Special report: Lyme disease - Failure to tackle tick problem may come back to bite us

A ten-fold increase in the debilitating disease should have alarm bells ringing, writes Donal Hickey, especially as some experts believe the real rate is even higher.

Special report: Lyme disease - Failure to tackle tick problem may come back to bite us

The HSE has confirmed a ten-fold increase in the number of patient samples being positive after first-stage testing for Lyme disease in the Cork/Kerry region alone, in just over a decade.

Testing for the disease is a two-step process. The first step, called the Elisa test, is usually performed in an Irish hospital laboratory and the second confirmatory test (Western Blot test) is, in the case of Cork University Hospital (CUH), done by a UK lab.

Figures released by the HSE under the Freedom of Information Act show the number of first-stage, positive results for the disease from blood samples submitted to CUH rose from 44, in 2007, to 425, in 2018. Samples sent to the hospital for testing rose from 696 to 2,970 over the same period. However, the HSE has refused to disclose how many of these first-stage, positive samples were also positive after second-stage Western Blot testing in the UK.

Dr Eoin Healy, an expert on the tick species that spreads the disease, suggested that, perhaps, 80% of first-stage positive tests would also be positive after-second stage UK testing. If this is the case, there would be 340 confirmed cases of Lyme disease for Cork/Kerry alone, in 2018.

He described the figures as “alarming but not surprising” since there are good grounds for believing that many cases are undiagnosed, or misdiagnosed as conditions such as summer flu, chronic fatigue syndrome, fibromyalgia and other illnesses.

Since 2011, the HSE must report cases of Lyme neuroborreliosis, a severe form of the disease affecting the nervous system, to the Health Protection Surveillance Centre (HPSC) which recently confirmed 96 cases, between 2012 and 2018.

However, the HPSC said the true number of cases was not known, but believed there were at least 100 to 200 cases of milder forms of the disease in Ireland annually.

But, Dr Healy, a research associate at the UCC School of Biological, Earth and Environmental Sciences, said incidence of the disease was being massively underestimated and underreported.

“Extrapolating from the Cork and Kerry data, there are likely to be approximately 2,250 cases per annum in Ireland,” he said.

This equates to about 49 cases per 100,000 of population which is line with an average for Ireland as a whole of 56.3 cases per 100,000.

The HPSC’s suggestion of 200 positive cases annually equals 4.37 cases per 100,000.

Dr Jack Lambert, a consultant specialist in infectious diseases at the Mater Hospital, Dublin, who treats patients from all around the country, said there were far more than 200 cases.

He is treating around 20 patients from one county alone and claimed the recorded figures were only a tiny proportion of actual cases.

“I actually estimate there can be up to 2,500 cases annually, based on numbers recorded for Ireland, and the ones who get tested are just the tip of the iceberg. There may be 80 more for every 20 that are being tested,” Dr Lambert said.

Adding that many people may not realise they have been infected, he asked: “Who remembers a tick (bite)? Who remembers the rash?”

And it could be months, or years, later before the symptoms of the disease hit them.

A paper in the British Medical Journal, last month, showed a significant rise in the disease in the UK — up from from 1.6 to 12.1 cases per 100,000 of population over the period 2001 to 2012.

Key factors favouring tick proliferation include an increase in land under forestry cover and an expansion in deer populations The big driver in increasing tick numbers is forestry expansion. Land under forestry has practically doubled in the last 30 years, rising from 6.5%, in 1989, to 11% today. Increasing forestry provides more habitat for deer and greater deer numbers mean more ticks can feed and reproduce.

Special report: Lyme disease - Failure to tackle tick problem may come back to bite us

Tick numbers in some deer-inhabited parts of Ireland are on a par with anything Dr Healy — who has expertise in the field of tick ecology and Lyme disease — has seen in northern France or southern Scandinavia.

The range of Red deer in Ireland grew more than five-fold over roughly the same 30-year period, while the Sika deer range more than trebled over the same time. The range of European fallow deer also increased, but to a lesser extent.

Deer are far more efficient meal-providers for ticks than cattle or sheep.

“The numbers of ticks found on an individual deer may be 100 times that seen on a single sheep or bovine grazing in a tick-infested habitat,” said Dr Healy,.

