Out & About Summer 2018

Don’t get

ticked off Lyme disease is generally thought to be a tick-borne disease which, if left undiagnosed, can have long-term health consequences. ANGELA KNIGHT talked to a family from Windsor, and Beenham resident Lucinda Edwards, about the impact Lyme has had on their lives

F ive years ago, Luke Gilbert was a happy, healthy nine-year-old, excited to be invited to a sleepover party in Windsor Great Park. But what was a fun time turned out to be “a life-changing day for our family”, says his mother Samantha. Luke came home with a tick attached to his arm, which they tried to pick off – the family had no idea that there was a risk in the UK of ticks transmitting

developed headaches, nausea and fatigue and was having difficulty remembering things – an MRI showed that he had some permanent and degenerative damage to his spine. That same year, 2014, Luke was unable to attend school – he was mostly bedridden with pain and fatigue. He begged his parents to buy him a wheelchair, making

The Government should investigate Lyme disease as 3,000 new cases a year is probably only the tip of the iceberg. There should be UK Guidance – too many doctors and consultants are still unaware of Lyme disease.

do with their elderly neighbour’s walking stick to get around the house on a bad day. He developed frightening symptoms, which the family have now discovered are linked to Lyme neuro-borreliosis, when the bacteria cross into the central nervous system. Luke was unable to read, would forget how to write or speak, became light and sound sensitive, mostly lost his short-term memory and was exhibiting alarming behaviour changes. The paediatrician suspected chronic fatigue syndrome and his mother, in desperation, searched the internet, clicking on a link “Is it ME or is it Lyme?”. There was a photograph identical to Luke’s ‘bulls-eye’ rash. Samantha says: “It was only when I stumbled across the picture of the bulls-eye that everything fell into place. Meanwhile, Luke was at his worst and it was at this point that I thought we were going to lose him. Luke was saying he didn’t want to go on.” There is a two-tier system in testing for Lyme. The first is an Elisa test, which measures antibodies against the organism – if this is negative the patient is told they don’t have Lyme disease. If the Elisa test is positive then a second test will be

Lyme disease (borreliosis), a debilitating bacterial infection. Luke soon developed a huge ‘bull’s eye rash’ on his arm and he began to have chronic abdominal pains, headaches, nausea, fatigue and joint pains. Samantha knew there was something seriously wrong with him. Four months later he was referred to a paediatrician. He underwent numerous tests, but no diagnosis. The following year, his arm was x-rayed and a tumour was discovered where he had been bitten. He had an operation to remove the tumour and was diagnosed with a rare cancer-like condition. Six months of MRIs and full skeletal surveys followed to ensure there were no more tumours, but he still continued to deteriorate and nobody could explain why. In August 2014, the family took a short break to the Highlands, thinking the mountain air and scenery might be therapeutic for Luke. His older brother, 12-year-old Harry, played in the long bracken. When they returned, Harry had a lingering bite at the base of his back and became ill about six weeks later. The pain spread from his back to the soles of his feet and legs – on some days he was unable to walk. He

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