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# 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][1]
Asian tick Photo: EPA/PATRICK PLEUL
By Elizabeth Grice 7:00AM BST 16 May 2011
[Comments][2]
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."
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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 ][5]
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