Deadly Lyme disease on increase as more of us spend time outdoors
Why a tick bite could ruin your summer if you develop Lyme Disease
Asian tick Photo: EPA/PATRICK PLEUL
Michael Palin calls it “one of the most unpleasant illnesses to which travellers can be exposed”, a rather stoical description for a disease that can cause blindness, deafness, facial palsy and excruciating pain – and can be caught at this time of year in your own back garden.
Cases of Lyme disease have tripled in the past 10 years as more and more people take up outdoor pursuits. It comes from the bite of an infected tick and can attack the central nervous system in unpredictable ways. Although no bigger than a poppy seed, the insect inflicts a disproportionate amount of damage when it decides to leave its animal host – typically a deer – in search of human blood. A cunning operator, it abseils down from long grass and hooks on to unprotected skin, anaesthetising as it bites so that its victim has no warning sting, no reason to seek critical early treatment.
The symptoms that develop over the next few days and weeks are so complex and so easily confused with those of other conditions that they are frequently misdiagnosed. Although antibiotics are commonly prescribed when a blood test has proved positive for Lyme, according to specialists there is no good evidence about which type of antibiotic is most effective.
Stella Huyshe-Shires, 60, waited three increasingly desperate years for confirmation that she had Lyme disease. In that time, she suffered intense pain, fatigue, loss of hearing, stiffness in her joints, panic attacks and a general inability to function normally. Eventually, she had to take early retirement on grounds of ill health.
She was bitten, unawares, while working in her garden at Sidbury, east Devon, in 1999, and developed an irregular circular rash on her thigh. “It didn’t hurt and it didn’t sting, but it went on expanding,” she says. “When it started to encroach on my groin, I went to the doctor. He gave me some steroid cream. The rash faded, and I thought no more of it.”
Then she started to have other symptoms. She became hypersensitive to other people’s voices and lost 20 per cent of her hearing. Two months on, she had pains behind the knee, under her feet, between her shoulder blades and, most severely, down her spine. She woke with palpitations in the middle of the night. For the next three years, this bizarre set of symptoms alternated, receded, returned.
Her husband, Stephen, came across Lyme while researching a rheumatological condition, and his suspicions were aroused. “Do you remember that rash you had?” he asked her. It was the characteristic “bull’s-eye” rash of Lyme.
A blood test proved positive. Huyshe-Shires was put on low-dose antibiotics for two weeks – standard treatment for Lyme. “It made absolutely no difference,” she says. “New symptoms, such as numb hands and a sensation of walking on glass, were happening all the time, as well as the old stuff. It was frightening. I asked to be referred to a neurologist in Exeter.”
After another “very positive” blood test, she went to hospital for two weeks of intravenous antibiotics. “I thought I was going to get better. I got worse. From then on, it’s been a fight to get anyone to pay any attention.”
But Huyshe-Shires is not your average crushed and disappointed patient. She has a useful degree in agricultural botany and worked as a plant pathologist before joining the IT department of the NHS in Exeter. She joined the charity Lyme Disease Action in 2007 and is now its chair, lobbying MPs to change the rules governing the use of antibiotics.
Doctors in Britain follow the advice of the Health Protection Agency, which adheres to guidelines set by the Infectious Diseases Society of America. The guidelines state that patients should not take antibiotics for longer than 28 days.
“Scientists have found that Lyme can survive a short course of antibiotics,” she says, citing a recent paper form the London School of Hygiene and Tropical Medicine, as well as other sources. “That is why we are urging the Department of Health to establish clinical trials into the effect of long-term antibiotic treatment for the condition.”
The charity also takes issue with the department’s claim that blood tests are 99 per cent sensitive to Lyme (some people with Lyme do not produce enough of the right sort of antibodies to achieve a positive blood test) and its assertion that “there is no biological evidence of symptomatic chronic Lyme disease among those who have received the recommended treatment”.
The overriding problem, she says, is doctors’ lack of awareness and knowledge of tick-borne diseases. “Many people with typical symptoms will not be tested for the disease. They remain undiagnosed or misdiagnosed.”
A fellow Lyme-sufferer, Sue Ockwell, a director of Travel PR, says: “It is terrifying how little recognised Lyme is. The worst is that you cannot get anyone to take you seriously. You are made to feel a loony, on top of feeling desperately ill. Lyme is so complicated that you end up almost being your own physician.”
Ockwell was struck down with arthritis-like symptoms in 2007 but not diagnosed with Lyme until a year later. In her case, Lyme led to the autoimmune muscle disease dermatomyositis, which in turn may have triggered Hodgkin’s lymphoma, for which she has just finished treatment.
“With Lyme,” she says, “you learn to expect anything. It manifests itself in many strange ways. No one knows whether Lyme has gone or whether it has been kicked into a corner by all the other drugs I have had.”
Huyshe-Shires is still in its grip, awaiting a decision about the next stage of treatment: probably more and different antibiotics but with a maximum course of 28 days, she believes the treatment will not be long enough.
