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Autumn updates 2016

Living with Lyme Documentary

We have exciting news of an upcoming documentary, ‘Living with Lyme Disease’ which will be broadcast on Tuesday October 11th 2016 at 2100hrs(9pm) on IrishTV, Channel 191, Freest 400, irishtv.ie.

This will be available in Northern Ireland and The UK & will also be going out on other channels worldwide on Irish TV.

The documentary was put together by Lyme sufferer James Pembroke & Irish TV’s Brian Hurley. An interesting interview by Nicci St. George Smith, another Lyme sufferer is available here, she asked the guys what inspired them to put together the documentary:

 

Concerns over Killarney

As can be seen in the news article below, Lyme is a serious concern here in Ireland as ticks are abundant. A father recently described how his young children were bitten in Killarney National Park, one of the high risk areas in Ireland & the father is calling for warning signs to be erected in National Park areas. http://www.killarneytoday.com/father-wants-alert-signs-erected-in-national-park

As indicated by this recent news article ticks are becoming an increasing worry in Killarney: http://www.killarneytoday.com/ticks-in-the-park-could-run-to-billions/

This recent scare among juvenile rowers shows that anyone young or old can be affected: http://www.killarneytoday.com/juvenile-rowers-being-treated-for-lyme-disease/

A Tick Talk Ireland volunteer was successful in getting a warning sign put up at Killarney Children’s Playground, however it has been a struggle to get notices placed in National Parks. The dept of the Environment in communication with them said it was the role of the Health Protection & Surveillance Centre (HPSC), meanwhile the HPSC have designed leaflets & posters to warn the public but indicated they are intended for online use only with no plans to print them.

Sadly this means folks visiting high risk areas are just not being warned sufficiently enough to check themselves during & after walks & to take preventative measures (such as tucking trousers into socks, sticking to footpaths & staying away from grassy areas, applying repellents on the family & pets, plus doing a full body check once reaching home).

Of course, these things would be obvious once you know about the risks of tick bites but not being warned in the first place means folks wouldn’t even think to protect themselves.

Meanwhile, Lyme sufferer Nicola Lavin in this TV interview explains just how devastating a missed diagnosis can be (Pls note this clip may only be available for up to a month): //www.tv3.ie/3player/show/800/113009/1/Sunday%20AM

 

Killarney Risk Map

Valerie Heffernan, during her MSc at University College Cork did a thesis entitled “The application of spatial analytical approaches to determine Lyme disease areas.”

As part of this she put together an excellent map of high risk areas in Killarney National Park  (PDF).

Valerie says ‘The tick habitats were detected using satellite imagery, recorded on the 19th of April 2015, the 11th of July 2013 and the 7th of September 2014 which were acquired from the Landsat 8 (OLI) sensor. These images produced a clear overview of vegetation density in the National Park during the spring, summer and autumn months. This was followed by analysing water polygons, soil type, height data and geology within the Killarney National Park boundary. Buffers were created around the water polygons and merged with coniferous and mixed forest classes to indicate mammal habitats and therefore the high, medium and low risk areas of contracting Lyme disease.’

Valerie says ‘I decided to do a map on this topic after my sister in law became ill with the disease when visiting Connecticut, USA. I feel that the best way to prevent contracting the disease is through information. I was surprised to find there were no other Lyme disease risk area maps in Ireland and decided to create my own using satellite imagery and image processing of the National Park. I hope that the information I have provided can help reduce further cases of the disease.’

It’s worth mentioning though that ticks travel far & wide (their little legs don’t take them far but they do hitch rides on deer, humans, farm animals, domestic animals & birds so they can be found far & wide across Ireland) – hot spots can occur in regions where there is a large influx of wild animals, domestic animals, humans & birds in one place (ie national & recreational parks).

To see other areas that are affected check out our Tick Talking While You’re walking Survey (this doesn’t indicate whether the ticks are actually infected, but does show where they are being regularly spotted & the times of year they are most often reported)..

