Forward Thinking!

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

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

Recent Advances:

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

More details at:
http://www.prnewswire.com/news-releases/stand4lyme-partners-with-stanford-scientists-making-lyme-history-300257251.html

or check out this 20 minute video for more information

Researchers investigate four promising new treatments for Lyme disease

March 29, 2016 by Thea Singer

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

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

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

More on the article available at:
http://www.northeastern.edu/news/2016/03/researchers-investigate-four-promising-new-treatments-for-lyme-disease/

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

By Chris Miller Wednesday, August 26th 2015

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

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

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

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

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

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

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

UK scientist speaks out about chronic Lyme disease & problems with testing
http://www.dailymail.co.uk/health/article-3563844/Lyme-disease-ticking-time-bomb-Leading-expert-explains-life-wrecking-illness-spreading-protect-yourself.htm

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

Loads of info on chronic lyme available here

Scientists Thinking outside the box:

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

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

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

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

New charities in the UK:

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

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

Newsletters:

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

Development of UK guidelines:

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

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

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

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

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

Advances in testing:

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

It’s All in Your Head:

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

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

Surveys:

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

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

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

For articles related to Ireland check out the following sections:

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

Lyme Prevention Book

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

NB: now only available via scribd from Sep 2018 at: 
https://www.scribd.com/doc/138970319/Adventures-of-Luna-Dips

Take care this Spring & Summer 🙂

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Updates for Winter 2015

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Luna Tick is looking for readers!

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

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

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

Is Lyme the new Aids?

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

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

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

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

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

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

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

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

Surveys

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

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

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

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

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

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

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

 Paul Duray Research Trust:

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

 Dr Alan MacDonald:

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

 Dr Eva Sapi:

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

 Tom Grier:

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

 Dr John Drulle:

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

 Dr Daniel Cameron:

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

 Dr Brian Fallon:

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

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

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

Have a Safe Winter Everyone xxx

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Lyme Awareness Apr 2015

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

New Article – Health & Safety in the Countryside

https://ticktalkireland.files.wordpress.com/2015/04/health-safety1.pdf

New Article – Issues Surrounding Antibody Testing

https://ticktalkireland.files.wordpress.com/2015/04/issues-surrounding-testing.pdf

New Article – Does Lyme Exist in Ireland?

https://ticktalkireland.files.wordpress.com/2012/04/does-lyme-exist-in-ireland.pdf

New Kindle Book – Adventures of Luna & Dips

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

http://www.amazon.co.uk/Adventures-Luna-Dips-Jenny-ODea-ebook/dp/B00VS46RIQ

Updated Article – Newcomer’s Guide for 2015

https://ticktalkireland.wordpress.com/newcomers-guide/

Updated Links in April

Irish News: https://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/

Irish Studies: https://ticktalkireland.wordpress.com/irish-related-studies/

Celebrities: https://ticktalkireland.wordpress.com/facebook-contents-page/celebrities/

IDSA Review: https://ticktalkireland.wordpress.com/facebook-contents-page/idsa/

Blood Testing: https://ticktalkireland.wordpress.com/lyme-links/testing/

Tick Testing: https://ticktalkireland.wordpress.com/facebook-contents-page/tick-testing/

Paediatric Lyme: https://ticktalkireland.wordpress.com/lyme-links/paediatric-lyme/

Prophylaxis: https://ticktalkireland.wordpress.com/facebook-contents-page/prophylaxis/

Prevention: https://ticktalkireland.wordpress.com/facebook-contents-page/prevention/

Updated Links in March

Symptoms Guides: https://ticktalkireland.wordpress.com/facebook-contents-page/symptoms-guides/

Transmission: https://ticktalkireland.wordpress.com/facebook-contents-page/transmission/

Lots more info in our links section or in menu down right hand side. Our main site contains more basic info for those new to Lyme disease – includes section on prevention, tick removal, symptoms & testing. If anyone sees a tick this year don’t forget to help us by completing our surveys (Tick Talking While You’re Walking) at: http://www.ticktalkireland.org/surveys.html

Have a Safe & Happy Spring & Summer. Keep Safe!

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Spring Updates 2015

Good news!

