Posts Tagged ‘Under Our Skin’

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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Hidden in Plain Sight

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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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radio logoLyme is discussed in investigational radio show called Flashpoints at KPFA FM. Below is a little about the radio show & the clips available for listening so far..


Flashpoints is an award-winning daily investigative newsmagazine broadcast on the national Pacifica Radio network. Through original reports and some of the key investigative reporters of our time, Flashpoints goes to the frontlines and to the core of the stories in the areas of government and corporate criminality, human rights, and economic justice.

Can you help?

KPFA are asking for much needed support to help them continue their investigative show on Lyme Disease. https://secure.kpfa.org/support/

Radio clips

Posted on January 15, 2014 by Flashpoints

Today on Flashpoints: An expanded investigation into Lyme disease and how the medical profession has dropped the ball in dealing with this new emerging epidemic.. Dr Jessica Bernstein psychologist talks about her own diagnosis..

Flashpoints 01-15-14

Posted on January 22, 2014 by Flashpoints

Today on Flashpoints: Internationally noted novelist Amy Tan speaks out about her battle against Lyme disease. Also, we have Dr Harris who is an expert in Lyme disease in the San Francisco Bay Area.

Flashpoints 01-22-14

Posted on January 28, 2014 by Flashpoints

Today on Flashpoints: We continue our multi-part series on Lyme disease, and we’ll explore how Lyme can cause neurological symptoms that look like MS and Alzheimer’s. Interview with Tom Grier microbiologist & Dr Alan MacDonald pathologist..

Flashpoints 01-28-14

Posted on February 05, 2014 by Flashpoints

Today on Flashpoints: Can Lyme disease be passed by sexual intercourse? We continue our ongoing series on the growing Lyme epidemic. We’ll be joined by an MD and a researcher who were part of a major study. We’ll also speak with the filmmaker of Under Our Skin, a real life thriller about the nature of and battle against Lyme disease. Interview with Dr Stricker about sexual transmission & Andy Abrahams Wilson, director/producer of Under Our Skin.

Flashpoints 02-04-14

Posted on February 07, 2014 by Flashpoints

Today on Flashpoints: We continue our ongoing series, on the growing epidemic of Lyme disease. We’ll be in deep conversation with Dr. Richard Horowitz, one of the leading doctors in the fight to call attention to the growing Lyme disease epidemic. He’s also the author of “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease”. And we’ll feature more excerpts from the hard hitting documentary film “Under Our Skin”.

Flashpoints 02-06-14

Lymelight Radio

Katina Makris, author of the Lyme recovery award winning book ‘Out of the Woods’ runs a very good radio show called Lyme Light Radio.

To review the speakers & archives please hop to: http://www.thedrpatshow.com/searchshowsAll.php?search=lyme&x=0&y=0

Past guests include Dana Walsh from Under Our Skin, Dr Horowitz, Dr Jernigan, Dr Kenneth Liegner & many, many more. Check it out!

Hot news, soon to come, an interview with Katina on Lyme in UK & Ireland, more to follow soon 🙂

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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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Tick Talk Ireland Logo by Pauline Reid
The organisation IOSH (health & safety) have asked Tick Talk Ireland to speak at their conference on 6th March 2013.

Event name: Cultivating A Safer Future
Location: Dundrum House Hotel, Dundrum, Cashel, Co. Tipperary.
Date/Time: 06/03/2013 09:15:00
End Date/Time: 06/03/2013 15:30:00


The purpose of the event is to promote the Rural Industries Section, to increase awareness of specific hazards and their control within rural industries with a particular focus on agriculture.

The speakers Pat Griffin HSA Inspector, Michael Doyle (ESB Training Centre) presenting on ATV’s and Off Road Vehicles, Peter Gohery presenting on his personal experience of a farm accident, Jenny O’Dea (Tick Talk Ireland) presenting on her personal experience of Lyme Disease, Dr. Eoin Healy (UCC) presenting on Lyme Disease: Identifying the Hazard for Prevention and Ciaran Roche (FBD) Insurance and you: practical considerations for land owners.

