Lyme Disease Bill discussion going forward TOMORROW (Oct 22, 2014)

Elizabeth May to testify before Senate Committee regarding Lyme Disease Bill

October 21, 2014
Elizabeth May, Leader of the Green Party of Canada and Member of Parliament for Saanich­Gulf Islands, will testify before the Senate Standing Committee on Social Affairs, Science and Technology tomorrow as the sponsor of Bill C-442, An Act respecting a Federal Framework on Lyme Disease.

Date: Wednesday, October 22, 2014
Time: 4:15 PM (Eastern)
Location: Room 2, Victoria Building, Parliament of Canada

First introduced by Ms. May in 2012, Bill C-442 will establish a framework for collaboration between the federal, provincial and territorial Health Ministers and the medical community, along with patients and experts.

The bill is sponsored by the Hon. Senator Janis Johnson and was drafted in order to create greater awareness and prevention of Lyme disease, to address the challenges of timely diagnosis and treatment, and to push for further research.

Note: Elizabeth May will speak at the Wednesday meeting at approximately 4:15PM ET.  To view her presentation which is being livestream, click on the following link:

http://www.parl.gc.ca/sencommitteebusiness/CommitteeMeetingSchedule.aspx?parl=41&ses=2&Language=E&comm_id=1047

List of Witnesses
Wednesday, Oct 22nd, 4:15PM ET

Elizabeth May, sponsor of the Bill
Dr. William Bowie, Professor of Medicine, Division of Infectious Diseases, Department of Medicine, University of British Columbia (Association of Medical Microbiology and Infectious Diseases Canada)
Dr. Daniel Gregson, President (Association of Medical Microbiology and Infectious Diseases Canada)
Jim Wilson, President and Founder (Canadian Lyme Disease Foundation)

Thursday, Oct 23rd, 10:30AM ET
Robbin Lindsay, Head, Field Studies, Zoonotic Diseases and Special Pathogens Division, National Microbiology Laboratory(Public Health Agency of Canada)
Dr. Marc Ouellette, Scientific Director, Institute of Infection and Immunity, Centre Hospitalier Universitaire de Québec(Canadian Institutes of Health Research)
Steven Sternthal, Director General, Centre for Food-borne, Environmental and Zoonotic Infectious Diseases (Public Health Agency of Canada)

(Original post  http://elizabethmaymp.ca/elizabeth-may-testify-senate-committee-lyme-disease-bill )

CN Tower green for Lyme Disease

Groups in green -- but covered in jackets, scarves and coats against the unseasonal chilly weather at the foot of the CN Tower! That was the scene in the heart of downtown Toronto, Ontario on the evening of May 17, 2014.  We gathered to wait for the promised green lights on the CN Tower, the tallest freestanding structure in the Western Hemisphere.

 Little groups gathered, some greeting others and generally just talking, catching up, making new connections and finding support networks as we waited for darkness.

 Around us were thousands of young people, running around in very scanty outfits, getting ready for a concert in the Rogers Centre (formerly Skydome). We were amazed, and pulled our jackets closer around our shoulders!

 Robin from City TV arrived and took footage of the gathering while we settled in for a group picture. He received an education during the interview, for sure! He left with pictures of the large tick we found on the dog in Whitby last year (see this blog post), a T-shirt from the Brampton LymeWalk, tick cards and brochures from CanLyme to hand around the office. There was a news clip on the 11 o'clock news, with great footage of the Toronto skyline with the green tower standing proud and tall above the buildings and glistening on the water of Lake Ontario.

These collages just try to show the groups of people, the photographers trying to get a good shot (and a chilly bum in the process), Arno chatting to Robin and the scene at the foot of the tower. Hopefully the passers by took notice, and some did stop to talk and ask questions!

Collages created to combine shots -- click on the picture to see a bigger view.

Combination picture of the tower as it got darker can be seen below. Not an easy picture to take, for sure,

but more are coming. This is just a sample to show what happened in Toronto. Many couldn't attend, so the 30 who were there really represent hundreds of people suffering from Lyme Disease, too sick to get out, too weak to get around by themselves, and probably too depressed to even consider joining others.

May the day come, soon, that we all might stand up and get the treatment we deserve to get well again, to reclaim the months and years that were stolen from us because of this treatable, preventable illness, and that there will be research done to give the answers we are still trying to find ourselves.

MAY: Lyme Disease Awareness Month. 

 

 *Green prayer shawl made by good friend Sue.

Green Niagara Falls and CN Tower this weekend

This weekend, May 16 - 18, 2014, will be a big one since more than 50 Lyme Disease Awareness events all over the world will be happening! Here is an interactive map as well as several posts about events happening worldwide (Link will open in a new window CLICK)

Here in Ontario, there will be green lights on the CN Tower on Saturday, May 17. The lights will be visible when it gets dark enough and will stay the whole night apart from the usual red and white lights on the hour, every hour, to honour Canada. Picture below was taken when we attended the green lights at the CN Tower in 2013, trying to get the attention of any media. This year, as usual, media was slow in reporting this event. Only 680 News so far gave some notice about the green lights on these Canadian icons. 

