"These patients have been treated like lepers. The real-life experience of Lyme sufferers is truly harrowing."
Following the huge turnout at the Lyme Disease rally at the Dáil last Wednesday, activists raised awareness for the disease and its causes, with a cross-party action group being established by TDs in coordination with Lyme Disease activists and a consultant specialist at the Mater Hospital.
A number of the Donegal Lyme Disease Support Group attended to show their support alongside Tick Talk Ireland.
Representatives of Lyme Disease support groups met with Health Minister Simon Harris to discuss increasing awareness amongst GPs and the general public of the debilitating disease.
Following the meeting, it was announced that a cross-party action group would be established between political parties, Tick Talk Ireland, patients, advocates, and Consultant Specialist in Exotic Disease Dr Jack Lambert.
The key aims of the group would be to secure acceptance of the existence of Lyme Disease as a major problem in Ireland, the introduction of Elispot and other appropriate forms of testing accredited and accepted elsewhere, an education process for all primary care physicians on Lyme, and a public awareness campaign on Lyme.
This cross-party action group was announced by Sligo-Leitrim TD Marc MacSharry, who says that “these patients have been treated like lepers. The real-life experience of Lyme sufferers is truly harrowing.”
Speaking to Donegal Woman, Deputy MacSharry says that there was an excellent attendance at the presentation given by Dr Lambert at the Dáil, and was inspired to spearhead the new working group alongside Deputy Eamon Scanlon having worked with Lyme Disease activists for several years.
The key aim, he says, is to get Ireland “up to speed” with the testing and treatments available in other countries such as Germany, and to encourage the Government to acknowledge this “nationwide issue”.
“We need the acceptance that there is a problem, we need to embrace the testing procedures that are out there, and we need to implement the appropriate treatments.”
“When patients are told it’s all in their mind it is insulting when the symptoms are directly caused by Lyme Disease.”
“We need to get up to speed with the testing and treatment that we urgently require and want, and it will be cost effective to provide.”
Downings woman Roisin McGeever told Donegal Woman that she too was told it was psychological when tests came back clear, despite suffering from stroke-like symptoms, heart palpitations, and Bell’s Palsy.
The tests made available in Ireland are inadequate, and it was only when a specialist sent her tests to Germany that she was told it was Lyme Disease, 17 years after contraction – suffering for almost two decades without a diagnosis.
Donegal Woman contacted the Department of Health regarding plans for raising further awareness of the disease.
In a statement, they said that since 2013 there has been a Lyme Awareness Week at the beginning of tick biting season.
“The purpose [of the awareness week] is to draw attention – particularly in the media – to Lyme disease and the ticks that can spread this disease. This year Lyme Disease week took place on 15 – 22 May,” the spokesperson said.
“The literature on the Health Protection Surveillance Centre website points out that that campers, walkers and certain occupational groups such as forestry workers, conservation workers, deer cullers and farmers are at particular risk of exposure to ticks (and therefore LB). That said, anyone walking or hiking in the countryside is at risk of biting ticks.
“The ticks are present in both urban and rural environments and are active from spring to autumn. Lyme cases tend to appear in Ireland with greater frequency after April, hence the choice of this time of year for Lyme Awareness Week.”
The most common symptom of Lyme disease is a red skin rash that looks similar to a bull’s eye on a dartboard, but if left untreated the patient may develop a high temperature, muscle pain, joint pain, and neurological symptoms such as the temporary paralysis of the facial muscles.
According to the HSE, if diagnosed in the early stages between 4-6 weeks after contraction it can be treated with a short course of antibiotics, with most people recovering in a matter of days. Even if more serious symptoms develop, antibiotics can still help, although it may take significantly longer.
“The HPSC provides guidance on protection against contracting Lyme borelliosis. The best protection is to prevent tick bites, when walking in grassy, bushy or woodland areas, particularly between May and October:
- Arms and leg should be covered; wearing long trousers tucked into socks or boots, and long-sleeved shirts with cuffs fastened is advised. Shoes or boots should be worn rather than open-toed sandals.
- The use of insect repellent on clothes is recommended, or on limbs if it is not practicable to cover up. DEET or permethrin (insect repellents) can be used – advice can be obtained from pharmacies.
- Skin and clothing should be inspected for ticks every three to four hours and children’s skin and clothes checked frequently.
- Ticks should be removed as soon as they are seen attached to the skin. Further advice on tick removal can be obtained from the HPSC website.
- It is not recommended that antibiotics are given to prevent the transmission of Lyme disease following a tick bite.
- Only if the area becomes inflamed may treatment be required; and advice should be sought from a doctor.
- People should see their doctor if they develop a rash or become unwell with other symptoms, letting the doctor know of exposure to ticks.
The Department of Health also says that details of symptoms and treatments can be found on the HPSC website (www.hpsc.ie) and the HPSC produced a leaflet on “Protecting Yourself Against Tick Bites and Lyme Disease” which is available for the public to download.
For GPs, a Lyme Disease Expert Day will take place on Saturday the 28th of October between 9am and 12:30pm at the Catherine McAuley Education Centre, Nelson Street, Dublin 7.