Truth about the rise of chronic Lyme disease as celebs reveal struggle

She is a world-famous beauty, regularly gracing the cover of Vogue magazine and appearing on the catwalks of luxury brands including Dior and Versace.

But recent photos of supermodel Bella Hadid are worlds away from her usual high-fashion image.

The pictures, posted last month on Instagram by her mother, Dutch reality star Yolanda Hadid, show Bella weeping and distressed in what looks like a hospital bed, connected to wires, tubes and various medical machinery.

‘Watching my Bella struggle in silence has cut the deepest core of hopelessness inside me,’ wrote Mrs Hadid.

‘The invisible disability of chronic neurological Lyme disease is hard to explain or understand for anyone.’

Bella, 28, was diagnosed with chronic Lyme disease, a condition linked to tick bites, in 2012. Her mother and her younger brother, Anwar, also both say they have the condition.

Bella has since suffered from an irregular heartbeat, mood swings, joint pain, nausea, breathing difficulties, insomnia, headaches, brain fog, anxiety and disordered eating.

The Hadids are not the first celebrities to talk about their struggle with Lyme disease. 

It’s a diagnosis shared by an impressive number of fellow celebrities including Justin Bieber, Justin Timberlake, Avril Lavigne, Kelly Osbourne, Amy Schumer, Ben Stiller, Shania Twain, Alec Baldwin, Debbie Gibson and Riley Keough.

Even comedian Miranda Hart, 52, has spoken about her decades-long struggle with chronic Lyme disease since the age of just 14.

But many experts say the condition may not exist at all.

In most cases, they argue, Lyme disease cannot stay active in the body for decades, despite what chronic Lyme patients claim.

In fact, research shows that patients who say they have chronic Lyme disease rarely ever test positive for the infection on blood tests.

The experts say extensive treatments offered to patients such as Bella Hadid can cost patients their life savings and put them at risk of deadly complications.

Instead, some say that patients may not have a Lyme-related disease at all.

Rather, their symptoms could be due to an undiagnosed condition, such as a severe vitamin deficiency or mental illness.

Intriguingly, some experts say there may even be patients who claim to have the condition for status reasons, given its long association with wealthy areas of the US.

‘Chronic Lyme disease is not recognised or widely accepted by the medical establishment – it’s still very controversial,’ says Professor Hany Elsheikha, chairman of interdisciplinary parasitology at the University of Nottingham.

‘It’s a condition that sits in a grey area. But because people are really desperate, misinformation spreads like wildfire.’

So what is chronic Lyme – and does it actually exist?

Named after the small town in Connecticut where it was first identified in 1975, Lyme disease is spread by deer ticks infected with a bacteria called Borrelia burgdorferi.

The disease is currently on the rise in the UK – with cases tripling in Britain between 2000 and 2011.

The NHS now estimates there are now up to 4,000 cases of Lyme disease each year in England and Wales.

At first, the disease usually causes a tell-tale bull’s eye rash, before developing into flu-like symptoms such as a headache, fever and fatigue. 

And if left untreated, the infection can also spread to the joints, heart and nervous system.

While the vast majority of patients with Lyme will recover after a course of antibiotics, lingering symptoms do occur for some – and are known as post treatment Lyme disease syndrome (PTLDS). Experts say these symptoms tend to last for weeks or months.

But chronic Lyme disease patients say their condition is due to something else – a continuing active infection with the Lyme-causing bacteria, which they say can remain within the body for decades.

As a result, they claim to need long courses of antibiotics – some more than six months – to fight off the infection, as well as a number of other invasive treatments.

Experts say a treatment increasingly popular with rich chronic Lyme patients in the US is something called plasmapheresis, which involves removing the patient’s blood from their body, ‘cleaning it’ and replacing it. 

Research shows plasmapheresis, which costs thousands of pounds per session, is not effective at treating chronic Lyme symptoms.

They say this is because there is no evidence that the condition is real to begin with. 

For starters, experts say supposed symptoms of chronic Lyme disease are far too wide-ranging to be explained by any one illness.

According to Lyme Action Network – one of many political groups in the US formed to increase awareness and raise funds for the condition – chronic Lyme can include symptoms as varied as rib soreness, change in bowel function, bladder disfunction, unexplained breast pain or milk production, testicular pain, menstrual irregularity, eye floaters, early waking, problems absorbing new information, worse hangovers from alcohol and even getting lost.

Even more confusingly, people experiencing any of these symptoms don’t even have to remember being bitten by a tick to consider Lyme disease as the cause, says the organisation.

‘You MAY have the disease even if you never saw a rash or tick,’ its website reads. ‘The ticks can be tiny, and you do not feel their bite.’

And testing for the condition is another point of contention.

Chronic Lyme disease activists say that traditional tests for the disease are unreliable because they look for antibodies for the bacteria, rather than the bacteria itself.

As a result, continues the Lyme Action Network website, ‘you MAY have the disease even if your Western Blot or ELISA blood tests return negative results’.

Expert in tick-borne diseases Dr Sally Cutler, professor in medical microbiology at the University of East London, used to run a diagnostic lab that tested for Lyme in the UK.

She says it was common for patients who believed they had chronic Lyme disease to push for further tests if the results came back negative. 

‘They would then go and shop the blood sample through other labs until someone finally gave them a positive result,’ says Prof Cutler.

‘A lot of these individuals have latched on to a Lyme diagnosis and are adamant that that’s what they’ve got. Many of them will not take no as an answer.’

So, if these patients do not have chronic Lyme, what could be wrong with them?

In 2022, researchers at Johns Hopkins University in the US analysed the medical records of more than 1,200 patients who claimed to have Lyme disease but no proof of a tick bite.

They found that 84 per cent showed no signs of a Lyme infection. Nearly two-thirds, after further inspection, were found to have other medical problems. 

A fifth had anxiety or depression, nearly a fifth had either fibromyalgia or chronic fatigue syndrome – two incurable and poorly understood chronic conditions – while others were found to have migraines, ostearthritis and sleep apnea.

Experts also argue that supposed chronic Lyme symptoms may be due to an undiagnosed deficiency of a vitamin, such as B12 or folate. Both issues can lead to fatigue. They can also be treated by taking daily supplements.

It’s important to check for deficiencies in certain vitamins that can contribute to lingering issues,’ says Prof Elsheikha.

However, some experts have another intriguing – and controversial – theory about chronic Lyme disease: that some sufferers may claim to have it because it is a status symbol.

What’s so unique about chronic Lyme, says Prof Cutler, is that it’s become a somewhat sought-after diagnosis.

‘It’s something we saw when it first became publicly known about in the 1980s, when most cases originated from around the New York area in the US,’ she says.

If you were a New Yorker and hadn’t managed to acquire Lyme disease within your first few years of living there, she argues, then you could be seen as in the wrong socio-economic group and unable to afford to live in the more affluent outskirts of the city.

To this day, Lyme disease hotspots on the US east coast include moneyed holiday destinations such as the Hamptons, Martha’s Vineyard, Cape Cod and Woodstock.

But the disease’s association with these wealthy areas began to give it an almost positive stigma, says Prof Cutler.

‘It was a respectable diagnosis that wasn’t sexually transmitted, had treatment options and wasn’t a disease of poverty and people began boasting about it,’ she says.

‘If anything, it became a disease of the rich and affluent.’

Surveys of those at the most risk of tick bites – mainly forestry workers – seem to back up the observation.

On average, a quarter of these workers, bitten by ticks all the time as an occupational hazard, tested positive for Lyme disease antibodies on blood tests.

But none had symptoms commonly attributed to Lyme disease, said Prof Cutler.

‘Almost all of them were very healthy – without any long-term issues – yet had been exposed quite significantly to tick bites through the years,’ she said.

‘It showed that not everyone who gets bitten by a tick and tests positive for the bacteria will get a clinical disease. People who get Lyme, like these forestry workers, can spontaneously recover.’

Experts say they’re particularly concerned about chronic Lyme disease patients seeking expensive treatments that lack scientific backing and have even been linked with serious complications.

‘You end up with people – particularly in the US – who have been on course after course of antibiotics, some of which they’ve had by infusion,’ said Prof Cutler.

‘They’re going into private clinics having lines put in and infusions over hours, and they end up getting other problems associated with the fact that they’re having their skin broken all the time – secondary infections, inflammation and nerve damage, just because they’ve having all this unnecessary treatment.’

Patients being treated for chronic Lyme have even died from infected catheters.

Experts say that patients who have failed to respond to antibiotics should consider other possible diagnoses.

‘It’s very unlikely that it’s treatment failure,’ says Prof Cutler. ‘It’s much more likely to be a diagnosis failure.

‘Patients have to be more sceptical over whether they have Lyme disease or not.’