For two blocks of time of 15 minutes each, at 10: 30 pm and 11 pm on Saturday night, there will be green lights on both the American and Canadian falls of Niagara Falls. Picture below was taken when a large group attended - more pictures elsewhere on this blog if you look in the search box. 

IN THE NEWS:  Very interesting article in the little magazine, "Prevention", by Katherine Harmon Courage. The article explains why one man volunteered to have 8 of the blood-sucking ticks attached to his leg, to help with research.  LINK 

CDC Lyme Disease Widget

Third annual Brampton LymeWalk

Hard to believe, but the LymeWalk is over! Once again a success, thanks to friends, volunteers and people trying to give the help and support we Lymies so desperately need.

Some pictures help to tell the story. The T-shirt features our usual Brampton tick and the Lyme green awareness ribbon.

People started arriving from around 9 am, many to register in person because they had a lot of trouble registering on the Running Room website. Tables were set up with information about other Lyme groups, to share and connect. 

Of course the Lyme Mobile was there to be admired, draw attention, be photographed and lead the Walk once we started! Thanks as always to Colony Ford for this wonderful tool to create awareness. 

People gathering around the registration table, buying white T-shirts, making donations for bracelets or green T-shirts and decals for a vehicle or window. 

The help of my patient, supportive husband is invaluable with all these Lyme awareness events!

Various green decorations made their appearance to get the point across! This young girl sported bright green nail polish and partenered that with one of the green silicone bracelets. 

Even the dogs had green ribbons! 

I made earrings out of green silicone bracelets. Green socks, shoelaces and sunglasses featured on several participants. 

Thank you to so many helpers and friends who gave their time! 

The silent auction table had many items, but several were not sold. Kijiji might have to help out here!

Time for pictures before the start of the Walk. 

The Lyme Mobile nosing through to lead the way!

Remember that the CN Tower in Toronto, both Falls in Niagara Falls and the Peace Bridge in Fort Erie will be bathed in green lights for Lyme Disease Awareness on Saturday, May 17th from around 9 p.m. There will be groups of people wearing green at each of these locations to hand out information, make noise, take pictures and to create awareness about this fast spreading disease. 

• View some pictures from 2013, when the CN tower went green and we attended in good spirits, despite the sudden cold! LINK  of some digital pictures and (2) LINK of SLR pictures
• Pictures from 2013 when Niagara Falls went green: LINK 

NOTE: There are T-shirts available if anyone would like to order one to be mailed. There are green shirts from our previous events as well, available for a donation and shipping costs. Most sizes left are L, XL and XXL

Niagara Falls and CN Tower will go GREEN again!

Final confirmation received today --- once again, both Niagara Falls and Toronto's CN Tower will run green lights for Lyme Disease Awareness!

The date for both these lighting events this year will be the same: MAY 17, 2014.
(Arranged by LymeWalkBrampton.ca )

The postcard on the left can be used to advertise and let people know so they can plan to attend one of these lighting sessions, or view on webcams.

Brampton's Lyme Walk will be held for the third year. Registrations and more can be done online. People can register as individuals, as a family group of up to six members, or get a group of ten together and register as a corporate group.
http://LymeWalkBrampton.ca 

T-shirts can be purchased separately, or bring your own from previous events. Wear green!!

The walk in the park is not a difficult one. Usually we start the walk around noon or so, once everyone is there. If someone is too weak to walk, please bring a wheelchair or walker along. It takes only around half an hour to complete the walk but sometimes others walk around the whole park, or complete the circuit more than once. It is very relaxed. The mission is more to bring Lymies, their friends and caregivers together to share stories and build relationships.

Register and ask friends and family to sponsor you, no matter where they are. Tax receipts are issued and all donations are paid over once a month, with a small fee to handle everything. Registrations include a number to pin to clothing and to keep as a souvenir! Bring a picnic and chairs or blankets to enjoy in the park afterwards, meet with family and enjoy everything that is there to see, experience and discover.

BramptonLymeWalk is part of the WorldWide Lyme Disease Awareness effort. 

HAPPENINGS!

Things are really happening! I'm tempted to change the name of this blog to be "Meerkat's Hope" - instead of just a "heap" of information. What do you think?  Especially if you read on about the news below!
The heading can then look like this

GOOD NEWS!!

Quoted from a post by Elizabeth May, MP, about Bill C-442*:

Since tabling the bill for First Reading in June 2012, my office has been inundated with letters of support. Many are from those suffering the effects of Lyme disease.  Many are from Canadians who have travelled to the U.S. to obtain treatment. I have also heard from many Members of Parliament, from all sides of the House, who hope to see it become law.

The bill is also supported by health professionals, such as the College of Family Physicians of Canada. In a letter to me, November 21, 2013, Eric J. Mang, Director, Health Policy and Government Relations, of the College of Family Physicians of Canada wrote:
“The College of Family Physicians of Canada (CFPC) would like to commend you for presenting Bill C-442, National Lyme Disease Strategy.

