Sinead Ryan is a 28-year-old farmer’s daughter from Borris in Co Carlow.

She was diagnosed with Lyme disease a year ago. She is not sure when she was bitten by an infected tick but she believes that she has had Lyme disease for a long time.

Getting a diagnosis was difficult, however, adding to the stress of the illness that can have initial flu-like symptoms followed by fatigue, recurrent infections, and muscle and joint pain to name just a few.

“We can’t really pinpoint a time when I was infected with Lyme disease,” she says, “but ticks can be anywhere – in old pasture as well as woodland. Lyme disease is not just something that timber workers in the US get but most people don’t know that. It’s crazy the lack of awareness about Lyme. I know several young people diagnosed with it in the southeast.”

From the age of 18 or 19, Sinead was having constant eye, ear and throat infections but she also became very ill while working in Australia when she was 23.

“Because of my high temperature, doctors queried dengue fever and other viruses. They were able to say that there was something in my blood but they didn’t know what.”

She subsequently continued to find it difficult to get over any infections she picked up and in October 2015, back home and working in a creche, she felt very tired.

“I’d never experienced anything like the fatigue,” she says. “My hands went numb at night too and my memory and concentration just weren’t what they were.”

After feeling dizzy at work one day, she attended her nearest A&E.

“Lots of blood tests were done. They said it was some kind of virus but I felt that there was also the suggestion that it was all in my head. I left the hospital in tears. ME or chronic fatigue syndrome were mentioned so I googled the Irish ME site to find out more about it. It was then I saw a link to the Tick Talk website and mention of Lyme disease and the symptoms you can have.”

In 2016, Sinead attended a Tick Talk conference where she had comprehensive blood tests done.

“It’s a German test that checks for Lyme co-infections also,” she says.

The results showed Lyme Borrelia as well as the co-infections ehrlichiosis and anaplasmosis.

A consultation with infectious diseases specialist Dr John Lambert at the Mater Hospital followed, which confirmed the diagnosis.

RELIEF TO BE DIAGNOSED

Being diagnosed was a relief to Sinead after having had no answers for so long.

“I knew I hadn’t been imagining anything,” she says.

Sinead works in the social care sector now and rests a lot between work times.

“I am careful. If I get really tired I get bad pains in my joints and arms and legs and feel light headed, so I have to pace myself.”

AWARENESS INCREASING

Sinead is glad she was diagnosed when she was.

“At conferences you see people with walking sticks and in wheelchairs and it scares you. I’m really lucky that it was caught fairly early. You can fight it if you get it early. I say to people, if you see a tick and remove it then you need to go to your GP.”

infectious disease specialist

Dr John Lambert is an infectious disease specialist based in the Mater Hospital, Dublin. He saw many cases of Lyme while working in the US, but has been treating cases of the disease in Ireland since 2014.

DIAGNOSIS, REPORTING, TREATMENT

& EDUCATION CHALLENGES

Getting a diagnosis of Lyme can be difficult, he says.

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

A further complicating factor is that ticks inoculate victims with other bacteria apart from Lyme disease.

“There are co-infections, Lyme-like bacteria that cause similar symptoms. We need to be aware of these co-infections. 25% of the people I have seen have an antibody to anaplasma – a rickettsiae infection that’s caused by a tick bite.”

LYME TESTS NEED TO BE REDONE

Testing too soon after a tick bite may mean a negative Lyme or co-infection test also.

“If you do the test in the first month, you have to redo 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 NEEDED

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

“At present, patients with Lyme are presenting to different specialists with different 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 the medical profession 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.”

GPS RELUCTANT TO GIVE THE

NECESSARY COURSE OF ANTIBIOTICS

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 but GPs won’t treat for more than two weeks for Lyme. 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- PRONGED APPROACH

NEEDED TO TREAT LYME

Three kinds of treatment are needed to treat 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.

Three years ago, he wouldn’t have considered herbal therapy as part of this immune system support beneficial but he has changed his mind.

“I became a reluctant believer,” he says. “There is good data out there on some of the alternative herbal therapies and I reconsidered after seeing patients ‘turn the corner’ after using these along with what I’d prescribed. Some alternative therapies are too way out, however, and I’m still not on board with those.” CL