
“A lot of people have chronic symptoms which prove impossible to diagnose – I think Lyme disease has often been hijacked as a possible cause,” he said.
“In some cases, clinics are giving diagnoses of Lyme without testing for the disease, but using tests which show an immune response which could indicate it – some of these tests will be positive in three quarters of cases,” he said
He also suggests soaring numbers of homes being built on green belt land in recent years could also be fuelling the rise.
“We are seeing more housing developments in relatively rural areas, homes being built on what was scrubland so it could be a factor,” he said.
Health officials advise wearing long sleeves and light coloured clothes when out and about in the countryside.