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mayThe Irish Health Protection & Surveillance Centre declared the week of April 27th Lyme Awareness Week for 2015. Tick Talk has added some new items on our site as follows-hope you enjoy:

New Article – Health & Safety in the Countryside

https://ticktalkireland.files.wordpress.com/2015/04/health-safety1.pdf

New Article – Issues Surrounding Antibody Testing

https://ticktalkireland.files.wordpress.com/2015/04/issues-surrounding-testing.pdf

New Article – Does Lyme Exist in Ireland?

https://ticktalkireland.files.wordpress.com/2012/04/does-lyme-exist-in-ireland.pdf

New Kindle Booluna front coverk – Adventures of Luna & Dips

(released 2013 to schools) now available on kindle worldwide 😉

http://www.amazon.co.uk/Adventures-Luna-Dips-Jenny-ODea-ebook/dp/B00VS46RIQ

Updated Article – Newcomer’s Guide for 2015

https://ticktalkireland.wordpress.com/newcomers-guide/

Updated Links in April

Irish News: https://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/

Irish Studies: https://ticktalkireland.wordpress.com/irish-related-studies/

Celebrities: https://ticktalkireland.wordpress.com/facebook-contents-page/celebrities/

IDSA Review: https://ticktalkireland.wordpress.com/facebook-contents-page/idsa/

Blood Testing: https://ticktalkireland.wordpress.com/lyme-links/testing/

Tick Testing: https://ticktalkireland.wordpress.com/facebook-contents-page/tick-testing/

Paediatric Lyme: https://ticktalkireland.wordpress.com/lyme-links/paediatric-lyme/

Prophylaxis: https://ticktalkireland.wordpress.com/facebook-contents-page/prophylaxis/

Prevention: https://ticktalkireland.wordpress.com/facebook-contents-page/prevention/

Updated Links in March

Symptoms Guides: https://ticktalkireland.wordpress.com/facebook-contents-page/symptoms-guides/

Transmission: https://ticktalkireland.wordpress.com/facebook-contents-page/transmission/

Lots more info in our links section or in menu down right hand side. Our main site contains more basic info for those new to Lyme disease – includes section on prevention, tick removal, symptoms & testing. If anyone sees a tick this year don’t forget to help us by completing our surveys (Tick Talking While You’re Walking) at: http://www.ticktalkireland.org/surveys.html

Have a Safe & Happy Spring & Summer. Keep Safe!

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Tick Talk Ireland Logo by Pauline Reid

Useful links & what we’ve been up to!

*For anyone new to the world of Lyme, download our newcomers guide at: https://ticktalkireland.wordpress.com/2013/08/01/help-for-newcomers/

*Suspect Lyme? See our post for more information…
http://www.ticktalkireland.org/suspectlyme.html

*Chronic Lyme – truth or dare? Check out these links to make up your own mind! https://ticktalkireland.wordpress.com/lyme-links/chronic-lyme/

*IDSA guidelines authors are of the opinion that Lyme cannot persist & seronegativity is an unusal occurrence right? Not so! Check out this link for more! https://ticktalkireland.wordpress.com/2010/07/28/persistence-seronegativity/

*But won’t those patents really tell us what’s going on? Makes for interesting reading anyway! https://ticktalkireland.files.wordpress.com/2011/10/a-look-at-patents1.doc

*Lyme is just one big Myth! Let’s bust them once & for all..

https://ticktalkireland.wordpress.com/2011/06/01/dispelling-the-myths/
https://ticktalkireland.wordpress.com/2012/08/24/mythbusting/
https://ticktalkireland.wordpress.com/2014/08/18/hidden-in-plain-sight/

*Check out our compendium (30 pages of studies, newspaper, radio & TV interviews) all related to Lyme in Ireland (current to Dec 2014): https://ticktalkireland.files.wordpress.com/2014/01/ireland-articles1.doc

*or our Lyme links section for more recent updates https://ticktalkireland.wordpress.com/lyme-links/

*So then, what treatments do you recommend. As we’re not doctors we can’t recommend any but we can give ya all the links ya need!! https://ticktalkireland.wordpress.com/lyme-links/lyme-treatment/

*Burrascano Treatment Guide (PDF)…

http://www.ticktalkireland.org/Dr%20Burrascanos%20Guide%202008.pdf

*Or for natural antibiotics check out our link at:

https://ticktalkireland.wordpress.com/lyme-links/alternative-treatment/

*For tips on herxes & flares why not check out:

https://ticktalkireland.wordpress.com/2014/10/23/herx-rattle-roll/

do you want lime with that?!

