Earlier this year, Claire Enders was suffering from such excruciating pain in her joints, she thought she could not go on.
“I was absolutely showing signs of mental illness. I was going to kill myself because I was in such extreme pain. I was in a grip of a downward spiral. I couldn’t live like this. I put all my affairs in order, I drew up a will, I wrote a letter of wishes.”
Despite frequent trips to the doctors and specialists, nobody knew why she was so ill and not getting any better. She had Lyme disease.
What makes her lack of diagnosis so remarkable was that not only had she suffered from the disease – which is usually curable with a short course of antibiotics – for a full decade, so too had her husband. More than that, she had caught it near Lyme itself.
There are not many diseases named after a place. Most of them conjure up pretty inhospitable spots: Ebola, Lassa fever, West Nile virus. Lyme disease, however, is named after the small, wealthy marina town in New England (itself named after the prosperous Lyme Regis in Dorset).
Here, in 1975, a strange arthritic condition affecting children was diagnosed as being caused by a tick that grew on local deer, which passed on a bacterial infection to humans through bites.
Lyme was a place Enders knew well. Her family had an estate a mere five miles away in Waterford. “My family founded the state of Connecticut. That’s how posh I am. I was the 40th member of my family to go to Yale.”
In her Alexander McQueen coat and with perfect, white teeth, she is the epitome of elegant New England aristocracy: at 57, she could easily pass for 10 years younger.
Now a British citizen, having lived and worked in London for 25 years, she would occasionally return to the family estate. She did not know it was cursed. She contracted the tick-borne disease twice, but no one made the connection between her excruciating pain and Lyme, the town, until it was almost too late.
When she was eventually diagnosed after her second bout, nearly a year after a visit to New England, her reaction was: “I thought: you are the smartest girl on the planet, you can run one of the top businesses ever created by a woman in this country, and still be a complete fathead. I said to myself, I should have known. I felt like an idiot.”
Enders founded and still runs Enders Analysis, acknowledged to be one of the top industry research firms, covering the media and telecoms sector. She is speaking to me – with a shortage of breath, and stretched out on a sofa – determined to share her horrific experiences now that Lyme disease has escalated in Britain. Ian Burgess, an entomologist, has estimated there could be as many as 35,000 annual cases in Britain, rather than the 2,000-to-3,000 cases estimated by NHS Choices, the health service website.
Also, she wants to dispel some of the myths surrounding this disease.
The most high-profile sufferer of Lyme disease in Britain is John Caudwell. The billionaire founder of Phones4U has not only had it himself, but his eldest son was stricken for a decade, and his ex-wife and daughter tested positive, too. Mr Caudwell now believes the disease “could be congenital or transmitted person to person”, and fears his relatives are not the only family suffering in the UK.
Enders, however, is typically robust that this is not possible: “Anyone who says you can get it through transmission is a nutjob.”
The great majority of the medical community agrees with her. Professor Tom Solomon, director of the University of Liverpool’s institute of infection and global health, has insisted that “although there are many things about Lyme Disease that we do not yet understand, there is no evidence at all to suggest that it passes from person to person”.
I am curious as to why Enders is so decided, considering her husband caught the disease 25 years ago. Could he not conceivably be the source?
“It’s ridiculous to say that you can get it from hugging someone. There is no way he transmitted to me. If you step onto our family estate, you will get Lyme disease without touching an Enders person. It is rife. If you go to an affected area, everyone will get it eventually. That’s probably happened to Mr Caudwell and his family.”
Public awareness of the chronic illness has increased in recent months thanks in part to a number of celebrities – which includes Singer Avril Lavigne and High School Musical star Selena Gomez – discussing its effect on their lives.
Earlier this month, model Bella Hadid’s diagnosis was revealed by her mother, Yolanda Foster, who has herself been publicly battling the disease since 2012; Bella’s 16-year-old brother Anwar also has the disease. Ally Hilfiger, the 30-year-old daughter of American designer Tommy Hilfiger, recently described how contracting it at the age of seven means she now walks with a cane, has trouble sleeping and spends hours in the bath to ease her joint pain.
