“IN the fullness of time, the mainstream handling of chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine, because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease."

Those are the words of Dr Kenneth Liegner, an expert in Lyme Disease and other tick-borne diseases - following a cross-Parliamentary move to tackle the disease.

Earlier this month, MPs and members of the House of Lords met doctors, researchers, Lyme Disease advocacy groups and patients to establish an All Party Parliamentary Group tasked with bringing about changes to tackling the disease.

Natasha Metcalf, co-founder of patient support network Lyme Disease UK, called the move "critical".

"Public Health England estimates there are around 2,000 - 3,000 new cases per year, whereas Caudwell LymeCo charity and Lyme Disease UK estimates there could be as many as 45,000," she said.

"Thousands of people will be infected this year and many are likely to go untreated, which can leave people disabled or misdiagnosed with conditions such as chronic fatigue syndrome, fibromyalgia, Alzheimer's and Multiple Sclerosis. Cases are growing by 65per cent per year worldwide."

Lisa Vallo, of Bingley is involved with Lyme Disease UK's campaign - calling for frontline medical staff in the UK to be aware of the disease; for the public to be aware of tick bite risks and prevention methods and symptoms; and to support those infected in 2017.

While Lisa welcomes the All Party Parliamentary Group, she fears it may be too late for her.

"It's good news, I just wish all the changes would happen today," she says.

"After a long battle, I'm finally having treatment but I actually think I'm getting worse. Out of the last 12 days, I've been okay for two of them. It's a living nightmare."

Lisa has struggled with Lyme Disease for the past 15 years. It was caused by a tick brought in via her pet cat.

"I noticed what I thought was a bit of dirt on my tummy and tried to flick it off. It wouldn’t move, I tried to prize it out and eventually pulled it off. I could see the legs of this creature wriggling. It brought the bacteria Borrelia Burgdorferi into my body," says Lisa, 48, whose health quickly deteriorated.

"It started like flu then I developed a serious Vitamin D deficiency and anaemia. My legs felt heavy and painful, I was tired all the time and had chest pains. I was bedridden a lot of the time.”

Lisa calls the bacteria her "dictator" because it has controlled her life.

"I have felt ill for most of the time since that bite," she says. "

Lyme Disease is caused by a spirochaetal bacteria, usually from a tick bite. Symptoms include a ‘bull’s-eye’ rash, fever, sore muscles and a stiff neck. If untreated the infection can spread, causing musculoskeletal, cardiac, dermatological and neurological problems.

“There's not thought to be much risk of Lyme Disease in this country and many people get misdiagnosed," says Lisa.

"My doctor kept telling me I didn't have it. All the tests I had, the X-rays, scans and psychological assessments proved futile. I was made to feel like a hypochondriac. I walked out of the doctor's in tears, not knowing which road to take, or even if there was one."

Watching a TV report about Lyme Disease, Lisa was convinced it was what she had. She sent a blood sample to a lab in Germany, which has advanced testing and treatment of Lyme Disease, and last year she was finally diagnosed with it.

"I’d reached the end of my tether trying to convince people I had it. Eventually I went private and when I got a diagnosis I cried and cried with relief," she says.

"Then I felt angry that I'd endured all those years with an undiagnosed illness. I felt totally let down by the NHS."

Lisa has electro-magnetic treatment, has altered her diet, and takes supplements and antibiotics. She receives private treatment at a surgery in Beverley, North Yorkshire, run by a doctor who works closely with the clinic in Germany where she was diagnosed.

"As Beverley isn't exactly on my doorstep I can't always make it for treatment as I'm sometimes too ill," says Lisa.

"Treatment should be available on the NHS. I find it ridiculous that I can't be treated at my local NHS clinic for something that is potentially life-threatening.

"Testing should be more in-depth, and diagnosis quicker. Lyme Disease can be detected early on in the blood and cleared up in weeks with antibiotics, but left untreated it can lead to permanent problems. It doesn't discriminate - people of all ages are affected. I have encountered children whose lives are under threat.

"If it reaches the heart it can be fatal."