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Posts Tagged ‘Lyme Ireland’

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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Good news!

Luna has arrived on Kindle! The children’s book ‘Adventures of Luna & Dips‘ written by Jenny O’Dea of Tick Talk Ireland is now released on kindle & available worldwide.

Written as an educational & fun book on the life cycle of ticks, where they live & how they feed – tips on prevention are included, with a mix of facts, fiction & illustrations. Suited to ages 10 & up.To get your copy can search by ttile or product code B00VS46RIQ in any amazon store around the world.

luna front cover

Dates for your diary this Spring – on April 21st there will be an informal patient meeting at Leinster House Dublin from 2-4 pm to discuss issues surrounding testing & treatment – please encourage your local TD to attend if you can.

The HPSC’s Scientific Advisory Lyme Borreliosis Sub-Committee will be meeting on 6th May 2015 & on 17th May there will be a Lyme patient & carer meetup in Thurles, Tipperary (if you’d like more details feel free to use our contact us page for more info).

This year, the HSE announced their Lyme Awareness week will run from April 27th to May 1st 2015.

The HPSC (health protection & surveillance centre) have recently published information on the EPI Insights web page at:
http://ndsc.newsweaver.ie/epiinsight/1d8k33gt9m010gkzp9yxn5?a=1&p=48604010&t=17517774

Leaflets: Tick Talk Ireland have available some leaflets for distribution in Ireland, if you would like to help pass leaflets to vets, GPs, local libraries, churches, schools & sport clubs, brownie, scouts etc feel free to contact us (as soon as possible) at: http://www.ticktalkireland.org/contact.php

Portumna larval 2

Leaflets are also available for download on our site at: http://www.ticktalkireland.org/leaflets.html

Surveys: Spring is with us & sadly so are the ticks!  Keep a close eye on your self, children & pets whilst out playing, camping, fishing or even releaxing in your own back garden (our surveys show that 22% of ticks being reported were found in their own gardens). If you do spot a tick feel free to let us know on our surveys (see Tick Talking While You’re Walking link on the following site): http://www.ticktalkireland.org/surveys.html

The link above has survey results up to May 2014 with latest results being published summer 2015.

If you are a Lyme patient residing in Ireland (or a patient abroad who was infected in Ireland) why not take our Lyme Disease in Ireland survey located in the web site posted above too. Meanwhile, we have a new map online which will help us pinpoint cases (please note this indicates where the tick bite/infection took place not where the patient resides..)

https://www.zeemaps.com/map?group=1392964&hc_location=ufi

What about latest research? Promising new studies are coming out about persisters causing ongoing symptoms & the drugs that can be helpful to tackle them – let’s hope this type of science can continue unhindered as patients are tired of the ongoing debate about chronic Lyme & just want to be treated!

Drug Combinations against Borrelia burgdorferi Persisters In Vitro: Eradication Achieved by Using Daptomycin, Cefoperazone and Doxycycline

Jie Feng, Paul G. Auwaerter, Ying Zhang
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

 Published: March 25, 2015 / DOI: 10.1371/journal.pone.0117207

Taking a Bite out of Lyme: in honour of Lyme patients around the world & in support of the Lyme Disease Challenge here is Tick Talk Ireland’s submission:

Shot of lime 2

For information on transmission head on down to:
https://ticktalkireland.wordpress.com/facebook-contents-page/transmission/

IDSA: The outdated IDSA guidelines are currently under review- the deadline for submissions/comments on their proposed Lyme Project Plan has been extended to April 24th 2015, more info at: http://lymedisease.org/news/lymepolicywonk/idsa-deadline-extended.html

UK charity Lyme Disease Action have submitted their views to the IDSA: http://www.lymediseaseaction.org.uk/latest-news/idsa-guidelines/

(ILADS updated their guidelines in 2014: available for download at): https://ticktalkireland.files.wordpress.com/2014/08/ilads-2014.pdf (PDF)

Links: Some useful links on our site are regularly updated – folks may be interested in the Irish related articles section, chronic Lyme section, or testing section. We have lots more useful information in our links page, all in alphabetical order for easy access!

Enjoy & remember to stay safe this Spring & Summer!  http://www.ticktalkireland.org/ticks.html

15 ticks Portumna Sep 18 2011_1

Ticks collected in Portumna Forest, Co Galway Sep 2011

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On March 3rd 2015 there was a discussion between Ireland’s Minister of Health & Irish policitican Dan Neville TD. The details are available to read here or by downloading the following word document.

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.

Tick Talk Ireland
http://www.ticktalkireland.org
https://ticktalkireland.wordpress.com/info/

“Encouraging awareness, prevention & treatment of Lyme Disease (Borreliosis) in Ireland.”

