A petition, a new Lyme book and a Community event

How did it become November already, and almost halfway through it, at that? I'm sorry for the lack of updates. Things have been really busy, and I've had a few setbacks, health wise, which didn't help. Short-term antibiotics for a raging infection which had me writhing and rocking in pain. BUT --- it is the first one in months, so no complaints! When I told the doctor-on-call that it felt as if I was "sitting on a baby's head" his eyes hopped up on stalks. Poor man. My regular doctor is used to the weird descriptions and just take them in his stride. I'm so grateful to him! And dr. M, if you are reading here, you know how I appreciate your care and concern.

Back to the post. Because of the lack of updates, this post will contain three really important separate issues. I'll try to keep my part short, but please click on the links in the highlighted lines if you want to read more about any of them. Or if you want to drop by on Saturday for a visit, fresh, warm crepes, and more! Each of the links will open in a new page or window so that the blog will remain for you to return to.

1. Petition
2. New book on Lyme disease
3. EXPO with Lyme table

PETITION: Randy Hillier, MPP, Lanark, Frontenac, Lennox-Addington, is putting forward two motions on Lyme disease in the Ontario Legislature this coming Friday, November 15th, 2013. He would like to have 2500 signatures by Friday, and at this point there are about 200 still needed.

SIGN THE PETITION: Link 

2. Book: Why Can't I Get Better? - by Dr. Richard Horowitz

From the Marketing Manager: "In his new book, Dr. Horowitz, a board-certified MD specializing in Internal Medicine, has mapped out a 16-point Differential Diagnostic Map to treat patients with Lyme disease, and those suffering from overall chronic illnesses.  He introduces MSIDS, or Multi-Systemic Infectious Disease Syndrome, which provides a new lens on chronic illnesses that may prove to be the missing link in an effort to decrease the number of Lyme cases, and chronic illness sufferers, in the US.  And, he covers in detail Lyme’s leading symptoms and co-infections, including immune dysfunction, sleep disorders, chronic pain, and neurodegenerative disorders."
ISBN: 978-1-250-01940-0, $29.99 US.

My review on GoodReads will be updated and added to as I read: LINK 

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LYME info table at SouthFields Village EXPO on Saturday
I'll be greeting visitors at one end, with a table full of information about Lyme disease at the
SouthFields Village EXPO, at SouthFields Village Public School (110 Learmont Ave., Caledon, ON) on Saturday, November 16th from 10 am to 4 pm.
Come early, and come hungry!

Here's a short list of what you might see, experience or enjoy on Saturday:

• Fresh crepes will be available for sale
• Purchase door prize raffle tickets. 
• Glen Echo has generously donated a gift certificate for a live Fraser Fir Christmas Tree.  
• Help decide who wins the Chef Challenge.
• Yvonne Ibarra will be doing a live Zumba demo first thing in the morning 
• Birthday party on stage 
• A magician at noon and 
• Games and crafts all day long 
• There’s even a mini-arcade with cake and please do bring a present. We’ll gladly make sure that your new, unwrapped gift will make its way over to kids who would otherwise go without birthday or Christmas presents this year.
• Anybody can drop in and try their hands at the pottery wheel. After the show Wendy will take the pieces home to fire and glaze them for you so that you’ll finally have that special work of art on your mantelpiece.
• Farmers’ market and a local small business showcase. 
• A really cool speakers’ series with half a dozen speakers covering a wide range of subjects from how to take the perfect holiday photo, planning your next home reno project to hunting for the paranormal. That list is already available online at caledonspectrum.com.
• Mark Grice will start with a blank canvas and finish with a beautiful painting within 3 hours. You can watch him paint and even get to bid in the silent auction for the finished piece. 
• Several established, professional artists will be joining us in a gallery space and lounge area where you will be able to explore the art and relax with a cup of hot apple cider, care of Spirit Tree Estate Cidery. Light refreshments will be available or you can bring in something from the food vendors in the main hall. Meet and chat with the likes of Merle Harstone, Cory Trepanier and more as they exhibit their work.
• Both Sparky the Firedog and Caledon Community Designated Driver Association’s Home James will be on hand. 
• Live mannequins will be modeling one-of-a-kind Hattitude Jewellery and other pieces from Chic a BOOM.
• Dignitaries have been invited to partake as judges in the chef challenge (to take place around 11am) but the general public is also going to have a chance to pick their favourites throughout the day.
• Show proceeds will go toward supporting music and arts programmes at SouthFields Village Public School & Mayfield Secondary. Other proceed recipients will include Family Transition Place, Caledon Meals On Wheels, CCS, Cystic Fibrosis and more, as there will be a number of non-profits represented at the show and various elements to support them. But don’t think we’ll be there just to get your money. 

