Lymies, an Ontario doctor needs education ....

Lyme patients, friends and caregivers, please unite! You might have seen a TV excerpt about Lyme Disease last night (July 18) on CHCH out of Hamilton, Ontario.  Anita, another suffering Lymie (blog below) with currently no hope of getting treatment in Canada, gave an interview to Maria Hayes of CHCH.  They also interviewed Dr. Douglas Sider to get the Public Health Ontario perspective.  His email  address is below, and underneath that I'll quote the letter from Jim Wilson, president of the Canadian Lyme Disease Foundation in response to his statements.

Here are the EXACT WORDS HE USED. My friend Kim (see previous blog entry) used her PVR and made sure she wrote it down word for word.   His comments were the following:

"We are still learning lots about Lyme Disease. It's an infectious disease that we call emerging.  The validated blood tests we use here in Ontario are very effective in picking up the fact that you have the Lyme Disease diagnosis and the treatment is very effective."

There are also a number of physicians not so much in Ontario but across the border who are willing to subject people with ...to my mind are questionable diagnosis of chronic Lyme Disease to prolonged antibiotic therapy and we've got good evidence of the risks versus lack of benefits."

Doug Sider
Medical Director
Communicable and Infectious Disease
+1 (647) 260-7313
doug.sider@oahpp.ca

Lyme friends and caregivers, please send this doctor an email and let's try to educate him with the facts and realities of living with long-term Lyme Disease here in Ontario and also in the rest of Canada. You know my story, about being dropped from treatment in Canada and being back in ER within three weeks. Treatment had to start all over again in the USA, since my body relapsed because treatment was halted too early. I'm not alone in that situation. 

 

Jim Wilson at the Brampton Lyme Walk

Jim Wilson's response to Dr. Sider: 

Dr. Sider, Your embarassing (for government)  interview regarding Lyme disease 

Dr. Sider,

You have just misinformed an unsuspecting Ontario population by going public on CHCH radio in Hamilton with these statements quoted below this paragraph, and as you see we require answers.

"We are still learning lots about Lyme Disease. It is an infectious disease that we call emerging.  The validated blood tests we use here in Ontario are very effective in picking up the fact that you have the Lyme Disease diagnosis and the treatment is very effective."

There are also a number of physicians not so much in Ontario but across the border who are willing to subject people with ...to my mind are questionable diagnosis of chronic Lyme Disease to prolonged antibiotic therapy and we've got good evidence of the risks versus lack of benefits."

In your position representing the Ontario government as a taxpayer salaried Medical Director, Communicable and Infectious Disease, Ontario Agency for Health Protection and Promotion you have just intentionally misled the public regarding a potentially deadly illness.  You are not an uneducated man in the field of Lyme borreliosis or you would not have been put forward to address the issues. 

What was the validation process of your testing and more importantly, how are your tests able to detect the diversity of Lyme bacteria shown to occur in Canada when no other two-tiered serology employed in Canada or elsewhere in the world has that ability?  

Considering the potential harm this may do to many Ontarians who have just heard you, will you provide us immediately with supporting documentation in the form of peer-reviewed, evidence-based research that substantiates your confidence in the "validated" blood tests.  

Also, who "validated" the tests?  Where is this published, as it must be to form public health policy?  We don't want the written policy, we want the science validating your comments and tests.

Obviously a man in your position is aware that Health Canada published a warning last fall about Canadian tests not being able to detect the diversity of Borrelia known to occur in Canada, more and more of which are becoming known to be human pathogens.

Ontario tests are 100% incapable of detecting Borrelia miyamotoi, andersonii, hermsii, americana and many other strains/species that are far enough removed genetically from the strain used in your confirmatory western blot. Many of these are known to exist in Canada so under whose authority have you informed Ontarians that your tests, "are very effective in picking up the fact that you have the Lyme Disease diagnosis"?  Is this an official government of Ontario position?

What evidence do you have that all those thousands of Ontarians who have left the province to get proper diagnosis and treatment are at serious risk? You publicly stated they were at risk, the public requires the proof for informed consent decisions. 

Has even one patient in Ontario been given the evidence to make an informed decision on the risk to benefit ratio? Not at all that we are aware of.

