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

Pushing for more awareness

This post will be about several different items, since a lot happened during the last few days, regarding the Lyme Front!

1. Today a group of us will delegate to the Town of Caledon Council meeting, to ask for support and help in moving forward for Canadians with Lyme disease to get the health care they need. This is the request I've sent through to present: "Lyme Disease patients are being denied access to health care in Canada. Too many Canadians are now disabled, deprived of the joy of family and friends, of school or work, due to Lyme disease. The public and the medical community need to be educated as to the increasing incidence and range of this disease. Lyme Disease is currently spreading faster than AIDS, West Nile and Avian Flu combined. Lyme Disease can be devastating and affects every organ and part of the body, including the brain, if not treated in a timely manner. The cost to health care and welfare as well as social and economic structures could be astronomical. We need development of a national strategy to address the challenges of timely recognition, diagnosis and treatment of Lyme Disease." Supporting documents are my own letters and story, Jim Wilson's article in the Health Magazine and the Press Release regarding the Government Report about Lyme Disease in BC which was published last March (links below)
2. Some of the statement above was taken from the website of Elizabeth May, Member of Parliament, who will introduce a Private Member's bill on June 20. This will be a "National Lyme Strategy Bill" and is not linked to any one party. This bill is aimed at supporting all Canadians with a much-needed, coordinated national strategy to get rid of the blocks currently preventing quick diagnosis, timely and accurate testing, full treatment and longer term support and care.
3. Tomorrow we'll find out if we can have a Lyme Booth to hand out flyers at the Caledon Day being planned for June 16. It is free!
4. This weekend is also the Markham Music festival. The Lyme Mobile will be there, and so will a booth with flyers and information. If you have a love for music, if you have a dog, if you want to get out and enjoy some fun, join in and come say hi, please!
5. Since starting to collect a list of Lymies in Ontario on Friday, after a successful meeting with a City Councillor and LHIN Board chair, there are more than 2 dozen people who emailed their names or initials to be added. Heartbreaking stories emerge. Tales of neglect by the medical profession, stress and concern about children and parents, loss of jobs, activities, mental capacities, family budgets and more. THIS HAS TO STOP! Under the Declaration of Human Rights we have "- rights to health care and to the benefits of scientific progress".
6. The prediction is that by 2020, some 80% of Ontarians will live in a Lyme endemic area. We all need to know how to do tick checks and early symptom control.  Dr. Ernie Murakami, who was forced out of his practice in BC where he was successfully treating Lyme Disease patients, is very active in helping, supporting and sharing his knowledge. More than a decade ago, he developed a simple, fail-proof method to remove an embedded tick without leaving any mouthpiece or part of the tick behind, and without injecting the stomach contents into the host where it might be attached. The video link is on YouTube, as given below. Please educate yourself, and maybe put the video clip on a CD to take to your doctor and health care workers.

 Links mentioned above: 

• Lyme Disease in Canada: A Tragedy Unfolding? by Jim Wilson in HealthyLiving 
• Press Release in PDF format on 4Shared or directly from this blog
• Elizabeth May, MP, about Lyme Disease
• Do you live in Ontario with Lyme disease? Join the list
• Dr. Murakami's "blister method", using adrenalin to make an attached tick back out YouTube
• Caledon Day, June 16, from 2:00 to 10:00 pm Website and map
• Markham Music Festival, June 15 and 16: Website, pictures, schedule and video clips

Are you a Lymie?

If you have looked at this blog before, you would know about the excitement regarding the first Lyme Awareness Day in Brampton. The team who helped me make this idea real, is a wonderful group and it was an immense success. We are still on a high! We met many people, and many found support and outreach in the process. Pictures and info on this blog.

