Dr. John Lambert:

Farmers pick ticks off animals every day and pet owners pick ticks off their dogs every day. Every farmer and forestry worker in Ireland knows their animals are bitten by ticks and become sick with a variety of bacteria. The sick animals suffer from tick-borne diseases such as Lyme disease, Borrelia, Anaplasma, Rickettsial infections and Babesia, which causes red water disease in cattle. Do committee members think these ticks might be biting humans as well? The HSE's Health Protection Surveillance Centre, HPSC, website describes Lyme disease, a tick-borne infection, as a rare disease in humans in Ireland, with ten cases reported annually, and it estimates there are 100 cases nationally. However, a study from the blood bank in 1991 showed 9.75% of blood donors were positive for the Lyme disease antibody. This is not ten cases a year. An antibody means exposure or active infection. This means almost 10% of over 4 million people, which is 400,000, have had a tick bite. It is not a rare disease.

How does the HSE's estimate of ten to 20 cases a year compare to 400,000 exposures or active infections? In addition to Lyme disease, people also become ill from other infections, such as Anaplasma and Babesia. There is no recognition of these diseases or the co-infections on the HPSC website. Several years ago, I did a study of people with sudden illness who were then diagnosed with chronic fatigue. A total of 25% of the patients, mostly from rural communities, were Anaplasma positive. I treated them with antibiotics and they got better. I would rather have a longer course of antibiotics and be cured of chronic fatigue than have a lifelong diagnosis of chronic fatigue. Many believe there are huge underestimations of the true burden of tick-borne diseases in Ireland. Thousands of annual cases are more likely than ten or 100.

Let us consider these scenarios, which I deal with every day. A person goes for a hike in Wicklow and gets bitten by a tick but he or she does not see the tick bite. Three days later the person develops a fever, numbness and tingling all over. Another hiker gets a summer flu and aches and pains all over. A farmer develops migratory arthritis and strange neurological symptoms. These people see a rheumatologist and are diagnosed with rheumatoid arthritis but nobody thinks of Lyme disease. I had an example from Letterkenny last week. Lyme disease should be higher on our list. Some people have a rash and some do not. They may or may not remember a tick bite. The HPSC website states people should remember a tick or a rash but 80% of people do not.

Where do people sick from tick bites go? They go to their GPs. I hear all the time that those who remember the tick bite are told by their GPs that there are no ticks in Ireland, ticks do not spread Lyme disease in Ireland and people only get Lyme disease in Connecticut as that is where it was first diagnosed. They are asked whether they have travelled to America. They are also told they have ringworm or cellulitis.

Even though tick borne infections are common in Ireland, many GPs and specialists are missing the diagnosis. They do not consider Lyme disease as a possible diagnosis and when they do consider it they wait for a positive test. The trouble is the antibody test for Lyme disease only picks up 50% of cases. It should be a clinical diagnosis. Somebody with a tick bite and a rash who is unwell should be treated. The doctor should not wait for the antibody test. However, doctors do wait for the anitbody test, which is only 50% sensitive. If it is negative they tell people they do not require treatment because it is not Lyme disease. Lyme disease requires a clinical diagnosis supported by testing. None of the consultants or GPs seems to understand this. Other strains of Lyme disease are missed as are co-infections. Often, the test does not come back positive in patients with active Lyme disease.

Without a positive test result, people cannot get treatment. Persons who can afford it go to Germany to get special tests and special treatment. The reality is we need treatment and diagnostic tests in Ireland for everyone and not just for those who can travel abroad. People state the German laboratories are not accredited but this is wrong. This is a rumour that is spreading in Ireland. Sadly, many patients who get a tick bite and a rash get the German test and bring it back but are told by their consultants and GPs that they will not accept it.

The recommended treatment on the HPSC website for Lyme disease is two weeks of antibiotics but many people do not get better after two weeks of antibiotics. They are still sick. They are then told it is post-infectious and to live with it. Many studies have shown that people get better with longer courses of treatment. What is the harm of a longer course of antibiotics? We treat every infectious disease in the world based on our clinical response but not Lyme disease. Treatment is stopped after two weeks and if the person is still unwell he or she is told it is post-infectious. It is a challenge for patients, let alone for clinicians to prescribe when there are guidelines and one is criticised if one does not adhere to them rigorously.

What happens if Lyme disease is not treated? Multiple peer reviewed publications by the Infectious Diseases Society of America, which has 15,000 specialists, state the infection is over after two weeks but many other studies show longer courses of treatment benefit patients. These studies are ignored. A draft of the HPSC Lyme disease guidelines that I reviewed recently stated that even without treatment the infection spontaneously goes away. It does not. In a study by Dr. Stricker, an infectious disease specialist, 75% of Lyme disease sufferers had arthritis, 15% had neurological diseases and 2% to 10% had cardiac disease, as it affects the heart, two years after being left untreated. None of these studies is included in the HPSC Irish guidance.

During the revision of the international classifications of diseases, ICD-11, the World Health Organization, WHO, developed new categories of Lyme disease that identified five life-threatening complications, including many late stage and chronic conditions; severe complications related to the brain, that is, neurological Lyme disease; and congenital Lyme disese, that is, Lyme disease that spreads from mother to child. The guidelines have been released in the past six months. None is included in the HSE's document or that of the Health Protection Surveillance Centre, HPSC.

