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Posts Tagged ‘Lyme News’

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).

ILADS

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

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

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

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

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

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

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

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

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

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

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

Plus our letters in the past
Letter of Concern, Letter to the IDSI et al, Letter following consensus documentThe Big Lyme DebateMinutes from meeting with HPSC, ..

luna front coverluna back cover

Luna Tick is looking for readers!

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

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

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


Is Lyme the new Aids?

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

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

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

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

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

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

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

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

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.

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:
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:

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.
https://durayresearch.wordpress.com/

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..
http://whatislyme.com/please-help-dr-alan-macdonald-fund-his-lyme-research/

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.
http://www.newhaven.edu/faculty-spotlights/eva-sapi/

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
http://www.johndrullelymefund.org/

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.
http://danielcameronmd.com/lyme-research-and-insights/

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.
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 xxxSanta Waving Through a Circle

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

New Article – Health & Safety in the Countryside

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 Booluna front coverk – 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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Tick Talk Ireland Logo by Pauline Reid

Useful links & what we’ve been up to!

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

*Suspect Lyme? See our post for more information…
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/

do you want lime with that?!

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

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 luna front coverin Ireland together with a teacher’s pack. A free copy of the book & poster was sent to libraries in some parts of the country.

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

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….

pic by Mary Smyth

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….

Portumna larval 2
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……Connaught Tribune Spring 2014

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

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:looking glass

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….

15 ticks Portumna Sep 18 2011_1
Tick Talk has gotten close & personal with a few ticks in Portumna Forest. We didn’t have to go far into the forest, there were numerous samples found in the picnic area, around the tables where people had been eating & around the bases of trees where children had been playing & even in the short grass in the area for picnic blankets – be wary out there!

Some pics of the ticks collected can be found at:

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/)

Tick-Talk-Logo-Ribbon

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Picture courtesy of freebies.about.com

Happy Easter everyone!

A time of getting together & celebrating the warming weather. Whilst enjoying the beautiful blossom on the trees & catching up with the dreaded weeding & lawn mowing (how those dandelions grow!), here’s some quick tips on preventing tick-bites & protecting your garden.

Protecting your children:

Look out for tick repellents for sensitive skin or natural products or DEET with lower strength can be used but may need to be applied regularly. Check your children at regular intervals for anything crawling on them as they may be looking for a spot to feed. Remember that ticks can be very tiny, the nymphs are about the size of a poppy seed & adults the size of a sesame seed. They are very flat & may look blackish or red & black when unfed, as they begin to feed they begin to puff up like a raisin or sultana & can change colour to various tones of blues or greys. If you see a tick crawling & flat it is unlikely that it has bitten anyone but do keep a look out for anymore that may have gone unnoticed. Behind the ear, hairline, back of neck, back of knees & even groin area can be favourite places for ticks to hide.

If you see a tick attached to the skin find some fine tipped tweezers & remove gently keeping the tweezers as close to the skin as possible to ensure the head parts are removed cleanly. Wipe the area clean with an antiseptic wipe, place the tick in a clear sealable plastic bag (a freezer bag or similar) & write on it the date of the tick bite. This may be helpful if symptoms do occur. Tick removal tools such as tick twisters are great tools for removing ticks on humans & pets as well. If you have no removal tools or tweezers to hand, you can try fine cotton wrapped as a noose around the base of the tick’s body, again keeping close to the skin to remove the head, as leaving the head behind may cause secondary infection.

If a tick has bitten your child please keep a look out for symptoms. It may take days or weeks for symptoms to develop. Not every tick will be infected but it’s worth taking watchful care anyway to prevent a more serious disease developing further down the line. First signs of disease may be a summertime flu, excessive tiredness when the child is normally lively, feeling of being unwell & achy, a rash that may expand outwards from a central ring & begin to take the shape of a dartboard. Not all patients will notice or have a rash (& sometimes the rash may appear more uniform rather than in rings) so if your child feels unwell after a known tick bite it is worth seeking medical advice. Also if your child has a rash but otherwise has no other symptoms do still seek advice as at this early stage of infection it is highly treatable with antibiotics. (Please note that some reddening may occur at the site of the bite which may just be irritation. A Lyme rash tends to develop days later & begin to spread outwards from the centre)..