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

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

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

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

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

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

The HPSC (health protection & surveillance centre) have recently published information on the EPI Insights web page at:
http://ndsc.newsweaver.ie/epiinsight/1d8k33gt9m010gkzp9yxn5?a=1&p=48604010&t=17517774

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

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

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

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

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

https://www.zeemaps.com/map?group=1392964&hc_location=ufi

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

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

Jie Feng, Paul G. Auwaerter, Ying Zhang
http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0117207

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

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

For information on transmission head on down to:
https://ticktalkireland.wordpress.com/facebook-contents-page/transmission/

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

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

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

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

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

Ticks collected in Portumna Forest, Co Galway Sep 2011

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Open letter to herbalists

Updated 8th Sept 2015: have updated our conference section with some more events that may be of interest to alternative practitioners..

Belgium – a look at testing, traditional med & alternative therapies, Antwerp, Sep 12th & 13th: http://lyme-conference.bbow-apso.be/

Lyme Disease Action – focus on persistence, Uni Cambridge, Sep 12th: http://www.lymediseaseaction.org.uk/what-we-are-doing/conferences/

Cowden/Nutramedix Workshop, Copenhagen, Oct 4th Denmark (discounts on up to 5 protocols avail – free admission, reservations needed to secure place): http://www.nutramedix.com/downloads/Flyers/CopenhagenWorkshopInfoFlyer.pdf

Gresham Centre – lab specialists, Lyme docs & patients awareness day & book launch, London, Oct 10th: https://www.eventbrite.com/e/suffering-the-silence-living-experiences-of-lyme-disease-chronic-illness-tickets-17659779877

Assoc Nutritional Medicine – focus on chronic conditions, Nov 15th, London: https://www.eventbrite.co.uk/e/lifting-the-veil-part-ii-chronic-disease-whats-really-going-on-tickets-17390619812

Beyond Lyme and Other Chronic Illnesses: Reclaiming our Health and Well-Being with Dr Horowitz author of Why Can’t I Get Better, Massachusetts, Dec 4-6th USA: http://kripalu.org/program/view/BLOI-151/beyond_lyme_and_other_chronic_illnesses_reclaiming

Updated 15th July 2015: please note that a new conference has been added in our conf section (down right hand side) – Judy Rocher from Rio Trading will be presenting on Natural Therapies  Lyme Disease and its Associated Infections – covering Cowden/Buhner/Klinghardt & more… (London UK August 2nd 2015)

http://www.eventbrite.co.uk/e/natural-therapies-with-judy-rocher-lyme-disease-and-its-associated-infections-tickets-17650961501?aff=erellivorg

Also on same day is a workshop on testing for Lyme & co. by lab expert Dr Armin Schwarbach: http://www.eventbrite.co.uk/e/laboratory-testing-lyme-associated-infections-training-workshop-with-dr-armin-schwarzbach-tickets-17439741737?aff=erellivorg (aimed at health professionals).

Updated 21st May 2015: please note that a new conference has been added in our conf section (down right hand side) – Cowden/Nutramedix will be presenting a workshop in Dublin June 3rd 2015 on Lyme disease herbal tinctures, all entry is free & particpants can claim reduced price protocols.

Open to patients & practitioners alike. http://www.nutramedix.com/downloads/Flyers/Dublin%202015%20Flyer.pdf

Updated 9th March 2015: have added a new alternative therapy conferences in our conf section (down right side). For quick link to conference at Univ Klagenfurt in Austria (April 25th) go to..

Invitation Klagenfurt Conference April 2015(2)

Feb 2015: Have sent this to some herbalists & naturopathic colleges in Ireland, feel free to pass along!

Lyme disease has been a growing concern in Ireland. Carried by ticks, Lyme disease can range from a mild illness if caught early to severe, life changing symptoms. It can affect the heart, muscles, joints, tissues, endocrine & neurological systems. Ticks can carry a multitude of infections. Studies in Ireland have been very slow since the retirement of Prof Gray; Gray has written scientific articles about Lyme disease in the 90s which we have collated on our site at: https://ticktalkireland.wordpress.com/irish-related-studies/

Treating & testing of Lyme disease patients is fraught with controversy & political battles, the HSPC, IDSI, RCGP prefer to treat patients with short term antibiotics following the inflexible guide of the IDSA (American Infectious Disease Soc) – many patients go abroad to find someone willing to treat them longer under the guidance of ILADS (Intl Lyme & Assoc Diseases Soc). This of course occurs at great expense to the patient. Integrative therapies are being used much more often as Lyme can cause much disruption to the immune system to warrant just antibiotics alone. We feel there is a need for an integrative type clinic in Ireland who would be willing to take on complex patients, so they don’t have to travel abroad.

