Wednesday, May 29, 2013

Tick Tales
During the last two weeks, I've had several people emailing or talking at various meetings about finding ticks on themselves, their children or their pets. The last three events were in the Kawartha Lakes area (found a tick in a child's ear), in the Font Hill area (ticks on teenagers) and in the St. Catharines area (ticks on an adult, twice in one week). Many were grateful for having had brochures or cards from various talks about Lyme Disease and able to take care of the problem. One woman was just walking in a Home Depot when she found a tick in her hair! Remember that ticks can be very small.
Picture from Public Health Agency of Canada
The picture above is from the PHAC website, where there is also an updated list and maps of known endemic areas. No longer is only Turkey Point mentioned in Ontario, for instance. Do stop by and take a look at THIS link and protect yourself and your family.

I'm really excited about the news following below, and which has now been made public!

NEW Foundation for Vector-Borne Diseases

A new Foundation for Vector-Borne Diseases (carried by ticks, mosquitoes, etc.) to support research, accurate testing and proper treatment of Lyme Disease has been founded in Canada. The foundation is partnering with the new Humber River Hospital in Toronto, opening in 2015, to develop a world-class facility in the country.

Rossana Magnotta, who worked hard to establish the G. Magnotta Foundation for Vector-Borne Diseases, says: "It'll be the Mayo of Canada, when it comes to Lyme disease research. We're not out to panic people, just to spread awareness and get accurate testing - that's the biggest hurdle."

Gabe Magnotta lost his battle against this devastating disease in 2009. It took years for him to get diagnosed and even when treatment started, it was too late for his body to overcome the ravages inside. Since then, Rossana has worked tirelessly alongside CanLyme to bring more awareness about the often misdiagnosed disease. The foundation is named in his memory.

CanLyme urges public to be “tick aware” this season

Tick season has begun in many parts of Canada. Ticks are on the move above -2 degrees C / 28.4 F.

Lyme disease is the fastest growing infectious disease in North America. The United States reports over 30,000 cases annually, and estimates the disease can be underreported several fold. Disease carrying ticks are becoming more and more prevalent in Canada and are on the move.

Ticks are found Canada wide. The species of ticks that transmit Lyme disease to humans are only about the size of a poppy seed when they are in the nymphal stage, and only about 3 mm in length in the adult phase. Different species of ticks are capable of transmitting several different diseases to humans including Lyme disease. These ticks are transported randomly throughout Canada by our friendly migratory birds that can also harbour Lyme disease and other diseases in their blood. Remember, no tick is a good tick.

Lyme disease can cause long‐term health issues if not identified and treated early. It can affect the brain, eyesight, hearing, heart, nervous system, muscles, joints, digestive tract, and lymph nodes. Because Lyme disease is a multi‐system disorder many systems of the body can be affected at once, therefore, it can often be misdiagnosed.

Lyme disease is being missed in Canada as doctors are not told of the limitations of blood tests used here, and are not educated as to the complex symptoms that result if not caught and treated early. Lyme disease has been misdiagnosed as multiple sclerosis, Parkinson’s disease, ALS (Lou Gehrig’s disease), several forms of arthritis, chronic fatigue syndrome, fibromyalgia, bowel disorders, and many other diagnoses.

Ticks can be found anywhere that birds fly: in your lawn, on your pets, in tall grass or brush, on logs or
If outside do not brush up against brush or tall grass, walk in the centre area of trails, and wear a repellent containing DEET.
Pets can carry ticks into your home. Talk to your veterinarian about protecting your pets.

Use fine tipped tweezers to remove an attached tick, being careful not to touch the body of the tick (get as close to the skin as possible then pull backwards). Apply antiseptic to the area immediately. Save the tick if possible and call us, or your local health department. Waiting for blood tests is the wrong way to deal with possible Lyme disease as detectable antibodies do not develop for several weeks, when the disease has disseminated into deep tissue making treatment much more difficult.

Prevention is the best medicine. Be tick aware, NO TICK IS A GOOD TICK!
For more information on prevention please visit

Lyme disease is a serious threat Lyme disease is on the rise in Canada, yet treatment and public awareness are largely inadequate. Canadian Lyme Disease Foundation (CanLyme) is dedicated to raising awareness and promoting Lyme research, education and treatment.

