As the 2010 Lyme disease healthguide pathway on the NHS Map of Medicine states: “incidence of Lyme disease in the UK is not well documented but there are an estimated 1,600-2,600 cases of Lyme disease annually: of the 600 confirmed cases in 2005, 500 cases were acquired in the UK and 100 abroad.”

However, a 2012 Bristol University survey of pet dogs indicates Lyme disease risk much greater than previous estimates suggest. As the Bristol University study stated:

“Ticks infected with the bacteria that cause Lyme disease may be considerably more prevalent in the UK than expected, according to new research from the University of Bristol that used pet dogs as ‘sentinels’ for human disease risk.”

Dr Klaus Kurtenbach from Bristol University stated in 2007:

“In France they have diagnosed 10 times as many cases as here [of Lyme Disease]” (…)

“Yet we’ve found the same number of ticks here carrying the disease.”

“Dr Kurtenbach and his colleagues believe British doctors are failing to spot the symptoms of the disease.”

Dr Bruce Alexander stated in 2012:

“Confirmed cases of Lyme disease are rising rapidly, with Scotland’s chief medical officer reporting an elevenfold increase in the past decade. Unfortunately, it’s notoriously difficult to diagnose and the symptoms are often mistaken for other conditions. Consequently, many sufferers are not tested so the true number of Scots affected is potentially far higher than the 304 cases recorded in 2010.

“A recent audit of patients at a Perthshire Medical Practice found a ratio of confirmed cases equivalent to 125 per 100,000 people. Applying this ratio across Scotland, there could be around 6,500 people contracting Lyme disease each year, the vast majority going undiagnosed and untreated.”

Currently, as many people who have Lyme Disease or other tick-borne infections are misdiagnosed with other diseases, such as CFS, M.E., fibromyalgia and various other conditions, the incidence rate of tick-borne infections in the UK is likely to be much higher than is currently acknowledged. For example, CFS/ME is thought to affect around 250000 people in the UK. It is unknown what percentage of those people actually have a tick-borne infection. As this video of French Doctors show, many children who were previously diagnosed as being autistic have responded to long-term antibiotics because they actually have a bacterial infection, including Lyme Disease. This paper in the British Journal of Medical Practitioners gives many examples of chronic bacterial and/or viral infections, such as Lyme Disease, as common features of many different progressive chronic diseases.

If this poll is anything to go by, around 14% of cases of Lyme Disease are from the South East of England. We are not aware of detailed statistics on incidence rate in Sussex.

As the HPA says, “Since 2000, an average 15% of cases are known to have been acquired abroad. The remaining cases are predominantly those acquired in the United Kingdom, but for some the travel history is not known. Cases have been reported from most counties in England and Wales, with infection occurring most frequently in Exmoor, the New Forest, the South Downs, parts of Wiltshire and Berkshire, Surrey and West Sussex, Thetford Forest, the Lake District and the North York Moors. Cases have been reported occasionally from many other areas with suitable tick habitats.”

Ticks are present all over the UK!

These articles show that it is a problem in Sussex

Lyme disease warning in Sussex – The Argus – 21st April 2011 – By Siobhan Ryan, Health Reporter

Sussex Lyme disease warning – The Argus – 7th May 2010 – By Siobhan Ryan, Health Reporter

A little tick started things going wrong – Mid Sussex Times – Thursday 18 October 2007

Ticks and mites recorded in Sussex , Sussex Biodiversity Record Centre, OCCASIONAL PAPER 13

Living with Borreliosis (Lyme disease) – Sue’s story – how she got it in West Sussex

Professor commits suicide after catching dementia from tick bite – London Evening Standard

Lyme Disease nationally

Deadly Lyme disease on increase as more of us spend time outdoors – The Telegraph – 16 May 2011

Bruce Alexander: More must be done to combat Lyme disease – The Scotsman – 31 August 2012

Thousands of Scots at Lyme disease risk due to poor public awareness and lack of data – 19 August 2012 – Orbit Communications

Why the ‘Lyme’ Wars are coming to Britain – Kate Bloor – healthmatters magazine

Survey of pet dogs indicates Lyme disease risk much greater than previous estimates suggest – 25 January 2012 – Bristol University study – “Ticks infected with the bacteria that cause Lyme disease may be considerably more prevalent in the UK than expected, according to new research from the University of Bristol that used pet dogs as ‘sentinels’ for human disease risk.”

Biting Back Against Lyme Disease – ScienceDaily (Sep. 5, 2012)

Patient Stories on Lyme Disease Action website

Patient Stories on Patient Opinion website

The many faces of Lyme disease. The famous, not so famous and Lyme. – Stories from many different people who have had Lyme Disease and other tick-borne infections on the Borreliosis and Associated Diseases Awareness UK website.

Lyme neuroborreliosis – Rapid Response – BMJ – 25 June 2012 – Caroline J Rayment, GP partner.

Do repeat courses of antibiotics help? – Lyme Disease Action website – 21 June 2012 – Case study of a nurse, Diane, in Cornwall.

Insect bite in the park left me in agony for SIX years – Daily Mail – 28 August 2012

Doctor’s Diary: If you don’t think it, you won’t diagnose it – The Telegraph – 02 Jul 2012 – Dr James LeFanu – “All this took around six months, after which the cardiologist discharged her, even though her symptoms were unchanged. Despairing, she sought a medical opinion abroad at her own expense – and within a couple of weeks she was informed she had a positive blood test for the tick-borne infection lyme borreliosis.”

