Updates for Winter 2015

I was reading with great interest the reports from a Lyme Disease Taskforce in Pennsylvania America. Why the focus on America I hear you ask? Well, strangely for years the treatment & diagnosis of Lyme Disease has been led by the US CDC (Centre for Disease Control) & the IDSA (Infectious Disease Society of America). Both groups feel that Lyme is easily tested & easily treated – so why are patients finding themselves repeatedly testing negative & why is treatment often not making a difference to their symptoms?

First of all Lyme can be tricky to diagnose – the symptoms are not specific to the illness but there are clues, for instance feeling fluey is a symptom many of us get from time to time but summer time flu is a concern & may suggest a Lyme infection.

Following an insect bite (ticks are not insects but arachnids but have mentioned insects to inc mosquitoes, gnat bites etc) a rash is common ie you may have reddening, irritation or welting & swelling, in Lyme however it most usually doesn’t itch or welt & the rash usually starts to expand from the centre – it may then begin to form rings like a dartboard however be aware that sometimes it can be uniform in nature (ie no rings) & sometimes may expand into shapes that are not circular.

Some patients even miss stage one of the disease (ie no rash or flu) & skip to later stages which have crossover to other illnesses – they can resemble for example ME/CFS, MS, arthritis, depression & much much more. Our links section contains a lot of studies on other crossover infections.

So if a patient doesn’t get an obvious bulls-eye rash (which is diagnostic) then the physician has to rely on testing & this is where problems occur.

In our surveys we found that 64 out of 104 respondents (61%) were diagnosed through the HSE or NHS using Elisa or Western Blot testing. However 48 respondents (46%) chose to use private labs. in Germany or America to support their diagnosis (some using both private & public).

Reasons for using a private lab. can be down to several factors – the antibody Elisa test is not always effective in detecting borrelia infection in early cases and in some manifestations of late disease, so if your doctor tested you at a time where your antibodies were negative you would have been told that you don’t have Lyme disease. Private labs may use antigenic/ T cell testing methods as opposed to the 2 tier antibody test, and are often equipped to test for other tick borne diseases which may be in addition to the Lyme infection. Examples include bartonella, ehrlichia (anaplasma), babesia, mycoplasma and Chlamydia pneumonaie.

For an in depth look at testing see our page at https://ticktalkireland.wordpress.com/lyme-links/testing/

or for a summarised look at testing concerns go to: https://ticktalkireland.files.wordpress.com/2015/04/issues-surrounding-testing.pdf

More on tick-borne co-infections can be found at: https://ticktalkireland.wordpress.com/lyme-links/co-infections/

When a patient does get the diagnosis & everything fits clinically then along comes the next hurdle – treatment! The IDSA feel that a few weeks antibiotics will clear a Lyme infection & any ongoing symptoms are nothing to do with the disease itself. I agree that in some cases permanent damage does occur & in other cases the symptoms may be ongoing due to a different infection (for example a co-infection often requires different treatment so if this is not addressed it will hamper recovery from Lyme disease).

As Dr Horowitz says in his book if you have 16 nails in your foot & you pull out 3 of them your still going to be hurting! However, due to the idea that Lyme is so easy to treat this often leads to disbelief when the patient presents with ongoing symptoms or develops new ones & often they are told their illness is of mental origin (in our survey in terms of misdiagnosis 32 out of 104 indicated they were previously diagnosed with chronic fatigue syndrome (not surprising when the most reported symptoms is profound fatigue & weakness) & 18 people were told they had a psychiatric illness.

Meanwhile, the opposing group ILADS (International Lyme & Associated Diseases Society) realise that testing can be hit or miss, patients can remain ill for long periods of time & they consider co-infections plus persistence of infection & look at ways to help the patient with regards to lifestyle & dietary change, the use of supplements & so on. They realise there is no one size fits all form of treatment. Again the doctors, patients (& groups) who use ILADS philosophy are ridiculed by certain members of the IDSA & a Lyme Ad Hoc Committee Group was purportedly set up especially for this purpose.

In this document we have covered some of the studies written by IDSA guideline authors themselves that discredits their own current view… Meanwhile our section on chronic lyme has a lot of food of thought for those willing to get their teeth into it… or maybe this patents list is an eye opener?

In our prev blog post we covered some advances being made  – let’s hope this will continue & we can bridge the gap between IDSA & ILADS into which many a patient falls!

Meanwhile some urine tests are being developed which could be useful for early Lyme & we await advances in those, plus the Hilysens test has now moved into stage 2 of its development.