If left to spread throughout the body more complications can occur such as developmental problems, severe headaches, difficulty concentrating, poor sleep, neurological symptoms such as tingling & numbness plus muscle aches & joint pains.

We don’t want parents to panic but just to be aware of the dangers of ticks.

Hot spot areas for ticks tend to be in national parks areas (eg Glenveagh, Killarney, Connemara, Portumna & Wicklow) where there are high concentrations of birds, mice, other small mammals, deer, humans & pets. Ticks can be carried by many animals & birds & are attracted to Carbon dioxide so families & their pets can be unwitting hosts to a hungry tick! Please note however that from our own online tick survey that people are reporting ticks in burren land, near lakes as well as gardens, so forested areas are not the only spaces to watch out for ticks. Farm owners are also at risk, as well as hill walkers, campers, hunters, runners & pet walkers too!

Ticks collected in Ireland

Ticks collected in Portumna Forest, Ireland

Protecting Yourself & Pets:

Pets can be treated with flea & tick repellants however it’s worth checking them regularly as it has been known for pets to still carry ticks on their fur into the house even when treated (from personal experience!) Be careful with cats as some products for using on dogs is highly toxic to cats. For humans, DEET products are recommended however this may not be 100% effective (as reported by a tick researcher in the US) so may need to still be vigilant & check your outer clothes immediately after a walk & underneath clothing as soon as you get home.

Ticks can survive water (they can survive a wash cycle for example) however they struggle with dry heat so a suggestion is to put any clothes that may harbour ticks into a hot dryer for at least 20 minutes. If ticks are found on you or pets, follow the tips in the children’s section above.. It’s recommended whilst out walking to wear light coloured clothing to see any black specks on you that might be ticks, & tuck trousers into socks as ticks can climb up inside your clothing. Tick bites are painless & usually non itchy so remember to keep checking the site of the bite every day for several weeks, as the bulls-eye rash associated with Lyme disease can & may take weeks to develop. If no rash is present but other symptoms occur (such as summertime flu, bell’s palsy (paralysis on one side of the face) or severe meningitis type headaches) do get checked out by the doctor, early diagnosis & treatment is vital to prevent more serious disease. Lyme can develop in stages & worsen over time so even if symptoms are mild initially it’s still worth getting checked out, especially if you have a known tick bite. Record the date of any bites that occurred & if possible keep the tick in a sealed bag or container to show the doc if symptoms do occur..

A great link on tick removal tips available at: http://www.ticktalkireland.org/howtoremoveaticksafely.html

This page has pictures of lyme rash to look out for: http://www.ticktalkireland.org/faq.html#lymerash

Protecting Your Garden:

Ticks are hardy creatures & can survive very cold spells (as long as they have some snow or leaf cover) & can survive very wet conditions but dryness can kill them. To survive they climb up to the end of blades of grasses waiting for hosts to brush by until they start to dehydrate (dessicate) at which point they move back down into the base of the grass to be shaded & retain moisture. This means that lawns kept very short with any leaves & wood piles cleared away should help deter ticks. Also paths around the edge or gravel type borders can help deter them. Plants can help deter ticks such as Lavender, Rosemary, Sage, Marigolds & Rose Geraniums. If possible avoid too much bird food on the ground as this can attract ticks for several reasons, mice may be attracted to the dropped bird food & they can carry ticks, ground feeding birds such as robins & thrushes are a popular way for ticks to hitch a ride & hedgehogs too can bring ticks into the garden as well as squirrels.