In preparation for the event, I've asked the city of Brampton to proclaim May as Lyme Disease awareness month. Upon receiving that proclamation, I did not have a presentation prepared, but offered to answer questions. I'd bullied Kim to go down with me for moral support. You can read the description of that day here on this blog. Proclamation from Brampton City Council

As a result of that day, Councillor John Sanderson asked us to set up a meeting with him, to take our request for more support to the Regional Council. As it turns out, Kim's father knows Councillor Sanderson. The meeting was set for Friday, June 8. The week before, my buddy, birthday partner and longtime friend, Joe Gray, happened to run into the Board chair of our local LHIN (Local Health Integration Network**). As usual, he started talking about the plight of Lymies in Canada and Maria Britto was very interested.  She joined in at our meeting on Friday.

THE REQUEST

We were asked to get together a list of names of Lymies in Ontario - if possible, pictures if they would allow it, otherwise just initials or first names, ages, how long infected and area - or a combination of those to show how many Lymies are in the same boat. That will strengthen our case. We are adamant to keep fighting for the right of Lymies and their caregivers. This is no longer a rare disease and it is only getting worse.

If you are willing to be included in such a list, please let me know as much information as you are willing to share, with or without a picture. I promise not to hang you out to dry! I know some Lymies are not public, for various reasons, and I respect that.  Please contact me at Lymies of Ontario  THANK YOU in advance!

After that  meeting, I met up with Jim Wilson, president of CanLyme, and we had an excellent discussion. We feel that this year things are happening! We talked about the successful Lyme Walk and the same event for next year, as well as compared symptoms and situations of Lymies. I so wish to be able to help more, but realise that the fact that I'm just over 5 ft tall and not very loud spoken, people often ignore me as part of the background. So --- I'll collect the info in the background and strengthen the arms of those who are bigger than I am!

I firmly believe that the path is being paved for us and that it will go forward, from strength to strength!

**If you haven't heard about LHIN before, here is a short summary: "LHINs are an important part of the evolution of health care in Ontario, moving from a collection of services that were often uncoordinated to a true health care system." Website

My name is Marlene and I'm a Lymie, infected in Ontario in 2007, had a positive Canadian Lyme test in 2010. Now going to the USA for treatment.

Successful Lyme Day!

Saturday, May 19th, was the Lyme Disease Awareness day which was held in Chinguacousy Park, Brampton. It was wonderful! You can see pictures by going to the link on the LymeWalk website,  http://LymeWalkBrampton.ca

Thank you for any support, thoughts, prayers, volunteers, people attending, donations --- a hundred different ways in which you played a role.

It was by all accounts a success with at least 400 people coming out, taking part, being seen, sharing stories and support. We estimate at least 50 people there had Lyme Disease.

This is no longer a rare disease. 

So many people gave so much of their time to make this dream of mine come true. Without them, it would have remained a dream, or a small event. We have raised at least $12,000 so far and more donations are coming in almost daily. The money is being donated to the Canadian Lyme Disease Foundation and will be put towards more awareness as well as one day creating a testing facility for Lyme Disease in Canada. At the moment, tests in Canada are woefully inadequate and people end up sending their blood to laboratories in the USA. This further skews the number of cases in Canada.


I've contacted newspapers, radio and television before our Walk to ask for reporters to cover the event when it became clear that it would be bigger than I originally thought it might be. There was one photographer from our local paper who took lots of pictures of the sea of green T-shirts streaming by, walking for awareness. Yet, no pictures, no mention, no article appeared and no other media even responded to my messages, calls and voice mails. Today on Breakfast television there was a report about Bicycle month with 200 people coming out - we had double that number out. My friends who have gone with me through this disease for the last several years said it was an eye-opener for them to see so many people with the same story. Surely it should be important enough to pick up by reporters?

I've been writing lots of letters and emails and hope something will get through!