**Information from Press release by CanLyme, and from personal discussions with Rossana Magnotta.
** Article in the Toronto Sun

Tuesday, May 28, 2013

About ribbons and books

Diane with green Lyme Awareness ribbon
Change of pace required! It feels as if I've been running a marathon these last few weeks, and I'm sure many others feel the same way. This month of May has surely been a busy one with Lyme awareness being pushed far and wide. Hoping and praying that there will come a change, soon, before more people have to lose their health, their sanity and possibly their livelihood!

I've been sending packages of Lyme Awareness bracelets all over the place and am waiting for pictures to arrive.

Here's Diane in England, a long-time friend who also spent time with her family of growing boys with us. That is almost a decade ago now!

Diane wore her green Lyme awareness ribbon and bracelet to work, making copies of brochures to hand out and generally spreading the word as best she could. Thank you so very much!

More ribbons and bracelets were sent to China, Sweden and elsewhere in Canada. Packages were also sent to South Africa, but oh my goodness, the postal service .... So far, nothing reported as having arrived. A birthday card I sent to a friend in November 2012 "only" took 6 months to be delivered, so I guess we'll have to wait and see.

Book giveaway

If you've been playing around on this blog, you might have noticed the headings on the right side, with favourite books, a personal Goodreads reading challenge, and so on. I've been using Goodreads for some years now to keep track of various books I read and still want to read, and especially of series of books by particular authors. The Lyme brain needs all the help possible!

Daughter-in-law Jenni, a graphics artist, does wonderful work and has been asking me to write down some of the stories I usually bored the family with at dinners or other get-togethers. She enjoyed the stories about growing up with meerkats, chameleons, hedgehogs, various cats and dogs and other critters. Our family was not the usual, I suppose. And I love all sorts of creatures, including bats, snakes, grasshoppers, colourful caterpillars, spiders and such.

So, for Christmas 2012, we put together a little book with about a dozen stories. She illustrated them beautifully, filled with joy and sunbeams. We printed copies to give to family and friends.

Front cover
The little booklets were received with much joy from kind people who supported our work. I couldn't believe how much work was involved and how many times the pages, stories, wording and more had to be redone, reread, checked and changed!

Below is one of the early versions of a page, showing one of Jenn's lovely illustrations. Some pages contain black-and-white illustrations.

If you would like to have a copy as well, three are up for grabs, available to Canada, USA, Australia and Great Britain. We don't choose the winners; they are chosen by Goodreads. Below is the information:

Goodreads Book Giveaway

Tiny Tales by Marlene Ziehl Spies

Tiny Tales

by Marlene Ziehl Spies

Giveaway ends July 27, 2013.

See the giveaway details
at Goodreads.

Enter to win

Various eBook versions
For an eBook version, you can buy a copy or give away as a gift to someone else if you wish. We've kept the price very low in order for more people to enjoy a copy themselves, to read while waiting for an appointment or in line. It is available in all the most popular versions, including Epub.
Buy from ; or Kobo ; or  Nook  ; or  Certification
Various other formats, including reading online in HTML format: Tiny Tales 

Thanks for reading, commenting or not, and sharing this blog and my journey through the maze of Lyme Disease.

Thursday, May 23, 2013

Proper CN Tower pictures

As promised --- here are the best pictures taken and worked on from the CN Tower going green for Lyme Disease awareness on May 11, 2013. We were saving them for exclusive use by newspapers, but after two weeks, nothing --- big surprise. So, here are the pictures.

The earlier pictures from that cold, windy, blustery, FUN evening were posted on THIS LINK here on the blog if you haven't seen them yet. If you click on a picture in the blog, you should be able to see a bigger view. If you use them elsewhere, please let me know? It would be fun to link them together!

We were gathering at the foot of the CN Tower from about 8:00 pm on May 11. We had to move around quite a bit to try and keep warm! But we had a lot of fun and met up with a lot of great people.

Group shot without the tower in the back. Poor hubby, who was taking the pictures, had a difficult job getting us all to stand still, and to avoid the bright lights in the background!

 It was cold and windy, can you tell? Middle of May and we were wearing several layers! But we were in high spirits, as you can tell from this shot with Mary and Debra.

Love this shot with Patricia, wrapped in that pretty scarf and holding a CanLyme flag!

CN Tower --- the group shot! I was holding back on these pictures to give exclusive use to interested newspapers, but as usual, they didn't go with the story. We just have to keep pushing.

What a month this was for Lyme Disease Awareness! Together, we all make things happen and more people have to take notice. 

