by James Cox and Emma Palmer
Lyme Disease is a bacterial infection which is spread by infected blood sucking ticks. These tiny arachnids often hang around woodland areas and love to feed on the blood of mammals, including humans.
It sounds like an alien and exotic threat, but this skin crawling condition is on the rise.
There are between 2,000 to 3,000 cases of Lyme Disease in England and Wales each year, and about 15 to 20 per cent of cases occur on holidays and trips abroad.
A tick bite will often go unnoticed and they can bury their heads under your skin and feed there for days before dropping off.
Most people, but not all, who contract Lyme Disease develop a bullseye rash and flu-like symptoms, fatigue, headaches and muscle or joint pain.
If Lyme Disease is left untreated it can lead to painful muscles, facial paralysis, and neurological symptoms.
We speak to people whose lives have been shaped by a brush with the condition.
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DOCTORS SAID IT WAS IN MY MIND, BUT CONDITION TOOK AWAY MY TEENAGE YEARS
Sarah Mills lost her childhood to a mystery illness which only recently was diagnosed as Lyme Disease.
When she was just 14 years old, she went down to two bouts of intense flu-like symptoms, despite being an ultra fit aspiring athlete and cross country runner.
Sarah, from Colchester, never fully recovered and never ran competitively again.
Initially her symptoms began as restlessness.
Sarah, now 32, explains: "It felt like there was electricity running through then and I couldn't keep still under my school desk.
"At first I though it was because I hadn't been able to train and run. But then I started getting fatigue going up stairs and my glands grew to the size of golf balls."
Doctors were quick to prescribe antibiotics and when they didn't work, they just prescribed some more.
A second opinion at an entirely different surgery suggested homeopathy. But this too was ineffective.
School doctors suggested she was suffering from Myalgic Encephalopathy (ME), but her GP batted this idea away.
Sarah says: "This was in 1999 and he told me that he didn't even believe in ME.
"I was just a naughty girl who didn't want to go to school."
Believing this to be the cause of her symptoms, Sarah and her family persevered. In 2001 an immunologist in London gave her an ME diagnosis. But her symptoms continued to develop and impinge on her young life.
She says: "I was a teenager, but couldn't go out partying with everyone else.
"I started getting pain in my muscles my cognitive functions suffered and I couldn't retain information or learn new stuff."
In 2002 she developed an extreme sensitivity to chemicals.
She says: "I found myself reacting to more and more things.
"Cleaning products, deodorants, aftershaves, perfumes. I couldn't wash myself with any of these or go near anyone who did.
"I can still tell you what detergent you've been using and what deodorant you have on, as I'm so sensitive to it.
"On one occasion my dad walked past my room after putting deodorant on and I had a full blown asthma attack."
The sensitivity began affecting her diet. As a result her meals became bland, consisting of potatoes, unseasoned chicken and rice most nights.
She began to lose weight, falling to just seven stone. Doctors told her her symptoms were all in her mind, but Sarah knew it was something physical.
By 2005, she was at breaking point, trying to find and treat the condition.
She was referred to Breakspear Hospital, in Hemel Hempstead, with an NHS grant funding a course of immunotherapy to build up her resilience to substances. It had an effect, but in 2010 the NHS cut the funding.
"I couldn't afford the treatment," Sarah says.
"I was on disability benefit and couldn't work, so my mum and I began fundraising for treatment. Meanwhile, I began to decline.
"I was going to hospital and just saying 'help me'."
That was when one doctor went back through her medical history and suggested running tests for various viruses.
Colchester General Hospital rejected the need for it because of her ME diagnosis, but Sarah was convinced they were wrong and continued to fundraise for the tests.
Her perseverance paid off. The tests showed her body was host to the Epstein-Barr Virus (EBV) and Lyme disease.
She says: "When I was younger, we used to walk and play in the countryside on the Suffolk/Essex border.
"I used to be out among the grass watching roe deer - the perfect place to contract Lyme Disease, yet doctors still refuse to accept it is a danger in this country.
"The tests in the UK are hideously inaccurate."
Her condition is treatable and curable and she is now working with doctors to manage her symptoms with medication and has been told she can expect a full recovery.
But it has been a long road of false starts and misdiagnosis from a medical system that has let her down.
Sarah says: "At this stage we don't know the long lasting damage.
"I haven't been able to grow up the way a teenager should have. That's a crime.
"I don't want to see another 14 year old going through what I have because of this kind of ignorance."
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QUICK DIAGNOSIS IS VITAL...I WAS NOT THAT LUCKY
Tony Bent of Berry Lane, Langdon Hills, has been suffering from Lyme Disease for almost eight years since being bitten by a tick in a Basildon country park in 2007. Here, in his own words, he explains how he contracted the condition and his lengthy fight for a diagnosis:
"I was out in the sunshine, wearing shorts walking my dog, and found the tick sucking on my leg later that day.
"I pulled it out, and thought nothing of it. A rash developed a week later, and my health went steadily downhill.
"I developed serious symptoms, such as heart and lung inflammation, high fever, severe fatigue and muscle pains which saw me hospitalised throughout 2011.
"Then I developed severe neurological symptoms such as noise sensitivity, brain fog, detachment, cognitive dysfunction and crippling neuropathic pain caused by brain and spinal cord inflammation by 2012. All from a little tick bit, in a local country park. Who knew, right?
"Unfortunately, the level of knowledge regarding this highly complex disease among GPs and hospital staff alike is very poor.
"Too many times I've read stories of patients being told it's all in their heads or that Lyme Disease is rare.
"Current blood tests are poor and miss over half of true cases of the illness, yet NHS staff rely on these 100 per cent to make a diagnosis.
"Patients often only find out about Lyme Disease via internet searches or press articles. Diagnosis and treatment then usually comes by private specialists, often in foreign countries, running up costs of tens of thousands of pounds.
"Spotted early, quick treatment can eradicate the disease before the later stage's more serious symptoms can develop.
"It can progress to leave the sufferer wheelchair bound and severely depressed as they fight the disease.
"The most common cause of death from Lyme Disease, sadly, is suicide as sufferers feel abandoned by their healthcare systems and face financial ruin.
"I have been on treatment since March 2012, and still have lingering neurological and physical symptoms and chronic pain.
"My advice: Educate yourselves about Lyme Disease."
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GUARD AGAINST LYME DISEASE WHEN IN THE COUNTRYSIDE
* Wear a long-sleeved shirt.
* Tuck your trousers into your socks.
* Use insect repellent.
* Check your own body for ticks.
* Check your children and pets for ticks.
* If you do find a tick on you or your child's skin, remove it by gently gripping it as close to the skin as possible, preferably using fine-toothed tweezers, and pull steadily away from the skin.
* Contrary to popular belief, never use a lit cigarette end, a matchhead or essential oils to force the tick out.
For more information, visit www.lymediseaseaction.org.
DID YOU KNOW?
* Lyme Disease is named after the towns of Lyme and Old Lyme, in Connecticut, America, where a number of cases were identified in 1975.
* In 2002, a vaccine was introduced in America, but was later withdrawn because of concerns over side effects.
* The disease affects between 2,000 and 3,000 Britons a year.
