- Ed Victor rushed to hospital when wife saw crimson ‘bull’s-eye’ mark on leg
- He had contracted Lyme disease – an illness on the rise in Britain
- Disease from bacteria Borrelia, spread by ticks, commonly found on animals
16:03 EST, 12 April 2014
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16:03 EST, 12 April 2014
Ticks feed on animal or human blood
A huge, red mark the size of a grapefruit was the first sign something was wrong. Legendary literary agent Ed Victor had just emerged from the shower in his house in upstate New York last summer when his wife Carole pointed to his leg.
‘On the back of my right thigh was a bright bull’s-eye mark – you couldn’t mistake it,’ says Ed.
The crimson circle with a ring around it is immediately recognisable to many in America’s Northeast, the telltale first sign of an illness that is on the rise in Britain: Lyme disease.
Ed says: ‘I went right away to an urgent care surgery near our house, and the doctor took one look and said, ‘‘Classic Lyme disease.’’?’
The disease comes from a family of bacteria called Borrelia, spread by ticks – small parasitic insects commonly found on animals but which feed on human blood given the chance. They attach for anything from a few hours to weeks, but their bite is painless, so it is often unnoticed.
If the disease is transmitted, the potential symptoms are complex and difficult to overcome. And a growing number of British ticks are now carriers.
In the early stages symptoms tend to comprise headache, weakness, muscle pain and fever – much like flu. Eighty per cent of sufferers in the first few days develop the bull’s-eye lesion, known as erythema chronicum migrans, or EM.
In Europe, our strain of Lyme disease can also cause a purple lump on the ear lobe, scrotum or nipple. But those with EM are at an advantage as it makes diagnosis easier – if a doctor sees the mark.
Ed Victor pictured with Nigella Lawson, on of his clients. The literary agent contracted Lyme disease after being bitten by a tick
Ed explains: ‘I said to the doctor, “Why don’t you do a blood test?†And he said, “I’ve seen thousands of these bright red circles, and thousands of cases of Lyme disease. You have it.�’
The blood test for Lyme disease is not wholly reliable. In many cases, without a positive blood test or EM, diagnosis can be made based on symptoms and likelihood of contact with an infected tick.
For many, however, the disease goes unchecked and undiagnosed. In Britain, where Lyme disease is less common or known, studies suggest as many as 90 per cent of carriers don’t know they have it.
‘Cases in the South of England – as well as across Europe – are increasing,’ says consultant microbiologist Dr Matthew Dryden, Britain’s foremost authority on the disease.
Dr Matthew Dryden, an expert on Lyme disease said the number of cases in the south of England is on the up
‘This could be because of increased housing in greenfield areas, but could also be due to rising populations of deer and ticks, due to global warming.’
With about 1,000 confirmed, treated cases per year (only 15 per cent from infection overseas), if the proportion of undiagnosed incidents is as many as 90 per cent, then up to 9,000 Britons could be suffering debilitating symptoms with no idea what is causing them and nothing to stop the progress of the disease.
As the bacteria spread, symptoms worsen. Dr Dryden says: ‘It affects everyone differently. Some don’t have any symptoms and some, even after successful treatment, have post-infection problems that last for months.’
Alongside the initial flu-like state, exhaustion can set in as well as mental confusion, depression, dizziness and heart palpitations.
Then, for about ten to 15 per cent, facial palsy, meningitis which triggers intense headaches and light sensitivity, or encephalitis, which can prompt memory loss, sleep disturbance and mood changes.
Finally, after a few months, chronic problems can take hold: paralysis, shooting pains, numbness, amnesia, vertigo, panic attacks, weakness in the legs affecting gait, joint problems, and even psychosis.
‘I was one of the lucky ones,’ says Ed, leaning back on a sofa in his office in Bloomsbury, Central London. ‘I was put on a two-week, high-dose course of the antibiotic amoxicillin straight away.’
Another antibiotic – doxycycline – is used for Lyme in Britain. But while reassured about his own treatment, Ed, whose clients include Nigella Lawson, Eric Clapton, Rupert Everett and Roman Polanski, was alarmed by what his doctor said next.