Rising temperatures and an increase in annual rainfall are also helping to grow the tick population in Ireland, which is reproducing for a greater part of the year. Another factor, Dr Healy believes, is the EU “set-aside” policy from 1988 to 2007, designed to address food surpluses and environmental concerns, whereby farmers were encouraged not to work parts of their land.

This policy resulted in the spread of bracken, furze and rushes which have not only provided moist cover for tick survival but also an increase in habitat for small mammals and birds which are key wildlife hosts for ticks.

‘We went through many upsetting GP and paediatrician consultations and hospital visits that led to no conclusion and often a suggestion that it was in his or our own heads’

Linda Mannix says her young son’s condition went undiagnosed for years until she herself was bitten by a tick disease, and similar symptoms finally led to Lyme disease diagnosis.

FIVE years ago, my son, Jack, contracted Lyme disease and co-infections we believe from a tick bite he received at only 13 months old. It happened in what we thought was a safe place, our own garden.

We live beside a wooded area, 8km from Killarney National Park, which is home to many deer that would have often frequented our lawn. 

We thought this was amazing at the time, but we were very naive and uneducated to the dangers of ticks that deer can carry and the diseases they may transmit.

We began to notice a decline in Jack’s health from the age of two and a half years after he was unwell for a short period with a common gastric bug.

We never made a correlation between his ill-health and that tick bite. We went through many upsetting GP and paediatrician consultations and hospital visits that led to no conclusion and often a suggestion that it was in his or our own heads, as most of his test results came back normal.

This continued for a year and a half. He was extremely fatigued all the time, had excessive night sweats, had pains up and down his legs that regularly stopped him walking.

He would wake with night terrors and often couldn’t stand the light or noises. He lost his zest for life and could not keep up with his peers.

The story changed when I had the misfortune — or sometimes I feel the fortune — of getting bitten by ticks myself in the autumn of 2015, two years after Jack did. 

At that time, I was running a lot in Killarney National Park and never noticed the ticks attached.

But I did have two classic bull’s eye rashes appear on my legs that are synonymous with tick-transmitted infections such as Lyme disease. 

Linda Mannix, of Faha, Killarney, Co Kerry in Killarney National Park. The family live 8km from the park, but she was unaware of the dangers posed by deer. Picture: Don MacMonagle
Linda Mannix, of Faha, Killarney, Co Kerry in Killarney National Park. The family live 8km from the park, but she was unaware of the dangers posed by deer. Picture: Don MacMonagle

Again, I was ignorant to the fact that this was a serious situation and I could become ill from it.

Lyme disease never entered my head. I ignored the rashes but started to feel unwell six to eight weeks later with fatigue and drenching night sweats.

This developed into many random symptoms over time including vertigo, facial nerve pain, ear pain, pins and needles in my feet, migratory joint pain to name a few along with unimaginable fatigue that never lifted no matter how much I slept.

By this time, I think our GP was at a complete loss as to what to do with both Jack and I. However, in one of the consultations she asked if had we ever been bitten by a tick and suffered a bull’s eye rash.

This was the beginning of getting some direction to our illness. She carried out a blood test on both of us and then deemed us not infected with the Lyme bacteria when the results came back negative.

What was to follow over a 14-month period, from the time I had two bull’s eye rashes to actually getting an official diagnosis of Lyme disease, was medically shocking.

I saw five consultants over various disciplines, two neurologists from different hospitals, an ear nose and throat consultant, an immunologist and a cardiologist. 

I told them all my history of having two bull’s eye rashes (erythema migrans) at the onset of my ill-health; that I had ran regularly in Killarney National Park and that I believed I was experiencing classical, Lyme disease-related symptoms.

I asked each of them if this could still be a case of Lyme disease and all said no because I had a negative blood test. I also attended many physiotherapists and chiropractors in an effort to deal with the pain I was experiencing.

After doing more research into the accuracy rate of the typical testing system used to diagnose Lyme disease in Ireland and the UK, I found that this test has poor sensitivity rates and can miss some infections, particularly if the testing has been delayed from the time of the tick bite.

