Latest Survey Results Published for Ireland

Tick Talking While You’re Walking – Tick Survey Ireland

http://www.surveymonkey.com/s/VRFCD8T

Since May 30 2011 we’ve been asking members of the republic to report on any ticks spotted here in Ireland. As of Dec 31, 2011 a total of 52 people have responded so far.

Results can be downloaded here:

Text results
Chart Results

Here are some of the interesting snippets from our survey:

County of residence of our respondents was as follows:

The majority of our responders (60%) reside in the West of Ireland, followed by 19% in the East, 10% in the Northern/Border counties & 4% in the midlands. 8% of responders though did not specify.

How many ticks were spotted on each occasion?

The majority of our responses (56%) spotted 1 or 2 ticks, 10% reported 3-5, 12% found 6-10 ticks, 6% found 11-20, 4% found 21-40 & a further 13% said they spotted ‘numerous’ ticks on each occasion.

As many types of animal can carry ticks including birds, mice, squirrels, hedgehogs, pets, farm animals as well deer this can increase the number of ticks being carried around on hosts. Smaller birds & mammals are ideal for the smaller nymph ticks, whereas adult ticks would target the larger group of animals. Female ticks can lay 2,000 eggs resulting in large numbers being found in one area. Humans become accidental hosts when the ticks look for a blood meal or can become infected when a pet carries a tick into the house.

Which month were ticks typically found?

The months of June/July were reportedly the most common with 38% of ticks spotted in June & 29% July. 13% of responders indicated they saw ticks throughout all of Spring & Summer.

It is important to note that children’s summer holidays falls at the same time ticks are most active therefore good prevention measures are needed both in the garden & whilst out playing or walking. Ticks can survive winter conditions if plenty of leaf litter is available on the ground. Very icy temperatures can knock back their numbers; however they are able to survive if there is snow on the ground which can act as an insulating layer.

Ticks prefer damp areas as they can dehydrate rapidly, so would typically be found in forested areas, tall grass that hasn’t been trimmed back during the summer, or autumn/winter leaf litter. Tips such as keeping grass closely cut during the summer, clearing leaf litter & trimming back edges of garden areas should help to prevent ticks coming into your area. Also use DEET on humans & tick repellants on animals before going out walking. Tucking trousers into socks whilst out rambling & regular tick checks can also go a long way to minimize the risk of tick-borne infections. Tick twisters are available on our site as well as tips for correct removal.

Enter the location your tick was found (by county)

67% of ticks were spotted in the West of Ireland, 15% in the East, 12% in Northern/Border Counties, 4% in the Midlands & 2% in Northern Ireland.

The most common area for ticks was an overwhelming 27% in Galway, 13% in Cork, 12% in Kerry, 10% Donegal & 8% in Mayo. The remainder were found (in ascending order); Wicklow, Wexford, Clare, Tipperary, Laois, Waterford, Sligo, Offaly, Kildare & Northern Ireland.

Which type of landscape were ticks found?

52% of ticks were found in tall grasses, 23% in private gardens.

The rest were found in forested & lakeside areas, heath land, national parks & sand dunes. Some reports of ticks were found on farms, public parks & in leaf litter, with some ticks being found in the house carried in by family pets.

What was the activity at the time of the bite/or when ticks were spotted?

50% of ticks were found whilst walking, 17% whilst gardening.

The rest were found whilst camping, farming & hunting. There were some reports of children picking up ticks whilst out playing or some ticks were found on return from brownie or scout meets.

Where was the tick found? (i.e. pet, adult or child?)

54% of ticks were found on adults, 33% on a dog & 21% on children.
Some reported ticks found in pet beds, in carpeting or on the family sofa.

Was the tick attached when found?

92% of people reported that the ticks were attached to the skin when found (ie embedded).

8% reported that the tick was found crawling over the skin (but NOT embedded).

46% 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 causing (borrelia) bacteria.

How was the tick removed?

46% of people used fingernails to remove the tick, 34% used tweezers, 4% use tick twisters, 2% asked a GP or nurse to help remove the tick & 2% asked a vet for assistance..

The remainder used Vaseline or nail varnish to remove the embedded tick. A cotton thread was also used which is handy tip if tweezers or a tick twister is unavailable. Loop the cotton thread around the head of the tick close to the skin & pull upwards slowly, making sure to remove the head cleanly.

NB: For correct tick removal please go to http://ticktalkireland.org/ Incorrect removal can increase your chance of infection

Please find below a few places that were mentioned in our tick survey:

In Donegal a resident found approx 10 ticks throughout the months of May, June & July. Ticks were found on 2 adults & pets as well as being brought into the house
40 ticks were reported as being spotted in Ards Forest Park, Donegal during the month of July
A child was bitten by a tick in Country Donegal after a day out on the beach & countryside. The tick was engorged when found in June
A tick was found on a child after visiting a national park in Armagh in May
8 ticks were found on an adult & a dog whilst gardening in Sligo (June 2011)
A dog walker has reported more than 20 ticks found whilst out walking in Ofally, during the months of May & June
2 or more ticks have been seen every month in a garden in County Laois (2010/2011)
3 were found in Waterford whilst out gardening (July 2011)
A tick was found on a child after visiting Bray Head in County Wicklow in June
One walker reported ‘lots’ of ticks spotted whilst walking in Mayo in July, some ticks were found attached to the skin
Numerous ticks were found in a forested area in Ballinrobe area, Co. Mayo during the months of June & July
A group of 21 travelling in the Burren area & Aran Islands reported spotting 4 ticks (July 2011)
10 ticks were found on a sheep farm in Tipperary (June)
A child on a farm in County Clare had an engorged tick (June)
More than 15 ticks were found on a dog after exploring land in County Cork (Feb 2011)
A resident in County Cork has found ticks many times in the garden throughout 2000-2011 & have been bitten on several occasions
30 ticks were found whilst camping in Killarney, Co. Kerry. Some ticks were engorged when found (June 2011), 2 more were reported in Killarney in Oct 2010
A 4 year old child was bitten by a tick in County Kerry whilst out playing in June
A walker & pet owner reported several ticks found in Ross Island & Killarney National Park, Co. Kerry during the months of May to August 2011. Some ticks were attached when found
A walker found numerous ticks in Waterville, Kerry during the summer months among ferns in a mountainous area
Another child was affected whilst playing in a garden in Galway (June)
Several ticks have been found in County Galway whilst gardening at various times through the year
A resident in West of Galway is reporting 2 or 3 ticks found weekly whilst walking their dog since April 2011
A walker found 12 ticks on themselves & their family pet after a trip to Portumna Forest (Co. Galway) in July
Inisheer (Aran Islands) Galway: 10 ticks spotted whilst out camping (July 2011)
Another 6 were found by a resident whilst walking in gardens in West Galway in June & another reported more than 10 ticks found in humans, pets & in the house in Galway in May