Admission is free, parking is free, the speakers’ series is free (but seating is limited and will be on a first come first serve basis), and so are the crafts and games at the blazin’ birthday party.

SouthFields Village EXPO: Nov 16 - 10 am to 4 pm: LINK 

News, Newsletter and Newspaper

May is Lyme Disease Awareness month. 

If you can wear a green ribbon, sport green shoe laces, tie a green ribbon around your tree - anything at all to raise awareness for this disease, you are helping someone else.

Ticked off resident story will be in print tomorrow. The tag line is that "dogs can get treatment for Lyme disease, but humans can't" - which is my current reality and that of many others in Ontario and elsewhere.

Member of Parliament, Parm Gill: If you follow me on Twitter (link to the right of this post), you will know I've been chasing a local MP to find out if there is any support for us with Lyme disease. Specifically to find out if our MP supports the Private Member's Bill C-442, for The National Lyme Strategy Act, as brought by Elizabeth May (Canadians: download petition). After months I caught up with him briefly in Brampton on Saturday, and a picture was taken with the Lyme Mobile.

On the right is a graphic I made from his newsletter which was sent out today. This is only a modified graphic; the full newsletter is available from his website: Newsletter online. He also said something about adding the Brampton Lyme Disease Awareness Day on May 18 to their calendar. I do hope there will be representation! It will mean the world to local Lymies if there is more support.

Download registration form for the Walk from HERE. Complete and send email to request pledge sheets.

HOW GOES THE BATTLE?

Someone asked me this morning, knowing I've been off antibiotics since February 8. So far, so good! Just one more week to go until I'm officially in Remission. Lymies - please know that it IS possible! Last April when I had to leave a job because of the damage done by Lyme Disease, I did not believe this day would ever come. This is not my journey; it is also the journey of my husband, family, friends, and people near and far, of prayer vigils and unwavering support. 

Thank you. That's all I can say. Together, we DO make a difference. 

Post from April 2012

The Farmers and the Guides

This has been a very busy week! In the first place, there were several days of Lyme disease awareness events, and in the second place, I'm working on a project with my daughter-in-law. We're both very excited about it, but won't talk until it is done!

 OFA CONVENTION

The biggest event was as mentioned in a previous blog post, that Joe managed to get us a table to share information about Lyme Disease at the OFA convention [Ontario Federation of Agriculture], which was held from Sunday to Tuesday near the Toronto airport. We went down on Sunday afternoon to set up our display. We had a great position where people could see us.

There was nowhere to hang our banners, so we 'borrowed' a luggage trolley and tied the vertical banner. It worked, and after the convention, the cleanup guys were happy that there was a trolley ready for use! 

That afternoon kept us hopping as farmers came by to pick up brochures, ask questions, share tales and stories of ticks found and bites happening. Most mentioned that the ticks have been out since February this year, which confirmed what we have found out during the summer events we had.

Many signed the petition (see link at the top of this blog page) to ask for a national Lyme disease strategy. We need to get more of the MPs [Members of Parliament] on board! People took note of the blog address and several promised to get on board for the Awareness events in May.

All things considered, it was an extremely successful event. The OFA will also publish links to their site. We owe them a great thank you, but also needed to get the word out to farmers so that they can protect themselves in order to feed the rest of us!

