Lyme angel in Sweden

A young girl in Sweden became another Lyme warrior, and my personal Lyme angel. For a school project about invertebrates,  (animals without a backbone), she didn't choose the popular sea creatures or bugs --- she chose the tick.
She's also the one who took a picture of her text book about ticks sucking blood and being dangerous, able to cause serious diseases, and sent it to her mom to send to me (blog post ; down to the heading about Swedish kids knowing more than Canadian doctors).

She's an outspoken young lady, and I felt she became a Lyme warrior, needing some goodies to show her unity with us. Here she is, sporting a Lyme ribbon, Lyme bracelets with the LymeWalkBrampton.ca and "Lyme Disease" inscriptions, and a Lyme Angel pin for her jacket. Check out her phone cover to add to the whole look!

Bea - thank you. I know there was a tick on you not too long ago, but due to vigilance and a supportive medical network, coupled with information on all levels (not to mention your mom!), you were checked and I'm so grateful you are fine!

Through Bea's confidence and sharing about Lyme, more children in Sweden will probably get the message and be even more vigilant about ticks. 

May the day come when we can expect the same freedom of information and most importantly, support from doctors and health caregivers!

TICK PROTECTION ITEMS IN SWEDISH STORES

Nyree, Bea's mom, and I have been online friends along with some other women, chatting online for years. We all share news, good and bad, health stories, hobbies, activities and interests. 

Nyree regularly sends pictures of printed ads in newspapers and on bus shelters, warning about the danger of ticks, their dangerous bites and reminders to get vaccinated in the spring. 

This year, she found items of interest in grocery stores. One looks something like a pregnancy test, in which a tick found on someone could be tested for infection. The other is a "tick plaster", which can be put on an attached tick and then safely removes "the whole tick". She bought these and sent them across to use at the various displays and shows I've got planned for this summer, starting on May 3 in Burlington. 

Last year, she sent a picture of a full-page ad in a newspaper, with a drawing of a tick attached to skin and the inscription, "Tick bite? See how to remove ticks on Vårdguiden.se "

Soon it will be May, Lyme Disease Awareness month. People in more than 30 countries are doing their utmost to raise awareness, to get people involved, to support those who have been suffering the effects of this disease, and trying to change things for others.

One of the young women I met a few weeks ago at a support group meeting for Lyme patients and friends, had her story published in a local paper.
"A cruel twist of Lyme" tells yet another story, too familiar to so many of us.

May this year be one of major change!

Lyme Mobile on duty

The bright and beautiful Lyme mobile has been seen, been commented on, been photographed and is making a splash for Lyme Disease awareness, despite rain and grey skies!

On Friday, for the opening of the Caledon Chamber of Commerce Home show, the Lyme mobile was brought in and opened eyes everywhere.

On Saturday, we woke up to *snow* --- which brought so many people into the show, gathering around the Lyme booth, signing petitions to ask for change in Canada and picking up information. Many commented on the Lyme mobile they have seen outside.

The Caledon Chamber of Commerce Home Show is the first display for the bright and beautiful vehicle for the 2013 Lyme Awareness effort. People would come in, see the Lyme awareness booth, and immediately comment on the bright car outside. They can't miss it!

Thank you to Brampton Colony Ford for sponsoring this vehicle again this year! Sign Central in Georgetown did a beautiful job "wrapping" the Lyme mobile, and Jenni  is the graphic artist who created our distinctive Lyme bug treading lightly with everyone after him.

This year, it is amazing how people know more, are more aware, are anxious for information, asking for speaking engagements and constantly saying thank you for the brochures and for the booth. They sign the petition and support the cause.

I've been trying all weekend to do an updated blog post, but it has been too busy to sit down and write something. Very grateful for all the interest from so many different people. There will be more speaking engagements and awareness sessions coming from this event.

VIDEO: WORLD-WIDE LYME AWARENESS
We are gearing up for World Wide Lyme Disease awareness in May. Some 20 countries are on board with various projects to create awareness. Lisa Hilton created a YouTube video, using pictures of Lyme patients all over the world, grouping them by country: Why do we need World-Wide Awareness

DO SWEDISH 14-YEAR OLDS KNOW MORE THAN CANADIAN DOCTORS?