So back to the taskforce in America, after reading the report I was keen to ask for an update on the taskforce that was taking place here in Ireland. Despite the Irish taskforce meeting being held early May we have had no feedback at all & we were promised a few times by Minister of Health Leo that a patient representative would be invited & yet no-one in our team was ever approached to take part. I sent this message below to the Dublin Health Protection Office in Oct 2015 & currently awaiting a reply… Letter to Dr Paul Mckeown

Plus our letters in the past
Letter of Concern, Letter to the IDSI et al, Letter following consensus document, The Big Lyme Debate, Minutes from meeting with HPSC, ..

Luna Tick is looking for readers!

Developed by Jenny O’Dea from Tick Talk Ireland the Adventures of Luna & Dips was initially released for school children across Ireland. In 2013 schools also received a teacher’s pack complete with poster, leaflets, colouring sheets (Luna to colour, Fantaz to colour & Dips to colour) + useful information. We also sent copies complete with poster & leaflets to some public librairies.

Now Luna has been released in kindle version & available WORLDWIDE in all kindle stores! Suited to ages 10 & up (inc adults) & beautifully illustrated by Dave Farrelly.

At just 1.50 (UK pounds) this is reasonably priced & all proceeds go towards keeping our website going! PS: Those without kindle can download an app via amazon to read on their phone, laptop, PC..

Is Lyme the new Aids?

There’s often been a comparison to the patient movement & the plight of many in Aids. Dr Jemsek who previously worked with Aids patients prior to becoming a Lyme specialist says that Lyme patients are often sicker & more difficult to treat.

Meanwhile in an article by Jessica Bernstein (Doctor of Psychology) she states that Dr. Conant was one of the first physicians to identify AIDS in 1981 & he says there are striking parallels between the struggle faced by AIDS patients and the battle being waged by those suffering with Lyme today. He points out that Lyme research only receives $25 million a year in funding, while many of the other infectious diseases receive between $100 and $200 million annually. HIV now receives over $3 billion a year. This article by Bernstein is a very interesting insight into Dr Conant’s views.. http://www.truth-out.org/news/item/21206-from-aids-to-lyme-will-we-let-history-repeat-itself

Another focus on HIV v Lyme is in this 3 part Huffington post series  ‘Is Lyme Disease the New AIDS? What You Need to Know‘.

Part 2 available here. 3rd & final instalment here.

So what can we learn from this post? We can learn that testing & treatment simply is NOT a one size fits all approach to Lyme, there are many challenges faced by doctors & patients alike. The recent debate in the House of Lords UK showed some of the problems that can occur. Lyme Disease Action has links to the video plus transcripts covering the proceedings. In Ireland too there have been hearings held by patients plus a UK parliamentary hearing.

Meanwhile we note with interest that the other side of the world is also hitting problems with regard to testing & treatment, a quote from the Chief Medical Officer Chris Baggoley in Australia came to light recently, he was quoted as saying “There’s no reason why their doctor can’t treat [Lyme disease patients], and exactly who is telling them that I don’t know — it’s certainly not coming from the medical board.” Doctors who offer treatment for suspected Lyme disease will not face censure by regulators, the country’s top doctor has pledged.

(However we know from patients that problems do often occur facing the same dilemma as many across the world..)

The Australian Senate has proposed a hearing in tick-borne diseases in the summer of 2016..

Surveys

Results from our rolling surveys show that often times Lyme patients receive a late diagnosis which makes their recovery that much harder. 52% patients waited a year or more before receiving a diagnosis. Those that were treated earlier seemed to have fewer symptoms and better recovery time.

72 out of our 104 respondents have been ill for more than a year in TOTAL including pre & post treatment which is an alarming 69%. Nearly a QUARTER of these patients have been ill for 10 years or longer. This supports the claim that Lyme MUST be treated quickly to avoid chronic and persistent infection.

A new app being developed in America aims to analyse patient’s recovery over time to try & establish useful methods of treatment.

Meanwhile, if anyone has been diagnosed with Lyme & living in Ireland our surveys are still open, also we have a tick survey (Tick Talking while you’re walking) available for anyone spotting ticks in their local area (pls note, for Ireland only!)

All surveys plus results up to May 2014 available at:
http://www.ticktalkireland.org/surveys.html

Our next set of results will be downloaded Spring 2016 in time for Lyme awareness. All results are reported to health officials also in Dublin.