For bookings go to: http://www.iosh.co.uk/branches/ireland/branch_events/cultivating_a_safer_future.aspx

Check out the MEM0992 Cultivating a safer future in rural Ireland.pdf for more details (pdf)

On 22nd January 2013 Tick Talk directors met up with Dr Paul McKeown from the HPSC.

As indicated in our news update Winter 2012 we are very concerned about the over reliance of restrictive testing & restrictive guidelines with respect to Lyme disease patients. In Autumn last year the Infectious Disease Society of Ireland (IDSI) & the Health Protection Surveillance Centre (HPSC) et al prepared a consensus statement citing unison with the Infectious Disease Society of America (IDSA) in the diagnosis & treatment of Lyme Disease. Whilst there has been criticism of the alternative set of guidelines produced by the International Lyme & Associated Diseases Society (ILADS) we feel that patients often fall outside the remit of the IDSA guide in that they stipulate short term treatment only.

Additionally the two tier system of testing used as ‘gold standard’ (Elisa followed by Western Blot) can miss some patients due to problems with antigenic strain variation, lack of immune response & effects of antibiotics on testing. This is stipulated by the test kit manufacturer themselves. During Spring 2012 Tick Talk distributed their concerns (see links below) to various health organisations including Department of Health, Ireland, Health Protection & Surveillance Centre, Ireland, European Centre for Disease Control & the Prime Minister of the UK. Some of these concerns were discussed with Dr Paul McKeown & Dr Patricia Garvey of the HPSC.

Please note that the attachements below are in PDF format, hit the back button to return back to our page when done!

Click here for a review of our minutes with the HPSC
Click here for a copy of our letter concern submitted last Spring
Click here for the accompanying attachment on Coinfections UK & Ireland
Click here for a shorter version of our concerns sent to the IDSI et al
Check out our blog post called Mythbusting!

We are also concerned about the lack of knowledge here in Ireland. Some patients are reporting that lyme rashes are being mistaken as spider bites or told it could not be Lyme as it doesn’t exist in this country. This is alarming as ticks have been known to carry the lyme causing bacteria (borrelia) in Ireland for decades & has been present in Europe since the ice age. We have been reassured by the HPSC that more awareness will be made with regards to the public (& medical system) by way of press releases & a specific focus on tick awareness during April each year. If the public are made aware of the dangers of ticks they can seek ways to enhance protection & prevention.

Tick Talk needs your help.

During April/May tick awareness is very important as ticks are most active in the Spring. Can you help us spread the word? We need folks willing to hand out leaflets, maybe in your local library, health club, school or workplace. Perhaps you can sell some lyme awareness ribbons to aid awareness & help raise funds for Tick Talk? Remind folks that removal of ticks quickly & correctly are vital to help minimise the risk of Lyme Disease.

Check out our merchandise page for stocks of tick twisters, repellants, awareness ribbons & bugs, bracelets & key rings. Seek out a copy of Under Our Skin (US lyme documentary) or purchase our newly released DVD of Ireland’s first Lyme Conference covering testing, research & treatment.

Lots to keep us busy for the Spring!

Also in the pipeline is a new book called The Adventures of Luna & Dips,a children’s book to help enquiring minds learn about the tick’s life cycle, how they feed & where they live. More updates will be added to the page as soon as available.

Meanwhile I hope you have a safe February. Keep a look-out for some new updates to our links section soon!

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News Updates!

