Posts Tagged ‘Lyme test’


Lyme Disease has been stuck in stale mate for many years. Chronic Lyme denialists often go head to head with chronic Lyme sufferers & decisions over length & type of treatment becomes an issue for many. As covered in our latest blog post the struggle of Lyme patients has been likened to the AIDS movement.

It’s very promising that due to much hard work & perseverence of Lyme communities around the world (with the help of philanthropists too), we may actually be getting somewhere!

Recent Advances:

Stand4Lyme Foundation has partnered with the Stanford School of Medicine’s Lyme Disease Working Group (SLWG), which includes collaboration with Harvard, Johns Hopkins and Columbia. Through research they hope to improve testing & treatment for Lyme disease patients with a bid to ‘Making Lyme History’

More details at:

or check out this 20 minute video for more information

Researchers investigate four promising new treatments for Lyme disease

March 29, 2016 by Thea Singer

When North­eastern researchers reported last May how the bac­terium that causes the dis­ease evades antibi­otics, sug­gesting new treat­ments, the media and the gen­eral public took notice.

Uni­ver­sity Dis­tin­guished Pro­fessor Kim Lewis, who leads the Lyme dis­ease research team, is now expanding that ther­a­peutic reach with the help of a $1.5 mil­lion grant from the Steven and Alexandra Cohen Foundation.

The team is pur­suing four arms of treatment-related research at Northeastern’s Antimi­cro­bial Dis­covery Center, which Lewis directs.

More on the article available at:

Utah drug research company, Curza, takes aim at Lyme disease

By Chris Miller Wednesday, August 26th 2015

(KUTV) Curza, a Provo-based pharmaceutical research company, is on the cusp of a medical breakthrough that could treat victims of chronic Lyme disease.

The company is entering phase two of clinical research on their newly designed antibiotic called CZ-99. They’ll soon be testing the drug on infected mice at the University of California, Davis.

An initial clinical trial at the University of New Haven in Connecticut, found CZ-99 to be 60 percent more effective in treating Lyme disease than the traditional antibiotics used to treat the illness.

Curza CEO Ryan Davies says they have a patent on a technology used to penetrate bacteria’s protective outer layer, or biofilm, making its new antibiotic more effective than outdated medications.

More at: http://kutv.com/news/local/utah-drug-research-company-curza-takes-aim-at-lyme-disease

The Connecticut Department of Health has granted the Ridgefield Health Department $100,000 for the 2015-16 fiscal year and $225,000 for the 2016-17 year for education efforts based on its BLAST Lyme program.

My Lyme Data – new project by US based Lyme Disease Association will be following chronically sick patients long term to assess their response to treatment. https://www.lymedisease.org/mylymedata/

UK scientist speaks out about chronic Lyme disease & problems with testing

Sadly we have news too of a recent death of a businesswoman who became very ill after contracting Lyme disease https://www.timesoftunbridgewells.co.uk/popular-businesswoman-loses-her-fight-against-lyme-disease/

Loads of info on chronic lyme available here

Scientists Thinking outside the box:

Treating early Lyme with Cimetidine: http://www.medical-hypotheses.com/article/S0306-9877%2816%2930007-X/abstract

Treating Lyme with Claritin: http://www.pharmacytimes.com/news/could-claritin-cure-lyme-disease

Using Cancer Drugs: Mit­o­mycin C, com­pletely erad­i­cated cul­tures of the Lyme bac­terium [inc persisters] in one fell swoop. Lewis stressed that, given Mit­o­mycin C’s tox­i­city, it isn’t rec­om­mended for treating Lyme dis­ease, though his team’s find­ings are useful to helping to better under­stand the disease. https://www.sciencedaily.com/releases/2015/06/150601112236.htm

Our latest blog post covers various scientists at the cutting edge of discovery (see bottom of post)

New charities in the UK:

Lyme Aid UK: http://www.lymeaiduk.com/
Vis-a-Vis Symposiums: http://www.visavissymposiums.org/
VIRAS: http://www.counsellingme.com/VIRAS/VIRAS.html
Caudwell Lyme Charity: https://caudwell-lyme.net/about/

Newly added Sep 2016: About Time for Lyme: http://www.abouttimeforlyme.com/


Lyme Disease Action: http://www.lymediseaseaction.org.uk/what-we-are-doing/newsletters/
Lyme Discussion UK: http://lymediseaseuk.com/tag/lduk-newsletter/

Development of UK guidelines:

LDA: http://www.lymediseaseaction.org.uk/resources/guidelines/nice-guideline/
LDUK: http://lymediseaseuk.com/2016/02/24/nice-lyme-disease-guidelines-stakeholder-workshop/
VIRAS: http://counsellingme.com/VIRAS/VIRAS.html

So why do guidelines matter? Well for years health authorities worldwide sided with Infectious Disease Society of America (IDSA), endorsed by the US Centre of Disease Control (CDC) these guidelines are no longer in the Guideline Clearance House due to being outdated & new guidelines are not expected for another 2-5 years. The IDSA guidelines were subject to a Lyme hearing & attracted much controversy. Doctors are discouraged to use International Lyme & Associated Disease Society (ILADS) guidelines despite being updated & current in the Guidelines Clearing House.