We Lymies feel that this disease is being ignored, not only by the medical profession, but also by the media. There are very few warnings while West Nile gets regular attention. We need the same level of reports and information about Lyme Disease. Transmitted through the bite of an infected tick, the number of Lyme disease cases in the United States has doubled since 1991. At least 27,000 new cases are reported each year. But because of inaccurate tests and under-reporting the actual numbers may be up to 12 times higher, according to the CDC, making Lyme disease an epidemic larger than AIDS, West Nile Virus and Avian Flu combined.

This is a serious condition, stealing people's lives and minds and destroying family relationships, savings and futures. It can become an epidemic, but can be prevented if the public is aware. We really need to show how "not rare" the disease is at this point. Not all Lyme patients are public with their condition, because of various reasons, ridicule and other issues. I am completely open and nothing about my disease is a secret. If it helps someone else, I'm happy to talk.

Thank you cannot cover the grateful feeling in my heart, for everyone who did something to make this Awareness Day the success it was.
We CAN make a difference.

Calls for Deb Matthews' Resignation

What they said!!! Personally, I've written to Deb Matthews, Minister of Health and Long-term care, at least twice. Never once did I even receive a form letter to acknowledge receipt of my letters. Please read the letter below, submitted by the York Regional Lyme Alliance and published in "The Daily Observer" (original link below the letter.)

Hon Deborah Matthews, MPP

Dear Editor:

The growing Lyme disease epidemic in Ontario has been repeatedly ignored and dismissed by the Ministry of Health leaving millions of Ontarians in danger of contracting a debilitating and deadly illness without the institutions in place to provide them with proper treatment. We therefore demand that Health Minister Deb Matthews resign due to her negligence and her failure to provide Ontarians with the "finest healthcare" that Premier McGuinty has promised us.

On Nov. 30th, 2011 MPP Bob Bailey (Sarnia-Lambton) tabled a petition endorsed by over 100 Ontario Municipalities representing more than 3 million Ontarians (2006 statistics) calling on the Minister to enact immediate changes to the way Lyme disease is tested and treated:

1) Include all currently available and scientifically verified tests for Acute and Chronic Lyme Disease diagnosis;

2) To do everything necessary to create public awareness of the disease;

3) To have internationally developed diagnostic and successful treatment protocols made available to patients and physicians

The Minister responded to the petition on March 19th, 2012 by stating that the government is “committed to protecting the safety of all Ontarians and their families from preventable vector-borne diseases.” However, her response failed to address the major issues outlined in the petition and ignored Ontario’s Chief Medical Officer’s warning that “If left untreated, Lyme disease can progress to an early-disseminated disease with migraines, weakness, multiple skin rashes, painful or stiff joints, cardiac abnormalities and extreme fatigue. If the disease continues, arthritis, along with neurological symptoms such as headaches, dizziness, numbness and paralysis can occur.” Given the magnitude of Ontarians asking for change, it is beyond belief that such a simplistic response could be given.

It also was both shocking and discouraging to see that there was no commentary regarding the present testing regime which has failed so many Ontarians. Rather the status quo would be maintained without any change, expansion or even review. Nor was there any suggestion of inclusion of access to testing which many Ontarians have sought from international labs.

Ontario doctors follow a two-tiered testing system for Lyme disease. The first screening test is called an ELISA test. When ELISA test results for Lyme disease are positive, doctors prescribe appropriate antibiotics. In 2006, The International Lyme and Associated Diseases Society, a world-renowned body, said that “The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme (only 65% sensitivity) and is unacceptable as the first step of a two-tier screening protocol.”

When ELISA test results are negative, doctors can not prescribe antibiotics and in Ontario doctors rarely order the second, more reliable, Western Blot test.

The longer it takes for a patient to be diagnosed, the worse their condition becomes, and the greater the financial and emotional toll on the patient and their family.

Many doctors including infectious disease specialists know very little about the growing threat of Lyme disease (and the scandalous lack of treatment for those affected) in Canada today.