Vet Study

http://www.surveymonkey.com/s/L395BSB

In the summer of 2011 we asked vets to report on how many ticks were seen on companion & farm animals in Ireland. We received only 7 responses; however a summary is available as follows:

How many ticks were found on each occasion?

57% found between 1-2 ticks
29% found between 3-10 ticks
14% found between 21-30 ticks

What type of animal were ticks found (including pets as well as farm animals)?

86% ticks were found on dogs, the remainder on a cat & cattle

What was the reason for the vet visit at the time?

57% of pets were brought in for routine vaccinations when the ticks were reported
29% of owners had bought the animal in for tick removal
14% animals brought in during ill health

If ill-health, which tick-borne illness did you suspect?

The vet suspected louping ill / babesiosis & ehrlichiosis, this was not confirmed by testing however at the time of the survey

In Summary
The survey identifies that vets & the general public are spotting many ticks at one time, for instance 56% our public responders spotted 1-2 ticks, with the rest spotting many more. Similarly, 57% of our vet respondents spotted 1-2 ticks on each occasion, whilst the remainder spotted more.

It is important to note from both the general public & vet studies that dogs are a greater risk for bringing ticks into close vicinity to humans. They like to brush past tall grasses & ticks can be easily latched in their fur. Although there are some great tick repellants products available, they are designed to repel not actually kill the ticks & some are less effective than others at deterring them, therefore extra vigilance is required when walking your pet in the countryside. If a tick does latch onto the dog it may be brought into your home & land on bedding, furniture or feed on the dog & drop off into the garden – an added danger when an adult tick is ready to lay its eggs. Routine tick checks will help to minimize the risk of tick-borne infections being passed onto you or your dog. Signs of Lyme infection in pets can include lameness & fatigue. For details on how to protect your family from tick-borne infections, check out our downloadable leaflet or feel free to contact us for a bulk order of leaflets for your local vet, library, hospital, church, walking or sports club. The HSE also has tips on how to best protect the family from Lyme Disease. The true incidence of Lyme Disease is currently unknown in Ireland; from September 2011 it has now been classed as a notifiable disease which will be helpful in tracking suspected numbers across Ireland.

We have published some recent figures from our Lyme in Ireland survey (see below) showing how the illness can affect patients & the problems they face with regards to testing & treatment.

Lyme Disease in Ireland – Survey

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

In 2009, Tick Talk Ireland produced a survey to Irish sufferers.

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

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

27 people replied to the survey during the months of July and August 2009:-
59 people replied to the survey from July 2009 to December 2011:-

Results can be downloaded here:

Text results
Chart results

All our surveys are still ongoing, updates will follow periodically!

Tick Talk Ireland, Charity 19588: web: www.ticktalkireland.org

2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 9,200 times in 2011. If it were a concert at Sydney Opera House, it would take about 3 sold-out performances for that many people to see it.

Click here to see the complete report.

Tick Talk News Announcement!

Tick Talk Ireland is rounding up our first year end as a charity & wow what a year.

So what have we done so far?

*Set up a new website with Tick Talk URL
*Designed & printed leaflets & distributed to national parks, hospitals, vets, libraries, health centres & chemists
*Printed business cards & Tick Talk postcards for leaving in banks, handing to doctors, mailing with twisters etc.
*Purchased tick twisters for resale
*Purchased merchandise including find a cure bangles, where there is love & Lyme survivor bracelets, computer bugs & awareness ribbons.
Merchandise will help to create awareness & subsequently generate more funds to help us raise more awareness!
*Held our first fundraising & awareness event complete with Lyme presentation, sponsored walk, music night & raffle
*Tick Talk member persuades Killarney county council to place warning signs by a children’s play area
*Wrote articles for children’s websites, appeared on RTE television & some Tick Talk members helped with newspaper & radio interviews
*Sent ILADS psychiatric Lyme brochure to psychiatric clinics across Ireland
*Designed & posted symptoms chart to help patients track their symptoms
*Continued to write Luna tick stories (If Ticks Could Talk!)
*Published an FAQ & what to do if you suspect Lyme
*Questions & answers session with the Deer Alliance & collection of ticks brought in for analysis (these were sent off to Germany for PCR testing)
*Completed a tick sweep in Portumna Forest, Galway & mailed to Germany for testing
*Fundraising event via a Dart Tournament in Wicklow
*Tick Talk & its members encouraged Lyme to be made notifiable to help track possible, probable & proven cases (Lyme has been added to the notifiable illnesses list as of September 2011)
*Wrote to the European Parliament to encourage better testing & monitoring of Lyme disease cases throughout the EU
*Followed up with all county councils to ensure they included links to the HPSC Lyme leaflets on their site, as promised by the HSE (the majority have now complied)
*Surveys Two new surveys created on ticks in Ireland plus vet’s study
*Release of a UK & Ireland patient survey, in collaboration with Lyme Research UK & Ireland (see note below)

NB: As a reminder the survey through Lyme Research UK & Ireland is due to close soon. For more information go to: http://ticktalkireland.wordpress.com/2011/10/17/surveys-sweeps/

Plans for next year include:

*Our very first Lyme conference attracting speakers from US & Europe (more details to follow)
*More tick sweeps & tick testing in various locations in Ireland – volunteers needed!
*Much wider distribution of leaflets across Ireland – more volunteers needed!
*Analysis & publication of survey results
*Meeting with the HPSC regarding survey results & discuss warning notices to the general public
*Design, print & distribute awareness posters for health clinics & schools
*Continue to update our website, blog, twitter & facebook page with new & exciting research studies
*Lyme awareness presentations in local areas
*Encourage doctors to consider the ILADS physician training program (Tick Talk may be able to contribute towards flights – a stipend is payable during the program)
*Plan new fundraising & awareness events, to be announced in the New year
*Finish & publish Luna the Tick (If Ticks Could Talk!)

