Lyme disease: Maesteg patient spent £25k getting diagnosed

Athletic Steven Williams spent £25,000 on tests and treatments before being diagnosed with Lyme disease.

The 36-year-old, of Maesteg, Bridgend county, was in good health when he was struck down with anxiety and left bed-ridden and shaking for 18 hours a day.

Lyme Disease UK called for more research into the best protocol for treatment.

The Welsh government said guidance on the illness had been issued.

Football-loving Mr Williams said his battle to get a diagnosis for Lyme disease, which can be difficult to identify, had "totally devastated" his life.

His symptoms started in March last year.

"Over the course of one week, everything changed," he said.

"I suddenly started having very extreme anxiety. It really came on suddenly and really, really floored me. Yeah, it was quite a horrific time."

It went on for months.

"I'd wake up shaking at maybe two or three in the morning," Mr Williams said.

"I'd be unable to get out of bed for most of the day.

"It's put a huge strain on my personal life and my relationships. There was a lot of pain and a lot of fear, it was terrifying."

There is guidance from the National Institute for Health and Care Excellence (NICE) for GPs on the diagnosis and treatment of Lyme disease in the UK, with antibiotics usually helping most people to recover.

Mr Williams went to his GP, but wanted to speed up diagnosis during the pandemic, so he went private.

"I was checked for tumours in the adrenal glands and tumours in the brain," he said.

"I was back and forth to London for tests there. I was also referred on for ketamine therapy for treatment resistant depression and anxiety, which, unfortunately, didn't help and made things worse."

After spending £25,000 on scans, consultations and treatments he was diagnosed with late-stage Lyme disease in November.

There are around 900 cases of Lyme disease reported in the UK each year, according to the Health and Safety Executive.

It is estimated the actual number could be two or three times that.

Julia Knight, of Lyme Disease UK, a campaigning charity founded by patients, said Lyme disease can affect the joints, the heart and the nervous system if it was not diagnosed and treated quickly.

"The patient is producing so many different symptoms that everybody is totally baffled," she said.

"They're bounced around between neurologists, rheumatologists, orthopaedics, sometimes psychologists, and nobody ever gets to the bottom of what this person has actually been infected with."

Dr Tim Brooks, of the UK Health Security Agency, said it was important to be aware of the symptoms to get an early diagnosis, and that GPs were able to promptly prescribe antibiotics when patients had the characteristic "bullseye" rash.

He added: "If your doctor does not immediately diagnose you, we recommend you exercise caution, and speak to your doctor for advice before spending money on private tests or treatments, as some private laboratories offer tests and treatment for Lyme disease which may not be supported by scientific evidence."

Mr Williams' symptoms are ongoing.

He has been told he has late-stage Lyme disease and is trying to raise a further £30,000 for private treatment in Germany.

The NHS says some symptoms can persist if Lyme disease is left untreated and diagnosed late.

A few people who are diagnosed and treated for Lyme disease continue to have symptoms that can last for years, according to the NHS.

There is controversy around the existence of so-called "Chronic Lyme disease", a distinct condition said to resist treatment.

The Welsh government said NICE guidance on Lyme disease had been issued to make healthcare professionals and patients aware of the symptoms.

"People with Lyme disease may experience a very wide range of symptoms and will be directed to the right investigation, assessment, treatment and rehabilitation to meet their specific needs," a spokesman said.

"These services include multi-professional treatment, self-help and advice, online tools to support recovery, investigations, rehabilitation and specialist consultations as required."

Lyme disease is a bacterial infection that can be spread to humans by infected ticks.

A circular or oval shape rash around a tick bite can be an early symptom of Lyme disease in some people. The rash can appear up to three months after being bitten by an infected tick, but usually appears within one to four weeks.

Some people also get flu-like symptoms a few days or weeks after they were bitten by an infected tick.

Treatment for Lyme disease is a course of antibiotics, most people recover after treatment.

Source: NHS