Ontario’s health system is rapidly deteriorating, i.e., the recent ORNGE fiasco, the issues with eHealth, the insufficient number of family physicians in the province, etc. If indeed a cabinet minister is responsible for the inaction of their ministry, then Deb Matthews has crossed the line one too many times. She has demonstrated astounding negligence in the case of the growing public health threat of Lyme disease.

The members of The York Region Lyme Alliance demand the Minister’s immediate resignation and plead with the Premier to replace her with someone who is committed to providing Ontarians with the finest health care.


The York Region Lyme Alliance
Lyme Alliance calls for Deb Matthews' Resignation - The Daily Observer - Ontario, CA

Lyme Day, Brampton - a huge success!

Today, as you know if you have been reading this blog, was the date for our Lyme Disease Awareness day. So many people gave so much of their time to make this dream of mine come true. Without them, it would have remained a dream, or a small event.

But look! I have no idea how many people turned up, but there was a sea of green! Roberta, bless her, had my camera and went nuts. I'm so grateful to her, because without that, we wouldn't have these pictures capturing the moments!

Ready to start the walk!

I'm busy uploading and captioning pictures. If you have a Gmail account, you can log in and post comments or names on the pictures if you like. The link to the online album is  HERE  - please enjoy them!

Thank you can not cover the grateful feeling in my heart, for everyone who did anything to make this day the success it seems to be. I'll send emails as well, but please know that everyone, near and far, created the day. To everyone who made the effort to come, to join in, to tell others, or in any way did something - my apologies if I didn't get to talk to you in person today.

Let's get the word out about Lyme Disease, every day, in every way we can!
We CAN make a difference.

** See the front page of the LymeWalkBrampton.ca site for a plan and request for your Walk pictures!

Lyme Walk T-shirts just arrived!

I'm so excited -- the T-shirts look great! Sorry that I had to model it myself, but there's nobody else --- and just a cell phone pic.

The link is on the LymeWalk website, under the Sponsors tab - please visit a few of them and tell them where you found them! For instance, our tick was designed by Jenni, who has her own unique style and is accepting commissions! Her business card is on the Sponsors page, with link. Check out the sponsor logos, please. It would be great if you could visit their sites. We also had a bunch of supporters who helped in some or other way to make this Lyme Awareness Day come together.

Sample of the Lyme Walk shirts

Did you see the Maple Leafs collectors items we have for the Silent Auction? Read the post below this one and please tell any hockey fans you might know. NOTE: Cash or credit card only, please.

We'll have a Petition ready for people to sign, to get awareness to the Government, adding our voices to those already trying to get action.

Please bring water, sunscreen, snacks or a picnic if you plan to spend the day in the park (there's a Midway in the afternoon), a folding chair or picnic blanket, and anything else you might need for a day out. On the Walk FAQ page you will find a MAP of the park, showing where is what, parking, activities, and more.

Weather promises to be gorgeous on Saturday. We hope to raise awareness about Lyme Disease, to share stories with each other, and to have fun out.

Autographed hockey items for our auction

Now, don't shoot --- but we are not (ice) hockey fans. And no, not really rugby fans either! But we know how important hockey is to Canadians.

If you are in the market to collect some autographed Maple Leafs items, drop by on Saturday in Brampton, at the Lyme Disease Awareness Day! Two very special autographed pieces will be part of the auction.

(Link to bigger view is below)

There are many other items to bid on as well. You don't have to participate in the Lyme Walk to be able to bid; there are separate bid forms to register (cash or credit card only). The Walk participants will receive a bidder number when they register and hand in signed waivers as well as any pledges or donations they collected.

Some items for the auction:

• Remote controlled helium fish (you got to see it to believe it!) 
• Pinwheel wine decanter (priceless)
• Watches, radios and more
• Beauty products
• Family 4-day passes for the Brampton Fall Fair
• Household items
• Canvas lounger chair
• Maple Leafs autographed jersey
• Maple Leafs autographed stick
• and more!

JOIN IN ON MAY 19! 

