LYME disease sufferers in the region are backing national calls for a major review of the treatment and diagnosis of the condition after feeling let down by the current system.

MPs are joining Lyme disease campaigners in a protest in London’s Parliament Square on Tuesday (May 24) calling for changes to what they say is inadequate NHS testing and treatment for the condition.

Typically, once a patient has been diagnosed with Lyme disease, they receive a short course of antibiotics and are told that any remaining illness is due to post-treatment symptoms and not the active disease.

However many patients continue to suffer for many years and have to travel abroad for treatment.

Earlier this month, Public Health minister Jane Ellison ordered a major review of the diagnosis, treatment and transmission of Lyme disease amid concern about a quadrupling in cases over the past decade.

Louise Alban’s 26-year-old daughter Rachel contracted Lyme disease after being bitten by a tick whilst a student in Oxford six-years-ago.

Rachel, who grew up in Darlington and now lives in Northallerton, displayed classic Lyme symptoms but a series of medical investigations failed to diagnose it.

Four years later, the family contacted a doctor in Germany – where testing for the condition is more thorough – and Rachel tested positive for the disease.

But because of the delay in her diagnosis, her health deteriorated, and Mrs Alban, of Darlington, is calling for an overhaul in the way the NHS diagnoses and treats the condition.

She said: “Because it wasn’t picked up, over the next four years she got more and more ill with a whole variety of symptoms which we now know to be Lyme disease.

“Once she was properly diagnosed by the German doctor she responded quite quickly and strongly to treatment in the first three months before it took a dip.

“By that time the disease had been within her for four years – in her brain, in her tissue, it was everywhere.”

Diane Granger, 54, also of Darlington, is another Lyme sufferer who feels let down by the current NHS system.

She contracted the disease in 2010 and was given a week’s course of antibiotics.

Since then she has developed many severe symptoms such as arthritis, insomnia and depression only to be told that her disease is not active after one blood test came back negative.

When she requested a further test she was told to go private.

She said: “Why should Lyme sufferers have to go down the private route and be made to feel like hypochondriacs?

“What could be a cheap and simple treatment at the beginning could end years of misery for people and why can’t GPs prescribe this course of antibiotics without fear?

“The testing for Lyme needs to change and it needs to change now.”

Lyme disease campaigners believe that because of misdiagnosis there could be as many as 30,000 people in the UK with the condition, many of whom do not even realise they have it.

May is Lyme Disease Awareness Month and more information about the condition is available at