With this information, I asked to be referred to an infectious disease consultant in a private hospital in Dublin.

This consultant understood the limitations of the testing system, had many years’ experience working in Lyme-endemic areas in other countries and he requested I send my blood to Germany for further more specific testing.

This resulted in a positive laboratory result for a current infection of Borrelia bacteria with co-infections and I was given the diagnosis of Lyme disease.

Subsequently, our son Jack was diagnosed and treated via the same consultant, something I believe may never have happened unless my own case was examined first.

What other children are out there with unexplained symptoms? Unable to verbalise what is going on in their small bodies, they are at the mercy of a healthcare service without the correct training and tools to deal with this infectious disease.

Lyme disease is something that, I believe, was staring all those doctors in the face but who were inexperienced and ill-equipped with knowledge of this disease. They could not see past the negative blood test.

This is something I hope can change for Ireland soon as many people are going without diagnosis, are suffering and deteriorating rapidly and unnecessarily.

HSE guidelines for healthcare professionals covering Lyme disease do exist but could be updated, amended, or at the very least recirculated to enhance awareness in the medical community.

I would hope amendments would specifically take into account the misleading statement used that a bull’s eye rash is present in 80%-90% of cases and to include the NICE guidelines (National Institute for Health and Clinical Excellence) which are the medical standards used in the UK.

They state: “Do not rule out diagnosis if tests are negative but there is high clinical suspicion of Lyme disease”.

Clinical symptoms and exposure to tick habitat areas need to play a much stronger role in first-line, defence healthcare.

Following diagnosis, Jack and I began a long, complicated treatment journey; this involved an array of antibiotics lasting up to 13 months in my case, herbal treatments, immune boosting supplementation and alternative therapies.

At one point, I was taking up to 35 tablets a day. Imagine also trying to do a similar treatment plan with a four-year-old.

The cost of treatment was astronomical. Just to get to diagnosis stage once we were on the right path it cost about €1,000 each.

And this figure discounts all the previous doctors, consultants, hospitals etc.

Then began large, monthly payouts for necessary drugs, supplements and herbal treatment. We decided to do other alternative therapies alongside this programme, which also took a huge toll financially.

I was unable to continue working once I started treatment. I then tried but failed to return to work consistently after I had been on the treatment plan for some time. 

I wonder where we would be today had we not the financial means and educational background to pursue our fight for health?

I was lucky to have a background in science as I studied microbiology in UCC as well as having 15 years’ experience working as a laboratory analytical chemist. 

With money, you can use the private sector health service which was the only avenue that offered any positive outlook for us.

I tried to attend a public infectious disease consultant after my official diagnosis to discuss my treatment plan and get a second opinion, but he refused to see me even after my GP wrote and followed up with a phone call looking for an appointment for me.

It is now almost three years since we began treatment and I am so happy to say we are both doing well. We have beaten the infection but it has caused some damage that I hope will abate in time.

We have weakened immune systems and do not have the same strength and energy as before, but I feel so lucky to be in the position I am in right now. 

I am back to being a fully functional person and Jack is holding his own at school and general life.

A Lyme disease rash. File image
A Lyme disease rash. File image

Jack has had fantastic support from his school with regular occupational therapy and learning support. 

I know from the network of other Lyme sufferers I have been in contact with that “recovered” is a word rarely used.

This is an unbelievably complicated disease, both in diagnosis and treatment. 

It requires a huge multi-dimensional approach to treatment and a lottery win it seems.

There is a difficulty for frontline GPs who face a very complex task. 

The testing system is simply not good enough and has limitations that are widely written about in well-respected scientific material.

Our Government needs to take action to raise awareness among the people and healthcare professionals in at-risk areas. 

Prevention has to be on the forefront of everyone’s mind going forward. It has been scientifically proven that ticks in Ireland do carry the bacteria responsible for this disease at an alarming high frequency in some areas.

Why can we not follow the protocols that are used in other Lyme-endemic countries such as Connecticut, USA and the Black Forest in Germany? We know it is here so let’s deal with it professionally and openly.

I feel very strongly that it should become part of the education programme in primary schools, particularly in at-risk areas. 

Children are most prone to picking up ticks due to their exploratory nature.

