Started in 2009, Tick Talk Ireland began as a support group on Facebook. Later the blog site was formed and resources gathered to help spread awareness and information about the peculiar and complex world of Lyme disease.

This blog site has since been retired however here contains a lot of useful information for your perusal including links to the many aspects of Lyme suited to doctors, scientists and curious patients.

Support groups links and Tick Talk articles are available in the right hand menu or click here for some Irish related studies.

Please do stay a while but it’s worth mentioning that as the internet changes, so do links, so you may come across some broken ones along the way.

Please also note that Tick Talk has made some changes too so if you see the logos posted below, please note that both are the property of Tick Talk Ireland. Enjoy your read!

P.S. For our main site go to: http://ticktalkireland.org/


Tick Talk Ireland Logo New      Tick Talk Ireland Logo Old

Autumn updates 2016

Living with Lyme Documentary

We have exciting news of an upcoming documentary, ‘Living with Lyme Disease’ which will be broadcast on Tuesday October 11th 2016 at 2100hrs(9pm) on IrishTV, Channel 191, Freest 400, irishtv.ie.

This will be available in Northern Ireland and The UK & will also be going out on other channels worldwide on Irish TV.

The documentary was put together by Lyme sufferer James Pembroke & Irish TV’s Brian Hurley. An interesting interview by Nicci St. George Smith, another Lyme sufferer is available here, she asked the guys what inspired them to put together the documentary:


Concerns over Killarney

As can be seen in the news article below, Lyme is a serious concern here in Ireland as ticks are abundant. A father recently described how his young children were bitten in Killarney National Park, one of the high risk areas in Ireland & the father is calling for warning signs to be erected in National Park areas. http://www.killarneytoday.com/father-wants-alert-signs-erected-in-national-park

As indicated by this recent news article ticks are becoming an increasing worry in Killarney: http://www.killarneytoday.com/ticks-in-the-park-could-run-to-billions/

This recent scare among juvenile rowers shows that anyone young or old can be affected: http://www.killarneytoday.com/juvenile-rowers-being-treated-for-lyme-disease/

A Tick Talk Ireland volunteer was successful in getting a warning sign put up at Killarney Children’s Playground, however it has been a struggle to get notices placed in National Parks. The dept of the Environment in communication with them said it was the role of the Health Protection & Surveillance Centre (HPSC), meanwhile the HPSC have designed leaflets & posters to warn the public but indicated they are intended for online use only with no plans to print them.

Sadly this means folks visiting high risk areas are just not being warned sufficiently enough to check themselves during & after walks & to take preventative measures (such as tucking trousers into socks, sticking to footpaths & staying away from grassy areas, applying repellents on the family & pets, plus doing a full body check once reaching home).

Of course, these things would be obvious once you know about the risks of tick bites but not being warned in the first place means folks wouldn’t even think to protect themselves.

Meanwhile, Lyme sufferer Nicola Lavin in this TV interview explains just how devastating a missed diagnosis can be (Pls note this clip may only be available for up to a month): //www.tv3.ie/3player/show/800/113009/1/Sunday%20AM


Killarney Risk Map

Valerie Heffernan, during her MSc at University College Cork did a thesis entitled “The application of spatial analytical approaches to determine Lyme disease areas.”

As part of this she put together an excellent map of high risk areas in Killarney National Park  (PDF).

Valerie says ‘The tick habitats were detected using satellite imagery, recorded on the 19th of April 2015, the 11th of July 2013 and the 7th of September 2014 which were acquired from the Landsat 8 (OLI) sensor. These images produced a clear overview of vegetation density in the National Park during the spring, summer and autumn months. This was followed by analysing water polygons, soil type, height data and geology within the Killarney National Park boundary. Buffers were created around the water polygons and merged with coniferous and mixed forest classes to indicate mammal habitats and therefore the high, medium and low risk areas of contracting Lyme disease.’

Valerie says ‘I decided to do a map on this topic after my sister in law became ill with the disease when visiting Connecticut, USA. I feel that the best way to prevent contracting the disease is through information. I was surprised to find there were no other Lyme disease risk area maps in Ireland and decided to create my own using satellite imagery and image processing of the National Park. I hope that the information I have provided can help reduce further cases of the disease.’