 

Official Figures way off??

Meanwhile, back in May 2016, the HPSC published the latest notifiable Lyme ‘neuroborreliosis’ cases:

http://ndsc.newsweaver.ie/epiinsight/9qt4y4e21y2?a=1&p=50218569&t=17517774

As you can see, the numbers are quite small. It’s quite difficult to pin down accurate figures in Ireland, this can be due to the following reasons:

A. the doctor is not familiar with the presenting signs at various stages of the disease & therefore Lyme may not even be considered
B. the patient has early Lyme which may have been treated quickly to prevent neurological Lyme but they are still a case & should be recorded (notifiable status curently ONLY records neurological cases)
C. a patient’s main presentation may not necessarily be neurological
D. the criteria for official notification of cases (pg 55 PDF) require 2 tier testing methodologies, which has been problematic for some as sero-conversion can be incomplete (see our article on Issues Surrounding Testing PDF for more details)
E. some patients who don’t emit enough antibodies may have more success using T cell (antigen type testing) from overseas, however these cases may not be counted, as they are outside the 2 tier (antibody) test system
F. clinically diagnosed cases (where tests are negative but suspicions still high based on history of tick bites, history of bulls-eye rashes etc) are also not recorded
G. there is a concern over whether the current secondary test (Western Blot/Immunoblot) which is offered in Porton Down England is excluding tests for borrelia garinii, which is the strain most associated with neuro borreliosis (there are cross over of symptoms between other strains but this is the one most often linked with neuro Lyme).

 

Considerable Underestimate says HPSC

In this article the HPSC say ’50 cases per annum would be a considerable underestimate’. 

I do hope that improvements in testing would help us track cases much more efficiently & better still, why not record all stages of the disease, not just the more disseminated neuro cases?

Please note that Lyme is progressive, however some can develop symptoms slowly & some much more quickly. This may depend on strain, state of immune health, number of co-committing infections & so on. The difference in presentation can therefore lead to confusion when seeking a diagnosis as a doctor may remember one case & see a completely different set of symptoms in another!

 

A look at Irish Studies

To see Irish related studies check out the following:

Does Lyme Exist in Ireland (Tick Talk article PDF)
Irish Scientific Studies (abstracts & links)

A few years ago University of Galway published a Lyme map of cases in the West of Ireland. They showed clusters of cases particularly around the Galway region & Connemara. It would be really good to see more studies taking place, some looking at infection rates in ticks & others looking at infection rate in humans (sadly since Prof Gray retired from Univ College Dublin we simply haven’t had any up to date studies – a prior study in Killarney for instance showed tick infection rates from 11-29%, just where we are now in Killarney & indeed nationally is anyone’s guess.)

 

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2013 in review

The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 20,000 times in 2013. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

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Attached is a word document download for anyone interested in learning about lyme disease. It contains a clickable contents list to allow you to hop to the topic of choice whether it be the history of lyme disease, structure of the lyme bacteria or symptoms & standards of care. Help for newcomers.

looking glass

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Turn the Corner is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases.

2011 Grants and Initiatives


Turn the Corner awards a grant to the International Lyme and Associated Diseases Society (ILADS) for the world renowned Physicians Training Program (PTP) (also available to European doctors willing to travel to the States for shadow training).

Founded and exclusively funded by TTC, the PTP continues to foster excellence in care for Lyme disease and tick-borne disease patients by providing medical practitioners the opportunity to study with Lyme-literate healthcare professionals.

Over 100 medical practioners have been trained and thousands of patients have been properly diagnosed and properly treated thanks to our groundbreaking signature program.

Read More About the Physicians Training Program.

