I thank the committee for the opportunity to be here today. I am a Lyme disease patient from Limerick. I am here to offer my own patient experience and also to give the committee a perspective on behalf of a number of patients who are experiencing difficulties in the diagnosis and treatment of Lyme disease in Ireland. Lyme disease is like the escape artist of diseases. It is very difficult to find, even in blood tests. Lyme disease is complicated for doctors to diagnose and is often misdiagnosed and under-diagnosed. For patients, it is a painful and debilitating disease and it also presents a serious public safety issue in Ireland. Lyme disease has more than 100 varied symptoms, including muscle and joint pain, back pain, headaches, muscle twitches, breathing difficulties and heart problems, and can at times result in paralysis and loss of sight. For patients, the disease can feel like an intense mixture of a bad flu, severe arthritis and exhaustion but what differs is that symptoms can last for months or years. In some cases, children are born with the disease. The longer it is left untreated, the more damage Lyme disease can do.
I would like to begin by giving the committee my personal experience of Lyme disease. In July 2012 I got a tiny tick bite. While I would like to be able to tell the committee this happened in a far-off tropical location, it did not. It happened to me at home in Pallasgreen, County Limerick. I found the tick attached and removed it carefully but within three weeks I started to experience what I now know are typical acute Lyme disease symptoms. I went to my general practitioner and had a range of tests carried out in Ireland, which all came back negative. Looking back, one could say I was lucky that I found the tick bite and I was able to connect it to the fact that I became ill quite quickly. I also knew of the dangers of tick bites. Although I had a strong suspicion what was going on, Lyme disease was repeatedly ruled out by doctors. In February 2013, I had specialist testing carried out in Germany, which confirmed that I had Lyme disease plus two co-infections.
In some ways, my story is an example of how complicated and fast acting the Lyme disease bacteria can be. Before the tick bite, I was a keen amateur runner. I was a voluntary coaching assistant with two athletics clubs in Limerick where I encouraged others to take up leisure running as a way to improve their health and well-being. A month before the tick bite, I had won four medals at the Limerick county track and field championships, which to me was as good as, if not better than, winning Olympic gold. I used to run approximately 20 to 25 miles a week and led an active, healthy lifestyle. Within three weeks of the tick bite, I could not run at all and I have not been able to return to running since but, in many ways, that is the least of my worries.
Apart from dealing with the disease itself, patients often face real challenges in the diagnosis and treatment of Lyme disease in Ireland. There are a growing number of patients who have tested negative for Lyme disease in Ireland who have subsequently tested positive through a specialist doctor or laboratory, for example, in Germany, Switzerland, Belgium or the USA.
Unfortunately, patient experience shows that some Irish hospital-based consultants refuse to acknowledge a diagnosis from a specialist Lyme disease doctor or laboratory from another country. Without the support and expertise of these consultants, the Irish medical system finds it difficult, if not impossible, to help patients to deal with the disease. This affects patients in a number of ways. They are denied a diagnosis for a debilitating condition. They have to find the money to travel to other EU states or countries to access treatment and, ultimately, their lives are at risk.
While it is important to note that some patients who happen to test positive in Ireland, thankfully, get treatment but medical approaches vary considerably. In preparing for today's meeting, Ms Brennan and I initially contacted 25 Lyme disease patients experiencing difficulties in accessing treatment in Ireland. This number has since grown to more than 100 people - men and women from a range of ages, including young children, and from almost every county. Information and a range of patient profiles was included in the longer submission sent to the committee in advance of today's meeting.
Apart from these personal impacts, Lyme disease is also a serious public safety issue in Ireland. By denying a specialist diagnosis of Lyme disease, patients are often tested for a range of other conditions, involving further blood tests, scans and referrals to other hospital consultants, leading to huge costs for the HSE or else paid for privately by patients. Furthermore, there is evidence that Lyme disease can be transmitted sexually, congenitally from mother to baby and through blood donations. The Irish Health Protection Surveillance Centre's disease surveillance report of April 2013 is of note here. It states: "surveys of blood donors indicate significant levels of sero-positivity in certain parts of the country (particularly in the West of Ireland): this suggests that a figure of 50 Lyme Borreliosis cases countrywide per annum could be a considerable underestimate."
As patients, we are concerned that there is dangerous lack of accountability and governance with regard to the comprehensive diagnosis and treatment of Lyme disease in Ireland. There is an urgent need to increase levels of awareness among the general public on the dangers of tick bites. Prevention and early intervention improves a patient's chance of recovery.
What needs to happen next? As patients and citizens, we recommend a number of positive steps, some of which can be developed in partnership with the HSE. The issue of Lyme disease should be addressed by the HSE at its next meeting with the committee. The committee should appoint a rapporteur to carry out a detailed examination and report on the situation in regard to Lyme disease in Ireland and for patient representatives to be consulted as part of this process. Patients feel there is a need for the HSE to establish a Lyme disease task group. This group should include a range of expertise, including infectious diseases consultants, GPs, international Lyme disease experts and patient representatives. It should also consult a number of other experts relating to patient symptoms, including chronic pain specialists, neurologists, rheumatologists, paediatricians, obstetricians, etc. As patients, we are aware that Lyme disease is a very complicated illness. We can understand that for doctors at all levels it also presents challenging and confusing scenarios where patients can present with a multitude of symptoms, in a variety of places, over a long period of time.
We, as patients, feel the diagnosis and treatment of Lyme disease in Ireland needs to be more patient-centred and more evidence-based. Ireland has a real opportunity to work with up-to-date international best practice to improve this situation for patients aid the public. Lyme disease is very much an orphan illness. It is a minority illness and is not socially understood. Patients with complex cases of the disease know that if they want to return to health, they must rely on international expertise. While it could be said that Lyme disease is not overly prevalent in Ireland currently, due to increased travel by the population, this situation may change in the future and, from patient experience, we are also seeing more cases being contracted at home. Furthermore, because so many patients are misdiagnosed with other illnesses, it is also impossible to say how many actual Lyme disease patients there are. We do understand it is a relatively new disease within the Irish medical system and, as patients, we are encouraged by the leadership shown by joint committee in discussing this issue today. We hope this issue will form part of further dialogue with the committee, the HSE and the Department of Health and are keen to be part of that positive development. Again, we thank the committee for the opportunity to be here today.