Meanwhile we offer our support & gratitude to all the scientists out there striving to get Lyme disease more properly researched & reported – just a handful of them are as follows:

 Paul Duray Research Trust:

The aim of the foundation is to train physicians and conduct research into the pathology of chronic Borreliosis infections of the human central nervous system, with special reference to Alzheimer’s Disease and Multiple Sclerosis.
https://durayresearch.wordpress.com/

 Dr Alan MacDonald:

On Under Our Skin Dr MacDonald identified brains of alzehimer patients showing evidence of borrelia. He is currently fundraising for more studies into this..
http://whatislyme.com/please-help-dr-alan-macdonald-fund-his-lyme-research/

 Dr Eva Sapi:

A Lyme sufferer & researcher at the Univ of Newhaven has done some interesting work on Lyme including a look at biofilm, various forms of the bacteria plus antibiotics/herbs to help tackle it.
http://www.newhaven.edu/faculty-spotlights/eva-sapi/

 Tom Grier:

A microbiologist & Lyme sufferer who was told he had MS has written books & articles on Lyme disease/MS & continues to support many of the scientists in terms of research. This site lists some of his articles (scroll to about halfway down for list) http://www.lymeneteurope.org/info/

 Dr John Drulle:

The John Drulle, M.D. Memorial Lyme Fund have awarded a grant for a 2 year study researching the diseases carried by the Lone Star Tick (Amblyomma americanum). Some articles authored by Dr John are on this site at
http://www.johndrullelymefund.org/

 Dr Daniel Cameron:

In addition to his writing and clinical work, Dr. Cameron conducts epidemiological research through the Lyme Disease Practice & Research (LDPR) center. LDPR consists of clinicians, researchers, and support staff dedicated to providing the best patient-oriented clinical research.
http://danielcameronmd.com/lyme-research-and-insights/

 Dr Brian Fallon:

Dr Fallon works at the Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center, the first academic research center in the States to focus research on chronic Lyme disease.
http://www.columbia-lyme.org/research/lymetbd_center.html

Plus Jie Feng, Ying Zhang, Kim Lewis, Judith Miklossy & so many more who are showcased in our chronic Lyme section – thank you sooo much for everything you do!

Also to Assoc Nutritional Medicine (AONM) for holding such excellent conferences on chronic illness, Betterhealthguy (US) for attending conferences & reporting back on them in such great details, Joanne D for keeping the awareness flame alive, the girls at Lyme UK Discussion Group, plus all the charities & support groups around the world big AND small & the volunteers who work behind the scenes to keep them going. Also thanks to all the Lyme specialists & scientists who attend conferences & share their much valued knowledge & expertise, those who strive to search for borrelia by microscope even in seronegative patients & finally to John Caudwell for sticking to his guns & getting that charity started – THANK YOU!

Have a Safe Winter Everyone xxx

Read Full Post »

Updates Autumn 2015

2015 has certainly been an interesting year for sure. Some promising research is starting to emerge & who knows, may lead to advances in testing & treatment of both acute & chronic cases of Lyme disease. A mass of conferences have been taking place including traditional, alternative & integrative therapies. As a patient it can’t come soon enough. Let’s hope forward momentum can continue for the sake of all the sick patients out there who’s only desire is to get better & lead a normal or near normal life as can be.

I continually update our conferences section (see Lyme conf in right hand menu) & would like to draw attention to the following new events coming up..

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, Univ 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

ILADS – Lyme Fundamentals Oct 15th Florida, USA followed by ILADS International Conf Oct 16-18th: http://www.ilads.org/lyme_programs/ilads-conferences.php

Lyme Disease Assoc/Columbia Univ, Lyme & Other Tick-Borne Diseases: Science Bridging the Gap, Nov 14-15th, Rhode Island USA: http://www.lymediseaseassociation.org/index.php/general-information-2015

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

If you are an alternative practitioner we have an open letter available on our site (the first part incs conferences mentioned above, the main part of the article is further down the page at: https://ticktalkireland.wordpress.com/2015/02/13/open-letter-to-herbalists/)

Some new research coming out focuses on persistence of infection – the promising thing is, not only are they looking at why borrelia is persistent they are also making progress on finding which FDA approved drugs can be used to combat it. Some of the new research incs the following:

Identification of new compounds with high activity against stationary phase Borrelia burgdorferi from the NCI compound collection:

Emerging Microbes & Infections (2015) 4, e31; doi:10.1038/emi.2015.31
Published online 3 June 2015 Jie Feng, Wanliang Shi, Shuo Zhang and Ying Zhang

We identified the top 30 new active hits, including the top six anthracycline antibiotics daunomycin 3-oxime, dimethyldaunomycin, daunomycin, NSC299187, NSC363998 and nogalamycin, along with other compounds, including prodigiosin, mitomycin, nanaomycin and dactinomycin, as having excellent activity against B. burgdorferi stationary phase culture. The anthracycline or anthraquinone compounds, which are known to have both anti-cancer and antibacterial activities, also had high activity against growing B. burgdorferi with low minimum inhibitory concentration.

http://www.nature.com/emi/journal/v4/n6/full/emi201531a.html

Borrelia burgdorferi, the causative agent of Lyme disease, forms drug-tolerant persister cells.

