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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).

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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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Flyers for the Lyme Disease Conference in June are now available – if you would like copies for your local GP, vets, school, library, bank, walker’s groups, brownie groups, hospitals & so on, please feel free to drop us a line using our contact form with a number of how many you’d require & a contact address for posting!

As a reminder early bird prices for the hotel end March 4th (now extended to March 18th) – please quote TICK TALK IRELAND when booking with Clontarf Castle Hotel. Early bird prices for the conference expire March 31st. For more details of prices, starting times, accomodation & speakers head on down to:
http://www.ticktalkireland.org/lymeconference.html
or see our blog post at: https://ticktalkireland.wordpress.com/2012/02/01/lyme-disease-conference-in-ireland/

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Clontarf Castle, Dublin. 5/6 June 2012

WHEN:

Half day Tuesday 5th June – protection & prevention tips, plus tick-borne infections in animals

Full day Wednesday 6th June – lyme disease in humans including testing, treatment & research

WHERE:

Clontarf Castle, Dublin (close to the airport, city centre, motorways & ferry terminals)

WHO:

The conference will be suited to the following audience:

Tuesday session – members of the public who enjoy walking, camping or hunting, pet owners, farmers, park rangers & vets

Wednesday session – patients of diagnosed or suspected tick-borne diseases, doctors, nurses & interested scientists

TOPICS OF PRESENTATIONS:

Afternoon Tuesday 5th June:

Jenny O’Dea: Lyme Disease in the UK & Ireland – results of our tick studies & plus methods of protection
Dr Healy: The Factors Influencing the Density and Distribution in Space and Time of the Tick Ixodes ricinus
Dr Paul Nolan (GP, Ireland): Prevention is better than no cure
Jyotsna Shah (Igenex, USA): A comprehensive approach for diagnosis of Lyme and associated Diseases
Mícheál Casey (Head of Regional Vet Labs): An overview of tick-borne disease in Irish farm animals

All day Wednesday 6th June:

Dr Joseph Jemsek: – Dawn of a New Paradigm in Chronic Illness – The role & relevance of Lyme Borreliosis Complex
Dr Eva Sapi: – Killing Borrelia – is it possible?
Dr Armin Schwarzbach: Staging processes in the laboratory diagnosis of Lyme and co-infections by indirect laboratory tests
Dr Jean Monro – Supportive therapies for the Nervous System
Kate Bloor: An online survey of Lyme patient’s experience of health care in the UK and Eire
Nicola Darrell: Herbal Treatments for Lyme Disease – a look at treatment for lyme & management of post lyme symptoms

Please note that space will be allocated to allow for questions & answers

For details on registration & conference starting times please click here and for information on places to stay please click here. Cheap Flights are available through Ryanair or Aerlingus.

To reserve your ticket for the Lyme Conference go to:Conference Reservation

We also welcome exhibitors & sponsors, more information available on the link above.

Notes:

Conference Bookings:

Please note to avail of the early bird special (a saving of 5 euros per person) bookings must be received by 31st March 2012

Half Day Tuesday 5th June: registration begins at 1pm, conference runs from 1.30 to 5pm = 20.00 Euro (*price will rise to 25.00 from 1st April) – coffees are included in the price

Full Day Wednesday 6th June: registration begins at 9am, conference runs from 9.30 to 5pm = 40.00 Euro (*price will rise to 45.00 from 1st April) – coffees & buffet lunch are included in the price

Both Days (afternoon 5th June / all day 6th June): registration & conference times above are applicable = 50.00 Euro (*price will rise to 55.00 from 1st April) – coffees both days & buffet lunch on Wednesday are included in the price

For payments by cheque or money order please contact us for address details.

*Please retain your paypal receipt to show on arrival*

Hotel Accommodation:

Clontarf Castle has offered a rate of 109 per room (single) & 119 per room (double). To obtain this rate please quote the ref code: TICK TALK IRELAND – Valid until 4th March (now extended until March 18th) 2012 (for more choices on accommodation please click here)

Exhibitors:

Price includes 4ft table, coffee & wed buffet lunch (where applicable). Max 2 per table booked. 50% deposit payable now, remainder due 31st March 2012.

Please click here to download exhibitor’s booking form, more details are included on the form.

Coming from the UK? Here’s some tips on how to get to Ireland:

By Air:

Cheap flights are available through Ryanair or Aerlingus.

Euroline coaches:

Travel to Ireland with Eurolines is easy, we provide a range of services to over 40 destinations with prices starting from just £42 return to Dublin (price includes transfer by ferry)

Services operate from most major cites in Britain including Birmingham, Bradford, Bristol, Cardiff, Leeds, London and Manchester arriving at city centre locations saving on the need for expensive airport transfers.

http://www.eurolines.co.uk/coach/Destinations/Ireland/Ireland-index.aspx

Sail/Rail:

Why not combine the convenience of rail travel with your ferry crossing? Prices start from £32 per person each way.

http://www.irishferries.com/gb/fares-offers-ireland-from-britain.asp?tab=fares-sail

Irish Ferries:

Save up to 25% Car plus 1 from £79 one way. From £79 online fare for you and your car is valid for midweek travel (Mon – Thurs) on all cruise ferry services up to 30 June 2012. Must be booked a min of 7 days in advance of travel date and by the 27 Feb 2012.

http://www.irishferries.com/gb/fares-offers-ireland-from-britain.asp?tab=fares-sail

Stena Line:

Travel by ferry to Ireland with the Irish Sea’s leading ferry company from only £79 single for a car plus driver. Speed across the Irish Sea from Holyhead to Dun Laoghaire on our fastcraft or cruise over to Dublin City onboard one of our stylish Superferries.

http://www.stenaline.co.uk/ferry/ferries-to-ireland/

NB: Please note that Dublin Port & Dun Laoghaire are 2 seperate ports of entry to Dublin. Important to note when looking at directions to the hotel 😉

Wheelchair friendly hotels:

http://www.accessibleireland.com/search_by_county.php?county_id=1&facility_id=1

Wheelchair friendly B & B’s:

http://irelandbnb.com/dublin-bed-breakfast-wheelchair-access.html

Other B & B’s in the area:

http://irelandbnb.com/clontarf-bed-breakfast-dublin.html

Hotel Accommodation:

Clontarf Castle has offered a rate of 109 per room (single) & 119 per room (double). To obtain this rate please quote the ref code: TICK TALK IRELAND – Valid until 4th March 2012.

Other hotels in the area:

for more choices on accommodation please click here! 🙂

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