Lyme disease: the ‘yuppie virus’ with dangerous false diagnoses
Half a million Americans say they have it — but a slew of celebrity cases is prompting a post-Covid rethink
Bevan Hurley | The Times
August 2, 2024
Alexis Ohanian, the co-founder of Reddit and husband of the tennis star Serena Williams, was perplexed.
He was showing no symptoms of Lyme disease, and had not spent much time in the wilderness or northeastern US states where the ticks that carry it are most prevalent. And yet, after a “full battery of health scans”, his doctor had told him that he was infected.
Ohanian, 41, who lives in Florida with Williams and their two children, revealed the diagnosis to his 560,000 followers on Twitter/X last month, saying it had taken him by surprise. He was careful to ensure that his personal experience would not be taken as medical advice. “Please talk to a doctor,” he said.
The mysterious vector-borne disease, named after Old Lyme, the town in Connecticut where it was discovered in 1975, can cause fever, chills, headache, fatigue and muscle and joint aches. Even when treated with antibiotics, between 5 per cent and 10 per cent of cases can descend into what is known as post-treatment Lyme disease syndrome, spiralling into arthritis, chronic pain, heart palpitations and brain inflammation.
It has been thrust into the spotlight in recent years after a wave of celebrities like Ohanian have shared their diagnoses.
Nearly half a million people in the United States reported being infected in 2022, according to the US Centers for Disease Control and Prevention (CDC). The agency says this number is likely to be inflated, however, with patients diagnosed on clinical suspicion when they do not actually have it.
A scarcity of reliable testing and symptoms that overlap with many other illnesses meant that only about 63,000 cases were confirmed to CDC standards.
Experts warn that celebrity tell-alls and rampant “pseudoscience” surrounding Lyme is fuelling misdiagnoses. “Lyme disease has been plagued with misinformation for decades,” said Andrea Love, the executive director of the American Lyme Disease Foundation. “Unfortunately, there are instances of celebrities bringing attention to Lyme when it is unlikely they actually were infected with this bacteria.”
Wrongful diagnosis can be fatal
Love said that a network of “unqualified practitioners” with no infectious disease experience were cashing in by selling unreliable blood testing products and treatment. It risks patients taking unnecessary drugs, or worse, not getting the medical attention they do need for a different condition.
Practitioners often mistake Lyme for other treatable diseases and offer unproven treatments, such as vitamin supplements and ozone therapy, a controversial method that aims to boost oxygen levels in the body.
In some cases, patients who received treatment after being falsely diagnosed with chronic Lyme disease have died. False information was a “much bigger health concern” than Lyme disease itself, Love said.
Marc Siegel, a professor at the George Washington School of Medicine, says that while not personally familiar with Ohanian’s diagnosis, the description he gave of contracting Lyme led him to suspect it may have been a false positive test result. “My fear is that other people of means will hear about this and ask for similar testing, leading to more false positive results and therefore unnecessary treatment,” he said.
He said that testing patients for Lyme disease who did not display symptoms was not recommended practice, as it was more unlikely to uncover an undiagnosed infection. The chances of a false positive diagnosis increase with people who can afford to have regular full-body “executive physicals”, Siegel said.
Sickness sweeps celebrity world
The singers Shania Twain and Justin Bieber and the actor Ben Stiller are among those who have reported suffering serious health complications from Lyme.
In 2016 Kris Kristofferson, the musician and actor, told how he had suffered severe memory loss after contracting Lyme disease, which doctors misdiagnosed as Alzheimer’s.
Jamie-Lynn Sigler, who portrayed Meadow Soprano in The Sopranos, revealed the same year that she had been suffering debilitating chronic symptoms of Lyme disease since the height of the mob drama’s popularity.
The actress and comedian Amy Schumer said in 2020 that she decided to disclose her Lyme disease because she wanted to “advocate for self-love and acceptance of the skin you’re in”, while Riley Keough, the granddaughter of Elvis Presley, said last year that she had chosen to use a surrogate to carry her first child Tupelo, who was born in 2022, while contending with an infection.
When Yolanda Hadid, the reality TV personality and mother of the models Gigi and Bella Hadid, was diagnosed in 2012, her treatment became a central plot line in the Real Housewives of Beverly Hills. Bella Hadid has also been diagnosed with it.
Distrust goes back decades
Blood testing can only detect antibodies to the Lyme bacteria, rather than the disease itself. It can take several weeks after infection for the immune system to make enough antibodies to be screened.
Suspected Lyme cases have exploded in the US in recent years, as populations of the black-legged tick that carries the bacteria grow due to the warming climate, and housing developments venture further into their habitat. Confirmed cases averaged about 33,000 each year in the US last decade, around half the 2022 figure.
The UK Health Security Agency estimates that there are between 2,000 and 3,000 new confirmed cases in England and Wales each year, plus another 1,000 to 2,000 undiagnosed cases. Case numbers have remained relatively stable over the past decade.
Medical professionals are often sceptical when patients present with signs of Lyme disease, which is spread by black-legged ticks carrying Borrelia burgdorferi bacteria.
The distrust between the medical establishment and Lyme patients goes back decades. In 2007, the former head of research funding at the National Institutes of Health (NIH), the US primary medical research agency, described patients as “Lyme loonies” in an email to colleagues.
However, patient advocates say that a greater understanding of complex diseases post-Covid, emerging science and the sheer quantities of people contracting it has led to a watershed moment for the incurable illness.
The musicians, actors and reality television personalities who have shared their struggles with Lyme have helped to thrust the disease into the public consciousness, said Lindsay Keys, a patient advocate who directed the 2022 documentary The Quiet Epidemic.
Keys said that celebrities who spoke out about their Lyme diagnosis risked scorn for what is sometimes derisively referred to as a “yuppie virus”.
“People will accuse them of faking it for attention,” she said. “But I always think, why would someone choose an illness that inspires disbelief if they wanted attention? Just imagine that if this many celebrities, which are what, maybe 0.01 per cent of the global population, have Lyme disease, then how many everyday people have Lyme disease? I think it’s great that they’re stepping forward.”
Scientists have recently reported encouraging findings in Lyme diagnostics and treatment. The National Institutes of Health is expected to invest $43 million to study it this year, about twice as much as in 2015.
A British problem too?
Keys, who said she herself had experienced prolonged symptoms of Lyme, has met patients from the UK who experienced the same “outdated, restrictive, narrow diagnostic and treatment guidelines” as in the US.
“In some countries where there’s a nationalised healthcare system, those patients struggle even more because there’s no system for them to go outside of,” she said. “Here in the US, when people are told ‘you don’t have Lyme, you’re crazy, there’s nothing we can do for you’, they will go and find a doctor who works outside the system.”
The commercial nature of the US healthcare system makes it difficult to foster trusting patient-doctor relationships that are key to correctly diagnosing and treating Lyme, Arnold Chen, a senior researcher with Mathematica data analytics consultancy, said.
Chen conducted focus groups with Lyme patients on behalf of the American Medical Association, and found that patients often seek validation for their illness and end up feeling rejected by their doctors.
He found that patients would often seek medical care from their doctor after spending thousands of dollars on extensive testing and unproven treatments. “These patients require a substantial amount of physician time,” Chen said. “They need a trusting relationship with a physician who can work with them.”
