Small bite, big problem: Lyme disease is often misdiagnosed and no one’s sure how to treat it

    Small bite, big problem: Lyme disease is often misdiagnosed and no one’s sure how to treat it

    Once bitten…

    22 October 2015

    John Caudwell’s son Rufus was ten when he had his first panic attack. At first, John assumed it was a ‘trivial attempt’ to avoid going to school. In fact, shortly after, Rufus stopped going to school completely. He developed agoraphobia and emetophobia (fear of vomiting) and, for ten years, says John, ‘probably spent more time in his bedroom than any other place’.

    It was hard to fathom. Rufus had previously been a confident boy, happy to sing in front of hundreds of people at his dad’s work events. Now, crippled by anxiety, he seemed beyond help. He went to school ‘only on odd occasions, never for a sustained period’.

    Then, in February, Rufus — now aged 20 — was diagnosed with Lyme disease, a bacterial infection transmitted by ticks. His mental illness had, all along, been the result of an infected tick bite. The diagnosis was a relief, says John, as Lyme is treatable. But then his ex-wife Kathryn got tested and found that she had the disease, too. Next up was their daughter Rebekah, then John, then their younger daughter Libby — all four tested positive. I meet John at his house in London. It’s in Mayfair, as you would expect from the billionaire founder of Phones 4U. It has chandeliers, oil paintings and a grand piano. John seems tired and his voice is ragged. His symptoms are mild, he says — he just has a ‘bit of a brain fog’, a headache and poor memory. He is relieved, at the start of the interview, to collapse on the sofa. He has spent all day talking to the media. ‘It’s not been easy,’ he says.

    But he feels he has to get the message out about Lyme. He thinks there is a hidden epidemic and wants the NHS to investigate it urgently. And he is not the only one. His Facebook page is overwhelmed by messages of support from Lyme sufferers. ‘You are giving people across America hope,’ says one. ‘Please fight for us John,’ says another. ‘Lyme disease now is like HIV was in the 1980s. We need you!’

    Experts agree that Lyme often goes undiagnosed. In Britain, there are 2,000 to 3,000 reported cases a year; the real figure is thought to be several times that, and the number of cases has been growing. The only clue to being bitten by an infected tick is a bull’s-eye rash that doesn’t always appear, followed by flu-like symptoms. If untreated, the bacteria can wreak all kinds of havoc, affecting everything from the nervous system to the brain.

    The problem is, its symptoms can be confused with a range of other illnesses. On John’s Facebook page are dozens of stories of Lyme going undiagnosed for many years, mistaken for diseases such as ME and fibromyalgia. John says he wants a test for Lyme to be ‘one of the first things doctors do in many illnesses’.

    To add to difficulties, the tick bites are not always noticeable. John says no one in his family was ever aware of any. ‘It’s very, very difficult to know how we all came to get it,’ he says. He points out that he and Kathryn separated 20 years ago, and haven’t been on holiday together since. He says he is ‘fairly certain’ there must be some other means of transmission. But experts are adamant that that cannot be the case.

    Tick bites cause rashes, but only sometimes

    Tick bites cause rashes, but only sometimes

    Stella Huyshe-Shires, of Lyme Disease Action, says research into Lyme has only really got going in the past five years and so far has just focused on ticks. No one in Britain has yet completed trials on how to diagnose or treat Lyme disease in humans. One difficulty, she says, is that infectious disease consultants tend to be more interested in conditions like malaria, HIV and tuberculosis. ‘Lyme disease has not impinged on their awareness at all,’ she says. The only proven treatment is antibiotics, which is effective when the disease is caught early, but less so at a later stage. Doctors do not understand why. Currently, there is no consensus on treatment if a month-long course of antibiotics fails.

    John says Rufus will begin his course in a few days’ time. For the last few months, he says, they have been trying to build him up — he had been suffering from stomach and breathing difficulties and was malnourished. ‘But actually he’s gone backwards, not forwards,’ John says. ‘So we are now at the point where we’ve just got to start the treatment, knowing that it’s going to be very difficult for him to cope with, but knowing that we’ve got no option.’

    Before I go, John plays a video of nine-year-old Rufus performing at an employee awards ceremony. He looks adorable as he appears on the stage in a tux, his bowtie slightly askew, and starts to belt out Maroon 5’s ballad ‘She Will Be Loved’. It is a side to him that has long since vanished, says John. ‘Hopefully, we’ll have him back. We just have to fight to get there.’