Ways you can help!

*If you have some spare time & can help us distribute leaflets let us know at info AT ticktalkireland.org
*Interested in doing a fundraising event in your area? Let us know & we can send material to help you such as posters, leaflets, presentation disk etc. We also have available a version of Under Our Skin with public viewing rights – if your local sports, walker’s club etc. would be interested let us know!
*Do you have sporty & daring relatives? Maybe they’d like to help out with sky diving or marathon running. A great way to raise awareness & funds at the same time!
*Check out our merchandise page, all profits from sales go directly to Tick Talk
*Alternatively donate to us at: http://ticktalkireland.wordpress.com/donate/
*If you’re a doctor & would like to be regularly informed of new research on Lyme feel free to contact us.

Stop Press!

Lyme disease has now been made a notifiable illness!

We have recently received confirmation from the Department of Health that as from September 2011, Lyme disease has been made a notifiable illness here in Ireland. We had been campaigning for a number of years to achieve this status as recognition of the seriousness of the disease. My thanks to everyone in the health service who have helped to encourage this move forward.

We feel that tracking of case numbers may be enhanced, as clinical diagnosis could also be considered as well as serologically confirmed cases.

It is important to note that not all cases are picked up serologically,. For instance the test kit manufacturers Trinity Biotech say that early Lyme cases & some late manifestations of Lyme may continue to be negative. In their own words, ‘Lyme testing both 1st & 2nd tier should not be used to RULE OUT a diagnosis’. This is especially important where early antimicrobial intervention has been given as this may affect the antibody response. This is why clinically diagnosed cases can show a much sounder reflection of cases..

On a different note, a new book has been released by founding member of the IDSA (Infectious Disease Society of America) Dr Burton Waisbren entitled:

Treatment of Chronic Lyme Disease: Fifty-One Case Reports and Essays

This book is available through amazon in paperback edition or kindle.

For sample chapters please refer to: http://books.google.co.uk/books?hl=en&lr=lang_en&id=GYzwLmRNatUC&oi=fnd&pg=PR15&dq=lyme&ots=6pG66rTkCX&sig=VPSZdONEeGCBgEL5QB5EQyAR8TU#v=onepage&q&f=false

Dr. Waisbren is board certified by the American Board of Internal Medicine and also is a fellow of the American College of Physicians and the Infectious Disease Society of America. He is a founding member of the Infectious Disease Society of America, the American Burn Association, and the Critical Care Society of America.

For more information on his background please go to:
http://waisbrenclinic.com/aboutdr.html

Lastly I’d like to give advance noticed of an upcoming Lyme conference being planned for next year. Speakers will be coming in from USA & Europe & should be a good chance to discuss problems faced by patients & their doctors when it comes to recognising & treating the myriad of Lyme symptoms.

More news to follow in the New Year.

If Ticks Could Talk Part Seven

If Ticks could Talk Part Seven (my name is Luna)
Written by Jenny O’Dea, Ireland © Nov 2011

“I’m Still Standing,
Yeah, Yeah, Yeah!”

My name is Luna & this is part seven of my story. My new host is sopping wet through. We’d both been for a swim, except in my case I hadn’t really planned to be there, I fell in while looking for a new host! My luck turned & a passing animal came into the water to play & now here I am, sitting precariously underneath his soggy collar. Phew, that was a chance visit!

Quite a fast ride this new beast is, with yellowy fur & golden ears. He gallops this way & that, chasing sticks & rushing up to his owner at ferocious speed. I knew that if I didn’t have little hooked legs I’d be a gonna, as I hadn’t yet had chance to stick my mouth parts into his warm, cozy flesh.

My friend Dips said the best way was to wait for the host to be quiet & then crawl around to find a warm spot to feed, ears were a firm favourite. I hid under the collar for now just to hold on; those floppy ears flapping in the wind – ‘yum, my next meal’, I thought to myself. My food of choice is blood, it keeps me alive, helps me to grow into my next life stage & stops me from dehydrating – a three for one deal!

My host took a long time to become tired & I was weary too, with clinging on for dear life. Eventually my new host & his 2 legged friend went into a large box. I would often look over at the large box wondering what it was, maybe this was where the 2 legged people live? ‘Why don’t they live in the trees & grass like we do?’ I thought to myself. Then I realized the answer. Inside was so warm, a crackling noise was coming from one side of the wall & my doggy friend I was clinging onto promptly sat down in front of it. Red & orange flames came out of a wooden pile. The dog settled in for a snooze & I was eager for my work to begin.

Using a cutting tool (hypostome) I began to cut my way into the fleshy ear. It was still a bit wet from our adventure in the pond! As I buried into the flesh I could feel the blood collecting in a nice pool. My anti-coagulant chemicals ensured the blood would keep flowing, so I knew I had all the time in the world. My main task right now was to get settled & anchored in while the host was sleeping.

As I clung on I was able to make a substance to help me glue my head into place & folded back my palps to help me anchor onto the spot. I chose a place under the ear to get more blood & stay safe from anyone seeing me. ‘Right that’s me set’, I thought to myself. ‘Think I need a rest myself.’

I don’t know how long it was but the dog started to stir & get restless. He kept pacing up & down by a shiny bowl. ‘What’s that?’ I thought, ‘it’s empty, why stare into an empty bowl? These animals are so weird!’

