'Normal and active' Welsh man struck down after tick bite 'changed everything'
He recounted the onset of severe heart palpitations, fatigue, and crippling anxiety and depression, along with new food intolerances and gastrointestinal problems. The man who used to be the "steady one in the group" suddenly found himself struggling with basic activities like taking out the rubbish, watching telly or even bathing due to overwhelming mental health issues.
After seven months of ineffective treatments prescribed by his GP, it was finally identified that he had Lyme disease, a bacterial infection transmitted by infected ticks. He argued that the NHS's standard two-week antibiotic treatment wouldn't touch the sides at his stage of the illness, leading him since his diagnosis in October 2021 to spend roughly £150,000 on international private healthcare, even remortgaging his home to cover the costs.
Despite spending a fortune on treatment, Steven has only seen marginal improvements in his health and is stuck living a monotonous, restricted life, subsisting on a few bland foods and engaging in minimal activities just to get by.
"I just want to regain some of my old quality of life," he confided to PA Real Life. "It's small things like being able to meet friends for a meal, listen to music and do exercise.", reports Wales Online.
"Since March 2021, although my symptoms have waxed and waned, I've never felt better than a four out of 10. The NHS is an amazing institution, and my GP has been so supportive, but a two-week course of Doxycycline is all they've been able to offer. For people who fall between the cracks, the system is too rigid."
Ticks that may cause Lyme disease are found all over the UK but high-risk places include grassy and wooded areas in southern England and the Scottish Highlands, the NHS says. Steven said he does not know when exactly he was bitten and he did not get a "bullseye rash", a typical tell-tale mark surrounding the bite.
But despite common belief, the rash is only present in a minority of Lyme disease patients, according to Johns Hopkins Lyme Disease Research Centre. Living in South Wales, Steven spent long hours walking in the mountains and forests with his dog, Jarvis, and suspects he may have been bitten there, though he believes it could have been any number of days, weeks or even years before his symptoms first showed.
In March 2021, he said his life as he knew it ended abruptly as he was struck with sudden, severe bouts of depression and anxiety, as well as heart palpitations. He said he also suddenly became highly intolerant to many food types and experienced significant gastrointestinal issues, and he found he was easily overstimulated, meaning he was unable to watch TV, socialise or even listen to music.
"It's very hard to explain but, as someone who used to play in a rock band, that's a hard pill to swallow," he said. Steven visited a GP in March 2021 but said it was not until October that he was diagnosed with Lyme disease.
"I knew something was not right and that my symptoms weren't characteristic of me. It was terrifying," he said. "I'd heard of the term Lyme disease but when I found out I had it, I thought, 'Great, now I can treat it and be well'. Lo and behold, it wasn't that simple."
Steven said it was too late for the NHS-prescribed Doxycycline to be effective, so he was left to find his own remedies. He claims he has tried a huge range – pharmaceutical, herbal and holistic – and has travelled all over the world to do so.
In February 2022, he said he visited a clinic in Bavaria, Germany, to receive intravenous antibiotics and whole-body hyperthermia, a treatment that uses heat to raise the body temperature, stimulating the immune response. While this successfully killed the Borrelia bacteria that cause Lyme disease, he says, it did not impact the Babesia parasite, which infects red blood cells, causing flu-like symptoms.
Returning to Wales after his treatment in March 2022, Steven said he unfortunately contracted Covid-19. Since his immune system was compromised, he said the effects of this were severe and he was left with long Covid, causing fatigue, thickening his blood and further hindering his progress.
Following this, Steven said he has sought several other remedies – he visited Mexico to receive stem cell therapy and flew to New York on several occasions to work with Lyme disease specialist Dr Richard Horowitz. He also tried extended fasting and herbal remedies and, in February 2025, he said he flew to India to receive Intravenous Immunoglobulin (IVIg) therapy, a treatment which uses immunoglobulins, a type of protein that contain antibodies, which are taken from human blood.
While this had a positive impact on his food intolerances, he says, he remains well below full health, struggling with sleep and forced to live a strict, simple lifestyle. "I have to live such a robotic life, just to feel semi-normal," he says.
Overall, Steven thinks he has spent nearly £150,000 seeking treatments. He said his course in Germany was in the region of £35,000 and his IVIg treatment in India cost £20,000.
Steven said he was forced to remortgage his house to pay for them but he is determined to continue searching for an effective remedy. His friend Alecs Donovan has therefore set up a GoFundMe page to help him fund the next round of treatment in Germany, which he said will thin his blood and reduce the effects of long Covid.
"Alecs has been absolutely amazing," he says. "She's such a wonderful person, always trying to help others.
"Health really is wealth, so I'm so grateful to everyone who has donated. I just hope I can get my normal life back."
A spokesperson for Cwm Taf Morgannwg University Health Board said: "While it is not appropriate for us to comment on the care received by individuals, we encourage Mr Williams to get in touch with our concerns team directly so that we can explore his concerns further."
To donate or find out more, visit Steven's GoFundMe page. The NHS says not all ticks carry the bacteria that cause Lyme disease, but it is still important to be aware of ticks and to safely remove them as soon as possible. For more information, visit nhs.uk/conditions/lyme-disease.
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