We had another table to give information about Lyme Disease. This time, however, it was disappointing. We found the arrangements for the event badly communicated, very few signs, no information of where we'll be setting up (grass or cement), and nobody in the park apparently aware of what was going on or where. Sue came to help out, and Arno brought extra water. He and Joe enjoyed some beer and wings.

When the wind came up and kept blowing our tent and the flyers every which way, we took it down and just sat in the open. Very few people came to ask information, or even make eye contact. They were clearly there to eat and drink and not listen to us trying to talk over the music!  Most didn't seem to notice the beauty of the moon raising - the second one in the same month, so a Blue Moon. But it was pink when I took pictures.

 There was some guy doing a Waldo impression and pretending to be funny, but we thought he was not at all funny, bad taste in jokes (among others, trying to make fun of the shooting at the Batman movie) and then he wondered why nobody was laughing! 

However, it was not all bad, not by a long shot. Spending time with friends who give so generously of their time in the quest to spread awareness of Lyme Disease, and to support me in the process, never is a waste of time.

We made two fabulous contacts -- one an MP who gave permission that we could drop by the office to leave CanLyme brochures, flyers about Dr. Murakami coming to do a series of 6 talks at different venues, and copies of the petition to ask for a National Lyme Disease strategy!

That was not all. Another girl saw the CanLyme banner and came over to talk, saying they want to start a wellness centre at a clinic to also be able to help and support people with Lyme Disease. I offered that Jess and I will go, of course. What a wonderful opportunity!


Oh yes and I fell. Threw the rough tarmac with a person. No idea how I did it, or how I landed. Right hand has a gouge and is swollen, left knee looks like a blue moon with the deep bruise blooming over it, and the right foot inside is scraped. Back must have been wrenched. But it could have been worse. Nothing broken!

DOWNLOADS:

• Updated flyer with all six places where Dr. Murakami will be speaking (Fort Erie, Burlington, London, Brampton, Kingston, Toronto) in September 2012. Please post where you can, or give to contacts you might have at pharmacies, doctor's office or other health care workers. Of course people with Lyme or caring for someone who has Lyme are invited as well!
• Brampton Fall Fair -- it goes over four days from Sept. 13-16, and isn't just for farmers! Anyone with hobbies like photography, knitting, sewing, drawing or painting, gardening, baking, canning and more can enter something in the fair. It is great fun to take part, to join in and to just be there. There are flyers for the Baby Show, the Classic Car show, the Fair in general, and more. LINK

Another presentation done

What a glorious day! Jessica asked me to help her with presenting to a group of health care workers and we are very grateful that they gave us time out of their busy schedule. They were interested and attentive and asked pertinent questions. Each person was also given handouts that Jess had prepared, including CanLyme brochures, invitations to Dr. Murakami's presentation on September 18, an example of Isagenix text results, the Embers study report, and more.

My information board is a little battered after three years of being dragged to various locations as part of the visual material --- but it gets the job done!

Tomorrow I believe Kim is doing a presentation to a clinic in Orangeville. On Friday and Saturday there is the Wingfest in Brampton where I'll have a table and flyers, with the help of friends who give their time.

The word is really getting spread. As long as people hear and act on protecting themselves and their loved ones, we have succeeded.

On another level! Made and bottled some more ginger beer to hand out as gifts to friends. I should immediately get another batch brewing, perhaps. So good that people who give me their time, enjoy the things we make because there is no way I can pay them for their gifts of time, care and concern. What a blessing to be surrounded by such a network of care!

“Happiness is not the absence of problems but the ability to deal with them.”
~ Author Unknown

Tomato stew - lots of it!

We went to the farmers' market this morning and bought half a bushel of fresh tomatoes, a basket of onions and some button mushrooms. The following pictures were taken with the Blackberry as we went along, and the write-up was done in between.

Garlic peeler, grating dish and brush

We had fresh garlic from our back yard and a big zucchini (marrow) from a neighbour. We figured we might as well add more veggies in the stew while we're about it and while everything is fresh! As for a recipe - I've been making this for so many years that there is no real recipe to follow, but I'll try to give an idea at the end of this post for those who want to try. We usually make smaller batches, though.

Started off with chopped onions, add the garlic and soften. Then we peeled and chopped the zucchini, adding to the mixture. Added the chopped mushrooms at a later stage.

We've been chopping and peeling and stirring for a good two hours! The house smelled lovely with the addition of thyme, freshly grated nutmeg, white and black pepper. We only added a small amount of sea salt, and I always add some sugar or Xylitol, which I've been using with success since all sweeteners had to be cut out due to the strict medical food restrictions. More tomatoes were sliced and added to the pot, until it was as full as you will see in a later picture.

We haven't done this in ages! Read: pre-Lyme Disease.

The stew is to be bottled and some to be frozen. Mason jars (canning jars) are wonderful to use for freezing anything from leftover soup to meat or sauces and gravies. We use the tomato stew as the base for everything: meat or pasta dishes and casseroles, soups and chili, lasagna or spinach stew.

The picture with empty wine bottle is just to show the scale of the stock pot. It holds something like 12 or 14 litres and was almost full but we had to leave room for bubbling. Use a good wooden spoon to stir, and if needed, put a lid on the pot to stop splatters, but leave room for evaporation.