The picture above is one that my Swedish friend, Nyree sent. Her 14-year old daughter, who is aware of my battle with Lyme Disease, took the picture of her text book and sent on. Translated, it says:
"The most common are ticks. They suck blood from mammals, for example deer and humans. If you are bitten by a tick, it is important to have it removed as soon as possible. Ticks can spread serious diseases that give muscle pain and meningitis."

Nyree asked: Are Canadian doctors less educated that Swedish 14-year olds??

Profound. Indeed.
Nyree's daughter just became another Lyme warrior! I'm sending her some stuff to thank her, and to encourage her to keep talking to others. Nyree has also bought some tick-related items and mailed them to me - as soon as they arrive, I'll do another post to update.

BRAMPTON LYME AWARENESS DAY, MAY 18
Please share the information with others, who might need the support of Lymies. Also the caregivers - those who look after us, need support, help and a way to talk and be understood. We hope there will be many people to take part in the Walk in Brampton, or other events close to home! If you would like to come to Brampton, remember we start on the Friday already, with a bus trip to Niagara Falls to view the green lights and to wear green and be seen for Lyme. Niagara Falls Canada has been immensely helpful, proclaiming May as Lyme Disease Awareness month and with Niagara Falls going green on May 17. People are coming down to stay in Brampton to be at Niagara on Friday and attend the walk on Saturday. it is a long weekend, after all!

LINKS TO SHARE:

1. Resident gets ticked off
2. RBG Home & Garden Show, May 3-5, 2013, RGG Centre, Burlington www.rbghomeandgardenshow.com
3. Dr. Ernie Murakami about Lyme Disease, Whitby, May 10, http://www.lymesavers.ca/events/a-night-with-doctor-murakami 
4. LymeSavers Walk / Run, Whitby, May 11, http://lymesavers.ca/ 
5. Green lights on CN Tower for Lyme Awareness, May 11, meet  after dark in the park opposite the Tower, see LINK and graphic http://www.cntower.ca 
6. GREEN LIGHTS ON NIAGARA FALLS: May 17 - bus from Brampton to Niagara Falls at 6 pm, returns before midnight, see info and  LINK 
7. BRAMPTON LYME DISEASE AWARENESS DAY: May 18,http://LymeWalkBrampton.ca  

Lyme awareness goodies are here!

Many things are happening for this post! I do hope I don't confuse anyone. Please share this post with others in the area, who might not know about happenings that they might want to attend. If you notice something wrong or forgotten, please let me know so I can update or add.


SUPPORT GROUP MEETING
Those Lymies around the area who don't know yet, please remember the Support Group meeting in Nobleton on Thursday, April 18. It is a lovely little town, worth a visit, and the address is just north of King Road, west of #27. Here's a map: http://goo.gl/maps/Tef6Q

The new Lyme Mobile will be on display that evening!

I'll bring some registration forms and waivers for the Brampton Awareness Day on May 18 as well if you would like to complete them. If you've downloaded yours from the website, please print and bring along; I'll collect them and give you your pledge forms then. If you can let me know so I'm sure to bring enough, that would be great.

AWARENESS PINS AND RIBBONS
Those who have been waiting to know about the Lyme Disease awareness items  for the LymeWalk in Brampton -- they are here! Below is a combination picture of some of them. Three different awareness pins and a key ring will be available for purchase as part of the LymeWalkBrampton fundraising effort and for raising awareness everywhere. Last year I only had a few items and people were happy to get their hands on them. The silicone bracelets and satin ribbon with small gold ribbon pin will be used for the people taking part in the BramptonWalk on May 18.

If anyone in Canada would like to get a few of these items, please contact me (link above) to say which item(s) you would like to purchase, and how many. These are small items and should not be difficult to send by mail, for a dollar or two depending on how many items you want. Of course, these will also be available on May 18 if you want to pick up some then.