*So what can you tell me about testing? There is no 100% accurate test for Lyme however the ‘gold standard’ is the 2 tier test which can have its problems. Alternative test info is available on our site at:

http://www.ticktalkireland.org/testing.html

(or check out our newcomers guide -see first link at top of page)

*Our blog site has extensive information on the differences, strengths & weaknesses of various methods of testing suitable for scientists, students, medical staff as well as curious patients!

https://ticktalkireland.wordpress.com/lyme-links/testing/

What has Tick Talk been up to?

Articles…….

Various articles written by Pauline Reid or Jenny O’Dea of Tick Talk Ireland http://www.ticktalkireland.org/articles.html

FAQs…http://www.ticktalkireland.org/faq.html

Books…….

Over 2,500 copies of our new book ‘The Adventures of Luna & Dips’ was distributed among schools luna front coverin Ireland together with a teacher’s pack. A free copy of the book & poster was sent to libraries in some parts of the country.

Order ‘The Adventures of Luna & Dips’ on Kindle (New Apr 2015)

http://www.amazon.co.uk/Adventures-Luna-Dips-Jenny-ODea-ebook/dp/B00VS46RIQ

Accompanying Poster

http://www.scribd.com/doc/138974973/Luna-Poster?secret_password=1fnt40cczjf4bpwg4g1k

Conference June 2012….

pic by Mary Smyth

Irish Lyme Conf 2012: pic by Mary Smyth


Irish Lyme Disease Conference Dublin June 2012
http://www.ticktalkireland.org/conferencereview2012.html

We also did talks for various groups including IOSH, Lisheen Mines & Deer Hunting Groups..

Leaflets & Handouts….

Portumna larval 2
Irish Lyme Leaflet

http://www.ticktalkireland.org/lymeleafletsept2013.pdf

Information Handout
http://www.ticktalkireland.org/handoutforhealthtalknov2013.pdf

School Info Sheet
https://ticktalkireland.files.wordpress.com/2012/06/teachers-notes1.doc

Download Symptoms Chart
http://www.ticktalkireland.org/symptomschart.html

Letters…..

Letter to the Medical Card Review Team June 2014
https://ticktalkireland.files.wordpress.com/2014/06/medical-card.pdf

Letter of Concern to the HPSC, Minsiter of Health, EU CDC & UK PM https://ticktalkireland.files.wordpress.com/2012/11/letter-concern-web1.pdf

Letter to HPSC, IDSI & other health organisations https://ticktalkireland.files.wordpress.com/2012/11/idsi-et-al.pdf

Minutes of our Meeting with the HPSC (Health Protection & Surveillance Centre) https://ticktalkireland.files.wordpress.com/2013/02/hpsc-minutes.pdf

Petition to European Parliament & Minister of Health Ireland https://ticktalkireland.wordpress.com/lyme-links/survey-petition/

Lyme Links……

A links page has been set up to cover a whole multitude of subjects in alphabetical order, everything from testing to symptoms to lyme & ME, lyme & MS, rashes, herxing & more!

https://ticktalkireland.wordpress.com/lyme-links/

Merchandise…..

http://www.ticktalkireland.org/merchandise.html

NB: the store is now closed however check out the link for tips on where to buy alternative supplies

News……Connaught Tribune Spring 2014

This link contains many Irish related articles including news articles with Tick Talk members & volunteers! https://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/

Radio…….

Lyme on radio https://ticktalkireland.wordpress.com/lyme-links/lyme-on-radio/

Research…..

Tick Talk has been working closely with Lyme Research UK & Ireland team to help collate studies relevant to testing. Lead researcher of the team also presented her social studies survey looking at experiences of Lyme patients in UK & Ireland at our lyme conference 2012.

A copy of her talk is available on our conference disks (we have some left – available free by sending an SAE!)

Some links on studies/articles undertaken by the group available at:looking glass

http://lymeresearchuk.org/research/

http://lymeresearchuk.org/links/

http://lymeresearchuk.org/testing-for-borrelia/

Support….