* Turn the Corner awards a grant to Eva Sapi, Ph.D., University of New Haven. Since 2008, Turn the Corner has supported the research of Dr. Sapi. Dr. Sapi and her students at the University of New Haven have been studying the role of biofilms and nematodes in Borrelia burgdorferi, the bacterial agent of Lyme disease. Dr. Sapi has confirmed that the Borrelia bacteria is capable of hiding within a complex covering called biofilm, which increases its resistance to antibiotic treatment. Currently she is testing which agents will ensure that Borrelia cannot hide in biofilm during and after therapy. Dr. Sapi strongly believes this research will be vital to treating patients with chronic Lyme disease. Read a recent article about Dr. Sapi’s research.

* Turn the Corner is pleased to offer a video tape of the 2010 Lyme Disease Symposium “The Challenges of Lyme Disease: Emerging Research and Pediatric Care” hosted by Dr. Sapi at the University of New Haven.

* Turn the Corner awards a grant to M. Karen Newell, Ph.D., Texas A & M University Since 2009, Turn the Corner has supported Dr. Newell’s ground-breaking research project that has implications for improving quality of life for Lyme patients in the future. This study examines the genetics of chronic inflammation, which is a characteristic of every stage of Lyme disease. Using targeted peptides aimed at those that have the particular “immune response” genes associated with disease, Dr. Newell will attempt to reduce the inflammation caused by the Borrelia bacteria.

For details of previous grants honoured by Turn the Corner go to: http://www.turnthecorner.org/content/get-involved-0

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Funny things they said

Funny things they said..

But not so funny at the time!

Having Lyme disease is a testing illness. Testing for the doctor – let’s face it, they only have 10 minutes or less to be able to work out what’s wrong with a patient who seemingly has every symptom imaginable!

Testing for the patient too – imagine suffering at home, day in, day out. Not being able to hold down a job. Not being believed by the family. Feeling dreadful and not understanding where all this pain and fatigue is coming from and why the body is unable to get better despite rest and ‘sensible’ eating. So a trip to the doctor it is, waiting in a waiting room for what seems like hours, sometimes passed around from consultant to consultant, only to be ridiculed & made to feel worse at the end of the day!

I do fully believe that both patients and doctors can make things better with a bit of humour & here I’d like to portray some of the humourous things that have been said to Lyme patients around the world. Bear in mind, that at the time, these were NOT humourous at all and certainly didn’t help the patient feel any better.


Here are just a few comments heard by Lyme patients in a doctor or hospital setting:


A patient in Ireland was told “there is no Lyme in Ireland” leaving her to develop chronic Lyme from an untreated early stage infection (complete with bulls-eye rash).

A young lady was told her Lyme symptoms were because she was “just a mom, getting older, part of the aging process” (at age 32!)

“You don’t have neurological symptoms” – a neurologist said to a patient with numbness, tingling, tremours & hyperreflexia!

A mum reported to me that her son was terribly ill from several infections tick-borne infections including Lyme, Babesia and Bartonella. He was told -“You are perfectly healthy; you could just stand to lose a little weight!”

A patient hobbled painfully into the surgery the GP said “Of course you can walk perfectly well; you walked in here didn’t you?”; the patient recalls “we argued for a while, then I got up to leave and for the first time ever fell flat on my face. The GP walked out and left me there scrabbling around in shock on the floor”.

And another one – “Go home and get plenty rest. These things rarely last more than 12 months”. The patient was already ill for four years!

A lady was told she can’t possibly have chronic Lyme disease so “It must be Lupus”.

A military doctor told a Lyme sufferer “You’re not sick, you’re bored”.

Another patient explains: “In the past month I have been accused by Dr’s of the following: Having HIV instead of Lyme because I’m gay, that I’m trying to not work because I can’t get along with my coworkers (who I LOVE), that I have a history of mental illness because I was treated for Seasonal Affective Disorder, that nothing is wrong it’s all caused by my addiction to medication, and finally that it’s “all in my head”.”

A friend of mine was told by a doctor “stop wasting my time”. Sadly when a patient is STILL ill they will return to the doctor only to be met with utter annoyance!

A patient after receiving tests in a hospital was told – ”’The good news is your blood tests are all normal. So why are you in that wheelchair?”