“The CFPC supports further studying the economic and health impacts of Lyme Disease to ensure that Canadian physicians have the necessary tools and knowledge at their disposal. Guidelines produced as part of the strategy should include the input of family physicians and available to all primary health care providers.”

Bill C-442 will be going to Second Reading debate on Monday, March 3, 2014. I hope all Canadians will read the bill, and ignore efforts to distort its very sensible, scientifically sound approach. With non-partisan, and compassionate support, we can get the bill to committee and consider any changes that meet the concerns of all impacted by what can be a tragic illness.
 (~ My bold and highlighting ~ Marlene)


POSTERS TO SHARE - LYMEWALK May 10, 2014

The popular Brampton LymeWalk (stroll, roll, etc) will be held for the third time this May! And this year, all registrations are online. No matter where you are, you can join in, register, sponsor, donate and take part virtually. Even if you can't leave your bed or your town, join in to show support and solidarity with Lyme Patients everywhere.

The Walk is part of the WorldWide Lyme Awareness effort (or call it Protest if you like).

Here are posters or graphics you can download to share, please. One can be printed upright (portrait) and the other can be printed long / flat / landscape. Or they can be printed back-to back if you wish. Click on the small image to open in a new window, and then save or print from there.

Of course, you can refer anyone to this blog post to get the images themselves.

Thank you to everyone for comments via email or direct notes when stopping by this blog.

See about Bill C-442 and why we need such a bill HERE.

Help create a National Lyme Disease Strategy

On March 4th, 2014, the House of Commons will begin debate on Elizabeth May's Private Members’ Bill C-442, an Act to Create a National Lyme Disease Strategy. 

WE NEED YOUR HELP.

Original document in PDF format: CLICK

Today, Elizabeth May is asking for your help in making a difference in the lives of tens of thousands of Canadians. On March 4th, 2014, the House of Commons will begin debate on my Private Members’ Bill, C-442, an Act to Create a National Lyme Disease Strategy.

Many of you are already too aware of the shortcomings of the Canadian medical system in dealing with Lyme. And while not a panacea, Bill C-442, if passed, would bring together Canada’s Health Ministers, medical professionals, scientists, and the advocates for Canadians with Lyme Disease to work toward common goals: increasing awareness and prevention, ensuring accurate diagnoses, tracking the spread of the disease, and establishing national standards for the care and treatment of Lyme that reflect best practices.

This is not about politics, it is about helping the thousands of Canadian families who have had their lives turned upside down by this terrible disease. We have received strong indications of support from the NDP and the Liberals, and many Conservative Members of Parliament have similarly expressed their willingness to stand behind this important initiative. We are cautiously optimistic that this plan can succeed, but we can’t take anything for granted.

We need you to help make sure that this Bill becomes law. Members of Parliament will be back home in their communities during the week of February 17th and, during this time, we are asking you to meet with your MP to share your story, help educate them about Lyme, and explain to them why Canada urgently needs a National Lyme Disease Strategy. Please go to www.greenparty.ca/lyme-disease to call your MP and schedule a meeting during the February 17th constituency week.

Many of you have already shared your stories with us, and we urge you to continue to do so. Please go to www.greenparty.ca/lyme-disease to write how Lyme has impacted your life of that of your loved ones, and why Canada needs a National Lyme Disease Strategy.

Finally, if you haven’t already, please add your name to the online petition and, if you are able, please print out the paper petition and collect signatures in your community. These petitions will be tabled in the House of Commons, and shared with other Members of Parliament who have indicated their support for Bill C-442.

Thank you for taking action. If you would like more information about Lyme Disease or Bill C-442, please go to www.elizabethmaymp.ca/national-lyme-disease-strategy.

With hope,

Elizabeth May

OTHER DOCUMENTS WITH LYME IN THE NEWS

• The newest STD: Lyme?  Link
• Vancouver Island Hawk spreading Lyme Disease Link  Quote: “Even though this tick doesn’t bite humans, it perpetuates the infection and helps hold it in nature,” Scott said. “It helps build the population or infection in the tick population.” - See more
• Why our bad winter is actually good Link 

LymeWalk 2014

This year's Brampton LymeWalk is already booked and awaiting registrations and donations!

Please mark the date: May 10, 2014 at Chingaucousy Park.

You can register, donate, ask friends to donate or sponsor, create groups or teams - all online.
No matter where you are in the world or in Canada, you can take part while at the same time helping to spread awareness about this debilitating disease. On LymeWalk Day, wear anything green and send your picture to friends, family, our Facebook group or anywhere you have connections to show community and unity with Lymies everywhere.

People have also asked how they can arrange their own LymeWalks elsewhere in Canada. If you set up your own LymeWalk, we can slot you in with the main page, using the same backbone to receive registrations and donations. Contact me (see Contact link above on this blog) and we can set you up.

MAP, INFORMATION and REGISTRATION LINKS: http://www.lymewalkbrampton.ca/

The Faces of Lyme disease need to be seen, to show through sheer numbers how important this issue is. We need doctors to be aware and to do early diagnosis, we need better and more secure testing, we need awareness, and we need protection for doctors and patients alike. Most important: Patients need to be treated in Canada instead of having to spend hundreds of dollars and countless hours to travel to doctors in the USA.

