Posts Tagged ‘Lyme Stats Ireland’

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..
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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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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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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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Hidden in Plain Sight

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

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

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

Some Interesting facts about borrelia…

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

The fastest speed recorded for a spirochete is upward of two orders of magnitude above the speed of a human neutrophil, the fastest cell in the body. This alacrity and its interpretation, in an organism with bidirectional motor capacity, may well contribute to difficulties in spirochete clearance by the host.

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

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

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

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

About the spirochete:

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

Granules or blebs:

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


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

Cyst Forms:

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


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

Biofilm protocols have five main goals:

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

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

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

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

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

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


Testing, Testing..

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

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

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

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

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

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

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

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

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

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

question mark

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

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

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

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

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

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

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

Patient Power –

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

lyme protest 1

Here’s some ways we have made a difference…

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

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

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

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

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

Per the HSE website:

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

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

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

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

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

Useful resources:

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

Open Learning Centre!

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

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We were very pleased to see more Lyme Awareness across Ireland last week as part of the Tick Awareness Week set by the Health Protection & Surveillance Centre & HSE (May 19-23 2014).

As part of the week leaflets & posters have been updated on the HPSC site, these are information pamphlets produced by the European CDC to help children & travellers learn about the risks of Lyme Disease.

We have also been busy updating our rolling surveys on ticks spotted across Ireland & feedback from patients on their experiences of testing, treatment & sadly the many symptoms associated with the more chronic form of the disease. Survey results can be downloaded in PDF/text format as well as xls chart format. More details below.. – For PDF hit the back button to return to page 🙂

Tick Survey

(PDF Text) Tick Talking Results May 2014

(XLS Chart) SurveySummary_Tick Talking May 2014

To enter newly spotted ticks go to: https://www.surveymonkey.com/s/B3XTJL2

Lyme in Ireland Survey

(PDF Text) Results – Lyme Survey May 2014

(XLS Chart) SurveySummary_Lyme Survey May 2014

Patients who haven’t entered the survey before can add their details using the following link (must be infected in Ireland or infected abroad but living in Ireland).


To maintain your privacy we do not collect any personal information such as name, address or IP address.

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luna front coverluna back cover

New Book out written by Jenny O’Dea

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

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

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

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

Tick Awareness Week

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

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

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

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

Surveys now updated!

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

Tick Talking While You’re Walking – Tick Survey Ireland


Since May 30 2011 we’ve been asking members of the republic to report on any ticks spotted here in Ireland. As of Jan 31, 2013 a total of 82 people have responded so far.

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

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

Lyme Survey

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


To qualify, the respondent must be a Lyme sufferer who is:

* Living in Ireland – infected by Lyme here or abroad or
* Not living in Ireland – but infected within Irish Counties

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

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


Big Sale in our Store!

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

NB: The sale prices are reflected when you place items in shopping cart!

Lyme Protests Around the World – sufferers speak out

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

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

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

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

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

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