Beara students highlight the dangers of Lyme disease

A group of students in Transition Year from Scoil Phobail Bhéara, Castletownbere, are choosing to focus their Young Social Innovators project on tick bites and Lyme disease.

The group have named themselves “LymeLight” in the hopes of shedding some light, raising awareness and educating people on the dangers of Lyme disease. Their incentive for doing this project was the alarming rate of people diagnosed in their local area, and the lack of awareness and education surrounding this condition. Other reasons for the choice included

❖ Recent high levels of diagnosis nationally

❖ A number of staff and students in the school have had the disease or are having treatment.

❖ Prevalence of tick bites especially in summer months.

❖ Increased deer population equals increased risk.

❖ Lack of awareness of the disease prior to diagnosis or through knowing someone who was diagnosed.

❖ Prevent further spread of the disease.

❖ Highlighting the risk of tick bites both for those living in the area and the many tourists who visit the area including walkers, cyclists and sight seers.

❖A number of local people with chronic Lyme

Lyme disease is a disease transmitted by the bite of an infected tick. These ticks are common in woodland and grassland areas, near where deer-the most popular carrier of ticks-lie. A bulls-eye rash around the bitten area is the most common indicator that a person may have contracted Lyme disease, however fatigue, insomnia and numbness are just some of the symptoms surrounding this condition.

Children are at the highest risk of contracting Lyme Disease and are more vulnerable to central nervous system infections.

Transmission of Lyme Disease and other infections can take place in a matter of minutes, particularly if the tick is not removed properly.

Lyme Disease is called “The Great Imitator” and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses.

Studies show that standard laboratory tests  miss approximately half of actual cases, leading to misdiagnosis and an infection that is more difficult to treat.

Lyme Disease has 6 times more new cases each year than HIV/AIDS.

Fewer than 50% of patients with Lyme Disease recall a tick bite or any rash.

There are no tests available to prove that the bacteria that causes Lyme Disease has been eradicated or that the patient is cured after treatment.

The most common carrier is the blacklegged deer tick.These ticks, often the size of a poppy seed, can leave an undetectable bite.

Lyme disease is a world-wide infectious disease and has been found on every continent but Antarctica.

Fewer than 50% of people infected get the bull’s eye rash. Some develop flu-like symptoms a week or so after becoming infected, however, many people are asymptomatic but can develop Lyme symptoms months, years or decades later.

Common Symptoms include: fatigue, neck stiffness or pain, jaw discomfort, muscle pain, joint aches like arthritis- typically in the knees, swollen glands, memory loss, cognitive confusion, vision problems, digestive issues, headaches and fainting.

There is no legal requirement on doctors to report cases of Lyme disease to the HSE.

Lyme disease can affect anyone but is commonest among runners, hill-walkers, hikers, campers and others whose leisure activities or work takes place in heath land or light woodland areas or brings them in contact with certain animals, eg. deer.

Summer and autumn is the period when most cases occur.

Currently there is no vaccine available against human Lyme disease in Ireland.

The ongoing rise in Lyme disease cases worldwide – thought to be driven by climate change, leading to warmer .

A number of cases are diagnosed each year, but the true figure is not known for certain. However, recent estimates suggest that there are at a minimum 150-300 new cases confirmed per year. It is likely that the true figure would be higher than this.

In Europe, the incidence is highest in people aged 30-50 years, but is also quite common amongst children.

Lyme is the most prevalent vector -borne disease and is found in more than 65 countries worldwide.

Ticks are most active from April to September, which is prime time for bites that can cause Lyme disease.

The transition year students undertaking this project were shocked at the lack of awareness that there is for Lyme disease in Ireland. They learnt that it is not common practice to test for this condition in this country, and as a result the condition is often misdiagnosed as arthritis or fibromyalgia, which share similar symptoms. Patients have to ask doctors for separate blood tests for Lyme disease. This is alarming in contrast to other countries, such as Germany, in which it is standard practice to be tested for Lyme disease. Newly trained doctors in Ireland are not trained to test for Lyme disease, and this is highly likely to be a contributing factor for the amount of misdiagnoses.

The students plan to propose a list of recommendations to the HSE, and local authorities in Ireland, particularly parks and walking trails, where one is most likely to obtain a tick bite. Their main hope is to raise awareness within Ireland so that the dangers of Lyme disease are common knowledge to Irish people, because as a local sufferer of the condition says; “No one gets it till they get it”.

After approximately 3000 surveys and questionnaires their main findings included

·       Only 63% of those surveyed had a knowledge of ticks.

·       52% learned about ticks through personal experience and 10% from their family doctor.

·       31% were aware of tick borne diseases.

·       19% were informed of tick borne diseases by family doctor while 27% learned of same through personal experience or 18% through friends experiencing such infection.