During summer Tick Talk Ireland sent a letter of concern to the Minister of Health (Ireland), the HPSC (Irish equiv HPA), Director of the EU CDC & a copy was submitted with the petition & rally outside 10 Downing Street in May. No response has been received from any of those parties. Meanwhile in September we emailed several health organisations with studies regarding the problems with testing. It was noted November 2012 that some of the entities contacted created a consensus statement citing unison with the IDSA guidelines. In response we created this letter:

Dear sirs, on the 18th September 2012 a full & lengthy report was submitted to the entities above with regards to the many problems associated with Lyme Disease testing. This was accompanied with numerous studies supporting the points put forward. It has been noted however that a consensus statement has since been drawn up & published online by the following entities:

Scientific Advisory Committee of the Health Protection Surveillance Centre,
Infectious Diseases Society of Ireland, the Irish Society of Clinical Microbiologists,
Irish Institute of Clinical Neuroscience and the Irish College of General Practitioners

As a concern for patients we believe the following affidavits should be included:

1. Guidelines are designed for voluntary use only & should not be used to replace the knowledge of the treating physician:

Per IDSA: http://www.idsociety.org/Guidelines_Patient_Care/

Quote: “It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgement with respect to particular patients or special clinical situation. IDSA considers adherence to the guidelines listed below to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

Per European CDC: http://ecdc.europa.eu/en/healthtopics/tick_borne_diseases/lyme_disease/basic_facts/Pages/factsheet_health_professionals.aspx

Quote: “The information contained in this factsheet is intended for the purpose of general information and should not be used as a substitute for the individual expertise and judgement of healthcare professionals.”

2. Testing can be problematic causing false positives & false negatives for several reasons:

Per Trinity Biotech: https://ticktalkireland.files.wordpress.com/2013/02/elisa-trinity-vise.pdf

The test kit states “The diagnosis of Lyme disease must be made based on history, signs (such as erythema migrans), symptoms, and other laboratory data, in addition to the presence of antibodies to B. burgdorferi. *Negative results (either first- or second step) should not be used to exclude Lyme disease.*”

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

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

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

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

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

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

More information on the downfall of testing is available in the following document

3. Lyme testing criteria set by the CDC is for ‘surveillance’ criteria & should not be used to exclude diagnosis.

Per CDC: http://wwwn.cdc.gov/NNDSS/beta/bcasedef.aspx?CondYrID=752&DatePub=1/1/2011%2012:00:00%20AM

Quote: “This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.”

Per European CDC: http://ecdc.europa.eu/en/healthtopics/tick_borne_diseases/lyme_disease/basic_facts/Pages/factsheet_health_professionals.aspx

Quote: “Further improvements in diagnostic tests are also required.”

As a team we have access to many scientific papers as well as lab test kit information from various manufacturers & feel very concerned that information with regards to the problems with testing is not being relayed sufficiently to doctors. We are aware that consultants are still telling patients that Lyme doesn’t exist here in Ireland therefore rashes are being missed or blamed on a spider bite. Too much reliance is also placed on testing (a negative leads to patients being refused treatment). We know that early diagnosis is key to successful treatment; those treated later their prognosis for a full recovery is not so good.

Per Trinity Biotech: Late, delayed, or inadequate treatment can lead to the more serious symptoms, which can be disabling and difficult to treat.

Until testing can significantly be improved we feel that more must be done to ensure swift & effective clinical diagnosis. We also feel adherence to restrictive guidelines & testing does little to help patients, & welcome the day when improvements can be made. In the interim if our concerns can be met regarding the points mentioned above we would be grateful.

We will continue to post updates as we soon as we know more….

Christmas Gifts at Tick Talk Ireland

Find a cure bangles, lyme survivor bracelets, make a difference key rings & copies of Under Our Skin with free car sticker are available. Head on down to: http://www.ticktalkireland.org/merchandise.html for more including tick twisters & repellants to protect your family.

Conference DVD

June 5/6 2012 bought the very first conference on Lyme Disease to Ireland, attracting highly respected professionals from around the world. A conference 3 disk DVD set will soon be ready for release & updates will be posted on our main website & facebook pages once it’s available. For more information on the conference plus reviews head on down to: http://www.ticktalkireland.org/conferencereview2012.html

Tick Talk Surveys

If anyone comes across ticks in Ireland we have some surveys to report on where they were found. This is a rolling survey (results updated each year) so we can analyse any changes over time. We also have surveys for Lyme sufferers who have been infected in Ireland (or infected abroad but treated & tested here in Ireland.) More details are available at: http://www.ticktalkireland.org/surveys.html.

