Sheep farmer and knitwear factory employee Anne Melly from Ardara in Co Donegal grew up on a farm. Ticks were part of her childhood.
“There was always ticks,” she says, “in the bog, at the hay. It could be days before you’d feel the itch and then you’d see the little devil. More often than not you’d get the tick out and the head would still be in. I can’t say when I got the Lyme disease infection but I know I’ve had bites all through childhood.”
Anne had no health problems until 10 months after her twin boys were born in 1994, she states.
“In 1995 I came down with a horrendous summer flu and for 25 years I never really recovered.”
Anne experienced fatigue, severe joint pain and brain fog.
“There was a whole ream of symptoms that got gradually worse over the years,” she says. “I kept pushing to find out what was wrong with me because I knew I went from being very well to being not well at the age of 27. My ‘get up and go’ was gone. I wanted to do things but I physically couldn’t do them, but I probably pushed myself way too much over the years.”
Anne was eventually diagnosed with fibromyalgia (a condition that causes widespread pain and chronic fatigue).
“I felt that I at least had a name for what was wrong with me but my condition continued to deteriorate and I always felt there was something else [the matter]. 2018 was a very, very low time for me, pain wise.”
The turning point for Anne came when she was watching Ear To The Ground a few weeks later.
“Two guys were interviewed and it was like they were talking about me. Tears were literally rolling down my face as I watched,” she says.
“The next day I ordered the blood test kit from the lab they spoke about in Germany. The results showed that I had late-stage Lyme disease. It was like winning the lotto initially. I let out a ‘whoop’ when I opened the letter but then I thought, ‘Oh Jesus, what have I got, where do I go from here?’”
Following a Lyme disease conference in May 2019 organised by the support organisation Tick Talk, Anne made contact with one of the speakers, Dr Jack Lambert, a consultant in medicine and infectious diseases in the Mater Hospital.
Some days I was so unwell I didn’t want human interaction. I just love the farm. It’s all hill but it’s mine
“He has been my saviour. I’m not cured and I probably never will be, but I would say I have improved 60% with treatment.”
She remembers one remarkable difference after feeling better.
“I could read a book for the first time in 15 years and remember the story as my memory had improved so much,” she says.
Not enough awareness
Anne believes that there still isn’t enough awareness about Lyme disease among GPs.
“If a person develops the bullseye rash, it’s easy to get a diagnosis but about 70% of people don’t develop the rash. They may just have flu symptoms or they may not develop symptoms until much later. Early diagnosis means that you are given antibiotics for 21 days to kill the infection.”
While her experience of pain at the moment “is a bit up and down”, Anne has returned to work after a two-year break and is now thinking of lambing time ahead for her small flock.
“Animals were my saviour,” she says. “Some days I was so unwell I didn’t want human interaction. I just love the farm. It’s all hill but it’s mine.”
Anne’s advice to readers is to be very aware of Lyme disease, especially children and particularly if you’ve sat down in a wood or while hillwalking.
“Up to when I became ill in 2016, I was very busy and very active,” he says. “I was contracting, I did plant hire and was agricultural contracting as well.”
Eddie was aware that he had been bitten by a tick. He had removed one from his right forearm one day when working in the Scottish Highlands in 2013.
“We were aware on the site of ticks and Lyme disease,” he says.
“The Highland Council had told us and as foreman and first aid officer on the site I made others aware of the risk too. I removed the tick carefully although I could have been bitten by other ticks that didn’t latch on. At the time I had no rash or ailments of any description, so I didn’t go to a doctor.”
Eddie experienced loss of strength in his legs about two years later, at the age of 43, however.
“To see me walking you’d think I was nearly drunk,” he says.
A long road
Eddie was referred to hospital after his wife encouraged him to see a GP.
“In hospital, I asked them to test for Lyme disease because it was in my mind. I don’t think they had heard of it. First they thought it was MS and then they thought it was TB, but I said, ‘please could you rule Lyme disease out for me?’ The blood tests didn’t pick it up but several MRIs and painful lumbar punctures later, the Lyme bacteria was identified in my spinal fluid. I’d been in hospital for seven weeks at that stage. I was given different intravenous antibiotics then.”
Eddie was relieved to finally get a diagnosis, but it was still a shock knowing what he had, and another seven weeks of hospital physiotherapy were to follow.
I was suffering quite badly but, I just kept the head down and kept going
“They did their best and while I improved slightly, there was a lot of damage to the nerves by that stage. I had gone into hospital on a stick and I came out on two crutches.”
Eddie then tried to get back to normal, doing as much work as he could.
“I was suffering quite badly but, I just kept the head down and kept going. I was on no medication at that time except an odd painkiller when things got out of hand.”
Life became more difficult for Eddie when he had a car accident in 2017, however. He has no recollection of how it happened.
“I was just driving to the shop and I veered into a wall and was badly smashed up.”
That meant more long stays in hospital.
A lot of doctors don’t recognise it. It’s frustrating, because they’re not listening really
“I was in a right mess then, but again, we tried to just get on with it,” he says.
Life was complicated further when Eddie was diagnosed with epilepsy.
“Majella was bringing our son, Lucca, to school and I said I’d go for the spin,” he says.
“I was standing at the door of the car and the next thing I can remember was an ambulance parked beside me. I had blacked out. In hindsight, a seizure could also have caused the accident. I’ve always felt, though, that the epilepsy has something to do with the Lyme disease because I had none of those issues beforehand.”
Eddie’s land and sheds are now set to a dairy farmer and while activity is limited, he still runs the contracting business and concentrates on doing repairs.
“It’s something I always had a good knowledge of. The day’d be long looking out the window if you’d nothing to do,” he says.
Eddie finds being a member of Tick Talk helpful, but considers treatment for Lyme disease in Ireland to be poor.
“A lot of doctors don’t recognise it. It’s frustrating,” he says, “because they’re not listening really.”
His advice to readers is to get a good test if experiencing symptoms and he is particularly appreciative of the support he has had from his wife Majella, son Lucca (13) and his many friends and neighbours since becoming ill.
“I would like to thank them all for their help and patience and understanding,” he says.
Why is Lyme disease more common now?
How ticks latch on
Ticks climb onto grass stems and heather and wait for a passing animal – a possible “host”. They are attracted to CO2 – carbon dioxide – from the breath and body of an animal or human and grab the opportunity to cling to any skin or fur they come in contact with.
The tick needs a blood feed to survive, so it secretes an anaesthetic into your skin so that you may not know you’ve been bitten. A tick could attach, say, behind a person’s knee, feed for several days and then drop off without the victim being aware they’d been bitten.
About 20% of the ticks on a farm or surrounding countryside will carry Borrelia bacteria (the infective agent that causes Lyme).
Tips when outdoors:
Tips for when you get home from the woods:
Ways to reduce the tick popultation
The following measures can help to reduce the tick population without the use of insecticides:
Tick Talk Ireland provides awareness and support for Lyme disease in Ireland. Visit www.ticktalkireland.org to learn more about Lyme disease prevention, diagnosis and treatment.