“The most extreme of my symptoms now is back pain, which can make me cry out in the night. The pain goes down the back of my legs, making it uncomfortable to sit, and I cannot drive for long because my hands hurt. The itching across my waist is sometimes so intense that it’s like standing in a nest of ants and being bitten.”
She believes that she and others can recover with the right treatment, but are disadvantaged by a lack of research into appropriate diagnosis and treatment. As the Netherlands Journal of Medicine reported recently: “The randomised studies that have been performed have been of questionable quality and were heavily underpowered to detect potential effects.” The report went on to underline the unreliability of blood tests alone to diagnose Lyme, its exasperated authors asking: “Why do doctors do their best to argue that patients consulting us about Lyme disease are over-demanding and should not be taken seriously?”
As Huyshe-Shires points out: “Doctors are hampered both by the Department of Health and by lack of evidence about what course of treatment is most effective. We do not know enough about the microbiology of this bacteria. It is not enough to say that because you have had ‘adequate treatment’, you can’t have Lyme any more.”
For more details, visit www.lymediseaseaction.org.uk
Her husband, Stephen, came across Lyme while researching a rheumatological condition, and his suspicions were aroused. “Do you remember that rash you had?” he asked her. It was the characteristic “bull’s-eye” rash of Lyme.
A blood test proved positive. Huyshe-Shires was put on low-dose antibiotics for two weeks – standard treatment for Lyme. “It made absolutely no difference,” she says. “New symptoms, such as numb hands and a sensation of walking on glass, were happening all the time, as well as the old stuff. It was frightening. I asked to be referred to a neurologist in Exeter.”
After another “very positive” blood test, she went to hospital for two weeks of intravenous antibiotics. “I thought I was going to get better. I got worse. From then on, it’s been a fight to get anyone to pay any attention.”
But Huyshe-Shires is not your average crushed and disappointed patient. She has a useful degree in agricultural botany and worked as a plant pathologist before joining the IT department of the NHS in Exeter. She joined the charity Lyme Disease Action in 2007 and is now its chair, lobbying MPs to change the rules governing the use of antibiotics.
Doctors in Britain follow the advice of the Health Protection Agency, which adheres to guidelines set by the Infectious Diseases Society of America. The guidelines state that patients should not take antibiotics for longer than 28 days.
“Scientists have found that Lyme can survive a short course of antibiotics,” she says, citing a recent paper form the London School of Hygiene and Tropical Medicine, as well as other sources. “That is why we are urging the Department of Health to establish clinical trials into the effect of long-term antibiotic treatment for the condition.”
The charity also takes issue with the department’s claim that blood tests are 99 per cent sensitive to Lyme (some people with Lyme do not produce enough of the right sort of antibodies to achieve a positive blood test) and its assertion that “there is no biological evidence of symptomatic chronic Lyme disease among those who have received the recommended treatment”.
The overriding problem, she says, is doctors’ lack of awareness and knowledge of tick-borne diseases. “Many people with typical symptoms will not be tested for the disease. They remain undiagnosed or misdiagnosed.”
A fellow Lyme-sufferer, Sue Ockwell, a director of Travel PR, says: “It is terrifying how little recognised Lyme is. The worst is that you cannot get anyone to take you seriously. You are made to feel a loony, on top of feeling desperately ill. Lyme is so complicated that you end up almost being your own physician.”
Ockwell was struck down with arthritis-like symptoms in 2007 but not diagnosed with Lyme until a year later. In her case, Lyme led to the autoimmune muscle disease dermatomyositis, which in turn may have triggered Hodgkin’s lymphoma, for which she has just finished treatment.
“With Lyme,” she says, “you learn to expect anything. It manifests itself in many strange ways. No one knows whether Lyme has gone or whether it has been kicked into a corner by all the other drugs I have had.”
Huyshe-Shires is still in its grip, awaiting a decision about the next stage of treatment: probably more and different antibiotics but with a maximum course of 28 days, she believes the treatment will not be long enough.
“The most extreme of my symptoms now is back pain, which can make me cry out in the night. The pain goes down the back of my legs, making it uncomfortable to sit, and I cannot drive for long because my hands hurt. The itching across my waist is sometimes so intense that it’s like standing in a nest of ants and being bitten.”
She believes that she and others can recover with the right treatment, but are disadvantaged by a lack of research into appropriate diagnosis and treatment. As the Netherlands Journal of Medicine reported recently: “The randomised studies that have been performed have been of questionable quality and were heavily underpowered to detect potential effects.” The report went on to underline the unreliability of blood tests alone to diagnose Lyme, its exasperated authors asking: “Why do doctors do their best to argue that patients consulting us about Lyme disease are over-demanding and should not be taken seriously?”
As Huyshe-Shires points out: “Doctors are hampered both by the Department of Health and by lack of evidence about what course of treatment is most effective. We do not know enough about the microbiology of this bacteria. It is not enough to say that because you have had ‘adequate treatment’, you can’t have Lyme any more.”
For more details, visit www.lymediseaseaction.org.uk