Other pics were taken during the whole process. Just a few are uploaded here.

Tasted the flavour and adjusted, although we always add flavouring later, depending on how we use the sauce in dishes. Scooped out batches into a smaller bowl and used an immersion blender to create a thick sauce before bottling.

We bottled 30 small jars of 250 ml (1 cup) as well as 5 larger jars of the sauce. What a joy to have for winter! For labels, I just printed some simple labels with our names and the month and year, as well as what to use the sauce for.

Fruit of our labour! Lots of jars of sauce

Best is knowing what is in the sauce, without any extra chemicals.

RECIPE FOR TOMATO STEW 
The basic stew just asks for onions and tomatoes. If possible, use Romano tomatoes since I find they have more flesh. 

• Slice 3-4 medium sized onions and fry to soft and yellow in a bit of coconut oil, butter or olive oil
• Slice fresh tomatoes and add to the onions until the mixture is more red than white, about 2 pounds (1 kg)
• Add some fresh garlic if you like
• Add salt, black pepper and a little bit of sugar / sweetener
• Add herbs of your liking. We add nutmeg, thyme, rosemary. 
• Stir and keep cooking until the stew thickens
• Scoop into jars, baggies or bottles and freeze or keep in the fridge

 Additional ingredients or preparation:
Use the sauce as is or use a food processor or wand to create a smoother sauce before bottling.
Add any other sort of veggies you might have during the cooking process, like mushrooms, Swiss Chard, spinach, celery, etc. Fresh or dried herbs like basil might be added to some batches and label accordingly.

Have fun and hand out or take along as hostess gifts. 

Free Lyme info sessions in September!

Really exiting news is that the LDAO, the Lyme Disease Association of Ontario, arranged for information sessions so that people could ask questions, meet others and get support when they or their loved ones are dealing with Lyme Disease. We hope that health care workers, pharmacists and physicians will also attend some of the sessions if they can.

Dr. Ernie Murakami is a man I've met personally and you can read more about those meetings by searching his name in this blog. I have immense respect for him and his knowledge about the disease, his tireless education and the time he spends to help others. If you can attend any of the sessions, please do. You won't be sorry!

Don't click on the thumbnail to download; find the link at the end of this paragraph. It will be in mid-September, on the 14th in Fort Erie, the 15th in Burlington, the 17th in London and the 18th in Brampton.
Download information sheet from HERE, or go to the LDAO website to download from there. 


Book online for Brampton
I'm especially involved in the Brampton event and have created an online invitation for people to "book a seat" so to speak. There are no assigned seats; it will be first come, first served, but the venue has excellent acoustics. It is free to attend any of the sessions, but we hope to receive some donations either online or at the door to help offset travel costs. You can refer family or friends to the online invitation as well. When registering, the seat count will adjust and you can also invite others from there. Whatever is easy for you! Online registration for Brampton only HERE. 

Brampton Flyer

Don't click on the graphic to download, it just shows what the flyer looks like.
The green thumbnail graphic shows a flyer created to help promote the Brampton event, if you wish to invite friends or contacts or put up posters at your doctor's office, health care workers, clinic or pharmacy. Remember to ask permission first!

The flyer is in PDF format and should open on most computers, as well as print on most printers.
DOWNLOAD 

Please share this information or blog post with others, on Facebook, Twitter or wherever you might have connections who might be interested. Even if you can't attend, perhaps you want to donate a few dollars, wherever you are. The money will all be paid over to dr. Murakami's foundation, to be used for education about Lyme Disease.

Music in the park and missing pants

No, the one has nothing to do with the other ---- they just happened on the same day!

Tonight Joe and I had a table sharing Lyme info at Gage park, during the Inspirational Music in the Park program. It was a great evening!

After all the rain of today, it turned out to be a perfect, green, balmy summer night. The squirrels were running and being amusing, people wandered around, children danced to the music and we could sing along with some familiar tunes.

We had the petition there, and collected 20 signatures from people who were interested and concerned, realizing that anyone is vulnerable to the devastation of Lyme Disease and need to know what to look out for. We shared hints and flyers about how to protect ourselves and loved ones. We are so grateful to Phyllis for inviting us to set up our table, and to Lesley for graciously granting us permission!

Inspirational Music in the Park is the brainchild of Lesley Morgan, and is in its 12th year. More info on http://www.inspirationalmusic.org
Every Tuesday during the summer, join various groups and people for a relaxing couple of hours in the park.

Now, the question of the missing pants ....
Well, the truth is that I misplaced my pants this morning. Really. No, I wasn't in them at the time. But I've noticed (or was told) the last week or so that the old brain wasn't up to speed. The Lyme bugs must be having a grand old time up there again or something. I've been struggling with this for months now, but it seemed to have been slightly better for a while.

The last three weeks, more and more chunks of time went missing in my mind. I could not recall what happened even an hour ago, and couldn't retrace steps to find things I had in my hands or usually handle with a strict form of routine. After we got rained on on Saturday, the deep body chill took hours to go away, and I was missing a chunk of time until after I'd started to warm up again in bed with soup, hot chocolate and an electric blanket. My keys are still missing from then - hopefully they will be found! But it did mean I vacuumed the bedroom properly in the search for them, so not all lost.

