Living with Lyme Documentary
We have exciting news of an upcoming documentary, ‘Living with Lyme Disease’ which will be broadcast on Tuesday October 11th 2016 at 2100hrs(9pm) on IrishTV, Channel 191, Freest 400, irishtv.ie.
This will be available in Northern Ireland and The UK & will also be going out on other channels worldwide on Irish TV.
The documentary was put together by Lyme sufferer James Pembroke & Irish TV’s Brian Hurley. An interesting interview by Nicci St. George Smith, another Lyme sufferer is available here, she asked the guys what inspired them to put together the documentary:
Concerns over Killarney
As can be seen in the news article below, Lyme is a serious concern here in Ireland as ticks are abundant. A father recently described how his young children were bitten in Killarney National Park, one of the high risk areas in Ireland & the father is calling for warning signs to be erected in National Park areas. http://www.killarneytoday.com/father-wants-alert-signs-erected-in-national-park
As indicated by this recent news article ticks are becoming an increasing worry in Killarney: http://www.killarneytoday.com/ticks-in-the-park-could-run-to-billions/
This recent scare among juvenile rowers shows that anyone young or old can be affected: http://www.killarneytoday.com/juvenile-rowers-being-treated-for-lyme-disease/
A Tick Talk Ireland volunteer was successful in getting a warning sign put up at Killarney Children’s Playground, however it has been a struggle to get notices placed in National Parks. The dept of the Environment in communication with them said it was the role of the Health Protection & Surveillance Centre (HPSC), meanwhile the HPSC have designed leaflets & posters to warn the public but indicated they are intended for online use only with no plans to print them.
Sadly this means folks visiting high risk areas are just not being warned sufficiently enough to check themselves during & after walks & to take preventative measures (such as tucking trousers into socks, sticking to footpaths & staying away from grassy areas, applying repellents on the family & pets, plus doing a full body check once reaching home).
Of course, these things would be obvious once you know about the risks of tick bites but not being warned in the first place means folks wouldn’t even think to protect themselves.
Meanwhile, Lyme sufferer Nicola Lavin in this TV interview explains just how devastating a missed diagnosis can be (Pls note this clip may only be available for up to a month): //www.tv3.ie/3player/show/800/113009/1/Sunday%20AM
Killarney Risk Map
Valerie Heffernan, during her MSc at University College Cork did a thesis entitled “The application of spatial analytical approaches to determine Lyme disease areas.”
As part of this she put together an excellent map of high risk areas in Killarney National Park (PDF).
Valerie says ‘The tick habitats were detected using satellite imagery, recorded on the 19th of April 2015, the 11th of July 2013 and the 7th of September 2014 which were acquired from the Landsat 8 (OLI) sensor. These images produced a clear overview of vegetation density in the National Park during the spring, summer and autumn months. This was followed by analysing water polygons, soil type, height data and geology within the Killarney National Park boundary. Buffers were created around the water polygons and merged with coniferous and mixed forest classes to indicate mammal habitats and therefore the high, medium and low risk areas of contracting Lyme disease.’
Valerie says ‘I decided to do a map on this topic after my sister in law became ill with the disease when visiting Connecticut, USA. I feel that the best way to prevent contracting the disease is through information. I was surprised to find there were no other Lyme disease risk area maps in Ireland and decided to create my own using satellite imagery and image processing of the National Park. I hope that the information I have provided can help reduce further cases of the disease.’
It’s worth mentioning though that ticks travel far & wide (their little legs don’t take them far but they do hitch rides on deer, humans, farm animals, domestic animals & birds so they can be found far & wide across Ireland) – hot spots can occur in regions where there is a large influx of wild animals, domestic animals, humans & birds in one place (ie national & recreational parks).
To see other areas that are affected check out our Tick Talking While You’re walking Survey (this doesn’t indicate whether the ticks are actually infected, but does show where they are being regularly spotted & the times of year they are most often reported)..
Official Figures way off??
Meanwhile, back in May 2016, the HPSC published the latest notifiable Lyme ‘neuroborreliosis’ cases:
As you can see, the numbers are quite small. It’s quite difficult to pin down accurate figures in Ireland, this can be due to the following reasons:
A. the doctor is not familiar with the presenting signs at various stages of the disease & therefore Lyme may not even be considered
B. the patient has early Lyme which may have been treated quickly to prevent neurological Lyme but they are still a case & should be recorded (notifiable status curently ONLY records neurological cases)
C. a patient’s main presentation may not necessarily be neurological
D. the criteria for official notification of cases (pg 55 PDF) require 2 tier testing methodologies, which has been problematic for some as sero-conversion can be incomplete (see our article on Issues Surrounding Testing PDF for more details)
E. some patients who don’t emit enough antibodies may have more success using T cell (antigen type testing) from overseas, however these cases may not be counted, as they are outside the 2 tier (antibody) test system
F. clinically diagnosed cases (where tests are negative but suspicions still high based on history of tick bites, history of bulls-eye rashes etc) are also not recorded
G. there is a concern over whether the current secondary test (Western Blot/Immunoblot) which is offered in Porton Down England is excluding tests for borrelia garinii, which is the strain most associated with neuro borreliosis (there are cross over of symptoms between other strains but this is the one most often linked with neuro Lyme).
Considerable Underestimate says HPSC
In this article the HPSC say ’50 cases per annum would be a considerable underestimate’.
I do hope that improvements in testing would help us track cases much more efficiently & better still, why not record all stages of the disease, not just the more disseminated neuro cases?
Please note that Lyme is progressive, however some can develop symptoms slowly & some much more quickly. This may depend on strain, state of immune health, number of co-committing infections & so on. The difference in presentation can therefore lead to confusion when seeking a diagnosis as a doctor may remember one case & see a completely different set of symptoms in another!
A look at Irish Studies
To see Irish related studies check out the following:
A few years ago University of Galway published a Lyme map of cases in the West of Ireland. They showed clusters of cases particularly around the Galway region & Connemara. It would be really good to see more studies taking place, some looking at infection rates in ticks & others looking at infection rate in humans (sadly since Prof Gray retired from Univ College Dublin we simply haven’t had any up to date studies – a prior study in Killarney for instance showed tick infection rates from 11-29%, just where we are now in Killarney & indeed nationally is anyone’s guess.)
Meanwhile we look forward to seeing the docmentary ‘Living with Lyme’, it shows real life struggles of people seriously affected by this insidious disease & will hopefully be an eye opener to many…