A patient with neuroborreliosis had an MRI showing 2 lesions on the brain. The Neurologist said “It’s definitely not MS, I’m sorry I really don’t know what it is, I think you should try doing some Yoga”!!!

Another patient was refused a thyroid test by a GP despite the patient (who was a nurse) request. Six months later she was in hospital for two weeks with a diagnosis: Hashimoto’s Hypothyroidism.

A lady with a bad back was told to lose weight, when she went back in still complaining of pain she was told it was because she had lost too much!

Another sufferer was told “You don’t have a thyroid problem, so clearly you should just watch what you eat a bit better…after all, you are middle aged” to a patient who had swelled up the size of three new born babies, in about 4 weeks!

How about “You can’t get lyme disease in Bolton (Lancashire, UK)” from a occupational health doctor to whom “travel” was an alien concept – which was strange considering the fact that he was a Scot working in Lancashire.

And finally – a dentist to an ME patient (which later turned out to be stage 3 Lyme) – “Well we all have a blip now and again”.

For some more patient stories and doctors comments why not check out PJ Langhoff’s great book “It’s All in Your Head” Around the world in 80 Lyme Patient Stories?

Published by Allegory Press, the stories span many continents around the world and are but a mere selection of hundreds of patient’s stories she received while publishing her book. A Lyme sufferer herself, PJ I has written several other titles, including the following:

(Some of these titles are available in E-book format).

It’s All in Your Head Part I
It’s All in Your Head Part II
Baker’s Dozen & the Lunatic Fringe
God Science – New release Feb 2011

God Science - new book by PJ Langoff


Jordan and the Naughty Camels – children’s story & colouring book
The Singing Forest, a Journey Through Lyme Disease
Right Behind You, Spiritual Helpers from Beyond the Earth Plane

For ordering details go to: http://www.allegorypress.com/books.html

I finish this blog with a plea for help: There is an urgent call for family and friends to consider donating their bone marrow (sadly Lyme patients cannot apply). More details as follows:

Please Help Give the Gift of Life to Jordan Jemsek

Jordan needs urgent tretament to save her life

Jordan is just 6 years old and has been fighting Acute Myeloid Leukemia for the past year and a half. She is in need of a bone marrow transplant and there are no matching donors in the national registry. Her father is a leading physician for patients with Lyme disease and HIV/AIDS.

NASCAR’s Bobby Labonte and his team members from JTG Daughterty Racing came all the way down to Charlotte, NC to Presbyterian Hemby Hospital just to visit Jordan and to lift her spirits, even though they have an upcoming race! They also put Jordan’s photograph on the back of their 47 car…….along with a web site address to help raise awareness for Jordan’s plight.

Here is a video of their visit from last Monday, shown on Speed TV.

There will be a bone marrow donor drive March 5, 2011 in Charlotte, NC at St. Gabriel’s Church. The family is scottish/irish/ukranian for the best match, although every one who donates can potentially save a life. A pain-free cheek swab is all it takes to find out if you are a match for Jordan. The kits can be sent free with registration at www.marrow.org

To find out if you are a match for Jordan and others like her, please consider taking a simple cheek swab test today.

You can give the gift of life!

For more details hop to Allegory Press or why not check out PJ’s book “Jordan & the Naughty Camel’ written especially for children with difficult illnesses like cancers and leukemias.

Jordan & the Naughty Camel

Proceeds of the book sales go to Presbyterian Hemby Children’s Hospital in Charlotte, NC.

Thank you!

Donors in UK & Ireland will need to approach their local organisation. However, these organisations are linked around the world so a perfect match may still make it’s way to help this very brave little girl. Please spread the word!

England, Wales, Scotland & Northern Ireland
Irish blood transfusion bone marrow registry

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Lyme Venue Germany May 27-28 2011

Basic Lyme and Co-Infections: An Introduction to Testing
& Treatment of Tick Borne Disease For Medical Professionals

Registration and Payment

DEADLINE FOR REDUCED REGISTRATION FEE: FRIDAY, 1st April 2011

The registration fee includes access to all scientific sessions, conference materials, simultaneous translation (English to German), lunch, tea and coffee.

