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.

Chronic Lyme on Dr. Phil today

Deadly Consequences

Dr. Phil’s guests say they’re dealing with serious illnesses that could have deadly outcomes. ...  former model Stephanie Vostry, 25, says that she suffers from constant pain and seizures caused by what some doctors believe to be chronic Lyme disease, and others wonder if she's faking. With natural medicine providing minimal relief, hear how she says she's turned to self-medicating to dull her pain. Plus, chronic Lyme disease hits close to home for a Dr. Phil staff member and a San Diego weathercaster.

The blurb above was taken from the Dr. Phil website. The show might be online at this link:
http://www.drphil.com/shows/show/1826 after it airs.
Or try this link for clips of the show.

==> Added later: the uncensored discussion after Dr Phil's show. At around the mark for 1:18 he mentions a key element that was left out of the show because of time constraints. The link is
Uncensored Dr Phil    <==

Meanwhile, our plans for the Lyme Disease Awareness day are going ahead! We still hope to get more sponsors to help with T-shirts, prizes and the like. Every little bit helps and adds up in the end. Many people said they want to take part. One family will be visiting from BC (British Columbia, Canada's province on the west coast of the continent), so we can truly say we're covering Canada at the Lyme Walk in Brampton!

Yesterday I had notification that the city of Hamilton will add my request to proclaim May as Lyme Disease Awareness month, to their agenda. A large group of people will be coming from Hamilton and surroundings to take part in the walk.

Yesterday I was invited to talk to a group of women at a church. They were flabbergasted that we struggle so to get treatment, and that doctors usually don't know how to diagnose, test or treat for Lyme disease. They are planning to launch letter-writing campaigns. Thank you, ladies, and also for the monetary support that will go to help out with the Lyme Day! 

I'm so grateful for all the offers of help, the people passing on flyers and talking to their families about this disease, and for all the support. Thank you!

Pink Magnolia, Brown Magnolia

On Monday last week, the traumatic week when I had to decide about disability or resignation, our Magnolia was proudly in bloom. It was so lovely, but at least a month earlier than usual.

On Wednesday, when I officially handed in my resignation, the magnolia's blooms were brown.

Tomorrow is my last day working at one of my jobs. I don't want to leave the people. But Lyme made the decision. However - if it wasn't for this job, I might still not have been diagnosed! Their support and love through this time mean more than I can ever say.

We all know it is already warmer in this area than usual, and ticks are already out and active. Today's Huffington Post has an article:
Global Warming May Bring More Lyme Disease, Ticks

On Saturday, March 31, there was a run to help pay for the medical bills of a 16-year old with Lyme disease, Vanessa. She is being treated by the doctor I'm seeing in the States. Lots of people braved the cold to take part and they were all in good spirits!

Pictures are here: Vanessa's Run

Interesting fact I realised this week. Vanessa has lost her hair. Kevin has lost his job and his bed. I've lost my sense of taste, my appetite and half my mind.
(Kevin's blog)

We Lymies all lose stuff, have to give up things, have to change dramatically. But our families are being dragged into it with us, and the ones I know, are all grateful to have good spouses or families to help them through! Without that, we would have been in a great mess.

My husband and friends: Thank you for standing by me, for laughing along with the mistakes and forgotten issues; for the love and prayers, making a fuss of any new events, and quietly sweeping up the dead blooms as they drop, sorting out the pills for the week, making a salad for lunch to entice me to eat and silently closing the gate I've left open again.

Lyme bites another piece

A long time since the previous post from Feb. 29. This was a difficult time, having to come to terms with the lack of brain function and the impact it has on my daily life. Not that it bothers me so much, sort of going through the day in oblivion in a way, unless someone points out another mistake, oversight, wrong word, forgotten task or appointment. But I'm desperately sorry for my good husband who supports me without a word of complaint. Sure we make fun of the Lyme Brain / Jello Brain; why not? Easier to laugh than sit in a corner in a messy heap!

The two weeks I had to take off from the other job didn't do much. I had time to visit some friends, but really, the time was more spent with doctors again, and trying to make a decision - something that I just don't seem to be able to do any more. Went to see my GP and had email contact with the Lyme doctor. GP wants to send me for tests with a neuropsychologist, to test the brain function and lack of short-term memory. The Lyme doctor wrote back:
"You would have to leave work and take disability."

There. Written down. That means it exists. And I can't deny it any more. That Lyme had bitten hard and deep, and is sitting in my brain and there's nothing I can do about it right now.

Friends who went the same route, losing jobs, being fired, or being laid off because of Big Bad Lyme, all say the same thing: You will not get better before you take the time to rest completely, be away from stress, and let your body allow the medication to work. Also, if I don't follow Lyme-doctor's instructions, she has the option of refusing me treatment.

Fact is, I need to work to pay for medication. Simple as that. And also to get out, to see the sunshine, to see people, and not to just wallow.