Crazy prizes will be handed out during the day, but you have to be there to win. Hint: A crazy hairstyle might get you a prize ... Some little prizes, some fun toys, some big things -- and some very special items that were designed especially for our Walk event in England by a friend of mine. The files were sent electronically and the designs created in Alberta, then shipped off in a hurry to be in time for Saturday. These are special Lyme decals.

This is a truly international event! Thank you, Bendog and Sue, for your part in our day! 

 

BramptonGuardian Article: Lyme Mobile hits the streets

Feeling quite embarrassed  reading all that ... and a slight mistake as I never stopped working altogether, but just adjusted hours. The people where I worked, were and are immensely supportive. Work kept me sane. Just having to get up each day, get dressed, get out, instead of staying in bed (which was what the body wanted), made a difference, I'm sure.
BramptonGuardian Article: Lyme Mobile hits the streets

Another picture that was in the Guardian on May 4, is here below. That was the day when we talked to the City Council, as a previous entry on this blog explains. 

 Weather for our Lyme Awareness day on May 19th looks great!

If you're coming, please remember to bring sunscreen, water and a picnic blanket or chair to sit on. We have no idea how many people might be there, but it looks promising!

Silent Auction items are fabulous. There should be something for anyone. Even if you are not taking part in the walk, you can register to bid on items if you like. Registered participants get a bid number automatically to use if they like to bid on any items.

There are special Maple Leafs things ... signed ... check out Facebook or our LymeWalk website for pictures which should be taken today and uploaded as soon as possible.

We are so very grateful to our sponsors, to committee members and many, many other helpers who made this day possible. May it be that Lymies and their caregivers find support, networks, help and information to help the isolation so many feel by not being able to get treated in Canada.

Lots of prizes will be handed out, but you have to be there to receive them! Crazy things --- anyone can win.

Lyme Mobile brings something wonderful

This is meant to be, Kim and I are sure of it! This Lyme Mobile has already saved lives. Happened again this morning. But first to tell about last night!

We took the Lyme Mobile over to Vaughan for the Magnotta Underground Cellar event, to benefit CanLyme and awareness of Lyme Disease. Neither of us met Rosanna Magnotta before, although of course we know of her, and their winery is one of our (family) favourite spots in the Niagara Region.

Trying to change lanes to get to the winery last night was interesting! People kept reading the messages and signs on the car instead of letting us in! But we made it and Rosanna was waiting for us. The Lyme Mobile was parked so that arriving guests would see it and know they were at the right place.

Rosanna Magnotta, Kim and Marlene with the Lyme Mobile

(bigger picture)

Inside, we met with several interesting and interested people, struck up conversations, enjoyed the delicious snacks and of course Kim shopped a little! We were surrounded by barrels of aging wine, and people who actually asked the right questions about Lyme instead of looking surprised. Sharing stories, some of them horror tales of sadness and lives forever changed. There has to be accountability; this can not continue.

 

Picture above is a combination of one of the pretty decorated tables scattered around, and a view from a corner of the cellar where the function was held. (bigger picture)

A meeting meant to be

This morning, I took the Lyme Mobile to work since it has to be at the Brampton Community Expo tomorrow, with flyers, CanLyme brochures, and Pam and I in attendance to promote the Lyme Awareness walk on May 19. I took a different route than usual, stopped at several places where I don't usually go in the morning, and then decided to visit a business supporting our Lyme Walk. I didn't know where they were, so pulled into an office building's driveway to make a phone call. 

I wasn't there 10 seconds when a man came out of the building. He did a double take when he saw the Lyme Mobile, walked to the side and asked me to roll down the window. He said, "This is the Lyme Disease I know about, right? From a tick?" I said yes and he said, "I have a friend in the hospital in Downtown Toronto. She is dying from Lyme Disease. The doctors don't know what to do. I don't know what to do."

