A former nurse living near Whitsome is backing calls for better testing, diagnosis and treatment of Lyme disease.
On Tuesday, May 24, Lyme disease sufferers will be protesting in Parliament Square in London about the current inadequate NHS testing for the condition, poor diagnosis by GPs and insufficient treatment.
Unfortunately, Carole Carrick will not be there with them as she’s not up to the journey because of her symptoms.
She is, however, supporting a 10,473-signature petition asking the Government to look into the impact of the disease as it is believed to be seriously under-reported and underdiagnosed in Britain.
Carole’s story is similar to that of many people.
“I was diagnosed with myalgic encephalomyelitis (ME) 17-plus years ago, and during that time I’ve had two bullseye rashes, the first across my chest which lasted a few months.
“My GP sent me to see a dermatologist, and he took one look and said ‘Lyme’.
“He took a blood test and his words were ‘I don’t expect this will come back positive because our blood tests are rubbish’. He also gave me a short course of antibiotics and he said ‘if the rash goes away after taking these, it’s definitely Lyme’. The rash went in a few days.
“I thought nothing of it for years because I have an ME diagnosis, and I knew nothing about Lyme before then, so I just got on with feeling dreadful every day.
“The rash came back on my leg a few years later and I saw another locum GP, who dismissed it as nothing.
“With recent publicity, I started thinking again, if my whole illness is really Lyme, so I started thinking of finding the money to pay for private testing.
“My GP has suggested another NHS Lyme test, stating he thought it would come back negative, but that didn’t mean I don’t have some chronic form of Lyme’. It came back negative, so of course his hands are tied.”
Lyme disease is a bacterial infection spread to humans by infected ticks found in woodland and heath areas.
They feed on the blood of birds and mammals, including humans.
Ticks that carry the bacteria responsible for Lyme disease are found throughout the UK and in other parts of Europe and North America.
In a recent debate in the House of Lords, there was a call for the Government to investigate Lyme disease, the suspicion being that the 3,000 new cases a year are probably only the tip of the iceberg.
They also want better UK guidance as too many doctors and consultants are still unaware of the disease.
Dr Chris Newton, a biomedical research scientist, has questioned the usefulness of the NHS’s current blood test for Lyme as it “employs only one or two antigens and can result in patients being misdiagnosed as negative for Lyme borreliosis”.
Lyme disease-related protests will also be taking place around the world during May in America, Scandinavia and Europe.