To review results of previous surveys check out our blog site at:

New Book to Warn Children about Lyme Disease

Tick Talk Ireland have written a new children’s book to help warn children, teachers & parents about the dangers of ticks, the carriers of Lyme Disease. Did you know that Lyme is alive & kicking in Ireland? Would you know how to prevent infection?

An educational story & picture book following the adventures of Luna & Dips (tick). Follow Luna from her birth as a young larva as she navigates her way through the trials & tribulations of growing up. She learns many things from her adult friend Dips but often has to go & undertake her quest alone. She yearns to be grown up & look just like Fantaz, a nymphal tick, who gives her more advice. Will Luna grow up to be the tick she desires?

We’d love to make the book available free to schools, accompanied with a factsheet with tips on protection & prevention. For more details & a video clip of our current project head on down at: http://www.fundit.ie/project/the-adventures-of-luna–dips

We’re also looking for helping with funding – pledges can be made on the site link above in return for rewards including free t-shirts, certificate, copy of the book, tick pullers & maybe even a free night’s stay at Clontarf Castle for 2!

Craft Fair & Tick Talk Fundraiser

For anyone with family or friends in the Galway area (a hotspot area for Lyme disease) why not come down & see us at the Christmas Craft Fair 8/9 Dec at the Oranmore Community Centre from 10am-6pm?.. There’ll be loads of crafts stalls, lots of home baking, a remembrance tree, Tick Talk awareness table & children’s entertainer all available on the day.

And don’t forget to bring your letters for Santa!

With all the best & keep safe!

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Tick Talk Ireland is rounding up our first year end as a charity & wow what a year.

So what have we done so far?

*Set up a new website with Tick Talk URL
*Designed & printed leaflets & distributed to national parks, hospitals, vets, libraries, health centres & chemists
*Printed business cards & Tick Talk postcards for leaving in banks, handing to doctors, mailing with twisters etc.
*Purchased tick twisters for resale
*Purchased merchandise including find a cure bangles, where there is love & Lyme survivor bracelets, computer bugs & awareness ribbons.
Merchandise will help to create awareness & subsequently generate more funds to help us raise more awareness!
*Held our first fundraising & awareness event complete with Lyme presentation, sponsored walk, music night & raffle
*Tick Talk member persuades Killarney county council to place warning signs by a children’s play area
*Wrote articles for children’s websites, appeared on RTE television & some Tick Talk members helped with newspaper & radio interviews
*Sent ILADS psychiatric Lyme brochure to psychiatric clinics across Ireland
*Designed & posted symptoms chart to help patients track their symptoms
*Continued to write Luna tick stories (If Ticks Could Talk!)
*Published an FAQ & what to do if you suspect Lyme
*Questions & answers session with the Deer Alliance & collection of ticks brought in for analysis (these were sent off to Germany for PCR testing)
*Completed a tick sweep in Portumna Forest, Galway & mailed to Germany for testing
*Fundraising event via a Dart Tournament in Wicklow
*Tick Talk & its members encouraged Lyme to be made notifiable to help track possible, probable & proven cases (Lyme has been added to the notifiable illnesses list as of September 2011)
*Wrote to the European Parliament to encourage better testing & monitoring of Lyme disease cases throughout the EU
*Followed up with all county councils to ensure they included links to the HPSC Lyme leaflets on their site, as promised by the HSE (the majority have now complied)
*Surveys Two new surveys created on ticks in Ireland plus vet’s study
*Release of a UK & Ireland patient survey, in collaboration with Lyme Research UK & Ireland (see note below)

NB: As a reminder the survey through Lyme Research UK & Ireland is due to close soon. For more information go to: https://ticktalkireland.wordpress.com/2011/10/17/surveys-sweeps/