American Soc Microbiology 26 May 2015, doi: 10.1128/AAC.00864-15
Bijaya Sharma1, Autumn V. Brown1, Nicole E. Matluck1, Linden T. Hu2 and Kim Lewis

Daptomycin, a membrane-active bactericidal antibiotic, killed stationary phase cells, but not persisters. Mitomycin C, an anti-cancer agent that forms adducts with DNA, killed persisters and eradicated both growing and stationary cultures of B. burgdorferi. Finally, we examined the ability of pulse-dosing an antibiotic to eliminate persisters. After addition of ceftriaxone, the antibiotic was washed away, surviving persisters were allowed to resuscitate, and antibiotic was added again. Four pulse-doses of ceftriaxone killed persisters, eradicating all live bacteria in the culture.

http://aac.asm.org/content/early/2015/05/20/AAC.00864-15.abstract

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

Jie Feng, Paul G. Auwaerter, Ying Zhang
PLOS Published: March 25, 2015 / DOI: 10.1371/journal.pone.0117207

Of studied drugs, daptomycin was the common element in the most active regimens when combined with doxycycline plus either beta-lactams (cefoperazone or carbenicillin) or an energy inhibitor (clofazimine). Daptomycin plus doxycycline and cefoperazone eradicated the most resistant microcolony form of B. burgdorferi persisters and did not yield viable spirochetes upon subculturing, suggesting durable killing that was not achieved by any other two or three drug combinations.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

Persistence will be the topic of discussion in LDA (UK) conf coming up at the Univ of Cambridge (see conf list above or in right hand menu for more details).

To see loads more studies on persistence check out our links section on the site at: https://ticktalkireland.wordpress.com/facebook-contents-page/chronic-lyme/

A promising new test is being developed in Europe called Hilysens, phase 2 of development is now under way, for more details check out: http://hilysensproject.eu/index.php

I have recently updated our Western Blot Comparison sheet to include Porton Down UK – the file can be downloaded at: https://ticktalkireland.files.wordpress.com/2015/09/wb-comparison-by-jenny-update-2015.xls

For many studies & a look at other tests available check out our section on testing at: https://ticktalkireland.wordpress.com/lyme-links/testing/

Finally, a reminder of who’s to blame for our ills! Here some pics of ticks as a visual reminder to watch out for, although some docs feel that Lyme disease isn’t a problem in Ireland sadly the truth is that there are many more out there than people realise. From our survey of 104 people up to May 2014 When asked which country the tick-borne infection took place, 61% of our respondents were infected in Ireland and 22% in North America. The remaining 17% listed Europe as their source of infection.

If a doctor was to believe that Lyme can only be contracted in America then they would miss 78% of our respondents who were infected in Europe with the majority getting sick after tick bites here in Ireland. For a look at the full results of our surveys check out: http://www.ticktalkireland.org/surveys.html

These are still ongoing & new results will be published towards the end of this year. Please also note our ‘Tick Talking while You’re Walking’ survey where members of the public report in ticks being seen (no guarantee that these are infected ticks but does show where clusters are) – Counties Galway, Kerry, Wicklow & Cork continually show high in the rankings although it’s worth mentioning that many parts of Ireland are reporting ticks, even in gardens & being brought into houses by pets. Here’s a few photos of ticks being reported over the last few years:

Ticks found on a hunting dog in County Meath Jun 2015

Tick found at Crodaun Park Sept 2014

Ticks from a Deer Alliance awareness session Nov 2011

Ticks found at Portumna Forest Sept 2011

& Portumna again in 2012..

For more tick images check out our main site at: http://www.ticktalkireland.org/ticks.html

Meanwhile, studies relevant to tick-borne diseases in Ireland can be found at: https://ticktalkireland.wordpress.com/irish-related-studies/

Read Full Post »

Lyme Awareness Apr 2015

The 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 Book – 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!

Read Full Post »

What we’ve been up to!

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/

*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 in 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….

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….

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……

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:

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….

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/)

Read Full Post »

Hidden in Plain Sight!

Hidden in Plain Sight

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/

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?!

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.

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.

