4 days ago
Meath man's plea for help for his wife who has had life taken from her by chronic Lyme disease symptoms
That's how long Meath native Anne-Marie has been living and dealing with the debilitating effects of chronic Lyme disease, the symptoms of which have robbed her of so much of who she used to be.
Now though, they are hoping that a GoFundMe page set up to help her receive promising – albeit expensive – treatment at the Klinik St Georg in Germany.
This was described by Daire as 'the only chance to get some of her [Anne-Marie's] life back.'
A lover of all things outdoorsy and described by Daire as being in the 'prime of her life' at 33, Anne-Marie would once have thought nothing of heading off up Ireland's highest mountain, Carrauntoohil, if the mood took her.
She was trained in social care and was heavily involved in supporting women and children fleeing domestic violence, survivors of the Magdalene laundries, and children with special needs.
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Now though, the 36-year-old struggles to make to it the end of her street – approximately a 200-metre distance – and even if she does, the only reward for her efforts is a week spent languishing in bed, drained by fatigue. Daire added that she is now almost fully dependent on him and others for even the most basic of needs, including showering and eating.
It was in February of 2022 that Anne-Marie first began to feel unwell, eventually becoming bedbound and barely able to muster enough strength to eat or even speak. Unable to sleep for more than a few hours, even with the help of medication, her weight dropped to a mere 48kg, just 7.5 stones.
What followed was three years of the couple going to see countless specialists including cardiologists, neurologists, immunologists, infectious disease specialists, gastroenterologists, sleep and respiratory experts, and many more.
As well as this, Daire said that she became so frail she didn't have the strength to put a jumper on herself or pull the blankets up over herself. She had severe light and sound sensitivity and has had to spend most days and nights in a dark room with noise-cancelling headphones and an eye mask on, in pain, and unable to sleep.
Having exhausted all of the treatment options available here in Ireland, the couple have moved back in with their parents in an effort to save money and have been forced to turn to crowdfunding to help raise enough money to get Anne-Marie the potentially life-saving treatment at a prestigious clinic in Germany.
Daire, also a Meath native, spoke to the Irish Independent this week about the fundraiser – it currently sits at just over €26k raised of their target amount of €62k – and explained, in heartbreaking fashion, just exactly what this disease has cost them both.
"It [Anne-Marie's illness] is our everything. It's something that we manage sometimes from hour to hour, day to day. "The disease takes everything from you. Anne-Marie was a very active person before all this. Down in Killarney, we used to love hiking and we would have lived right next to one of the access points to Carrauntoohil. We'd have been up there any time the sun was shining,' he said.
"Now though, the simple act of walking to the top of the street which is 200 metres maybe, this will leave her in bed for the rest of the week,' he continued.
Getting sick right at the tail end of COVID, Daire said, was possibly the worst timing as he believes that early Lyme disease symptoms were crucially missed by medical professionals here in Ireland.
"I think the first 14 months were probably the hardest. We just didn't have a clue, we were grasping at straws and relying on a system that doesn't know this disease well and it was also at a time, in the country, when the health service was firefighting the last of the bad COVID waves."
"To be sick in that climate, we were being told that some of the more ambiguous symptoms of Lyme were probably just COVID and we ended up in this misdiagnosis loop and you start losing time,' he said.
With almost half of the money now raised from the fundraiser, Daire is, thanks to talking to others who have been through the treatment in the clinic that Anne-Marie can get back to something resembling her normal life.
"There's a high percentage of success there. The clinic has some people who don't respond but we've spoken to quite a few Irish people who have been there. One of them actually was a young lady from Kerry, Karen O'Shea. She went over there to the clinic in a wheelchair and after the treatment, she was able to walk onto her flight. It was a huge night and day turnaround for her."
"A lot of the patients from the clinic that we've spoken to are all in the same boat. They might not have the full lease of life that they had before but at least they are no longer constrained/stuck in their bedrooms or prisoners in their own home."
The treatment, he says, will be intensive.
"They will give the person a triple course of IV antibiotics on the week leading up to a hypothermia session where they'll then put the person under anesthetic before bringing their core temperature up to 42 degrees. This is right on the threshold of what the human body can tolerate. They'll keep it at this temperature for multiple hours with the idea being that the heat is able to access places that the antibiotics can't go to and that the Lyme likes to hide in."
In total, the in-patient treatment in the clinic will be five weeks long and there will be six months of follow-up after this when Anne-Marie is at home.
All money raised from the treatment will go towards:
