Why are so many suffering dreadful Covid symptoms but still testing NEGATIVE?

Why are so many suffering dreadful Covid symptoms but still testing NEGATIVE?
Why are so many suffering dreadful Covid symptoms but still testing NEGATIVE?

A nasty dry cough, sniffles and a thumping headache. Burning muscle pain. And, if you didn’t feel miserable enough, everything you eat tastes like dust. It’s a list of symptoms the British public have become all too familiar with over the past 18 months – classic Covid. Or is it?

A fortnight ago, Mail on Sunday columnist Sarah Vine wrote about how she had been battling exactly this combination of ailments, but multiple tests – both the gold-standard PCR and rapid lateral flows – had come back negative.

Speaking on our Medical Minefield podcast, the 54-year-old mother-of-two described the phenomenon as ‘spooky’.

‘It’s so very weird,’ she said. ‘I don’t really get ill, and when I do it doesn’t tend to stop me doing things. But this really stopped me in my tracks.’

And it seems Sarah isn’t alone. Her original revelation triggered a deluge of letters from readers suffering in the same way and equally desperate for answers about their mystery illness.

FOR MORE ON THE COVID-NOT-COVID MYSTERY ILLNESS, LISTEN TO OUR MEDICAL MINEFIELD PODCAST 

Some, like 23-year-old Mollie Whittaker, have been suffering, like Sarah, with lingering symptoms. ‘It started with a continuous cough, loss of taste and smell and a slight temperature,’ said the dental nurse from Southampton.

‘I’ve done multiple Covid tests, PCR and lateral flow – all negative. I am now, three weeks later, on a course of antibiotics but they are not helping. I’m only 23, supposedly fit and healthy, yet I am really struggling and not well at all.’

Another reader, Marie Morgan, 77, from Hove, wrote: ‘I’ve never felt so ill in my life. For three weeks I experienced high temperatures, prolonged bouts of deep cold and shivering, but at night the sweats were so bad I was completely soaked two or three times.

‘My breathing was so bad I couldn’t speak or walk. My first Covid PCR test was negative but my second, two weeks later, was inconclusive – the line on the kit was neither positive or negative.’

In an effort to get to the bottom of it all, Sarah Vine has given us a blow-by-blow account of her illness – and we put it, and the accounts of our readers, to the experts.

It began, Sarah says, about a month ago, with an ‘awful kind of summer cold’.

‘It sort of went away. But then I started feeling really, really bad – and that was it. It was a runny nose, terrible headaches and that feeling you’ve just been wrung out, everything aches.’

At the start of her illness, she didn’t have any of the official Covid symptoms – a cough, fever, or loss of sense of taste and smell – but she took a DIY lateral flow test, to be safe. The result was negative.

In an effort to get to the bottom of it all, Sarah Vine (pictured above) has given us a blow-by-blow account of her illness ¿ and we put it, and the accounts of our readers, to the experts

In an effort to get to the bottom of it all, Sarah Vine (pictured above) has given us a blow-by-blow account of her illness – and we put it, and the accounts of our readers, to the experts

She says: ‘I thought, I’m just feeling tired, worn down or whatever.’

Another couple of days passed and the official Covid symptoms kicked in. She adds: ‘I suddenly lost my sense of smell and taste, which is really weird. I’ve never had that before.

‘It’s not like when you have a cold, you can’t taste things, and then if you blow your nose you can momentarily taste things. This was the absolute absence of smell and taste.

I've had every Covid symptom going... but still test negative

Mystified: Mollie Whittaker, who was left unable to move from her sofa by a Covid-like illness

Mystified: Mollie Whittaker, who was left unable to move from her sofa by a Covid-like illness

Mollie Whittaker, a dental nurse from Southampton, has suffered ‘every Covid symptom going’ on and off since the end of August.

It began as a severe lethargy, and days later, transformed into the Covid-type illness we all recognise.

‘Within a day or so of feeling exhausted I took a rapid test because I was supposed to be going to a festival that weekend,’ says the 23-year-old.