A great link on protection is available at: https://ticktalkireland.wordpress.com/lyme-links/prevention/

Permethrin can also be used on clothing (although not directly on skin). It can withstand several washes so ideal for camping or hiking. This site has a selection of different tick repellant products http://www.purpleturtle.co.uk/acatalog/Ticks.html

If you have a permethrin spray be careful near cats as can be very toxic: http://www.icatcare.org/permethrin/owner-info

Lyme Wifey has some great tips also on protecting your garden..
http://lymeywifey.blogspot.co.uk/2014/04/tick-tubes.html

More Info

Check out our FAQ page for more info on lyme disease http://www.ticktalkireland.org/faq.html

We have a leaflet available for anyone who would like one. Single copies can be downloaded at http://www.ticktalkireland.org/lymeleafletsept2013.pdf (PDF).

If you can help distribute leaflets in your area at librairies, family centres, youth clubs, vets etc etc feel free to drop us a line using our contact us page.

Tick Awareness Week

Did you know that the Health protection & surveillance centre has marked the week of 19th-23rd May as tick awareness week? Keep an eye out in newspapers for articles. For information available on their site check out http://www.hpsc.ie/hpsc/A-Z/Vectorborne/LymeDisease/

Also the HSE has some information at http://www.hse.ie/eng/health/az/L/Lyme-disease/

Our main website has lots of information on symptoms & testing http://www.ticktalkireland.org/index.html

Two other great sites are: BADA & LDA (both in UK).

For anyone studying Lyme, doctors who’d like to learn more, students or scientists or interested patients we have an extensive links section on our site covering everything from Lyme & the eyes, Lyme & the heart, Lyme rashes, connections between MS, ME & Parkinson’s, seronegativity, persistence, borrelia (Lyme causing bacteria) under the microscope & so much more https://ticktalkireland.wordpress.com/lyme-links/

How bad is Lyme disease in Ireland?

Cases are cited between 50-100 cases per year. This may seem small, however we feel that due to overlapping conditions with progressive illnesses such as ME, MS & Parkinson’s that many diagnoses may have been missed. Some may not realise that Lyme can be picked up in Ireland & therefore testing is not initiated by the doctor or symptoms may not be tied to a previous tick bite by the patients themselves. Some patients may miss stage one of the disease & go on to suffer with disseminated Lyme years later making diagnosis difficult. Blood testing if done too soon can be false negative (as it may take 4-6 weeks to develop enough antibodies). Those infected a long time may even have a depleted immune system affecting tests results especially if infected with other conditions that can be carried by ticks. Antibiotics can affect results & different strains may throw up different results on the bands used for blood testing, causing confusion when interpreting results. Therefore patients may not be tested at all or false negative results may lead to not all cases being reported or treated.

In studies by Prof Gray in 1996 he found that of ticks collected in Killarney National Park Co Kerry, up to 29% of them were carrying borrelia (that causes Lyme disease). Some people who are bitten maybe carrying the bug without any problem & become silent carriers. However a knock in the immune system such as after a traumatic event (car accident, stressful life event, another illness or even surgery) can cause the infection to bubble up. So we feel that it is worth taking precautions & it’s worth being aware of the possible dangers to protect you & your family!

Luna Rising!

luna front cover luna back cover

Last year Tick Talk Ireland’s co-founder Jenny O’Dea wrote a book for children called the Adventures of Luna & Dips. Initially it was a bit of fun to fill a bit of time during sleepless nights(!) but on fruition the story was transformed into a book complete with wonderful illustrations by Dave Farrelly. Having received funding (with huge thanks) we distributed more than 2500 books across schools in Ireland, & some libraries complete with poster & informational pack.

Although we’re out of copies the book is still available to read on the following site: http://www.scribd.com/doc/138970319/Adventures-of-Luna-Dips (registered members can download the copy however it can be read without subscribing just by scrolling down the page to move through the chapters).

