Steven Williams says he is spent £150,000 on healthcare ‘to really feel 4 out of 10’
A person debilitated by a Lyme illness tick chew says he has needed to spend almost £150,000 on non-public medical care simply to really feel “4 out of 10”. Steven Williams, 39, from Bridgend, was dwelling a “regular” lively way of life, exercising often, working as a civil servant and enjoying in a rock band – however one week in March 2021, he felt a sudden change.
He stated he started experiencing extreme coronary heart palpitations, fatigue and debilitating bouts of hysteria and melancholy, in addition to meals intolerances and gastrointestinal points – none of which he had skilled earlier than. Though beforehand the “regular one within the group”, Steven discovered he was unable to carry out easy duties, equivalent to taking the bins out, watching tv or washing himself as a result of his nervousness and melancholy have been so intense.
Seven months after visiting the GP and being prescribed varied ineffective medicines, he says, it was found he had Lyme illness, a bacterial an infection that may be unfold to people by contaminated ticks. He says the NHS’s two-week course of the antibiotic Doxycycline would have been ineffective at his superior stage, so since his prognosis in October 2021, he has spent within the area of £150,000 on non-public healthcare world wide, having to remortgage his home to take action.
Nonetheless, regardless of the expense, Steven stated he has seen solely minor enhancements in his situation and is pressured to reside a robotic, restricted life, consuming a handful of plain meals and doing only a few actions simply to have the ability to operate.
“I simply need to regain a few of my previous high quality of life,” he advised PA Actual Life. “It’s small issues like with the ability to meet associates for a meal, take heed to music and do train.
“Since March 2021, though my signs have waxed and waned, I’ve by no means felt higher than a 4 out of 10. The NHS is a tremendous establishment, and my GP has been so supportive, however a two-week course of Doxycycline is all they’ve been capable of supply. For individuals who fall between the cracks, the system is simply too inflexible.”
Ticks which will trigger Lyme illness are discovered all around the UK however high-risk locations embody grassy and wooded areas in southern England and the Scottish Highlands, the NHS says. Steven stated he doesn’t know when precisely he was bitten and he didn’t get a “bullseye rash”, a typical tell-tale mark surrounding the chew.
However regardless of widespread perception, the rash is barely current in a minority of Lyme illness sufferers, in accordance with Johns Hopkins Lyme Illness Analysis Centre. Dwelling in South Wales, Steven spent lengthy hours strolling within the mountains and forests along with his canine, Jarvis, and suspects he might have been bitten there, although he believes it might have been any variety of days, weeks and even years earlier than his signs first confirmed.
In March 2021, he stated his life as he knew it ended abruptly as he was struck with sudden, extreme bouts of melancholy and nervousness, in addition to coronary heart palpitations. He stated he additionally instantly turned extremely illiberal to many meals sorts and skilled important gastrointestinal points, and he discovered he was simply overstimulated, which means he was unable to look at TV, socialise and even take heed to music.
“It’s very onerous to elucidate however, as somebody who used to play in a rock band, that’s a tough tablet to swallow,” he stated. Steven visited a GP in March 2021 however stated it was not till October that he was identified with Lyme illness.
“I knew one thing was not proper and that my signs weren’t attribute of me. It was terrifying,” he stated. “I’d heard of the time period Lyme illness however once I discovered I had it, I assumed, ‘Nice, now I can deal with it and be properly’. Lo and behold, it wasn’t that easy.”
Steven stated it was too late for the NHS-prescribed Doxycycline to be efficient, so he was left to search out his personal cures. He claims he has tried an enormous vary – pharmaceutical, natural and holistic – and has travelled all around the world to take action.
In February 2022, he stated he visited a clinic in Bavaria, Germany, to obtain intravenous antibiotics and whole-body hyperthermia, a remedy that makes use of warmth to boost the physique temperature, stimulating the immune response. Whereas this efficiently killed the Borrelia micro organism that trigger Lyme illness, he says, it didn’t affect the Babesia parasite, which infects crimson blood cells, inflicting flu-like signs.
Returning to Wales after his remedy in March 2022, Steven stated he sadly contracted Covid-19. Since his immune system was compromised, he stated the results of this have been extreme and he was left with lengthy Covid, inflicting fatigue, thickening his blood and additional hindering his progress.
Following this, Steven stated he has sought a number of different cures – he visited Mexico to obtain stem cell remedy and flew to New York on a number of events to work with Lyme illness specialist Dr Richard Horowitz. He additionally tried prolonged fasting and natural cures and, in February 2025, he stated he flew to India to obtain Intravenous Immunoglobulin (IVIg) remedy, a remedy which makes use of immunoglobulins, a kind of protein that include antibodies, that are taken from human blood.
Whereas this had a constructive affect on his meals intolerances, he says, he stays properly beneath full well being, scuffling with sleep and compelled to reside a strict, easy way of life. “I’ve to reside such a robotic life, simply to really feel semi-normal,” he says.
Total, Steven thinks he has spent almost £150,000 looking for therapies. He stated his course in Germany was within the area of £35,000 and his IVIg remedy in India price £20,000.
Steven stated he was pressured to remortgage his home to pay for them however he’s decided to proceed looking for an efficient treatment. His pal Alecs Donovan has due to this fact arrange a GoFundMe web page to assist him fund the following spherical of remedy in Germany, which he stated will skinny his blood and scale back the results of lengthy Covid.
“Alecs has been completely wonderful,” he says. “She’s such an exquisite individual, at all times making an attempt to assist others.
“Well being actually is wealth, so I’m so grateful to everybody who has donated. I simply hope I can get my regular life again.”
A spokesperson for Cwm Taf Morgannwg College Well being Board stated: “Whereas it isn’t acceptable for us to touch upon the care acquired by people, we encourage Mr Williams to get in contact with our issues staff instantly in order that we are able to discover his issues additional.”
To donate or discover out extra, go to Steven’s GoFundMe web page. The NHS says not all ticks carry the micro organism that trigger Lyme illness, however it’s nonetheless necessary to pay attention to ticks and to securely take away them as quickly as attainable. For extra info, go to nhs.uk/circumstances/lyme-disease.
