Organisers of the State's first resource centre for Lyme disease had to change the venue for the launch after the Mater Hospital objected to the use of its premises for the event.
The venue was moved at short notice to a hotel near Croke Park on Monday morning after organisers were told the use of hospital premises was “not permitted”.
Prof Jack Lambert, an infectious diseases consultant at the Mater who has established the centre, described the decision as "political".
“They’re saying, ‘you can do this on your own, but we want nothing to do with it,’” Prof Lambert told Fianna Fáil TD Marc MacSharry, who had asked why the venue had been changed.
The hospital is understood to be unwilling to host a service for which it has neither budget nor remit.
Prof Lambert, who admits other infectious diseases specialists in Ireland do not agree with his views, has established the centre with the help of a private donation. It aims to provide a focal point for patients with Lyme or who are at risk of it, education and training for GPs and, in the future, a patient hotline.
Lyme disease is a bacterial infection spread to humans by infected ticks. The initial symptom is often a “bull’s eye” red skin rash. If left untreated, further symptoms follow including a fever, muscle pain, joint swelling and temporary paralysis of the facial muscles.
The HSE quotes an estimate of about 100 to 200 cases a year but patient groups and some doctors says this is too low.
Unrecognised
Tests currently used in Ireland miss many sick patients who are then told to “live with it”, Prof Lambert told the meeting. Tick bites frequently go unrecognised as a potential cause when a patient’s symptoms are being considered, he said.
“Lyme is last thing on the radar screen of doctors in Ireland when it should be the first one, given how many people are involved in outdoor activities.
“If the patient is sick and not getting better and we don’t know why, we are missing something. Don’t blame the patient: question the science and the failure of the healthcare system to identify what’s causing their symptoms.”
Prof Lambert believes doctors should rely on a clinical diagnosis to identify cases, as early diagnosis will prevent later complications.
Mr MacSharry, one of a number of TDs and MEPs who attended the meeting, said the default position of the medical community seemed to be “there’s nothing to see here” and that treatment with antibiotics for longer than two weeks could cause serious liver damage.
The system was using considerable resources fighting “50 different health conditions rather than the true cause”.
US author Jenna Luche Thayer told the meeting the World Health Organisation this year revised its disease classification codes to take account of more complications of Lyme disease.
Though this change would not be fully rolled out until 2022, it could be used today to overturn “outdated policies and practices that deny valid diagnostics and treatment options for Lyme patients”.
Prof Lambert and Ms Luche Thayer will address the Oireachtas health committee on the issue on Wednesday.