CanLyme donates $304,000 for Lyme Disease research

The Canadian Lyme Disease Foundation, a registered charitable organization, is pleased to announce that it has made a donation of $304,000 to the G Magnotta Foundation for Vector Borne Diseases, Ontario, Canada.

The donation will be used primarily for a human tissue research program being developed in conjunction with the Humber River Hospital, Toronto, Canada.  Research will entail studying tissue and fluid from various patient groups whose symptoms mirror Lyme Disease.

Approximately 2 million Canadians are diagnosed with conditions of unknown origin including multiple sclerosis, Alzheimer's disease, chronic fatigue syndrome/ME, fibromyalgia, Parkinson's disease and other conditions that share symptoms with Lyme Disease. We know that a percentage of these are in fact Lyme Disease, or triggered by Lyme Disease.  This research program will aide in understanding what that percentage is.

Many Canadians have been diagnosed with one of these diseases of unknown origins only to find out later that their illness was Lyme Disease all along. Treatment for Lyme Disease followed, and their quality of life improved greatly, allowing many to get out of wheelchairs, get out of bed, return to work, return to school, and enjoy life again.

As reported by Health Canada in October 2012, current tests used in Canada to test for Lyme Disease are incapable of detecting many of the bacterial strains that causes Lyme Disease. In order to understand the prevalence of the bacterium in the human population, researchers will employ various technologies, including advanced DNA sequencing techniques, microscopy, and serology.

In August 2013, in a press release by the CDC (United States Center for Disease Control), it was indicated that they have been inadvertently under-reporting Lyme Disease for decades; instead of the approximately 30,000 cases reported annually, the real incidence is estimated to be closer to 300,000 cases annually.  Most cases are within a few hundred miles of the Canadian border, suggesting that Canada likewise has a serious, under-recognized problem and the Canadian Lyme Disease Foundation has been emphasizing this for a decade.

This new research program will help give Canadians a better understanding of the impact tick-borne disease is having on the health care system.

The Canadian Lyme Disease Foundation has also now released its venture grant policy for students and researchers.  Grants of up to ten thousand dollars are offered to qualified applicants.

Background: 

The Canadian Lyme Disease Foundation was founded in 2003 by Jim Wilson.  The mission of the foundation is to promote awareness, education, and research into tick borne diseases.

Lyme Disease is a bacterial infection acquired from tick attachments, and is endemic in all provinces of Canada. Migratory birds, like robins, finches, and other passerine birds carry the disease in their blood and transport the ticks, depositing them randomly across the country.

FASTEST GROWING INFECTIOUS DISEASE

Lyme Disease is the fastest growing infectious disease in the Northern Hemisphere.  In August the United States published a press release stating they have been under-reporting cases of Lyme Disease by a factor of ten, putting estimate annual cases at 300,000.  Canada has a similar situation of under-reporting and the cost to our health care system is enormous.

If caught early Lyme Disease can normally be dealt with by a few weeks of antibiotics, but once it becomes disseminated throughout the body treatment is much more difficult and can require long-term antibiotics.  Unfortunately, in Canada, early diagnosis is uncommon in part because doctors are told that the overly emphasized bull's eye rash occurs much more frequently than it does.  Current research suggests that only a small subset of the Lyme bacteria will cause a rash of any kind.

Also posted to Yahoo Finance pages 

A petition, a new Lyme book and a Community event

How did it become November already, and almost halfway through it, at that? I'm sorry for the lack of updates. Things have been really busy, and I've had a few setbacks, health wise, which didn't help. Short-term antibiotics for a raging infection which had me writhing and rocking in pain. BUT --- it is the first one in months, so no complaints! When I told the doctor-on-call that it felt as if I was "sitting on a baby's head" his eyes hopped up on stalks. Poor man. My regular doctor is used to the weird descriptions and just take them in his stride. I'm so grateful to him! And dr. M, if you are reading here, you know how I appreciate your care and concern.

Back to the post. Because of the lack of updates, this post will contain three really important separate issues. I'll try to keep my part short, but please click on the links in the highlighted lines if you want to read more about any of them. Or if you want to drop by on Saturday for a visit, fresh, warm crepes, and more! Each of the links will open in a new page or window so that the blog will remain for you to return to.

1. Petition
2. New book on Lyme disease
3. EXPO with Lyme table

PETITION: Randy Hillier, MPP, Lanark, Frontenac, Lennox-Addington, is putting forward two motions on Lyme disease in the Ontario Legislature this coming Friday, November 15th, 2013. He would like to have 2500 signatures by Friday, and at this point there are about 200 still needed.