If any centre or individual practitioner is interested (or even students learning about integrative therapy) I would like to offer some pointers below in the view of upcoming conferences, useful books/protcols & information on testing just to provide some additional background information.

Testing:

This can be a tricky topic – most commonly antibody tests are used however test too soon & the body may not be creating enough antibodies, tests can also be affected by the strain of bacteria, immune response of the patient or affected by use of antibiotics early in treatment (as it may abrogate immune response). Some patients & lyme specialists use alternative tests abroad such as LTT (T cell tests), CD57 NK (whilst not diagnostic it can show a depleted immune system) & sometimes Igenex testing is used which uses a different set of bands in a Western Blot (WB is a secondary test however lyme specialists prefer to skip the first tier Elisa or C6 Elisa test & go straight to the more specific test).

For more info on testing head to our section on ‘suspect lyme’ http://www.ticktalkireland.org/suspectlyme.html

For a summary on testing, treatment, history, structure of bacteria etc go to: https://ticktalkireland.wordpress.com/newcomers-guide/

Conferences:

Coming up are 3 conferences that may be of interest:

1. Lifting the Veil – Infectious Pathogens & Their Role in Chronic Disease

Academy of Nutritional Medicine, Sunday, 8 March 2015 from 09:30 to 18:00 (GMT) London

ME, FMS, Autism & Lyme Disease.. (Lab specialist Armin Schwarzbach will be present. He runs the newly opened Armin Labs / prev worked at Infectolabs in Germany.) He may be able to help with any questions on lyme disease testing.

https://www.eventbrite.co.uk/e/lifting-the-veil-infectious-pathogens-their-role-in-chronic-disease-registration-15714304909

2. Natural Therapies for Lyme Disease, March 28th 2015

Half-day workshop at Holiday Inn, Regents Park,
Carbuton Street, London W1W 5EE, from 9.30 am – 1.00 pm.

Judy Rocher, therapist and education manager of Rio Trading, will be discussing Lyme Disease and natural therapies such as the Cowden protocol (condensed and full). This course is hosted by AONM.

Course fee: £12/goodie bags with products above and beyond this will be distributed. The event is CPD accredited. To register, please go to http://tinyurl.com/Therapies-for-Lyme

3. Integrative Therapies for Lyme disease – April 10-11 2015 (Netherlands)

With a focus on Beyond Balance herbals – speakers inc Gedroic, Schwarzbach & Klinghardt (speakers are well known in the Lyme arena; we have no experience of Beyond Bal herbs)

http://www.invintro.eu/en/content/conference-2015

4. ILADS International Lyme Conf Germany 8-9 May 2015

ILADS always has wonderful & very knowledgable speakers, discussed will be testing & treatment covering various tick-borne diseases & inc paediatric health care. Often exhibiting is Cowden, a supplier of herbal tinctures for Lyme & co.

http://www.ilads.org/lyme_programs/augsburg/ilads-augsburg-lyme-conference.php

Herbal protocols:

Over the years many protocols have been developed to help treat a complex disease such as Lyme disease, the ones most commonly used are Buhner herbs (we highly recommend his book Healing Lyme Disease, a new version is due out this Spring). This website is useful to get an idea of the core protocol although the book covers much much more. http://www.buhnerhealinglyme.com/

Cowden is a protocol made by Nutramedix, they can be used individually or full monthly protocols are available. Some practitioners/herbalists are able to apply for a reduced price protocol for one patient per practice for those who are eligible (on low income). Cowden also hold workshops at conferences around Europe where they offer reduced protocols for any practitioner/therapist that attends. These protocols cover heavy metals as well as immune support, detox & protection against multiple infections (viral, bacterial etc). More information available at: http://www.nutramedix.ec/ns/lyme-protocol

Byron White is another herbal program that patients use, it is very strong going by feedback from patients & only available via a practitioner.. http://www.byronwhiteformulas.com/

There is a whole wealth of alternative med information out there & I have selected the top 3 most regularly used by patients as a guide. More info on alternative medicine is available on our site at: https://ticktalkireland.wordpress.com/lyme-links/alternative-treatment/

Expertise:

I would also highly recommend Dr Horowitz’ new book released last year on ‘Why Can’t I Get Better’ – an integrative doctor with a wealth of experience & a regular speaker at conferences. The book contains a checklist of symptoms to help in diagnosis of patients: http://www.amazon.co.uk/Why-Cant-I-Get-Better/dp/1250019400/

Finally I’d like to offer you an excellent presentation by highly esteemed lyme specialist Dr Harris who compiled this extensive review of herbal protocols in relation to Lyme & other tick-borne infections.. http://www.acimconnect.com/Portals/0/Events/Dallas%202013/Presentations/Harris-%20DFW%20June%202013.pdf

NB: we have a wealth of information also in our links section on this site at: https://ticktalkireland.wordpress.com/lyme-links/

Or  check out our downloadable leaflet.