Oh yes, the pants. Last night I was doing some laundry, and planned what to wear for today. Clean laundry was put away. When I wanted to get dressed this morning, the specific pair of pants were nowhere to be found. Told long-suffering hubby who had no ideas to offer. I looked everywhere. Of course we had lots of jokes to share about the Case of the Missing Pants!

Yes we found them eventually, hanging innocently over the banister, nicely folded. How on earth did they get there instead of in the closet? No idea. I was sure I put them away. No recollection of folding them on the banister instead.

You might say we all do things like this. Sure, we do. Misplace keys, a sweater or handbag or a pair of glasses.  But it keeps happening more and more, unable to retrace steps and sometimes completely unaware that I've put something where they're not supposed to be until someone tells me.


It is mind-boggling, and more than a little scary - because the more I try to be methodical and in control, the more tiny parts of my mind are slipping through my grasp like little slippery fish.


However, to be graphic about the Lyme stuff, I've not been too well before the wedding and it got worse. Nothing to do with stress, but I was feeling more and more sick, couldn't face food, and would not be able to keep down what I managed to eat. That meant I was also not getting all the meds, since some would be eliminated along with food. Weird rashes would spread all over my body, getting worse with every episode. Turning interesting colours added to the adventures!

The Sunday before our son's wedding was the worst episode yet and I was violently sick. On the Monday I contacted the Lyme doctor in the States, who wrote back to drop all meds until after the wedding and then to start slowly back again.

So, that means for about 3 weeks now I have been off meds, and Arno thought more of the Lyme symptoms were coming back. Especially the malaria-type symptoms are making me crazy with chills, sweats, fatigue, muscle ache and trouble to get to sleep despite using a low dose of Melatonin.The most worrying one is the recurring issue with bigger chunks of missing time. Arno has already taken over sorting out my meds every ten days. His help, patience and support mean more than I could ever say.

Interesting journey! Every day brings something different. But in putting up a booth at these community events, and talking to more and more people who always thank us for sharing the information, handing out pamphlets and being concerned for their welfare, make it all worth while. If even one person listens at each of these events, it means one family who might be able to protect themselves or ask for help if they should need it.

Recommended reading: "Still Alice", by Lisa Genova (or see Goodreads info)

Brampton Farmer's Market

Posted from the market via Blackberry

Come on down!
The Farmer's market is where you can get fresh veg, fruit, flowers, herbs, treats and conversation; live music, community groups and just be outside for a bit.

Yes, it is drizzling or raining, but everything is fresh and clean, the heat is broken and people are out to enjoy!

We have the Lyme mobile at our booth, we have flyers, we have the petition, (see top tab on this blog), and we're ready to share information with anyone who asks or needs it.

See you at the market!
Picture above: Joe, Arno and I are here in our green shirts.

Update from home: It was a great day, probably our most successful outreach and sharing of information! We handed out lots of brochures, answered many questions, talked to concerned people who were bitten this summer, gave information to people who have had known tick bites, and filled pages of signatures for the petition re getting a National Lyme Strategy in place.

We also made contact with several people who invited us to set up a booth at different community events this summer. We have dates into October at this point! Might have to try and buy our own canopy or tent, rather than always borrow one from a kind friend.

More pictures of our booth at the Brampton Farmer's Market can be seen on this link, also showing other pictures of our booths at various events: Our Lyme efforts, 2012

Councillor John Sanderson is one of our supporters

Sent on the TELUS Mobility network with BlackBerry

Wedding whirlwind

My apologies for not posting much lately! We have houseguests from South Africa who came over for our son's wedding on August 4th. It all went well and now we can try to get back to normal!

Our new family member, Jenni

On August 6, friends Joe, Pam and Renie manned a booth about Lyme disease at the Terra Cotta cycle race, and got several more signatures for the Petition.

This coming Saturday, August 11, we'll have a booth at the popular Brampton Farmer's Market. Come see us if you can, buy some fresh fruit, veg or flowers, and enjoy the outdoors, the music, the colours and the people!

Lyme booth at a large youth event

We had another successful day at Le Tour de Terra Cotta, billed as Ontario's largest Youth Event for cyclists. Thanks to Pam, Renie and Joe who manned our Lyme tent on Aug 6th. Also thanks to Kim for arranging to have the Lyme Mobile available to be parked in the parking lot for added attraction.

We talked to a few people that had friends with Lyme disease and they are going to email that info to us. Some thanked us for being there to inform people about the disease and ways to prevent it. Another gentleman said that his daughter (who was in the event today ) was very sick a few months ago and the docotors had tested her for Lyme disease but it was negative. It proved to be something else and she was treated successfully. We handed out lots of brochures and 17 people sign the petition. Thanks to Marlene and Arno that came in near the end of the event and was able to return the borrowed tent we use. It was a great relaxing day in Terra Cotta down near the river.

Pam, Joe and Renie

Thanks all for your help, the hours you give and the information you share. We are a great team!

