'I was a zombie': Lyme disease leaves Kerry woman housebound
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Although horrendous at times, her condition — wrongly diagnosed when she was 14 as fibromyalgia — was, she recalls, “manageable”. “It just became part of my life,” she said.
“While it was always a constant struggle, it was at least manageable, and I could just about live with it.”
But then she “crashed” in October 2020 and her health took a sudden downhill dive, completely out of the blue. The disease forced her to give up her teaching job at St Brendan’s College in Killarney, Co. Kerry, “indefinitely” and left her housebound.
Some days, she was so bad she couldn't even feed herself or get out of bed. And until she got her Lyme disease diagnosis — after sending blood samples to a clinic in Germany — life was “a living nightmare”.
Although Lyme disease is usually characterised by the appearance of a rash, she never got the rash. She does remember constantly being bitten by ticks as a child after many hours spent in her parents’ garden at their house in rural Kilgarvan, but nobody thought they were dangerous.
Karin is speaking to promote today’s Lyme Disease Awareness Day, which is the start of a month-long awareness campaign by sufferers and their advocates.
She hit the headlines earlier this year not just because of the amount of money she managed to raise from a GoFundMe page but also because of two dramatic “before and after” photos of her that appeared with the appeal.
One, taken before her recent Lyme disease-related health “crash”, showed her to be a vibrant, smiling and healthy-looking woman in her early 20s.
But in the other, which was taken of her in the throes of the effects of the debilitating disease, she was almost unrecognisable, with her eyes sunken into her pale and sullen face.
Her case was taken up by friend and Kerry County Council councillor Maura Healy-Rae, who helped raise awareness and support for her in February.
At the time, treatment for the disease — which is caused by bacteria spread through the bite of an infected tick to a person — in the St George’s Clinic, Germany, for four weeks was the only option open to Karin.
The cost of intensive treatment there was €40,000. And that didn’t include travel, post-treatment care, and further appointments, which could at least more than double the €45,000 she asked for on GoFundMe.
Her plight attracted the support of more than 1,800 people within days of her launching her appeal, and she managed to raise €76,765.
“I’m not lucky to have got the disease because it has had a dramatic and profound effect on my life,” the 26-year-old primary school teacher says from her home in Kilgarvan, Co Kerry. “But I am lucky in that I was able to raise money so I could be treated abroad.
Karin is one of a number of people who — every year — are forced to travel abroad to be treated. Indeed, it is estimated that chronic Lyme disease sufferers have paid up to €63m in the last 12 years to be treated abroad.
Almost all were forced to take out bank or credit union loans to raise tens of thousands for treatment in countries like Poland, the US, and Germany. This is because their condition is so chronic that treatment available here doesn’t work and they have no choice but to go abroad.
Professor Jack Lambert, Ireland’s leading Lyme disease specialist, is adamant that the prevalence of the disease — as well as health issues associated with other infections passed from tick bites — is grossly underestimated.
As well as being a professor in Medicine and Infectious Diseases at Mater Misericordiae University Hospital and UCD School of Medicine, Dublin, he has also been director of the National Isolation Unit for Highly Infectious Diseases at the Mater and a member of the National Viral Hemorrhagic Fever Committee of the HSE.
Prof Lambert is also the lead trustee of the Lyme Resource Centre, whose mission is to advance education on — and treatment of — Lyme disease and related tick-borne infections.
He decries the way the disease is handled in Ireland and believes more should be done to help sufferers in this country.
He makes the point, for example, that vets are better at both testing for and treating the various infections that can be passed onto animals from ticks than GPs.
“We don't know the full scale of the problem in Ireland because we don't keep track of it,” he said.
“The health service will say there are around, maybe, a couple of or three hundred cases every year.
“But there's been a number of studies done, including one in Limerick, which have estimated there are maybe up to 2,500 cases of Lyme disease a year.”
Added to the lack of knowledge about how common the disease is are also the other infections associated with ticks.
He said: “What is hardly on people’s radar is that ticks carry other things besides Lyme disease.
“There are other bacteria in the foreground of a tick and there's little or no knowledge or understanding of other infections that are spread by ticks.
“That said, vets have done studies on this.
“They treat all these different infections in animals that are caused by ticks.
“But in humans, there's not much recognition or even testing for these other infections that ticks carry.
According to Health Minister,Stephen Donnelly there is “no need for Irish residents to travel to other countries for diagnosis or treatment” for Lyme disease.
Such a statement, made on his behalf in a March 22 letter to Kerry County Council by his private secretary, flies in the face of the experience of many Lyme disease sufferers.
But it is also one the HSE, which has previously accepted the true incidence of early-stage Lyme disease in Ireland is not known and that there is “an underestimate of the true level of disease”, has common ground with.
While it says there are two health service schemes which will reimburse people who get treated abroad, the HSE pointed out: “The reimbursement is at the cost of the treatment abroad or the cost of the treatment in Ireland, whichever is the lesser.
“Only treatments which are provided or funded by the HSE for the treatment of Lyme disease are eligible for reimbursement.”
At present, the treatment here revolves mainly around a two-week course of antibiotics.
But, as Prof Lambert points out, while there may well be a recognised way of treating Lyme disease in Ireland, it just doesn’t suit a great many sufferers.
He said: “Most of the consultants in Ireland say you’re cured after two weeks of antibiotics.
“But the studies show that less than about 50% of people are cured with two weeks of antibiotics but the party line is: two weeks and that’s it.
“Oddly enough, if you have pneumonia and you aren't getting better and you get two weeks of antibiotics, you’ll be given more.”
Ann Maher, who runs Lyme Chat-Eire, a support and advocacy group for more than 630 Lyme disease sufferers in Ireland, is one of the organisers — along with Tick Talk Ireland — of this Lyme Disease Awareness Day rally outside Leinster House from 11am to 2.30pm on Wednesday.
“We’d really love more recognition from the medical profession and from the social welfare for people too sick to work,” she said.
“We are trying everything to raise awareness and we have been for years and we feel we are just banging our heads against a wall of indifference.
“The problem is far bigger than the health service will accept.”
The Rock of Cashel was lit up in green on Sunday night in recognition of Lyme Disease Awareness Day and the Mansion House in Dublin is due to be lit in green on May 12, as part of a month-long attempt to raise awareness.
“Even if we can get even a few county councils to put up warning notices in their public parks, then we will have made a difference and that is what we are trying to do this month.”
Karin has four words to describe what she was like before she started her treatment in Germany: “I was a zombie”.
The treatment has, she now says, given her a second lease of life.
“I felt I was just rotting away at home because I wasn’t being treated,” she said.
“So, yes, I am very, very lucky to have been given a second chance.
“The people I feel sorry for are those chronic sufferers who have no second chance, and who have now crossed the path of no return.
“If anything good can come from my experience it is that people pay attention to what is going on.”