Jennifer O’Beirne from Strokestown in Co Roscommon was diagnosed with chronic Lyme disease six years ago, in 2018, but that was after losing her 20s to the illness.

“Lyme robs you of so many things,” says Jennifer (37). “All those years, in your 20s, that are meant to be fun and exciting and carefree – I lost all those. Instead, I spent those years fighting for referrals, feeling like I was dying, hoping someone could tell me what was wrong with me. I must have seen 50 doctors before I got a diagnosis.”

Lyme disease is a bacterial infection caused by ticks which can be picked up in woodland or old pasture and also in urban areas and parks. It is a multi-systemic disease so, at chronic stage, it can affect any part of your body. If not treated quickly, long-term symptoms include fatigue, muscle and joint pain. It can also cause balance, heart, sleep, memory and concentration issues along with neurological problems.

“I’ve no recollection of being bitten by a tick as a child,” says Jennifer, “but growing up in a farming family I was aware of them. My doctors believe I was probably infected in childhood. I know now that most people with chronic Lyme disease don’t remember a tick or a rash.”

Jennifer is unable to work because of her illness.

“I’m not well enough unfortunately but I am working very hard on my treatment and although I have recovered a certain amount in the six years, life is still uncertain for me now,” she says.

“With chronic Lyme, you don’t know what a day is going to look like and you definitely don’t know what next week is going to look like. It’s very unpredictable.”

Memorable day

Jennifer remembers very clearly the day she got her diagnosis of Lyme disease from infectious diseases specialist Professor John Lambert in the Mater Hospital.

“After I came out I sat on the steps of a building down the road and just felt relief that I was believed,” she says.

“It’s not an illness anyone would want but it was a relief to have answers as to why I was ill because all through my 20s I was treated like I was making it up, that it was ‘all in my head’, that I was lazy or a choice that I was making.”

Getting the diagnosis in 2018, Jennifer also felt validated in her own judgment that something was attacking her immune system.

“I knew I was genuinely ill, that they were missing something,” she says. “I was lucky that my mental health was resilient, that I had that strong trust and believe in myself. I knew that even when I was doubted, I could rely on my own judgment and intuition.”

Started in college years

In hindsight, Jennifer believes that Lyme disease first became active in her body when she was busy enjoying university life and studying for her finals.

“I had what I now know as cognitive, neurological type symptoms. I was missing deadlines, studying but not making progress and leaving the house to go to lectures but sometimes not getting there. It felt like my brain was on fire but I couldn’t voice what was happening.

“College health services put it down to stress, burnout and anxiety. That failed me in a way from the start as they fully labelled it as being in my head and it wasn’t.”

Jennifer couldn’t continue her studies that year due to what she knows now were Lyme disease symptoms of brain fog and neurological fatigue. It was three years later before she went back to finish her course.

“I can remember the Friday it happened,” she says. “It was the worst sore throat I ever had, times a million. I had headache, neck pain, swollen glands and flu symptoms but was given standard treatment by my GP – it just kept getting worse. I sat exams with heat packs and pain gels all over my body. Looking back, my diagnosis was missed at every turn.”

The treadmill of consultant appointments followed with her GP referring her to every specialty – endocrinology, immunology, neurology, rheumatology, ENT and more.

She had a throat operation early on in the hopes that this might help but she continued to be ill.

Jennifer was tested for Lyme disease when the physical symptoms first occurred but it did not show up in those HSE tests. It was only when she heard of Professor John Lambert via a local radio interview that she got answers and a pathway to help.

“I sent him my history and asked his opinion,” she says. “At that point, I didn’t know where to turn. Given my clinical history, it was suggested that I get the private German tests done for tickborne infections.”

Treatment

After diagnosis Jennifer was treated with a combination of antibiotics and also immune-modulating medication.

“I was also prescribed various other treatments to balance my immune system, including supplement and herbal treatments but I still have a long way to go. My case is quite complex and my immune system is now very low and I’ve been catching every seasonal thing that’s going too which has impacted my treatment.”