How does your alleged risk of longer term antibiotic treatment compare to the many serious drugs prescribed by Ontario physicians to manage symptoms, one by one, drug by drug, as opposed to addressing the cause of their overall state of health?  How does the risk of longer term antibiotics stack up to Tylenol for example?

Why do you want to keep Ontarians who are chronically ill home in Ontario with no confirmed diagnosis, or another diagnosis due to a negative Ontario Lyme test, but medicated to the hilt with everything but something that will treat the cause of their illness?  Clearly your message signaled them not to leave.  It is not for the greater good, of the public and the related antibiotic resistance issue, while food farmers still use by far the largest amount of antimicrobials including antibiotics.  That certainly can't be an argument of yours?  The only benefit of keeping sick Ontarians at home appears to be in favour of the pharmaceutical industry... we simply state the appearance of what is before us.

What has the province done to measure the improvement of the patient's quality of life after longer term antibiotic intervention (please don't provide us old research that has long since been discredited because they defined the wrong patient groups by the very design of the study using the same limited serology), and, what has the province done to measure the reduction of the need for these out of province patients to be on 'daily symptom management pills for the rest of one's life' paid for by the Ontario taxpayer in an ever increasing amount? 

These public comments you made are very serious statements coming from a person who people expect honest, complete information from, so those statements require very solid evidence. 

In truth, it is our opinion that you have no idea how many or all those thousands of people tested for borreliosis in Ontario in the past 3 decades actually do have the disease because your tests have always been far too narrowly powered.  All research indicates we are correct.

We expect your reply shortly with the supporting evidence because the province through you has just made some very serious statements that will affect the health of Ontario residents.

By way of this letter we are asking the Ontario Premier to intervene by implementing a mechanism whereby Lyme borreliosis patients and their experts have an equal voice at any policy/guideline making level and that current policy and guidelines be immediately thrown out and reworked with our input.

CanLyme can provide expertise at any level.

Regards,

Jim Wilson
President, 
Canadian Lyme Disease Foundation

www.canlyme.com

 ANITA's BLOG LINK ABOUT HER LYME JOURNEY: http://lymefacts.wordpress.com/

Meeting today with Member of Parliament, Kyle Seeback

Posting after a full month of hiatus from the blog, dealing with a heap of extra work, overtime, trying to learn new stuff, and working on a new international project. Thank you if you still stopped by the blog despite a lack of updates.

Today's heat wilted us again, added tornado warnings for an area around us, and had everyone seeking the coolness of air conditioning. I've got pictures taken inside the car, with temps registering 39 C (Monday) and 44 C (Tuesday). All our igloos have melted .... But we are promised relief in the next few days.

We had another form of relief as well, during a meeting this morning in Brampton, Ontario. I'm not at liberty to give all the details yet, but there will be follow-up very soon, and I believe that promise!

Thanks to City Councillor John Sanderson, who arranged for a meeting with MP Kyle Seeback, five of us met today to discuss the problems around Lyme Disease, lack of doctors to treat, patients being set adrift and not enough warnings put out for the general public. The bottom line is still that early diagnosis and treatment usually help to control the disease. If allowed to spread, the cost on all levels can be debilitating.

John Sanderson, me, Kyle Seeback, Rossana, and Kim

Mr. Seeback was very supportive. He knew a little about the plight of Lyme patients, but was suitably shocked and upset about the fact that we are not able to get treatment in Canada, that doctors are sent "on vacation" and that we have to seek help elsewhere. He agreed that we have to get the Federal government on board. He was also aware of the Private Member's Bill being brought forward by Elizabeth May to ask for a National Lyme Disease Strategy.

Rossana, who lost her husband to Lyme Disease and has been an outspoken advocate for years, talked about the new foundation she founded in his name and about what is being planned there. The hope is that the research facility will be open in 2015. [ If you missed that post, here is more, under the heading "New Foundation for Vector-Borne Diseases".]

Kim and I have both been sick with Lyme Disease for years, visited many doctors and specialists in Canada and found no help or correct diagnosis. Eventually we both had to seek treatment in the USA, pay out of pocket, spent years in treatment and still have to deal with the devastating results of the disease running rampant in our bodies for years before that. We are both now in remission. Rossana, Kim and I all and receive emails every week from people who are newly infected with nowhere to turn.

This will stop. But it might take Superman to help us!