We can provide limited amount of help & advice however none of us on the board are medically qualified & our team is very small. We hope a lot of the information & links provided will offer assistance & talking to other members on our groups below. (PS no doctors can be named in public to protect them as much as possible)! If you do need to contact us we can be contacted here at: http://www.ticktalkireland.org/contact.php.

Please Note: We are a very small team & as such cannot offer telephone support to patients.

Surveys…..

Lyme & Tick Surveys (Ireland) http://www.ticktalkireland.org/surveys.html

2014 results avail at:
https://ticktalkireland.wordpress.com/2014/05/28/survey-results-2014/

2012 results avail at:
https://ticktalkireland.wordpress.com/2013/04/08/news-update-spring-2013/

2011 results avail at:
https://ticktalkireland.wordpress.com/2012/01/19/latest-survey-results-ireland/

Tick Sweeps….

15 ticks Portumna Sep 18 2011_1
Tick Talk has gotten close & personal with a few ticks in Portumna Forest. We didn’t have to go far into the forest, there were numerous samples found in the picnic area, around the tables where people had been eating & around the bases of trees where children had been playing & even in the short grass in the area for picnic blankets – be wary out there!

Some pics of the ticks collected can be found at:

http://www.ticktalkireland.org/ticksweeppics.html

TV…..

Pauline from Tick Talk speaks on TV just before our conference in 2012! http://vimeo.com/44034845

Pauline also appeared on TV3’s Morning Show however the link is no longer valid!

Videos……

Talk by Tick Talk Ireland http://www.youtube.com/watch?v=216PqMYn99Y

Slides by Tick Talk Ireland http://www.youtube.com/watch?v=LayW4TQXLuc

Video to support Wordwide Protest http://www.youtube.com/watch?v=3J0rZezwY7g

Fundraiser for children’s book project http://www.youtube.com/watch?v=xLSQhAl7AIE

Websites….

Facebook Group http://www.facebook.com/group.php?gid=44960753282

Facebook Fan Page https://www.facebook.com/pages/Tick-Talk-Ireland-Lyme-Disease/115731715179208

Facebook Herbal Group https://www.facebook.com/groups/263709223729311/

Twitter Feed https://twitter.com/ticktalkireland

Blog Site https://ticktalkireland.wordpress.com/

Main Site http://www.ticktalkireland.org/

(PS loads more guides, books, support group links available on our blog site – see right hand menu for more at: https://ticktalkireland.wordpress.com/)

Tick-Talk-Logo-Ribbon

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Hidden in Plain Sight

looking glass
Not every tick carries the Lyme causing bacteria ‘borrelia’ & if they do then not everyone succumbs to the disease. A person can be an asymptomatic carrier whether acquired from a tick bite or passed along by the mother. However some people can be unwitting sufferers of Lyme disease & not realise due to the overlapping symptoms with other illnesses, such as MS, ME, Parkinsons, ALS & even conditions affecting the skin & eyes & multiple organs.

Transmission times may differ depending on strain & sometimes you see 36-48 hours mentioned before Lyme can be transmitted from a feeding tick. This may lead to people dangerously thinking they are safe even when the tick had been feeding for a while. This website shows a collection of articles related to shorter transmission times..

So it seems that Lyme may not always be hard to catch, but what about a cure? Let’s take a closer look at the cause of Lyme disease ..

Some Interesting facts about borrelia…

Did you know that the spirochete can move faster than any human cell in the body?

The fastest speed recorded for a spirochete is upward of two orders of magnitude above the speed of a human neutrophil, the fastest cell in the body. This alacrity and its interpretation, in an organism with bidirectional motor capacity, may well contribute to difficulties in spirochete clearance by the host.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0001633

Did you know that borrelia doesn’t need iron to survive?

“Current dogma states that to be successful in humans, bacteria must overcome strict iron limitations that the human body imparts on them…To our surprise, we found that B. burgdorferi doesn’t even require iron. In fact, iron is extremely toxic to it.” http://www.sciencedaily.com/releases/2000/06/000602073005.htm

Wow, borrelia has 3 times more plasmids than any other bacteria & is more complex than syphilis!