GREEN T-SHIRTS - yes, I still have some left from last year. They will be at the Nobleton Support group meeting, along with some of the pins and ribbons as shown above if you wish to purchase some. All funds coming in, will be either used immediately for printing materials for the Brampton Lyme Event, or donated back along with the other fundraising.

CALEDON HOME SHOW
This coming weekend is the Caledon Home Show and I'll have a table with flyers there as well. Some friends will probably stop by to help run the table, or sometimes just the flyers might be there as we take a break.

RBG SHOW, BURLINGTON
May 3-5 is the Royal Botanical Garden show in Burlington. CanLyme booked a table there and I'll be there, along with Jewel, to hand out flyers and talk to people about Lyme disease. Please let others know if you can! More info to follow next week, but our table will be in the foyer area on the way to the auditorium.

**Upcoming shows or tables**

1. Support group meeting, Nobleton Library, April 18, 7- 9 pm 
2. Caledon Home Show, April 19, 20, 21 at the  Albion Bolton Community Centre, on the hill http://caledonchamber.com/articles.php?id=9309
3. RBG Home & Garden Show, May 3-5, 2013, RGG Centre, Burlington www.rbghomeandgardenshow.com
4. Dr. Ernie Murakami about Lyme Disease, Whitby, May 10, http://www.lymesavers.ca/events/a-night-with-doctor-murakami 
5. LymeSavers Walk / Run, Whitby, May 11, http://lymesavers.ca/ 
6. Green lights on CN Tower for Lyme Awareness, May 11, meet  after dark in the park opposite the Tower, see LINK and graphic
7. http://www.cntower.ca 
8. GREEN LIGHTS ON NIAGARA FALLS: May 17 - bus from Brampton to Niagara Falls at 6 pm, returns before midnight, see info and  LINK 
9. BRAMPTON LYME DISEASE AWARENESS DAY: May 18, http://LymeWalkBrampton.ca  

The elephant in the room

Done something I've really wanted to do: Met the oldest roadside attraction in America! And I want to use her as part of the Lyme awareness process if possible.

Meet Lucy, the elephant, who is eight years older than the Eiffel Tower and five years older than the Statue of Liberty! In the picture below, I'm standing at her foot. We were inside and right to the top, yes. Lucy stares out over the ocean in Margate, south of Atlantic City.

There are still people every day who write emails, asking for help, support, answers, advice or contact because of what they ran into with Lyme disease. And healthy people ask every day why this is happening, why a legitimate disease can't get the help they need to have a better quality of life. Simple. Or it should be.

A Swedish friend sent a link to an article in a newspaper. You can click and then run it through Google Translate. It won't translate perfectly, but we can get the general gist. In Sweden, there are reminders every spring to get vaccinated against TBE (tick bite encephalitis). One of the sentences reads" "Sometime in August 2008, I was assaulted by the vilest of God's creation."
http://www.aftonbladet.se/nyheter/article16571800.ab

May this year be a total groundswell in awareness and help for those of us with Lyme Disease!
Article online in the Brampton Guardian 

Sorry for the short post --- two months antibiotic free and so far so good! The hip pain has mostly disappeared, or maybe I convinced the brain to ignore it while doing a lot of walking and trying to stay active!

Toronto's CN Tower will be green for Lyme Awareness!

Remember the blog post on March 7, where I announced about the green lights on Niagara Falls? I said there is another Canadian icon waiting in the wings, but we were not allowed yet to announce what it was. Today it was finally confirmed, but we've changed the date to coincide with WorldWide Lyme Disease Awareness and the lymeSAVERS Lyme event in Whitby on the same weekend.

CN Tower lights will be green on the night of May 11!

People who can't get to Whitby, Niagara Falls, or Brampton for the other Lyme events might be able to take public transport or somehow get to the base of the CN tower on May 11. There is a wide open space, it is close to Union station and we could really make an impact there. Hopefully there will be media interest.

ABOUT THE CN TOWER
For those elsewhere who might not know, the CN Tower is an icon, and a well-known part of the Toronto skyline. The CN Tower held the record as the tallest building, tower, freestanding structure for over three decades.  It remains the tallest in the Western Hemisphere.  Guinness World Records over the years have included:

CN Tower from Lake Ontario, with the Kajama in the foreground.