Young Evan in his Superman shirt, admiring the Lyme Mobile

BREAKFAST AT APPLEBEE'S on SATURDAY
If you are in the area near the west end of Toronto, Mississauga, Etobicoke, Brampton, Caledon (Counties of Peel, Caledon and Halton Hills), please let me know if you still want a ticket for breakfast at Applebee's on Saturday morning! We have the place to ourselves between 8 am and 10 am. A ticket will buy you a short stack of pancakes with trimmings, bacon, coffee, tea or juice. For each ticket sold, 70% will be donated to the cause of Lyme Disease awareness. Email me through the Contact button above; there are still some tickets available.

Of Prayer Shawls, Doxycycline and Vets

Prayer Shawl for a friend

Yesterday I was privileged to pass on a blessing to another friend in the form of this lovely shawl. Prayer shawls - I've found warmth, support, love and emotion in the shawls given to me.  There is one everywhere I go, ready at an instant's notice. The people who gave me the various shawls I use and have used, are special, close to my heart, supporters of my life. It is a gift to share with others, through the many people who spend hours knitting and creating these unique gifts.  

Prayer of Blessing: May God's grace be upon this shawl...warming, comforting, enfolding and embracing.May this mantle be a safe haven... a sacred place of security and well-being...sustaining and embracing in good times as well as difficult ones.May the one who receives this shawl be cradled in hope, kept in joy, graced with peace, and wrapped in love.Blessed Be!

 © 2013 All rights reserved.

By: Janet Bristow - 2000

  www.shawlministry.com

The next bit of this entry is a whine ... so please feel free to skip and start reading at the next bold line! 

My apologies. Disconnect. I'm feeling totally adrift and it has been increasing the last few days or two weeks. Noises from the neck again, which is stiffening up some nights. Sleep problems. Weight ballooning again. Had some weird bruises just appear. Hip pain. Nothing serious or like they were at the height of my Lyme fight. I've been off antibiotics now since February 8, was declared "in remission" on May 8. Everybody tells me how good I look. But I feel as if I'm no use to anyone and as if doing anything is a huge stretch. I try to walk every day, keep moving, even if just up and down stairs several times, but mostly outside to the mailbox on the corner and a bit down the street and back. 

Daily emails come in from people who have been bitten, or sick, or looking for treatment, desperately trying to find a doctor in our area. I'm so sick-and-tired-and-ashamed to write over and over again, there are no MDs available, and all the LLMDs are in the USA. Ours have been pushed out. And then to face the inevitable, "But why????" I'm ashamed because I've had treatment and that there's no easy answer to give to others who are struggling.  

My apologies, my good friends, if I'm absent or seemingly aloof. Don't mean anything by it but am helpless to stir myself. Just find days slipping away, disappearing while I sit and do nothing. Sit in the sunshine on a parking lot. Sit on the bed and almost watch TV. Sit in the car and watch the clouds. Sit with the laptop and look through hundreds of old pictures, but not reading emails or facebook, and not catching up with things like housework. Thanks to the friends who want to go out and meet for coffee, or enjoy a newly discovered place, or spend time at a friendly ball game, or plan to go away for a girlfriends' weekend. The joy I have while being with you, can never be explained. Thanks to my family for not moaning about the lack of vacuuming and dusting. 

Thank you for that and slap me out of my stupor somehow! 

Two upsetting articles to share

Maybe you know about this, maybe not. The first article here below really upset me. I checked with my pharmacy and found that the general price for Doxycycline in our area would be just over $1 per capsule ($82 / 100). A friend in South Africa checked and said the price there is about R25 for two weeks' supply, which translates to about $2.56. 

Now read this: Doxycline prices in the USA suddenly jump through the roof.
Article: Summer is Lyme Disease Season. The price of the drug to treat it just exploded.

Infection of Lyme disease through blood transfusions have long been a question I've asked, but it has always been waved away. A few months ago I spoke to a woman from the Canadian Blood Transfusion Clinic about Lyme disease. She said that someone who knows about a tick bite, should not donate blood for a few weeks, but can donate after 6 months because "the infection would then have been cleared from their system."   

I've now been sick since 2007, and been treated for very much longer than 6 months. Some people have been treated twice as long as I have, and they are still not well. I refer again to the Embers report which was mentioned on this blog in the post from October 25, 2012. 