Borrelia has over 1500 gene sequences so this is a very, very complex bacteria. There are at least 132 functioning genes in Borrelia and this is in contrast to Treponema pallidum which is the spirochaete that causes Syphilis. This bacteria has only 22 functioning genes so Borrelia is a much more complex organism from a genetic point of view compared to the organism that causes Syphilis.
https://ticktalkireland.wordpress.com/lyme-links/structure/

About the spirochete:

The spirochete is as long, as a fine human hair is thick. Borrelia burgdorferi is a highly mobile bacteria, it can swim extremely efficiently through both blood and tissue because of internal propulsion. It is propelled by an internal arrangement of flagella, bundled together, that runs the length of the bacteria from tip to tip.
http://www.lymeneteurope.org/info/the-complexities-of-lyme-disease

Granules or blebs:

Lyme spirochetes have also been seen shuddering violently or breaking into pieces, producing small particles called granules or blebs. Radolf and Bourell (1994) believe that the granules are “pinched-off” bits of cell wall which have been shown to contain DNA material (Brorson and Brorson 1997). ..Others have observed the formation of blebs in response to the presence of a strong immune response or powerful antibiotics, suggesting that granule formation is another way that Bb survives the action of bactericidal agents (Sadziene and others 1994, Dever and others 1993).
https://www.natcaplyme.org/lyme-topics/the-borrelia-genus/2.html

L-Forms:

When a bacteria like a spirochete loses its cell wall, it becomes incapable of holding its spiral shape. It becomes a sphere surrounded by a thin semi-permeable membrane. This round sphere is like the evil counter pare to the classical spiral form. Why evil? Well, when the bacterium sheds its cell wall, it also sheds several proteins that are markers to the human immune system. In other words, the immune system has trouble finding and recognizing this new form of the bacteria. It’s almost like a criminal using disguises to change identities after each crime. Only this disguise is also bullet proof because, without a cell wall, antibiotics like Rocephin are useless.
http://www.lymeneteurope.org/info/notes-and-observations-on-cell-wall-deficient-forms

Cyst Forms:

The cyst form of B. burgdorferi develops when a single Lyme spirochete curls into a ball and forms a cocoon around itself, which is impermeable to most antibiotics.
Cyst formation in Bb occurs in response to common antibiotics such as ceftriaxone and penicillin (Murgia and others 2002, Kersten and others 1995). Researchers have also induced cyst formation by exposing the Lyme disease spirochete to other stressors, such as nutrient deprivation (Brorson and Brorson 1998b; Brorson and Brorson 1997) or high temperature, extreme pH variations, and the presence of hydrogen peroxide (Murgia and Cinco 2004). Gruntar and others (2002) found that B. garinii cysts proved infective when introduced into mice and could even survive freeze-thawing. https://www.natcaplyme.org/lyme-topics/the-borrelia-genus/2.html

Biofilms:

Emerging research indicates that biofilm may be a significant factor in Lyme disease and subsequently will impact requirements for treatment. Biofilm is a polysaccharide matrix that traps the bacteria making it harder for antibiotics to reach and destroy them.

Biofilm protocols have five main goals:

1. Eat through the goo-like matrix using enzymes and thinning agents
2. Break the bonds between the goo using Ca-EDTA
3. Kill the now-exposed bugs using antimicrobials
4. Sweep the whole mess out using fibers and binders
5. Rebuild the gut lining with happy, healthy critters

http://www.lymebook.com/biofilm – an interesting book about the role of biofilm and source of biofilm protocols.

In summary:
Borrelia moves faster than any other living cell in the body
It does not require iron to survive
It is pleomorphic meaning it can change form at any given moment, evading antibiotics & the immune system & can reconvert back to active form when the coast is clear.

Different forms may include motile (spirochete), cell wall deficient (L-form/cyst/round bodies), fragments, granules & blebs & biofilm (a slime layer protecting all forms from drugs & the immune system).

Click here for a must see video showing cysts, spirochetes & granular forms in one massive bio-film mass! http://www.youtube.com/watch?v=a4uNDWdChM8&feature=related

For a fascinating look at borrelia or ticks under the microscope check out our web page at: https://ticktalkireland.wordpress.com/lyme-links/under-microscope/

ILADS

Testing, Testing..

Testing is a huge issue & one I feel sad about. Why sad? Because it’s long be known that testing needs to be improved & yet things are still far from perfect. To be fair, advances have been made – C6 testing is now utilised, however this is not necessarily useful in all patients – different strains can produce different bands in testing & yet instead of looking to see if a band is specific to lyme they instead require an X number of bands to be positive, thereby ruling out someone who has poor immune response or may be too early in the illness to start producing enough antibodies.