In contrast, the status of Lyme disease policy, opinions and the stakeholder process in Ireland is very outdated. The Government has been fully engaged in the ICD-11 revision process with the WHO, the results of which were released in July. However, the Infectious Diseases Society of Ireland, the HSE and the HPSC continue to present outdated views on Lyme disease. They claim it is a rare disease, one that is easy to diagnose, treat and cure, and do not recognise persistent chronic Lyme disease. Most of the patients I see have persistent chronic Lyme disease. They respond to antibiotics and can be cured.

The HPSC is rewriting its Lyme disease guidelines. However, its process only includes the opinions of consultant doctors who do not believe in persistent infection, advocate maintaining the unreliable testing strategy and repudiate the longer courses of treatment on which patients are getting better. These are internationally accepted guidelines, but they are planning on adopting the guidelines of the National Institute for Health and Care Excellence, NICE, of which the United Kingdom has carried out a review. The Irish bodies are rubber-stamping everything that has been done. They are maintaining that Lyme disease is easy to diagnose, that there is no such thing as chronic Lyme disease and that a short course of antibiotics will make people better. They have excluded most of the international peer-reviewed publications and do not accept the WHO guidelines. Why are we copying inaccurate guidelines, rather than independently reviewing all of the evidence?

I recently announced the opening of a Lyme disease resource centre supported by private donor funding. I work at the Mater hospital and Lyme disease patient groups have helped to determine the services of the centre, the two main objectives of which are education and research. Its activities will include public education, for example, signage, to inform people that they should be aware of ticks, as most people are not, and how to prevent bites. The centre will also train GPs, the first practitioners to see patients and they are missing it all the time. We intend to train GPs to better consider Lyme disease in their differential diagnosis when they see a bull's eye rash, rather than calling it as shingles, ringworm or cellulitis. These diagnoses have been made in cases I have seen in the last couple of weeks. The centre will also raise funds for research into these infections. We need to better understand the animals, humans and ticks in Ireland. A complex interaction takes place once a person has these infections. It is a debilitating inflammatory condition which people call an autoimmune phenomenon. However, it is an infectious disease that triggers inflammation and autoimmunity. It is not a post-infectious condition but an ongoing one.

The Centers for Disease Control and Prevention, CDC, and the European Union have announced increasing rates of Lyme disease infections. They are now stating there are 850,000 cases in the European Union and 400,000 in America. They have upgraded their previous estimates by between 10% and 100%. We need education, prevention, better diagnosis and treatment for patients. Our mission is better health for those whom we serve.

What does Ireland need to do to address tick-borne diseases? The cost of undiagnosed, untreated and undertreated tick-borne diseases is not known. The costs incurred in America are estimated to be huge. The cost of diagnoses of chronic fatigue, fibromyalgia and lifelong disability is huge compared to that of catching Lyme disease early and providing treatment upfront. Patient groups and politicians have taken the lead in identifying the lack of diagnosis and care experienced by Lyme disease sufferers in Ireland. Those persons who have resources can travel abroad and access the more sensitive tests and treatment options offered by private care providers. What about people in County Donegal who cannot afford to take the bus to Dublin for treatment, let alone pay €5,000 for treatment in Germany? There are huge social inequalities.

There is a clear disconnect between what doctors and the Health Service Executive are doing in Ireland and the advances proposed by the Irish in EU forums in Belgium and WHO forums. We need to come on board with them. The HSE and the Minister of Health need to disband the current committees that appear to be rubber-stamping current opinions which are outdated. They appear to be unaware of new developments announced worldwide in the treatment of tick-borne infections. Clinicians must treat those who suffer from tick-borne diseases with dignity and support their right to care. Chronic Lyme disease infection, with all of its complications, is devastating millions of lives across the globe, including thousands in Ireland. It is unprofessional for a doctor who cannot find the cause of an illness to resort to telling the patient that he or she is depressed or suffers from a psychosomatic illness. However, this is an experience common to patients of whom I take care before I see them. There is huge stigma and ignorance about Lyme disease. Kind and compassionate medical care requires clinicians who understand the limitations of their knowledge and testing strategies and believe their patients when they say they are indeed ill but the healthcare provider cannot identify a source. Rather than dismiss the patient’s experience, it is better to acknowledge that he or she is sick, even if the reasons are not well understood. Clinicians need to work with the patient to find the cause of the illness and work with him or her to make him or her better. Better tick-borne diseases education and support for GPs on the front line are required in order that the cost of debilitation and disability can be reduced. The immediate investment of moneys in the public hospital system to establish a public clinic for those who cannot afford private care is required. All patients in Ireland with these conditions deserve reliable testing and individualised treatment. A funded campaign to educate patients on prevention and early identification is recommended.

We are a nation of compassionate people who enjoy many recreational activities provided by this beautiful island, but watch out for ticks. Many of us love to hike, garden, play football or rugby and simply enjoy the natural beauty of this land. Many depend on the land for their livelihood. Many members of the population travel frequently to tick-endemic areas and bring these illnesses back with them. These factors put most of us at risk of contracting tick-borne diseases, but they are also incentives for Ireland to become a leader in the science and medicine of tick-borne diseases.