Ms Tracy Brennan:

I am very grateful that the committee has taken on board the seriousness of Lyme disease in Ireland and that I have the opportunity to make this presentation to it. I am 39 years old and I live in Dublin with my husband and our three small children. In August 2011, three weeks after my youngest daughter was born, I developed an ear infection. Over the next six weeks, I had three such infections. I was extremely weak and had a dreadful feeling I would just collapse. Over the next 12 months, the weakness continued and I suffered daily from a multitude of symptoms. The complete list of symptoms is simply too long to read out and the most important ones are included in my longer submission document.

The worst symptoms were: burning pain in all of my muscles, where climbing stairs was near impossible; pain in all of my joints and, in particular, sacral joint pain which meant walking was often very painful; and relentless, excruciating inner and outer ear pain.

For months I attended ear, nose and throat, ENT, clinics in Beaumont hospital on a weekly basis and was frequently at accident and emergency in the Royal Victoria Eye and Ear Hospital. I saw more than nine different ENT doctors. Steroid ointment was being put in, then taken out and put back in. Sometimes I got relief and other times it was all pointless. I was referred to a pain management specialist who prescribed nerve pain medication which did not help. It was endless pain for months and I was so frustrated that we could not get to the bottom of the problem. My ENT consultant was so baffled as to why I was not responding to treatment that he arranged for a second opinion for me. I also had regular chest infections, bouts of 'flu, episodes of streptococcal throat and kidney infections. I was constantly at my GP's practice or at the VHI SwiftCare clinics late at night needing antibiotics for the latest dose that came at me.

Managing the aforementioned symptoms and ongoing physical weakness on a daily basis was an enormous challenge. Imagine trying to hold and feed a newborn infant while battling a feeling that your legs were about to give from under you, with two other small children, aged four and two, at your feet. As a family we required enormous levels of help from grandparents in order to function. The number of hospitals and clinics I had to attend was starting to increase. These appointments were starting to exhaust me physically and mentally and left me wondering who could I turn to. In total, I attended 11 hospitals and clinics in Ireland as a public and private patient, some on a very regular basis, looking for answers. My medical bills in Ireland started to eat in to our savings but we had no answers to show for the money we were spending.

In the summer of 2012, I was very lucky to be seen by an Irish GP who had spent 30 years working in the US and he recognised the symptoms of Lyme disease. He referred me for an appointment with an infectious diseases consultant in Ireland who sent my blood to the UK. The results from an ELISA test were negative and I was told I did not have Lyme disease and to go back to my GP. With the support of the GP I learned of the Borreliose Centrum in Augsburg, BCA, Germany. I had spent five years living in Frankfurt in my 20s and I felt very comfortable travelling to Germany for treatment as I am very familiar with the quality of their medical work and their approach to patients. My blood tests for Lyme disease through BCA returned positive results. It was such a breakthrough for my whole family that at last we knew why I was so unwell and why I was in so much pain. There was immense hope for my future.

I then travelled to Augsburg in Germany. For two hours a German Lyme disease specialist talked to me about all of my symptoms from my ears down to my toes. We discussed all of my possible exposure to ticks. Although we will never know when I was infected, it is highly likely it was when I was living in Montauk on Long Island in the US on a Jl student visa, as I lived in a wooden chalet surrounded by deer. We were shown ticks and told to be careful. Unfortunately, I never developed the classic bull's eye rash. The borrelia bacteria that causes Lyme disease can lie dormant in a patient's body for months or years and only become active when the patient has become immune suppressed. For me, the immune system suppression of pregnancy gave the dormant borrelia a chance to take over.

I started my treatment in October 2012 with two weeks in Germany having intravenous antibiotics. Thereafter, I had 16 weeks of intravenous antibiotic treatment with a VHI Homecare team who looked after me so well in my own home. I never thought I would ever have to call on such a service but I did. I am so thankful it was available to me as it was excellent and played a pivotal role in my recovery. Treatment brought such relief. Within weeks my ear pain lifted and this gave me a glimpse of what life could be like. The neurological symptomslike noise and smell sensitivities also quickly disappeared. So that members can really understand the difference this treatment has made to my life, I will draw comparisons between October last year and this year. Last year, I needed a carer with me and a wheelchair for the walk through Dublin Airport for my flight to Germany. This October I flew to Gatwick by myself for a conference. My life is now filling up with social events that simply were not possible for me before treatment.

My treatment for Lyme disease through BCA has restored my health and my life, which had been completely shattered for almost two years by this awful debilitating disease. The money spent has been the best money I or my family have ever spent. One of the best moments on this journey was going to see my ENT consultant. I handed him my German results and he fell back in to his chair. "Lyme disease, I had never even thought of it", he exclaimed. He was delighted for me as we now had the answer to the ear pain. He congratulated me on persisting and getting to the bottom of my ill health, but most importantly for getting to the bottom of it all in only one year. His own brother, a doctor in the US, had also had Lyme disease, but it took him two years to get his diagnosis.

I am now in contact with over 20 Irish people who are travelling to Germany for treatment, some of whom have had a much worse experience than me. The system here is delivering for some but not for others. That is why I ask that this committee continues its engagement with us, as patients, in order to improve the lives of those who struggle with this relatively new and complicated disease. As Annette mentioned, engaging with the HSE would be an excellent start. A rapporteur to look at Lyme disease across the country, taking into account increased travel over the last number cf years, and a Lyme disease task group in Ireland could mean fewer people having to endure the experience I had.