So Luna finally gets her just reward. With this feed she can make into adulthood. She knows that her chances of mating, & laying eggs is dependent on her ability to feed.

With each meal she is able to moult & move onto the next life stage. But will she complete her meal or will the dog’s owner find her? Does he have the tweezers ready? Stayed tuned to find out more!

Jenny O’Dea, Ireland © Nov 2011 – if any of this text is used please give credit to the author & blog site!

Surveys & sweeps!

Breaking News – New Survey Released for UK & Ireland

This is a survey by an independent group of researchers, led by Kate Bloor. She is fully registered with the Social Research Association, and this project adheres to their ethical guidelines.

Information about the full purpose of the research and a paper copy can be made available on request.

To sign up to join the on-line survey, please use the link below. I can also send you a copy of the paper version in the post, if you provide an address.If you were part of the ‘pilot’ study please fill in the form again, as it has changed slightly.

Click here to take survey

If there are several people at the same IP address who wish to fill in the form, let me know and I can arrange that. Once the link is used once it becomes inactive so you need to ask for a new link.

You can opt for continued contact about the research on the form. Any personal details sent directly to me, by email will be deleted after the survey is finished (as per ethical guidelines).

Recruiting others

We need to recruit people far and wide, including those who might not be on websites, have been treated and are better, those who were treated quickly etc. However, its important to approach other people in the right way for ethical reasons.

Ask their permission, and then either I can send you a link to pass onto them, or with their permission I can send it directly to them by email.

If you want an example of the kind of research that has been done, please find the link below. You can also sign up for information via social network sites (link below). You can also donate to support this work.

http://ticktalkireland.wordpress.com/2011/02/14/lyme-policy-uk/

Many thanks for your help and interest.
Kate Bloor
Email: lymeresearchuk@btinternet.com

Find Lyme Research UK on

Facebook:
Twitter:
To donate to Lyme Research UK using Paypal, please click here

For more information about this project go to: http://ticktalkireland.wordpress.com/2011/09/06/lyme-research/

New Merchandise available for Christmas:

Check out our awareness ribbons, bracelets, bangles, computer bugs & the all important tick twister.

Special offer running from now until 31st December 2011:

From now until Christmas we are having a special promotion to encourage donations to Tick Talk, if you know of anyone who maybe interested please pass the word

* Donate 10 euro or more & receive a free ‘find a cure’ lyme green bangle.
* Donate 15 euro or more & receive a free pack of 2 tick twisters.
* Donate 25 euro or more & receive both items.

Offer to end 31st December.

Please visit the bottom of our merchandise page for details on how to donate (using paypal). For cheque donations contact us for mailing details. http://ticktalkireland.org/merchandise.html

Details of how we aim to use the funds can be found at: http://ticktalkireland.org/whatwedo.html

We are planning more tick sweeps plus our very first Lyme conference for the new year, more details to follow..

The image above (click to enlarge) shows the results of our very 1st tick sweep in Ireland. More than 15 ticks were readily found in the picnic area of Portumna Forest, County Galway. More sweeps will take place in the following year, we will be looking for infections that the ticks may carry. If you have spotted ticks in Ireland please complete our survey (Tick Talking while You’re Walking) at http://www.ticktalkireland.org/surveys.html

Thank you so much for your support.

Through the Looking Glass

There is a curious undertone going on in the Lyme world. Patients are ill, very often for long periods of time. Diseases going on for long periods of time are generally called ‘chronic’ and yet many scientists & doctors who are tied to the IDSA guidelines INSIST that chronic Lyme doesn’t exist. Instead they like to blame the patient ‘you’ve had adequate treatment, your symptoms must be in your head, go see a psychiatrist’ or they blame it on a ‘syndrome’ by saying, ‘short treatment means a cure therefore you must have Post Lyme Syndrome or Chronic Fatigue Syndrome – (go take a walk & some anti-depressants).

Sadly the patient is left wondering what on earth has happened to science & medical advancement? Why are studies showing persistence in mice & humans constantly being ignored?

Here are some studies (in some cases by the IDSA guidelines authors themselves) showing persistence of infection & / or seronegative Lyme:

Here’s a link to many articles through the ages showing chronic Lyme by year of study

Here’s a look at patents & grants studying chronic Lyme

Plus links to many studies on cyst forms, seronegative Lyme & persistence

For an amazing list of files relating to Long Term Inflammation in Lyme & Defense Mechanisms of Borrelia bacteria (leading to chronic infection) please click here.

So why are we, the patients being left out in the cold?

Why is there so much fear among professionals to acknowledge that we have an under treated illness & are very sick patients. Please take a moment & imagine what it is like for the patient – yes the very patient that doctors seek to help during their training & yet seemingly disregard often quite arrogantly when faced with a chronically ill Lyme patient.

We need to acknowledge that Lyme is here to stay & that patients with sufficient management & care can get on the path to wellness. Do patients want to remain ill? 100% would agree with me that they would rather not!

Let’s work together to bring a cure to the sufferers of Lyme & tick-borne related illnesses & move science into the 21st century.

