At 45 I was plagued by muscle pain, brain fog and memory loss… but it wasn’t the menopause. I caught a disease while sitting on my sofa. These are the early warning signs you MUST look out for

The insect Emily Hyde found on the sofa of her Middlesex home was no bigger than a drawing pin head – but despite its tiny size the bug would go on to affect every part of her life.

At the time – unsure what it was – businesswoman Emily, 45, took a photograph of the insect and sent it to a friend, who identified it as a tick.

Emily assumed it had fallen from one of her two dogs – Lucy, a springbatt, and Mike, a rescue dog from Greece – so she flushed it away and carried on with life.

But within weeks, she recalls: ‘I developed a sore throat, headaches, aching joints and flu-like symptoms.

‘I was in bed for an entire week, which was completely unlike me. I’m someone who always carries on, so I knew something wasn’t right,’ says Emily, who is married to Daniel, 52, a plumber.

Although the worst of the illness passed, Emily never truly recovered, and in the years that followed she developed a long list of other symptoms including muscle pain, brain fog, memory loss, tinnitus, sensitivity to light and sound, and pins and needles.

‘I could barely get out of bed,’ she recalls. ‘I wasn’t living any more – I was simply existing.’

A doctor diagnosed long Covid, while a specialist thought it was a thyroid condition. It wasn’t until last year she saw an expert who unearthed the true cause of her poor health.

It turned out the tick on her sofa had bitten her without her realising – and passed on Lyme disease.

Around 5 to 10 per cent of ticks are infected with the Borrelia bacteria responsible. Once you have been bitten, the bacteria travel into the bloodstream, causing inflammation. Without treatment they can infect the heart and brain.

Many assume tick bites only occur during countryside walks in the Scottish Highlands, where there are many deer (which ticks favour to live on).

In fact, studies show there is a considerable risk even in urban green spaces.

One study, published in 2022 by the UK Health Security Agency, found that ticks are just as likely to be distributed in urban green spaces and woodland edges as in the heart of the countryside.

The risk of being bitten increases during the warmer months of April to October, peaking around now.

There has been a significant rise in cases of Lyme disease in the UK, with 1,168 people affected last year, a 22 per cent increase on 2024, according to official figures – and the true number may be even higher, as ’85 per cent of people don’t see the tick so they don’t know what to attribute the symptoms to’, says Professor Jack Lambert, a consultant in infectious disease at Mater Misericordiae University Hospital in Dublin and a leading expert on the disease.

‘So often Lyme disease goes undiagnosed for years.’

Typically one of the first signs is a bullseye rash near the bite site that occurs within days. Other symptoms include general malaise, and aches and pains can follow.

As bites tend to peak at this time of year, symptoms do get confused for ‘summer flu’, says Professor Lambert.

However, he says ‘some people will get no symptoms at all’ or ‘won’t show symptoms for months because of a delay to their immune system producing antibodies’, which is what causes the symptoms. ‘And when they do experience them eventually, people don’t think back to a tick bite when that much time has passed,’ he adds.

What’s more, symptoms can vary from one person to the other, says Professor Lambert – fewer than 50 per cent of people get the bullseye rash, for example.

‘If they do get that rash, it’s often misdiagnosed as ringworm – a fungal infection – because it looks so similar,’ he explains.

‘GPs often misdiagnose it as a regular skin infection, cellulitis, and the antibiotics they give don’t treat Lyme.’

The tiredness it causes because of inflammation often gets mistaken by doctors for chronic fatigue ‘or other conditions such as fibromyalgia, which cause symptoms of pain and fatigue’.

Yet if treatment is delayed, or Lyme disease goes untreated, it can lead to painful joints, memory problems and other debilitating problems as the bacteria spread around the body.

‘Sometimes they get Bell’s palsy – paralysis of the facial nerve so one side of the face droops like a stroke,’ explains Professor Lambert. ‘If the bacteria travels to the brain it can cause numbness and tingling, insomnia and neuro-psychiatric manifestations – such as anger and rage out of the blue.’

Around 1 per cent of those affected will develop ‘late Lyme arthritis’ – ‘horrible intractable joint pain’ and severe swelling, typically in the knees, which can occur even years after the bite.

‘Lyme disease can go to the heart and cause Lyme carditis [when the bacteria invade the heart, interfering with the electrical signals],’ adds Professor Lambert.

Yet in most cases Lyme can be treated with a simple course of antibiotics.

It was shortly after finding the tick on her sofa in August 2019 that Emily developed flu-like symptoms. She was also losing weight without any change to her eating habits and permanently exhausted.

Emily was eventually referred to an endocrinologist (hormone specialist), who diagnosed a ‘thyroid storm’ (caused by Lyme – although doctors did not realise this at the time).

This is where the thyroid gland in the front of the neck becomes overactive and releases an excess of hormones.

‘I was treated for my thyroid, but despite the medication I still felt incredibly ill,’ says Emily. ‘Everyone believed a thyroid problem was causing my symptoms, but deep down I knew something still wasn’t right.’

As Covid hit, Emily’s health deteriorated further.

‘Our business closed during lockdown, which in some ways was fortunate because I was becoming so exhausted I could barely function.

‘I’d struggle through the morning, then come home early afternoon and climb straight into bed still wearing my coat because I was constantly cold,’ she says.

Doctors suggested she had long Covid but Emily felt there had to be another explanation.

Out of desperation she went to an alternative health practitioner who suggested she look into Lyme disease, which Emily ‘had never even heard of’.

After doing some research she came across Professor Lambert online and travelled to Dublin for an appointment with him.

By then she was so weak she could no longer walk more than a short distance.

‘He listened to everything I’d been through before asking whether I’d ever been exposed to a tick,’ says Emily.

‘Suddenly I remembered the photograph I’d taken years earlier. Until that moment, I’d completely forgotten about it.’

Professor Lambert diagnosed Lyme disease and began treatment with antibiotics, which she took for 11 months.

She says: ‘Gradually my strength began to return. First, I could get out of bed. Then I could walk again. Little by little, I started getting my life back.’

Often a Lyme disease diagnosis is made by a doctor listening to symptoms – NHS guidelines say that ‘if someone shows up with a bullseye rash following a tick bite then we should not wait for a blood test, but just treat with antibiotics,’ says Professor Lambert.

There is a blood test but it is not always accurate – especially in the early stages, he adds.

After diagnosis, the treatment is usually three weeks of the antibiotic doxycycline.

‘And then if you’re not better three weeks of amoxicillin – but I have people who have three weeks of this, get better, then get worse and are not given antibiotics because they’re told they’re cured,’ says Professor Lambert.

‘In my experience some patients need a longer course of antibiotics. The guidelines only cover early Lyme.’

Recent research suggests that psilocybin, the active ingredient in magic mushrooms, could also have a role.

In a trial published in the journal Nature in February, 20 men and women with lingering Lyme disease symptoms were given two doses of psilocybin a fortnight apart.

Symptoms such as pain, fatigue, mood changes, sleep problems and quality of life all improved substantially for at least six months. However larger studies are needed to confirm the results.

Emily’s experience demonstrates how life-changing a delayed diagnosis can be.

Her illness forced her to close their successful kitchen and bathroom showrooms to focus on her recovery.

A year on from her diagnosis, Emily still feels she is not quite her old self again but is a lot better: ‘I lost almost six years of my life to this illness. I can’t get those years back, but if my story encourages just one person to recognise the symptoms earlier, seek medical advice sooner or find support, then sharing it will have been worthwhile.

lymediseaseuk.com