Ms Lisa Vandegrift Davala:

First of all we have to talk about the vilification of patients. It is something that came up in one of the questions, the horror of being told by a physician or a consultant that one must be making it up. Unfortunately, this is a scenario that happens too frequently. I have been loth to talk too much about my personal situation but in view of the questions this morning, it is compelling that I say something. Two and a half years ago I attended a top hospital in Dublin with the two top neurologists. One turned to my husband and said, "I think you ought to consider a psychiatric evaluation for your wife". I sat in the wheelchair, having failed numerous neurological tests, yet what we were being told to do was to go the psychiatric route. What happens when a disease is vilified and is not given sanction? If I told somebody I had Parkinson's disease or if I said that to friends, family and community, there would be a collective "ah" and support would be given immediately. It is a disease and a name - warm and fuzzy - and lots of support is provided. When one says one has Lyme disease, one can hear the crickets twitter and people look at one. There is not the sense of "we know what to do, we know you have a disease for which nothing can be done, so we will surround you and take care you and one should not worry about a thing".

Too often the situation for Lyme patients is that once they receive the diagnosis, and they have had to work very hard to do so, even their own families can reject. It is such a horrifying situation to know that one's own Government's health system and most of the doctors in it do not recognise the thing for which one is now being treated successfully. I would argue that whatever controversies there are with the idea of chronic Lyme disease or the diagnosis using the ELISA, we are three of thousands in this country with this disease. Without the treatment we have received I doubt that any of us would be able to lift our heads up to a microphone this morning. At least two of us have been in a wheelchair within recent years. We would welcome evidence based and peer reviewed work on this and surely that will come, but we are the canaries in the coalmine. As with H. pylori and as with ADHD, I take that point very seriously: do not shoot the messenger.

As far as a long-term illness scheme is concerned, I would love to hear about that. I know Senator Marie Moloney spoke about something similar in the Seanad debate in 2012. I am destitute financially as a result of this. I have spent well over €200,000. In terms of insurance coverage, Aviva was good enough to cover much of my testing in the initial phases of my treatment.

However, some of the treatment is so new that the substances and treatment could not be covered.