Tick Talk Ireland

Jennifer was relieved to find Tick Talk Ireland, the awareness and support organisation that she now volunteers with.

“It’s all voluntary to increase awareness of the disease and to seek recognition for chronic Lyme disease,” says Jennifer. “Doctors don’t get enough training in it even though Lyme is the fastest growing vector-borne disease in Northern Europe and worldwide.

“There is more awareness of acute Lyme in other countries but in Ireland the public is told it’s rare. We need tick safety signs in public areas nationwide.”

Jennifer hopes that she will soon have a better quality of life.

“My hope is to get to remission stage, that symptoms will be less debilitating and that more days will be about living and not just about trying to survive. You have to keep your hope and working towards healing.”

Doctor’s viewpoint

Professor John-Lambert.

Professor John Lambert is an infectious disease specialist based in the Mater Hospital and UCD School of Medicine, Dublin. He saw many cases of Lyme while working in the US and has been treating it in Ireland since 2014.

Getting a diagnosis can be difficult, he told Irish Country Living in an interview about Lyme disease.

“If you go to a GP with a rash, the last thing on their mind is a tick bite,” he says. “They often aren’t trained to know what Lyme looks like. Another complication is that half the people who get Lyme disease don’t have the distinctive bull’s eye rash.”

Testing too soon after a tick bite may result in a negative Lyme or co-infection test also. “If you do the test in the first month, you have to re-do it a month later to be sure. A positive test is helpful but a negative test doesn’t rule out infection – it’s important for patients and doctors to know that.”

More ‘joined up thinking’ is needed by health professionals, he believes.

“At present, patients with Lyme are presenting to different specialists with varying health problems. If you’re bitten by a Lyme-infected tick, it inoculates you through your skin, circulates to your blood stream and goes into every tissue in your body so you can have many health issues.

“We need more concerted energy from the Government and medical professions to put more time, energy and resources into studying Lyme disease. People can be cured. The outcome for untreated misdiagnosis, on the other hand, is miserable for the patient.”

Dr Lambert finds it frustrating, however, that GPs won’t give the required course of antibiotics to Lyme patients, when they are diagnosed.

“If you have acne, your dermatologist will put you on the same antibiotics for a year that are used to cure Lyme disease but GPs won’t treat for more than two weeks. The consequences of untreated Lyme disease are far worse than the cosmetic and psychological consequences of untreated acne. Lyme disease seems to be a political hot potato and everyone is hugely rigid around treatment stances.”

“Three kinds of treatment are needed for Lyme disease and co-infections of it – antibiotics, anti-inflammatory medication and immune system support therapy, if the disease has gone to a chronic stage,” he says.

He also includes some herbal treatments now, having seen patients “turn the corner” after using them along with what he prescribed.

In short

• The HSE and the Health Protection Surveillance Centre (HPSC) issued a joint press release on 1 May – Tick Awareness Day – advising Irish people to be tick aware in order to keep safe from Lyme disease

• Lyme disease is believed to have become more prevalent in Ireland because of the growth in red and Sika deer populations. Allied to this is climate change causing warmer weather, reforestation, increase in the amount of rough-grazing area in Ireland and part-time farming

• The HSE estimates that up to 400 people are infected with Lyme disease each year in Ireland but a figure as high as 2,500 has also been suggested in medical circles.

Tick Talk Ireland

Tick Talk Ireland – ticktalkireland.org – has this advice for preventing tick bites:

Wear long sleeved T-shirts and trousers when out and tuck into socks

Wear light-coloured clothing to make any attached ticks easier to spot

Check yourself and children every couple of hours for attached ticks

Apply insect repellent with 20%-30% DEET to any exposed skin

You can also apply Permethrin to clothing (do not apply directly to skin) which can be bought in camping or hunting shops

Avoid wooded areas with tall grass

Once home, check your entire body for ticks.

Remember, removing the tick correctly is very important to avoid infection.