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Archive for the ‘Survey & Petition’ Category

We were very pleased to see more Lyme Awareness across Ireland last week as part of the Tick Awareness Week set by the Health Protection & Surveillance Centre & HSE (May 19-23 2014).

As part of the week leaflets & posters have been updated on the HPSC site, these are information pamphlets produced by the European CDC to help children & travellers learn about the risks of Lyme Disease.

We have also been busy updating our rolling surveys on ticks spotted across Ireland & feedback from patients on their experiences of testing, treatment & sadly the many symptoms associated with the more chronic form of the disease. Survey results can be downloaded in PDF/text format as well as xls chart format. More details below.. – For PDF hit the back button to return to page 🙂

Tick Survey

(PDF Text) Tick Talking Results May 2014

(XLS Chart) SurveySummary_Tick Talking May 2014

To enter newly spotted ticks go to: https://www.surveymonkey.com/s/B3XTJL2

Lyme in Ireland Survey

(PDF Text) Results – Lyme Survey May 2014

(XLS Chart) SurveySummary_Lyme Survey May 2014

Patients who haven’t entered the survey before can add their details using the following link (must be infected in Ireland or infected abroad but living in Ireland).

https://www.surveymonkey.com/s/KV2Z5JS

To maintain your privacy we do not collect any personal information such as name, address or IP address.

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A patient speaks for lyme sufferers across the UK

A lyme patient who is organising a petition to raise awareness of Lyme in the UK has spoken out at this very indepth interview on radio. Learn more on why it is so hard to get diagnosed & treated for this often misunderstood disease.

Read this news article on Denise’s story.

Sign Denise’s Petition here. Or download paper copies in the following formats: PDF / Word

Denise will be presenting her petition to Number 10 Downing Street on May 9th 2012. A peaceful rally will take place outside the Department of Health at the following time & location: time 12:00-16:00 place 79 Richmond House Whitehall London.

If anyone would like to attend there is a facebook page dedicated to the rally.

Good luck Denise, Darren, Annette & Richard, we wish you all the best!

Tick Talk Ireland has lodged a letter of concern in support of the patients. Our concerns cover the following issues:

Table of Contents:

Concern One: ……………………………………………………………………………Recognition Page 2
Concern Two: ……………………………………………………………………………Testing Page 2
Concern Three: ………………………………………………………………………Persistence Page 3
Concern Four: …………………………………………………………………………Co-infections Page 4
Concern Five: …………………………………………………………………………Transmission Page 4
Concern Six: ……………………………………………………………………………Guidelines Page 4

The full letter can be downloaded using the links below:

Letter of Concern
Coinfections UK & Ireland

Lyme Conference – our early bird prices were due to end at the end of March but we have extended this for a limited time. More information on tickets, speaker profiles & agenda are available at: http://www.ticktalkireland.org/lymeconference/

Do you know anyone who enjoys walking? We’re looking for adventurous types to help us to help raise funds for International Lyme Awareness Month in May. We’re looking for folks willing to raise 100 euro or more per person for a 4 hour walk in the Wicklow mountains. (We need a minimum of six to be able to go ahead). An insured mountain guide will lead the way.

If you’re able to help contact us for more information!

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Tick Talking While You’re Walking – Tick Survey Ireland

https://www.surveymonkey.com/s/B3XTJL2

Since May 30 2011 we’ve been asking members of the republic to report on any ticks spotted here in Ireland. As of Dec 31, 2011 a total of 52 people have responded so far.

Results can be downloaded here:

Text results
Chart Results

Here are some of the interesting snippets from our survey:

County of residence of our respondents was as follows:

The majority of our responders (60%) reside in the West of Ireland, followed by 19% in the East, 10% in the Northern/Border counties & 4% in the midlands. 8% of responders though did not specify.

How many ticks were spotted on each occasion?

The majority of our responses (56%) spotted 1 or 2 ticks, 10% reported 3-5, 12% found 6-10 ticks, 6% found 11-20, 4% found 21-40 & a further 13% said they spotted ‘numerous’ ticks on each occasion.

As many types of animal can carry ticks including birds, mice, squirrels, hedgehogs, pets, farm animals as well deer this can increase the number of ticks being carried around on hosts. Smaller birds & mammals are ideal for the smaller nymph ticks, whereas adult ticks would target the larger group of animals. Female ticks can lay 2,000 eggs resulting in large numbers being found in one area. Humans become accidental hosts when the ticks look for a blood meal or can become infected when a pet carries a tick into the house.

Which month were ticks typically found?