We also have a poster available at: http://www.scribd.com/doc/138974973/Luna-Poster?secret_password=1fnt40cczjf4bpwg4g1k

For any parents reading this they may also like our colouring posters available on the following page: https://ticktalkireland.wordpress.com/2012/06/27/if-ticks-could-talk-contents-page/

May Meetup!

Are you a Lyme sufferer in Ireland? Or not yet diagnosed but wanting advice? Why not head on down to the Anner Hotel in Thurles on 18th May! 20 or more patients are meeting up for a meal in a private setting.

If you’d like to come & join in we can be emailed via info(AT)ticktalkireland.org (replace AT with @ before sending) & we can forward this onto the organisers for you. Numbers to be in by May 11th.

Surveys:

We have rolling surveys for anyone to complete. These are for members of the public who spot ticks anywhere in Ireland to report where they found them, how many, in what type of location etc. Plus a survey for vets if they come across ticks in animals being brought in, and a survey for those visiting national parks to assess what information they have for the public.

Also a survey for Lyme patients to report back on their symptoms, how they were diagnosed & how long it took for diagnosis. The next set of results should be available later this year. To access our surveys & results so far head on down to http://www.ticktalkireland.org/surveys.html

Radio Head!

Jenny O’Dea from Tick Talk & Nicola Seal from the Lymewifey blog in scotland were asked to talk on Katina Makris’ popular Lyme related chat show.

The interview can be listened to at: http://thedrpatshow.com/shows/mak-140402-odea.mp3

Katina is the author of her book Out of the Woods, being a Lyme sufferer herself she supports advocacy & awareness.

Her other radio links including some great lyme specialists & advocates can be found at: http://www.thedrpatshow.com/searchshowsAll.php?search=katina+makris&x=-951&y=-98

Conferences:

Spring is a very busy time of year for ticks (they wake up hungry) & Lyme awareness too! May is Lyme awareness Month across the world. In April, May & June there are conferences taking place in Germany, London & Norway. For more information head on down to: http://lymeywifey.blogspot.co.uk/2014/04/a-trio-of-fantabulous-european-lyme.html

This is all our newsy information for the moment. A new blog post will follow during May. Meanwhile we wish you a Happy Easter 🙂

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Your Voices are now being Heard!

Some great news – in October 2013 the HPSC mentioned that a Taskforce was being set up for early 2014 (later confirmed by Minister for Health & Children, Dr James Reilly). A tick-borne infection sub committee created a Lyme disease leaflet & poster in 2010 – let’s hope that the new committee next year will bring these leaflets out to the public & posters in national parks to warn the public of the dangers before it is too late!

More good news is that a hearing was held on 21st November at the government buildings (committee room 2) in Dublin city, Ireland – an introduction is below along with links to the transcripts 🙂

Introduction

Ireland’s very first Lyme Disease Conference was held in Dublin on 5/6 June 2012. At this event filming took place for an upcoming documentary by Lisa Vandegrift Davala & her team. On the 7th June, Lisa, via Senator MacSharry, was invited to speak to elected representatives at the Irish government offices, regarding testing & diagnosis, accompanied by Dr Shah from Igenex labs in America. Senator Moloney who met with Lisa & Tick Talk representatives at the conference, also added her support.

In 2013, following concerns over poor diagnosis & treatment in Ireland, Lyme patients Tracy Brennan & Annette Moloney met with TD’s (Irish politicians) Derek Nolan, Emmett Stagg plus Ciara Conway & Jerry Butimer of the Oireachtas Health Committee.

November 21st 2013 therefore marked a momentous day whereby Lisa, Tracy & Annette were invited to present their concerns & personal stories to the committee. Tracy & Annette were able to interview over 100 patients before the day & prepared slides of some of these cases –they involved reports from children suffering with Lyme which is heart wrenching to read, the health committee received copies of these presentations before the hearing took place.

