Good to see a sensible article in the Scotland on Sunday.
'One bite from this insignificant looking insect can lead to a disease that can take years to shake off'
Published Date: 25 May 2010
By Ruth Walker
SIX years after an innocent game in the Scottish countryside resulted in excruciating headaches, unbearable fatigue, gynaecological problems, tremors and even a fear that she might be dying, Janey Cringean is almost – ironically – out of the woods.
But along the way she has faced ignorance and disbelief from doctors and a Herculean battle to get the treatment that could cure her.
Cringean, a 48-year-old computer software consultant from Livingston, had Lyme disease, caused by a tiny tick bit she received while playing hide and seek with her niece and nephew in Beecraigs Park, West Lothian, in 2004. "A week later I got a spot on my hip and two days after that I woke up with the most awful vomiting that went on all day. It was endless. It felt like flu. I was really weak and shivering all the time."
Within a few days she was feeling better, but the rash – the size of a small coin – didn't budge. Her GP prescribed steroid creams and, when those didn't work, it was frozen off by a dermatologist. However, it kept reappearing, with accompanying pain. "I developed a multitude of symptoms, including unbelievable headaches, and bad pelvic pain. A year later I was almost incapable of getting out of bed. There were quite a few times I'd be lying thinking, I wonder if this could be the night I die.
"This is Tick Awareness Week (24-30 May), the start of the time of year we are most likely to be bitten. And although the figures are relatively low, we shouldn't dismiss the disease as irrelevant. Indeed, the rates of Lyme are significantly higher in Scotland than the rest of the UK, with positive test rates soaring from 86 in 2004 to 285 in 2008, the most recent available figures, though the number of actual cases could be much higher.
"It is a difficult disease to diagnose," says Stella Huyshe-Shires, chairman of Lyme Disease Action.
"It can look like a lot of rheumatic and neurological conditions and the blood test is not infallible. It's also a disease very few doctors have been aware of so if they see typical symptoms they don't recognise it.
"Caused by the bite of an infected tick – a brown/black eight-legged insect that can be no more than a tiny dot - it can be caught by anyone spending time outdoors, especially in long grass or woodland areas, from foresters and farmers to golfers, gardeners, walkers and orienteers. "I caught it in my garden," says Huyshe-Shires.
"The tick attaches to you and, as it does, it injects an anaesthetic so you don't feel the bite. You tend not to notice it for about 24 hours then the anaesthetic starts to wear off and you get a little itch.
"It's a tiny little thing – it can be as small as a full stop on a page. You can take it off but must not cover it with oil, burn it with a cigarette or do anything to put it under stress or it might regurgitate its stomach contents into you, which is the last thing you need! Pull it out with a fine pair of tweezers or a tick removal tool, which you can get from any vet.
"At this stage, there's no point in panicking because you may not be infected, but if you start seeing symptoms – anything from headaches, stiff neck and muscle pain to sensitivity to sound and light – you should go straight to your doctor.
"You can get cold or hot and have sweats or a kind of facial palsy," adds Huyshe-Shires. "You may get a rash, not necessarily at the site of the bite."
The disease can be treated by antibiotics, but diagnosis often takes time. "In a lot of cases people have gone to their GP and they've said it can't be Lyme disease because we don't have it in this country," says Huyshe-Shires. "I was three years before I was diagnosed."
After repeated requests, Cringean was finally tested for Lyme, and though the results were negative, she was prescribed massive doses of antibiotics – twice the level for anthrax poisoning. Five weeks later, she started seeing an improvement. But the irony is that such a high dose of antibiotics could cause organ failure. "It's terrifying," she says. "I don't know what the future holds.""I've been on antibiotics for more than three years. On the two attempts I made to come off I had such a severe return of symptoms it felt like falling off a cliff. So I'm terrified of coming off them, yet terrified of keeping on them. ."
As always, prevention is better than cure. Spray your trousers with a Deet-type product, says Huyshe-Shires. "And tuck your trousers into your socks, then keep away from long grass. Then be aware and check yourself afterwards. Brush off your clothes outside before you come indoors. Look for ticks in places like the groin and behind knees. They'll go for a slightly protected place – they tend to crawl up – and with children, they can get up to the hairline."
To find out more about the disease see www.lymediseaseaction.org.uk, and for information on dealing with ticks, see www.stopthetick.co.uk• This article was first published in Scotland on Sunday on 23 May