‘I told him I was going back to England and he said, “Under no circumstances go to a doctor over there. They understand nothing about it. Just do what I’m telling you and you’ll be fine.�’
This, combined with the fact that an Irish friend of Ed who contracted Lyme’s ‘went to endless specialist hospitals and no one knew what was wrong with him’, persuaded him to speak out.
‘Many GPs are unfamiliar with it because it’s not very common,’ says Dr Dryden.
Ed Victor said: ‘I was one of the lucky ones’
A couple of days after Ed’s EM appeared, he starting having symptoms. ‘I remember vividly how depressed the disease made me. I’m normally very up, optimistic and enthusiastic. But suddenly I was really low.
‘I could feel this melancholia descend on me. But I knew it was the Lyme disease so I told myself, “I’ll get through this.�’
With the depression came a great loss of energy and an almost constant headache. ‘By the end of the two-week course of antibiotics, the depression lifted but dull headaches continued for a while,’ he says.
Dr Dryden adds: ‘Some patients are given a diagnosis of Chronic Fatigue Syndrome, or fibromyalgia [chronic, unexplained pain].’
Meanwhile, Ed is determined he won’t be put off spending time in his home in the Hamptons – or from golfing, even though he may have been bitten on the course.
‘I’ve had leukaemia and chemotherapy three times so, for me, Lyme wasn’t nearly as bad as that,’ he says. ‘But I will use insect repellent now.’
Cover up and wear repellant
One tragic victim of Lyme disease was Lisa Hole, 44, who took her own life to escape ‘unbearable’ symptoms that had left her needing a wheelchair and sometimes bedbound.
Her husband of 15 years, John Mladenovich, 46, also committed suicide after watching Lisa die.
He was found at their home in Oxford cradling pictures of Lisa, and at the time of his death was being investigated for assisting her suicide.
Lisa Hole took her own life to escape the ‘unbearable’ symptoms of Lyme disease
It is estimated that up to 17 per cent of the UK tick population carry Lyme disease.
Most are in the New Forest, Wiltshire, Exmoor, the South Downs, and the west coast of Scotland, although some infected ticks have been found in London parks.
There is currently no drug to prevent Lyme disease. In 2002, a vaccine was introduced in the US but was later withdrawn because of concerns over side effects.
Lyme spirochetes, the bacteria which cause the disease
The Lancet reported positive results of a new vaccine trial last year but suggested it might not be available for three years.
Once someone is bitten and diagnosed treatment involves antibiotics. The best prevention is to avoid a bite – in wooded, forest areas and long grass, wear a long-sleeve shirt, tuck your trousers into your socks and use insect repellent.
If you find a tick, remove it by gently gripping it as close to the skin as possible, preferably using fine tweezers and pull it steadily.
Never use a lit cigarette end, a match head or essential oils to force out the tick. These can cause the bug to regurgitate its stomach contents, causing infection.
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The comments below have been moderated in advance.
maria31,
salford, United Kingdom,
21 minutes ago
Thank you for this article! I know I have chronic lyme disease and have begged and pleaded with my doctors to test me for it for 30 years, 4 times they have reluctantly tested me and each time they have told me they have lost the results? one doctor even said I will only get a diagnoses if I am prepared to pay hundreds of pounds for a private diagnoses- I can not afford to do that, at the begining I had all the symptons of lyme–bulls eye rash, fever and so on,
many years later after 2 pregnancys I had viral infections-glandular fever, shingles, viral meningitis and was finally diagnosed with fibromyalgia and chronic fatigue, Fibromyalgia for me is a blanket diagnoses but one I am forced to accept, I am over 60 now so maybe it won’t make any difference to my life if I do get a diagnoses, but I am so upset to think I could maybe have been treated and had a better lifestyle if only I had been diagnosed years ago.
dougie,
plaxtol, United Kingdom,
43 minutes ago
My mates son contracted Lyme disease after a visit to Ashdown Forest in Sussex.
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