I grabbed flyers about the Brampton Walk and brochure of CanLyme, told him I have Lyme Disease myself and was dropped from treatment in Ontario. He got very upset, saying what are people supposed to do? I said that is exactly why we are driving the Lyme Mobile, arranging events like the Lyme Walk, handing out information and trying to bring awareness. Wrote down some info, told him to try and call my doctor, give my name and see if he can get help for his friend. He was so grateful, I was in chills and almost in tears .... 

The kind, kind man shook my hand, and said, "What are the chances of me meeting you here now, today, in this moment?"

This is planned, this is meant to be, we are being directed into a place and being exactly where we are to be. No other answer. For me, I believe that God is directing this. Other people can believe in another power. But this is not from one person or even a group of people.  There is a force at work, and this year will bring great things and great changes.

The Lyme Mobile and the Hydro worker

On Monday, when Kim had the Lyme Mobile, she stopped at a Tim Hortons. There was a group of Hydro workers and they asked about the disease. She started talking, one guy pulled up his shirt --- and he had a bull's eye rash. Kim immediately handed him brochures and told him to get himself to a doctor as soon as possible, to insist on at least 2 weeks of antibiotics and to find another doctor if that one wouldn't give it to him. Unfortunately only a very small percentage of infected people show a rash like that, but the specific rash is complete proof of Lyme Disease. Immediate treatment is needed. DO NOT wait for symptoms. 

That is what we're trying to accomplish: Information, education, knowledge, patients to be on the lookout without being paranoid, and doctors to treat immediately.

Proclamation from Brampton City Council

What a day! I thought it would be a formality, attending City Council, hearing the reading of the Proclamation, receive it, shake hands, smile, and leave. Was not expecting anything more.

Kim and I met Roberta at City Hall before the time and she took us upstairs to show where to sit. We got hold of the agenda, saw we were after the announcements and some other proclamations and I thought to just follow their procedure.

When called up, I bullied Kim to go with for moral support, took a bunch of the flyers and postcards about our Lyme Walk on May 19, meaning to leave them there for whoever might be interested.

The Proclamation was read by Regional Councillor Gael Miles (I've been in touch with her before about the Lyme Walk). The Mayor then asked if I wanted to say something, but I said I didn't prepare anything. Showed the postcards and invited them to our Awareness day, then said I'd answer questions if there were any.


My goodness! Lots of really good, in depth questions, one after the other, about figures of infections, early symptoms, where the ticks are, how they are spread and more. When I said that Kim and I both have to go to the USA for treatment, that I was set adrift after being treated here, the reactions even heated up more. Someone suggested a recommendation to take -- a quick point of order was called and continued.

We were there for a good half hour, I think, and the result is that a committee would be formed, action taken, and Kim and I to go to Regional Council to present the fact that Lymies have to struggle so to get diagnosed, then treated. There's lots more to say, but it was all positive!

Posed for pictures afterwards (Roberta had my camera). Thanks to Ashley at the Guardian, there was a photographer who wanted to take a picture of us, the Proclamation and the Lyme Mobile. So off we went in the bright sunshine to get it done!

Roberta said in the many years she's been involved in Council, she had never seen such positive reaction, high interaction, and quick decisions, so we have hope that we'll get the support we need!

The pictures with the Lyme Mobile were a lot of fun, and Roberta took several more. I'll upload one here and then add the link to see the others online if anyone is interested.

Here's the link to just a few more pictures, including one of the framed Proclamation.
City Council and Proclamation

When we went back for me to get my car and to debrief ourselves, we talked to lots of people at Colony Ford Lincoln Brampton. While waiting for Kim to go to Council, I sat in their waiting room for at least 45 minutes this morning, yes, wearing that green sweater! So when Kim and I went out to our cars, we got stopped by a man who went home for lunch, said he was flipping TV channels, recognized the sweater and then Kim, so watched the whole thing live on Rogers TV. Too funny!