It’s worth mentioning though that ticks travel far & wide (their little legs don’t take them far but they do hitch rides on deer, humans, farm animals, domestic animals & birds so they can be found far & wide across Ireland) – hot spots can occur in regions where there is a large influx of wild animals, domestic animals, humans & birds in one place (ie national & recreational parks).

To see other areas that are affected check out our Tick Talking While You’re walking Survey (this doesn’t indicate whether the ticks are actually infected, but does show where they are being regularly spotted & the times of year they are most often reported)..


Official Figures way off??

Meanwhile, back in May 2016, the HPSC published the latest notifiable Lyme ‘neuroborreliosis’ cases:


As you can see, the numbers are quite small. It’s quite difficult to pin down accurate figures in Ireland, this can be due to the following reasons:

A. the doctor is not familiar with the presenting signs at various stages of the disease & therefore Lyme may not even be considered
B. the patient has early Lyme which may have been treated quickly to prevent neurological Lyme but they are still a case & should be recorded (notifiable status curently ONLY records neurological cases)
C. a patient’s main presentation may not necessarily be neurological
D. the criteria for official notification of cases (pg 55 PDF) require 2 tier testing methodologies, which has been problematic for some as sero-conversion can be incomplete (see our article on Issues Surrounding Testing PDF for more details)
E. some patients who don’t emit enough antibodies may have more success using T cell (antigen type testing) from overseas, however these cases may not be counted, as they are outside the 2 tier (antibody) test system
F. clinically diagnosed cases (where tests are negative but suspicions still high based on history of tick bites, history of bulls-eye rashes etc) are also not recorded
G. there is a concern over whether the current secondary test (Western Blot/Immunoblot) which is offered in Porton Down England is excluding tests for borrelia garinii, which is the strain most associated with neuro borreliosis (there are cross over of symptoms between other strains but this is the one most often linked with neuro Lyme).


Considerable Underestimate says HPSC

In this article the HPSC say ’50 cases per annum would be a considerable underestimate’. 

I do hope that improvements in testing would help us track cases much more efficiently & better still, why not record all stages of the disease, not just the more disseminated neuro cases?

Please note that Lyme is progressive, however some can develop symptoms slowly & some much more quickly. This may depend on strain, state of immune health, number of co-committing infections & so on. The difference in presentation can therefore lead to confusion when seeking a diagnosis as a doctor may remember one case & see a completely different set of symptoms in another!


A look at Irish Studies

To see Irish related studies check out the following:

Does Lyme Exist in Ireland (Tick Talk article PDF)
Irish Scientific Studies (abstracts & links)

A few years ago University of Galway published a Lyme map of cases in the West of Ireland. They showed clusters of cases particularly around the Galway region & Connemara. It would be really good to see more studies taking place, some looking at infection rates in ticks & others looking at infection rate in humans (sadly since Prof Gray retired from Univ College Dublin we simply haven’t had any up to date studies – a prior study in Killarney for instance showed tick infection rates from 11-29%, just where we are now in Killarney & indeed nationally is anyone’s guess.)


IDSA Guidelines Removed

Did you know that the IDSA guidelines are no longer listed on the guidelines clearing house? They are using outdated science & yet the Irish Health Protection & Surveillance Centre, Infectious Diseases Society of Ireland, Irish Society of Clinical Microbiologists, Irish Institute of Clinical Neuroscience and the Irish College of General Practitioners all continue to cite unison (see PDF) with the IDSA (Infectious Diseases Society of America) as being & I quote ‘the best and most effective synthesis of the available evidence on the treatment of Lyme disease.’

Isn’t it time that the ILADS (International Lyme & Associated Disease Society) guidelines be given more respect seeing as they ARE in the guidelines clearing house & use the GRADE system for their guidance?

We do know that there is no one size fits all treatment for Lyme disease & the doctor may need to use his clinical judgement when treating the illness, so quoting a finite number of weeks for treatment with only limited treatment options (as the IDSA guide does) perhaps is not in the patient’s best interest.