Going off the walkways and into long grasses or shaded wooded areas should ring alarm bells in their minds, especially when in at-risk areas. 

Otherwise, we are failing them and possibly their future.

It is a very complex subject. Some people will get sick when bitten and others will not. 

The old saying that prevention is better than cure has never been truer than in this case.

More needs to be done to avoid missed diagnoses

Tick-borne infections are common here but the numbers don’t add up, writes Donal Hickey.

MANY GPs are failing to diagnose Lyme disease in their patients and the current blood testing system for confirming the disease is also missing a significant number of cases, it has been claimed.

Dr Jack Lambert, professor of medicine and infectious diseases, Mater Hospital, Dublin, and UCD, said even though tick-borne infections are common in Ireland, many GPs and specialists are missing the Lyme diagnosis.

“Most patients I see with long-standing Lyme have gone to a GP at one time, who misdiagnosed their rash as ringworm or did not even think of Lyme as part of the differential diagnosis,” he said, adding that the current testing regime does not pick up all the strains of Lyme and co-infections that can come from tick bites.

Hundreds of people around the country may also be under the mistaken impression they are free of Lyme disease, after being falsely tested negative for it.

The Health Protection Surveillance Centre undertakes a number of activities to raise awareness of tick-borne illness. Picture: Eddie O’Hare
The Health Protection Surveillance Centre undertakes a number of activities to raise awareness of tick-borne illness. Picture: Eddie O’Hare

The HSE, however, said there had been a marked increase in awareness among GPs and hospital doctors over the last number of years.

Each of the HSE’s hospital groups have a number of infectious disease consultants expert in the diagnosis and management of Lyme disease, according to the HSE.

GPs get results back from laboratories as positive and prescribe antibiotics for a patient. 

GPs are not in a position to classify the condition as neuroborreliosis, or any other form of it, and the vast majority of patients will display multiple symptoms, according to Dr Eoin Healy, research associate at the UCC School of Biology, Earth, and Environmental Science.

The net result is that very few cases are reported as neuroborreliosis. Yet, a study in Galway showed that about 50% of patients with Lyme displayed some neurological symptoms.

Testing procedures now used in hospital and state-run laboratories involve such a long delay between an initial patient-GP appointment and the results of a final confirmatory test that the risk of the disease entering the chronic phase is unacceptably high, according to Dr Healy.

“It is high time that direct detection of the disease-causing bacteria using available and proven DNA-focused technologies became standard practice rather than relying on serological (blood) testing which, in this instance, is not effectively serving its purpose,” he said.

Educational campaigns are needed for the public and doctors so that an awareness of the risk of Lyme disease is vastly improved and early diagnosis becomes the norm rather than the exception.

The manufacturers of the test kits themselves concede that not all Lyme cases will be detected by their products, said Dr Healy.

Testing is currently done in two steps — an initial screening test followed by a second confirmatory test for samples which are either positive or “doubtful” after the first test.

However, in the case of the first-stage test, the laboratories in Cork University Hospital, University Hospital Limerick, and Galway University Hospital each use different methods, so the accuracy and consistency of testing may vary from region to region.

“The manufacturers of the test kits concede that their products may fail to detect a considerable number of cases of early stage Lyme disease,” said Dr Healy.

One in five of such cases of Lyme disease may go undetected by the screening test and are actually false negatives. Only those cases with a positive or ‘unsure’ result on the screening test go forward to the second confirmatory test.

Dr Healy said problems escalate when it comes to second-stage testing as all Irish laboratories send samples to the Rare and Imported Pathogens Laboratory (RIPL), in the UK for confirmatory testing.

And there is considerable debate in the scientific community about the limitations of methods used in second-stage, known as Western Bloc test.

PRIOR to 2012, all second-stage testing of CUH Lyme results was carried out at Southampton University Hospital labs. Following much criticism, testing was transferred to the RIPL, Wiltshire, where a new version of the Western Blot test was introduced and new staff were trained in its use.

Looking at CUH Lyme results from this second-stage testing, in the UK, the percentage of positive results returned from RIPL for 2012-2013 was less than half of that for the period 2007-2011.