SIGN THE PETITION: Link 

2. Book: Why Can't I Get Better? - by Dr. Richard Horowitz

From the Marketing Manager: "In his new book, Dr. Horowitz, a board-certified MD specializing in Internal Medicine, has mapped out a 16-point Differential Diagnostic Map to treat patients with Lyme disease, and those suffering from overall chronic illnesses.  He introduces MSIDS, or Multi-Systemic Infectious Disease Syndrome, which provides a new lens on chronic illnesses that may prove to be the missing link in an effort to decrease the number of Lyme cases, and chronic illness sufferers, in the US.  And, he covers in detail Lyme’s leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders."
ISBN: 978-1-250-01940-0, $29.99 US.

My review on GoodReads will be updated and added to as I read: LINK 

*****************

LYME info table at SouthFields Village EXPO on Saturday
I'll be greeting visitors at one end, with a table full of information about Lyme disease at the
SouthFields Village EXPO, at SouthFields Village Public School (110 Learmont Ave., Caledon, ON) on Saturday, November 16th from 10 am to 4 pm.
Come early, and come hungry!

Here's a short list of what you might see, experience or enjoy on Saturday:

• Fresh crepes will be available for sale
• Purchase door prize raffle tickets. 
• Glen Echo has generously donated a gift certificate for a live Fraser Fir Christmas Tree.  
• Help decide who wins the Chef Challenge.
• Yvonne Ibarra will be doing a live Zumba demo first thing in the morning 
• Birthday party on stage 
• A magician at noon and 
• Games and crafts all day long 
• There’s even a mini-arcade with cake and please do bring a present. We’ll gladly make sure that your new, unwrapped gift will make its way over to kids who would otherwise go without birthday or Christmas presents this year.
• Anybody can drop in and try their hands at the pottery wheel. After the show Wendy will take the pieces home to fire and glaze them for you so that you’ll finally have that special work of art on your mantelpiece.
• Farmers’ market and a local small business showcase. 
• A really cool speakers’ series with half a dozen speakers covering a wide range of subjects from how to take the perfect holiday photo, planning your next home reno project to hunting for the paranormal. That list is already available online at caledonspectrum.com.
• Mark Grice will start with a blank canvas and finish with a beautiful painting within 3 hours. You can watch him paint and even get to bid in the silent auction for the finished piece. 
• Several established, professional artists will be joining us in a gallery space and lounge area where you will be able to explore the art and relax with a cup of hot apple cider, care of Spirit Tree Estate Cidery. Light refreshments will be available or you can bring in something from the food vendors in the main hall. Meet and chat with the likes of Merle Harstone, Cory Trepanier and more as they exhibit their work.
• Both Sparky the Firedog and Caledon Community Designated Driver Association’s Home James will be on hand. 
• Live mannequins will be modeling one-of-a-kind Hattitude Jewellery and other pieces from Chic a BOOM.
• Dignitaries have been invited to partake as judges in the chef challenge (to take place around 11am) but the general public is also going to have a chance to pick their favourites throughout the day.
• Show proceeds will go toward supporting music and arts programmes at SouthFields Village Public School & Mayfield Secondary. Other proceed recipients will include Family Transition Place, Caledon Meals On Wheels, CCS, Cystic Fibrosis and more, as there will be a number of non-profits represented at the show and various elements to support them. But don’t think we’ll be there just to get your money. 

Admission is free, parking is free, the speakers’ series is free (but seating is limited and will be on a first come first serve basis), and so are the crafts and games at the blazin’ birthday party.

SouthFields Village EXPO: Nov 16 - 10 am to 4 pm: LINK 

Tick or Treat Invitation in Brampton

If you are in or around Brampton and looking for an outing around Halloween while supporting Lyme Disease and getting out more information, please share this public invitation! Note - this is not our house ---- but I stopped by two weeks ago and stood amazed at what they already had on display!
Visiting hours are during the day as well as evenings over three dates, starting this weekend. See information, address and notes below.

Please bring along some folding money or change and look for the wooden box marked for Donations,  pick up some brochures, and bring along friends, neighbours and children of all ages. Every day I receive more emails from people newly diagnosed or struggling with Lyme Disease. We need to share as much information as possible. Thank you to Jeff and Martine for putting on this show!

INVITATION

Greetings from THE KING AND QUEEN OF HALLOWEEN :)

LYME DISEASE IS GROWING IN A "SCARY" WAY IN ONTARIO AND CANADA!!

This is a public invitation to come and visit us for our Halloween Haunt Fundraiser called "TICK or TREAT" for Lyme Disease. ALL proceeds going to CanLyme (Canadian Lyme Disease Foundation). PICTURES ONLY SHOW YOU A SNEAK PEEK!!!
We've been featured on CTV, Breakfast Television and Rogers TV in the past. We'll have a professional make-up artist and actors this year.

PLEASE help us raise AWARENESS and funds for Lyme Disease research and treatment.
YOU DON'T WANT TO MISS THIS SPOOKY EVENT!!
Please note: Before dark we won't have actors or anything popping out. If you have children under the age of 5, we suggest to visit during the day.

