Raising the public profile of tiny, potential killer
Tick-borne Lyme disease does not have a high public profile in Ireland but the potential killer is more prevalent than people realise, writes Valerie Robinson
THE Irish tend to believe they are only exposed to insect-borne diseases when travelling abroad but a bite from a native tick could have life-long consequences.
The tiny arachnids, often found on deer and sheep, are the most common carriers of Lyme disease or borreliosis, which is caused by the Borrelia Burgdorferi bacterium. There is no vaccine available here and sufferers believe that unreliable testing methods mean many cases go unconfirmed.
According to the Public Health Authority (PHA) there have been fewer than 10 cases in Northern Ireland in the past five years. Campaigners believe the number of people infected annually could be up to three times that, although a spokeswoman for the Belfast Health and Social Care Trust says that with "current evidence" it is difficult to know how many undiagnosed cases there are.
Dr Eoin Healy of the School of Biology at University College Cork, says there are about 250 confirmed new cases in the Republic every year but warns that a "significant" number remain undiagnosed or misdiagnosed.
The US Centers for Disease Control and Prevention has revealed that 300,000 Americans are diagnosed every year - 10 times more than previously thought.
Belfast man James Maguire says he struggled for years with illness before eventually being told by a Californian laboratory that he had Lyme disease.
The construction worker lived in the US from 1994 but after returning to the north a decade ago he developed Bell's palsy (facial paralysis).
When he went back stateside, Mr Maguire suffered severe leg and stomach pain. He also developed a heart arrhythmia and memory loss. He returned home permanently in 2009 and was told by doctors that he had tested negative for Lyme disease. He later learned that false negatives were common - some studies indicate that up to half of people falsely test negative.
Lyme disease can be difficult to pinpoint because people often do not realise they have been bitten by a tick.
It is thought to take a minimum of 12 hours for an infected tick to transmit the bacterium but the minute creatures tend to conceal themselves behind knees, in armpits, hair and the crotch. After filling up on blood they drop off undetected after about four days. Campaigners believe that false negatives can be caused by antibiotics, anti-inflammatory drugs or the body's failure to produce antibodies.
Lyme disease is known as the "great imitator" because it is often misdiagnosed as other conditions including chronic fatigue syndrome and ME.
In the first weeks after a tick bite a red circle resembling a bull's-eye target may appear, sometimes accompanied by flu-like symptoms.
However, some people skip stage one, developing stage two symptoms within months or years. An oral antibiotic can help tackle the disease if it is diagnosed early. If Lyme disease remains undiagnosed a late-stage sufferer might experience tremors, nerve pain, depression, panic attacks, tissue damage, meningitis and chronic arthritis, among others.
Mr Maguire's tests are now conducted by a German laboratory and he is under the care of a US specialist.
He believes the authorities in Northern Ireland are not doing enough to warn people about the danger ticks may pose to their long-term health.
In 2005 a second Belfast man, Jason McCullough, found an engorged tick on his bathroom floor. He later developed chronic eye problems and palpitations.
Again he tested negative in Northern Ireland until he resorted to US and German laboratories that confirmed he had Lyme disease. He is due to travel to Washington in November to see a specialist.
Mr McCullough believes that doctors who specialise in Lyme disease are required in the north, rather than relying on the Infectious Diseases Service that is based at the Royal Victoria Hospital in Belfast.
He says sufferers can feel isolated and frustrated because of a lack of awareness of their illness. "The problem is that Lyme disease is like cancer. If you don't treat it then it gets worse. What people must know is that a negative test doesn't mean they don't have the disease," he says.
Tick Talk Ireland was co-founded in 2009 by Jenny O'Dea. There is no such support group north of the border.
"I feel like there's light at the end of the tunnel for me now but I'm really convinced that more people have Lyme disease in Northern Ireland than we think, and they are not receiving the treatment they need," James Maguire says.
To anyone worried they might have symptoms his advice is simple: "Be persistent. People need to be made more aware of Lyme disease in this society."
Dr Michael Devine, PHA health protection consultant, warns that late spring through autumn are peak times for tick bites and that the best defence against Lyme disease is to avoid being bitten.
He advises people spending time outdoors in warm weather to wear long sleeves and tuck trousers into socks, use repellent and, most importantly, do a thorough check after returning indoors.
For more information on Lyme disease in Ireland visit www.ticktalkireland.org