Let's hope and pray that our part of being vocal, will help adding momentum to this effort that has been going on for years, and to finally be heard on the levels where it counts. We ask for awareness, information posted everywhere, education, doctors to be aware, and for early treatment without waiting for symptoms to appear.

Please join us on May 19! Download a registration form, or email us at LymeWalkBrampton with your name and info to say you want to take part in the walk, and we'll send you a form to start collecting pledges to hand in on the day of the walk. Thank you in advance, for helping to get the word out. Nobody has to be afraid of the disease, as long as we're informed and can get quick treatment. Not all ticks are infected, and not all bites will lead to Lyme Disease.

Lyme Mobile on Earth Day!

What a wonderful day we had! Busy, and I've used up all my spoons, especially with the busy week and yesterday's early morning women's breakfast as well, but worth it!

A production of "The Lorax" was shared by a group of people, with actors playing the parts.

More pictures are in the link below.

The most exciting event is the Lyme Mobile, made available to us thanks to our main sponsor for the Lyme Awareness Day, Colony Ford Lincoln Brampton. We managed to get four members of the committee together for a picture session. More pictures are HERE.

Pam, Marlene, Joe and Kim

The car won't be missed anywhere it goes! We hope people will download the registration forms and either register themselves to walk, or donate something, or sponsor us, or make others aware of the day we're planning. The ticks are already active and everyone needs to know about Lyme disease, the early symptoms and the effects of untreated bites. Not every tick is infected and not every bite will lead to Lyme disease.

Our Lyme walk website has the registration forms, and contains more links:
LymeWalkBrampton

Isn't it wild??

The car will be seen at the Brampton Home Show on May 5.

Lyme Walk times:
We hope most people will pre-register and sign their waivers before the time, so that they have time to gather sponsors or pledges to support their walk. Remember, there is a prize for the person collecting the most funds and handing it in on the day! Every dollar helps CanLyme. Registration forms explain the fees for individuals, families or younger people. T-shirts can be ordered if people want them. Pay by cheque or request an invoice via Paypal.

Registration and checking in will start from 9:30 am;
Silent Auction should be open for bidding from 10:00 am or earlier;
The walk will start around 11:00 (smooth, easy walk!);
Prize giving to be around noon.
Afterwards and in between there will be games for kids, face painting, bidding, time to talk to Lymies and their caregivers, answer questions, talk to the vet, and enjoy the picnic you bring along. We are not able to sell food.

HAVE FUN AND JOIN US!

The benefit of Auum oil

This is a testimonial I wrote about a year ago:

"I am convinced that Auum oil protected my brain and my body from becoming completely ravaged by undiagnosed Lyme Disease bacteria. Since August 2007, my health started spiraling down, with constant infections, severe headaches, chills, fevers, exhaustion unrelieved by rest, concentration problems, loss of feeling in fingers, dragging ankle, balance problems, vertigo and more. No doctor or specialist could diagnose the cause for sure and I had a list of different diagnoses, scores of tests and saw many different doctors.

Auum oil on the right

"In June 2009 I started taking Auum Omega 3 Sublingual oil, as a grasping-at-straws effort to try anything to improve my quality of life. Within days I noticed a change, especially in sleep patterns, and becoming more lucid when woken up. Energy levels improved. Although the infections still came, I felt more equipped to deal with them, as well as the myriad doctor's appointments to treat each individual occurrence.

"Finally, in February 2010, I could diagnose myself with Lyme Disease, with the help of a friend who has a daughter undiagnosed with Lyme disease for ten years. Antibiotic treatment started, which finally helped improve things. Since the disease went undetected for 3 years, the damage is extensive and it will take years to try and recoup the health I lost, and to try and restore damage done to all my organs. Auum is still an important part of my support system, and I wouldn't be without it. I firmly believe that without Auum oil, I would not have been able to continue working at the part-time job I had, while being undiagnosed.