• World’s Tallest Free-standing Structure (1975)
• World’s Tallest Building and Free-standing Structure (1996)
• World’s Tallest Building (2003)
• World’s Tallest Tower (2007 – 2010)

Since then, the Tower has added the following distinctions:
-World's highest 'wine cellar' - 351 metres (1,151 ft.)
-On November 8, 2011 EdgeWalk at the CN Tower was presented with the Guinness World Record for the “Highest External Walk on a Building”.
                                                             Read more ...

WARNING TO ONTARIO'S MINISTER OF HEALTH
If you didn't get to hear the interview on AM740 today with Dale Goldhawk talking to CanLyme's Jim Wilson, you can hear a podcast online at this LINK. Jim was discussing the letter sent by a lawyer (Paul Haefling) to the MOH, the premier and other officials, which warns of "gross negligence" and the fact that the warnings posted by Canada Health were ignored.

The letter, dated March 11th, 2013, was sent to the Minister of Health, the Premier, the Attorney General of Ontario and others. It states that the Minister of Health office is ignoring Health Canada’s warning from September 2012 about poor testing, in that their department has published guidelines that entrench the very same tests into the Ontario lab system, completely ignoring Health Canada’s warning which came ahead of the Ontario lab guidelines.

1) Current tests for Lyme disease miss the diversity of the genus of Lyme bacteria (shown in the early 1990′s);
2) Most species within the Lyme genus DO NOT cause a rash;
3) Chronic Lyme disease is a real and serious entity misdiagnosed as everything but Lyme disease;
4) Lyme is not rare in Canada, but is rarely diagnosed;
5) Lyme is everywhere that birds fly. 

Read or download the complete letter by Paul Haefling.
Read the summary of the letter on CanLyme's website.

Thank you for reading this blog!

Bus from Brampton to Niagara Falls, May 17

At least a dozen people said they would like to be on the bus on Friday evening, May 17, to view the green lights on Niagara Falls. There are 48 seats in total. With the people who are confirmed to go on the bus, it means there are still about 36 seats available.

The bus leaves Brampton at 6:00 pm on the Friday evening and should return before 11:00 pm to be back in town before midnight. You can  leave your car at the meeting place to pick up again after the trip. I suggest we meet around the Freshco area at Bramalea City Centre. See the map at http://goo.gl/maps/UGZsj

If you would like to secure your spot on the bus, please send me a cheque for $10 (Canadian), or use this PayPal button if that's easier. I'll pay for the bus with my personal credit card. PayPal, however, takes a fee of about 59c on each $10 transaction. If you could add those cents, it would be appreciated since 48 x 59c might make a bit of difference to the total in the end. To make arrangements for cheque payments, just hit the Contact button at the top of this screen. If you receive this blog via email, you might have to go to the blog on the internet: Meerkat's Heap

I'm in conversation with several high-profile people in Niagara Falls and have confirmation that MPP Kim Craitor, who is supportive of our plight regarding Lyme Disease, will be attending. 

GREEN LIGHTS ON THE PEACE BRIDGE, Fort Erie

Are there people in Buffalo, NY or the Fort Erie, Ontario area who are planning to be at the Peace Bridge on May 17? The green lights will shine on the bridge from dusk to 1:00 am to help raise awareness about Lyme Disease. I'm not aware of anyone arranging for a group to meet at the bridge, on either side or in the middle. If you would like to arrange such a meeting, please contact me if you want green T-shirts. I could probably order a bunch extra for the Brampton Lyme Disease Awareness Day on May 18 and ship them to a central person who can distribute them and collect donations, if any, to cover costs and shipping.

Anyone interested to arrange a meeting or meetings around the Peace Bridge on the evening of May 17, 2013?

Other links and posts: 

• Niagara Falls will go GREEN for Lyme Disease Awareness!
• Jim Wilson (CanLyme president) and Dr. Ernie Murakami on the Niagara Bus
• Brampton Lyme Disease Awareness Day, May 18, 2013