I hope this information is of interest to you & your colleagues & I wish you all the very best. Tick Talk Ireland.

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What we’ve been up to!

Useful links & what we’ve been up to!

*For anyone new to the world of Lyme, download our newcomers guide at: https://ticktalkireland.wordpress.com/2013/08/01/help-for-newcomers/

*Suspect Lyme? See our post for more information…
http://www.ticktalkireland.org/suspectlyme.html

*Chronic Lyme – truth or dare? Check out these links to make up your own mind! https://ticktalkireland.wordpress.com/lyme-links/chronic-lyme/

*IDSA guidelines authors are of the opinion that Lyme cannot persist & seronegativity is an unusal occurrence right? Not so! Check out this link for more! https://ticktalkireland.wordpress.com/2010/07/28/persistence-seronegativity/

*But won’t those patents really tell us what’s going on? Makes for interesting reading anyway! https://ticktalkireland.files.wordpress.com/2011/10/a-look-at-patents1.doc

*Lyme is just one big Myth! Let’s bust them once & for all..

https://ticktalkireland.wordpress.com/2011/06/01/dispelling-the-myths/
https://ticktalkireland.wordpress.com/2012/08/24/mythbusting/
https://ticktalkireland.wordpress.com/2014/08/18/hidden-in-plain-sight/

*Check out our compendium (30 pages of studies, newspaper, radio & TV interviews) all related to Lyme in Ireland (current to Dec 2014): https://ticktalkireland.files.wordpress.com/2014/01/ireland-articles1.doc

*or our Lyme links section for more recent updates https://ticktalkireland.wordpress.com/lyme-links/

*So then, what treatments do you recommend. As we’re not doctors we can’t recommend any but we can give ya all the links ya need!! https://ticktalkireland.wordpress.com/lyme-links/lyme-treatment/

*Burrascano Treatment Guide (PDF)…

http://www.ticktalkireland.org/Dr%20Burrascanos%20Guide%202008.pdf

*Or for natural antibiotics check out our link at:

https://ticktalkireland.wordpress.com/lyme-links/alternative-treatment/

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

https://ticktalkireland.wordpress.com/2014/10/23/herx-rattle-roll/

*So what can you tell me about testing? There is no 100% accurate test for Lyme however the ‘gold standard’ is the 2 tier test which can have its problems. Alternative test info is available on our site at:

http://www.ticktalkireland.org/testing.html

(or check out our newcomers guide -see first link at top of page)

*Our blog site has extensive information on the differences, strengths & weaknesses of various methods of testing suitable for scientists, students, medical staff as well as curious patients!

https://ticktalkireland.wordpress.com/lyme-links/testing/

What has Tick Talk been up to?

Articles…….

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

FAQs…http://www.ticktalkireland.org/faq.html

Books…….

Over 2,500 copies of our new book ‘The Adventures of Luna & Dips’ was distributed among schools in Ireland together with a teacher’s pack. A free copy of the book & poster was sent to libraries in some parts of the country.

Order ‘The Adventures of Luna & Dips’ on Kindle (New Apr 2015)

http://www.amazon.co.uk/Adventures-Luna-Dips-Jenny-ODea-ebook/dp/B00VS46RIQ

Accompanying Poster

http://www.scribd.com/doc/138974973/Luna-Poster?secret_password=1fnt40cczjf4bpwg4g1k

Conference June 2012….

Irish Lyme Conf 2012: pic by Mary Smyth

Irish Lyme Disease Conference Dublin June 2012 http://www.ticktalkireland.org/conferencereview2012.html

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

Leaflets & Handouts….

Irish Lyme Leaflet
http://www.ticktalkireland.org/lymeleafletsept2013.pdf

Information Handout
http://www.ticktalkireland.org/handoutforhealthtalknov2013.pdf

School Info Sheet
https://ticktalkireland.files.wordpress.com/2012/06/teachers-notes1.doc

Download Symptoms Chart
http://www.ticktalkireland.org/symptomschart.html

Letters…..