Also invited was lab specialist Armin Schwarzbach, tick researcher Dr Eoin Healy, & head of regional vet labs Mícheál Casey. Below are some summaries of their presentations….[Please note that Tick Talk was not instrumental in pulling this hearing together, full credit goes to the patients & speakers involved!]

Links to summary, full transcript & video playback…

For Tick Talk’s summary of the event head on down to: https://ticktalkireland.files.wordpress.com/2013/12/committee-for-health-write-up.doc

A copy of the full transcript is available at: http://oireachtasdebates.oireachtas.ie/Debates%20Authoring/DebatesWebPack.nsf/committeetakes/HEJ2013112100001?opendocument

The full hearing (90 minutes) can be played back at: http://www.oireachtas.ie/viewdoc.asp?DocID=24859&&CatID=127

NEWLY ADDED 14th Dec 2013
Videos of the hearing has now also been released on Vimeo which allows for segments to be played back also (see below)..

Part 1 http://vimeo.com/80805750 Part 2 http://vimeo.com/80805749

Nolan TD was thanked for bringing it to committee’s attention & Lyme Disease may be re-visited again next year.

To see a newspaper write up check out: Irish Independent 22 Nov 2013

For a radio interview by Tick Talk member Ann Maher who was in the public gallery: KCLR 96 FM 22 Nov 2013 (Sue Nunn show)

NEWLY ADDED 14TH DEC 2013
Plus latest news article ‘I was so tired and had this feeling that I’d just collapse’

These links will be added to our Irish Related Articles section in the links page!

Soon to follow – Tick Talk’s end of year round up plus our final accounts should be available at the end of 2013. Meanwhile we do hope you have a happy, safe Christmas & a joyous/prosperous New Year!

Santa Waving Through a Circle

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lyme protest 1May 10th & 11th marks a momentous occassion all around the world. Lyme sufferers are joining hands to rally outside government offices, state buildings, parks & monuments, flash mobs are getting together, banners made, videos posted & lots of comraderie taking place. But why do patients have to rally, surely this ‘easy to cure disease’ is nothing to worry about right? Wrong! Sadly many patients are not diagnosed early enough leading to a chronic form of the disease which can be challenging to treat, symptoms multiply over time & can mimic many other diseases, testing can be hit or miss. Plus controversy surrounding Lyme disease can discourage consultants from treating. A huge change in attitude is needed across the world to ensure that Lyme patients are taken far more seriously. Here’s a video that we have put together on behalf of our sufferers in Ireland, many of whom had to travel overseas for treatment.

Backing music by Irish band Stone Trigger..

UK Rally

Patients in the UK are rallying outside the Dept of Health on Friday May 10th 2013. Tick Talk Ireland have sent some lyme ribbon balloons & stickers to add our support. We wish them well. Here’s a video showcasing UK & Irish patients (thanks for a great video guys!)

European Videos

Other videos relevant to Europe have been posted in our last blog post, one containing patients across Europe (inc UK & Ireland) & parts of Canada & another video showing how the worldwide protest was set up. Check out the links at: https://ticktalkireland.wordpress.com/2013/05/02/news-updates-may-2013/

Here’s some stories from Irish lyme patients inc some infected here & some abroad…

My experience with Lyme Disease (by an Anonymous poster in Ireland)

I completely forgot how to count loose change (& I used to work in accounts!) I literally had to throw money on the counter & stupidly wait for the cashier to do it.

I completely lost my ability to type (this may not have been obvious at the time, but every other word had to be corrected by spell checker & half the time even IT didn’t know what I was talking about!)

I used to shake my husband awake at night, my body would go into weird vibrational spasms it started to wake me up too! Think earthquake coming from within.

I used to have rigors like going into a fit (they said this was viral but rigors are a sign of a serious bacterial infection).

I would forget something within seconds, if I ask you if you want tea or coffee I would not remember the answer or even whether I’d asked the question. I would come back in the room say did I ask if you wanted tea or coffee? Yes you did. And what was the reply?