Plans for next year include:

*Our very first Lyme conference attracting speakers from US & Europe (more details to follow)
*More tick sweeps & tick testing in various locations in Ireland – volunteers needed!
*Much wider distribution of leaflets across Ireland – more volunteers needed!
*Analysis & publication of survey results
*Meeting with the HPSC regarding survey results & discuss warning notices to the general public
*Design, print & distribute awareness posters for health clinics & schools
*Continue to update our website, blog, twitter & facebook page with new & exciting research studies
*Lyme awareness presentations in local areas
*Encourage doctors to consider the ILADS physician training program (Tick Talk may be able to contribute towards flights – a stipend is payable during the program)
*Plan new fundraising & awareness events, to be announced in the New year
*Finish & publish Luna the Tick (If Ticks Could Talk!)

Ways you can help!

*If you have some spare time & can help us distribute leaflets let us know at info AT ticktalkireland.org
*Interested in doing a fundraising event in your area? Let us know & we can send material to help you such as posters, leaflets, presentation disk etc. We also have available a version of Under Our Skin with public viewing rights – if your local sports, walker’s club etc. would be interested let us know!
*Do you have sporty & daring relatives? Maybe they’d like to help out with sky diving or marathon running. A great way to raise awareness & funds at the same time!
*Check out our merchandise page, all profits from sales go directly to Tick Talk
*Alternatively donate to us at: https://ticktalkireland.wordpress.com/donate/
*If you’re a doctor & would like to be regularly informed of new research on Lyme feel free to contact us.

Stop Press!

Lyme disease has now been made a notifiable illness!

We have recently received confirmation from the Department of Health that as from September 2011, Lyme disease has been made a notifiable illness here in Ireland. We had been campaigning for a number of years to achieve this status as recognition of the seriousness of the disease. My thanks to everyone in the health service who have helped to encourage this move forward.

We feel that tracking of case numbers may be enhanced, as clinical diagnosis could also be considered as well as serologically confirmed cases. ** see update below

It is important to note that not all cases are picked up serologically,. For instance the test kit manufacturers Trinity Biotech say that early Lyme cases & some late manifestations of Lyme may continue to be negative. In their own words, ‘Lyme testing both 1st & 2nd tier should not be used to RULE OUT a diagnosis’. This is especially important where early antimicrobial intervention has been given as this may affect the antibody response. This is why clinically diagnosed cases can show a much sounder reflection of cases..

** It appears that only lab confirnmed neuroborreliosis cases are being monitored, this is disappointing as early lyme sufferers may not exhibit postive results & lab tests can be affected by antibiotics therefore relying on lab confirmed cases only will miss a number of patients. Using suspected & probable cases may have gone a long way to tracking clusters of cases across Ireland & could have been based on EM rashes & other symptoms following a tick bite. Sadly these patients may not hit the radar giving an underestimated figure across Ireland.

On a different note, a new book has been released by founding member of the IDSA (Infectious Disease Society of America) Dr Burton Waisbren entitled:

Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays

This book is available through amazon in paperback edition or kindle.

For sample chapters please refer to: http://books.google.co.uk/books?hl=en&lr=lang_en&id=GYzwLmRNatUC&oi=fnd&pg=PR15&dq=lyme&ots=6pG66rTkCX&sig=VPSZdONEeGCBgEL5QB5EQyAR8TU#v=onepage&q&f=false

Dr. Waisbren is board certified by the American Board of Internal Medicine and also is a fellow of the American College of Physicians and the Infectious Disease Society of America. He is a founding member of the Infectious Disease Society of America, the American Burn Association, and the Critical Care Society of America.

For more information on his background please go to:

Lastly I’d like to give advance noticed of an upcoming Lyme conference being planned for next year. Speakers will be coming in from USA & Europe & should be a good chance to discuss problems faced by patients & their doctors when it comes to recognising & treating the myriad of Lyme symptoms.

More news to follow in the New Year.

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