Some states in the USA have passed legislation to allow doctors to treat openly using whichever guideline they prefer:

As can be seen by this article CDC/IDSA guidelines can fail patients http://www.huffingtonpost.com/dana-parish/where-cdc-guidelines-fail-leading-lyme-doctor-succeeds-part-1_b_9318660.html

It’s interesting that doctors themselves can even find getting tested & treated adequately is problematic, celebrities & entrepreneurs too, so it’s easy to see that no matter what you’re background is, or however hard you’ve worked all your life you could be hit too.

Advances in testing:

Univ Vienna: https://www.sciencedaily.com/releases/2016/04/160425095342.htm
Hilysens II: http://hilysensproject.eu/index.php
Jenna, 2 new tests: http://jennaslymeblog.com/two-new-lyme-tests/

It’s All in Your Head: question mark

Recently there was a book called ‘It’s All in Your Head’ by Suzanne O’Sullivan, the subject being Imaginary Illness. Sadly Lyme disease (in particular chronic Lyme) is considered an Imaginary Illness by many. Why? Because antibody testing can miss some cases – due to no infection being found it’s considered that patients may be attention seeking or depressed. We can see from our ongoing surveys that those diagnosed with depression/psychiatric illness had gone up from 7 to 14 people between 2011 & 2012. This is a worrying trend. We have news that Simon Wessley (the psychiatrist at the heart of many a debate on ME/CFS) is being invited to take part in shaping Lyme disease guidelines. The aim is to ‘disengage’ patients with unproven Lyme disease. However we know that no test at the moment is sensitive enough to ‘disprove’ a Lyme diagnosis.

NB: We cover testing in great detail in our web site looking at various pitfalls that arise when looking for a Lyme infection. For a more summarised view check out our article called ‘Issues Surrounding Testing‘ (PDF).


Tick Talk has rolling surveys with 2016 results due to be published soon. To view the latest results (currently up to May 2014), head on down to http://www.ticktalkireland.org/surveys.html

Want to learn more about Lyme disease? Check out our extensive links section for more… https://ticktalkireland.wordpress.com/lyme-links/

Lyme Awareness Week: I leave you with notice that Ireland’s Health Protection & Surveillance Centre are planning to kick off Lyme awareness week from beg of 2nd May 2016. This is an annual event where newspapers warn the public about Lyme prevention. Sadly chronic illness is seldom covered but due to the fact that Lyme is much more successfully treated if caught early, it will hopefully prevent a more insidious disease creeping in.

For articles related to Ireland check out the following sections:

Irish studies: https://ticktalkireland.wordpress.com/irish-related-studies/
Irish news: https://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/
Irish radio: https://ticktalkireland.wordpress.com/lyme-links/lyme-on-radio/

Lyme Prevention Book

Check out Tick Talk Ireland’s Lyme Prevention Book – ‘The Adventures of Luna & Dips’ (tick). Nicely illustrated & all proceeds go towards keeping our websites functioning. Available worldwide & able to be viewed on various devices using an amazon app..

luna front cover

luna back cover

Take care this Spring & Summer 🙂


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Things are getting frosty around here!

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).

horowitzAs 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 documentThe Big Lyme DebateMinutes from meeting with HPSC, ..

luna front coverluna back cover

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..
looking glass

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..


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.

clipboard72 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:

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:

holly 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.

holly 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..

holly 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.

holly 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/

holly 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

holly 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.

holly 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.

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 xxxSanta Waving Through a Circle

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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.


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.


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.


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

hunting dog jun 2015 meath

Tick found at Crodaun Park Sept 2014

Crodaun Park Niall Sep 2014

Ticks from a Deer Alliance awareness session Nov 2011

Deer Alliance Nov 2011 1

Ticks found at Portumna Forest Sept 2011

15 ticks Portumna Sep 18 2011_1

& Portumna again in 2012..

Portumna adult female_engorged nymph

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/

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

New Article – Health & Safety in the Countryside


New Article – Issues Surrounding Antibody Testing


New Article – Does Lyme Exist in Ireland?


New Kindle Booluna front coverk – Adventures of Luna & Dips

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


Updated Article – Newcomer’s Guide for 2015


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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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

“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)


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.


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/


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.


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)


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.


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/


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…

*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..


*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)…


*Or for natural antibiotics check out our link at:


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


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:


(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!


What has Tick Talk been up to?


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



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)


Accompanying Poster


Conference June 2012….

pic by Mary Smyth

Irish Lyme Conf 2012: pic by Mary Smyth

Irish Lyme Disease Conference Dublin June 2012

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

Leaflets & Handouts….

Portumna larval 2
Irish Lyme Leaflet


Information Handout

School Info Sheet

Download Symptoms Chart


Letter to the Medical Card Review Team June 2014

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!




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/


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


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





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.


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

2014 results avail at:

2012 results avail at:

2011 results avail at:

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:



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!


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


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/)


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