Our response is as follows:
Lyme disease (the big debate!) 3rd March 2015
I was forwarded a copy of the discussion between Minister of Health & Children & Dan Neville T.D. regarding Lyme disease. We are encouraged that a taskforce is being set up, this was promised some time ago but I understand Ebola virus set things back. If it’s possible to find out who those taskforce members are we would be very interested. We also feel it important that a patient representative is invited to the board.
I wanted to send on the following response regarding testing & treatment:
*The discussion on Lyme between Dan Neville TD & Minister of Health Leo Varadkar started off positively until we came onto the subject of Chronic Lyme Disease, the Minister suggested there is little evidence in medical journals to support this. I’d like to point out that some of the IDSA 1) authors themselves published articles on Chronic Lyme in the past, indeed, a lot of studies in our chronic lyme section 2) are obtained from peer reviewed scientific data, some suggesting that long term treatment may be warranted, in case of persistent infections.
*The NIH prolonged 3) antibiotic studies being referred to are the three which they usually quote which have since been discredited by statisticians, for instance, one of the studies used end study quality of life criteria set too low 4), so that even well people would struggle to reach it!
*Regarding Lyme being a notifiable illness, this is for stage 3 Neuroborreliosis only, (easy to say that numbers are very low when you’re not measuring the whole picture). We mentioned in a meeting with the HPSC Jan 2013, that using stage 3 criteria wouldn’t catch those who are misdiagnosed with another illness (our studies 5) show that patients may be told they have depression or ME & therefore not tested until much later – we need to be better in diagnosing patients sooner), plus those detected at early rash stage (i.e. stage one) will not be recorded, but they are still relevant, as this shows actual numbers within Ireland. Plus, as Dan indicated, does not include overseas tested patients. As 2 tier antibody test results only are accepted, T cell testing, often used by patients overseas, would fall outside the scope of notifiiable cases.
*It also doesn’t accept the fact that patients don’t always test positively using antibody testing, we have ample studies 6) on our site reflecting this. I have seen tests say on them ‘a negative does not rule out current infection, clinical correlation is essential’. I can send copies of this on request, this fact is rarely passed on to the GP, so patients may be told if they’re negative they don’t have an infection at all. Meanwhile I’ve had other patients be told that their positive was a ‘false positive’ adding another spin to the tale.
*Whilst testing & recognition of symptoms is an issue, patient diagnoses will be missed which creates a higher chance of a chronic infection, an infection which is then much harder to treat. Due to the restrictive guidance of the IDSA, doctors are often unwilling to treat a patient leaving them sick for a very long time. Whilst it’s tempting to think that a sugar pill or placebo would clear a Lyme infection I would be very surprised if this would happen, given that the bacteria itself is known to change form so it can evade the immune system & is much smarter 7) than many other bugs out there.
*Sadly the cost of Lyme disease can be damaging to society, a Study in Scotland 8) states:
‘295 patients had evidence of early Lyme disease and 31 had late Lyme disease symptoms. Based on these figures, the total annual cost for Lyme disease, when projected to the whole of Scotland, is estimated to be significant at £331,000 (range £47,000–615,000). The range is inevitably wide because it was not possible to document complete clinical and management histories on individual patients.
In addition, some late Lyme disease sequelae will require management for more than 1 year, and costs are also identified that could justifiably be included for all the other patients who tested negative for Lyme disease. These data raise the question of whether there is sufficient focus on prevention and the best management of this disease.’
Therefore, I think it’s vital to
A: start tracking all stages of the disease not just stage 3 so we can get an idea of actual numbers & actual costs across Ireland,
B: raise awareness by placing warning notices in national parks & major nature trails (I brought this us up during our HPSC meeting & was told they had budget constraints – surely the cost of prevention is cheaper than long term management!)
C: raise more awareness that a negative does not rule out infection & clinical correlation is essential. Plus GPs/consultants should be encouraged to go beyond restrictive practises of the IDSA guidelines for longer term ill patients where this is warranted.
(Please note that some patients report getting just 10-14 days of treatment, which may be too short even for stage one of the disease).
D: since the retirement of Dr Eoin Healy UCC & Prof Gray UCD, Ireland is left without updated scientific data. It would be encouraging to see Universities involved, in getting more recent studies out there across Ireland 9) looking at tick numbers & bacterial load. This can help assess the current dangers, for Irish residents & visitors to the country.
“Encouraging awareness, prevention & treatment of Lyme Disease (Borreliosis) in Ireland.”