Ms Annette Moloney:

In my experience, some infectious disease consultants have a broad range of experience, but perhaps they do not have specialist experience in the area of Lyme disease. They may not have had the positive experience other clinicians have had of seeing somebody come through a long treatment with a positive outcome. There are complications around the fact that one of the long-term treatments for Lyme disease is long-term antibiotics. Almost everything else in the health system tells us that the over-prescription of antibiotics is a big problem. We then say that we have done our research and would like to request long-term antibiotic treatment, or in some cases IV antibiotic treatment, but this is blocked.

There are also scenarios where when that knowledge and further referrals are not available, patients are told they will be referred to a rheumatologist for this other condition and that they should take a course of steroids in the meantime. Giving steroids is like giving Red Bull to a patient with Lyme disease. They will increase the level of the infection hidden in the person's connective tissues throughout the person's system. In my case, I believe the fact I was fit and healthy in my early 40s meant the Lyme disease had a better chance of getting access to my connective tissues. Looking back, this was unfortunate. Also, due to the psychiatric aspect of the disease, some patients have been recommended anti-depressants.

Some members have asked about the Western Blot test and the ELISA test. I failed both of those tests here, but my tests came up positive in Germany. There is a conundrum there in terms of international expertise. Lyme disease is a notifiable disease, but neither of the two GPs I tried to work with here could notify my case of Lyme disease because it was based on an international diagnosis and was blocked by an Irish hospital-based consultant. There is a great will on the part of GPs who see cases of Lyme disease on a regular basis. We had a fantastic GP who was available to meet with us today, but he is in the same predicament in terms of lack of support.

On insurance, I pay a significant amount in family health insurance per year, again because of my treatment being blocked by a hospital-based consultant. I cannot get any support in that regard. In terms of my status, I endured five and a half months of oral antibiotics during the summer. Treatment for Lyme disease often makes symptoms worse. Patients require ongoing ECG tests and liver analysis to ensure their systems can deal with the treatment. I must now be retested in January, and based on my current symptoms, it is quite likely I will need longer term treatment, which could involve travelling to Germany for IV treatment.

We are keen to look at the positives. There are opportunities for Ireland to get involved in pharmaceutical research and collaboration in this area. Today is the beginning of that discussion and that is very positive.