Wednesday, May 22, 2013

Brampton Lyme Walk 2013

What a weekend! So much happened around Lyme Disease Awareness and nothing would have been possible without the help of friends, family and adopted family, Lyme patients and their families and various people who took on the cause as well.

If you haven`t seen them yet, please look at some of the pictures taken the night before at Niagara Falls, when green lights helped to raise awareness about Lyme Disease. LINK 

Saturday morning, May 18, dawned beautiful and slightly cloudy, just right for the hard work of setting up for the Awareness day at Chinguacousy Park in Brampton. Some of the pictures are shared here, but there are lots more to come. At the end of this post is a link to see more pictures in an album if you like.

The view from the pavillion where we were set up
 We started carrying tables and setting up, waiting for others to arrive and claim the spot where they wanted to be in order to talk to people attending the Walk. We had shade, a view of water, a slight breeze - it was gorgeous.
Such a great space to plan the layout! 
 Various friends arrived from towns all around to help plan, move, hold down table cloths, tents, brochures, snacks, T-shirts and more.

Young photographer on duty. Her pictures will follow!
 Rebecca was on duty with her camera, but also played with my cell phone - where she found a filter to only make anything green in colour and the rest in black-and white. Quite an effect!

Jim Wilson and Councillor John Sanderson - with Poutine sweatshirt!
 The Lyme Mobile attracted a lot of attention! Everyone wanted their picture taken with it. Councillor John Sanderson was there from the start, helping us set up and talking to various people.

 Friend Rouxline helped people fill in their registration forms and sign waivers if they haven't done so online, and then another table handled the registrations, bracelets, and T-shirts.

Gathering around the Lyme Mobile for a group shot
 We were planning to start the Walk at 11 am, but so many people walked on to register that we were getting later and later. No matter, everyone was in high spirits and had time to talk to many other people, create support networks, get advice and sign more petitions to ask for a change in how Lyme Disease is handled in Canada.
And they're off!
 People of all ages took part! It was so great to see families out for the event, sharing and caring together.

A stream of green behind the Lyme Mobile
 Kevin grabbed my camera and took loads of pictures as the walkers went around the park.

Picture taken by special request: Val and I with John 
 The park personnel was wonderful, helpful, supportive and eager to bring whatever we needed. They helped us carry the heavy stuff, set up tents and even find a lost walker .... Thanks to everyone, Val!

I wanted a picture with all the guys! Court Steggles, Jim Wilson, Kevin Sherriff and Dr. Ernie Murakami
 Court is the outgoing president of the LDAO (Lyme Disease Association of Ontario), Jim is the president of CanLyme (Canadian Lyme Disease Foundation), Kevin is the president of LymeSavers and Dr. Ernie is the founder of the Murakami Foundation.
Glass pendant made by Sheila in the UK
The lovely glass pendant with rainbow elephants attracted a lot of attention! To see more of Sheila's work, including cards and sterling silver, go to her link Handmade by Sheila. Thanks, Bendoggie!  (We met online years ago, and in person in London, England ... where our group had so much fun that the five-star hotel kept dropping stars and ended as a B&B by the time we all left again!)

Special paintings done in South Africa for the Walk --  limited copies available
If someone reading here would like a copy of the lovely watercolour froggies done by Karin, please contact me and we can work out something. These were sold at the Silent Auction, but more people wanted to buy some. You can also see Karin's other work on her Gallery KC.

All in all - a glorious day, and my dream of having a place where Lymies can find and give support, was very much true. The feedback was very positive, even if we didn't have as many people as in 2012. With the weather so nice, you can't blame people for wanting to go to the cottage!

DONATIONS  (updated May 23)
However, donations are still coming in. Please hit the "Contact" button at the top if you would like to make a donation, no matter where in the world you are. For ONLINE DONATIONS, go to CanadaHelps and choose one or more of the Lyme Links there. You can put in a note that it is for the Brampton Walk 2013 effort, but all goes to the charity.

More pictures taken on Saturday in an online Album if you want to see:

Sunday, May 19, 2013

Niagara Falls for Lyme Awareness

May 17, 2013: Niagara Falls going green for Lyme Disease Awareness for the first time ever! Arrangements were made for people to arrive from all over to witness the event. We planned to meet at Table Rock around 8 pm. Some were inside, getting coffee and staying dry.

The tulips were gorgeous and just had to make it into a picture! No, it was not raining, for those who have not yet visited these falls - the spray is carried everywhere so always remember a jacket or something if you don't want to get wet!