TREFOIL GUILD

 A friend asked if I would speak to the Trefoil Guild. Of course I said yes - no passing up on an opportunity to share information, answer questions and hand out brochures! But what is the Trefoil Guild, you ask? I had to go look too!

From Wikipedia: "Adult members over the age of 30 have the option of becoming Trefoil Guild members. A woman can opt to be a member of the Trefoil Guild and participate in other roles within the organization. Trefoil Guild groups usually meet once or twice a month, and often participate in various Guiding events. Many Trefoil Guild members are senior citizens, some of whom have decades of Guiding experience."

Happy birthday!

There were about twenty ladies on Tuesday evening, from different guilds. They were wonderfully warm, accepting and interested. They were also suitably horrified about the lack of treatment. Many super connections were made and promises to be there to help if we should need them. I'm so grateful for the opportunities!

Friend Jean and her friend Rita had a birthday earlier in the month, so candle-lit cupcakes and a bunch of flowers were delivered! I didn't have my big camera there (shock! gasp!) but grabbed a cell picture.

 MEDS REPORT
Still feeling a little queasy every day, but hopefully things are settling. I'm only taking the Tinidazole three days on and three days off instead of two weeks on and two weeks off. The Bab-2 is twice a day, along with all the other meds plus several supplements.

Wednesday I had to work to make up for Monday when we were at the OFA. That evening I had another volunteer group meeting in a nearby village, but kept yawning through it! Good thing I'm the recording member and had to keep notes, or else I might have fallen off my chair. Fell into bed and spent Thursday mostly in a daze, trying to recover before meeting another volunteer group to discuss the 2013 Fall Fair, and then taking out our married children for sushi.

 WORLDWIDE LYME AWARENESS 2013
Please take a look at the buttons above on this blog, to view other pages - the Petition, and especially the Worldwide Protest pages. We now have 18 countries joining in and more to follow!

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!

Scandinavian Lymies have the same battle!

Why on earth can developed countries not treat and care for their own Lyme Disease Patients until they are well and functioning again? Nobody can understand that.

Friend Nyree from Sweden sent a message this morning, about Scandinavian patients having to go to Norway for treatment, with support from Germany! I'm posting her message with her permission here below:

Nyree wrote: Yesterday I was listening to the radio, and an “investigating” radio show, broadcasting on national level had a program labeled Pioneers abroad save Borrelia patients.

http://sverigesradio.se/sida/default.aspx?programid=3375

Needless to say I began listening more thoroughly & also downloaded the show to listen from the start today.

The program spoke about how difficult it is for Lyme patients to be believed, and to receive the proper treatment since antib’s are only distributed during 30 days here in Sweden, and many are mistakenly diagnosed with MS while they truly suffer from Neurological Borreliosis…They mentioned both ILADS & IDSA in the program.

A Norwegian clinic, Arena Kliniken, http://arenaklinikken.no/ are treating lyme patients based on American findings via a clinic in Augsburg, Germany, and they receive many patients from Scandinavia…

(Translation of the article can be read here on this blog.)

The German Lyme Fighter, Armin Schwarzbach

  Thanks for sharing, Nyree! And I'm pretty sure the Augsburg clinic might be by one of the doctors I met and chatted with in October at the ILADS Conference in Toronto - see his picture on the right.

A petition is online to lobby for removal of the outdated IDSA guidelines. The site explains the reasons. Please read for yourself, and sign, then share the link with others. Countries outside of the USA, skip the box for "State" and just choose your country. It will work that way.

* On another level, the website for the Lyme Walk in Brampton has been registered on the weekend and is being developed. For some reason the site is not live (yet) while I'm writing, so a mirror site is there. The petition is linked on the right side of that site. Please share! We hope to have a sea of green T-shirts there that day! Wear green if you have it, but we are designing and ordering shirts as well.

LymeWalkBrampton website or if that's offline, the mirror site LymeWalkBrampton

 Jenni is working on a better graphic of the jailed tick and more pages, info and links will be added as the weeks go by.