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.

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. 

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

Removing a tick off a dog this morning

So, here we are in Whitby, sharing a household with Kevin Sherriff and his family, and dr. Ernie Murakami.

This morning, this happened .... I'll let the pictures tell the story!

Little did Benson the dog know last night that he was meeting his saviour! Benson was begging for cuddles from Arno while we were all relaxing after the lecture Dr. Ernie Marukami gave in Whitby. Then, this morning ....

.... Arno found a nice fat tick on Benson's neck. He must have picked it up in his own back yard, since the family was too busy to take him for outside walks this week.

We are used to finding ticks on our animals in South Africa, so Arno and I were quite happy to deal with it. However, the big gun was staying over too ....

... so we called Dr. Ernie downstairs too.

I helped to slip the knot over the tick while Arno was taking pictures.

But the knot kept slipping off!

Try again .... because the tick was so big, there was no need to use the straw to position it. Kit was holding Benson, the dog.

Knot tied around the mouth piece of the tick - be careful not to pull and break the tick .....

I asked Arno to get in there while I took over the camera.

Single knot tied in the thread, ready to pull and get the tick off intact, without leaving any pieces behind. Gently does it. Pull - release. Tug, release.

Arno on the left, Dr. Ernie on the right, Kit holding Benson.

And there it is on Arno's hand. I said they had to bring in the big guns from South Africa (us, we're used to ticks) and dr. Ernie, the TickSlayer, to get the tick off their dog! Do you think we paid for our room and board?

Benson, none the worse for wear after the early morning adventure.

What do you think of that? We told you the ticks are out there ...... this one was ready to deposit anything from between 1000 to 5000 eggs in the back yard. Birds, bats, mice, rabbits, voles - they all drop ticks.

Join us in Niagara Falls on Friday, May 17, as green lights shine for Lyme Awareness, and / or on May 18 in Brampton for a Lyme Awareness and fundraising day! http://LymeWalkBrampton.ca 

Here's the link to the album on Picasa, with captions: Removing a Tick

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!

The ticks of our lives

TICKS IN CANADA
Dr. Robbin Lindsay, a research scientist with the Public Health Agency of Canada who specializes in zoonotic diseases, says the populations of the blacklegged ticks that carry Lyme disease (sometimes called the deer tick) are growing. 
[Marlene's note: Full article is HERE but the link they have to his video doesn't work any more. The link below gives the text of his video interview, though.]

HOW MANY ARE INFECTED?
Lindsay says it appears that while ticks are spreading, the prevalence of Borrelia burgdorferi is still low. In some areas of Canada between 10 and 50 percent of blacklegged ticks are now carrying Lyme bacteria. Read more


TICKS COLLECTED TODAY - pictures
Talking to Wendy from Kingston about all the exciting things happening on the Lyme front. For instance, there is a newly created National Lyme and Associated Diseases group in Canada! The domain name has been registered, but the website isn't up yet. Soon, though, soon. 

However, that's not what this blog post is about. Wendy, who has been sick with Lyme disease for 17 years, has been checking outside her house for ticks. Today she dragged a white cloth outside for just ten minutes .... and this is the "harvest" she collected below! 

She has the fabric inside double ziplock bags to be sure they can't escape. Within minutes the ticks started mating inside the baggies! Clearly nothing puts them off and nothing stresses them. 

Wendy took a picture with a Canadian coin (small 10c) to show how tiny the ticks are. And these are adults - you can at least see them where the nymphs are so tiny that they are hard to spot. 

This is scary stuff. These ticks were found in a residential area, in a back yard of an ordinary house.

But, just to freak out some people --- below is a picture I took in 1996 when we were still living in South Africa. The hand belongs to my then 6 year old son, Theo. We were walking around the school area where they had some of the typical large tortoises. The ones around there were around 50 pounds in weight or so and can live for 100 years or longer. Ticks love to bite them. They hide themselves in the neck fold, where the poor tortoises can't reach to get them off. The ticks drink their fill and then drop off the host. This is what Theo picked up - a resting tick, waiting to digest his meal before finding another host. 

What do you think of that size tick then?

NEWS: On Thursday, I have to delegate to the Regional Councillors about Lyme disease. Hope to update as soon as it is done.