In agony and bed-bound

Symptoms of Lyme can take weeks, months or even years to develop. Angela, who lives in Lutterworth in Leicestershire, doesn’t recall ever being bitten by a tick, neither did she develop a circular red skin rash, which is a hallmark of the disease but not always present.

She first became ill in her early twenties when she began experiencing extreme bone pain in her jaw and in her back from what she presumed was an injury from exercising. She went on to get intense headaches, joint and nerve pain all over, numbness in her limbs, exhaustion and “violent” muscle twitches.

“The pain was so horrific I couldn’t walk,” she said. “I had no energy at all and my body shakes violently for hours.

“I get a burning tingling sensation like I’m severely sun-burnt all over.”

A decade after her symptoms began, at aged 33 she was forced to give up work as a human resources manager. “I tried to go back part-time but eventually all my symptoms became unbearable and I became bed-bound.”

Doctors initially suspected she had multiple sclerosis but ruled that out, leaving her with no answers.

Climate change and increased risk of Lyme in the UK

Officials say Lyme disease is not common in the UK, with an estimated 2,000 to 3,000 new cases each year in England and Wales, according to Public Health England.

But the charity Caudwell Lyme say the figure is drastically higher, and there are as many as 45,000 diagnosed cases.

The National Institute for Health and Care Excellence (Nice) has admitted that prevalence data is incomplete and has called for a large study to understand how widespread the disease is.

Experts warn that global warning brings the threat of an increasing number of ticks carrying Lyme disease coming to the UK.

Caudwell Lyme say lives are being put at risk because the majority of GPs have not completed any recent training on the potentially deadly disease.

In February this year, Nice issued guidelines to tell doctors they should diagnose and treat for Lyme without waiting for blood test results if patients have the characteristic “bull’s eye” rash.

This could improve the chances of a full recovery, the NHS treatment watchdog said.

In her forties, she began suffering digestion problems, including bowel impactions. She was diagnosed with gastroparesis, sometimes called stomach paralysis.

When her weight dropped dangerously low in 2007, Angela then aged 42 and living in Rugby at the time, was admitted to University Hospital Coventry & Warwickshire.

Doctors said she had neutropenia, a condition associated with low white blood cells, a recognised complication of Lyme. It can cause abdominal pains, diarrhoea and vomiting, as well as changes in mental state.

Read more:

A mother left bedridden by Lyme disease, missed by the NHS, was denied benefits for seven months

“My weight dropped to five-and-a-half stone because I couldn’t eat as it was too painful on my stomach,” she said. “My bowels stopped working and I hadn’t been to the toilet in nine weeks. I was in agony and wasting away.

“Yet the doctors weren’t investigating the cause of my low white blood cells and stomach problems.

“I had a breakdown. I told my husband to leave me because I wanted to set him free, and we remained friends.”

Angela attempted to hang herself in the shower, and told a nurse about it the next day.

“I didn’t want to die. I’d suffered for over a decade by then. I had no hope and I’d given up.”

‘They force-fed me’

I had all my possessions taken away from me and was kept in a room on my own for five months. It was like being in a prison

Angela Bean

Angela explained that at the start of her hospital stay, she was assessed as being of sane mind, but staff kept sending psychiatrists to her.

“They had a u-turn and told me there was no medical cause for my symptoms,” she said. “I wasn’t mentally ill, I was depressed because my physical illness wasn’t being investigated and there was no end in sight of my suffering.”

Doctors called Angela’s parents to say she had two days to live, who then paid thousands to solicitors to try to work with the hospital to get her better help.

“But all they told my parents they would section me and feed me, and they wouldn’t run any other tests.”

Angela was then transferred to mental health unit the Linden Unit in Rugby, which later closed. She says she was held here against her will for five months.

It was here she was diagnosed with somatisation disorder, or SSD. This causes one or more bodily symptoms, including pain, which may or may not be traceable to a physical cause. But regardless, the person’s abnormal response causes excessive and disproportionate levels of distress.

“I was pumped with anti-psychotics,” she said. “They held my wrists and force-fed me milk, even though I told them I was allergic to casein. My skin peeled all over as a result which they said was malnutrition.

“I had all my possessions taken away from me and was kept in a room on my own for five months. It was like being in a prison.”

She was allowed to go home when her weight improved, but she said the NHS continued to fail to investigate the underlying physical cause of her symptoms.

“I moved back in with my parents,” she said. “I’d had a beautiful farmhouse, that was mortgage-free, and a lovely life with my husband and a job but I lost it all.

“I spent all my share of the house equity on trying to find answers privately.”

Detained again

Two years later, Angela’s weight dropped and she was hospitalised. She was detained for another five months at a mental health facility, the Caludon Centre in Coventry.

“Again, the mental health team where there telling me I was overreacting and it was a mental issue.

“They said they didn’t want to section me but wanted me to take anti-psychotics. I agreed to avoid being sectioned. But the medication made my legs balloon up.

“I told a nurse and she told me I could stop taking them and when someone else came back on duty they’d look into alternatives.

“But then I was told I’d refused my medication and I was getting sectioned. I was bawling my eyes out. No-one believed I was really ill.”

‘I’m scared they’ll section me again’

A few years ago, Angela’s mother was diagnosed with Lyme, and because they shared similar symptoms, it prompted her to research it.

If I’d been treated for Lyme sooner, I may not be in this state

Angela Bean

Angela tested for Lyme on the NHS but it was inconclusive, and she received a positive result from a German lab in 2016.

“I felt relieved that finally I had answers. But I showed the result to my GP and she said ‘you can put that away, I didn’t do the test so I don’t recognise that.’”

Campaigners claim that the condition can go undiagnosed by NHS tests. Some private laboratories in Europe and the US argue their testing is superior, but authorities here say they haven’t been independently validated so they cannot be accepted.

A private doctor has since confirmed the diagnosis and given her treatment. But she says she is still suffering and has days where she’s bedridden and in pain, and she now has flashing lights and pain in her eyes.

“If I’d been treated for Lyme sooner, I may not be in this state. Now I am terrified of going into an NHS hospital in case they section me again.”