Letter to the Medical Card Review Team June 2014
https://ticktalkireland.files.wordpress.com/2014/06/medical-card.pdf

Letter of Concern to the HPSC, Minsiter of Health, EU CDC & UK PM https://ticktalkireland.files.wordpress.com/2012/11/letter-concern-web1.pdf

Letter to HPSC, IDSI & other health organisations https://ticktalkireland.files.wordpress.com/2012/11/idsi-et-al.pdf

Minutes of our Meeting with the HPSC (Health Protection & Surveillance Centre) https://ticktalkireland.files.wordpress.com/2013/02/hpsc-minutes.pdf

Petition to European Parliament & Minister of Health Ireland https://ticktalkireland.wordpress.com/lyme-links/survey-petition/

Lyme Links……

A links page has been set up to cover a whole multitude of subjects in alphabetical order, everything from testing to symptoms to lyme & ME, lyme & MS, rashes, herxing & more!

https://ticktalkireland.wordpress.com/lyme-links/

Merchandise…..

http://www.ticktalkireland.org/merchandise.html –

NB: the store is now closed however check out the link for tips on where to buy alternative supplies

News……

This link contains many Irish related articles including news articles with Tick Talk members & volunteers! https://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/

Radio…….

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

Research…..

Tick Talk has been working closely with Lyme Research UK & Ireland team to help collate studies relevant to testing. Lead researcher of the team also presented her social studies survey looking at experiences of Lyme patients in UK & Ireland at our lyme conference 2012.

A copy of her talk is available on our conference disks (we have some left – available free by sending an SAE!)

Some links on studies/articles undertaken by the group available at:

http://lymeresearchuk.org/research/

http://lymeresearchuk.org/links/

http://lymeresearchuk.org/testing-for-borrelia/

Support….

We can provide limited amount of help & advice however none of us on the board are medically qualified & our team is very small. We hope a lot of the information & links provided will offer assistance & talking to other members on our groups below. (PS no doctors can be named in public to protect them as much as possible)! If you do need to contact us we can be contacted here at: http://www.ticktalkireland.org/contact.php.

Please Note: We are a very small team & as such cannot offer telephone support to patients.

Surveys…..

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

2014 results avail at:
https://ticktalkireland.wordpress.com/2014/05/28/survey-results-2014/

2012 results avail at:
https://ticktalkireland.wordpress.com/2013/04/08/news-update-spring-2013/

2011 results avail at:
https://ticktalkireland.wordpress.com/2012/01/19/latest-survey-results-ireland/

Tick Sweeps….

Tick Talk has gotten close & personal with a few ticks in Portumna Forest. We didn’t have to go far into the forest, there were numerous samples found in the picnic area, around the tables where people had been eating & around the bases of trees where children had been playing & even in the short grass in the area for picnic blankets – be wary out there!

Some pics of the ticks collected can be found at:

http://www.ticktalkireland.org/ticksweeppics.html

TV…..

Pauline from Tick Talk speaks on TV just before our conference in 2012! http://vimeo.com/44034845

Pauline also appeared on TV3’s Morning Show however the link is no longer valid!

Videos……

Talk by Tick Talk Ireland http://www.youtube.com/watch?v=216PqMYn99Y

Slides by Tick Talk Ireland http://www.youtube.com/watch?v=LayW4TQXLuc

Video to support Wordwide Protest http://www.youtube.com/watch?v=3J0rZezwY7g

Fundraiser for children’s book project http://www.youtube.com/watch?v=xLSQhAl7AIE

Websites….

Facebook Group http://www.facebook.com/group.php?gid=44960753282

Facebook Fan Page https://www.facebook.com/pages/Tick-Talk-Ireland-Lyme-Disease/115731715179208

Facebook Herbal Group https://www.facebook.com/groups/263709223729311/

Twitter Feed https://twitter.com/ticktalkireland

Blog Site https://ticktalkireland.wordpress.com/

Main Site http://www.ticktalkireland.org/

(PS loads more guides, books, support group links available on our blog site – see right hand menu for more at: https://ticktalkireland.wordpress.com/)

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Hidden in Plain Sight!