Read Full Post »

Medical Card Review

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

Read Full Post »

Survey Results 2014

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.

Read Full Post »

Happy Easter!

Happy Easter everyone!

A time of getting together & celebrating the warming weather. Whilst enjoying the beautiful blossom on the trees & catching up with the dreaded weeding & lawn mowing (how those dandelions grow!), here’s some quick tips on preventing tick-bites & protecting your garden.

Protecting your children:

Look out for tick repellents for sensitive skin or natural products or DEET with lower strength can be used but may need to be applied regularly. Check your children at regular intervals for anything crawling on them as they may be looking for a spot to feed. Remember that ticks can be very tiny, the nymphs are about the size of a poppy seed & adults the size of a sesame seed. They are very flat & may look blackish or red & black when unfed, as they begin to feed they begin to puff up like a raisin or sultana & can change colour to various tones of blues or greys. If you see a tick crawling & flat it is unlikely that it has bitten anyone but do keep a look out for anymore that may have gone unnoticed. Behind the ear, hairline, back of neck, back of knees & even groin area can be favourite places for ticks to hide.

If you see a tick attached to the skin find some fine tipped tweezers & remove gently keeping the tweezers as close to the skin as possible to ensure the head parts are removed cleanly. Wipe the area clean with an antiseptic wipe, place the tick in a clear sealable plastic bag (a freezer bag or similar) & write on it the date of the tick bite. This may be helpful if symptoms do occur. Tick removal tools such as tick twisters are great tools for removing ticks on humans & pets as well. If you have no removal tools or tweezers to hand, you can try fine cotton wrapped as a noose around the base of the tick’s body, again keeping close to the skin to remove the head, as leaving the head behind may cause secondary infection.

If a tick has bitten your child please keep a look out for symptoms. It may take days or weeks for symptoms to develop. Not every tick will be infected but it’s worth taking watchful care anyway to prevent a more serious disease developing further down the line. First signs of disease may be a summertime flu, excessive tiredness when the child is normally lively, feeling of being unwell & achy, a rash that may expand outwards from a central ring & begin to take the shape of a dartboard. Not all patients will notice or have a rash (& sometimes the rash may appear more uniform rather than in rings) so if your child feels unwell after a known tick bite it is worth seeking medical advice. Also if your child has a rash but otherwise has no other symptoms do still seek advice as at this early stage of infection it is highly treatable with antibiotics. (Please note that some reddening may occur at the site of the bite which may just be irritation. A Lyme rash tends to develop days later & begin to spread outwards from the centre)..

If left to spread throughout the body more complications can occur such as developmental problems, severe headaches, difficulty concentrating, poor sleep, neurological symptoms such as tingling & numbness plus muscle aches & joint pains.

We don’t want parents to panic but just to be aware of the dangers of ticks.

Hot spot areas for ticks tend to be in national parks areas (eg Glenveagh, Killarney, Connemara, Portumna & Wicklow) where there are high concentrations of birds, mice, other small mammals, deer, humans & pets. Ticks can be carried by many animals & birds & are attracted to Carbon dioxide so families & their pets can be unwitting hosts to a hungry tick! Please note however that from our own online tick survey that people are reporting ticks in burren land, near lakes as well as gardens, so forested areas are not the only spaces to watch out for ticks. Farm owners are also at risk, as well as hill walkers, campers, hunters, runners & pet walkers too!

Ticks collected in Portumna Forest, Ireland

Protecting Yourself & Pets:

Pets can be treated with flea & tick repellants however it’s worth checking them regularly as it has been known for pets to still carry ticks on their fur into the house even when treated (from personal experience!) Be careful with cats as some products for using on dogs is highly toxic to cats. For humans, DEET products are recommended however this may not be 100% effective (as reported by a tick researcher in the US) so may need to still be vigilant & check your outer clothes immediately after a walk & underneath clothing as soon as you get home.

Ticks can survive water (they can survive a wash cycle for example) however they struggle with dry heat so a suggestion is to put any clothes that may harbour ticks into a hot dryer for at least 20 minutes. If ticks are found on you or pets, follow the tips in the children’s section above.. It’s recommended whilst out walking to wear light coloured clothing to see any black specks on you that might be ticks, & tuck trousers into socks as ticks can climb up inside your clothing. Tick bites are painless & usually non itchy so remember to keep checking the site of the bite every day for several weeks, as the bulls-eye rash associated with Lyme disease can & may take weeks to develop. If no rash is present but other symptoms occur (such as summertime flu, bell’s palsy (paralysis on one side of the face) or severe meningitis type headaches) do get checked out by the doctor, early diagnosis & treatment is vital to prevent more serious disease. Lyme can develop in stages & worsen over time so even if symptoms are mild initially it’s still worth getting checked out, especially if you have a known tick bite. Record the date of any bites that occurred & if possible keep the tick in a sealed bag or container to show the doc if symptoms do occur..