Finally, let’s spare a thought for the patient…

I am angry

by Lyle from London (with kind permission)

I am angry that the combined forces of the world’s medical and pharmaceutical powers haven’t seen fit to carry out concerted research to establish a test that provides a 100% proof of the existence or non-existence of Borrelia burgdorferi in the human body

I am angry that the same vastly wealthy, knowledgeable and powerful collection of people has done little effective research into finding a drug or treatment that definitively removes borrelia burgdorferi

I am angry that significant numbers of the world’s medical profession do not even know of the existence of Lyme disease, and would not recognise a bulls-eye rash as a definitive diagnosis of Lyme disease, let alone consider Lyme disease as a diagnosis for the multitude of other symptoms it can cause

I am angry that significant numbers of the world’s medical profession adhere to the belief that 2-4 weeks of doxycycline will remove borrelia burgdorferi from the human body despite the massive and continually increasing evidence that this is not true

I am angry that there are doctors in our supposedly enlightened culture who disdain their patients when they express the concern that they may have Lyme disease

I am angry that multitudes of doctors believe that the results from simple tests for the presence of Lyme disease are 100% accurate, despite evidence and statements to the contrary from the organisations carrying out those tests

I am angry at the ignorance of medical practitioners who believe that Lyme disease only exists in limited geographic areas, despite extensive evidence that ticks will attach themselves to any warm blooded creature, including birds who are self-evidently not limited to specific geographic areas

I am angry that my joints are unbelievably painful if challenged by any but the most mundane movements despite nearly three months of intra-muscular penicillin and oral Cefuroxime supported by Allicin, Banderol/Samento in sequence and a mass of supplements

I am angry that there is not a clear path that can be taken by all sufferers from Lyme disease that will clear their symptoms and allow them the lives they used to lead – therefore saving society/insurers/ government the vast and rapidly growing amounts of money required to help alleviate their pain, inability to work, need for support

I am angry that there are people far worse off than me who have struggled for years to return to some semblance of a quality of life and I can do nothing to help

I am angry that my healthy and active life has been taken away from me and the only avenue back is a long, very slow, very expensive and very painful clawing back using drugs and supplements that both I and my doctors hope will work, because none of us really knows for sure what the answer is or what the problem is – we just know that 2-4 weeks of doxycycline is not the answer

I am angry that there are thousands of people out there who cannot afford the same treatment and have to stumble along without the medical help they so sorely need

I am angry that there are people on this earth, let along doctors governing medical organisations, who cannot see the tsunami that is growing around us all and who insist on prosecuting the medical professionals who are trying to help us get well

To those doctors I say the following:

- The current tests for Lyme disease are known to be inconclusive – why are you not urging your profession and academe to focus on research to develop effective testing regimes?

- If Chronic Lyme disease does not exist then please tell me and thousands of other sufferers, what it is that is causing our symptoms – we are not depressed, and we are not imagining them.

- In the absence of conclusive tests – why do so many of your profession blame the patient rather than treating the symptoms?

- Evidence exists that long term antibiotic treatment has been successful in large numbers of cases. Why do you not pursue that path? Why do you attack it when the ‘accepted’ path has not demonstrated success? The ‘accepted’ treatment for ulcers was reduction of stomach acid until Barry Marshall and Robin Warren proved in 2005, by infecting and then treating themselves, that ulcers were caused by helicobacter pylori. Does this not suggest that we could face a similar situation with Lyme disease?

- Why are you wasting even a moment of your lives attacking doctors who are trying to treat us when you could be focusing on helping us, the patients who suffer every day?

Amen….

Public Hearing on Lyme

Recently we published a post about the forward motion of Lyme. This took a look at new legislation on the treatment & diagnosis of Lyme patients in Connecticut & the Commonwealth of Virginia.

Recently a public hearing on Lyme was held in Pennsylvania which allowed sufferers & their doctors to speak out about the true reflection of Lyme. Is it hard to catch & easy to treat like the IDSA guideline authors state, & are the test really infallible?

Dr Harold Smith MD tells of his experience in urgent care medicine with Lyme patients on how often the disease becomes chronic if not treated early or insufficiently (see video link below).

http://www.youtube.com/watch?v=JpPFKp3FXmQ&feature=share

Dr Bransfield, a psychiatrist who often works with Lyme patients testifies below:

Testimony for Public Hearing on Pennsylvania House Bill #272 – Lyme Disease and Related Tick-Borne Disease Education, Prevention (August 2011)

Thank you for the opportunity to testify today. I am the President of the International Lyme and Associated Diseases Society, President of the New Jersey Psychiatric Association, a member of the Board of Trustees of the Medical Society of New Jersey, an Associate Professor at RWJ-UMDNJ Medical School, a researcher and a physician who treats patients with Lyme disease, including many from Pennsylvania. I represent the physicians who have the long term responsibility of treating patient with Lyme and associated diseases. I am in strong support of House Bill #272 and reference is made to my August 22, 2010 letter supporting this legislation last year.

In the 1600s Dr Thomas Wynne, William Penn’s physician and the first speaker for the Pennsylvania Assemblies who was also my ancestor treated a smallpox epidemic threatening the early immigrants to Pennsylvania. Today we have a different epidemic—Lyme disease. The recently released CDC Lyme statistics lists Pennsylvania and New Jersey as the two states with the most reported and confirmed new cases of Lyme disease in 2010 (PA: 3805, NJ: 3712 reported & PA: 3298, NJ: 3320 confirmed). The CDC and others recognize the formally reported cases are a small fraction of the actual cases which, according to the CDC, may be 10X the number of reported cases while the research of Boltri demonstrates the actual number of cases may instead be 40X the number of reported cases which would represent over 150,000 new cases of Lyme disease in Pennsylvania in 2010. Clearly prevention has failed. Some will be effectively treated, however a significant that are not adequately treated will progress into chronic illness resulting is a burden of disability, illness and suffering that could have been prevented by earlier diagnosis and treatment. Four National Institutes of Health (NIH) trials documented the severity of chronic Lyme disease symptoms these patients report. One trial described the pain as severe as post surgery patients and fatigue as disabling as seen in multiple sclerosis.

We in mainstream medicine strongly support any program that promotes advancement of public awareness, physician education, research, more accurate diagnosis and adequacy of treatment. As a psychiatrist I often see the failures of our medical system, the most severe late stage symptoms of Lyme and associated diseases are neuropsychiatric and that is why I became involved with Lyme disease. The psychiatric consequences of inadequately tick-borne diseases include a number of severe and disabling mental illnesses, autism, developmental disabilities, dementia and violent behavior. There are some infectious disease physicians and others in the medical community who have minimal training in psychiatry and do not understand that most mental illness is physical injury that impairs brain functioning and many of the so called ―subjective and non-specific symptoms of Lyme disease are objective with adequate testing and are symptoms of sickness syndrome associated with chronic infection. No one on the IDSA guideline panel was knowledgeable about psychiatry and they inappropriately dismissed patient’s symptoms as the –―“aches and pains of daily living”. Refer to the attached list of over 250 peer reviewed medical journal articles supporting this statement.