Check out the recent petition by a Patient Centered Care Advocacy Group who want to stop preferential treatment using IDSA outdated advice & give patients the option to use ILADS guides where warranted.

We also value the guide written by Dr Burrascano, suggesting treatment options depending on the stage of the disease, various co-infections plus supportive therapies, as a useful source of information…
http://www.ticktalkireland.org/Dr Burrascanos Guide 2008.pdf



Recently, Tick Talk volunteer Ann Maher attended another meeting at the Dail to discuss issues surrounding Lyme disease. Ann says ‘Last year, with the help of my local T.D John McGuinness, we organised a Briefing Session in Leinster house. Many Patients travelled from around the Country and it was amazing. Cross party T.D’s attended at various times during the afternoon.

That Led to our infamous Meeting in June 2015, arranged by former T.D Noel Coonan, with Leo Varadkar, Minister for Health, a few patients were also invited. To say that Meeting was disgraceful, is putting it mildly. We were all very upset (that we weren’t taken seriously).

After our recent election, I emailed Re elected and New T’D.s & received an email from an Taoiseach’s Secretary to say they had forwarded emails to the current Health Minister, Simon Harris. In turn his Secretary forwarded email to Marcella Corcoran Kennedy, Junior minister in Dept of Health & I received a call to say she was interested in a Meeting in the beginning of August 2016.

I attended with Nicci (who did all the videoing for the conference, free of charge), even though she was ill, she agreed to go & a patient from Wicklow, who I met briefly at the conference came too. He and his young Son were just back after having treatment in Germany.

Other attendees at Meeting..
Minister Corcoran Kennedy
Doctor from HSE.
Doctor from HPSC
and another guy taking notes.

Patient from Wicklow told his story of how he and his young son were let down by our Health Service. etc. Nicci told how she had been originally treated for Lyme disease in the states with the Recommended 3 Weeks antibiotics (& she is still very ill)!!

I told them about our small annual Meetings and how they have Grown, to a full Day conference this year! (see pics of past patient meetups & conferences here).

I presented the Minister and Doctor with a small folder-
With information about how the IDSA guidelines are Removed for now, the same flawed guidelines that we follow
Tick Talk information “Lyme disease in Ireland (PDF)
Plus much more information.

They were on about clinical Diagnosis and I told them, if my Bell’s Palsy was recognised in 1997 as a serious symptom of Neuroborreliosis and treated, i wouldn’t still have paralysis in my face and throat.’

As a follow on from that meeting, Ann was invited to join the Vector-Borne Sub Committee Meeting this Autumn as a patient representative. The committee met back in March (PDF) & agreed that ticks are the most dangerous vector in Ireland with Lyme disease ranked as the highest risk. Therefore having someone invited from a Lyme disease group is encouraging although we do feel sad that it took so long to receive an invite. We will keep you posted as we know more!

For other patient led meetings go to:



In our last blog post we sent news of a recent conference called ‘Patients Helping Patients‘. I am pleased to say that a recording has been made available by film maker Nicci St.George Smith which includes snippets of the conference presentations plus some interviews with speakers & patients.

I’m sure you’ll agree that it really captured the atmosphere of the day..

One of the speakers Dr Albin Obiltschnig, a hand surgeon, was a Lyme patient himself & could not work for 2 years, he says all doctors should have experience of Lyme disease & then they would believe more patients.



On the subject of doctors with Lyme, Dr Neil Spector, Lyme sufferer & author of Gone in a Heartbeat who is a medical oncologist and cancer researcher, tells of his story in this amazing Fox news interview on how his diagnosis was missed, due to poor Lyme testing & he nearly went into heart failure as a result.

In a recent letter to the Massachusetts Governor in support of a recent Lyme bill he says ‘I am not a Lyme disease physician. I had to learn more than I ever cared to know about this disease(s) due to my own misdiagnosed case that necessitated a heart transplant and nearly cost me my life.

People in your state and around the country are suffering, falling through the cracks of our medical system.