“This unusual and inconsistent pattern followed immediately on the transfer of testing from Southampton to RIPL, the introduction of a new test methodology and training of new staff in use of the test and, critically, interpretation of test results,” said Dr Healy.

Dr Eoin Healy using a standard method to search for ticks. Picture: Eddie O’Hare
Dr Eoin Healy using a standard method to search for ticks. Picture: Eddie O’Hare

“If the anomalous results for 2012 and 2013 reflect problems in the transfer of testing from Southampton to RIPL then the conclusion would be that Borrelia (Lyme) confirmatory testing may have been significantly under-reported, at least for these two years.”

As a result, Dr Healy believes as many as 150 people in Cork and Kerry may have been incorrectly given the all-clear for Lyme disease in 2012 and 2013.

This would obviously have implications for other Irish hospital laboratories outsourcing confirmatory Lyme testing to Southampton and RIPL in the UK over the period in question.

“Extrapolate to the whole country to take account of other hospital labs using RIPL for second-stage testing and you get a lot of false negatives and a lot of people walking around in ill-health who have been told that they do not have Lyme disease,” said Dr Healy.

Lyme can display a range of symptoms. If the nervous system is affected then it is termed “neuroborreliosis”, the notifiable form of the disease.

But there are several other forms of Lyme which do not have to be reported.

Dr Jack Lambert, meanwhile, said most GPs are unaware of this condition and hear ‘second-hand’ information from various consultants, many of whom dismiss it as a real disease in Ireland or a disease that Irish people bring back with them from travels.

He told a joint Oireachtas committee on health in November 2018 that the Lyme test is unreliable, roughly 50% accurate, and does not capture many of the different strains of Lyme circulating in Ireland. The test often does not show positive in patients with active Lyme disease.

“Without a positive test result, people cannot get treatment. Persons who can afford the cost often go to Germany to get specialist tests done on Lyme with the hope a positive test result will secure treatment,” he said.

“It is not uncommon for these tests — designed to capture more strains of the bacteria — come back positive when the Irish tests were negative.

“When presented with the positive test results, Irish GPs and consultants say ‘We don’t recognise these tests because these German laboratories are not accredited.’ These German laboratories are accredited— it appears doctors have been misled and they are misleading patients.”

Kerry woman Linda Mannix, who contracted the disease and who has a background in science, maintained that neuroborreliosis can only be positively diagnosed using testing done on the spinal fluid. This is typically obtained by a lumbar puncture.

“This is a very invasive technique and would normally be requested by a consultant neurologist. If positive, this is the only instance that will amount to a reported case of Lyme disease in Ireland,” said Ms Mannix.

But few people undergo lumbar puncture and neither of two neurologists she attended suggested one to her. Irish people are being left in a dangerous position, with a serious health risk being denied.

“We need to move to a reporting level where the blood tests are included and new more advanced specific and sensitive testing methods are explored, coupled with the very real use of clinical diagnosis,” added Ms Mannix.

Cork/Kerry incidents surge from 44 to 425 in 10 years

We asked the HSE questions about Lyme disease. Here are the replies:

Question: Is the HSE concerned about the high incidence of Lyme disease — from 44 positive samples, in 2007, to 425, in 2018, for tests in the Cork/Kerry area alone?

Answer:  It is not possible to comment specifically on the figures in relation to the perceived rise in positive laboratory samples from Cork and Kerry without more detailed information to understand the context.

Q: Some medical and scientific professionals say the number of cases nationally is seriously underestimated and could be as high as 2,500. Any comment?

A: In recent years, laboratories in Ireland have reported an increase in the numbers of requests for testing for Borrelia antibodies, but the overall percentage of positive results has not increased.

Special report: Lyme disease - Failure to tackle tick problem may come back to bite us

An increase in positive samples may reflect higher demand for testing due to increased awareness among patients and doctors. 

About one third of samples which are positive in the first test are confirmed by the second test.

Between 2012 and 2018, there were 96 reported cases of the notifiable Lyme neuroborreliosis (Lyme disease which affects the nervous system), an average of around 14 cases per year.

Q: Is HSE satisfied with the first step (Irish hospitals) and second step (Porton Down Laboratories, UK) testing systems for samples?

