'Lyme Wars': The controversy of Lyme disease - ITV 15-11-2017

2017-11-16 30

Juliet Bremner is in the state of New York where a controversial battle is taking place over the diagnosis and treatment of lyme disease, one of the fastest-growing diseases in the world.

When I met Julia Bruzzese at the family home in Brooklyn, New York, she was obviously an articulate, engaging young woman. Still only 14, Julia is forced to spend all her waking hours in a wheelchair, after she succumbed to a crippling illness three years ago.

She was a healthy 11-year-old who enjoyed dancing and achieved good grades when she first started to feel listless and weak. Then one day she felt her legs go numb and her vision became blurred.

It was the beginning of a dramatic decline and endless visits to hospitals as her father, Enrico, searched for a diagnosis and treatment. He is convinced Julia is suffering from a condition known as chronic Lyme disease.

Lyme disease is common - a bacteria passed to humans by ticks. If treated promptly with antibiotics it should cause no lasting harm. But the problems, questions and arguments begin if the bacteria is not detected or if it does not respond to an initial course of antibiotics.

The US Centres for Disease Control and Prevention estimate that Lyme disease affects around 300,000 people a year in the United States and yet there is still no precise way of testing for it. Julia says she was bitten and got the classic bullseye rash, but a doctor insisted she didn't need antibiotics because she had tested negative to the blood test.

The family did eventually find a doctor willing to treat Julia. Richard Horowitz is adamant that there is scientific proof that persistent or chronic Lyme exists and prescribes a huge array of drugs and vitamin supplements to treat Julia’s multiple symptoms. She says she is slowly getting better.

But on the other side of the so-called “Lyme Wars” are doctors who say that if there is no bullseye rash and the blood test is negative, the patient cannot have Lyme disease and therefore can't go on to have chronic Lyme. The guidelines issued by the Infectious Diseases Society of America say a three-week course of antibiotics will wipe it out and insurance companies refuse to fund more medication.

As I searched for conclusive evidence, I found myself unable to come down firmly one side or another. I could see that Julia was genuinely sick, she couldn't stand up and had to be carried up and down stairs.

But was this the result of a tick bite that had been left untreated? Or was it a series of unrelated illnesses that had been erroneously bundled together and labelled "chronic Lyme"?

At the Southampton Hospital on Long Island where they run the tick-borne disease centre, I went to speak to nurse Rebecca Young. She runs the helpline at the hospital which has seen a surge in people concerned about Lyme disease this year.

She is well aware of the controversy and on balance believes persistent or severe Lyme does exist. However, Rebecca thinks that sometimes pe