Also early antibiotics are known to abrogate immune response but if the early treatment is inadequate the patient can still go on to develop disseminated lyme disease & yet test falsely negative.

I have known patients to exhibit completely negative C6 tests which was then used to rule out Lyme disease who then went on to test positive in a Western Blot. Is the patient then told their C6 was false negative or the WB was false positive? Either way some of the testing was faulty.

I have known patients with a positive PCR of spinal fluid being told it was a false positive (presumably because their antibody blood tests were negative) & therefore denied IV treatment. I have known some people being refused testing altogether.

What about those patients who were borderline positive? Was the cutoff too low? Was the mild response to the testing showing some infection? Is the infection gone or still active??

A patient who had the foresight to look at other patients blood (most with a previous diagnosis of ME) under the microscope has some amazing high quality pictures & video footage. You will be shocked by what he found, especially as most of these patients were negative by NHS testing (although positive by private tests such as Igenex & LTT). Why not take a look at:
http://counsellingme.com/microscopy/SpirocheteBloodMorphology2.html

Some patients choose to move away from antibody testing & find antigen testing looking at T cells using private funds. Doctors however are wary of these tests & often refuse to accept the results. Some T cell tests though can be useful according to these studies.

LTT/Elispot – Lymphocyte Transformation Test (B or T Cell) Studies
The sensitivity of LTT was superior to serological investigation of antibodies in the ELISA or immunoblot tests and correlated well with clinical symptoms. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3751012/
The ELISPOT technology has proven to be extremely sensitive in detecting even low frequencies of antigen reactive T cells and has been approved by the FDA for use in the diagnosis of tuberculosis http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3972671
The Lymphocyte Transformation Test for Borrelia Detects Active Lyme Borreliosis and Verifies Effective Antibiotic Treatment http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/
The level of detection by ELISPOT was 10 to 200 times more sensitive than ELISA performed on culture supernatants. http://www.ncbi.nlm.nih.gov/pubmed/7999925
After therapy, most patients (90.7%) showed negative or markedly reduced lymphocyte reactivity correlating with clinical improvement. http://www.ncbi.nlm.nih.gov/pubmed/16876371
Use of a cocktail of recombinant, in vivo-expressed B. burgdorferi-antigens revealed the robust induction of borrelia-specific antibody-secreting cells by ELISPOT. http://m.medicalxpress.com/news/2011-06-lyme-disease-bacteria-lymph-nodes_1.html

So as it’s known that testing needs improving, can we at least agree that until such time that they are improved, that alternatives such as LTT be considered as viable tests?

I conclude you have Lyme disease but what to do with you?!

question mark

Looking at treatment we can see from the morphology listed above that it could be tricky
to treat so what options are there? Eva Sapi found in test tube studies that doxycycline doesn’t perform as well as hoped. Although it’s effective against spiros it encourages formation of round bodies (effectively hiding themselves away from treatment). It has long been known the metronidazole (flagyl) is effective against cell wall deficient drugs but the surprising find was that it’s also effective against other forms too. Combination therapy is probably key & the use of biofilm busters such as protelytic enzymes may help.

A recent study on persisters listed FDA approved drugs & their ability to clear persistent bacteria & again doxy didn’t do so well. If we can respect the bacteria for what it is (NOT hard to catch & easy to cure) then we can really look at how to get patients well & how to test for bacteria more effectively. If someone is chronically ill after treatment it should not be assumed that A. they didn’t have Lyme in the first place or B. that they ‘must be’ cured by short treatment therefore anything else thereafter must be ‘aches & pains of normal living’ or post lyme syndrome.

Many patients will tell you that the flares before treatment can be just as devastating as after treatment suggesting an active ongoing infection. Relapses can be common too as the bugs may lie low (in a spheroplast/cystic form /round bodies) evading treatment, once withdrawn they can convert back into motile form causing more havoc to the patient.

In this study (PDF) on round bodies the author stated that round bodies were able to revert and become active spirochetes from day 5 & in this study the author found motile spiros developed from cyst forms even after freeze/thawing conditions.