This year we're working on 8 different scenes!!
* Crazy Circus
* Zombie Baby Playground
* Witches Den
* Dirty Meat Locker
* "Off with their heads"
* Cemetery
* Mad Scientist Lab
* Spooky Scare-Crows

We're currently working on our backgrounds. Our props are ready and waiting to be placed in their spots (you can see some of them waiting patiently on pictures)

THIS SPOOKY EVENT IS ON THE FOLLOWING DATES/TIMES:

*SATURDAY, OCTOBER 26th, 2013 (11 am-10 pm)
*SUNDAY OCTOBER 27th, 2013 (11 am-9 pm)
*THURSDAY OCTOBER 31st, 2013 (5 pm-10 pm)

FREE to enter but we're asking to show your appreciation by donating generously in the wooden box (you won't miss it).

**100% of the proceeds will go to support CanLyme (Canadian Lyme Disease Foundation)**

LOCATION: HAUNTED YARD @ 2 WILDERCROFT AVE, BRAMPTON, ONTARIO
(You simply CAN'T miss it!! You will see a 12' Circus Tent in the front yard and a big cat on the roof; corner house from Hinchley Wood Ave.)

We have tons of money and efforts invested in our props.
It usually takes us about 6 weeks to set up.
It's worth the trip to come and have a look!! Maybe you want to park at the plaza on Conestoga and Bovaird and walk down; it is only about two blocks.
FOR THE MEDIA: We're available pretty much any time. We're outside working in the garage/yard every night.

Martine & Jeff (The Halloweenies)

David Suzuki and Elizabeth May about Lyme Disease in Canada

Lyme TV show with David Suzuki from last night (see blog post "Ticked Off") is online as from today. Dr. McShane, who treats many of us Canadian Lyme patients who are not allowed to get treatment in our own country, is featured, said hubby, who watched since I had to be elsewhere. Very conflicting statements, he said . Exactly what we Lymies have to try and wade through.  I've now watched the online program and emotions have been up and down. 

Who is lying and why?  If patients get better with treatment, what is the problem? Why do people like dr. Wormser, about 22 minutes into the video, still deny that Chronic Lyme disease exists? Does he think we ENJOY being sick?

The Nature of Things: David Suzuki presents "The Mystery of Lyme Disease" 

http://www.cbc.ca/player/Shows/ID/2411526805/

Some screen grabs, faces and names of people on the conversation for the program (click to enlarge) 

Why we need a national Lyme disease strategy The Hill Times October 7, 2013 After tabling my bill calling for a national Lyme Disease strategy, my office has received hundreds of heart-wrenching messages from Lyme Disease sufferers and their families. Here is a sample, used with the permission of the writer. Please help us raise awareness of this dreadful illness. “Due to my illness I have lost my consulting business which I ran for 14 years. However I consider myself to be one of the lucky ones because my family fully supports me and has made it financially and emotionally possible to regain my health. We have spent over $100,000.00 to regain my health not including lost wages.” - B. Edwards, Abbotsford, British Columbia Please read my latest article in the Hill Times, sign my petition in support of Bill C-442, and call your local Member of Parliament. I know a health policy briefing should touch on all areas of health policy. We have critical issues ahead as we work to protect universal access to top-notch health care, reduce wait-times and drug costs, and meet the growing challenges of an aging population. The deficits in our mental health programs alone could occupy the House of Commons for the fall session. That I write now about Lyme disease is because it is timely and urgent. One of the first private member’s bills slated for second reading in the next session will be Bill C-442. It calls for a National Lyme Disease strategy, and, while I am the author of the bill, I hope it will not be seen as “my bill,” but rather as a bill every Member of Parliament can champion. [Read rest of article...]

Ticked off: The Mystery of Lyme Disease

The last few weeks have been incredibly busy, with Lyme Disease information sessions at the huge Outdoor Farm Show in Woodstock, the Brampton Fall Fair, and various other events. Every day there are emails from people who need answers about their symptoms or tests, their search for a doctor, and their desperation about not being able to get help. Those are all reasons why this blog hasn't been updated lately! However, please pass on the information below, about Lyme Disease on David Suzuki's program.

TICKED OFF:    THE MYSTERY OF LYME DISEASE Premieres THURSDAY, OCTOBER 10, 2013 8:00 PM (8:30 PM NT) on CBC-TV's The Nature of Things

