Don't get ticked off
Angela Knight talks to Beenham resident Lucinda Edwards about the impact Lyme disease has had on her life
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 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.”
Five 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 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 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 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 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 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 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.
To donate to Luke’s fundraising please click here.stopthetick.co.uk and lymediseaseuk.com (an online patient support group) and www.lymediseaseaction.org.uk
More information can be found at these websites too
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