Our next dates and places to talk about Lyme Disease:

• Brampton Farmer's Market - August 11;
• Inspirational Music in the Park - August 14 (tbc);
• Brampton's Wingfest - August 31/Sept 1 (tbc);
• Canada's Outdoor Farm Show - Sept 11-13 (tbc);
• Brampton Fall Fair - Sept 13-16

Raising awareness today

Posting from behind the Lyme Awareness table on location!

Says friend Joe: "Peel Health should be doing this information and outreach! We should be getting their wages!"

Yeah, right. And piglets might fly, eh?

Activity at our Lyme booth, questions and interest as people walk by. One woman became totally shocked because she is sure she had a Bulls eye rash on her chest last summer! She took a picture of her rash and will send it to me tonight.

This is criminal neglect: People getting bitten or sick and not being made aware of the early symptoms and available treatment.

People are signing the petition, which is good! (See blog post http://t.co/DTRTEpCT to read about the petition.)

The day is hot, but we have a breeze and shade under the tent. People are showing interest when they see the information board. Talking to tree doctors who knew a bit about Lyme, but were shocked about the lack of treatment in Canada.

Every person who hears the message, is one more who can protect themselves and loved ones.

Exciting: set up a talk with a school principal to slot into their Health cirricculum when school starts again. The children are my main concern. They are our future, after all.


Sent on the TELUS Mobility network with BlackBerry

National Lyme Strategy Petition is ready!

** Updated: The links to 4Shared were giving trouble, so please click on link #2 below for another place to find Elizabeth May's petition in PDF format.

***UPDATED Nov 2012: We now also have a petition from Tory David Tilson, M.P. (Dufferin-Caledon)! Let me know if you want a copy to collect and send in signatures. It asks for a National Strategy as well. Email to ask for David Tilson's petition.

ELIZABETH MAY'S PETITION
So grateful and excited! I've been in regular touch with the office of Elizabeth May, MP, about the petition to ask for a National Strategy dealing with Lyme Disease. Since we were planning another information booth at SouthFields Community Day tomorrow, I was hoping it would be ready.

And --- guess what - here it is! Just received after 2pm today, approved by the House of Commons. We can print, have friends and family sign and share according to the instructions printed on every page!
Please link this blog page to your blog or your Facebook, or Twitter, in order for others to share and download the same document. Print, read info and collect signatures. Choose one of the three links that works for you. The first one is on 4Shared for those who have accounts there. The #2 link is on an outside website. The #3 link should be accessible to most others. Hit the green "Download" button on the page that will open: (a) #1 link to Download Petition or (b)  #2 link to Download Petition  or (c) #3 link to Download Petition.

Let's go! If we can use the next few weeks to get copies of the petition signed and sent in, we can hit the ground running in September. Please remember that only people who live in Canada are allowed to sign the petition, but feel free to share with friends who might be in contact with others here!

More awareness: Booth at SouthFields Community Day

Once again we are planning to talk to people about Lyme Disease, share information and pamphlets, answer questions and in general make sure more and more people know how to look out for themselves and their loved ones.

This Saturday, July 14, is the 3rd annual SouthFields Community Day, with booths, food, make-your-own items, demonstrations, a Scavenger hunt to "Find Bob", book signing by an author, and more. Over 30 participants will be showcasing their talents, skills and offerings for our enjoyment and enrichment. There will be classic cars to admire, contemporary art, vocal groups, inflatables for kids, a chance to use a pottery wheel, and more.

We'll have our Lyme Disease table and  canopy tent there if you want to come by to say hi! Perhaps you have friends with questions about Lyme disease. Perhaps you have a story to share. If you know someone with Lyme disease who would like to be part of the tally, please let them look at the tab at the top of this page for more information.

I'll also have samples of real ticks there to show how tiny they are. Don't worry, they'll be very dead!

Click the link on the left

The event runs from 10:00 am to 4:00 pm. In case of rain, everything will be moved into the school. 
Address: SouthFields Village Public School, 110 Learmont Ave, Caledon. Go north on Kennedy road, cross Mayfield road and the new subdivision will be on your right. Click for a MAP

Here is a pamphlet explaining more about the event on Saturday, that you can page through like a book on your computer. SouthFields Community Day 
There is a full page with details about the schedule and times, of what happens when during the day.

Link to large map is on the right

The picture only shows one view. Bigger layout map of the event can be found here - look at the top of the page for the yellow square with label "Lyme Disease", opposite the red Fire trucks area.

We are amazed at how many people come to ask for information about Lyme disease. They know a little, or have heard the word, but they are hungry and eager to learn more. 

With all these events going on, I don't get to update the second part of my story on this blog. My apologies! Thank you for visiting or sharing.

* This September, there will be articles in the SouthFields Village voice about Lyme Disease, both from a vet and from me as a patient.

Grateful for all the opportunities! Please ask if you need to know something. If we don't know, we'll find out.

Posting from Cheltenham Day

Right, let's see how it works to post while on location!

Most important: I've change this blog to have a clear link for those who want to add to the tally of Lyme patients in Ontario. Please look at the top for the correct tab to a page behind this one. 