We need to understand more the immune system’s response to Lyme & the effective ways to tackle it. We need a much shorter treatment time by using more effective drugs & thereby lessening the recovery time. We need to improve testing AND THEN ACCEPT THOSE IMPROVED TESTS instead of insisting that the 2 tier test is the only one that should be used.

Just like with TB we need to move away from antibody testing & embrace T cell tests as standard. Similar to the patient who looked at the bloods of ME patients we need to be prepared to look more closely at blood & tissue of Lyme patients – is there live bacteria despite negative testing, have spiros persisted despite treatment, were patients wrongly diagnosed with ME/CFS in the first place?

Let’s keep asking those questions & pushing for changes.. sadly patients are often the ones pushing for this, shouldn’t the doctors be concerned also?

Patient Power –

Tick Talk Ireland is solely run by volunteers who have suffered & are ‘still’ suffering from the effects of Lyme disease (or close family members of a Lyme disease patient). We do what we do to help prevent others from going through the same ordeal – we rely solely on our volunteers to help us spread the word.

lyme protest 1

Here’s some ways we have made a difference…

Articles, TV, Newspaper & Radio Interviews, Tick Sweeps, Contacts with TDs & MEPs, Leaflets, Handouts, Surveys, *Staff Awareness Packs, Talks, Awareness Tables, Lyme Conference, Under Our Skin showings, Children’s Book & Poster, Meeting with HPSC, Letter of Concern to Health Minister Ireland & British PM, Letter to the IDSI & HPSC, Letter to Medical Card Team, Newcomers Guide & FAQ, Petitions, Websites, Blog Site, Facebook Pages, Email Support & Twitter Feed, Collation of Research for Lyme Research UK & Ireland, attended the Public Health England Meeting in London & also Supported the Worldwide Rally.

*Staff Awareness Packs are available by contacting our information officer mary (at) ticktalkireland.org. We also have a limited supply of leaflets, if you are able to help with distribution feel free to contact us at info (at) ticktalkireland.org (replace at with @ before sending!)

Patients have also helped with talks in their local areas, leaflet distribution, Under our skin showings, radio & news interviews, annual meet-ups, contacts with TDs & MEPs, helped get a warning sign at Killarney National Park Play Area, volunteered at awareness events, manning tables & doing talks plus helping at our very first Lyme conference, also presentation of concerns to the Government Health Committee in Dublin (which included inputs from lab specialists, a tick specialist & head of veterinary labs, Oct 2013)

NB: We at Tick Talk Ireland support ILADS & endorse their New Guidelines issued in 2014 as the best source of information regarding the treatment of Lyme disease.. We also support Burrascanos Treatment Guide & The German Borreliosis Society Guide for supportive information.

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In Ireland the Health Services Executive (HSE) have a medical card system whereby those who qualify based on income & ill health may qualify for zero doctors fees & free hospital stays as well as reduced prescription charges (normally there is a charge for doctors & hospital stays unlike in the UK). Since 2011 patients have found that medical cards are being unfairly revoked leaving many sick patients with extra bills. The government has since done a u-turn & have offered to return medical cards to many families that were wrongly taken away. Meanwhile there is underway a Medical Card Review whereby patients can submit why they feel their condition should be prioritised as a need for Medical Card.

Per the HSE website:

The Expert Panel will identify a range of medical conditions, in priority order, that would benefit most from medical card eligibility. The focus of the expert panel is on chronic, life-long and life-limiting conditions.

The HSE is now inviting submissions from the public, patient representative groups and professional bodies, to inform the work of the expert panel. Submissions can be made using the form here, or by post or email. The closing date for submissions is Monday, June 30th 2014.

To this end Tick Talk Ireland submitted the following report in support of Lyme disease patients who are suffering from a chronic, life changing condition.

Medical Card (PDF – hit back arrow to return to page).

We encourage patients to have their say too (by 30th June) – click below for more information: http://www.hse.ie/eng/services/news/newsfeatures/medicalneedconsultation/

Useful resources:

Is Lyme really a chronic infection?
Why is Lyme such a tricky thing to treat?
Did you know that borrelia is the fastest moving thing in the human body & has more plasmids than any other bacterias including syphillis?
Surely testing should be simple right?
Help, this is all so confusing – check out our newcomers guide!
There’s so many myths in Lyme – indeed, & we wish there wasn’t, but meanwhile take a look!

Open Learning Centre!

