Simone Sheppard from Aylesbury was interviewed by BBC News on 31st March 2017. She didn’t agree with the Motor Neurone Disease diagnosis her father, Alan Sheppard, was given after he fell into a coma in 2014. He had the classic bulls eye rash and then the family dog died from Lyme disease after being bitten by ticks in the back garden. This convinced Simone Lyme disease could be behind her father’s sudden decline and sought out her own private testing. When the private tests came back positive, the NHS treated her father with two weeks of antibiotics producing significant improvements. The treatment was then withdrawn and Simone is still battling to get further treatment.
The current guidelines only allow for short courses of antibiotics to be prescribed for Lyme disease, despite an increasing number of doctors and treatment guidelines recognising that longer courses can be beneficial. Many patients frustrated by the lack of knowledge and care with the NHS, turn to private and alternative clinics in the UK and abroad.
The BBC News item highlights the difficulties in diagnosing and treating Lyme disease. Political editor Peter Henley talks about the parliamentary working cross party group that has been formed. NICE are also producing new guidelines due to be published in 2018.