Back to today's events: Right now we're watching the Downhill Soap Box derby - my first time seeing them live! (Cell picture showing a finish and some of the tents and people.)

We're having great conversations about Lyme disease, people asking questions and taking flyers and contact cards.

Talking to a vet who once again said the ticks are very active this year, but they usually respond to treatment. Their screening tests for Lyme are done in office and takes only fifteen minutes. (That tests for the antibodies and doesn't mean the dog has Lyme.)

He even found a Lone Star tick - those are the ones that can chase after a victim, and that I always thought were only down in Texas!

It is clear that we need to raise awareness in any way possible, keep writing to newspapers even though they have mostly ignored my letters and articles so far, and getting people to talk to their doctors. As dr. Murakami keeps saying, we are facing a pandemic the longer there is no general information posted.

Preliminary future events: talking to a Gardening Club, and talking to a Rotary Club.

Grateful to friend Joe for getting me in contact with so many people!


Sent on the TELUS Mobility network with BlackBerry

Very hot, very busy week!

More things happened on the Lyme front, but the biggest event is that we have had record-breaking heat this week. I feel a bit wilted --- thank goodness that friends invited us for a pool party tonight! Marvellous to cool down a bit. How I love living in this place with the dramatic weather changes in every season! Picture shows the temperature reading on my car's outside thermometer at 3 PM this afternoon, reading 40C:

Last Sunday was Canada Day. Thanks to Joe, we had a table and booth at Downey's Farm Market, where they were putting on a Strawberry Festival. Lots of conversations about Lyme Disease, handing out flyers, answering questions and getting some feedback. MPP Sylvia Jones came by as well for a chat and asked if they could have a picture. We gladly posed for one with her.

This Saturday we'll be setting up a booth at the Cheltenham Day where there will be a Soap Box Derby, Duck races, and more. Every person we can tell about Lyme Disease and how to protect themselves and their loved ones, might make a difference in their lives.

Links:
Cheltenham Day
MPP Sylvia Jones

My Lyme story part 1

[see edits updated June 2020]

When someone asked this week if I was infected in South Africa, I checked the blog and noticed a lack of posts between 2007 and 2010. I was infected in Aug. 2007 and diagnosed in Feb. 2010. I'll try to tell the story here, maybe over a few entries so as not to bore anyone.

I am a Lymie, infected, tested, and originally treated in Ontario, until my doctor had to drop his patients.  I also have the co-infections called Babesia and Bartonella, and probably another one which hasn’t yet been diagnosed but which my current LLMD (Lyme literate doctor) thinks I might have.

My story starts 5 [edited 2020: 12+] years ago. I was bitten in August 2007 while visiting friends near Picton, Ontario, but thought at the time that it was just a spider and popped some antihistamine. My health problems started after that, but it took three years, more than 2 dozen doctors and specialists, several (mis)diagnoses, heaps of medications, visits to ER and walk-in clinics before I happened to diagnose myself after talking to a friend with a Lyme daughter. I went into my old emails and found records of when and where the bite occurred and a steadily growing list of complaints since then. When transferred to a spreadsheet, it made for some strange bedtime reading.

Before that day, I had no idea what Lyme disease was, what the early symptoms are and what the treatment could be. I have educated myself after that!

Since then, I’ve made it my goal to help educate others about the disease and protecting themselves, as well as joining others in trying to get recognition and better tests for Lyme Disease in Canada. We have the right to be treated here and doctors should have the right to treat their patients.

I come from a background in South Africa where you get sick and "suck it up". We only went to a doctor when fever has spiked over 104 for several hours or a limb got mangled and couldn’t be fixed with a Band-Aid and aspirin. Suddenly, since the Fall of 2007, I found myself growing into a "professional patient". Headaches that left me breathless, stiff neck, weird migrating pains, high fever, fatigue, constant flu-like symptoms or colds, jumping muscles, confusion - those were the minor things that kept happening over and over again.

And then there were serious complaints, with diagnoses ranging from possible brain tumour to possible aneurysm to Trigeminal Neuralgia to Temporomandibular Joint (TMJ) Syndrome, Chronic Fatigue Syndrome, Epstein-Barr Virus, a "serious case" of Mononucleosis, Vertigo, a very scary situation where even water couldn't be swallowed without getting stuck in my throat, various infections, teeth breaking for no reason, debilitating fatigue, pain - the list goes on.

Some medication landed me in the ER with side-effects, others made me woozy enough not to be able to drive. Pain caused me to crawl upstairs and curl up in bed, or to only be able to scoot upstairs while sitting down and moving with my hands and arms. Knees would buckle for no reason or stabbing pains shoot through toes, head or fingers. Fine-motor skills were lost and an arm felt like a dead weight for several weeks. Fingertips went numb. Ankle developed a "floppiness" and I constantly fell off stairs. The next thing was probably going to be tested for Multiple Sclerosis, especially since a situation developed where words were "missing" while I tried to talk, or I became confused and ended up going to the wrong place, or falling asleep in weird places.

My brain took the hardest knocking, to first admit and accept something was seriously wrong, and then to convince my doctor (and the many specialists he referred me to), as well as friends and family.