‘I’d gone out for dinner at a local restaurant a couple of days before, so I assumed I’d caught it off someone there. But the test came back negative, so I figured everything was fine.’

By the end of the festival, Mollie, who has been fully vaccinated since January due to her job in healthcare, had acquired a ‘non-stop’ dry cough, a temperature and a loss of taste and smell.

Two days after she got home, Mollie ordered a PCR test from the Government website, which took a day and a half to arrive. She took it, sent it off, and two days later the results arrived: negative. But her symptoms gradually worsened, leaving her unable to move from her sofa and feeling as though she’d been ‘thrown out of a building’. She’s been unable to work since the end of last month.

After lateral flow tests came back negative, Mollie booked a telephone appointment with her GP, who said she couldn’t possibly have Covid if she’d tested negative. She was given a prescription for antibiotics to treat a chest infection, which have yet to work. ‘I’m sure it was Covid – I know what a bad chest infection is like and this is definitely not that,’ she says.

‘The worst thing is, I worry my boss thinks the tests must be right, so I must be pulling a fast one. But all I want is for this illness to end so I can go back to work.

‘As far as I’m concerned, I’ve had Covid. The tests must be wrong.’

 

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‘And this I knew was very specific to Covid.’

She tried, as an experiment, a glass of her favourite tipple, vodka and tonic, in the hope of reawakening her taste buds. ‘Nothing. It tasted like water,’ she says. ‘Then my chest started to feel sore, and I developed a very nasty cough.’

It was then that Sarah, who had her two doses of the AstraZeneca jab at the beginning of this year, visited the Government website and ordered a gold-standard PCR test. It arrived a day later, and the result a day after that: negative. ‘I took rapid lateral flow tests too, and have continued to do so regularly,’ she says. ‘Negative, negative, negative, negative. So I don’t know, maybe the viral load is just not enough to show up.’

But as far as Sarah knew, she hadn’t been in contact with an infected person.

‘The only people it could have been are my children, but they didn’t come down with anything.

‘My daughter has been double vaccinated and my son has just had his first jab, because he is 16. And I think they both had Covid about a year ago. I guess I probably picked it up – whatever it is – at a supermarket or somewhere like that.’

Now, a month after the ordeal began, Sarah says the symptoms ‘come and go’.

‘It’s very random. Some days I feel absolutely fine. Then sometimes I wake up and feel terrible.’

Her senses are yet to return: ‘I’m still tasting things slightly differently. Before, I was really one of those people who could smell cigarettes at 200 paces. I can’t smell things like that any more at all. Food is like dust in my mouth, so I’ve been eating a lot less. Salt comes through a little bit, but not completely. Now I like eating things that have textures, so I’ve become really obsessed with popcorn – and toast. Toast has become very popular.’

Sarah’s conundrum comes as experts warn of unusually high levels of other respiratory infections spreading rapidly across communities, due to the sudden return to social mixing. So is there a new, Covid-like virus striking us down?

According to the scientists, this is unlikely. Dr Peter English, a public health expert, was ‘not surprised’ by all the bizarre ‘Covid, but not Covid’ cases.

‘I wouldn’t worry too much if you have negative tests – they are likely to be a false negative,’ he says.

Even the most gold-standard test is known to be less than 100 per cent reliable at detecting true cases of Covid-19.

‘If you take ten people who genuinely have Covid, the PCR tests will only pick out about seven of them as positive,’ says Dr English.

Lateral flow tests are also not foolproof. There’s a five per cent false negative rate in symptomatic people. In asymptomatic people, that figure is said to be roughly 40 per cent, according to an analysis in the British Medical Journal.

And the timing of the test is also key. Last year, University College London scientists analysed the reliability of PCR tests in 32 studies, and found the accuracy dropped from 89 per cent to 54 per cent when patients waited longer than four days after the onset of symptoms to get tested.

Experts say this is because, in most people, the viral load – the amount of virus a person carries in their nose and mouth – is easier to detect at high levels, which is typically at the very

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