I would have a scarlet fever type flushed face you could cook an egg on but have goose bumps all down by blanket laden arms (on a daily basis).

My voice would break up on a regular occasion so I sounded like a heavy smoker (& I’m not!)

I would have random rashes that even the doc couldn’t give me creams for, as he had no idea what it was.

I would recover from the feeling of having flu only to repeat the same crap the following week after (for years at a time).

Shopping was always fun, just turning at the end of the shopping aisle would make me dizzy, my legs would buckle, the lights would give me headaches & I would feel like being sick. And the walk back to the car was not much fun either!

My bedding consists of 4 blankets, heated under blanket, heat pad for back, heat pad for hands & feather filled slippers – & that’s on on top of fleecey pjyamas!

I spend all days wrapped up in blankets even in the summer!

I just have to say ‘it’s me’ & the doctors office know exactly who’s calling, they are my new best buddies now..

I’ve made a career out of going to hospital appointments – on a waiting list for 5 specialists at the moment, go me!! But I still keep a smile on my face, this disease won’t keep me down, I’m a true fighter 😉

ann maher

Click on link for Ann’s story (word doc Ann’s story)

ben

Click on link for Ben’s story (word doc Ben’s story)

Sean O’Connor’s story

I was very healthy and fit, and i was training for The Gael Force Challenge which is an adventure/endurance race in Westport Co. Mayo. I ran it in August 2010, the terrain i was running in was ideal for ticks, and after this everything started to go wrong.

Gael Force 3 (2)First week i had constant pain in my right foot, sports injury is what i thought and the doctor agreed. Then insomnia kicked in, i was getting at most 2 hours sleep a night and the pain spread all over my body mainly on the right hand side. I was sent to A&E in Galway where i was lucky to see the same Doctor at every other visit i made to A&E after that. The first visit i had lost all power in my right foot (along with the pain and sleepless nights), the Doctor got a physio to look at me and after the first session with her she said it has to be viral. After a few more weeks of going to A&E every Monday morning, blood tests and physio i had lost 2 stone and was starting to look very sick.

On week 7 i woke up Monday morning with no feeling on the right hand side of my face, my eye and lip had dropped, so i went straight to the Doctor and he diagnose me with Bells Palsy.

We went straight to A&E where again i met the same Doctor she told me it was a symptom of a disease called Lyme, another blood test showed traces of Lyme and a lumbar puncture confirmed it. I was told i was stage 2 Lyme and had a very good chance at making a full recovery. After 2 weeks of intravenous antibiotics and 1 month of oral antibiotics i started to feel a bit better. I had on going physio to get my foot back to normal and have made a steady recovery, although i am not fully recovered (i have nerve damage to my right foot) i am lucky to be back to 90-95% health and am back running and keeping fit! Unfortunately my story seems to be rare to many are suffering and there is not enough awareness. But at least my local GP has diagnosed another person with Lyme after seeing what i went through which is a positive. Lets hope we hear of more positive stories, but the truth is they are far and few between.

*Stories from Tick Talk Ireland’s officers can be found here http://www.ticktalkireland.org/whoweare.html

*For stories of doctors with lyme (they can suffer too!) go to: https://ticktalkireland.wordpress.com/lyme-links/doctors-with-lyme/

*For more articles relevant to Lyme in Ireland check out: https://ticktalkireland.wordpress.com/lyme-links/irish-related-articles/

Luna is to be re-printed!

Our new children’s book ‘The Adventures of Luna & Dips‘ was such a hit that we ran out of copies within days. Re-prints are underway, available to schools across Ireland.

Any schools interested are welcome to contact us at info(AT)ticktalkireland.org (replace AT with @ when sending email!)

Invitation to Health & Safety Talk

Tick Talk has been invited back to speak at another Health & Safety Conference on May 15th in Kilkenny. Flyer is attached PDF (hit back button to return to page!) (Event Flyer May 2013).