The National Institute of Health, the CDC and scientists studying the etiology of disease all recognize a growing body of peer reviewed studies published in mainstream scientific journals that demonstrate many common diseases of unknown origin are in fact the result of the presence of slowly acting infections caused by viruses, bacteria or protozoa. Infections are often a cause of many chronic illnesses. Evidence presented during the legally mandated review of the restrictive Lyme guidelines of the Infectious Diseases Society of America (IDSA) has confirmed the potential for persistent infection with the Lyme spirochete, Borrelia burgdorferi, as well as the complicating role of multiple tick-borne coinfections and failure of short-course antibiotic therapy. In addition evidence was submitted that there are mechanisms of persistent infection that allow parasites to evade the immune system and complex interactions between multiple infections. We need to progress forward in medicine and not be hampered by outdated beliefs.

There are two opposing standards of care regarding Lyme disease which are supported by two opposing views and two opposing sets of guidelines—ILADS and IDSA. ILADS, the International Lyme and Associated Diseases Society, is evidence based and defines Lyme disease in a broader and more comprehensive manner and recognizes the limitations of current testing and the complexity of treatment while the IDSA definition is restrictive and places greater confidence in current testing and short courses of antibiotic treatment and a recent review by Lee and Vielemeyer ―found a relative paucity of good quality evidence behind current IDSA guidelines. We academicians, researchers and clinicians within ILADS and those following our guidelines that bear the responsibility to treat these patients recognize the limitations of current testing the complexity, chronicity and seriousness of these problems. The average physician inappropriately uses the CDC surveillance case definition as diagnostic criteria. The CDC website clearly states ―This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis. The Lyme ELISA has only a 46-56% accuracy rate and the Chair of the recent Virginia Task Force on Lyme Disease and Other Tick-Borne Diseases recently stated: “Doctors here in Virginia are committing malpractice by saying the ELISA test is sufficient. Their report is submitted with my testimony. There are multiple other problems with lab testing that I can expand upon. Evidence based medicine recognizes all treatment decisions are a risk vs. benefit clinical assessment that is made using the best scientific evidence available, clinical judgment and patient considerations. There is evidence some patients clearly benefit from longer courses of antibiotics and inadequate treatment of infectious diseases encourages antibiotic resistance. Although all medical treatments have risks, there is considerable evidence that inadequate treatment has been linked with autism, serious neurological, psychiatric, and other disease and death. Acne is treated for years with some of the same antibiotics used for Lyme disease. What gives distant third parties the right to oppose medically necessary treatments for Lyme disease?

We have a serious problem that cannot be ignored. It is puzzling why there is opposition to a bill that establishes a task force to investigate Lyme disease and other tick borne infections, to develop a program of public and professional education and to allow adequacy of treatment and insurance coverage. An increasing number of physicians are successfully treating patients with chronic Lyme and associated tick-borne disease with treatments that are effective and beneficial – allowing patients to have a better quality of life. As physicians we took an oath to protect our patients from harm. Laws, governmental policy and insurance mandates should complement our oath and not oppose it. Texas recently passed Lyme disease legislation because Senator Harris required 17 months of treatment and the previously restrictive IDSA based regulatory policy only allowed one month. As a senator he was able to circumvent regulations by receiving his antibiotics from 17 different physicians, but the average working person lacks this capability. This issue is best summarized by Dr. Benjamin Rush, signer of the Declaration of Independence and personal physician to George Washington who stated—―Unless we put medical freedom into the Constitution, the time will come when medicine will organize into an undercover dictatorship to restrict the art of healing to one class of men and deny equal privileges to others: The Constitution of this Republic should make a special privilege for medical freedom as well as religious freedom. Although it has been stated politicians should not meddle in medical matters, government has a responsibility to protect basic freedoms including the freedom to access to medically necessary care.

Sincerely,

Robert C Bransfield, MD, DLFAPA

President International Lyme and Associated Diseases Society
President New Jersey Psychiatric Association
Board of Trustees Medical Society of New Jersey
Clinical Associate Professor Robert Wood Johnson UMDNJ Medical School
Associate Director Psychiatry Riverview Medical Center
Chair of Psychiatric Quality Assurance Riverview Medical Center
Board Certified American Psychiatry and Neurology in Psychiatry
Certified in Psychopharmacology by American Society of Clinical Psychopharmacology
Distinguished Life Fellow American Psychiatric Association

What about the UK?

Meanwhile it is very interesting to note that in the UK more shutters are being brought down about openly discussing the inherent problems of testing & adequate treatment. The charity Lyme Disease Action kindly invited a member of the HPA (Health Protection Agency who oversee the Lyme testing) & a speaker refused to join them citing that ‘HPA staff are banned from speaking’ at the Lyme conference. Curious indeed why HPA are unwilling to discuss the need for better education, testing & treatment to improve the lives of Lyme patients. http://www.lymedisease.org/news/lyme_disease_views/hpa.html

The article below published in the Journal of Medicine: Netherlands March 2011 says it all..

The challenge of Lyme disease: tired of the Lyme wars

B.J. Kullberg*, A. Berende, J.W.M. van der Meer
Department of Medicine, Radboud University Nijmegen Medical Centre; and Nijmegen Institute for
Infection, Inflammation, and Immunity (N4i), the Netherlands,

Tired of Lyme Wars (PDF)

Snippet of the text as follows:

Why do doctors do their best to argue that patients consulting us about Lyme disease are overdemanding and should not be taken seriously? Clearly, many patients with aspecific symptoms do not have active Lyme disease, but this does not deny their concerns and their right to ask for a medical expertise. Patients with chronic fatigue and ‘aspecific’ symptoms, such as myalgia, impaired memory or concentration, headaches, or arthralgia, are often perceived as being annoying or overdemanding.

