Ignorance of tick-borne Lyme disease 'costing lives'
When Joanne Drayson regularly walked her dogs in the woodland near her home in Guildford, Surrey, she was unaware that a tick the size of a poppy seed would infect her with a serious and debilitating disease.
"I had this strange symptom, which I can only describe as whole body rigidness. It kept recurring," she says.
Her health deteriorated to such an extent that she was unable to lift her legs or arms. The pain in her hips meant she was unable to climb stairs in her own home.
In the end, she was retired on health grounds from her job in the civil service.
Mrs Drayson now realises what happened to trigger the extreme fatigue, joint pain and stiffness that plagued her for more than four years.
In 2003, she remembers finding a tick on her foot, which caused a rash. At the same time she had flu-like symptoms that lasted several weeks.
When Mrs Drayson was bitten again two years later, she developed symptoms similar to arthritis, but doctors still did not suspect that the ticks had infected her with Lyme disease.
"I had removed ticks from my dogs for over 30 years, but didn't really know much about them.
"There are probably thousands of people who could end up like me."
It was 2007 before she was given a clinical diagnosis, after her GP prescribed antibiotics for a chest infection and they dramatically improved her symptoms.
This weekend, a group of individuals calling themselves Worldwide Lyme Protest UK is highlighting the devastating impact of Lyme and other tick-borne diseases when they are misdiagnosed.
Nicola Seal, from Aberdeen, who has co-ordinated the UK protest, says the disease is not understood by the vast majority of medical professionals, leaving thousands of patients without the appropriate treatment.
"We wanted to put our personal stories to the Department of Health to make them aware that people are dying because they are not getting diagnosed and treated properly."
She adds: "There is a lack of GP experience and knowledge - and when people are diagnosed with Lyme disease, we lack any professionals who understand it."
The protest group is also urging the government to re-examine the current NHS test for Lyme, which it says misses as many as two-thirds of genuine cases.
Official estimates put the number of new UK cases each year at around 3,000, but Lyme disease charities say the figure could be as high as 15,000 annually because so many people do not have their condition diagnosed.
Stella Huyshe-Shires, who chairs the charity Lyme Disease Action, says that patients have not been listened to in the past and this has created a problem.
"So many people are going undiagnosed because the tests are not foolproof. The test relies on detecting antibodies which may take weeks to appear in some people.
Patients going abroad
"They may may not even develop the antibodies which the test looks for."
She says it wasn't the NHS's fault that there is not a perfect test - it doesn't exist.
The result is that patients go abroad to private clinics to look for a test that will prove they have Lyme disease, spending a lot of money in the process.
At the Rare and Imported Pathogens Laboratory in Wiltshire, where tests for Lyme disease are carried out, a two-tier testing system recommended by American and European authorities is used.
Public Health England, which runs the lab, says the tests are sensitive enough to detect low levels of antibodies, occasionally producing a false positive result.
It also acknowledges that the antibody response takes several weeks to reach a detectable level, so tests in the first few weeks of infection may be negative.
Dr Tim Brooks, head of the Rare and Imported Pathogens Laboratory, says they are always looking to improve their diagnostic systems.
"The laboratory is evaluating different diagnostic tests, and will be developing a specific set of guidance for the investigation and management of Lyme disease in the UK."
Yet there are still many uncertainties surrounding Lyme disease, says Mrs Huyshe-Shires.
By bringing clinicians and patients together, the charity has published a list of "unknowns" in the diagnosis and treatment of Lyme disease, which it hopes will inform any future research and guidance.
One controversial issue concerns the treatment of borreliosis, caused by the Borrelia burgdorferi bacterium, the agent of Lyme disease.
While most doctors agree that treatment of this type of infection with oral antibiotics in its early stages is often successful, there is far less agreement regarding the treatment of chronic Lyme disease, which keeps recurring because of a delayed diagnosis.
In these cases, a more lengthy course of intravenous antibiotics may be required. There is also the possibility that patients may relapse after a lengthy remission.
BADA UK, Borreliosis and Associated Diseases Awareness UK, says a full recovery is not certain.
"The length of time a person has been infected before treatment, whether the patient has been given sufficient treatment, and whether there are co-infections present, can all have a big impact on a patient's recovery," it says.
Much more study into the nature of the Borrelia bacterium needs to be done before a safe and reliable vaccine for all the strains can be created, BADA UK says.
Helpline for doctors
The Department of Health has been working closely with Public Health England and NHS England to raise awareness among doctors and nurses. It says it is using the latest world-class diagnostic tests to look for the disease in patients with symptoms.
There is now a Lyme disease helpline that doctors can call if they spot symptoms and are unsure about what to do.
Six years on from her diagnosis, Mrs Drayson's health has changed for the better after a long course of antibiotics.
"I've recovered my health and my life. I can now cycle and run upstairs."
But she says no two people react in the same way to Lyme disease.
"We have to acknowledge that people react in a different way to different treatments. There is no definitive treatment. We have to give patients the opportunity to have ongoing treatment if they need it."