Ann Marie Elliott, who was well used to the sight of ticks having grown up on a farm, was not unduly worried when she spotted a tick on her then eight-year-old son, Brian, in the summer of 2017.
“I pulled it out. In the back of my mind I remember thinking ‘Lyme’, but I didn’t really know much about it. But, me being a nurse, I should have known more about it,” she says seven years later, with the benefit of hindsight and an inevitable layer of maternal guilt.
When Brian became unwell that winter, with high temperature and vomiting, she presumed it was the flu and brought him to their local hospital emergency department in the midlands, where he was treated with antibiotics. It was only when he continued to become periodically unwell with “vague symptoms”, she says, such as headaches, fatigue, brain fog, insomnia and sore throat, “it dawned on me, could it be the tick?”
Although she mentioned it then to doctors, they didn’t appear to pay any heed, as Brian was referred to various specialists over a couple of years before ending up with a psychologist. All areas of his life were affected: he couldn’t attend school, play sports, mix with his friends.
“It was a long road,” she says, before she started doing her own research about Lyme disease. A blood test had come back negative but she learnt that “false negatives” are quite common and in the end she self-referred Brian to Dr Jack Lambert, consultant in infectious diseases at the Mater hospital in Dublin. He diagnosed chronic Lyme disease. A further blood test had been sent to Germany, which also came back negative, but she was told that was probably because Brian had had the condition so long. The diagnosis was made on the basis of his clinical presentation.
After two months attending Dr Lambert, Brian “was better, it was amazing”, says his mother. But then he relapsed and was treated with antibiotics again for a year, along with medication to help him sleep and to boost his immune system.
[ How do I spot if my child has . . . a tick bite? ]
This treatment was stopped gradually a year ago and Brian, now aged 15, is currently doing his Junior Cert. He has been attending school when he can, but has also had the support of a tutor, under a Department of Education scheme, at their home outside Athlone, Co Westmeath. He is back playing football and attends an alternative health practitioner, which she believes helps keep symptoms at bay. “God help all the parents out there that have children with Lyme disease because it is a hard road,” she adds. “I am a nurse and I kept Googling. I was determined and did not leave any stone unturned.”
Jennifer O’Beirne of Tick Talk Ireland (ticktalkireland.org), a voluntary group for awareness and support of Lyme disease, says: “Public awareness of ticks and tick safety, as well as prompt and appropriate treatment at acute infection stage, are key to protecting families and preventing life-altering chronic illness.” She has chronic Lyme disease, believed to have been an infection contracted in her childhood but which remained a missed diagnosis until her 30s.
Another long-term campaigner for greater awareness of Lyme disease, both among the public and the medical establishment here, is Ann Maher of Co Kilkenny, who believes she contracted the illness at the age of 42, through a tick bite while visiting the US in 1995. In May this year she published a book, Lyme and Co, Me and Us, recounting how she has dealt with the disease and apparent co-infections for nearly 30 years.
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