The months of June/July were reportedly the most common with 38% of ticks spotted in June & 29% July. 13% of responders indicated they saw ticks throughout all of Spring & Summer.

It is important to note that children’s summer holidays falls at the same time ticks are most active therefore good prevention measures are needed both in the garden & whilst out playing or walking. Ticks can survive winter conditions if plenty of leaf litter is available on the ground. Very icy temperatures can knock back their numbers; however they are able to survive if there is snow on the ground which can act as an insulating layer.

Ticks prefer damp areas as they can dehydrate rapidly, so would typically be found in forested areas, tall grass that hasn’t been trimmed back during the summer, or autumn/winter leaf litter. Tips such as keeping grass closely cut during the summer, clearing leaf litter & trimming back edges of garden areas should help to prevent ticks coming into your area. Also use DEET on humans & tick repellants on animals before going out walking. Tucking trousers into socks whilst out rambling & regular tick checks can also go a long way to minimize the risk of tick-borne infections. Tick twisters are available on our site as well as tips for correct removal.

Enter the location your tick was found (by county)

67% of ticks were spotted in the West of Ireland, 15% in the East, 12% in Northern/Border Counties, 4% in the Midlands & 2% in Northern Ireland.

The most common area for ticks was an overwhelming 27% in Galway, 13% in Cork, 12% in Kerry, 10% Donegal & 8% in Mayo. The remainder were found (in ascending order); Wicklow, Wexford, Clare, Tipperary, Laois, Waterford, Sligo, Offaly, Kildare & Northern Ireland.

Which type of landscape were ticks found?

52% of ticks were found in tall grasses, 23% in private gardens.

The rest were found in forested & lakeside areas, heath land, national parks & sand dunes. Some reports of ticks were found on farms, public parks & in leaf litter, with some ticks being found in the house carried in by family pets.

What was the activity at the time of the bite/or when ticks were spotted?

50% of ticks were found whilst walking, 17% whilst gardening.

The rest were found whilst camping, farming & hunting. There were some reports of children picking up ticks whilst out playing or some ticks were found on return from brownie or scout meets.

Where was the tick found? (i.e. pet, adult or child?)

54% of ticks were found on adults, 33% on a dog & 21% on children.
Some reported ticks found in pet beds, in carpeting or on the family sofa.

Was the tick attached when found?

92% of people reported that the ticks were attached to the skin when found (ie embedded).

8% reported that the tick was found crawling over the skin (but NOT embedded).

46% of our respondents who had an embedded tick noticed that the tick was engorged when found, which indicates the tick has been feeding for some time. This greatly increases the chance of transmission of Lyme Disease if the tick was in fact infected with Lyme causing (borrelia) bacteria.

How was the tick removed?

46% of people used fingernails to remove the tick, 34% used tweezers, 4% use tick twisters, 2% asked a GP or nurse to help remove the tick & 2% asked a vet for assistance..

The remainder used Vaseline or nail varnish to remove the embedded tick. A cotton thread was also used which is handy tip if tweezers or a tick twister is unavailable. Loop the cotton thread around the head of the tick close to the skin & pull upwards slowly, making sure to remove the head cleanly.

NB: For correct tick removal please go to http://ticktalkireland.org/ Incorrect removal can increase your chance of infection

Please find below a few places that were mentioned in our tick survey:

In Donegal a resident found approx 10 ticks throughout the months of May, June & July. Ticks were found on 2 adults & pets as well as being brought into the house
40 ticks were reported as being spotted in Ards Forest Park, Donegal during the month of July
A child was bitten by a tick in Country Donegal after a day out on the beach & countryside. The tick was engorged when found in June
A tick was found on a child after visiting a national park in Armagh in May
8 ticks were found on an adult & a dog whilst gardening in Sligo (June 2011)
A dog walker has reported more than 20 ticks found whilst out walking in Ofally, during the months of May & June
2 or more ticks have been seen every month in a garden in County Laois (2010/2011)
3 were found in Waterford whilst out gardening (July 2011)
A tick was found on a child after visiting Bray Head in County Wicklow in June
One walker reported ‘lots’ of ticks spotted whilst walking in Mayo in July, some ticks were found attached to the skin
Numerous ticks were found in a forested area in Ballinrobe area, Co. Mayo during the months of June & July
A group of 21 travelling in the Burren area & Aran Islands reported spotting 4 ticks (July 2011)
10 ticks were found on a sheep farm in Tipperary (June)
A child on a farm in County Clare had an engorged tick (June)
More than 15 ticks were found on a dog after exploring land in County Cork (Feb 2011)
A resident in County Cork has found ticks many times in the garden throughout 2000-2011 & have been bitten on several occasions
30 ticks were found whilst camping in Killarney, Co. Kerry. Some ticks were engorged when found (June 2011), 2 more were reported in Killarney in Oct 2010
A 4 year old child was bitten by a tick in County Kerry whilst out playing in June
A walker & pet owner reported several ticks found in Ross Island & Killarney National Park, Co. Kerry during the months of May to August 2011. Some ticks were attached when found
A walker found numerous ticks in Waterville, Kerry during the summer months among ferns in a mountainous area
Another child was affected whilst playing in a garden in Galway (June)
Several ticks have been found in County Galway whilst gardening at various times through the year
A resident in West of Galway is reporting 2 or 3 ticks found weekly whilst walking their dog since April 2011
A walker found 12 ticks on themselves & their family pet after a trip to Portumna Forest (Co. Galway) in July
Inisheer (Aran Islands) Galway: 10 ticks spotted whilst out camping (July 2011)
Another 6 were found by a resident whilst walking in gardens in West Galway in June & another reported more than 10 ticks found in humans, pets & in the house in Galway in May

