Written answers
Tuesday, 22 October 2013
Department of Health
Disease Management
Billy Kelleher (Cork North Central, Fianna Fail)
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560. To ask the Minister for Health if he is confident in the testing procedures for Lyme disease here in view of the fact that many of the cases that tested negative here tested positive when carried out in Europe; and if he will make a statement on the matter. [44587/13]
Billy Kelleher (Cork North Central, Fianna Fail)
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561. To ask the Minister for Health the treatments and assistance available to Lyme disease patients; and if he will make a statement on the matter. [44588/13]
James Reilly (Dublin North, Fine Gael)
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I propose to take Questions Nos. 560 and 561 together.
Since September 2011, Lyme Disease has been a notifiable disease under the Infectious Diseases Regulations. The standard approach to the treatment of Lyme Disease is to follow the guidance laid out in the Infectious Diseases Society of America guidelines on the clinical assessment, treatment and prevention of Lyme Disease. This is accepted as being the most up to date synthesis of best available evidence on the clinical management of Lyme Disease and treatment of Lyme Disease is based upon this guidance.
The acute tertiary hospitals in Ireland have the diagnostic and treatment facilities and personnel for the management of Lyme Disease. In addition, a network of infectious disease specialists is available in all the major centres to provide consultative, expert advice in the management of Lyme borreliosis. I have been advised by the Health Protection Surveillance Centre that there were eight cases of Lyme Neuroborreliosis notified in 2012. Lyme Neuroborreliosis is at the more severe end of the spectrum of Lyme borreliosis and as such it is possible that there may be more people with the milder form of the disease. Given the numbers of cases of Lyme borreliosis in Ireland, I am confident that the facilities available for the diagnosis and treatment of the condition are commensurate with the burden which the disease imposes.
The diagnosis of a case of Lyme Disease can be difficult. The standard approach to Lyme diagnostics is a two-stage approach and involves using a sensitive enzyme immunoassay (EIA) as an initial screening step. However, screening EIA's can be insufficiently specific and can give other false-positive reactions in the presence of various other infections from syphilis to glandular fever. In addition, sera from patients with autoimmune disorders and other inflammatory conditions can also lead to false-positive results. Samples giving reactive or equivocal results in screening tests are further investigated in a second stage immunoblot test. The use of immunoblot testing greatly increases specificity. Using this two stage approach gives a greater degree of certainty around the diagnosis of Lyme Disease.
Jennifer O'Dea
Posted on 24 Oct 2013 3:14 pm (Report this comment)
As the Minister has copied & pasted his response from previous replies I have copied my response to his response from previous replies!
I do worry about the lack of concern when it comes to Lyme Disease in Ireland. Firstly relying on 8 reported cases as proof of it's rarity is not sufficient for several reasons..
1. the doctor or consultant has to think of Lyme disease in their differentials - doctors & I've heard some consultants are still unfamiliar with the fact that Lyme can be contracted in this country & therefore wouldn't test for it. In fact in our surveys we found that 60% of our patients were infected in Ireland & not abroad, showing that it is a problem here & shouldn't be ignored.
2. the symptoms mimic so many other diseases that misdiagnosis can often occur, even agreed by the HPSC who wrote an article on it. In fact the most common misdiagnosis is ME/CFS & there are approx 12000 patients with CFS in Ireland, so how many of those have an infection & not know it or even be tested for it?
3. the tests don't pick up all strains, for example in Ireland strain VS116 was found in 50% of ticks sampled in a study by Prof Gray & this strain has been found in EM & spinal fluid of patients in studies & warrants more testing. Only 3 strains are regularly tested & yet more strains are being identified across US & Europe.
4. the patient does not always exhibit a strong enough antibody response to testing (it can be affected by early treatment for example, however early treatment is vital). You could even have a scenario where a patient was treated early at stage one phase but still continued to develop further symptoms however their test results may never sero convert & so any ongoing symptoms are put down as of mental origin or a depressive illness. In our surveys we found that patients are being diagnosed more & more with depression & anxiety & their physical symptoms are not addressed.
5. the notifiable cases are far too narrow, stage one & two patients aren't recorded therefore you are only recording the tip of the iceberg.
Patients can also find themselves being treated for too short a period such as 2 weeks which may be insufficient for a disseminated condition. This can lead to complications later on which again may be put down to chronic fatigue syndrome or depression/anxiety.
Therefore, it's easy to see that 8 notified cases maybe extremely under reported..
I also feel that relying on a set of guidelines (IDSA)that does not even consider management of chronically ill patients is a disservice to those who are chronically ill, possibly made that way by the lack of diagnosis & treatment early on in the illness. Catch the patient early, they may recover with very little side effects at all, catch the patient late & their prognosis is not so good. We need to broaden the net & do away with restrictive testing & treatment regimes & look at the patient, it is about patient care after all. Interesting when you look at IDSA guideline authors how many actually did studies on sero-negative lyme & persistence of infection & yet seemingly 'forget' this when drawing up their guidelines!