·       43% could recognise a tick while 30% did not know if they would recognise a tick on their skin.

·       47% learned to recognise a tick through family, 2% from family doctor and 26% through personal research online.

·       74% of those surveyed do not ever remember being bitten and only 10% of those know what bit them.

·       Of those bitten and with Lyme disease 32% were west cork based, 29% lived in Kerry and 15% west of Ireland.

·       58% were bitten in summer, 33% in autumn and 9% did not know when they were bitten.

·       Those who work outdoors – farming, gardening are most likely to receive infected tick bites while walkers, cyclists and sunbathers were high risks.

·       In national parks, walking or cycling routes and playground no one noticed any warning notices about tick reminders to check for ticks in Ireland whereas in the USA (In most states) signage was very visible and effective.

·       60% remove the tick themselves while only 15% sought medical attention.

·       13% ignored tick bites and they simply went away, while 45% used a tweezers to remove this,21% put lubricant cream on it and 21% removed the tick by hand.

·       Only 1% sent the removed tick for testing and no one notified anyone of the bite.

·       Over 75% experience symptoms after the bite but 1% suspected a possible tick borne infection.

·       Doctors suggested testing for Lyme disease in only 17% of cases of people with symptoms while 28% asked to be tested for same.

·       85% were diagnosed following testing and processing of results outside Ireland.

·       49% recall using the Eliza test and 67% the blot test.

·       70% of patients without confirmed diagnoses were prescribed antibiotics as a precaution prior to confirmation of results.

·       Over 60% of people began to feel unwell approximately 1 week after possible bite.

·       Treatment times varied significantly depending on time elapsed since possible bite, stage of development of Lyme disease at time of diagnosis and number of medical professionals attended before diagnosis.

·       1% had no prior knowledge Of Lyme disease prior to diagnosis

 Living with Lyme challenges/affects

Ø Severe tiredness

Ø Long periods asleep

Ø No energy

Ø Mood swings

Ø Headaches

Ø Depression

Ø Constant flu like symptoms

Ø Self-harm

Ø Aches in all joints

Ø Financial issues

Ø Blood pressure issues

Ø Unemployment

Ø Poor temperature regulation

Ø Not-able to live independently

Ø Cannot maintain full time work/job

Ø Difficult to get social welfare

Ø Rash

Ø Not able to continue driving

Ø Skin conditions

Ø Hair loss

Ø Inflammation

Ø Discoloration of skin

During this seven month project these students worked with

People who have the condition or who care for them.

• Dr Armin Schwarzbach Augsberg Germany

• Primary schools

• Cork & Kerry County Councils & Office of Public Works

• Tick Talk , HSE , • Health Protection Surveillance Centre,

• manufacturers of tick removers

• Pharmacies, GPs

• Infectious Disease Departments in CUH and Mercy University Hospital

• Maine Medical Centre USA Research Team

• Lyme Disease UK , BADA UK , Lyme Disease Scotland, CanLyme, Canadian Lyme Disease Foundation, Lyme Disease Association Australia, Lymenet Europe, Global Lyme Alliance, International Lyme & Associated Diseases Society, Karl McManus Foundation Australia,

• WHO(World Health Organisation)

These students

Interviewed and surveyed patients who are at various stages of the disease.

Survey the community re knowledge of ticks and lyme disease.

Developed material for all homes around awareness and education.

Developed cross curricular pack for pre-school, primary and post primary schools.

Designed posters for the community- notice boards on walking & cycling trails, horse riding and outdoor pursuit centres, playgrounds and picnic areas .

Social Media – Facebook, twitter and instagram .

Designed tick removal pack for first aid boxes.

Designed material for hospitality industry to make people more viligant .

Organised community information event

Building the LymeLight App

What do these students want ?

Our ultimate aim is to set the earliest diagnosis of Lyme’s disease as possible and to ensure that people are able to identify the symptoms , have blood tests offered and analysed in Ireland.

We want to professionally publish our packs schools, home and community. We would like to have a national body such as HSE endorse and distribute same.

We would like to continue to work with Tick Talk Ireland.

Promote and develop our app on Ticks and Lyme disease.

We plan to make recommendations to Oireachtas committees, Health, Environment and Education.

We would like to see an attempt made to change the mind-set of apathy around tick bites through education, videos or TV advertisements . It would be helpful to showcase personalities/celebrities that have experience of Lyme disease, with whom people might identify, who have overcome it or who are dealing with it.

• Sourcing Irish supplier for Irish made tick cards and tick removers or designing and patenting same

• Work with Hire car companies, airlines, hospitality industry to make customers aware.

• Source environmentally friendly repellents

lobby Office of Public Works, county councils to place all weather signage in public places – playgrounds, trails, walks, wooded areas advising of ticks and the importance to check for same

Design tick removal pack for all first aid boxes and have recommendations around same.