Vet Study

http://www.surveymonkey.com/s/L395BSB

In the summer of 2011 we asked vets to report on how many ticks were seen on companion & farm animals in Ireland. We received only 7 responses; however a summary is available as follows:

How many ticks were found on each occasion?

57% found between 1-2 ticks
29% found between 3-10 ticks
14% found between 21-30 ticks

What type of animal were ticks found (including pets as well as farm animals)?

86% ticks were found on dogs, the remainder on a cat & cattle

What was the reason for the vet visit at the time?

57% of pets were brought in for routine vaccinations when the ticks were reported
29% of owners had bought the animal in for tick removal
14% animals brought in during ill health

If ill-health, which tick-borne illness did you suspect?

The vet suspected louping ill / babesiosis & ehrlichiosis, this was not confirmed by testing however at the time of the survey

In Summary
The survey identifies that vets & the general public are spotting many ticks at one time, for instance 56% our public responders spotted 1-2 ticks, with the rest spotting many more. Similarly, 57% of our vet respondents spotted 1-2 ticks on each occasion, whilst the remainder spotted more.

It is important to note from both the general public & vet studies that dogs are a greater risk for bringing ticks into close vicinity to humans. They like to brush past tall grasses & ticks can be easily latched in their fur. Although there are some great tick repellants products available, they are designed to repel not actually kill the ticks & some are less effective than others at deterring them, therefore extra vigilance is required when walking your pet in the countryside. If a tick does latch onto the dog it may be brought into your home & land on bedding, furniture or feed on the dog & drop off into the garden – an added danger when an adult tick is ready to lay its eggs. Routine tick checks will help to minimize the risk of tick-borne infections being passed onto you or your dog. Signs of Lyme infection in pets can include lameness & fatigue. For details on how to protect your family from tick-borne infections, check out our downloadable leaflet or feel free to contact us for a bulk order of leaflets for your local vet, library, hospital, church, walking or sports club. The HSE also has tips on how to best protect the family from Lyme Disease. The true incidence of Lyme Disease is currently unknown in Ireland; from September 2011 it has now been classed as a notifiable disease which will be helpful in tracking suspected numbers across Ireland.

We have published some recent figures from our Lyme in Ireland survey (see below) showing how the illness can affect patients & the problems they face with regards to testing & treatment.

Lyme Disease in Ireland – Survey

http://www.surveymonkey.com/s.aspx?sm=qqrP_2bn_2bqPQSryRKHMTyJ1w_3d_3d

In 2009, Tick Talk Ireland produced a survey to Irish sufferers.

To qualify, the respondent must be a Lyme sufferer who is:

* Living in Ireland – infected by Lyme here or abroad or
* Not living in Ireland – but infected within Irish Counties

27 people replied to the survey during the months of July and August 2009:-
59 people replied to the survey from July 2009 to December 2011:-

Results can be downloaded here:

Text results
Chart results

All our surveys are still ongoing, updates will follow periodically!

Tick Talk Ireland, Charity 19588: web: www.ticktalkireland.org

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Lyme Surveys

The following are surveys about Lyme disease. If you fit the criteria please take the time to complete any of these surveys:

Tick Talking While you’re Walking Tick Survey: Click here

Vet Study (for veterinarians to fill in) – Click here

Tick in Time Survey (for anyone travelling to national parks or forestry trails in Ireland) – Click here

Lyme in Ireland Survey (for those living in Ireland & infected here or abroad, OR living abroad & infected in Ireland)- Click here


Survey Results So Far
– View the survey results we have gathered so far.