Letter of Concern to Minister of Health
Letter to the IDSI et al
Meeting with the HPSC
Persistence & Seronegativity
A look at Patents
Irish Related Articles
Lyme & Tick Surveys
Burrascano Treatment Guide
Children’s Book by Tick Talk Ireland
It’s all about Prevention
Freq Asked Questions
Suspect Lyme?
Lyme Handout
Lyme Leaflet
Lyme Links

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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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Luna has landed!

luna front coverOur new children’s book ‘The Adventures of Luna & Dips’ has been a great hit. We managed to find a home for all our copies before they’d even arrived from the printers. Thanks to all the schools who have asked for copies for their children. Teachers came to me saying they knew of someone with lyme disease, a sister, a friend, their own family & in some cases children in the class had been sufferers too. Hopefully the book will help to prevent more cases of the disease by raising awareness.

Click below to read Luna on kindle (kindle apps can be downloaded for laptops, phones & PCs):

Adventures of Luna & Dips

Luna & Dips is copyrighted by Jenny O’Dea – all rights reserved.

If you like Dave’s wonderful illustrations feel free to check out his website at: http://http//www.talenthouse.com/davefarrelly or his facebook page.

Download a poster for schools

Download notes for teachers
_________________________________________________________________________________________________________________________

Happy Lyme Awareness Month 🙂

Well the month of May is International Lyme Awareness Month & Tick Talk are celebrating by offering several special offers on our merchandise. As well as the current offer of 20-25% you can now also receive the following…

* For any orders over 15 euros – receive a FREE lyme ribbon with gold pin

* For any orders over 25 euros – receive a FREE set of tick pincers by care plus & ribbon

* For any orders over 35 euros – receive a FREE Tick Talk Ireland hi-vis vest, tick pincers plus lyme ribbon

All this ON TOP of saving up to 25%. Amazing value but only available until end of May & while stocks last.

To hop to our merchandise store head on down to: http://www.ticktalkireland.org/merchandise.html

Please note that discounts (20-25%) will show up in shopping cart, advertised prices on site are before discounts applied!
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More research needed

looking glassCan you help pave the way for research? Dr Eva Sapi, a speaker at our lyme conference last year has been doing some amazing research. From looking at biofilm, to the types of herbs that tackle lyme to the most effective antibiotics. She has also been involved in the new test offered by Advanced Labs. Now she is looking for funding to help her team acquire a very high end microscope.

If you can help with pledges no matter how small the website is: http://www.indiegogo.com/projects/stop-the-suffering-with-lymedisease-org-support-dr-sapi-s-research?c=home

Tick Talk fully supports those who look beyond the narrow view that lyme cannot be chronic & any scientists or doctor that strives hard to find better treatment & testing for lyme patients are heroes in our eyes!
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Get ready to rumble!

Finally a reminder that the Worldwide Lyme Rally is due to take place May 10/11th at a number of venues across the world. The UK have a terrific website explaining their mission at: http://worldwide-lyme-protest.org.uk/

Check out this video explaining how the worldwide protest project was started..

This video show patients around the world including some patients from Ireland..

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luna front coverluna back cover

New Book out written by Jenny O’Dea

Great news – the new book ‘Adventures of Luna & Dips’ is now completed & available FREE to schools & members of the public (for Irish residents only!). Suitable for ages 8/9 & up, the book written by Tick Talk Ireland’s co-founder Jenny O’Dea aims to encourage people young and old to learn about ticks and the dangers of Lyme disease. Please note that supplies are limited and will be offered on a first come first served basis. Packs for schools will also include leaflets for the parents, a poster for the school, plus information for teacher including tips on prevention, colouring sheets, plus child friendly websites for more information.

NB: All books have now been claimed, the demand exceeded expectations however free downloads are available below:

Some useful links – hit back button to return to page:

Download the Adventures of Luna & Dips for free
Download ‘Luna Says’ poster for schools
Protecting your children
Lyme disease handout
Lyme disease Leaflet
Tick study results 2013
Luna to colour, Fantaz to colour & Dips to colour
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Tick Awareness Week

The HPSC have set the week of 15th April aside for Tick Awareness Week. They have published information on the Epi insight page.