How to Register

Delegates can register online for the conference, using a secure credit or debit card through paypal. To register, please scroll down to the bottom of this informational page.

Registration Fee

Registration Fee 1st Day:

Registration Fee until 1st April 2011:
ILADS-Member: € 70 EUR
Non-Member: € 80 EUR

Registration Fee after 1st April 2011: € 90 EUR

Registration Fee 2nd Day:

Registration Fee until 1st April 2011:
ILADS-Member: € 110 EUR
Non-Member: € 140 EUR

Registration Fee after 1st April 2011: € 160 EUR

Registration Fee for both Conference Days:

Registration Fee until 1st April 2011:
Member: € 180
Non-Member: € 210

Registration Fee after 1st April 2011: € 240

Tickets at the Door:

Day 1: € 100 EUR
Day 2: € 170 EUR
Day 1 & 2: € 250 EUR

Registration Fees for Patients, Support Group Members and Students:

Day 1: € 50 EUR
Day 2: € 60 EUR
Day 1 & 2: € 100 EUR

Registration Payment Information

This conference is being organized by ILADS members Dr. Carsten Nicolaus and Dr. Armin Schwarzbach on behalf of the International Lyme and Associated Diseases Society. Credit card payments can be made through Paypal. We regret that we are unable take credit card payments by telephone at this time.

Confirmation

After registration and receipt of payment delegates will be sent an email confirmation, which should be printed out and brought to the conference registration.

Registration Cancellation & Refunds

50% refund given when cancelled until 13th May, 2011. No refund can be given after 13th May, 2011.

Accreditation

This is a CME (Continuing Medical Education) accredited conference and you will receive CME points from the Bavarian Medical Association in Munich. All participants will be issues certificates of attendance after each conference day.

Objective

To give physicians with clinical practice the basic tools to diagnose and treat Lyme disease and associated diseases.

Venue

Annahof Augsburg – Augustana Saal
annaEVENT GmbH
Im Annahof 4
86150 Augsburg
Germany

Venue website

The conference venue is located only a short distance from the main conference hotels (ca. 3 – 15 Minutes).

Commercial Interests

If you are interested in exhibiting at the conference, or renting a stand, please contact Lymedocs@aol.com.

There will be limited availability for commercial representation. Approximately 8 tables will be available for rent on both days. Cost € 1,000 EUR for both days.

Eligibility

This is an ILADS educational meeting aimed at physicians. There are ca. 50 spaces available for support group members and patients interested in the conference.

Augsburg Lyme Disease Conference Pay Online

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Sponsor Run in Aid of Simon Millington who passed away after a long struggle with Lyme Disease.

National Air Traffic Services (NATS) to take part in the Great South Run on 24th October 2010

The NATS team decision to run the Great South Run for BADA-UK came about when a colleague and very close friend contracted Lyme disease and tragically passed away in February 2010. After learning about the work of the charity, they have pledged to complete this event to raise funds and awareness for BADA-UK.

Simon Millington 1962 – 2010

Simon sadly died after an intolerable struggle with Lyme disease. He was a very talented man whose loss is a dreadful tragedy to his family, friends, colleagues and neighbours. Simon will especially be remembered for his daring and adventurous exploits, which could be breathtaking. He once skied from the Piz Gloria restaurant, Schilthorn, in Switzerland (which is where the James Bond movie, “On Her Majesty’s Secret Service” was set), carrying a souvenir tray! Although he will be remembered with sadness, he will also leave those who knew and loved him with some wonderful memories.

You can sponsor National Air Traffic Services Team (NATS) online by donating securely through Just Giving, Via Paypal or through Charities Aid Foundation. You can also mail a cheque to BADA-UK if preferred.

Go to BADA’s website to complete your donations & pass along to family & friends:

With best wishes, Tick Talk Ireland

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