These folks have Lyme disease and the co-infections that accompany Lyme disease. Similar to the days before the acceptance of h. pylori as a cause of peptic ulcer, there is a dogmatic approach that says that chronic problems from Lyme or co-infections that persist beyond the IDSA algorithm of care does not represent persistent infection. However, based on excellent research from prestigious institutions such as Johns Hopkins Medical Center, hardly a bastion of quackery, we know Borrelia burgdorferi, the bacteria that causes Lyme disease, becomes resistant to the standard antibiotics prescribed according to Infectious Disease Society of America (IDSA) guidelines. We know there is persistent infection in primate studies based on peer reviewed research from scientists at Tulane and other institutions.

The truth is, we have failed our fellow human beings who are suffering by accepting a dogmatic approach that is not founded on solid science.

In 2016, where cancer patients are afforded cutting edge genomic science to guide diagnosis and treatment, Lyme disease diagnostics are still rooted in less than cutting edge and low sensitivity indirect immune response diagnostics (ELISA and Western blot, the latter I have performed hundreds to thousands in my own research so I’m very familiar with the strengths and weaknesses of the assay). This doesn’t take into account the fact there are different variants of Borrelia that might not be detected by current diagnostics.

For the full letter go to: https://www.facebook.com/NeilSpectorMD/posts/827851130649405

Meanwhile to see how Lyme has affected doctor’s & nurses lives (whom many had to struggle for the right for proper treatment) please see the link below: https://ticktalkireland.wordpress.com/lyme-links/doctors-with-lyme/

For anyone interested Dr Neil Spector (plus Ireland’s Dr Jack Lambert) will be presenting at the upcoming Vis a Vis Symposium in London this October (2016).

The conference is for doctors, scientists, vets & students so if you know of anyone who may be interested please pass the news along. I understand the entrance will be free of charge (sorry, no patients tho!)

Vis Symposium

Lyme sufferer Ann Maher has been organising patient meetups in Ireland for a number of years now. This year the meetup developed into Ireland’s 2nd conference on Lyme disease. ‘Patients Helping Patients’ was the title & was supported by Tick Talk Ireland. Organiser Ann says:

Ann conf 2016

The conference was a huge success, with 120 attendees there, which included some G.P’s from around the Country, Dental surgeon, Cardiac consultant, 2 Pharmacists and a County Councillor from Kerry, which is a high risk area for Lyme disease.

Many “New Patients” attended, which makes me so sad that after all these years, nothing much has changed as regards early diagnosis and treatment, we had Patients from all over Ireland North and South.

The very sad situation of Misdiagnosis is a serious Problem, which we wish, with Education for the Medical profession and the Public that might change over the coming years. Of course, it seems our testing needs to improve, but that is a worldwide problem as well.

I really appreciated that Dr Armin Schwarzbach invited those European speakers on our Behalf;-

Conf agenda

Dr Herbert Rixecker( Dental Surgeon),
Dr Albin Obiltschnig( Orthopedic hand Surgeon), who had Lyme disease himself.
Pol De Saadeleer ( PharmaD)
Dr Armin Schwarzbach did a wonderful presentation on the day.!

I was especially delighted that Dr Jack Lambert from the Mater Private hospital, Dublin, accepted my invitation to do a Presentation on the day, which he also presents to groups of G.P’s around Ireland, on behalf of the Mater Private hospital.

Dr Lambert also presented data in a poster session on the first 100 patients from the Irish perspective, in June 2016 ILADS conference in Helsinki & will also be appearing at the upcoming Vis-a-Vis conference in London this October.

All in all the conference was a success. It’s very hard for patients to organise these big events but we do it to help raise awareness, bring patients and doctors together and to hope for a better future!

Some upcoming confs in the UK are listed here at: http://lymediseaseuk.com/2016/03/20/upcoming-events-3/

Check out this excellent video below, courtesy of Nicci St.George Smith this 18 mins video inc snippets of presentations plus interviews with speakers & patients


Survey results:

For several years now we have had a rolling survey which we publish every 18 months to 2 years. In May 2016 we released our latest results. Here are some snippets of the surveys..

Snippets from the Lyme survey – full report available via PDF

127 people replied to the survey during the months of July 2009 to end April 2016:-

When asked which country the tick-borne infection took place, 64% of our respondents were infected in Ireland and 18.5% in North America. The remaining 17.5% listed Europe as their source of infection.