A: The HSE is satisfied with the laboratory testing systems used to investigate suspected Lyme disease. The tests used are well characterised, standardised and highly reproducible.

Q: Is there a need to educate GPs and other medical professionals about diagnosis and treatment in the light of claims of missed diagnosis because doctors don’t know enough about the disease?

A: The Health Protection Surveillance Centre is continuously involved in raising awareness and providing information on Lyme disease for healthcare workers and the general public.

Q: Any plans to create more public awareness in the light of what is perceived to be a lack of information about risks of picking up the disease and knowledge of its symptoms?

A: The Health Protection Surveillance Centre undertakes a number of activities to raise awareness of tick- borne illness at a national level including an annual Lyme Awareness Day, which took place this year on April 29.

The campaign included press releases, media appearances and interviews. Messages on preventing tick-borne illness are reinforced at regular intervals by tweets and posts on the centre’s social media platforms.

Q: Do tests show victims of the disease are also affected by other bugs from tick bites?

A: Laboratory antibody tests for Lyme disease only test for the presence of antibodies to Borrelia, the bacteria that cause Lyme disease.

Q: Only the neuroborreliosis (affecting the nervous system) form Lyme disease is currently a notifiable disease to the Department of Health. Are there plans to make other forms of the disease notifiable?

A: In line with the European Centre for Disease Control Surveillance programme, only cases of Lyme neuroborreliosis are notifiable in Ireland. There are no plans to make other forms of the disease notifiable at this time.

Tick population will continue to grow as deer numbers rise

By Donal Hickey

Tick populations in Ireland that spread the Borrelia bacteria which causes Lyme disease will continue to grow as long as deer numbers continue to increase, a leading researcher has warned.

However, Dr Eoin Healy feels that, in the short to medium term, it is unlikely a reduction in either deer numbers, or their distribution range, will occur to the extent that it would reverse the rise in the tick population experienced in the last 20 to 25 years.

Lyme disease affects multiple systems in the body and can be contracted by people following a bite and associated blood-sucking by a tick.

Special report: Lyme disease - Failure to tackle tick problem may come back to bite us

The particular tick species (Ixodes ricinus) that carries the Lyme-inducing bacteria is widespread throughout Ireland.

Once a tick bites an animal or human, it penetrates the skin and stays attached for several days until it becomes engorged with blood. It then detaches and drops off.

A tick behaves in quite a different way to, say, a horsefly or mosquito which takes a quick blood-meal and then disappears after a few seconds.

The tick — also known as the common tick or sceartán (in the West of Ireland) — is a blood-sucking parasite which can feed on a broad range of mammals and birds, especially larger ones such as deer, cattle, sheep, and goats and even smaller ones including rabbits, foxes, and woodmice.

Blackbirds and other songbirds are also important tick-carriers. Between 5% and 15% of these ticks contain the bacteria which causes the disease, which means that a bite does not necessarily result in a person developing the disease symptoms.

A steady breeding population of ticks needs a large enough area of moist habitat and enough animal hosts on which the ticks can feed. However, even a well-kept, suburban garden might contain a small number of ticks transported there by songbirds.

Tick activity in most parts of the country begins towards the end of February and reaches a peak in late April to May, after which it drops to a very low level in July/August.

After that, activity rises to an autumn peak and then reduces to near zero until the following spring.

However, as the south-west and west coast of Ireland have a milder climate, significant numbers of ticks are active, most years, on mild days in winter in these areas, according to Dr Healy.

In a tick-infested habitat, they are most likely to be found close to animal tracks, on grassy verges of woodland paths, on roads grazed by deer, and close to rest sites used by cattle and sheep.

Well-grazed, short grass is likely to have few ticks, but rough, wet grazing land with rushes and bracken provides a very good habitat for tick survival.

Broadleaf forests with deer can have very high tick populations, but coniferous forests have lower infestation levels.

More on this topic

Most people in UK who think they have Lyme disease, probably do not, expert saysMost people in UK who think they have Lyme disease, probably do not, expert says

Cases of Lyme disease soar in Cork/Kerry regionCases of Lyme disease soar in Cork/Kerry region

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