https://www.kildarestreet.com/debates/?id=2017-06-28a.63#g98
Michael Healy-Rae (Kerry, Independent)
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I wish to raise the issue of Lyme disease and to highlight an example of where we have really failed in Ireland - the case of Anthony Morris in County Kerry. The Rural Independent Group met Mr. Morris last week, as well as Dr. Joseph G. Jemsek, who is an infectious disease specialist in America and who has worked with Mr. Morris in trying to create awareness around this issue.
As the Taoiseach knows, Lyme disease is spread through the bite of a black-legged tick which is infected with the bacterium Borrelia burgdorferi. It is a horrible, debilitating disease which, if left undiagnosed and untreated, can snowball out of control. We are very much lacking in six specific areas in Ireland. The first is a lack of proper recognition. The second is a belief that people cannot get Lyme disease here. The third is the Irish blood test. The blood test available here is called the enzyme-linked immunosorbent assay, ELISA. It tests the blood for antibodies created by the immune system to fight the bacteria which causes Lyme disease. The problem is that, in many cases, the disease affects the immune system in a way which does not cause antibodies to be made. If a person reacts negatively to the ELISA test it does not mean that he or she does not have Lyme disease. It means he or she has no antibodies to fight it. There are varying percentages of accuracy with the ELISA test, all of which are low. Ironically, those worst affected by Lyme disease will most likely have no antibodies to fight it, hence they become so unwell. These people will test negatively on the ELISA test.
The fourth area in which we are lacking is that the number of reported cases per year is vastly lower than the reality. This is because the person must first test positive on the ELISA test and then his or her doctor must report it. Therefore there is a huge gap between reported cases and the actual number. The fifth area in which we are lacking is that those with Lyme disease fall through the cracks. Many are not well enough to be students or to continue working. Lyme disease is not properly recognised, therefore they are not entitled to any help from the State or even a medical card. They fall through the cracks.
The sixth and final area is the most important. There is a lack of training and knowledge among medical professionals. I will give the Taoiseach some examples of this which relate to the case of Anthony Morris from Kerry. He has had chronic Lyme disease for the last ten years. He has been a shadow of his former self. He was once a very active man and a tough former Kerry football captain. He is now weak, in constant pain and has neurological symptoms. For the last ten years, his partner has been pulling him out of bed and helping him to walk. He is in constant pain and bone-tired with fatigue. Mr. Morris has not had a proper night's sleep in ten years. Being sick for so long is tough but what compounds the misery is years of mixed diagnoses, going from doctor to doctor and specialist to specialist, having test after test, being told he has ME, or that it is psychological or that he is perhaps depressed and that it is all in his head. He has been told to get more air, to get more exercise and to take antidepressants and has been told that will sort him out. One infectious disease specialist said that he could not be that sick and that he should shake himself off and get back to work.
For years Mr. Morris tried to convince the UK and Irish medical professions that he needed to be tested for Lyme disease and that the UK and Irish tests might not give accurate results. Mr. Morris paid to have his blood tested privately by a specialist laboratory in Germany. Guess what? That German laboratory proved that he had chronic Lyme disease.
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Leo Varadkar (Taoiseach, Department of An Taoiseach; Dublin West, Fine Gael)
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The Deputy is quite right to say that people can get Lyme disease in Ireland. Indeed people can get tick bites in our national parks and contract Lyme disease as a result. There is now a Lyme disease awareness week. That started in 2013 and is led by the Health Protection Surveillance Centre, HPSC. That is designed to draw public and media attention to Lyme disease, how to prevent infection, how to recognise it and how to be treated. The most recent Lyme disease awareness week happened in May.
Chronic Lyme disease, as opposed to Lyme disease, is a controversial diagnosis. There is a lot of dispute among the medical profession in respect of it. Lyme disease is diagnosed by medical history and physical examination and the infection is confirmed by blood tests which look for antibodies produced in an infected person's body in response to an infection. The testing involves a two-stage process which uses ELISA as an initial screening step. Screening enzyme immunoassays, EIAs, can give false positive reactions in the presence of other viral infections, so the second stage involves an immunoblot test, the western blot, which greatly increases specificity. Using this two-stage approach we are given a greater degree of certainty about the diagnosis of Lyme disease.
All clinical laboratories in Ireland must undergo continuous quality assurance to ensure that the quality of the diagnostics they provide is maintained at the highest international level. Some laboratories in Germany, the United States and elsewhere use other types of tests. These tests are not currently recommended by international groups, such as the Centers for Disease Control and Prevention, CDC, in the United States, on the basis that they are not sufficiently specific for Lyme disease and can give rise to over-diagnosis and false diagnosis. As the Deputy knows, Lyme disease can be treated very successfully using common antibiotics.
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Michael Healy-Rae (Kerry, Independent)
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I thank the Taoiseach very much. If the Irish blood test is accurate and the Irish medical system stand behind it 100%, is it okay for people who have tested positive on the German test to give blood to the Irish Blood Transfusion Service? That is an interesting question for the Minister for Health to think about. In the United States, the CDC, from which we get our guidance and which focuses on disease prevention and control, environmental health, health promotion and health education, grossly underestimated the original figures of people affected by Lyme disease. They now diagnose a minimum of 300,000 people with Lyme disease year on year. It is now so bad that these figures are expected to reach 1 million this year. Lyme disease is almost twice as common as breast cancer and six times more common than HIV and AIDS. Are we going to go down the same road of not acknowledging the severity and gravity of Lyme disease and the problem here in Ireland? What if the CDC is wrong and the German test is accurate?
Why has the National Parks and Wildlife Service not erected signage at all entrances to the national parks? Surely it has a duty of care to protect the member of the public who use them. Nearly all of our park rangers in one particular area, which I will not name, have Lyme disease at present. Nationally, up to 50% have contracted the disease. That is a shocking figure.
Finally, it is only right and proper to thank all the politicians who met, at the gates of Leinster House, sufferers of Lyme disease who came here over recent months. We met teenagers, 16 and 17 year olds, and their parents. They are at home in bed, riddled with pain. They are not able to go to school or to college. It is very wrong and I call on the Minister for Health and the Government to acknowledge Lyme disease and the enormity of what the future holds if we do not create awareness.
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Leo Varadkar (Taoiseach, Department of An Taoiseach; Dublin West, Fine Gael)
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I assure the Deputy that the Government is advised by the Chief Medical Officer on issues such as this because none of us are medical experts. As even those of us who have degrees in medicine are not experts in all of these fields, we rely on the advice of the Chief Medical Officer when it comes to issues such as this. We absolutely acknowledge Lyme disease. That is why there was a Lyme disease awareness week only last month. It is important to say, however, that chronic Lyme disease is a controversial diagnosis. The test used by the laboratory in Germany is not widely recognised internationally and may give rise to some very sick people, who need a lot of help and medical intervention, receiving a false diagnosis of chronic Lyme disease. We have seen similar issues arise with people who are very sick but attribute the cause of their illness to the HPV vaccine, or with people who have autism who may attribute the cause of their real illness to a cause that has not been established such as, for example, the MMR vaccine. This is an area where we must be guided by the best scientific and medical advice.
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