A great link on tick removal tips available at: http://www.ticktalkireland.org/howtoremoveaticksafely.html

This page has pictures of lyme rash to look out for: http://www.ticktalkireland.org/faq.html#lymerash

Protecting Your Garden:

Ticks are hardy creatures & can survive very cold spells (as long as they have some snow or leaf cover) & can survive very wet conditions but dryness can kill them. To survive they climb up to the end of blades of grasses waiting for hosts to brush by until they start to dehydrate (dessicate) at which point they move back down into the base of the grass to be shaded & retain moisture. This means that lawns kept very short with any leaves & wood piles cleared away should help deter ticks. Also paths around the edge or gravel type borders can help deter them. Plants can help deter ticks such as Lavender, Rosemary, Sage, Marigolds & Rose Geraniums. If possible avoid too much bird food on the ground as this can attract ticks for several reasons, mice may be attracted to the dropped bird food & they can carry ticks, ground feeding birds such as robins & thrushes are a popular way for ticks to hitch a ride & hedgehogs too can bring ticks into the garden as well as squirrels.

A great link on protection is available at: https://ticktalkireland.wordpress.com/lyme-links/prevention/

Permethrin can also be used on clothing (although not directly on skin). It can withstand several washes so ideal for camping or hiking. This site has a selection of different tick repellant products http://www.purpleturtle.co.uk/acatalog/Ticks.html

If you have a permethrin spray be careful near cats as can be very toxic: http://www.icatcare.org/permethrin/owner-info

Lyme Wifey has some great tips also on protecting your garden..
http://lymeywifey.blogspot.co.uk/2014/04/tick-tubes.html

More Info

Check out our FAQ page for more info on lyme disease http://www.ticktalkireland.org/faq.html

We have a leaflet available for anyone who would like one. Single copies can be downloaded at http://www.ticktalkireland.org/lymeleafletsept2013.pdf (PDF).

If you can help distribute leaflets in your area at librairies, family centres, youth clubs, vets etc etc feel free to drop us a line using our contact us page.

Tick Awareness Week

Did you know that the Health protection & surveillance centre has marked the week of 19th-23rd May as tick awareness week? Keep an eye out in newspapers for articles. For information available on their site check out http://www.hpsc.ie/hpsc/A-Z/Vectorborne/LymeDisease/

Also the HSE has some information at http://www.hse.ie/eng/health/az/L/Lyme-disease/

Our main website has lots of information on symptoms & testing http://www.ticktalkireland.org/index.html

Two other great sites are: BADA & LDA (both in UK).

For anyone studying Lyme, doctors who’d like to learn more, students or scientists or interested patients we have an extensive links section on our site covering everything from Lyme & the eyes, Lyme & the heart, Lyme rashes, connections between MS, ME & Parkinson’s, seronegativity, persistence, borrelia (Lyme causing bacteria) under the microscope & so much more https://ticktalkireland.wordpress.com/lyme-links/

How bad is Lyme disease in Ireland?

Cases are cited between 50-100 cases per year. This may seem small, however we feel that due to overlapping conditions with progressive illnesses such as ME, MS & Parkinson’s that many diagnoses may have been missed. Some may not realise that Lyme can be picked up in Ireland & therefore testing is not initiated by the doctor or symptoms may not be tied to a previous tick bite by the patients themselves. Some patients may miss stage one of the disease & go on to suffer with disseminated Lyme years later making diagnosis difficult. Blood testing if done too soon can be false negative (as it may take 4-6 weeks to develop enough antibodies). Those infected a long time may even have a depleted immune system affecting tests results especially if infected with other conditions that can be carried by ticks. Antibiotics can affect results & different strains may throw up different results on the bands used for blood testing, causing confusion when interpreting results. Therefore patients may not be tested at all or false negative results may lead to not all cases being reported or treated.

In studies by Prof Gray in 1996 he found that of ticks collected in Killarney National Park Co Kerry, up to 29% of them were carrying borrelia (that causes Lyme disease). Some people who are bitten maybe carrying the bug without any problem & become silent carriers. However a knock in the immune system such as after a traumatic event (car accident, stressful life event, another illness or even surgery) can cause the infection to bubble up. So we feel that it is worth taking precautions & it’s worth being aware of the possible dangers to protect you & your family!