Good news, Tick Talk Ireland pledged a donation to Eva Sapi’s microscope fund!

For more on the project go to:http://www.indiegogo.com/projects/stop-the-suffering-with-lymedisease-org-support-dr-sapi-s-research?c=home

may

‘The controversy in Lyme disease research is a shameful affair’ says Willy Burgdorfer

‘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’ – Dr. Willy Burgdorfer

‘The good physician treats the disease; the great physician treats the patient who has the disease’ – Sir William Osler

Dr. Kenneth Liegner, an MD treating a large number of Lyme patients in Armonk, New York, summarized the plight of Lyme physicians:

“Physicians who have cared for persons with chronic Lyme disease have faced harassment at a minimum and for some, their careers have been ruined. Researchers who have seriously dedicated themselves to the scientific study of chronic Lyme disease in humans and/or animals have often found themselves attacked or marginalized. To persist in their researches would have resulted in virtual career suicide and some have been forced, by exigencies of survival, to leave the field.”

‘Greater efforts are needed to provide education for prevention and early diagnosis to avoid late complications. Further improvements in diagnostic tests would be welcomed’
(Sue O’Connell 2010 – Inst of Medicine Workshop UA)

Chronic Lyme Disease: An Evolving Syndrome 9th Annual International 
Scientific Conference on Lyme Disease & Other Tick‐Borne Disorders 
Benjamin J. Luft, M.D. Professor 

Chronic Lyme disease patients may be seropositive or seronegative 
with or without a documented history of Lyme disease.  
 
Since Lyme disease is a clinical diagnosis, research must continue to 
improve diagnostic assays
using recombinant proteins which are more 
sensitive and specific than the whole organism sonicate used for both 
ELISA and Western blots.

Chronic neurologic manifestations of Lyme disease. Steere et al

To define further the chronic neurologic abnormalities of Lyme disease
we studied 27 patients (age range, 25 to 72 years) with previous signs of 
Lyme disease, current evidence of immunity to B. burgdorferi, and chronic 
neurologic symptoms with no other identifiable cause. 
Eight of the patients had been followed prospectively 
for 8 to 12 years after the onset of infection. 
 
http://www.ncbi.nlm.nih.gov/pubmed/2172819 

Survival of Borrelia burgdorferi in antibiotically treated patients with Lyme 
borreliosis. Preac-Mursick et al

Patients may have subclinical or clinical disease without diagnostic antibody 
titers to B. burgdorferi.

We conclude that early stage of the disease as well as chronic Lyme disease 
with persistence of B. burgdorferi after antibiotic therapy cannot be excluded when the serum is negative for antibodies against B. burgdorferi. 
http://www.ncbi.nlm.nih.gov/pubmed/2613324 

Seronegative Lyme disease. Dissociation of specific T‐ and B‐lymphocyte 
responses to Borrelia burgdorferi. Dattwyler et al

We conclude that the presence of chronic Lyme disease cannot be excluded 
by the absence of antibodies
 against B. burgdorferi and that a specific 
T‐cell blastogenic response to B. burgdorferi is evidence of infection in 
seronegative patients
with clinical indications of chronic Lyme disease.
(And yet T cell testing is being ignored by consultants around the world)
http://www.ncbi.nlm.nih.gov/pubmed/3054554 

Check out this new paper on persistence of infection (PDF download) hit back button to return to page!
IJGM-44114-review-of-evidence-for-immune-evasion-and-persistent-infecti_042213

For more on chronic lyme / persistence head on down to: https://ticktalkireland.wordpress.com/lyme-links/chronic-lyme/

To all the lyme warriors out there – GOOD LUCK for world protest day &
thank you to all the organisers who are working hard behind the scenes 🙂

shamrock

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Luna has landed!

luna front coverOur 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

looking glassCan 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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