September 17, 2013 - Lyme disease, a mysterious tick-borne illness, is the fastest spreading vector-borne disease in the United States, and over the past decade, the tick that carries Lyme has been spreading across Canada with alarming speed. On Thursday, October 10 at 8:00 p.m. (8:30 p.m. NT), CBC-TV's The Nature of Things premieres TICKED OFF: THE MYSTERY OF LYME DISEASE, a fascinating and eye-opening documentary that explores a disease that has devastating effects, is often misdiagnosed and mistreated, and continues to be mired in a medical controversy. More than 30,000 cases are reported in the USA every year, but the real number could be as high as 300,000. And despite hard evidence that the Lyme-carrying deer tick has already established populations across Canada, some people claim that patients here are still being told that they cannot contract Lyme in this country. Doctors agree that if it's caught early Lyme disease can usually be cured with two to four weeks of antibiotics. There are others who believe that if it's not caught early, the infection can develop into a debilitating condition they call Chronic Lyme. Yet unlike West Nile, Encephalitis or SARS, where the medical profession and scientists joined forces to find better treatments or a cure, many patients, who claim to have chronic Lyme, say that they are being denied treatment and left to suffer. So why is this happening? Ticked Off: The Mystery of Lyme Disease tells the stories of Canadians who have experienced years of suffering, misdiagnosis and mistreatment and investigates the cause behind the current controversy that surrounds the disease. From the micro world of the tick and its disease-causing bacteria, to the macro world of human suffering and medical science, this documentary investigates the story behind this current medical mystery.        ____________________________ Ticked Off: The Mystery of Lyme Disease is produced by Merit Motion Pictures in association with the Canadian Broadcasting Corporation, and with the participation of the Canada Media Fund, the Rogers Documentary Fund, with the financial investment of Manitoba Film & Music, and with the participation of the Government of Manitoba - Manitoba Film and Video Production Tax Credit and the Canadian Film or Video Tax Credit. It is produced by Erna Buffie (Smarty Plants, The Changing Sea, Recreating Eden) and directed by Ryszard Hunka (The Battle of the Bag; Love, Hate and Propaganda; The 8th Fire). Merit Motion Pictures is one of Canada's leading producers of factual entertainment programming. Founded by executive producer and industry veteran Merit Jensen Carr, Merit Motion Pictures is known for producing multi-platform programs that amaze, inform and delight. Recent highlights include the documentary specials Smarty Plants: Uncovering the Secret World of Plant Behaviour, Ballet High, and Conspiracy Rising, the multi-award winning CBC co-produced One Ocean series; TuTuMUCH, The Truth About Shoplifting, and Surviving The Teenage Brain. For more information, please visit: www.meritmotionpictures.com  For photography please visit: www.cbc.ca/mediacentre Media Contacts - To Request a Screener, to View Online or Arrange an Interview Please Contact: Jennifer Jensen-Tracy, 226-387-4067, jen.jensen@sympatico.ca Christine Liber, 416-651-4722 x 1, christine@libertyink.ca

Questions: Guest post by Dr. Alan MacDonald

Every day I receive new emails from people who are desperate to find answers about Lyme Disease, flabbergasted to hear that there are currently no doctors readily treating diagnosed cases in Ontario (and Canada), and a growing list of patients suffering from the debilitating effects of a neglected disease. Most times I can only lend an ear, refer to other websites, or to the Lyme Links on the right of this page.

Dr. Alan MacDonald was mentioned in this blog before, under the post where he reported a million new cases in Germany in 2012.

He posted the following questions as a comment to this blog. You can find the answers yourself, directly "from the horse's mouth", so to speak, by watching some video clips online. Most of us Lymies end up with more questions than answers, even after doing hours of research, talking to other patients, and living the life of Chronic Lyme disease.

Dr. Alan says: Test your Knowledge about Lyme Borreliosis

1. What diagnostic functions does the Pathologist provide to the patient and to the patient's physicians?
2. What is the relationship between microscopic presence of a known pathogen in diseased tissue and the causation of the disease?
3. What is the true narrowest of the narrow diagnostic coverage of B31 Borrelia test kits and the 100 GENOTYPES of wild Borrelia in the USA today?
4. What is the current test kit ability to provide laboratory evidence of Miyamotoi Borrelia Infection in human patients?
5. What is the nature of DNA in flux in wild type Borrelia? If the Borrelia DNA mutates away from the DNA structure of the B31 strain, how do current test kits function in discovery of Antibodies which are not picked up by current B31 test kit Borrelia B31 strain proteins?
6. How effective are DNA B31 Borrelia test kits in the blood testing of European type Borrelia infections?
7. What is the meaning of the phrase, "The PATIENT Failed Therapy for Borreliosis complex disease"?
8. Do physicians ever "fail patients" with Borreliosis complex?
9. How many Genotypes of USA Borrelia are now known to be in existence?
10. Do mutations in Borrelia DNA alter the shape of the mutant Borrelia shape?
11. Are mutant Borrelia misdiagnosed in microscopic studies by USA and by European pathologists? Why are Biofilm type Borrelia infections ALWAYS CHRONIC Borrelia infections?
12. Does the CDC accept CHRONIC Borreliosis complex type illnesses in humans?
13. Does the CDC promulgate the notion that Erythema Migrans or the "Bull's Eye" type is the only acceptable skin sign of Early Lyme Borreliosis?
14. Are there at least 17 different Erythema Migrans skin patterns which are encountered more frequently than is the CDC "Bull's Eye" erythema migrans subtype?
15. Should the CDC Rules for diagnosis and therapy of Lyme disease be isolated as a small subtype of the real life wide spectrum of Clinical forms of Borreliosis?
16. If a patient has "Borreliosis-complex", is the patient obliged to follow the "CDC Rules" for the small subset of "Lyme disease" illnesses?
17. Does Borreliosis include cases of deaths, verified by autopsy study?
18. Does the CDC website for Lyme disease include references to ANY DEATHS from Lyme disease?
19. Does Borreliosis Complex include reports of autopsy confirmed Human deaths in European patients?
20. Does the CDC Lyme website include blindness as a possible presentation of Lyme disease?
21. Does Borreliosis-complex include many many reports of Human blindness as a complication of human Borreliosis complex infections?
22. Is there a "Kindergarten simplification" of the Disease presentations of Borrelia and related co-infections?
23. Is there at present research underway in Norway to detect and to directly visualize Borrelia spirochetes in spiral form, Borrelia Cystic forms, and Borrelia String of Pearls forms in human circulating blood by direct Microscopic examination?
24. Are Round Body [Cystic Borrelia] forms capable of causing human tissue injuries?
25. Is the surface Borrelia protein demonstration to the immune system turned "inside out" by Cystic Borrelia?
26. Do round body Borrelia regenerate spiral forms of Borrelia under correct conditions?
27. Is a "clinical " diagnosis of Lyme disease or of Borreliosis - complex ever medically justified? 
28. Did Dr. Allen Steere in 1975-1981 have any blood tests available to him to ratify his diagnosis of any case of Lyme disease?

