Caudwell LymeCo: the British Lyme research charity

Boy with dog Sian Evans 1How do you catch Lyme disease?

The commonest way to catch Lyme disease is from a tick bite. Many people are unaware that they could catch Lyme disease just by sitting on the grass in their own garden, or even from playing with their pet indoors. Find out how to protect your family and pets >>

tickEvery year, there are 65% more Lyme disease cases than the previous year

The European Centre for Disease control and the WHO have recorded this growth rate in Europe for 20 years, but now it may be accelerating. This year, researchers at Bristol university have found 1 dog in 3 in the UK carrying a tick. The dramatic increase in tick numbers may be driven by global warming. If the current growth rate continues, Lyme disease will be an official epidemic in the UK by 2028. Read more about the rapid spread of Lyme disease >>

Adam Hughes Photography-1950-2How do you know if you have Lyme disease?

Lyme can start slowly and feel like flu, or hit people like a sledgehammer. One third of people who catch Lyme disease develop a chronic infection, which leaves 75% of its victims too ill to work for the rest of their lives. It can imitate dozens of other illnesses, including thyroid disease and mental illness, and typically causes severe exhaustion and chronic pain. The commonest trigger of death from Lyme disease is heart conditions, according to the American Centre for Disease Control. Lyme disease can be cured if diagnosed and treated as soon as you catch it. Learn to recognise the symptoms of Lyme disease >>

Philip and Holly - CopyPublic Health England admits only 13% of UK Lyme disease victims are counted in official statistics

Lyme Disease needs quicker diagnosis, more accurate testing and more effective treatment in the UK, and worldwide. The Caudwell Lyme Disease charity’s mission is to get proper recognition and treatment of this devastating disease from the UK government and Health Services. John Caudwell recently explained some of the problems on This Morning to Philip Schofield and Holly Willoughby.

 

Child - CopyWhat is it like having Lyme disease?

“I am only eleven, and have been unable to run around and play with my friends for almost two years,” one patient told Caudwell Lyme Disease. Another explained, “With no way of explaining to anyone why I was permanently ill, I had to struggle on with no knowledge of my true condition. Imagine that. Even people with cancer can explain why they are ill. I never could – not even to myself.” Visit our patients’ page to read more stories of living with Lyme disease >>

jeremy-hunt - CopyThe average Lyme patient costs the NHS more than the national average wage every year

This is based on the results of the Caudwell Lyme Disease survey of 500 uncured Lyme patients. We also found that 75% of long-term Lyme patients are too ill to work full time, or at all; and that 29% of patients are ill for 10 years before they get a Lyme disease diagnosis. Most patients want antibiotics to tackle their infections instead of the painkillers, anti-depressants and irrelevant investigations they are usually prescribed. John Caudwell and Veronica Hughes of Caudwell Lyme Disease met Health Minister Jeremy Hunt to ask him why NHS resources are being drained in this way. He promised to commission an independent enquiry. Read the survey results >>

Adam Hughes Photography-150594% of people with Lyme disease have at least one other chronic infection

For doctors to understand why Lyme victims are so hard to cure, they need to stop thinking of Lyme as an isolated  infection. It is usually part of a whole collection of illnesses that damage the immune system; we have nicknamed this condition LymeCo. The average tick carries 16 different types of bacteria and viruses, so the majority of people catch more than one disease when bitten, and others once they are chronically ill. Find out about the other risks of tick bites >>

John CaudwellWhat made Phones4u founder John Caudwell create a charity to help victims of Lyme Disease?

Entrepreneur and philanthropist John Caudwell has declared that helping people with Lyme disease and its common co-infections might become the most important thing he will do in his life. He has pledged to donate all the operating and administrative costs of the charity from his personal wealth. Find out why >>

montagnier_LucDoes Lyme infection cause other chronic diseases? Nobel Prize Winner Luc Montagnier explains the clues.

A number of scientists have noticed signs suggesting bacterial infection in many chronic diseases of unknown cause, including Multiple Sclerosis, Alzheimers, Chronic Fatigue Syndrome, Fibromyalgia, Autism, ALS and Motor Neurone Syndrome, amongst others. Here, Professor Montagnier, who won the Nobel Prize for discovering the HIV virus that causes AIDS, outlines some of the clues which should be researched.

Avril-Lavigne - CopySinger Avril Lavigne tells ABC News how doctors dismissed her when she caught Lyme Disease

Avril Lavigne breaks down in tears as she explains to an ABC reporter why seeking a diagnosis for Lyme disease was the worst time of her life. Being wealthy and famous gave her no protection against suffering the very same dismissal and mistaken diagnoses as so many others whose lives are brought to a standstill by Lyme disease.

AmyTan41Bestselling author Amy Tan talks of the devastating effects Lyme disease can have on the mind

Author of the global sensation “The Joy Luck Club” and other bestselling novels, Amy Tan describes suffering Lyme-induced hallucinations and other terrifying symptoms whilst seeing one specialist after another, desperately seeking a diagnosis. Eventually, like many Lyme sufferers, she realised for herself that she had Lyme disease when she recognised a picture of a Lyme disease rash that looked exactly like her own.