Sufferer protests for Lyme test

Ellie Britton who is campaigning for a better test for Lyme disease.

Ellie Britton who is campaigning for a better test for Lyme disease. - Credit: Archant

A student from Backwell is campaigning for an adequate NHS test to diagnose Lyme disease after suffering from symptoms for more than 10 years.

Ellie Britton, aged 21, began suffering from the disease at the age of 10, but was initially misdiagnosed with ME.

She missed four years of secondary school as she was too ill to attend and she is often confined to a wheelchair.

Ellie joining with thousands of fellow sufferers and campaigners in Parliament Square in London on Tuesday to protest about inadequate NHS tests for the disease and the poor diagnosis rate.

She said: “I remember having several tick bites as a child, but never noticed a bulls’-eye rash.

“When I was 10, I became too ill to go to school, and was misdiagnosed with ME/CFS. We never linked the illness and the tick bites.

“I’ve missed out on most of my teenage life.

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“My worst symptoms are severe fatigue – I often need a wheelchair when leaving the house – constant nausea, stomach ache, headache, brain fog, sore throat, bone, joint and muscle pain, tremor, sensitivity to smell, light and noise.

“My NHS Lyme test was negative but a private test in the UK showed I had tick-borne encephalitis and three months of antibiotics were recommended.

“I subsequently had a number of tests in Europe and tested positive for Lyme disease.

“I am now travelling abroad for treatment every three months, which is expensive and difficult with my declining health.”

Ellie, who is currently unable to work, is joining the protest to call for an adequate NHS test for the disease, more awareness in health professionals and better treatment.

Official figures suggest there are around 1,000 cases of Lyme disease a year in the UK but sufferers believe the country is in the middle of an unrecognised epidemic with between 15,000 and 30,000 cases.

Lyme disease is a tick-borne infection which can cause devastating symptoms if left untreated including muscle and joint pains, heart problems, paralysis, dementia, seizures, blindness, meningitis and occasionally death.

For the past 25 years the NHS has been using diagnostic tests for the disease which are known to be inaccurate and unreliable which has resulted in thousands of patients being misdiagnosed or left untreated.

To sign the petition and support Ellie’s campaign visit https://petition.parliament.uk/petitions/113475