Brought a T-shirt for the next day's Brampton Lyme Awareness Day for Jim Wilson, president of the Canadian Lyme Disease Foundation, and pinned it to his back. He let me -- brave man! 

 Nine o' clock and the lights turn green for the first time ever to highlight the Falls.

Green lights on the Falls for Lyme Awareness - what a wonderful sight! Pity it is needed, but so grateful for this vehicle to carry awareness.

Nina brought her beautiful dog -- and used the time to chat to everyone, meet people and to make connections. Her Lyme Disease had kept her housebound for most of the last two years. This disease just takes so much from so many people, even if it is not visible at first glance. 

Green lights on the American Falls against the darkening sky at 9:10 pm. The lights are housed on the left in this picture. 

Posters to tell the story about ticks, Lyme Disease, Canada Health and more. 

Old friends: Janie, Pam and I met more than a decade ago through an online chatroom, watching webcams in South Africa as wildlife went about their days. We have met several times in real life, and they came to show support at Niagara Falls. 

Setting up, trying to get a group shot of the 40+ people who attended the green Niagara Falls. 

Lisa Hilton in the USA captured a screen grab from the webcam over Niagara Falls. While we were there, I sent cell phone pictures to Facebook and people were commenting. Even from South Africa --- Pam was watching at 10 to four in the morning, with her little dog on her lap, in real time as history was made at Niagara Falls. What a wonderful experience to be a part of this event! 

Friends together with Arno behind the camera: Carolyn, Kim, Pam, Janie and Kevin.

Dr. Ernie Murakami poses for a picture with Christene (?), Marie and Debra.  

LymeSavers: Kevin, Cari and Bob

Jim with his T-shirt pinned to his back, and Kim chatting in front of the Falls. 

These are only a few of the pictures taken on Friday, May 17. Some 40 pictures are on an online album HERE if you want to see.

All in all, a magnificent evening! We only got home at midnight and then still had to slice up oranges to prepare for the Brampton Lyme Disease Awareness day the next morning. We only got to bed around 1:30 am and up again at 6:30 am. Busy captioning those pictures to share. It was a great day, glorious sunshine, and with good connections for Lymies, who need the support of the community to life with this disease. 
Watch this space .... 

Wednesday, May 15, 2013

A week of Lyme Disease Awareness events

Phew! What a week is the week that was! I tried to post updates, but that didn't happen. So here is a short summary.
Actually, it started late in April, with a meeting at the Brampton City Council to receive the official proclamation of Lyme Disease Awareness Month. Friend and staunch supporter Joe went with me.
Tweeted by the Mayor, Susan Fennell, while addressing Council. 

Formal picture taking afterwards
On May 2, This story was printed in the Brampton Guardian on May 2, 2013. Lead-in for Lyme Awareness. Dogs can get treated in Canada for Lyme, humans not ....

Jenni, who designed our tick, and I in 2012
The story was picked up all around North America, in some two dozen or more publications and online news webs.

May 3-5 was filled with a Lyme Disease awareness table at the Royal Botanical Gardens in Burlington, Ontario. Three days, talking to hundreds of people, handing out brochures, collecting signatures and helping people to know that the disease is out there. What was very scary, is that of the about 500 people who stopped to talk, only about 20 didn't know about the disease. All the rest either had Lyme themselves and struggled to get a diagnosis or treatment, or they had a very close family member with Lyme disease. This is a huge change from two years ago, when maybe one in four people I talked to, knew about Lyme disease.

CanLyme table at the RBG Home Show

May 6 - a meeting with a group of lady friends, all supportive of the struggles we Lymies experience. There were 8 of us, and all of us wearing Lyme ribbons for awareness!

Green Ribbon supporters
May 7 - CARP, the organization for Canadians as we age, is a group I've belonged to for some years. Yes, I'm over 50! They had a meeting in Brampton to start a new chapter and Moses Znaimer was going to be there. I attended - fully intending to get the ear of whoever was willing to listen. Got talking to Susan Eng, Vice President for Advocacy at CARP. I'll follow up for sure. (Blog post

I'm sure more things happened on May 8 and 9, but then on May 10, we went off to Whitby to listen to Dr. Ernie Murakami and to spend the night at the house of LymeSavers president, Kevin and his family. There were about 120 people who came to listen, ask questions, give feedback and share stories. 