Quote: "A new study by Drs. Monica Embers, Stephen Barthold and colleagues has found that the bacteria that cause Lyme disease, Borrelia burgdorferi (Bb) persist in monkeys after antibiotic treatment."  Read more 

Ehrlichiosis, Rare Tick Infection, Spread To 9-Year-Old Boy Via Blood Transfusion

 Article in the Huffington Post 

Warnings about tick populations exploding in the USA -- to vets, but not to humans? And any articles I've seen, even talking about Lyme disease, gives information about how to prevent tick bites but say nothing about how to find treatment. According to emails I've received, doctors are still showing patients the door when they come in to ask about Lyme disease. One man said he went in with a bulls eye rash and the tick still attached but he was assured it was nothing. 

Tick populations to explode in 2013

Quote: "For a number of reasons, tick populations in many areas of the country will likely explode this year, according to several parasitologists, so veterinarians should be vigilant about discussing preventives with clients."

Is 2013 the year of the tick?
Article found on the website of a vet's office in Etobicoke, near Toronto in the GTA - once again warning pet owners  LINK


Please be careful and vigilant without being paranoid!  More information always available from the CanLyme website, from the LDAO and other links on those sites. 

Worldwide Lyme suffering

May is over. This was one of the busiest but also most rewarding months, creating awareness around Lyme Disease. People from all over the world took part in events, told their stories, stood up and asked for support, better tests, the right to treatment and the right to live their lives. I'm so grateful to have met so many people, working together, giving what time and energy, ideas and support they could muster so that others would be spared the pain so many of us had to live through.

Charlotte Therese Björnström from Sweden, who has suffered from this awful disease for 25 years, put together a video from footage, pictures and sound clips people sent from all over to create a small glimpse for others to see and share. There are voices from Australia, USA, South Africa, Spain, Switzerland, Finland, Germany, Canada .... translations are part of the film. For your own education, please take twenty minutes to watch it and to share with others:



The original music used as soundtrack in this video was written and performed by a young woman battling Lyme Disease herself. She is 19, lives in Australia and has been sick for ten years -more than half her life. Her name is Emily Madden*.




Right These Wrongs
We've been through a lot, we've been through it all, 
One day we stumble, the next day we fall.
Like anyone else we had dreams. 

Our lives were alight, once burning bright. 
Now fading each day is an uphill fight. 
And like anyone else, we want life. 

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall. 
To regain our lives and to right these wrongs. 

Identities lost, but only for now 
'Cause through all this pain, a strength has been found. 
And with everyone else, we'll be heard ...

Join us one, join us all. Unified we stand tall 
Our voices loud, our resolve strong.
Join us one, join us all. Unified we stand tall
to regain our lives and to right these wrongs. 

We're not disappearing like they want us to. 
We're not going anywhere, anytime soon. 

SPREADING WORLDWIDE
This disease is spreading way too fast, and none of us can understand why we have to struggle so to get tested, diagnosed and treated. If diagnosed and treated early enough, it is completely curable. If left to ravage the whole body, nervous system, and all organs, it takes much longer to get under control. The treatment itself can do damage to the body, just like cancer treatment causes people to lose their hair, nausea and possible damage to healthy cells.

We are not trying to create panic or pandemonium. We want people to be educated and informed so that they can protect themselves. Look at it as giving you a safety belt or a parachute - what you do with it, is your decision.

Next event I'll be handing out information, with the help of friends, will be at Caledon Day on June 15. If you are anywhere near the counties of Peel, Halton Hills or Caledon in Ontario, see if you can drop by. Entertainment is free and ends at 11 pm with a fireworks show.

*Emily's story link: Emily's sick but Australia doesn't recognize her disease

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.

WHERE ARE THE TICKS?
Ticks can be found anywhere that birds fly: in your lawn, on your pets, in tall grass or brush, on logs or
woodpiles.
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.

HOW TO REMOVE A TICK
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 www.canlyme.com/prevention.html

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

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

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 Indigo.ca ; 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.

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. 

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.

Registrations 

 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.
THANK YOU !!

MORE PICTURES FROM SATURDAY

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

CLICK

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 .... 

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 .... http://www.bramptonguardian.com/print/1602126

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!

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!