Former city DJ Tom Davies is raising awareness of Lyme disease which left him fearing for his life

A former Liverpool DJ has warned people to be aware of Lyme disease after the little-known illness left him fearing for his life and feeling like he was losing his mind.

Tom, 31, who was a familiar face in clubs and bars around the city, is only just back to health and fitness after contracting the disease in April last year.

And he says: “It’s rare but it needs to be taken seriously, and I want people to know about the disease and its symptoms.

“For months, tests came back clear, and I was told there was nothing wrong with me … it was frustrating and really frightening.”

He adds: “I am quite lucky, as bad as it was.  Some people suffer for years.

“I had never heard of Lyme disease and so I want to get the message about it out there. I don’t want anyone else to struggle and suffer like I did.”

Lyme diseaseis a bacterial infection that can be spread to humans when they’re bitten by infected ticks, and it’s usually easierto treat if it’s diagnosed early.

A circular, ‘bullseye’, or oval shape rash around a tick bite can be an early symptom of Lyme disease which can appear just days after being bitten – or up to three months later.

Other symptoms can include headaches and high temperatures or feeling hot and shivery, swellings around the bite, muscle and joint pain, tiredness and loss of energy, and more.

Not all ticks in England carry the bacteria that causes Lyme disease, but it’s still important to be aware of them and, if you see them, remove them as soon as possible, just in case. But it might be that you’re not aware of the bite – and that it happens while you’re away on holiday, as it did with Tom.

Tom, originally from Huyton but who now lives in Liverpool city centre, had been to see his mum who lives in Tenerife.

He explains: “About four days after I got back I started having strange symptoms. I woke up with a start in the early hours one morning. I had a swollen temple, and it was like I’d had an electric shock through my heart.

“I went from a deep sleep to a state of panic, even though I wasn’t stressed at all. My heart was beating like crazy and it took ages before I could calm it down. I even thought I had a brain tumour because my head was throbbing and I had this huge lump on the side, and the room was spinning.

“It was awful, out of the blue, and very frightening.”

Tom got a friend to take him to hospital where blood tests and scans failed to reveal anything was wrong. 

Among the conditions he was tested for was a bleed to the brain, but everything came up as negative.

Eventually Tom was discharged and walked home from hospital, continuing to feel unwell one minute and fine the next: “I left the hospital with mixed emotions, glad that I’d not had a bleed om the brain, but worried because I knew that whatever it was, I still had it.”

Tom stopped taking liver supplements he’d been having for concentration and boosted energy in case they were causing his sudden symptoms, but nothing made it better.  It was his family who suggested he might have been bitten on holiday, due to the lump on his head, and the fact that it had all started just days after he had returned from the Canaries.

And, although everything fell into place for him, getting help for his condition or diagnosing it didn’t.

Over the weeks and months that followed Tom found himself regularly at the doctor’s or the hospital, suffering with horrendous symptoms which left him fighting for breath and on the verge of passing out.

Test after test failed to find anything although Tom, who got a new job as an event chauffeur in summer last year, knew something was seriously wrong. 

“My chest muscle on one side went flat, and it felt like something was eating away at it,” he says. “I had a private brain scan which showed a swollen lymph node in my temple which is a sign of infection, but it couldn’t say what that infection was.

“I was so ill I knew something was wrong, it wasn’t like me, but people started suggesting it could be a mental health issue, and I was suffering from anxiety. I knew it was more than that.”

Over time Tom developed increasing symptoms which, having Googled, he attributed to Lyme disease, ranging from the initial temperatures, racing heart and dizziness, to light sensitivity and a stiff neck.

He even developed a burning rash on his back – all signs of the next stages of the disease – and he even started to suffer from memory loss and confusion, another classic, ongoing symptom.

“Muscle wastage is another and I lost a stone and a half, even though I was eating thousands of calories a day,” he continues. “My face and shoulder went numb – facial palsy is a stage two symptom.

“I was losing the battle and even my family and friends thought I might be depressed but I knew that wasn’t it.”

Antibiotics he was briefly given – or got from friends – together with natural antibiotics and a Lyme disease tincture he got online, alleviated his suffering but it began again as soon as he stopped taking them, convincing Tom that despite doctors saying it wasn’t Lyme disease, it was!

Eventually after seeking treatment in Ireland, blood tests were sent to Germany and doctors there confirmed it WAS Lyme disease, which meant Tom immediately began taking the correct medication and treatment.

Only now does he feel like it is more or less out of his system, although he still suffers from headaches and brain fog. Lyme disease can remain present for years with sometimes far-reaching consequences.

Tom says: “Lyme disease is horrendous, and I want people to be more aware and the medical profession to take it more seriously into consideration, so that it can be diagnosed as early as possible.

“I was becoming more and more frightened and feeling like I would never get the answer and treatment I was convinced I needed. 

“I am now a member of Lyme Disease UK which raises awareness and offers advice, but it needs to be further at the front of people’s thoughts. I just want to push the message out there and make everyone aware of this disease. 

“No-one should have to suffer and struggle to get a diagnosis like I did.”

Visit Lyme disease UK’s website for more support and information HERE.

Or you can get more guidance from the NHS HERE.

Get the latest for Liverpool HERE.