Most likely, doctors feeling insecure and powerless about patients with unexplained physical symptoms tend to blame their patients, especially if they express specific attributions and cognitions. This leads to a strong tendency for circular reasoning, such as that stated by Coumou et al.: persistent infection as a cause of chronic symptoms after ‘adequate treatment’ is highly unlikely. Indeed, if ‘adequate’ signifies that the microorganism has been eradicated and the immune system has come to rest, the problem has been solved, but the issue rather is whether treatment has been ‘adequate’ or not in patients who continue to feel ill. In fact, authors using the term ‘adequate treatment’ suggest to be certain without further study that treatment has been successful and curative in 100% of cases, while actually referring to standard therapy for uncomplicated disease.

Likewise, designating such patients as having ‘post-Lyme disease syndrome’ (PLDS) incorrectly suggests a prior knowledge that the disease has been cured (‘post’ meaning after), before reasonable attempts have been made to rule out relapse or persistent infection. Whereas persistent infection may be highly unlikely in many patients, using deceitful terminology hampers a scientific and evidence-based approach. For this reason, the Dutch CBO 2011 Guidelines Committee has recommended not to use the term PLDS.

Meanwhile I’ll leave you with an article by Dr Cameron

Proof that Chronic Lyme exists:

“The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials. The risk to society of emerging antibiotic-resistant organisms should be weighed against the societal risks associated with failing to treat an emerging population saddled with CLD. The mixed long-term outcome in children could also be examined. Once we accept the evidence that CLD exists, the medical community should be able to find solutions. Medical professionals should be encouraged to examine whether: (1) innovative treatments for early LD might prevent CLD, (2) early diagnosis of CLD might result in better treatment outcomes, and (3) more effective treatment regimens can be developed for CLD patients who have had prolonged illness and an associated poor quality of life.”

http://www.ilads.org/news/lyme_news/73.html

Lyme Research

NEW RESEARCH – LYME DISEASE PATIENTS

Can You Help Us?

Tick Talk Ireland are collaborating with a new group of researcher’s drawn from the lyme community, academia and medicine, called ‘LymeResearchUk and Ireland’.

This team have designed a piece of research, on the experiences of people affected by tick-borne infections in the UK, and Ireland. This work will be the first in-depth work looking at these experiences and issues, that reflect on the policy and practice for Lyme disease in the UK.

We need people to contribute donations, to support this project.

There are several ways of paying;

By cheque (Sterling/ GBP): email lymeresearchuk@btinternet.com for the address details

By paypal account – click on the donate now button:



(Please note: payments in euros will be converted, with a conversion charge, so its best to use GBP)

Anyone who provides a contribution will receive automatically the FULL REPORT of the research, and a summary. They will also be given the opportunity to contribute to further research.

Kate Bloor – project co-ordinator
further enquiries: lymeresearchuk@btinternet.com

Thank you!

Latest News by Tick Talk Ireland (Aug 2011)

Firstly thank you so much for your support which is greatly appreciated. Whether you have been affected by Lyme, FMS, ME, MS or an interested supporter we do thank you all.

Fundraising News:

We would like to give huge thanks to the Old Ship Darts Club, Arklow who raised a generous 1,012 euro during a dart tournament. A cheque was presented to Tick Talk Ireland.

Pictures available of our past events at: http://ticktalkireland.org/pastevents.html

If you’re able to help out with any fundraising event feel free to let us know.

Other ways to help (for those in good health) are marathons, charity sky dives & more. We’re also looking for people willing to show ‘Under Our Skin’ Lyme documentary in their local area. We also have a British & Irish tick & Lyme presentation in PowerPoint available for anyone interested in showing their local group. For more information in ways you can help check out:

http://ticktalkireland.org/charityskydive.html

http://ticktalkireland.org/help.html Or email us at info@ticktalkireland.org

New merchandise just in:

Would you like a ‘find a cure’ bracelet with Lyme ribbon? Or maybe a beaded green bracelet with ribbon & motive (including Where there’s love there’s life or Lyme survivor). If so check out our newly developed merchandise page: http://ticktalkireland.org/merchandise.html

Also available, computer bugs, awareness ribbons & tick twisters. Great to raise awareness, as a gift or to provide extra protection for you, your family & pets.

New articles written by Tick Talk:

Frequently Asked Questions: http://ticktalkireland.org/faq.html

What to do if you suspect Lyme: http://ticktalkireland.org/suspectlyme.html

Protecting your children: http://ticktalkireland.org/protectingkids.html

New surveys:

Tick Talking while you’re walking: http://www.surveymonkey.com/s/VRFCD8T

Vet survey: http://www.surveymonkey.com/s/L395BSB

These surveys are designed to allow vets or members of the public to report when they see ticks, where, & how many so we can undertake some tick sweeps in the future to identify what disease they may carry.

Results of the surveys will be available at the end of tick season & will be posted in our next news bulletin.

New leaflets:

Due to much demand we have recently printed more leaflets, business cards & postcards. If you are able to distribute leaflets in your local area feel free to drop us a line at info@ticktalkireland.org with your address & how many leaflets you would require.

Individual leaflets are available for download at: http://ticktalkireland.org/lymeleaflet.pdf

Most of all, be safe this summer!

Tick Talk Ireland
http://www.ticktalkireland.org
http://ticktalkireland.wordpress.com/info/

Registered Charity: 19588
“Encouraging awareness, prevention & treatment of Lyme Disease (Borreliosis) in Ireland.”

Forward motion in the world of Lyme!

It is always frustrating when things don’t change & history repeats itself over & over. Some recent changes in the US may set the way for fresh new thinking. Currently many Lyme guidelines across the world, including Europe are linked heavily with the IDSA philosophy that Lyme is easy to treat & easy to find in the patient through two tier antibody testing. However, many research studies, patients & their doctors have pointed out that Lyme can in fact be evasive when it comes to testing, the immune system & antibiotic treatment & very persistent in brain, organs & tissue.