Thank everything that's good for a wonderful husband and family, for supportive friends and a church network, as well as a doctor who believed me when I said something was wrong. He kept saying, "We'll get you well! I know you're sick of being sick."

.... My story was published in a magazine, if you want to read the rest there. Southfields Village Voice, Aug. 2012 edition. [Link to the magazine does no longer exist, but here are jpg images of the article and front page of the magazine. ]

I heard my son's cell phone ring with a tune I couldn't identify. He brought up a YouTube video and said I have to just listen to it - hear that Cello! That from a computer nerd who doesn't play an instrument ... But then, as a 2 year old boy, we were at a picnic and found him with chin in hands, listening to an orchestra playing in the park. The books are part of his library that he's been building up for years. 
The picture above was created quickly, using the sword and title from "Game of Thrones" and a picture taken a week ago, adding some shadows and blurs to make a collage that would capture some of my feelings.

Notes: The sketch of the cello is from deviantArt by Master-Chi.

Red heart is a card I made before Lyme, making quilled flowers to create a spray of Lilies-of-the-Valley.

YouTube link to Game of Thrones is below to play if you're on the blog, or the link 

 

The Bill was presented!

So many things happening at the same time .... so many people working together on all levels to bring awareness and information about Lyme Disease!

Letters to MPs and MPPs (let's hope they respond and react), invitations to speak at different groups, letters to newspapers, outreach at various events: We have to make a change, not only for ourselves, but for all our friends and family members who might still become infected.

Personally, I've written to the Hon. Deb Matthews, minister of Health, at least twice and never received a response or even acknowledgement that my letters were received.
Same with letters to our MPP, Linda Jeffrey, who is also sitting on the Health, Education and Social Policy Committee. No response to any of my letters, so I sent another one off this morning to ask for the support of Elizabeth May's bill.

Private Member's Bill to ask for a National Strategy regarding Lyme disease: Listen to Elizabeth May's presentation on this link: May Tables Private Member's Bill on Lyme Disease
Video is there as well. Click on the link above, not on the still picture to the left.


Ontario Lymies: The list of people living with Lyme disease in Ontario keeps growing every day. The count is around 60 by now, collected in two weeks.If you know of people with Lyme in Ontario, please send them to this blog to see why I'm collecting a tally:

Lyme disease support group in Brampton: If you are interested, please let me know and we can go from there. We could plan the first meeting for the evening of June 28. If you are interested, please contact me at Support group Brampton

Lyme Disease on CTV National News, June 20: 

Lyme Disease on the increase   or the video without Elizabeth May, and with write-up underneath.

 Let's go from strength to strength! Together we CAN make a difference.

Things change ...

The space of hours changed everything!
~~Update: The news video clip on CTV news can be seen HERE ~~

If you had a look at yesterday's post (here in new window), the updates in quick format are below. Our Ottawa trip is off, so I have an unexpected day to relax and pick up on chores or such. What a gift! The CTV interview didn't air last night, as far as I know. Still talking about creating a Lyme support group in Brampton. Watch out for the extreme heat! And on July 1st, we'll have a Lyme awareness table at a local Strawberry Festival. Join us!

1. Our Ottawa trip for this week is off. Seems too many changes are happening and we might get there, not be able to be part of the press conference, maybe not get into the gallery for the tabling of the Bill, and perhaps there would be a vote to end early, which means everything will have to wait until the Fall. Some others are still planning to be there, of course, but for us to drive up for 5 hours in the heat, just to turn around again, is really not worth our while.

2. So far the Press Conference about the private member's bill calling for a National Lyme Disease strategy is still being planned for tomorrow at 11:30 am, at Parliament Hill in Ottawa. The Lyme Mobile is to be there at this point. I've asked for cell phone pictures to be sent to me if possible, and will post to this blog as they come in.

3. CTV Health news about Lyme --- the TV was on last night but I wasn't really watching and didn't think the segment showed. My apologies if anyone stayed up to watch the 11 o' clock news! That was the info I had. However, whenever (or if) it airs, it would probably online the next day, at CTV National News, then choosing the relevant date in the list below the video screen.

ADDED after the newscast: 

Lyme Disease on the increase   or the text from the video write-up underneath.

4. Lyme disease support group in Brampton: Some emails received, but I know everyone is wilting in the heat and probably watching the events in Ottawa, so didn't expect anything concrete to happen until maybe the weekend or next week. If you are interested, please let me know and we can go from there. We could plan the first meeting for the evening of June 28. If you are interested, please contact me at Support group Brampton

5. Extreme heat alert for much of Southern Ontario: Stay cool and hydrated, please! The heat and especially humidity make Lymies feel very bad, usually. Even late afternoon yesterday it was still feeling like 41 C / 106 F with the humidity. Toronto warning  

6. Lyme disease awareness at the Downey's Strawberry Festival!  Fun for the whole family, free parking and admission. Come for breakfast starting at 9:00 am, served with fresh strawberries. There will be entertainment, pony rides for kids, and all sorts of fun.

