Health: The body snatcher

It's spread by blood-sucking ticks and can lead to facial paralysis, meningitis and arthritis but, as Angela Howard found out, GPs are often slow to diagnose Lyme disease
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The Independent Culture
It sounds like the plot of a science-fiction novel, a tiny mystery insect injects an alien organism into the body which causes havoc. Far fetched, you might think, but it happened to me. Last summer I was finding it an effort to keep up the usual momentum of family life with two children, Sasha, who was then eight and Tamzin, who we adopted from China, 14 months old. I tired easily and struggled to remember things. At the end of July, I noticed some red circles on my right upper arm; there was a white bump in the centre and the circles grew bigger and redder, roughly five inches by four inches. My husband and I shrugged it off as nothing to worry about.

A week later, an American friend recognised my circles from posters displayed in a doctor's surgery on the east coast of America. She told me I could have "Lyme disease" and urged me to have a blood test.

The next day I went to my local GP's surgery. First I was told that we don't get Lyme disease in this country and then that you could get it, but only in the New Forest. As I hadn't been to the New Forest and this was Berkshire, the doctor said it was unlikely to be Lyme disease and suggested I came back the following week if the circles got bigger. After much insistence, the doctor agreed to give me a blood test to eliminate the possibility of Lyme disease.

The summer holidays were in full swing and all the time I felt something was not quite right. My memory was muddled, my muscles and joints ached, I had blinding headaches, acute hearing, hot flushes, jumpy vision as well as tingling down one side of my body. I felt weepy; my appetite had long gone, I was losing weight and I had diarrhoea and thrush. But eventually the mysterious red circles on my arm disappeared, so I thought there was no need to panic.

In August my doctor rang. My blood test was positive. I had Lyme disease, "whatever that is". The doctor prescribed a 10-day course of the antibiotic oxytetracycline.

Then began the search for more information on "slimy limy", as I called it. My friend Sally, who is a doctor, soon sent me a mile-long fax of reports on the disease, found on the Internet. They were very detailed and recommended antibiotics for four to six weeks. She advised me to eat yoghurt and take two acidophilus capsules after meals, use Canesten against thrush, and take evening primrose capsules and multivitamins to counteract the effects of the antibiotics.

Lyme disease is spread by ticks which transmit a bacterium called Borrelia burgdorferi. Before they bite, the ticks inject an anaesthetic so you don't know you have been bitten and, although they may be attached for 24 hours, they're easy to miss because they are as tiny as poppy seeds.

I couldn't imagine how I had come into contact with it: I have a fear of snakes so never walk through long grass, moorland, bracken or woodland. Ticks are prevalent in areas where deer are common, as the tick feeds on the deer which can be infected with Borrelia burgdorferi. The tick subsequently passes on the organism when it feeds again on its nearest host which could be human, sheep, rabbit, horse, cat or dog.

I showed my doctor the reports and he increased my antibiotics to four weeks. Then I tracked down a doctor who had diagnosed Lyme disease locally, he told me that he believed many cases went undiagnosed because doctors didn't know what to look for. And this was something I was beginning to discover for myself as I heard from other sufferers. I rang a woman who lives nearby and who had had Lyme three years ago. Her doctor had been baffled by her symptoms but treated her for shingles. Eventually one side of her face had become paralysed, and she was given steroids. It wasn't until a laboratory assistant from the New Forest decided to test for Lyme that they discovered what was wrong with her.

Lyme disease was named after Old Lyme in Connecticut in the United States, where a cluster of cases was diagnosed in 1974. Early English settlers named Old Lyme after Lyme Regis in Dorset, and it is possible that they brought the ticks and the disease with their livestock to the New World.

Only 30 per cent of ticks are said to carry Borrelia burgdorferi in this country, so not all tick bites will lead to Lyme disease. In 1997 the Public Health Laboratory Service reported 180 cases of Lyme disease in England and Wales, and 160 in 1998. In the US there were 12,801 cases in 1997. Americans can take heart; SmithKline Beecham has been working on a vaccine for the disease and a slightly different version of the product is being prepared for Europe, where different strains of the disease are prevalent.

Some sufferers outside the US have found it hard to be taken seriously by the medical profession - even if they are members of it. A Finnish psychiatrist, Dr Vartiovaara, contracted Lyme disease in 1987, while attending a conference in Canada. Ironically, he found a blood-gorged tick in an ashtray in his room one morning and took a photograph of it, then thought no more about it. Three weeks later his joints ached and his eyesight deteriorated. His medical colleagues suspected brain cancer or multiple sclerosis. After 16 months he was hardly able to drive a car, type, or work a full day. He could only walk with orthopaedic shoes, keeping close to the walls so he did not fall down.

Soon after this the hospital said there was nothing they could or would do for him. He dictated a farewell letter to a colleague in America who had attended the same conference in Canada. She replied suggesting that he must have Lyme disease and sent him reports about it. After treatment in both the US and Finland, Dr Vartiovaara made slow progress, but in 1992 at the age of 45 he became the first person in Finland to be pensioned off on the basis of Lyme disease. After six years of treatment the organism was found to be still alive in his body.

He says he is now an invalid with a totally unknown prognosis. "I think of the many Lyme patients who remain undiagnosed ... there must be many who never get the tests. They must suffer enormously, running from doctor to doctor seeking help in vain. One of the worst insults is to be labelled a chronic complainer. The point is that if one gets the right diagnosis early, it is very simple to treat."

From my own experience, GPs should be made fully aware of the symptoms and treatment for Lyme disease. If a patient has "flu symptoms" it may not in fact be flu but could be Lyme disease. If left untreated complications such as facial paralysis, meningitis, arthritis, carditis and encephalitis can develop.

It's a long journey back to health for the sufferer of Lyme disease, and an endless one for those who don't realise they have been infected until years later. A year on, it is a relief that my limb- and joint- pains have almost gone and I am learning to live with the fatigue. I feel lucky to have caught the disease relatively early, and the oral antibiotics seem to have killed the organism.

I now view my garden and the great outdoors with suspicion. I am proof that you don't just catch Lyme from areas such as the New Forest, Scotland or Richmond Park. These ticks, which look like tiny spiders, are everywhere - even in towns and cities and can even be passed on to humans by their pets.

From March, when the ticks start to breed, I shall take great care to check that I haven't attracted any tiny tick companions by keeping my skin covered, using insect repellent and checking my family's clothes and skin for ticks when returning indoors.

Although I never saw my tick, if you do find one embedded in your skin it is wisest to cover it with petroleum jelly or suntan cream to suffocate it. Gently remove it with tweezers by grasping it as close to its mouth as possible and lifting carefully with a twisting motion. Make sure the tick is completely removed, then apply antiseptic.