Three years ago, a few weeks after a family trip to the New Forest, I started to feel constantly nauseous and tired. A small red patch appeared on my ankle. I turned to the web for some answers, and Google turned up trumps: much to my horror, my symptoms matched some of those for the tick-borne bacterial infection Lyme disease.
My GP was doubtful (we lived in London and I had not noticed any ticks on me) but agreed to a blood test. It came back positive so the rest of my family was tested. My husband and daughter also had it but, ironically, my son – on whom I had spotted a tick – did not. Lyme is like malaria in that you might get bitten by a mosquito but only some of them carry the disease.
Warnings issued last week that Lyme is on the rise – and that the number of cases may be three times higher than estimated – are no surprise to me. When I got it, I was shocked to find how easily it could be transmitted, how unreliable testing for it was, and how awful the consequences were for those who didn’t get the right diagnosis in time.
My symptoms ruined our Christmas holiday and the antibiotics affected my daughter’s health during school exams. But we were fortunate. I subsequently learned that of two others who contracted Lyme in the New Forest, one – a child – was affected neurologically.
Given that the hosts for the New Forest ticks were deer, suffice to say, I no longer felt like crying at the film Bambi and – unpopular opinion alert – I began hoping people would view the deer in Richmond Park not through misty eyes but through sights on a rifle. (I was not alone. A letter to the Times last week asked: “If deer are deemed to be a significant threat to human health, and an increase in the cull is thought to be a reasonable solution, then why are we even hesitating?”)
But my research revealed deer to be only part of the problem: the unpalatable truth is that ticks are carried by other animals, including cats, dogs and birds. The International Lyme and Associated Diseases Society states: “A patient’s residence does not necessarily reflect his or her Lyme disease risk. People travel, pets travel and ticks travel. “Migratory birds carry ticks over great distances,” it adds.
You can’t become immune to Lyme – a lesson that leading media analyst Claire Enders learned first-hand. She has had Lyme twice, with the second bout going undiagnosed for a year as her test results gave a false negative. An eloquent businesswoman from a medical Nobel Prize-winning US family, she became such an authority on the illness that when she told Jeremy Hunt the NHS website’s Lyme guidance was inadequate, the then health secretary had it updated.
Yet she had to work hard to convince her doctors she had it again: “I was asked if I had a ‘Daily Mail illness’. It was demeaning. I felt devastated by the illness, so to be told it was in my head because the test was negative was awful.”
Enders was unable to walk and suffered nerve damage, but is thankfully better after an 18-month cycle of antibiotics and hydrotherapy.
Language is important in raising awareness. She describes it as a “climate-change illness” and says Lyme should be compared with tropical diseases, not flu: “It’s a neural illness.”
Specialists say milder winters have increased the tick population, as fewer are being killed off by freezing weather. Enders points out, “this country is covered with woods and crawling with deer. People forget that birds get ticks, so do cats, dogs and other animals”.
She highlights how the US has dealt with the increase of Lyme – opening up special clinics where antibiotics are given out. UK doctors are more reluctant to prescribe antibiotics due to increased resistance, but Enders argues that, for her and most others, they are the only cure. Around 70% of her US family has had Lyme, and their estate is now sprayed to kill ticks after employees died from the disease.
The National Institute for Health and Care Excellence has identified areas of the UK particularly at risk of the disease. They include the New Forest and Scottish Highlands where businessman Kenny Young got Lyme from ticks in the bracken. He was initially very tired but thought nothing of it until a rash appeared a few weeks later. “Luckily, I knew enough about Lyme to figure it out,” he said. “My doctor was in London and had never come across Lyme before. However, when I explained what had happened, she was very helpful and prescribed me the NHS-recommended course of antibiotics.”
He thinks the rise might be due to warmer weather but also different land usage: “In the past, there was much more bracken burning that kept it under control.”
Young now checks for ticks and says: “Hopefully, the big increase in Lyme across the UK and the US will encourage greater investment in finding a vaccine.”
Vaccination or better testing could help stop cases such as that of the former England rugby player Matt Dawson, whose misdiagnosis of Lyme led to him needing heart surgery. The expensive issue the government needs to confront is the ticks themselves and the bacteria they pass on; more research is needed into this mysterious and complex illness.
My specialist, Dr Darius Armstrong-James, says: “There seem to be other factors we don’t understand. I was told in medical school it was mostly [in the] New Forest and acquired by ticks from deer. Now it seems the animals that harbour Lyme are accepted to be much broader and the geography is obviously very broad.”
After my symptoms had subsided and my course of antibiotics was over, my samples were sent off to Porton Down to check I was clear of Lyme. However – and I suppose I shouldn’t have been surprised by this point– this isn’t as straightforward a process as you would think. Once you’ve had Lyme, your blood will always show a positive test – even when the disease has gone.
Symptoms include circular red mark on the skin, multiple red rashes, fatigue, aching joints, dizziness/vertigo, fever, night sweats, difficulty concentrating, neck stiffness/headaches, numbness or tingling, nausea, palpitations, shortness of breath, and mood changes.
What to wear insect repellent, a hat and long clothing in woodland; check yourself and pets for ticks.