"My goal now is to get more awareness about Lyme Disease, and to add my voice to ask for protection of the patients and the doctors who try to treat Lyme, as well as to ask for better tests in Canada."

Rose, who introduced me to the oil, is planning to be at the Lyme Disease Awareness day, if possible, and answering questions.
If you need to get hold of her before the time, please let me know and I'll pass you on to her, or get some Auum to you!

Video link about the product is HERE or directly on YouTube if you can't find it.

RJ, who suffers from Asperger's, talks about the oil and what it has done for him, his family, and his pets. I have attended several meetings about Auum, listening to parents of Autistic or Down's syndrome children talk about the way they have their children back since using the oil, about teachers being amazed at the way formerly withdrawn children are able to function, and the relief of pain in many people for different health issues.

The product is different from flax or fish oil, because it is mammalian. And please don't shoot me about the hype around the slaughter of seals!** This comes from the harp seal, which is harvested annually. Using the oil means more of the harvested animals can be used, and is absorbed better in the human body than flax or fish oil.

**Before clubbing me, consider this:  "Non-vegetarians who oppose the seal hunt, while usually hypnotized by animal rights and anti-sealing propaganda, might fail to recognize the process by which the meat they consider "humane" to eat ended up on their plate."  Rest of the article.


**Georgetown Independent Press had a post today. I quote one paragraph:
"He said a warmer Ontario climate will see the spread of Lyme disease caused by black-legged tick. Steer said within the next century the tick will be able to survive as far north as Sudbury while in the past it has been contained to the shores of Lake Erie and Lake Ontario."

-- my bold. Please go to the link above to read the rest of the article, and if you can, post a comment below. 

After the doctor

Had to see the Lyme doctor again on Monday, April 16. These last three months did not go well and I'm not as far along in healing as should have been. Who woulda' thunk, eh?  I've been treated for Lyme disease now for 3 years; one year of which in the States when I couldn't get treatment in Toronto any more.

Been writing the message below on the Blackberry even though we didn't have internet, just to try and keep myself straight. Drove around Lake Champlain through the islands of Vermont, took a ferry, finally in hotel in the Olympic town of Lake Placid after 8pm. We did about 1600 km in 3 days, but we saw very pretty places!

Morning coffee on the balcony, and one taken from the breakfast room

Ok nice. Seems I have another, as yet unnamed, bug.
She said the Babesia symptoms are taking over (chills, pain, lack of sleep, stabbing headaches, joint pain, fatigue, flashing warmth) but the Lyme is out as well (creaking neck and others).

I should have been much better by now and because I'm worse, it might mean another infection or something else (see below). She's changing tack again. Back on Malarone (anti-malaria), and amoxicyllin. And some other stuff. The other protozoa help the spirochetes hide from being killed by the medication.

She also wants to attack the heavy metal poisoning (lead) I have. But maybe not just now.

I have to do detox which will do something to the metal. And check for my temperature to see if my thyroid is wonky. I know my usual temp is low, so when temp is normal I actually have fever. She found that interesting because if my core temp is too low, I'm helping instead of fighting the infection. Then she wants to check the adrenal glands to see if they're up to par before treating the thyroid.

She gave herbal stuff to try and fight the other protozoa.

On another tack, the plans for the Lyme Disease Awareness walk are going ahead! I'm so grateful to everyone helping. Registrations of walkers are starting to come in. If anyone wants to pledge an amount, any amount, or have something to donate to the Silent Auction, or just want to support us in any way, please let me know and I'd be grateful to hear from you. Every dollar helps, every person telling another person helps spread the word and if you have room to put a flyer or notice somewhere, please download and print the image below. Thank you so very much!

TO PRINT: Click on the file and it should be able to be saved to your computer.

 Orangeville is to proclaim Lyme Disease Awareness and Prevention month, our Lyme Car will be ready and be in the newspaper next week and things are heating up.