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!
Jennifer O'Dea
Posted on 24 Oct 2013 3:14 pm
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!