LYME LIFE – Getting diagnosed with Lyme Disease – Joanne Drayson tell her story! – July 2012 – The Patient Experience

Tony’s fight against rare Lyme Disease – Thurrock Gazette – Monday 16th July 2012

Mother discovers mysterious medical condition that has left her feeling ‘like a 90-year-old’ was caused by a childhood tick bite – Daily Mail – 17 January 2012

“Lyme Disease and Aberdeen Royal Infirmary” – Patient Opinion – 2012

Ticks can make you seriously ill – Personal account – June 2011

Perthshire woman tells how Lyme disease has devastated her life – Perthshire Advertiser – Apr 15 2011

HUTTON: Mum Ruth Black left virtually bed bound as NHS ‘fails to identify illness’ – February 09, 2011 – this is total essex

Worker sues Forestry Commission over Lyme Disease – BBC – May 2011

Top North doc warns of viral illness increase – Jul 5 2009 – Sunday Sun

Lyme disease – the danger that can lie in wait on an innocent country walk – Daily Mail – 21 November 2009

My battle to make the NHS pay out for my treatment – 6th May 2009 – Daily Gazette

Dad battles deadly tick bite illness after Lake District trip – 26th October 2009 – The Westmorland Gazette

Sidbury Lyme disease sufferer’s call – this is Exeter – June 12, 2009

Schoolgirl fears she could be paralysed by tick bite – The Telegraph – 15 Jul 2008

Bite from tick on holiday led to death leap – The Telegraph – 11 Apr 2008

Teachers Warning over tick bites – BBC Online – 27 August 2007

Park needs ‘tick warnings’, says ill man – This Is London – 20 August 2007

Fears over Lyme Disease as ticks flourish – 16 July 2007 – Daily Mail

Lyme Disease – Inside Out – BBC Online – February 16, 2007

Living with Lyme disease – BBC Nottingham – 29/08/06

How a tick bite destroyed the career of an athletics champion – Daily Mail – 20 June 2006

In Europe

When looking at the incidence rate of Lyme Disease in other European countries, it is much higher than the estimated incidence in the UK (2,500 per year over the whole of the UK including Scotland). This also suggests that the incidence rate of Lyme in the UK is vastly underestimated.

France (over 10 times the incidence as the UK’s)

“In France, the incidence has varied considerably from one region to another and it is estimated between 12,000 and about 15,000 the number of new cases per year. ”

“The eastern and central regions are most affected, with an incidence of up to more than 200 cases/100,000 population in Alsace.”

Source: La maladie de Lyme, Institut Pasteur

Germany (148 times the UK rate)

“An incident diagnosis of LB was coded in 14,799 and 16,684 individuals for the years 2007 and 2008, respectively, resulting in an incidence of 261/100,000 cases annually in the DAK cohort. Although the extrapolation of these numbers may lead to an overestimation due to clinical misdiagnosis and/or miscoding, our findings translate into 213,912 annual incident cases on a population-wide scale, which suggests more LB cases in Germany than projected previously in the available literature dealing with this topic.”

Source: Research Article: Evaluating Frequency, Diagnostic Quality, and Cost of Lyme Borreliosis Testing in Germany: A Retrospective Model Analysis, Clinical and Developmental Immunology Volume 2012 (2012)

Netherlands (20 times the UK rate)

Our nearest neighbour, the Netherlands, has 43 per 110,000 (slightly different use of 110,000 instead of 100,000

Source: Verspreiding – Epidemiologie

Belgium (45 times the UK rate)

“The overall Belgian incidence rates in the SGP practice in 2008–2009 were 18.65 (95% CI 17.29–20.08) per 10,000 persons for tick bites and 9.02 (95% CI 8.08–10.03) for erythema migrans.”

This means 90.2 per 100,000 for actual infections.

Source: Incidence and management of presumption of Lyme borreliosis in Belgium: recent data from the sentinel network of general practitioners, Europe Journal of Clinical Microbiology and Infectious Diseases, Volume 31, Number 9 (2012)

Norway (about 40 times the UK incidence)

Depending on the region, up to 84 per 100,000. They have really detailed maps of the worst areas on the west coast, and south coast, which is where most people live.

Source: Aktuell infeksjonsepidemiologi i Sogn og Fjordane, 2011

UK

The UK’s Health Protection Agency gives the figures for England and Wales as being only 1.76 per 100,000…

“In 2011, 972 cases of Lyme borreliosis were identified in England and Wales residents, an incidence rate of 1.76/100,000 total population. ”

Source: Lyme borreliosis in England and Wales 2011, HPA webite.

Globally

Global Challenges in Diagnosing and Managing Lyme Disease—Closing Knowledge Gaps – United States House Committee on Foreign Affairs hearing – July 17, 2012

May Tables Private Members Bill on Lyme Disease – June 2012 – “In response to the growing threat of Lyme Disease in Canada, Green Party Leader Elizabeth May, MP Saanich-Gulf Islands, today introduced a Private Members Bill to create a National Lyme Disease Strategy.”

The doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist – The Washington Post – March 5 2012

Readers describe dealing with Lyme disease and feuding with health-care providers – Washington Post – March 12 2012

Ticked off: 10 years living with Lyme disease – MSN – 6/9/2008

En blodig historie – article outlining the situation in Norway and looking at the BCA clinic. Dagbladet. Read English translation here. – 5th August 2012

Karl Mcmanus Foundation in Australia

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