It was a bittersweet moment waking up to the news yesterday of former England rugby star Matt Dawson’s Lyme disease diagnosis, and subsequent heart surgery. As a journalist who is recovering from the disease myself, there is always a feeling of relief when someone with a high profile such as Dawson speaks out about the condition. He’s one of many A-list names who in the last few months have brought essential attention to this underpublicised yet debilitating health crisis. He follows the singer Shania Twain, Kelly Osbourne, and actors Mark Ruffalo, Alec Baldwin and Kirstie Alley, all of whom have shared their stories recently.
Dawson faced a struggle that is all too familiar for Lyme disease sufferers. When he went to his GP and told them he thought he had the illness, the doctor ruled it out “after checking on the internet”. The delay in diagnosis damaged his heart and meant he had to face multiple surgeries. I too was misdiagnosed – for 13 years, in my case – causing the disease to become chronic and much harder to diagnose and treat. I’m yet to meet a fellow Lyme sufferer who hasn’t faced a similar plight. The charity Lyme Disease UK reported this year that only 3% of GPs had completed training in diagnosis of the condition. Public Health England contacted all GP deaneries in England last year but many did not wish to host or support a training session about Lyme and in September 2016 a full-day PHE Lyme disease conference had to be cancelled when only nine people applied to attend.
How common is Lyme disease?
According to Public Health England, no more than 10% of the ticks in question have the bacteria that can then cause Lyme disease. The organisation estimates 3,000 people contract the disease a year in the UK. Diagnoses in the US are much more common, at more than 300,000 a year.
How do the ticks spread the disease?
The ticks cling to grasses or other plants in relatively moist areas (Lyme disease cases have been recorded in all parts of Britain) after hitching rides on deer or other animals. They lie in wait for animal flesh to brush past. When it does, they make the leap, swelling up to the size of a pea as they feast on blood. Doctors advise anyone to check their skin for ticks by sight and by hand and remove them carefully without squeezing their bodies. Only see a GP if a rash or flu-like symptoms then develop – and be sure to mention the bite.
How dangerous is Lyme disease?
Left untreated by antibiotics, the bacteria can spread around the body with various effects including the heart condition Lyme carditis. Deaths are rarer still; a 2011 review of 114 deaths supposedly caused by Lyme disease in the US between 1999 and 2003 concluded that only one could be attributed solely to the effects of the disease.
How do you remove a tick?
Once you find a tick, the key is to remove it as quickly as possible. Use specially made very fine tweezers or you can buy claw-shaped tick-removal tools in pharmacies, outdoor pursuit shops and online. If using tweezers, pull the tick directly upwards – do not twist it – and grab it as close to the skin as possible, to ensure you remove the head and mouth.
Despite initial misdiagnosis, Dawson was fortunate to have the tell-tale indicator of Lyme – a bulls-eye rash – on his back. While his diagnosis was dangerously delayed, that rash, I would venture, actually saved his life. A common misconception among GPs in the UK is that you only have Lyme disease if you have a bulls-eye rash. This is incorrect. It’s estimated that over 50% of Lyme sufferers do not get a rash – and neither did I. In addition, the blood test for Lyme in the first few weeks after infection is often inaccurate, only detecting Lyme 29-40% of the time. “There are doctors who are still waiting for that positive test, and if they can’t confirm it with a test, they’re reluctant to diagnose Lyme, and they don’t treat,” explained Dr Daniel Cameron, a leading Lyme specialist in the US.
GPs – and the British public – need to be made aware of the other indicators of a Lyme diagnosis. Lyme is known as the great imitator. It mimics a host of other conditions including chronic fatigue syndrome, arthritis, fibromyalgia and multiple sclerosis. Most Lyme sufferers will tell you that they were offered a range of incorrect diagnoses such as these before they finally found the true reason for their suffering. If I hadn’t had the means and initiative to send my blood abroad to be tested for chronic Lyme (a test that is not even available in the UK) I would have continued to have been led to believe I was instead a fatigued, stressed and anxious individual with inexplicable debilitating headaches and joint pain, a loss of sensation in my left hand, vertigo and heart palpitations – symptoms that can all be attributed to Lyme if one is armed with the correct knowledge.
Finally, there is a widespread belief that Lyme disease is extremely rare. While there are around 1,000 laboratory-confirmed cases in the UK each year, PHE states that a more realistic number would be around 3,000 per year. Some Lyme charities, however, suggest that the numbers could be in the tens of thousands. Making it a notifiable disease would help give us a better idea of numbers – although this wouldn’t solve the problem of underdiagnosis. This summer, due to a combination of environmental factors, a surge in Lyme is expected in the UK, Europe and the US. Data gathered by the World Health Organisation indicates that the number of cases of Lyme in Europe has increased, on average, by 65% every year for the past 20 years.
A systemic shift needs to occur in medical school training and beyond to educate doctors and healthcare professionals about the dangers of this life-threatening condition. I would urge GPs to take a second look at any patients suffering with chronic conditions with no obvious cause and consider: could they have Lyme disease?
• Holly Rubenstein is a freelance writer and broadcaster