For a long time now we have needed far more research, knowledge, education & most importantly adequate treatment for chronically ill patients. Lyme can cause so many complications that there simply is no ‘one size fits all’ treatment package suited to all patients. It heavily depends on length of infection, the patients ability to handle medication, the number of co-infections carried by the tick & the state of the immune system in getting the bacteria under control.

Here below are a couple of new announcements in the States. Let’s hope they pave the way for a better future for Lyme patients here in Europe.

Blumenthal Takes On Ticks

New Haven Independent
by Thomas MacMillan | Jul 18, 2011 2:41 pm

The new bill will aim to develop better diagnostic tools

Blumenthal and two other senators Monday introduced the Lyme and Tick-Borne Disease Prevention, Education, and Research Act, a bill which would target the pernicious Lyme disease, named after the Connecticut town where it was first discovered.

The legislation would provide money for research on the diagnosis and spread of the tick-borne disease. The Ag Station has been involved in such research for years, and could see an increase in funding as a result of the bill.

“I’ve seen firsthand the damage done by Lyme disease,” Blumenthal said. The disease often goes undiagnosed and untreated for years, leaving people with chronic symptoms like headaches and fatigue. There were 30,000 cases of Lyme disease reported nationwide in 2009, but the true number of infected people is probably 10 times that, because it’s so under-reported, Blumenthal said.

The new bill would do several things: establish a tick-borne disease advisory committee through the U.S. secretary of health and human services, direct Health and Human Services to develop better diagnostic tools and collect better information on the prevalence of Lyme disease, and increase public education on Lyme disease.

Virginia Task Force

Commonwealth of Virginia
The Governor’s Task Force on Lyme Disease
FINAL REPORT
Adopted Unanimously on June 30, 2011

A 19 page report was published outlining recommendations made for diagnosis, treatment, public education & prevention, and children. A small snippet is below…

There is no serological test that can “rule out” Lyme disease

A significant proportion of patients with Lyme disease may never develop or observe such a rash

Diagnosis

1. As acknowledged by the CDC, Lyme disease and many related tick-borne illnesses cannot be adequately diagnosed by serology alone in many cases.

2. There is no serological test that can “rule out” Lyme disease.

3. Clinical diagnosis that may be supported by serology remains the proper method for the diagnosis of Lyme and related illnesses.

4. Clinical diagnosis is not limited to the observation of an EM rash. A significant proportion of patients with Lyme disease may never develop or observe such a rash. Moreover, the EM rash can manifest in non-traditional patterns. The medical community needs a more comprehensive set of visual illustrations so that non-traditional patterns may be properly recognized.

5. Many lay witnesses testified that members of Virginia’s medical community inaccurately believed that serology alone can “rule out” Lyme disease.

6. According to lay testimony, there are some members of the Virginia medical community who have refused to consider a diagnosis of Lyme and related illnesses on the ground that “we do not have Lyme in Virginia” or in this “part of Virginia.” Lyme disease is present in all parts of Virginia, endemic in most parts of the state, and emerging throughout the Commonwealth.

7. The testimony that came before the Task Force relayed the highly questionable nature of the ELISA test for early localized disease. We encourage the use of clinical judgment at all stages due to the significant limitations of current serology.

8. We recommend that the VDH reporting form include the disclaimer “The CDC case definition is designed for surveillance purposes only. Clinical judgment should be exercised in assessing patients for Lyme disease as meeting the surveillance case definition is not required for the diagnosis of Lyme disease.”

9. Since ticks often carry multiple pathogens and we received testimony that many Virginians have multiple tick-borne illnesses that may require comprehensive analysis and treatment, the medical community should be educated on the presence of co-infections.

10. Great caution should be taken whenever a black-legged tick is attached and especially if it is engorged. Patient reports about the length of time of attachment can be unreliable as some patients may not have observed the exact moment of attachment. Medical providers should be at their liberty to treat Lyme disease prophylactically in such cases because of the high risk of disease. (Note that single-dose prophylaxis may lower the sensitivity of subsequent serology, as stated by the CDC.) Moreover, it is clear that early treatment is very important to prevent many serious complications of Lyme disease. (more points included in the report…)

There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment

Treatment

1. There is no serological test that can tell a medical provider when a patient has been cured of Lyme disease.

2. A typical criterion that a patient is well is when the symptoms have resolved and the patient feels better.

3. There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.

4. We received substantial testimony from lay witnesses that they had been successfully treated with long-term antibiotics.

5. Expert testimony regarding effectiveness of long-term antibiotics conflicted. We encourage additional studies to evaluate the effectiveness of long-term antibiotics as treatment for Lyme disease.

6. The Department of Health Professions should inform its licensees that the department does not target clinicians for disciplinary action by virtue of their antibiotic choice of management of Lyme disease.

7. Lay witnesses expressed displeasure with the propensity of the medical community to treat persons who were ultimately diagnosed as late stage Lyme disease, to need psychological evaluation or treatment. Lay witnesses testified this was often done in a demeaning fashion and appeared as an excuse for the medical community’s failure to adequately understand the problem of Lyme disease.

8. Lay witnesses stated that long term treatment of Lyme disease is often not covered by their insurance carriers and that they can spend thousands of dollars per month for their treatment plan. The extent to which this is occurring is unknown to the Task Force and the Task Force recommends that this issue be evaluated by the Bureau of Insurance.

New merchandise at Tick Talk Ireland

Good news – Tick Talk Ireland is now stocking awareness ribbons & computer bugs at 2 euros each (click on picture to see larger image)

To order any Tick Talk merchandise including tick twisters, mosey on down to our site at: http://ticktalkireland.org/merchandise.html

RTE Radio Liveline with Joe Duff recently focused on Lyme Disease. If you missed the show click here for more info.

Recently uploaded to our links folder – the German Borreliosis Society Guidelines with suggestions for treatment for all stages of the disease, including late lyme/chronic manifestations.

Our tick survey continues to be a success. Some of the findings will be published in the coming weeks. Click here for a reminder of all our surveys!