An overwhelming 41% of respondents said they were infected whilst out walking (in woods, along a beach, by a lake or in a park). 10% indicated they were infected in their own gardens & 6% whilst camping.

52% patients waited a year or more before receiving a diagnosis

86 out of our 127 respondents have been ill for more than a year in TOTAL including pre & post treatment which is an alarming 68%.

Nearly a THIRD of these patients (25 out of 86) have been ill for 10 years or longer.

Regarding misdiagnosis, 38 people indicated they were previously diagnosed with ME (chronic fatigue syndrome), 21 people were told they had psychiatric disorders, 15 had FMS (fibromyalgia), 10 MS (multiple sclerosis) & 1 person was misdiagnosed with Parkinson’s disease.

Symptoms among our respondents were wide ranging, particularly in those that have been ill for a long time. The highest response rate of symptoms included profound fatigue (81%), weakness (79%), muscle aches (78%), poor concentration (74%), migratory joint pain (70%), stiff neck (70%),
tingling/numbness (68%), sleep disorder (67%), poor memory (66%), headaches (66%), dizziness (64%), stiffness (63%) & brain fog (62%).

It is interesting to note that the erythema migrans (EM) rash was only present in 43% of the patients at the start of the illness and 22% have multiple EM’s during the course of the illness. This shows that a rash is not always present or even noticed.

A shocking 55% of our respondents suffer 20 symptoms or more as part of their illness.

20 respondents have consulted a Lyme specialist in the UK, 17 went to the USA, 14 went to Germany, 2 to Switzerland, 3 in other parts of Europe (France, Portugal & Hungary). 17 saw a private consultant in Ireland.

For treatment protocols 69% have used tetracyclines (e.g doxycycline), 34% penicillin (e.g. amoxicillin), 26% macrolides (e.g. zithromax), 26% IV antibiotics, 22% metronidazole (e.g. flagyl) and 18% cephalosporin (e.g. zinnat).

For alternative therapies 29% of respondents have tried acupuncture, 28% Co-enzyme Q10, 28% massage, 23% have taken Cat’s Claw/Samento, 21% homeopathy, 14% Alpha Lipoic and 14% glutathione. To help with symptoms, 48% use probiotics, 45% painkillers & just under a quarter of the patients reported they take anti-depressants.

109 people responded to the last question – as to which type of treatment had been the most helpful. 74% answered antibiotics, 32% rated alternative therapy, 31% of people found supplements to be helpful, 26% found painkillers helped them whilst 29% mentioned ‘other’ methods helped (including massage, yoga, infra-red saunas & physiotherapy).


Snippets from the Tick survey
– full report available via PDF

The most common area for ticks was an overwhelming 21% in Galway, 15% in Kerry, 12% in Cork, plus 7% in Donegal & Clare.

44% of ticks were found in tall grasses, 21% in private gardens.

46% of ticks were found whilst walking, 13% whilst gardening.

54% of ticks were found on adults, 30% on dogs, 20% on children, 7% on cats, 4% on deer

Was the tick attached when found?

87% of people reported that the ticks were attached to the skin when found (ie embedded).

13% reported that the tick was found crawling over the skin (but NOT embedded).

51% of our respondents who had an embedded tick noticed that the tick was engorged when found, which indicates the tick has been feeding for some time. This greatly increases the chance of transmission of Lyme Disease if the tick was in fact infected with Lyme (borrelia) bacteria.



Lyme disease: Nobel Prize Winner Prof. Montagnier denounces the inefficiency of test protocols

June 19, 2016, 4:51 p.m.|

The Lyme disease , transmitted by tick bites, is poorly diagnosed and treated in France, due to a “great ignorance about its chronic nature,” said Sunday, at a conference in Strasbourg, the Nobel Prize medicine Luc Montagnier, who claims to have made promising discoveries to better diagnose the condition.

“It is unfortunate that governments and health authorities have not a coherent policy on Lyme disease,” denounced the co-discoverer of the AIDS virus.

“There are currently a total ignorance on the subject of much of the medical and scientific community, “added Professor Montagnier, who was speaking during a study day devoted to this pathology, organized by” Lyme without borders “, an association of angry patients against the formal approach to the disease.