Please note that Tick Talk Ireland are very concerned about the testing available here in Ireland & the possible high level of misdiagnosis. The article suggests that based on 10 cases of neuroborreliosis per year that other (non neuroborreliosis) cases must equate to roughly 50 cases per year, however we feel that neuroborreliosis cases may be under reported due to the cross over symptoms with MS & ME. Also the notifiable cases only allow for lab confirmed diagnosis.

The test kit manufacturers themselves say that a negative Lyme test does not rule out infection however a negative test will not lead to a case being notified at all & most likely be diagnosed as a case of ME underplaying the real numbers. Similarly on the other end of the scale we may have people who are treated at early stage (such as rash or flu) who may never reach stage 3 neuro stage. If a doctor is good at treating early in one area then there’d be less chance of more advanced cases, in other area doctors may not be on the look out for Lyme cases so more chance of Lyme cases becoming more serious. We had hoped that ALL cases would be tracked, ie early & late stage to allow for more of a guide on clusters of cases & true numbers. Whilst it is clear that there will never be a 100% accurate way of tracking Lyme we do feel that the current method falls short! For details of our meeting with the Health Protection & Surveillance Centre in January 2013 and the concerns we have, head on down to our news update in Feb.

The HPSC have also published awareness packs/posters for travellers and children – these are produced by the European CDC for endemic countries. As always BADA have produced some great information for their Tick Bite Prevention Week in March – check out their web page for more details.
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Surveys now updated!

Good news, our tick and Lyme surveys have been updated. These are rolling surveys reported every 12-18 months – the surveys are still open for completion – if anyone sees ticks during the year do let us know – the Lyme survey is designed for one time completion only but the tick survey can be completed on an ongoing basis in case more ticks are spotted!

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 Jan 31, 2013 a total of 82 people have responded so far.

Results can be downloaded here: Tick Talking Results Jan 2013 (word) SurveySummary_Tick Talking Jan 2013 (excel)

The above text file also includes details from our vet study.

Lyme Survey

In 2009 Tick Talk Ireland produced a survey to Irish sufferers which is updated on regular basis to review trends.

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

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

81 people replied to the survey during the months of July 2009 to December 2012:-

The latest results can be downloaded here as follows- Results – Lyme Survey Dec 2012 (word) SurveySummary_Lyme Survey Jan 2013 (excel)

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Big Sale in our Store!

Great news – Tick Talk Ireland have reduced all our stock – you can make a saving of between 20-25% off all our merchandise through the months of April and May in time for tick & Lyme awareness months. To purchase tick repellants, tick twisters, handy tick cards with magnifying glass, copies of the award winning documentary Under Our Skin, Lyme ribbon & pin, awareness bugs, Find a Cure bangles or Lyme Survivor Bracelets plus copies of our conference DVD head on down to: Merchandise Store

NB: The sale prices are reflected when you place items in shopping cart!
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Lyme Protests Around the World – sufferers speak out

May 10th & 11th are 2 dates set for Worldwide Lyme Protest. Why? Because patients feel that their voices are not being heard – they are worried about testing (the US CDC says it should be for surveillance and not for clinical diagnosis, the European CDC says testing needs to be improved), new tests are being released annually and yet due to rigid rules no other tests are allowed to be used by consultants other than the flawed 2 tier system. Studies have shown that seronegative Lyme exists and yet repeatedly patients are denied treatment based on negative serology which can be hampered by lack of immune response, difference in strains of borrelia, even antibiotic therapy can abrogate response. Once a patient does get diagnosed they may only be treated for a short length of time and deemed to be cured despite animal studies showing that Lyme can persist the IDSA refuses to accept this. All too often a bullseye rash is considered the most telling sign of Lyme when in some studies they suggest that the bullseye rash may often be homogeneous, not in rings but various other shapes or no rash at all! For more thoughts on Lyme & its many challenges check out our post ‘mythbusting‘.

Ireland has no leader for an Irish protest however our nearest neighbour (UK) has a great site set up at: http://worldwide-lyme-protest.org.uk/

We at Tick Talk Ireland would like to add our ‘virtual’ support and have created a page on facebook – there we will post details of lyme videos, posters & pics of sufferers plus quotes of relevance to the Lyme controversy – my favourite is a quote from the scientist Dr Willy Burgdorfer, who identified the causative agent of ‘borrelia burgdorferi‘ in ticks:

He says during an interview with the producer of Under Our Skin:

“The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.” Amen!

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