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Posts Tagged ‘Lyme Conference’

IDSA Guidelines Removed

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 They are using outdated science & yet the Irish Health Protection & Surveillance Centre, Infectious Diseases Society of Ireland, Irish Society of Clinical Microbiologists, Irish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

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

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

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out the recent petition by a Patient Centered Care Advocacy Group who want to stop preferential treatment using IDSA outdated advice & give patients the option to use ILADS guides where warranted.

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

 

Meetings

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

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

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

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

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

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

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

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

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

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

For other patient led meetings go to:
https://ticktalkireland.wordpress.com/2013/12/02/hear-hear/

 

Videos

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

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

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

 

Doctors

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

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

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

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

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

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

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

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

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

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

Vis Symposium

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

Ann conf 2016

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

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

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

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

Conf agenda

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

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

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

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

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

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

 

Survey results:

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

Snippets from the Lyme survey – full report available via PDF

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

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

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

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

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

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

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

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

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

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

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

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

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

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

clipboard


Snippets from the Tick survey
– full report available via PDF

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

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

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

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

Was the tick attached when found?

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

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

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

Tick-Talk-Logo-Ribbon

 

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Nice guidelines

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

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

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

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

 

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

 

Lyme prevention!

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

Why It’s Important to Protect Your Family from Ticks

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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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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!

Rear view of a teenager girl standing in a field of tall grass
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. lyme protest 1

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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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Hidden in Plain Sight

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

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

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

Some Interesting facts about borrelia…

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

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

ILADS

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?!

question mark

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

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

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

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

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

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

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

Patient Power –

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

lyme protest 1

Here’s some ways we have made a difference…

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

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

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

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

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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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