Luna Rising!

Last year Tick Talk Ireland’s co-founder Jenny O’Dea wrote a book for children called the Adventures of Luna & Dips. Initially it was a bit of fun to fill a bit of time during sleepless nights(!) but on fruition the story was transformed into a book complete with wonderful illustrations by Dave Farrelly. Having received funding (with huge thanks) we distributed more than 2500 books across schools in Ireland, & some libraries complete with poster & informational pack.

Although we’re out of copies the book is still available to read on the following site: http://www.scribd.com/doc/138970319/Adventures-of-Luna-Dips (registered members can download the copy however it can be read without subscribing just by scrolling down the page to move through the chapters).

We also have a poster available at: http://www.scribd.com/doc/138974973/Luna-Poster?secret_password=1fnt40cczjf4bpwg4g1k

For any parents reading this they may also like our colouring posters available on the following page: https://ticktalkireland.wordpress.com/2012/06/27/if-ticks-could-talk-contents-page/

May Meetup!

Are you a Lyme sufferer in Ireland? Or not yet diagnosed but wanting advice? Why not head on down to the Anner Hotel in Thurles on 18th May! 20 or more patients are meeting up for a meal in a private setting.

If you’d like to come & join in we can be emailed via info(AT)ticktalkireland.org (replace AT with @ before sending) & we can forward this onto the organisers for you. Numbers to be in by May 11th.

Surveys:

We have rolling surveys for anyone to complete. These are for members of the public who spot ticks anywhere in Ireland to report where they found them, how many, in what type of location etc. Plus a survey for vets if they come across ticks in animals being brought in, and a survey for those visiting national parks to assess what information they have for the public.

Also a survey for Lyme patients to report back on their symptoms, how they were diagnosed & how long it took for diagnosis. The next set of results should be available later this year. To access our surveys & results so far head on down to http://www.ticktalkireland.org/surveys.html

Radio Head!

Jenny O’Dea from Tick Talk & Nicola Seal from the Lymewifey blog in scotland were asked to talk on Katina Makris’ popular Lyme related chat show.

The interview can be listened to at: http://thedrpatshow.com/shows/mak-140402-odea.mp3

Katina is the author of her book Out of the Woods, being a Lyme sufferer herself she supports advocacy & awareness.

Her other radio links including some great lyme specialists & advocates can be found at: http://www.thedrpatshow.com/searchshowsAll.php?search=katina+makris&x=-951&y=-98

Conferences:

Spring is a very busy time of year for ticks (they wake up hungry) & Lyme awareness too! May is Lyme awareness Month across the world. In April, May & June there are conferences taking place in Germany, London & Norway. For more information head on down to: http://lymeywifey.blogspot.co.uk/2014/04/a-trio-of-fantabulous-european-lyme.html

This is all our newsy information for the moment. A new blog post will follow during May. Meanwhile we wish you a Happy Easter 🙂

Read Full Post »

News Update Spring 2013

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
_______________________________________________________________________________________________________________________________________________________________

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.
_______________________________________________________________________________________________________________________________________________________________

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)

_______________________________________________________________________________________________________________________________________________________________

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!
_______________________________________________________________________________________________________________________________________________________________

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!

Read Full Post »

Spring 2012 news!

Welcome to our news updates for Spring 2012!

The weather is warming, the ticks are stirring, time to take precautions!!

No need to fear nature but knowing what lurks out there can make all the difference. Knowledge is power. To learn how to protect yourself from ticks check out our site at: Preventing Tick Bites

Remember, A Tick in Time Saves Lyme!

Tick Bite Prevention Week

BADA-UK have kick started their Tick Bite Prevention Week (runs from 26th March – 1st April 2012. For great tips on how to protect yourself, children & pets head on down to: Tick Bite Prevention Week

Surveys

Spot any ticks this Spring or Summer? Why not fill in our survey showing ticks being spotted across Ireland? This will help to highlight high risk areas. For links to our previous results plus links to complete new surveys go to:

New Surveys
Results from past Surveys

Education

Do you like to walk, camp, hunt, spend time in the country? Are you a farmer, hunter or scout leader. Or maybe a scientist, medical professional, herbalist, vet surgeon, vet nurse or politician? Perhaps you’re a confirmed or suspected Lyme disease patient. Would you like to learn more about Lyme disease, ie how to prevent lyme, how to spot high risk areas, find out about tick-borne infection in animals, hear about testing, traditional, alternative & suportive remedies & ways to tackle chronic infection? Why not come down to our lyme disease conference to find out more? Tickets available at 20 euro for half day Tuesday 5th June & 40 euro for full day Wednesday 6th June. (A reduced rate of 50 euro is available for both days). Early bird prices are valid until March 31st. To learn more about our conference including details on agenda, speakers profiles, bookings & local accomodation check out our site at: Lyme Disease Conference

