A man left disabled by a tick bite causing Lyme disease has revealed he’s spent close to £150,000 on private healthcare just to feel “four out of 10”. Now, he’s warning others that something as simple as a walk could be putting them at risk.
Steven Williams, 39, used to live an active life before his diagnosis, going to the gym, working as a civil servant and jamming with his rock band. But in March 2021, his life took a rapid downward turn.
Out of the blue, Steven recalled suddenly experiencing intense heart palpitations, fatigue and crippling anxiety and depression, alongside food intolerances and gastrointestinal problems. He found himself struggling with day-to-day activities like taking the bins out at his home in Bridgend, South Wales, or even bathing due to his intense anxiety and depression.
Seven months on in October 2021, following numerous GP visits and prescriptions, doctors finally diagnosed Steven with Lyme disease. But the disease, a bacterial infection transmitted by infected ticks, was caught at too late of a stage for any action to be taken, reports the Mirror.
Steven claims that standard NHS two-week antibiotic treatment would ‘not have touched the sides’ due to the advanced nature of his disease, resulting in him spending £150,000 on private treatments abroad.
Despite paying a fortune – and even remortgaging his home to cover costs – Steven has seen limited improvement in his health. Living on a limited diet with minimal physical activity, he misses his ‘past’ self. Steven said: “I just want to regain some of my old quality of life. It’s small things like being able to meet friends for a meal, listen to music and do exercise.”
He added: “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.”
Lyme disease-carrying ticks can be found throughout the UK. Grassy or wooded areas in the South of England and Scottish Highlands pose a more significant risk, according to NHS warnings.
Steven confesses he’s uncertain when the bite occurred and never developed the distinctive “bullseye rash” commonly regarded as a telltale indicator of a tick bite. Yet, despite widespread assumptions, this distinctive marking only manifests in a small proportion of Lyme disease instances, according to Johns Hopkins Lyme Disease Research Centre.
Before his diagnosis, Steven regularly explored the mountains and forests with his companion dog, Jarvis, and believes that’s likely where the bite took place. Nevertheless, he recognises it might have occurred at any moment – days, weeks, or potentially years before symptoms initially emerged.
In March 2021, his life was thrown into chaos when he began experiencing severe bouts of depression and anxiety, coupled with heart palpitations. He also developed a severe intolerance to numerous foods and suffered from significant digestive issues, while becoming easily overwhelmed by stimulation – making it impossible for him to watch television, socialise or enjoy music.
Steven said: “It’s very hard to explain but, as someone who used to play in a rock band, that’s a hard pill to swallow. I knew something was not right and that my symptoms weren’t characteristic of me. It was terrifying.”
He added: “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 explained that he has tried plenty of methods to try and reduce his symptoms – pharmaceutical, herbal and holistic – and has travelled the world in search of a cure. In February 2022, he visited a clinic in Bavaria, Germany, where he underwent intravenous antibiotics and whole-body hyperthermia, a technique designed to elevate body temperature and boost the immune system.
While the treatment succeeded in eradicating the Borrelia bacteria responsible for Lyme disease, he claims, it didn’t affect the Babesia parasite, which infects red blood cells and causes flu-like symptoms. Returning home after his treatment, Steven’s luck took another turn when he caught Covid-19.
Already struggling with a weak immune system, he said the Covid-19 diagnosis was devastating, resulting in Long Covid symptoms such as exhaustion and blood thickening.
Steven also sought out further alternative treatments, travelling all the way to Mexico for stem cell therapy and New York to consult with a Lyme disease expert, Dr Richard Horowitz. Desperate to rid himself of the disease, he experimented with extended fasting and herbal remedies and even flew to India in February this year to go through Intravenous Immunoglobulin (IVIg) therapy. The therapy involves using immunoglobulins, antibody-containing proteins sourced from human blood.
The treatment did have a good impact on his food intolerances, Steven admits he is still far from fully recovered, battling sleep problems and sticking to a strict, basic routine. “I have to live such a robotic life, just to feel semi-normal,” he said.
Steven reckons he’s spent nearly £150,000 in his search for treatments. He revealed that his time in Germany cost about £35,000 and the IVIg treatment he had in India set him back £20,000.
To help grow Steven’s fund for his next treatment in Germany, which he hopes will ease his long Covid symptoms by thinning his blood, his mate Alecs Donovan has started a GoFundMe campaign.
Steven said: “Alecs has been absolutely amazing. 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 stated: “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 support or learn more, you can visit Steven’s GoFundMe page. The NHS advises that although not all ticks carry Lyme disease bacteria, it’s crucial to be aware of ticks and remove them safely as soon as possible – you can find out more about Lyme disease here.
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