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Members of the Facebook Group, Tick Talk Ireland are making a call to the Health Protection Agency to make Lyme Disease a notifiable illness.  Our reason for this recommendation is that there is little support and knowledge available to Lyme disease patients. Some people have been infected overseas and some have been infected here in Ireland. The overwhelming response from talking to these patients is that there is little recognition among the medical community, on the best way to diagnose and treat the disease. This leaves many patients having to seek advice by private means, often abroad which places an additional burden on people who already ill.

Due to the large farming community found in Ireland and also the attraction of Ireland’s beautiful land and seascapes to overseas visitors, we need to do more to raise awareness and protection. By making Lyme disease notifiable we could be placing greater importance on quicker and more reliable diagnosis amongst the medical population and help prevent an ever deepening health and financial (due to ill health) crisis.

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What is Lyme Disease? Lyme disease is a tick-borne illness transmitted through the bite of a tick. Symptoms in the early stages of the disease can include a bulls eye rash, flu-symptoms and a fever. If you notice these symptoms go to your GP without delay and explain that you were bitten by a tick. Some patients may remain asymptomatic and carry the disease for a number of years symptom free. However late stage Lyme disease can crop up years later with debilitating symptoms, including profound fatigue, tremours, weakness, dizziness, nausea, joint & muscle pain, sore throats, tingling, brain fog and headaches. The symptoms greatly mimic those of ME, MS & Parkinson’s Disease.

The best form of treatment is through antibiotics. The longer you have been infected the harder it is to eradicate. This is why we are calling for quicker recognition and treatment of the disease.
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**Update September 2009:

Thank you to all those who signed our petition:

“Make Lyme Disease a notifiable illness in Ireland”

The petition was submitted to the Minister of Health 2nd September 2009. I have also submitted to Ms Harney results of our survey – a summary of these results can be obtained at the following link. The reply from the Minister of Health of 10th September is also posted in the link below!

http://www.facebook.com/topic.php?topic=9909&uid=44960753282

Results of Survey

The survey is still open and we will continue to review answers as they come in (details below!)

*Try out our New Lyme Disease Survey in Ireland
(All replies are anonymous and no contact details are required)

To qualify you must be a Lyme sufferer who is:

* Living in Ireland – infected by Lyme here or abroad or
* Not living in Ireland – but infected within Irish Counties

Lyme Disease Survey in Ireland

Thank you for visiting us at Tick Talk Ireland!

Come & see us on Facebook today!

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**Update April 2011:

Tick Talk Ireland submitted a letter of inquiry to the new Minister of Health, Dr James Reilly, regarding making Lyme a notifiable illness in the new government. Please find below his reply:

4th April 2011:

The Minister for Health, Dr. James Reilly, T.D., has asked me to thank you
for your recent letter concerning the notifiable status of Lyme Disease.

The Minister has asked me to inform you that as part of a review of
Infectious Diseases Regulations being undertaken in the Department, it is
proposed that Lyme Disease will be included as a notifiable infectious
disease under proposed new legislation.

This is excellent news as A. Lyme is a serious threat to the health of members of the public, their pets & their children as well as to forestry & outdoor works & B. more sufficient monitoring can take place of cases across Ireland showing truer numbers reported by GP’s rather than numbers reported by labs.

Using Lab results for some conditions can be very useful for tracking disease, however Lyme is different in that it can take several weeks for Lyme antibodies to show up in tests & in late Lyme a depleted immune system can mean false negative results.

It is estimated in the US that numbers being reported by labs should be multiplied 10 times to get a more accurate number of Lyme cases. We hope that through the input of GP’s & consultants that more accurate reporting can therefore take place, at least until more sensitive testing is made available.

This test in the EU is currently under development 🙂
http://www.hilysens.eu/the_project

The aim of HILYSENS is to develop a novel lab-on-chip diagnostic tool to improve clinical diagnostic, disease monitoring and treatment of Lyme Disease by enabling specific and sensitive detection of the human serological response against its causative agent: Borrelia burgdoferi. Lyme Disease is the most common tick-borne infection in Europe with around 85,000 new cases per year and its incidence is increasing due to climate change. Current laboratory diagnostic methods lack sensitivity and specificity to detect early cases as well as late manifestations of the disease such as chronic or autoimmune-related infections. For this reasons, disease incidence is underestimated as many cases go mis- or undiagnosed. Late, delayed, or inadequate treatment can lead to serious symptoms such as neuroborreliosis or arthritis, which can be disabling and difficult to treat.

We will keep you posted as we hear more about the updated legislation xx

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