A man says he has had to spend nearly £150,000 on private medical care after being diagnosed with Lyme disease.
Steven Williams, 39, from Bridgend, South Wales, was leading a “normal” and active lifestyle, exercising regularly, working as a civil servant and playing in a rock band when he felt a sudden change in March 2021.
He began experiencing severe heart palpitations, fatigue and debilitating bouts of anxiety and depression, as well as new food intolerances and gastrointestinal issues – none of which he had experienced before.
Despite previously being the “steady one in the group”, Steven found himself unable to perform even simple daily tasks, such as taking out the bins, watching television, or washing himself, due to the overwhelming intensity of his anxiety and depression.
Seven months after visiting the GP and being prescribed various ineffective medicines, he says, it was discovered he had Lyme disease, a bacterial infection that can be spread to humans by infected ticks.
He says the NHS’s two-week course of the antibiotic Doxycycline would have been ineffective at his advanced stage, so since his diagnosis in October 2021, he has spent in the region of £150,000 on private healthcare around the world, having to remortgage his house to do so.
However, despite the expense, Steven said he has seen only minor improvements in his condition and is forced to live a robotic, limited life, eating a handful of plain foods and doing very few activities just to be able to function.
“I just want to regain some of my old quality of life,” he said.
“It’s small things like being able to meet friends for a meal, listen to music and do exercise.
“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 contains 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.
Symptoms of Lyme disease
NHS
A circular or oval-shaped rash around a tick bite can be an early symptom of Lyme disease in some people.
Some people also get flu-like symptoms a few days or weeks after they were bitten by an infected tick, such as:
- a high temperature, or feeling hot and shivery
- headache
- muscle and joint pain
- tiredness and loss of energy
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, visit Steven’s GoFundMe page, or for more information, visit the NHS.
The NHS says not all ticks in England 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.