Videos I II III IV  will assist you in answering these and other neglected topics in the pathobiology of Human Borreliosis - Complex  infections.

Go to YouTube  ------- search for "Lyme MacDonald"--- to find the FREE video lectures or see if this LINK takes you to a collection.

Sincerely,
Alan B. MacDonald, MD
August 31, 2013

Two bites

As stated many times, my biggest concern is about the children getting bitten, getting sick, and not diagnosed until the disease had taken a hold in their little bodies. They don't know the feeling of being healthy; they go through so many changes. And we, as adults, are quick to self-diagnose as growing pains, too much sun, not enough water, and a lot of other explanations.

I'm not saying every little symptom might be Lyme Disease, but due diligence in this case might be really good. Case in point - two bites on two young children, with the parents not knowing where to turn. One day soon, this MUST stop and doctors would be quick to act, unafraid to treat, and the whole system will benefit from it. I can dream, can't I?

FIRST TODDLER - Ottawa region

[Early in July 2013, from the child's mother:]
I went to my family Doctor because of a rash on my son, who just turned 3.  We went camping for his birthday.

Our doctor suspected Lyme disease and gave us a prescription of amoxicillin, 6 ml, three times a day for 10 days. He said it could be that or ringworm, but wanted to be on the safe side and gave a prescription.

I didn't notice an actual tick bite after this trip, but last Monday he started with a rash. I thought it was just a bug bite. It started to get bigger and bigger. I gave him some Benedryl, which did nothing. When it lasted a few days, I thought, maybe a spider bite. Then it just went all over him: his chest, bum, arm, leg. That's when I made the doctor's appointment. He has also since started complaining of sore stomach and legs (he points to knee area specifically). I thought maybe just growing pains.

One month ago we were camping and found a tick in the bed he and I shared. But I checked him over, and everything looked fine.

I am very worried and would like to see a doctor who has more experience with Lyme Disease.

[Reply from dr. Ernie Murakami:]
The rash is more generalized  and large. The dose of antibiotics is correct, but the length of treatment is too short.

[Three days later, from the mother:]
I was able to get 3 additional weeks of meds for my son, so 31 days total. I hope he will have no further complications.

[Two weeks later, from the mother:]
He had been responding well to treatment, but has been complaining about headaches and stomach aches. His behaviour was so much better but has seemed to be erratic again. I'm hoping for the best outcome from his antibiotics, but am still worried.

SECOND TODDLER - Peel region
On the same day as the original email from this boy's frantic mother, I received another email and picture. This time it was a little 2-year old who was bitten.

Quote below:
My son who is 2 years old was bitten by a tick and has the tell-tale target bite on his elbow. We went to our GP today and they gave us a ten day treatment of antibiotics.  I just want to confirm I am doing everything I can do to make sure if he has Lyme we do everything now to make sure he is rid of it.  My brother in law has been living with Lyme for many years and we are well aware of it's harmful effects.

[Reply from Dr. Ernie Murakami:]
"You should insist on 4 weeks minimum on this child with this rash since it is a little larger than usual target rash."

PROTECT YOURSELF FROM TICK BITES

As the August long weekend here in Ontario promises to be sunny, bright and beautiful, please remember to pack care and prevention along with your swim and picnic stuff! Bug spray with DEET, socks covering the bottom of light, long pants, and stay on the path while hiking - those are the three main things.

Check your clothing and pets for ticks because ticks may be carried into the house on clothing and pets. Both should be examined carefully, and any ticks that are found should be removed. Keep the tick by putting it into a sealed baggie with a moist piece of paper towel or cotton wool. Placing clothes into a dryer on high heat for 30 minutes effectively kills ticks.

PERFORM DAILY TICK CHECKS: 

• Under the arms
• In and around the ears
• Inside the belly button
• Back of the knees
• In and around all head and body hair
• Between the legs
• Around the waist

VIDEO TO SHOW KIDS

For those who are squeamish about bugs, watch this short little video talking about this serious problem in a light-hearted way: