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Miranda Hart, Lyme disease and the doctors that don’t think it exists

In a candid interview this week, Miranda Hart described a particular type of loneliness. She has missed her life, she said, on BBC Radio 4; she’s been bed-bound and housebound with a “fatigue-based chronic illness that takes a long time to be diagnosed”. Her ordeal and subsequent vulnerability – a bedfellow of long-term sickness – left her “waiting in darkness” and with the realisation that she “didn’t want to be alone”.

After many years away, Hart has been welcomed back to the spotlight to promote the publication of her latest memoir, I Haven’t Been Entirely Honest with You. Things appear to have changed: the gangly, perennially single Miranda that 10 million lovingly watched on the BBC for five years is now married, and her signature silliness has gained a touch more sincerity. In her book, Hart is laying bare the reality of her absence, spent in the grips of a turbulent illness which often rendered her quite helpless.

She was suffering from Lyme disease, a tick-borne, bacterial infection that causes chronic fatigue, headaches, swollen joints and fever, among others. The disease, which usually (but not always) first presents as a “bullseye” rash – circle or oval-shaped markings around a tick bite – in the few weeks after being bitten, before flu-like symptoms appear.

A course of strong antibiotics prescribed in the early stages usually works. But some patients say their symptoms persist long after, often for years and years. It’s debilitating, says Hart.

It’s also controversial.

For decades even the very existence of Lyme disease has been debated, with naysayers arguing that it’s a US-born phenomenon that’s become a catch-all sticking-plaster term, used inaccurately over sprawling, vague symptoms.

Some doctors believe that patients with chronic fatigue syndrome are being misdiagnosed with Lyme, others are more direct – they say that Lyme disease is simply a lucrative racket led by private American quacks. Patients, long-term sufferers like Hart, of course, disagree.

“All anyone wants is to be heard, accepted, loved and seen… and when you’re not – particularly in a medical situation – it’s the worst,” Hart told Radio 4’s Today programme. For a long time, she says, her condition was mistaken for agoraphobia (an anxiety disorder in which a person deems their environment unsafe), and then diagnosed “under the banner of myalgic encephalomyelitis (ME)”.

She explained that she was bitten by a tick as a teenager, aged 14 or 15, which is when her symptoms started. ​​Ongoing symptoms can vary, but “flare-ups” are largely thought to be affected by triggers like emotional stress, of which Hart has had her fair share.

Back in 2017, she wrote ardently about losing her best friend, Bella (real name Joanna Duggen), to breast cancer and secondary liver cancer. “Her death blindsided me,” she said at the time, describing the grief that ensued as “heavy and unrelenting”.

Over the years she’s also divulged her issues with depression and “acute anxiety”, wherein she’s found herself “wading through treacle”. “On bad days getting to the end of the street to post a letter was hard, such was the extreme level of fear in my body,” she wrote in Miranda’s Daily Dose of Such Fun, her last book.

Her diagnosis, 33 years after she was first bitten – the culmination of “Zoom calls with two experts who confirmed, after a delightful smorgasbord of blood tests, that I had been living with reactivated Lyme disease”, she writes in her memoir – was a “relief”. “I mean, being misunderstood and misjudged is one of the hardest things about these kinds of conditions. For sure.”

At the time of infection, two blood tests are usually able to detect Lyme disease by identifying the antibodies fighting it off. However, the NHS warns that these tests can be unreliable in the early stages. National Institute for Health and Care Excellence (NICE) guidelines say that anyone presenting with the rash can be treated with up to two rounds of antibiotics, but there’s currently no medical guidance for treating the long-term “chronic” side of the illness.

Usually it’s treated similarly to ME or chronic fatigue syndrome, fibromyalgia – with “energy management”, lifestyle changes and cognitive behavioural therapy.

According to some studies, an estimated 14.5 per cent of the world’s population have had Lyme disease and researchers believe that it has become more common due to a warming climate which has enabled ticks to spread to new regions, increasing the opportunity for them to pass on pathogens.

In more recent years, it’s also gained celebrity status as the likes of Bella Hadid, Justin Bieber, Shania Twain and Avril Lavigne speak out about their experiences; as a result, huge online communities have become prolific on social media.

According to a BMC study, patients with Lyme disease are more likely to be white, female and living in affluent areas. The research found that “nearly two-thirds of patients were women or girls and, for patients whose ethnicity was recorded, 96 per cent were white”.

Yet, many health authorities do not recognise chronic Lyme disease as a condition in its own right. One paper found that around 5 per cent of patients experience long-lasting fatigue, pain and muscle aches after a course of antibiotics, known as “post-treatment Lyme disease” (PTLD) – a term that is rejected by large parts of the Lyme community for its connotations that the illness has passed. Rather, they argue, a person can have recurrent, consistent re-infection.

This is where the controversial part comes into play. Increasingly, the standard treatment for Lyme disease in the US is long-term use of antibiotics, with some people taking the drugs for years on end.

Xural.com

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