The LymedOut blogger in person! 

Dr. Ernie, sports fan, watching hockey in a Blue Jays jersey
Then of course, the next morning started with my husband finding the huge tick on a dog, and us removing it. That post is on this blog if you haven't seen it. The ticks are out there! Please be aware! 

May 11 was cold and windy --- but the LymeSavers were out in force for the first event of the new charity!
Pictures will follow. 

Dinner in Toronto, then off to the CN Tower to see the green lights, as you have seen on this blog. 
Sunday - Mother's Day here -- I spent resting and enjoying a dinner later as prepared by my family! Thanks, guys, all of you! I only asked for ice cream and we went out to enjoy a bit of 31 flavours. 

And today --- just before diving into the Brampton Lyme Disease Awareness Day and the green lights on the Falls, I've just had confirmation that Calgary's Langevin bridge will turn green! The lights will be on from midnight on Friday to sunrise, and again from dark on Saturday to midnight. Hope Lymies in Calgary can be out in force! 

Calgary's Langevin Bridge will go green! 
Their Facebook page will post about the green lights on the bridge, and I believe there will be Twitter messages as well. I've asked them to include the #lymeprotest and #lymeaction on Twitter for us to pick up and send on. 

All in all, an exciting week!

See you on Friday at the green lights on Niagara Falls, and on Saturday in Brampton for the second Lyme Awareness Day!

Tuesday, May 14, 2013

Green lights for Lyme on CN Tower

Finally the day arrived: May 11 - the day when Toronto's famous landmark, the CN Tower, would go green for Lyme Disease Awareness!

It was cold and breezy and with lots of construction around the tower, it was an adventure to get ourselves down to the assigned spot. But Lymies are nothing if not determined. About 30 of us walked, drove, shuttled and subwayed ourselves to the foot of the tower.

We were disappointed, though, when the green wasn't solid as promised, but mixed with blue. It was very hard to take proper pictures, showing green from bottom to top! We figured the blue was mixed in for the Maple Leafs or Blue Jays (sports teams, for those who, like me, don't really know sports).

But that didn't put a damper on us. We laughed, made fun, hugged, swung glow sticks, bopped each other with blow-up flags, bounced and jumped to stay warm and generally had fun!

Pictures are uploaded to an online album but will be shared here too. Oh and I just had an email that another Canadian icon will go green on Saturday ... more info to follow as soon as it is confirmed! It is in another province, and we hope pictures will follow!

So -- a group of us arrived at the CN Tower before sundown, which was after 8 pm. We had to traipse and walk and encounter detours, climb over construction, watch out for walls and generally walk way more than we bargained for! But we met under the Canadian flag as planned, thanks to Mary who scouted out the place before the time.

As darkness approached, we could see the colour starting to show on the tower.

But it kept getting blue in there as well, which made it very difficult to get pictures!

Nice one with green at top and bottom, and just a little blue in the middle, as the lights were changing.

Arno behind the camera, trying to capture some pictures while the tower was green.

Canadian flag waving in the corner.

The group gathering at the tower, wrapped and layered against the cold!

Kevin and I -- moving as Arno tried to get a shot. I think it is kind of cool, though, with the tower green and the moving heads in front!

Cari and Kevin in front of the tower.

Cold people chatting. Yes, it is Canada, but this was the middle of May and we didn't expect temps that low! In fact, the next day there was snow in the air.

Mary, Debra and I in front of the green tower.

Grandma and grandkids in front of the green tower, holding signs that said .....

... I was only 5 years old when my Nannie got sick; and I have never seen my Nannie well, but I would really like to!

Bob seems to be a little chilly .... he wasn't wearing enough layers!

Our photographer for the group shot, Arno, on his back on the ground, taking the picture upside-down! Some kind soul thought to keep him warm with a green blankie .....

Now we are getting ready for the green lights on Niagara Falls on Friday, May 17! People are driving over from the USA, driving down from all over Ontario, and flying out from BC and Nova Scotia. 
Remember to those who are driving to Niagara Falls, there is paid parking all over the place and you can buy a pass for the WeGo buses (formerly Peoplemovers). Parking is usually free by the Floral Clock and the buses should pick up there too. LINK: WeGo

Meeting place for the green lights on the Falls: Table Rock at the Horseshoe Falls. First block of green lights is at 9:00 pm for 15 minutes.  See you there!
Original post on this blog about the green CN Tower: Tower will go green!

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