7. LYMIES OF ONTARIO: Emails are still coming in, asking to be added to the count. Please see the blog entry if you are interested to know why.

~~~~ Message just in: ~~~

From CNN: Ticks causing rare meat allergy
 ...

What causes the allergy may be surprising.

All known patients who have alpha-gal have had at least one tick bite. Platts-Mills, who also suffers from alpha-gal, made the connection after receiving countless bites while hiking in the woods one August. As a result, his level of IgE, which measures the alpha-gal allergy in one's blood, went up several-hundred points. That is when Platts-Mills concluded there is some relation to the number of tick bites one receives and how allergic one may become to alpha-gal.  .... "Presumably something happened with the ticks," said Platts-Mills. "It could possibly be a new tick spreading."

The above sentences are just some from the whole article. Please read from the beginning to get the context. READ MORE

Of Support, CTV News, Press Conference and Lymies

1. Elizabeth May's Private Member's Bill

On Wednesday, June 20, 2012 in Ottawa, Elizabeth May is planning to introduce a private member’s bill relating to Lyme disease, to be read to our federally elected MPs later the same day. Canlyme has been consulted at length to make sure patients’ interests will be heard. To make sure this Bill can be passed: Find out who your MP (Member of Parliament) is. Make sure your MP knows this is not just a Green Party bill; it is a bill that could affect every single Canadian. See the post by Chris Powell for more.

2. Press conference on Parliament Hill

A Press conference was being planned for around 11:00 am on June 20, to talk about the Bill mentioned above. That was now moved to Thursday, June 21, around 11:30 am. Many Lymies, their caregivers, families or friends are planning to be in Ottawa to lend weight and support to the issue. Take a look at the webcam facing Parliament Hill - hopefully you should be able to see some gathering there! Unfortunately, the camera cannot be controlled, zoomed or panned by viewers and is a bit fuzzy. 

3. Lyme on CTV National News tonight

A few days ago, I was interviewed by phone for CTV National News about Lyme Disease. A cameraman came by later, while I was vacuuming, sweaty and surprised! Told him I needed only 7 minutes to shower, wash hair and get dressed. He said he needed 20 minutes to set up anyway, so we went about our business before the taping. (Janet called it "Wash and wear Meerkat ...") The segment will air tonight on National News at 11 pm, but I have no idea what might be shown, or even much about what I said. I know the mess of pills were positioned behind and have a quick cell phone pic of the basic setup.  CTV clip link: HERE or the text write-up of the same HERE.

4. Support group in Brampton

While collecting the information about Lymies of Ontario, a few people asked about a support group in Brampton. There is one in Richmond Hill, but it seems it is too difficult for some people to get to. I'm busy with talks about space and so far being successful. Would anyone be interested in meeting twice a month or so, in the north of Brampton? We could plan the first meeting for the evening of June 28. If you are interested, please contact me at Support group Brampton

5. Some fun in the sun!

We used to love going to Wonderland before I got sick. Yes, we did the SkyFlyer and all the roller coasters! We didn't realize how long it has been, but Sunday went together as a family. The boys wanted to treat their dad for Father's Day. I couldn't stay the whole day, but we had oodles of fun! Blurred out the other people, and here are the five of us on the Behemoth. We did the new ride, Leviathan, three times and thoroughly enjoyed each one. A smooth ride, and wonderful views from the top, especially just before the 309 ft drop.

6. Lymies of Ontario

Emails from people with Lyme disease in Ontario are still coming in, either just initials, or first names, or full information. Please see why we need these on this blog post: Are you a Lymie?
There is a national registry being compiled as well, if you are interested.

Links mentioned in this post:

Elizabeth May about the National Strategy for Lyme Disease 
Lyme disease in Private Member's Bill (Chris Powell)
Webcam facing Parliament Hill, Ottawa
CTV National website CTV News
Canada's Wonderland
Lymies of Ontario
Canadian Lyme Disease registry

Caledon Day Lyme booth

A very successful day at Caledon East, to share information, flyers and facts about Lyme disease! It was amazing that almost everybody who stopped to pick up flyers or ask questions, knew someone with Lyme disease. Only a few were not aware. All were willing to listen. All thanked us for our time, and for making them take note of the disease and how to protect themselves.

Our booth at Caledon Day

 The stories that emerged, were interesting, funny, scary, and sad. One woman talked about someone who has been sick for 5 years, with the usual - no diagnosis for years, now treatment in the States. This woman dearly wants a baby, but doesn't dare fall pregnant. This disease is stealing so much from so many people, and it doesn't have to be that way!

Joe was great - every time someone walked by and looked over but walking by, he would ask, "Do you know about Lyme disease?" They would wander over, and start listening, asking questions, and pretty soon clutching flyers and asking for contact information.

But we also had time to eat, share a few stories, and talk about our next event to share information.

Thanks again, to the Caledon Town Council for giving us this opportunity to share awareness about Lyme Disease!

Please watch this blog about updates this week, and things that will be happening this summer. Lots of interesting things to share!

• Do you live in Ontario with Lyme disease? Join the list and see why we need you

About found ticks, Lyme Crusaders and Lymie tallies

 Some people might know that I was infected near Picton and Bloomfield in the Bay of Quinte in 2007. I reckon it might have been while taking pictures of dragon boat races.