1) https://ticktalkireland.wordpress.com/2010/07/28/persistence-seronegativity/
2) https://ticktalkireland.wordpress.com/lyme-links/chronic-lyme/
3) http://www.lymediseaseassociation.org/index.php/about-lyme/controversy/idsa-guidelines-controversy/1060-statistical-review-refutes-studies-used-as-basis-of-nidsa-guidelines-
4) http://www.lymediseaseassociation.org/index.php/about-lyme/controversy/other/580-analysis-why-klempner-study-is-not-useful-to-rule-out-benefits-of-long-term-treatment
5) http://www.ticktalkireland.org/surveys.html
6) https://ticktalkireland.wordpress.com/lyme-links/testing/
7) http://www.ticktalkireland.org/didyouknow.html
8) http://www.publichealthjrnl.com/article/S0033-3506%2803%2900067-2/abstract
9) https://ticktalkireland.wordpress.com/irish-related-studies/

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Updated 8th Sept 2015: have updated our conference section with some more events that may be of interest to alternative practitioners..

Belgium – a look at testing, traditional med & alternative therapies, Antwerp, Sep 12th & 13th: http://lyme-conference.bbow-apso.be/

Lyme Disease Action – focus on persistence, Uni Cambridge, Sep 12th: http://www.lymediseaseaction.org.uk/what-we-are-doing/conferences/

Cowden/Nutramedix Workshop, Copenhagen, Oct 4th Denmark (discounts on up to 5 protocols avail – free admission, reservations needed to secure place): http://www.nutramedix.com/downloads/Flyers/CopenhagenWorkshopInfoFlyer.pdf

Gresham Centre – lab specialists, Lyme docs & patients awareness day & book launch, London, Oct 10th: https://www.eventbrite.com/e/suffering-the-silence-living-experiences-of-lyme-disease-chronic-illness-tickets-17659779877

Assoc Nutritional Medicine – focus on chronic conditions, Nov 15th, London: https://www.eventbrite.co.uk/e/lifting-the-veil-part-ii-chronic-disease-whats-really-going-on-tickets-17390619812

Beyond Lyme and Other Chronic Illnesses: Reclaiming our Health and Well-Being with Dr Horowitz author of Why Can’t I Get Better, Massachusetts, Dec 4-6th USA: http://kripalu.org/program/view/BLOI-151/beyond_lyme_and_other_chronic_illnesses_reclaiming

Updated 15th July 2015: please note that a new conference has been added in our conf section (down right hand side) – Judy Rocher from Rio Trading will be presenting on Natural Therapies  Lyme Disease and its Associated Infections – covering Cowden/Buhner/Klinghardt & more… (London UK August 2nd 2015)

http://www.eventbrite.co.uk/e/natural-therapies-with-judy-rocher-lyme-disease-and-its-associated-infections-tickets-17650961501?aff=erellivorg

Also on same day is a workshop on testing for Lyme & co. by lab expert Dr Armin Schwarbach: http://www.eventbrite.co.uk/e/laboratory-testing-lyme-associated-infections-training-workshop-with-dr-armin-schwarzbach-tickets-17439741737?aff=erellivorg (aimed at health professionals).

Updated 21st May 2015: please note that a new conference has been added in our conf section (down right hand side) – Cowden/Nutramedix will be presenting a workshop in Dublin June 3rd 2015 on Lyme disease herbal tinctures, all entry is free & particpants can claim reduced price protocols.

Open to patients & practitioners alike. http://www.nutramedix.com/downloads/Flyers/Dublin%202015%20Flyer.pdf

Updated 9th March 2015: have added a new alternative therapy conferences in our conf section (down right side). For quick link to conference at Univ Klagenfurt in Austria (April 25th) go to..

Invitation Klagenfurt Conference April 2015(2)

Feb 2015: Have sent this to some herbalists & naturopathic colleges in Ireland, feel free to pass along!

Rear view of a teenager girl standing in a field of tall grass
Lyme disease has been a growing concern in Ireland. Carried by ticks, Lyme disease can range from a mild illness if caught early to severe, life changing symptoms. It can affect the heart, muscles, joints, tissues, endocrine & neurological systems. Ticks can carry a multitude of infections. Studies in Ireland have been very slow since the retirement of Prof Gray; Gray has written scientific articles about Lyme disease in the 90s which we have collated on our site at: https://ticktalkireland.wordpress.com/irish-related-studies/

Treating & testing of Lyme disease patients is fraught with controversy & political battles, the HSPC, IDSI, RCGP prefer to treat patients with short term antibiotics following the inflexible guide of the IDSA (American Infectious Disease Soc) – many patients go abroad to find someone willing to treat them longer under the guidance of ILADS (Intl Lyme & Assoc Diseases Soc). This of course occurs at great expense to the patient. Integrative therapies are being used much more often as Lyme can cause much disruption to the immune system to warrant just antibiotics alone. We feel there is a need for an integrative type clinic in Ireland who would be willing to take on complex patients, so they don’t have to travel abroad.

If any centre or individual practitioner is interested (or even students learning about integrative therapy) I would like to offer some pointers below in the view of upcoming conferences, useful books/protcols & information on testing just to provide some additional background information.