NB: Please note that CPD (continuinig professional development credits) have been approved for biologists, GP’s, vets & veterinary nurses..CPD Accreditation

Fundraising

May is International lyme awarness month

We’re currently looking for folks willing to undertake small projects across the country for fundriasing & raising awareness. Maybe hold a green theme Friday, everyone at work or school have to wear green clothes. Or maybe buy a selection of awareness ribbons & sell them at work. Anyone daring enough to die their hair green in aid of Lyme sufferers? Perhaps persuade your local street to Go Green for Lyme with posters, flyers & leaflets. Maybe a sponsored stroll, coffee morning or local showing of our lyme awareness presentation (not available online but can mail a copy on request).

Note for fundraisers remember to take photos for our web page!

Also wanted..

Runners for the Flora Marathon
Folks willing to Parachute Jump in aid of Tick Talk
Raffle prizes for our June Conference
Folks willing to distribute conference flyers
Folks to distribute Lyme in Ireland leaflets to vets, doctors, medical centres, hospitals, national parks & librairies – Contact Us with your mailing address

Letter of Concern

March 2012 Tick Tak Ireland lodged a letter of concern regarding issues faced by Lyme Disease Patients Uk & Ireland. This was sent to the Minister of Health & Children Dr James Reilly, Dr Paul McKeown of the Health & Protection Surveillance Centre & the Director of the European Centre for Disease Prevention & Control. David Cameron PM for the UK will also received a copy in due course.

For a look at our concerns covering recognition, testing, persistence, co-infections (see appendix), transmission & guidelines click on the following links below:

Letter of Concern
Coinfections UK & Ireland

Testing is so confusing!

Tick Talk has put together a Western Blot comparison xls. This highlights differences between the CDC criteria (US) to Igenex labs to Scottish Labs & from German MiQ 12 2000 criteria to rest of Europe MiQ 12 2000.

Types of bands & number of bands required for a positive are all different. This highlights exactly why tests are so confusing! Remember, the test kit manufacturers themselves say a negative does not rule out a diagnosis of Lyme Disease.

Trinity Biotech test kit states “The diagnosis of Lyme disease must be made based on history, signs (such as erythema migrans), symptoms, and other laboratory data, in addition to the presence of antibodies to B. burgdorferi.

*Negative results (either first- or second step*) should not be used to exclude Lyme disease.*

*NB first step – Elisa, 2nd step – Western Blot..

Some reasons for the possible pitfalls with Elisa testing per the kit manufacturer’s notes include the following…

*B. burgdorferi is antigenically complex with strains that vary considerably.

*Early antibody responses often are to flagellin, which has cross-reactive components.

*Patients in early stages of infection may not produce detectable levels of antibody.

*Early antibiotic therapy after EM may diminish or abrogate good antibody response.

Thus, (in their own words) “serological tests for antibodies to B. burgdorferi are known to have low sensitivity and specificity, and because of such inaccuracy, these test cannot be relied upon for establishing a diagnosis of Lyme disease”.

Lyme is a clinical diagnosis & according to the CDC the 2 tier testing is only meant for surveillance criteria & it is not intended to be used in clinical diagnosis..

Time to Listen

Isn’t it time we looked at ways to improve the lives of patients?

I’d like to quote from a 2003 article “The Lyme Wars: Time to Listen” by Raphael B Stricker† & Andrew Lautin

†Department of Medicine, California Pacific Medical Center, San Francisco, CA, USA

“Lyme disease remains a public health threat of major proportions. Continued trivialisation of this complex spirochetal illness only serves to augment the threat by legitimising ignorance of Lyme disease and neglect of Lyme disease patients. Until this trend is reversed, we will continue to see thousands of patients suffering at the hands of the medical establishment and desperately seeking care from the few providers who will listen. As modern medicine rockets into the 21st Century, this ostracism of suffering patients and persecution of dissenting healthcare providers can no longer be tolerated. For their part, Lyme disease patients and their providers must learn from the AIDS experience, where activism brought change when it was perceived that nobody was listening. And as more people listen, the ‘Lyme Wars’ may finally reach an end.”

Let’s hope through dialogue & research changes can be made soon!

For details on persistence & seronegativity check out our blog post: Persistence & Seronegativity

Read Full Post »