My friends, Sue and Dave, were our hosts during that visit. She is now very active about getting Lyme Disease awareness in that area. On April 21 their Women's Institute had a well-attended seminar about the disease. Christine Heffer attended, as you will see in the article which is linked below.

Here is Sue's email from that evening --- and then the wonderful follow-up which happened this week! I never did get around to posting Sue's report on this blog after the successful seminar, but maybe it is just as well to have waited!

Sue writes on April 21:
"Tonight went really well and every chair in the hall was taken with people standing.
As I walked in tonight Sandy L., our Women's Institute Advocacy person, said: 'Your Lyme Program is tonight!' I didn't realize that it was my suggestion that got the ball rolling but the institute can't ignore the results tonight. The press was also there.

"The health department presentation was good but soon it was obvious that their hands were tied as far as treatment.
"A lady from the audience asked if we could hear from the two women who had identified themselves as Lyme positive. As the program was ahead of schedule the floor was given to them for almost 20 minutes. Everyone became frustrated and Dave spoke to the need for change in educating doctors and having the whole system more proactive. This received applause.

"Then the Vet spoke and it was a total flip side for dogs. There are good tests that can be done in the office and results in 15 minutes.
A good vaccine, and why not give antibiotics if there is a reasonable suspicion. Also a follow up, more accurate test is available on an ongoing basis in case the Lyme doesn't present itself for months.
Advantix works to repel before a bite occurs.
He was very careful to present all this for animals only and is trying to get the board of health and the medical board all talking together but for now it sounds like we should put on a fur coat and go see our Vet."

That was not the end of the story, though! The next part shows how very important education and awareness is. Last night I received the following email from Sue, as part of a conversation with Sandy:

 Conversation dated June 13:

Picture from the Internet

"Just to let you know that I think that our presentation may have been helpful in getting the local doctors to pay attention.
After the presentation, my brother,  who drives charter buses, was on a one week tour of the North Carolina area. He found a tick on his stomach, he saved the tick and took it to  the doctor here when he returned. The doctor immediately put him on  antibiotics and sent the tick away for testing. The results came back in just a few days. It was negative but he stayed on the medication  anyway.
At least some of the doctors are on the ball."

What a great follow-up story! It clearly shows how important for doctors as well as the public to be aware and alert, and how to avoid a possible epidemic.

Lyme Crusaders deserve Praise! 

Read about the Richmond Hill group, and the support they give to Lymies. The article was in the Markham Economist & Sun's Editorial section (link below). It starts off as follows:
"The courage and outspokenness of a small group of Richmond Hill activists deserve commendation this spring, especially as their issue is poised to be raised on Parliament Hill next week. ...."

Are you a Lymie?

 Do you live in Ontario with Lyme?  Tally for Ontario's Lyme registry: 50 on June 14.

Tally for national Lyme registry: 80 on June 14. Read more

Links mentioned - and remember the festivals:

Quinte West

• Picture of Lyme speakers in the SnapQuinte paper (April 2012)
• Report in the Quinte West EMC for April 24, or see a screen grab in jpg format  (click for bigger view) 
• Lyme Crusaders deserve praise - online
• Picture of the Lyme Crusaders editorial 
•  
• Bass Pro Shop about Lyme Disease
• Caledon Day with Lyme booth, June 16, from 2:00 to 10:00 pm Website and map
• Markham Music Festival with Lyme booth, June 15 and 16: Website, pictures, schedule and video clips 

SUCCESS AND SUPPORT!

Yesterday's presentation to the Town Council of Caledon went really well! They listened attentively, asked many really good questions, and asked several times what they can do to help. Then the Mayor and Councillors sprang into action!

Time allocated for the delegation was 15 minutes and I think I only spoke for 5 or 6 minutes. Lots of questions followed, high interest and excellent suggestions made it 25 minutes.
Mayor Marolyn Morrison writes a column every week and is planning to write about the presentation regarding Lyme disease.
Councillor Allan Thompson will present to his ROMA Caucus this week (Rural Ontario Municipal Association)
Mayor Morrison will present to the influential Regional and Single Tier Caucus.
The issue will then be brought to the Association of Municipalities of Ontario.

The Council will support us when we make a presentation to the Council of the Region of Peel at a later date. 

They asked if we have flyers or information and would be able to attend the Caledon Day this Saturday. The Council will cover the liability for our booth  in Caledon East, which will be from 2:00 pm to 10:00 pm.

There were two reporters from Caledon papers who were jotting down notes and will be writing something. 

We had a delegation of 6 supporters at the meeting. 

 And I was told that my green toenails had to make an appearance on the blog as well!

More info -- the Bass Pro Shop in Vaughan has a page on their website, warning about Lyme Disease and how to protect and take care. Excellent that they are doing that!

Messages keep coming in from people in Ontario who have Lyme Disease. Please take a look at the link below if you know someone with Lyme, and the reason why the list is being compiled. 

List tally from Friday to Tuesday: 36 reported in. More emails arrived today, to be added. This is breaking my heart, reading all the stories.

LINKS MENTIONED IN THIS POST

• Bass Pro Shop about Lyme Disease
• Caledon Day, June 16, from 2:00 to 10:00 pm Website and map
• Do you live in Ontario with Lyme disease? Join the list