Testing:

This can be a tricky topic – most commonly antibody tests are used however test too soon & the body may not be creating enough antibodies, tests can also be affected by the strain of bacteria, immune response of the patient or affected by use of antibiotics early in treatment (as it may abrogate immune response). Some patients & lyme specialists use alternative tests abroad such as LTT (T cell tests), CD57 NK (whilst not diagnostic it can show a depleted immune system) & sometimes Igenex testing is used which uses a different set of bands in a Western Blot (WB is a secondary test however lyme specialists prefer to skip the first tier Elisa or C6 Elisa test & go straight to the more specific test).

For more info on testing head to our section on ‘suspect lyme’ http://www.ticktalkireland.org/suspectlyme.html

For a summary on testing, treatment, history, structure of bacteria etc go to: https://ticktalkireland.wordpress.com/newcomers-guide/

Conferences:

Coming up are 3 conferences that may be of interest:

1. Lifting the Veil – Infectious Pathogens & Their Role in Chronic Disease

Academy of Nutritional Medicine, Sunday, 8 March 2015 from 09:30 to 18:00 (GMT) London

ME, FMS, Autism & Lyme Disease.. (Lab specialist Armin Schwarzbach will be present. He runs the newly opened Armin Labs / prev worked at Infectolabs in Germany.) He may be able to help with any questions on lyme disease testing.

https://www.eventbrite.co.uk/e/lifting-the-veil-infectious-pathogens-their-role-in-chronic-disease-registration-15714304909

2. Natural Therapies for Lyme Disease, March 28th 2015

Half-day workshop at Holiday Inn, Regents Park,
Carbuton Street, London W1W 5EE, from 9.30 am – 1.00 pm.

Judy Rocher, therapist and education manager of Rio Trading, will be discussing Lyme Disease and natural therapies such as the Cowden protocol (condensed and full). This course is hosted by AONM.

Course fee: £12/goodie bags with products above and beyond this will be distributed. The event is CPD accredited. To register, please go to http://tinyurl.com/Therapies-for-Lyme

3. Integrative Therapies for Lyme disease – April 10-11 2015 (Netherlands)

With a focus on Beyond Balance herbals – speakers inc Gedroic, Schwarzbach & Klinghardt (speakers are well known in the Lyme arena; we have no experience of Beyond Bal herbs)

http://www.invintro.eu/en/content/conference-2015

4. ILADS International Lyme Conf Germany 8-9 May 2015

ILADS always has wonderful & very knowledgable speakers, discussed will be testing & treatment covering various tick-borne diseases & inc paediatric health care. Often exhibiting is Cowden, a supplier of herbal tinctures for Lyme & co.

http://www.ilads.org/lyme_programs/augsburg/ilads-augsburg-lyme-conference.php

Herbal protocols:

Over the years many protocols have been developed to help treat a complex disease such as Lyme disease, the ones most commonly used are Buhner herbs (we highly recommend his book Healing Lyme Disease, a new version is due out this Spring). This website is useful to get an idea of the core protocol although the book covers much much more. http://www.buhnerhealinglyme.com/

Cowden is a protocol made by Nutramedix, they can be used individually or full monthly protocols are available. Some practitioners/herbalists are able to apply for a reduced price protocol for one patient per practice for those who are eligible (on low income). Cowden also hold workshops at conferences around Europe where they offer reduced protocols for any practitioner/therapist that attends. These protocols cover heavy metals as well as immune support, detox & protection against multiple infections (viral, bacterial etc). More information available at: http://www.nutramedix.ec/ns/lyme-protocol

Byron White is another herbal program that patients use, it is very strong going by feedback from patients & only available via a practitioner.. http://www.byronwhiteformulas.com/

There is a whole wealth of alternative med information out there & I have selected the top 3 most regularly used by patients as a guide. More info on alternative medicine is available on our site at: https://ticktalkireland.wordpress.com/lyme-links/alternative-treatment/

Expertise:

I would also highly recommend Dr Horowitz’ new book released last year on ‘Why Can’t I Get Better’ – an integrative doctor with a wealth of experience & a regular speaker at conferences. The book contains a checklist of symptoms to help in diagnosis of patients: http://www.amazon.co.uk/Why-Cant-I-Get-Better/dp/1250019400/

Finally I’d like to offer you an excellent presentation by highly esteemed lyme specialist Dr Harris who compiled this extensive review of herbal protocols in relation to Lyme & other tick-borne infections.. http://www.acimconnect.com/Portals/0/Events/Dallas%202013/Presentations/Harris-%20DFW%20June%202013.pdf

NB: we have a wealth of information also in our links section on this site at: https://ticktalkireland.wordpress.com/lyme-links/

Or  check out our downloadable leaflet.

I hope this information is of interest to you & your colleagues & I wish you all the very best. Tick Talk Ireland. lyme protest 1

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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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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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