Ms Lisa Vandergrift Davala:

I thank the Chairman and the committee for this invitation. During the past two and a half years, I have had a chance to do extensive research in preparation for a documentary on Lyme disease. Some 23 years ago, I contracted the disease and it took 20 years for the diagnosis. We have arrived at an interesting moment in time as regards Lyme disease and tick-borne illnesses in Ireland. Thanks to the joint efforts of patient advocates and this committee, we have seen Lyme disease made a notifiable disease in 2011. Many Irish doctors are now willing to acknowledge the disease, to speak openly about their limited knowledge, to ask questions, to ask for information and educational resources and to suggest that patients give presentations to medical personnel. Lyme disease has been the subject of two Seanad debates, in 2009 and 2012, acknowledging not only the burgeoning problem, but arguing that if resources did not yet exist in Ireland for patients to be diagnosed and treated, they must be given the support to seek help abroad. Ms Jenny O’Dea, who must be credited, co-founded Tick Talk Ireland and its excellent resource ticktalkireland.org. Individual Lyme patients, through enormously supportive friendships, create the largest resource of all, by offering telephone and Skype support to each other during the harrowing effects of the disease and referrals to foreign testing and clinics. A virtual underground railway has criss-crossed Ireland and most parts of the world. We now have the beginning of recognition, of awareness, and of a willingness to have dialogue and to collaborate for progress.

Equally, we must acknowledge the difficulty that foreign-tested, sero-positive and clinically diagnosed Lyme patients are having in ensuring their diagnoses by world-leading experts will be upheld when they return home to Ireland. Difficulties also arise in having their disability status recognised or in being listed as having a notifiable disease, which needs to be considered when assessing the validity of those figures.

Today, our focus must be to move forward and to contribute to resolving these medical conditions, which can only be denied at great cost to our nation’s health, to the health of our agricultural industries and to Ireland’s financial condition overall. Last month, Britain’s Lady Mary Mar asked attendees of the London Lyme conference what was the cost to the taxpayer of welfare benefits, social care, NHS provision and loss of income tax of maintaining these men, women and children in a state of health that precludes them from working and being active members of society. Recent ESRI studies reveal skyrocketing numbers of children from birth to 19 years of age being diagnosed with MS in Ireland, with as much as 191% increase in a year, while experts, researchers and clinicians around the world have credited the very clear evidence that what we may have assumed were neurological or neurodegenerative diseases are actually patients who test positive for Lyme borrelia, which can resolve with appropriate treatment.

A pathologist, Dr. Alan B. McDonald, has shown that seven out of the ten brain samples taken from diseased Alzheimer’s patients after death were tested from the Harvard Brain Bank and were positive for Lyme DNA. Dr. Dieter Klinghardt revealed that 100% of his neurodegenerative patients have tested positive for Lyme and progress with treatment occurs. Mr. Michael J. Fox, the actor famously diagnosed at a very young age with Parkinson’s, has now been found to have Lyme. A study by neurologists at University College Hospital Galway found that the Republic of Ireland has one of the highest rates of Lyme disease in Europe. According to the World Health Organization, Lyme disease is the world's fastest-spreading infectious disease but we cannot begin to discuss the numbers of infected people in Ireland without broaching the issue of accurate testing and availability of treatment.

We have all been called here today to make a contribution to progress the awareness and treatment of Lyme and tick-borne diseases in Ireland. The Oireachtas is the forum in which to ask bold questions and suggest even bolder solutions. In the spirit of nothing ventured, nothing gained, I ask whether we have an epidemic of neurodegenerative diseases in Ireland or whether it is the ever-growing numbers of tick and vector-borne infections, which have progressed without prior detection and treatment in a country whose natural environment is a perfect habitat for these diseases and where the levels of infected ticks is well documented.

In view of the research and clinical evidence from around the world pointing to the relationship between neurodegenerative diseases and the presence of borreliosis, can Ireland justify financially the expense of what may be needless disability? Would we be willing, with the help of fellow European experts and highly sensitive testing, to test a sample portion of Irish sufferers diagnosed with MS, ALS, Parkinson’s, Alzheimer’s, motor neuron, etc., or to test an anonymous cross-section including these patients? What if this small effort yielded a resoundingly positive correlation that could lead to a progressive way forward? Most importantly, after today, if committee members or their family members were now diagnosed with a neurodegenerative disease, would they not be consulting one of the overseas Lyme literate medical doctors and having their blood accurately tested before accepting a sentence to a wheelchair and a diagnosis, often made without the benefit of any laboratory testing, of having an incurable disease? If we even thought we could help such patients, what would stop us? Why not ensure a future that is not burdened with an ever-growing number of misdiagnosed, neurologically crippled patients who have no choice but to depend on a collapsing social welfare and health system? It makes humane sense and it could also make financial sense.

Our Irish doctors just want to heal people but they need to be trained in this disease and they must be told the truth that Lyme disease is in Ireland and that our only testing method, the enzyme-linked immunosorbent assay, ELISA, which was developed to test for HIV originally, is a seriously flawed remnant from tainted guidelines from the Centers for Disease Control and Prevention, CDC, and the Infectious Disease Society of America, IDSA, on the testing and treatment of Lyme disease that has now been publicly exposed as such through the investigations of Connecticut Attorney General Richard Blumenthal in 2008. It is hoped that upcoming Washington hearings may finally lead to the prosecution of several individuals instrumental in the drafting. Ireland need not have any obligation to use this misleading test, especially as we have excellent testing available now in Europe and the US and very exciting new testing on the near horizon in Europe, which will cost less than our current ELISA to administer and has an almost 100% sensitivity and specificity.

None of the Irish doctors I have spoken to had known that the ELISA test’s own manufacturer’s paper insert, which stays in the lab and is never seen by doctors, states clearly that this test cannot disprove Lyme disease and that a clinical diagnosis must outweigh a negative ELISA. However, it has been the failure to score on the test that has shut Irish Lyme patients out of treatment and forced them abroad. Doctors need to be shown that paper insert as legions of Irish patients' futures depend upon it. Furthermore, it is impossible for late stage Lyme patients to test positive on the ELISA, as we are too immune suppressed. Today, very fortunately, we are honoured to have with us, one of the world’s leading experts on Lyme disease, Dr. Armin Schwarzbach, who is generous with his information.

It took 20 years to get my diagnosis and treatment. By that time, I was unable to walk, I had Bell’s palsy on one side of my face, I had nearly lost my life and almost all of what was in it. I experienced symptoms of dementia and full paralysis. That person, from two and a half years ago, could not have made this presentation. I chose to know the truth rather than to be mothballed in a wheelchair with a neurodegenerative diagnosis and to suffer the horrors of my own body being eaten alive by bacteria until my demise.

My greatest wish and the dream I have for Ireland is that we will now give that choice to all who need it.