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Lyme disease treatment sparks Whitehall protest
10th May 2013 - People who have become ill because of Lyme Disease have held a protest outside the Department of Health in London calling for greater awareness of the disease and improvements in treatment.
Campaigners say thousands of people have been misdiagnosed and that treatment guidelines are flawed.
The Department of Health says it is working to raise awareness of the disease among doctors and nurses.
Lyme disease is a bacterial infection that begins with a bite from an infected tick.
It is called Lyme disease after the US town in Connecticut where it was first recognised.
Lyme disease can affect the skin, joints, heart and nervous system.
The Health Protection Agency says there are 2,000 to 3,000 cases of Lyme disease in England and Wales each year. Around 15%-20% of cases occur while people are abroad.
A common symptom of Lyme disease is a distinctive rash around the bite area. This rash gradually expands over a period of several days, and can reach up to 12 inches (30 cm) across. Parts of the rash may clear as it enlarges, resulting in a 'bull's-eye' appearance. The rash usually feels warm to the touch but is rarely itchy or painful.
The rash can develop after a delay of between three to 30 days, with an average of about seven days, after a person is bitten.
Other symptoms include flu-like symptoms that can include a stiff neck, chills, fever, swollen lymph nodes, headaches, fatigue, muscle aches and joint pain.
Without treatment, Lyme disease can lead to muscle pain, swollen joints and temporary paralysis of muscles in the face and other neurological symptoms.
Later symptoms can be similar to those of fibromyalgia or chronic fatigue syndrome.
Meningitis may develop in some people infected with Lyme disease.
Protests about the way Lyme disease is treated are taking place in 30 different countries. In the UK, those affected by the condition say that doctors often believe that Lyme disease is not a problem in their area, that they do not recognise the rash and are unaware of the wide variety of symptoms that can affect many parts of the body.
The campaigners say that there are no specific current UK guidelines on how to treat Lyme disease and that the US guidelines are "deeply flawed" and do not represent the available scientific evidence.
The organisers of Worldwide Lyme Protest - UK are calling for NHS tests for Lyme to be re-appraised because they say evidence suggests that the current tests are missing as many as 66% of genuine cases.
They also want doctors to be able to prescribe long-term antibiotic treatment beyond the current four week course.
Today's protest calls on the Department of Health, the Health Protection Agency and Health Protection Scotland to work with Lyme Disease Action and other patient groups in writing UK guidelines and initiating research.
A Department of Health spokesperson says in a statement: "Lyme disease can cause serious and long term complications. That's why we are working closely with Public Health England and NHS England to raise awareness amongst doctors and nurses, and are using the latest world class diagnostic tests to look for the disease in patients with symptoms.
"Public Health England has guidance available for use in GP surgeries and there is also a Lyme disease helpline that doctors can call if they spot symptoms and are unsure of what to do."