For Professor Montagnier, 83, the tests used today to detect the Lyme bacteria give too many “false negatives” because they are based on the detection of antibodies, while some patients infected do not develop – or they have been infected there too long for this test method to be effective.

The scientist, who worked in Paris in a research institute that bears his name, seeks to to develop a diagnostic method of detecting in the blood plasma of traces of the DNA of the bacteria, by sensing the electromagnetic waves emitted by the sample. “I think this test is more reliable” than those currently in force, said the Nobel Prize, while agreeing that this electromagnetic approach was “not recognized by a number of scientists, so had the hard to get it validated. ”

27,000 new cases of Lyme disease are officially reported each year in France, but according to the association” Lyme without borders “, this figure is in fact much more important, in the order of” ten times more “.

Detected too late, the disease – for which there is no vaccine – can have severe and debilitating neurological consequences for patients.

According to the members, many patients, sometimes nailed in a wheelchair, have “wandered” from doctor to doctor and sometimes treated hypochondriacs lack of proper diagnosis.

“Yet even 10 years after the condition (a tick bite, ed), it may be that the bacterium is there, hidden in the body,“said Professor Montagnier.

In such cases, it is very important to ask the right diagnostic to offer treatment with antibiotics, which “can be effective,” he said.

For a look at the similarities between Aids & the Lyme movement check out our recent blog post (see about half way down the post for details ‘Is Lyme the new Aids?’).


Nice guidelines

– in the UK there have been moves to create useful guidelines for GP’s to follow regarding treatment and diagnoses of Lyme disease. As we know from the Infectious Disease Society Guidelines of America, setting guidelines can be fraught with dangers. Do you accept that Lyme is a chronic, persisting illness which as yet has no known cure or do you believe that Lyme is shortlived, easy to treat and therefore suggest a treatment in the box approach. Research does show that Lyme bacteria is very difficult to treat, it can evade antibiotics as well as the immune system, it is shape shifting and can be protected by biofilm. More recently it has been suggested that borrelia can even hide inside nematode worms causing lewy body dementia. Can this be a cause of some types of alzheimers?

During a meeting with Prof Whitty (investigator who will lead a government review into Lyme disease) there was a suggestion that scientists who have strong opinions on either side of the argument (short lived v chronic Lyme believers) will be disregarded from review. However, where does that leave scientists such as Eva Sapi & Dr Alan McDonald, both with first hand knowledge of Lyme disease? They have studied Lyme bacteria in great deal and understand the bug more than many – is it fair to disregard their expertise because of their involvement in the Lyme community? I’m sure patients are waiting with some trepidation to the outcome, a review is needed but not at the expense of ignoring a whole section of research.

Here is a link to Caudwell Lyme Charity’s meeting with Prof Whitty, plus Lyme Group UK’s response to a petition that was submitted to the government.

Meanwhile, many Lyme groups are taking part in the NICE guideline review, inc Lyme UK, Viras & Lyme Disease Action. Tick Talk has offered it’s article on testing concerns (PDF) which has been accepted by the NICE guidelines committee.


Irish documentary team looking for backers, take a moment to watch the video, it’s heart wrenching..


Lyme prevention!

Meanwhile, don’t forget to protect your family this summer. Check out our latest article published in ‘My Kids Time’ web site 🙂

Why It’s Important to Protect Your Family from Ticks


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..

NB: now only available via scribd from Sep 2018 at: 

luna front cover

luna back cover

Take care this Spring & Summer 🙂

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

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.


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/

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!

Good news!

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

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

NB: Pls note that since Sep 2018 Luna has also been loaded onto scribd for free download

luna front cover

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

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

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

The HPSC (health protection & surveillance centre) have recently published information on the EPI Insights web page at:

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

Portumna larval 2

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

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

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

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


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

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

Jie Feng, Paul G. Auwaerter, Ying Zhang

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

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

Shot of lime 2

For information on transmission head on down to:

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

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

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

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

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

15 ticks Portumna Sep 18 2011_1

Ticks collected in Portumna Forest, Co Galway Sep 2011

Big Lyme Debate!

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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