Hidden in Plain Sight

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

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

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

Some Interesting facts about borrelia…

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

The fastest speed recorded for a spirochete is upward of two orders of magnitude above the speed of a human neutrophil, the fastest cell in the body. This alacrity and its interpretation, in an organism with bidirectional motor capacity, may well contribute to difficulties in spirochete clearance by the host.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0001633

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

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

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

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

About the spirochete:

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

Granules or blebs:

Lyme spirochetes have also been seen shuddering violently or breaking into pieces, producing small particles called granules or blebs. Radolf and Bourell (1994) believe that the granules are “pinched-off” bits of cell wall which have been shown to contain DNA material (Brorson and Brorson 1997). ..Others have observed the formation of blebs in response to the presence of a strong immune response or powerful antibiotics, suggesting that granule formation is another way that Bb survives the action of bactericidal agents (Sadziene and others 1994, Dever and others 1993).
https://www.natcaplyme.org/lyme-topics/the-borrelia-genus/2.html

L-Forms:

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

Cyst Forms:

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

Biofilms:

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

Biofilm protocols have five main goals:

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

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

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

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

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

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

Testing, Testing..

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

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

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

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

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

A patient who had the foresight to look at other patients blood (most with a previous diagnosis of ME) under the microscope has some amazing high quality pictures & video footage. You will be shocked by what he found, especially as most of these patients were negative by NHS testing (although positive by private tests such as Igenex & LTT). Why not take a look at:
http://counsellingme.com/microscopy/SpirocheteBloodMorphology2.html

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

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

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

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

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

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

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

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

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

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

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

Patient Power –

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

Here’s some ways we have made a difference…

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

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

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

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

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Medical Card Review

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

Per the HSE website:

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

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

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

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

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

Useful resources:

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

Open Learning Centre!

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

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News updates May 2013

Luna has landed!

Our new children’s book ‘The Adventures of Luna & Dips’ has been a great hit. We managed to find a home for all our copies before they’d even arrived from the printers. Thanks to all the schools who have asked for copies for their children. Teachers came to me saying they knew of someone with lyme disease, a sister, a friend, their own family & in some cases children in the class had been sufferers too. Hopefully the book will help to prevent more cases of the disease by raising awareness.

Click below to read Luna on kindle (kindle apps can be downloaded for laptops, phones & PCs):

Adventures of Luna & Dips

Luna & Dips is copyrighted by Jenny O’Dea – all rights reserved.

If you like Dave’s wonderful illustrations feel free to check out his website at: http://http//www.talenthouse.com/davefarrelly or his facebook page.

Download a poster for schools

Download notes for teachers
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Happy Lyme Awareness Month 🙂

Well the month of May is International Lyme Awareness Month & Tick Talk are celebrating by offering several special offers on our merchandise. As well as the current offer of 20-25% you can now also receive the following…

* For any orders over 15 euros – receive a FREE lyme ribbon with gold pin

* For any orders over 25 euros – receive a FREE set of tick pincers by care plus & ribbon

* For any orders over 35 euros – receive a FREE Tick Talk Ireland hi-vis vest, tick pincers plus lyme ribbon

All this ON TOP of saving up to 25%. Amazing value but only available until end of May & while stocks last.

To hop to our merchandise store head on down to: http://www.ticktalkireland.org/merchandise.html

Please note that discounts (20-25%) will show up in shopping cart, advertised prices on site are before discounts applied!
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More research needed

Can you help pave the way for research? Dr Eva Sapi, a speaker at our lyme conference last year has been doing some amazing research. From looking at biofilm, to the types of herbs that tackle lyme to the most effective antibiotics. She has also been involved in the new test offered by Advanced Labs. Now she is looking for funding to help her team acquire a very high end microscope.

If you can help with pledges no matter how small the website is: http://www.indiegogo.com/projects/stop-the-suffering-with-lymedisease-org-support-dr-sapi-s-research?c=home

Tick Talk fully supports those who look beyond the narrow view that lyme cannot be chronic & any scientists or doctor that strives hard to find better treatment & testing for lyme patients are heroes in our eyes!
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Get ready to rumble!

Finally a reminder that the Worldwide Lyme Rally is due to take place May 10/11th at a number of venues across the world. The UK have a terrific website explaining their mission at: http://worldwide-lyme-protest.org.uk/

Check out this video explaining how the worldwide protest project was started..

This video show patients around the world including some patients from Ireland..

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News Update Spring 2013

New Book out written by Jenny O’Dea

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

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

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

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

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

Tick Talking While You’re Walking – Tick Survey Ireland

https://www.surveymonkey.com/s/B3XTJL2

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

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

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

Lyme Survey

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

http://www.surveymonkey.com/s.aspx?sm=qqrP_2bn_2bqPQSryRKHMTyJ1w_3d_3d

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

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

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

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

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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!
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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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