A father who was bedbound by Lyme disease is finally back on his feet due to a drug for alcoholism.
Ciaran Hughes, 31, developed “constant” pain, “laboured” movement and a loss of balance in March while working in Indonesia.
Multiple tests both abroad and in his native Northern Ireland came back clear, including one for Lyme disease.
Desperate, Mr Hughes sought private treatment. Although this led to his diagnosis, the prescribed antibiotics failed to ease his symptoms.
The father-of-two decided to take matters into his own hands. While researching online, he came across a doctor in the US who treats patients with the alcohol-dependency drug disulfiram.
Since forking out £66 for the medication last month, Mr Hughes already feels “brighter” and like a “proper dad to his boys again”.
Mr Hughes, who works for an offshore oil company, began to feel out of sorts 10 days after he believes he was bitten.
“I was in constant pain,” he told Yahoo UK. “My body felt heavy, my movements were very laboured and I lost my sense of balance.”
Mr Hughes was tested for Lyme disease while in Indonesia, which showed no signs for concern.
“We can’t speculate why the test came back negative,” Mr Hughes’ private medic Dr Josh Berkowitz, from the Lyme Disease Clinic, told Yahoo UK.
“It may be it was not done properly or it could be the Lyme infection hadn’t triggered the immune system response sufficiently at that time.
“When you test for an infection you are looking for the immune system reaction and markers, not the bug itself.
“The Lyme organism is known to be good at hiding and not prompting an immune system response, thus tests can come back negative.”
Once home, Mr Hughes was referred by his GP to a cardiologist when he developed chest pain.
With tests again coming back clear, things soon took a dramatic turn for the worse.
“I was suffering nerve pain, numbness in my hands, pins and needles, spasms in my arms and legs, and really strong headaches,” Mr Hughes said.
Insisting something was seriously wrong, he was referred to a neurologist, who again gave him the all-clear.
To be on the safe side, Mr Hughes was prescribed antibiotics, however, the drugs did little to ease his suffering.
“I was bedbound and unable to do the simplest tasks,” he said.
“I lost interest in things around me, couldn’t focus or concentrate for any length of time and was absolutely exhausted.”
Convinced he may have Lyme disease, Mr Hughes sought private treatment at the Lyme Disease Clinic in August.
“By this time his immune system had responded to the infection and produced surrogate markers as a reaction to the infection,” Dr Berkowitz said.
The medic prescribed antibiotics, which helped somewhat.
Convinced a more effective treatment was out there, Mr Hughes came across the work of Dr Ken Liegner in New York.
“I read trials of disulfiram being used to treat Lyme disease are in the early stages and it doesn’t work for everyone,” Mr Hughes said.
“But hundreds of patients are feeling better on it and I wanted to give it a go.”
Dr Berkowitz agreed to prescribe a low-dose of the drug, which is gradually being increased.
Mr Hughes paid £66 for 100 tablets, which are expected to last two months.
“I’ll be honest, two days after upping the dose I feel dreadful again, as more of the disease in my body dies off,” he said.
“But then I come back feeling better and stronger each time.”
Although still too ill to work, Mr Hughes is no longer bedbound or grappling with constant pain.
“I feel brighter, my thoughts are clear, my energy is returning, and I’m up and about at home,” he said. “I finally feel like a proper dad again to my boys”.
To monitor his progress, Mr Hughes has blood, liver and kidney tests every two weeks, which are so far coming back clear.
How could disulfiram treat Lyme disease?
Lyme disease is “not common in the UK”, affecting 2,000 to 3,000 people every year in England and Wales, government statistics show.
And in the US, around 30,000 cases are reported to the Centers for Disease Control and Prevention annually.
Symptoms tend to be vague and flu-like, including fatigue, fever and chills.
And not all develop the “tell-tale” bull’s eye rash around the bite, Dr Paul Taylor, of Sunnybrook Hospital in California, wrote on YourHealthMatters.
A delay in diagnosis can allow the bacteria to “infiltrate nerve cells, the brain, other organs, collagen and connective tissue, making it hard to purge from the body”, he added.
The “tenacious” pathogen often also develops resistance to antibiotics, with years of treatment being required.
Disulfiram was first suggested as an option for Lyme disease after the screening of 7,450 drug molecules suggested it was “highly active” against the bacteria in the laboratory.
Dr Liegner treated three patients with relapsing infections with the drug, which initially “eliminated the need for further antimicrobial treatment” in two of them.
One went on to relapse, however, and required further treatment.
Although unclear, Dr Liegner speculates disulfiram may “affect microbial surface membrane flexibility and function”.
It has also been shown to have anti-parasitic activity in the laboratory.
“I am cautiously optimistic about disulfiram”, Dr Berkowitz said. “It should be prescribed with great care and given to patients in tandem with the accepted protocols for treating Lyme disease.”
The NHS states a course of antibiotics is the go-to treatment for Lyme disease.
“[Disulfiram] is not a silver bullet for the disease but it could prove helpful in speeding up the recovery of some patients and boosting the progress among those plateauing in their treatment for whatever reason”, Dr Berkowitz said.
“We know disulfiram is a safe and approved drug for alcoholism but need to learn more about how and why it could help people fight Lyme disease.”
Another theory is the drug molecule is smaller than the antibiotics used to treat Lyme disease.
“It may be able to attack the bacteria in tissues and cells at a deeper level, thus helping to speed recovery,” Dr Berkowitz said.
Unlike antibiotics, disulfiram can also penetrate biofilms, which arise when bacteria “put down roots” on a surface.
This may enable the alcoholism drug to “reach bacteria not accessible to antibiotics”.
When it comes to Lyme disease, Dr Berkowitz stresses prevention is better than cure. With no vaccine, Public Health England (PHE) claims the best way to avoid infection is to dodge ticks.
It recommends walking on clearly defined paths and avoiding brushing against vegetation when possible.
PHE also advises wearing light clothing to help spot any crawling ticks.
An insect repellent may help discourage ticks, while long trousers and sleeves can reduce the amount of exposed skin the ticks could attach to.
If you spot a tick, use fine-tipped tweezers or a tick removal tool, PHE recommends.
Grasp the insect as close to the skin as possible, pulling upwards slowly and firmly.
Dr Berkowitz also recommends checking your pets for ticks after they have been outside.