Out & About Summer 2018

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Tick list NOT all ticks carry Lyme disease The risk is highest from March to October Ticks live in grass, bushes, shrubs and low-growing foliage The tick injects a chemical that numbs the bite area before sucking blood, so it is easy to miss Outdoors – even in the summer – cover legs and arms and do a thorough tick check when you come indoors Check children’s hair for ticks too Regularly check your pets Ticks can be as tiny as a full stop – so are difficult to detect when they first attach What to do if you get bitten by a tick Don’t touch the tick with your fingers, use a tick remover – available from vets and chemists Tell your GP straightaway if you have been bitten If you have any symptoms, it is better to start treatment sooner rather than later stopthetick.co.uk

done, called a Western Blot, to confirm the presence of specific antibodies. However, antibodies depend on the response of the immune system to the invading Borrelia pathogen and this can vary considerably from individual to individual; additionally, this pathogen weakens the immune system, so antibody production is considerably reduced. Luke’s NHS Elisa test came back negative for Lyme disease. The family were also told at that time that “if it was Lyme, it wouldn’t be worth treating at this late stage”, advice which couldn’t be more wrong, as the sooner Lyme is treated the better – the longer it is left the harder it is to treat. The Gilberts couldn’t find a tick-borne specialist within the NHS. In December 2014, 19 months after being bitten by a tick, Luke was so ill they turned to a private hospital – the Breakspear in Hertfordshire – for testing and treatment. Luke’s blood was sent to the US and Germany and his results came back positive for Lyme disease. In March 2015, Harry had a blood test that showed he too had Lyme disease. It is really bad luck to have two sons suffering from the disease, one caught in Berkshire, the other in Scotland, but it shows how widespread it is and how careful people have to be when outdoors. By the age of 12, Luke had made substantial improvement and managed to return to school part-time. But he still spent time lying in pain, or dealing with symptoms like fatigue or cognitive and processing issues. The pain was both intense and migratory – at times

the UK, Samantha did some fundraising so she could take her sons to the US for specialist treatment. They were able to see a specialist in tick-borne diseases in 2016 and have been four times since then. The family says they have had the support of everyone involved within the NHS, but as there isn’t a Lyme specialist in the country, Luke has had to see a number of different specialists. “It’s been a horrific few years. I had to give up my job to care for the boys and with our finances stretched, our house had to be remortgaged – with another trip to the States needed, I am again thinking of fundraising for more treatment. We’re determined to stop the possibility of any longer-term damage being done and to give our children every opportunity to regain their health.” In the UK, Lyme is not a notifiable disease so there are no accurate statistics as to how many people are affected. In a debate held in the House of Lords, Lord Greaves said: “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.” Eleven UK Lyme campaign groups recently formed an All Party Political Lyme Group, chaired by MP Michele Donelan, who had the disease. Samantha

recently presented to the APPG on behalf of one of the Lyme groups. Michele Donelan has called for a Government inquiry into Lyme disease in the UK. Luke and Harry’s fundraising: www.gofundme.com/2r94aek lymediseaseuk.com (an online patient support group) www.lymediseaseaction.org.uk

he wanted to be taken to A&E, because he said it felt like he’d broken a bone. The fatigue was not a normal tiredness, but flu-like – he struggled to stand up or walk around. Because there are more Lyme specialists abroad than in

begin a major fight to get better from this truly devastating and debilitating Lyme illness.” Lucinda’s progress has been a long haul: “At times I feel like the climb is too steep and has gone on for too long. I cannot tolerate antibiotics and even the strong Lyme herbal remedies make me ill. I am working with a specialist Lyme naturopath in Basingstoke, but it is often one step forwards two steps back. “I am a long way from what I would describe as a decent quality of life with reasonably good health. I really feel I am still at base camp with Mount Everest to climb.”

For 25 years, former model, Lucinda Edwards, from Beenham, struggled with what she was told was ME (Myalgic encephalomyelitis). She suffered from overwhelming fatigue, burning muscle pain, memory and sleep problems, headaches, heart palpitations and many other symptoms. She and her family spent thousands of pounds trying to get her well. She had visited US clinics five times, including the renowned Mayo Hospital in Minnesota, for treatment, and no doctor diagnosed Lyme disease. Three years ago, she sent her blood to a specialist German lab where Lyme disease was diagnosed. She does not know how she

caught it and never saw a tick bulls-eye rash. When she found out that what she had was Lyme disease and not ME, she says:

“I was angry – very, very angry! I felt really let down that so many doctors, hospitals and clinics had misdiagnosed me and had dismissed my illness as psychological. I had to

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