Last month a young woman sat in front of me in my consulting room and told me she was convinced she had Lyme Disease after reading about all the possible symptoms.
She wasn’t the first patient I’ve seen to say this and I’m sure she won’t be the last. Why? Because as diseases go, this one has rather a high profile.
Last summer, Justin Timberlake told his fans that he’d been diagnosed with Lyme Disease. He revealed that he’d been performing with a great deal of nerve pain, had felt worn out and unwell and had a diagnosis for what was troubling him.
He’s just one of a long line of famous faces, including model Bella Hadid, singer Shania Twain and comic Miranda Hart, who’ve all spoken about the same illness.
It seems hardly a week goes by without another article, another celebrity, another warning.
Of course, that’s going to trickle down to the rest of us, including the patients that come through my door.
What the coverage almost never makes clear is that, a good deal of the time, the illness being discussed isn’t ‘Lyme Disease’ at all. It’s something called ‘Chronic Lyme Disease’. And the two are not the same thing.
Last year, Justin Timberlake said he was diagnosed with Lyme Disease and suffered from pain on stage. Other celebrities, including Bella Hadid and Shania Twain, have also had the illness
To be clear, there is an infection, spread by the bite of a tick and caused by a bacterium called Borrelia. That is Lyme Disease. The first sign is often a spreading rash, sometimes in the shape of a bullseye, though fewer than half of patients ever develop one.
Flu-like aches and tiredness can follow. Left untreated, it can do serious damage: a drooping of the face, inflammation of the heart and painful swollen joints that surface months or even years later.
So this isn’t an illness to shrug off and I’ve nothing but sympathy for anyone who has been dismissed by a doctor who never thought to ask about a tick bite.
Caught early, though, it’s treated much like any other bacterial infection, with a short course of antibiotics, usually doxycycline. For the vast majority of people that clears it, and that’s the end of the matter.
Recorded cases are creeping up. In England last year there were about 1,170 confirmed, against 959 the year before.
Warmer, longer summers certainly give ticks more time to feed, yet much of the increase can be attributed to the fact we’re all more alert to Lyme now, more likely to spot the signs and get tested. None of that adds up to an epidemic.
However, the word ‘Lyme’ has become stretched to cover something quite different and this is what’s muddying the waters.
Chronic Lyme Disease is the claim that a whole raft of vague, persistent symptoms: headaches, exhaustion, aching muscles, the fog that settles over your thinking, are all the work of a hidden Borrelia infection.
The trouble is that there’s often no clear history of an infection in the first place. The standard tests come back negative.
Rather than accept that, sufferers frequently become convinced the tests themselves must be wrong. Some go as far as sending blood samples to private laboratories abroad, which run their own unregulated tests, with no evidence behind them, that will then hand back a positive result.
It’s easy to see why this happens. A label, any label, is easier to carry than being told nobody knows what’s wrong with you.
Lyme Disease is an infection spread by the bite of a tick and caused by a bacterium called Borrelia. But, Dr Max Pemberton explains, this is easily treatable if caught early
And it’s nothing new. In 2007, a landmark paper in the New England Journal of Medicine looked hard at Chronic Lyme Disease and found no convincing evidence the symptoms had anything to do with Borrelia.
Study after study has since failed to turn up any evidence that symptoms are due to a lingering infection.
As for treatments, patient groups press for long courses of antibiotics, sometimes running to many months. Yet controlled trials show they work no better than a placebo, while carrying serious risks of their own.
That hasn’t stopped a handful of doctors, some aligned with campaign groups, insisting the guidelines are too timid and that patients need ever-longer treatment. Other evidence gets wheeled out too but it rarely stands up to scrutiny. A pilot study this year, for example, hailed in some reports as a breakthrough, gave psilocybin, the active ingredient in magic mushrooms, to people with lasting Lyme symptoms who reported big improvements in their condition.
Impressive, until you read the detail. Only 20 people took part in the trial, there was no comparison group and everyone knew exactly what they’d taken. That’s not proof of anything.
I want to tread carefully here, because the distress these patients feel is not in question. They are unwell, and they deserve to be taken seriously. Only that isn’t the same as signing up to a diagnosis that doesn’t hold.
If the symptoms aren’t caused by an infection, more antibiotics won’t help.
The kindest thing we can do for these patients isn’t to nod along, it’s to tell them the truth and look at the whole picture. And that, very often, means considering causes that have nothing to do with a tick.
Picture of Kate says so much
What a lovely photograph of the Princess of Wales at the summit of Snowdon.
She had taken on the National Three Peaks Challenge, climbing the highest mountains in Scotland, England and Wales in 24 hours… in the rain.
The resilient Princess of Wales, seen with a fellow climber on the summit of Mount Snowdon, serves as a reminder of how important it is to care for one’s mind after recovery
She did it in aid of the Royal Marsden, the hospital that treated her cancer, and also to raise awareness of ‘life beyond diagnosis’. That phrase really resonated with me.
Health services are generally great at the sharp end of illness: the scans, the surgery, the drugs. What comes after can be another matter. So many people who’ve come through something frightening are left with an anxiety that won’t switch off.
What Catherine seems to grasp is that recovery is about the whole person, not just the disease. Being outdoors, moving, setting yourself a hard physical target and reaching it, can do things for the mind that no prescription manages.
Good news for coffee lovers. People drinking five or more cups a day were found to be 47 per cent less likely to develop liver cancer and a third less likely to develop cirrhosis, a study of more than 355,000 adults shows. Decaf drinkers saw similar benefits. Not that I’m urging anyone to start downing five cups a day. If you want to look after your liver, go easy on alcohol, keep your weight in check and stay active. Still, that morning cup may quietly be doing you a good turn.

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