Brave Kilcock mum battling Lyme Disease calls on people to take precautions when doing outdoor activities this bank holiday weekend

By Kim O'Leary

A group of Kildare advocates who suffer from Lyme Disease have appealed for the HSE to introduce better treatment and testing options for those who have the disease, with many sufferers forced to travel abroad to receive treatment.

Earlier this week the group were at Leinster House to ask the Minister for Health Simon Harris and the HSE to consider introducing better testing and medication for Irish Lyme Disease sufferers.

The campaign was started by brave mother-of-one Susan O’Brien (34) who is from Kilcock. Susan was diagnosed with Lyme Disease over four years ago and the first symptom that she had the debilitating disease was a rash on her skin. Lyme Disease is an infectious disease transferred to humans by the bite of an infected tick, with the symptoms consisting of redness at the site of a tick bite, fever, headache, fatigue and muscle pain and later complications can include facial nerve paralysis.

It is understood that the usual onset of symptoms can occur as late as a week after the initial bite, and it is currently very difficult to properly diagnose the condition due to it sharing similar symptoms with the flu and other illnesses. It is estimated that there are between 50 and 100 cases in Ireland each year and the ticks that cause Lyme disease are commonly found in woodland and heathland areas. This is because these types of habitats have a high number of tick-carrying animals, such as deer, mice and sheep. Due to their breeding patterns, the tick population is highest in late spring and early summer.

Ticks can also be found in rural areas in many other countries, including: Ireland, UK, France, Germany, USA, Austria, Sweden and Russia.

Speaking to KildareNow, Susan explained that she had never even heard of Lyme Disease before her diagnosis. “It started out as a red rash on my skin, I couldn’t even tell you the exact location or when I got the tick bite, it could have been anywhere in Ireland or even abroad, as my family and I really enjoyed doing lots of outside activities such as walks in local forests. I just remember over a week later being out for a bike ride with my son and having this pain in the back of my head; so I told my family that I was going for a lie down but the pain in my head was getting worse. The next morning I woke up and the left side of my face was tingling, my eye had drooped and I just didn’t feel right,” explained Susan.

As her condition worsened, Susan was rushed to hospital for treatment for her chronic pain. She said: “The Doctors didn't know what was wrong with me. I had so many scans, blood tests, MRI's and two spinal taps for doctors to find out what was wrong. Then I was given the news that I have Lyme Disease; I’d never even heard of it before, I had to learn about it the way most Irish people do by Googling it. I attended St James Hospital where I was put on the 4-week treatment. This didn't work and on my last visit I was told nothing more could be done for me and that I was just going to have to live with it.”

However, Susan was determined to try to improve her condition for her family’s sake so she found a doctor at the Mater Private Hospital, who placed her on strong antibiotics. Unfortunately, after several months on the antibiotics it became apparent to Susan that she wasn’t feeling any better, and her doctor then recommended she try Lyme treatment in Germany. Last year with her family and friends through local fundraising events, Susan succeeded in raising an astonishing €20,000 so that she and her mother could fly to the clinic in Germany in treatment.

Susan explained: “My mam went with me to the St. George’s clinic in Germany, she was so great she’s my rock, my entire family have been amazing. At the clinic I underwent 2 Hyperthermia treatment, IV Antibiotics and IV intravenous nutrient therapy, Ion Cleanse treatment, Chelation therapy, Ozone therapy, diet and Nutrition. I was put inside this tent and you couldn’t even see me in it, no-one could come into me when I was in the tent. Now, it’s been seven months since the treatments and I’m doing much better, but the thing is that it could flare up again anytime.”

Meanwhile, Susan was joined at the recent rally outside Leinster House by other Kildare sufferers and Fianna Fail TD for Kildare North Frank O’Rourke. The group is also hoping to raise awareness about the condition as May is Lyme Disease awareness month.

Speaking about the campaign, Susan explained: “There’s not enough awareness about Lyme Disease, we need better testing and treatments. No-one really knows what it is besides what celebrities like Avril Lavigne and the Hadids have said about it, anyone can get it. We are also looking for signage to be placed at large outdoor events like concerts and shows to warn people, and to appeal to the HSE to get better testing procedures and medication.”

Deputy O’Rourke has been involved with the Kildare group for the last 18 months, and he is urging the HSE to provide sufferers with more options for treatment at home in Ireland. “It’s a serious condition that Kildare people need to be aware of, a tick bite that is not properly treated can have severe consequences. The HSE should be doing more in terms of treatment, Susan and many others have had to leave Ireland for treatment, and there’s also insufficent funding for researching the condition,” said Deputy O’Rourke.

[caption id="attachment_223545" align="alignnone" width="300"] Deputy Frank O'Rourke and Susan O'Brien with other Lyme Disease campaigners outside Leinster House[/caption]

As Met Eireann predicts a warm bank holiday weekend, Susan has this advice for those taking part in outdoor activities this weekend: “Be aware when you’re in possible tick-infested places like forests, use insect repellent, check your skin for ticks at the end of the day especially your head, neck, under arms. If you do find one use fine-toothed tweezers to remove it. Lyme Disease has taken four years of my life; don’t let it do the same to you.”

For more information and advice visit

https://www.hse.ie/eng/health/az/l/lyme-disease/preventing-lyme-disease.html

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