Lyme disease: ‘I can’t stop taking antibiotics, otherwise I’ll be bedridden very quickly’

Two experiences of the illness outline the difficulty in getting a diagnosis and the severity of symptoms

Sometime after Dr Manus Biggs contracted Lyme disease, he began noticing just how many ticks, the tiny creatures that carry the crippling pathogen, were nesting in the grass surrounding his Galway home.

In 2018 a small bite from one of these parasitic arachnids caused him to develop a chronic form of the condition and thus begin a gruelling battle with symptoms that endure to this day.

“[It was] either in my back garden or in the local woods. But I have been bitten by ticks I’d say five or six times at least,” he says. “After I became more aware of the situation I couldn’t go out into the garden really without finding a tick on my shoe or on my T-shirt, whatever it might be ...[It] is getting worse and worse. My garden was teeming with them.”

But for Biggs the true epiphany of his near five-year experience with the disease, including a regimen of heavy antibiotics and other treatments, has been about the medical understanding of the illness, research and treatments, going right to the core of accepted western medical practice.

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Awareness of ticks and the risk of the bacteria they carry is not new — in some parts of the countryside warning signs guide walkers away from infested undergrowth, while parents routinely scan their children for attachments after a day playing outside.

The first symptom Biggs noticed was tiredness, something he dismissed as the rigours of his work at NUI Galway where, as an associate professor in biomedical engineering, he leads a team developing advanced medical technology.

A key problem is the difficulty in diagnosis — one GP assured him he did not have the disease, that there was ‘no point pursuing this’

However, sometime later he suffered a bout of Lyme related meningitis. His condition deteriorated: exhaustion, weakness, severe neurological disorders including vision impairment and communication issues left him housebound and often bedridden.

A key problem is the difficulty in diagnosis — one GP assured him he did not have the disease, that there was “no point pursuing this”.

However, subsequent HSE testing confirmed the illness after six months. At the same time, he received positive results from a German lab. By this stage he was very ill.

A specialist neurologist asked him if he had been tested for Lyme disease and started him on a course of IV antibiotics which got him back on his feet. However, once this hospital treatment ended, he declined rapidly.

“It’s very aggressive. The cessation at all of therapy just leads to disaster,” he says, listing symptoms from extreme dizziness to problems processing sound and light.

Another specialist doctor began prescribing antibiotics. Today he takes three kinds twice a day which prevent replication of the bacteria but does not kill it, something he likens to a “net on top of a passive wild boar”. His own experiments have allowed him to refine a model of treatment that appears to keep the illness at bay.

“Now the position I’m in is that I can’t stop taking antibiotics, otherwise I’ll be bedridden very quickly. So essentially it’s a prophylactic therapy, I take huge amounts of high dose antibiotics and that’s still ongoing.

“I’m stuck in a position of anxiety because there’s always that sword of Damocles hanging over me.” By this he means the possibility of having to stop the medication in the event of a negative response.

The effectiveness of the antibiotics has led him to question medical orthodoxy, even though he knows this provokes a backlash. He came around to the belief, contrary to various studies, that Lyme disease is a persistent infection that requires more research and therapies than just simple antibiotic treatment.

“The realisation of that really impacted my worldview in some respects; my educational foundation taught me to accept that a significant body of published work which reports the same conclusions cannot be refuted,” he says. “Unfortunately, I have been exposed to the reality that a lot of scientific studies, even those published in the most reputable journals, can be incomplete or just plain wrong.”

As Biggs continues his battle against the illness, thousands of kilometres away in Montreal, Irishman Dermot O’Sullivan (30) is hoping his is now behind him.

O’Sullivan believes he picked up the disease from a tick while fishing in the Eastern Townships area about an hour outside the city, although like many others he cannot be sure.

Initially believing his infection was a reaction to a Covid vaccine, O’Sullivan, who runs a music management company in the city, brushed it aside. Later, however, symptoms including breathlessness and a large red rash across his chest, convinced him to go to hospital.

Doctors immediately observed his heart rate was very low and put him in an emergency bed. A monitor found the rate dipping and climbing, setting off alarms.

“It was very concerning for them how low it was and they were kind of surprised that my body was functioning,” says O’Sullivan. An infectious disease specialist suspected Lyme disease and it was confirmed through a blood test after six days.

The condition was causing a complete heart block where two parts were beating out of sync. Just eight or nine hours after arriving at the emergency department he was put on IV antibiotics and soon transferred to a general hospital with a cardiac ICU.

“At that point they were also telling me that I might need a pacemaker if my heart doesn’t have the ability to come back and beat by itself,” he says.

They told me in the hospital was that I was lucky that I was so young, that my heart was able to handle it and able to recover

—  Dermot O’Sullivan

“They were telling me that there’s this kind of more rare case with Lyme disease where you can kind of get a carditis where it creates a heart block. And so they were pretty confident by that second day that it’s Lyme disease.”

O’Sullivan was eventually weaned off medication and after seven days in hospital allowed to go home where he continued IV antibiotics for the next two weeks.

“One thing they told me in the hospital was that I was lucky that I was so young, that my heart was able to handle it and able to recover,” he says. “When I left the hospital I was getting a blood test once per week and then I was going in to see the doctor. I did that for two weeks and then basically they told me on the last day that my blood tests were looking good and that all the inflammation and the presence of infection was gone so they were kind of happy enough to say that I had beaten the Lyme disease.

“I guess it’s such a wide-ranging disease in terms of impact and in terms of when symptoms can come and how quickly they can affect you that ... I can understand why it’s a challenge to tackle it.”

Mark Hilliard

Mark Hilliard

Mark Hilliard is a reporter with The Irish Times