As a precaution, Enders’s daughter recently tested for Lyme. “She’s 26 years old, incredibly healthy, but she felt that she has spent so much time in Connecticut that it might be sensible to find out.” She tested negative.
Enders is also keen to spread the message that the tell-tale rash – a so-called bulls eye rash – only shows on about half the sufferers. Her husband, Christopher, “got the vesuvius – this giant thing, this big.” She picks up a plastic coffee-cup lid to demonstrate. As a result, he was diagnosed within three weeks of catching the disease.
Enders, however, did not develop a rash either time she caught it. The first time was in 2003, after visiting Connecticut for July 4 celebrations. But it was only when she got back to Britain that she started to feel ill.
“I remember feeling very feverish. I kept going back to the doctors and saying I think there’s something wrong with me.”
Months passed with her going steadily downhill, and her joints becoming ever stiffer. At one stage, after a flight into Heathrow, she could not get off the plane because her legs had swollen so much. She was rushed to hospital with suspected deep vein thrombosis. When this was ruled out, she was eventually referred to a specialist reumatologist, Dr Gerard Hall.
“And, then, bingo! Dr Hall hears my American accent and asks me if I had been anywhere near New England in the last few months. And I say no, it was 13 months ago. And he says: ‘We need to test for Lyme right away.’
“He was the first person to connect my American accent and Lyme disease. He saved my life.”
After testing positive, she was immediately put on an extra-strong course of doxycycline, an antibiotic, for three months.
“Within a week, my legs were working again. Within two weeks I was walking. The disease went within a month. I felt on cloud nine. I felt completely normal.”
But lightning was to strike twice. And this time it was made more complicated by the fact that Enders now has osteoarthritis. It is unclear if this was brought on by her first bout of Lyme disease, but it was certainly exacerbated by it.
Last June, she was back in New England for her mother’s funeral. “I had no idea that the tick was active at the start of June. It was cool weather, there was no sign of heat. But that’s the worst time to catch the disease, because that’s when the ticks have their babies – nymphs – and these are almost invisible. They are not big hairy monsters at this stage.”
Experts believe that climate change has meant the tick has gone from being active for just two weeks of the summer to five months of the year. Again, she did not show any signs of a rash and, again, she did not start to feel unwell until she had returned to Britain.
“I just thought I was unwell because I had lost my mother. I was certainly exhausted and pretty weepy, so I thought I was grief-stricken.”
But as her limbs started to stiffen, she became convinced that she had Lyme disease for a second time. However, initial tests were negative.
By the spring of this year, she was only able to walk with the aid of a stick. “I was basically told [by doctors] that the feeling of being incredibly unwell, the loss of weight, the exhaustion, was all to do with my refusal to come to terms with the fact I was a cripple. They said: if I have to spend time in a wheelchair, that’s just the way life has to be.”
She refused to accept this diagnosis, and only after a battle was she able to find a specialist who sent her blood sample to Porton Down, the government science and technology laboratory, and one of the few places able to test for the US variant of Lyme.
It came back positive, and she was immediately put back on doxycycline.
“Within 48 hours of taking the pills, I was making my first steps out of the wheelchair. It was unreal. I am determined not to forget that feeling of coming out of the death spiral.”
However, her back, knee and leg joints are still in very poor shape – and her neck too, which is what makes it sometimes difficult for her to breathe.
Her doctors, she says, have been wonderful, but she claims the lack of knowledge about Lyme disease in the UK, along with the caution about prescribing antibiotics, was nearly fatal.
“The delay in diagnosis and treatment of Lyme disease caused permanent damage to my tissues, which support my walking. I am never going to be well again because I had that disease for months, months, longer than I should have. This reluctance to give antibiotics is something I am paying for.”