So, the letter of resignation is written. A friend checked it over to make sure it makes sense. And then the wheels will start to roll again. Nobody is irreplaceable; that's not the issue. It is just that I truly loved and enjoyed the people where I worked, made friends, became involved and became a part of the history. It hurts to leave.

BUT!!! Something good has happened! 

Being an organ donor has been a large part of my life, and I've been outspoken about that since I was 12 years old. When the Lyme doctor told me I can now never donate my organs, it was a huge blow. Don't know why it hurt so much, but it was worse news than the fact that I also had Babesia and Bartonella infections. Every time I told someone about it, the tears would flow and I couldn't control it.

A good friend in South Africa said she is getting her family to be organ donors now, to take my place -- it was the biggest gift you could give me. Thanks, Bat.  Still get all vinegar-eyed when I think of your gesture.

However, I've called the University of Toronto a few days ago and spoke to the Anatomy department. Today I mailed back the signed forms they sent me, to donate my body to science. I added a large note that it is specifically for Lyme research if possible, and when I called, the lady said she'll put that on my file as well. Hopefully, if I can't help someone through donating organs, the ravages Lyme leaves on my body, will be able to help the studies in future.

I always said I wanted cremation, and no grave, but a Tamarisk tree planted somewhere, with maybe a bench for people to rest on. This is part of the process, and it feels as if there's a route to take again, where I felt rudderless and adrift, not being an organ donor any more. Strange, really. But onwards now!

This March might be the first one in history that we wouldn't have snow in this area. It is already warm. The ticks are already out and about.

Please be safe, be aware, and tell people about our Lyme Awareness Day on May 19th! 
 And yes, I have more buttons, bracelets, pins and the like left if you want to buy one or more.

Ok. here goes. I'll try to be brief. Lyme Brain strikes again. This is not to gather sympathy or anything, just a statement of facts and not knowing how to go ahead for the immediate future. Actually, I don't even know where to start so will just stumble on. And maybe my tale helps someone else on this hellish journey of getting rid of Chronic Lyme Disease. [Incidentally, why do we give it the "honour" of writing the words with capitals???]

Some friends know that I've mentioned about screwing up things - burning food, forgetting pots on the stove, not defrosting or cooking things properly, messing up recipes I've done for decades which were in my brain without thinking. Hubby would tell me I'm asking the same question several times; I can't follow certain movies or programs, and am scatter-brained where I was focused before. Hence, checking and double-checking everything, especially for my jobs (two different ones). I find it extremely hard to retain new information and to make things "stick" between reading and doing without checking back several times. And even then still mess up more times than not. I'm aware of some of these things if people tell me, other times I'm blissfully unaware. Makes me crazy to think I've checked something and then there are still mistakes. Major ones. 

The doctor in the States who is treating me, is trying to bathe my brain in Vit. B to regain some functions and creating more neuro-paths. I thought things were improving; I felt brighter, but still trouble with the things as listed above. Can't tell jokes any more, for one thing, which was always part of me. I don't know if I'll ever recover all that was lost. The pain is nothing - that goes with the damaged and dead nerve endings in the brain and elsewhere in the ole bod.

So, I've just had a meeting with my overseer. It seems on Sunday there were major issues with the overhead slideshow I'm supposed to do for the congregation. I create printed bulletins (or order or service, or programs) to list which hymns are sung that week, when there are prayers, etc. From that I do the slideshow which has the words of hymns, plus the words of prayers if given, the dedication, etc. I check everything two or three times to make sure it is all there.

Seems on Sunday I've left out two of the three hymns completely, for one there was only the chorus part, and there was no dedication.

For the e-newsletter, there were announcements left out. 

In other words, I screwed up. Bad. And I thought I'd checked everything so carefully.

So, I asked what they wanted to do. They are very good at supporting me, but if I don't do my job, they should not be paying me. I explained about the early Alzheimer's symptoms, at which point I broke down in tears. I don't want to know that my brain is so damaged. It was easier to be in the wheelchair last summer, or use the walker, because then people were naturally helpful or attentive. With the brain damage, it is all inside. Invisible. And I'm less than human. Less than me. Less than what I was or want to be. Invisibly disabled.

It is not fair for the congregation to struggle, for the minister to have to think on his/her feet when something doesn't come up on the wall.

I offered to take a leave of absence; and that they would be perfectly fair to let me go if I don't do my job. I offered to resign.Whatever they decide is fine by me.

I trust none of my own decisions right now. So - we wait to hear.

On the lighter side - you know you have Lyme Disease when:

•  You look forward all week to a boring evening at home.
• You can't wait to get into your long flannel pjs and crawl into bed with an electric blanket, socks and a travel mug of hot tea (and it is summer or the heat is on 22 C in winter).
• One shelf in the fridge is filled with medication. 
• It takes longer to rest than getting tired. 
• When people say: You look so good. How can you be sick? 
• When all the pharmacists and lab workers in town know you on a first name basis. 

Lyme Day Walk - how far?

Goodness, this Lyme Awareness Day Walk is really taking off, and I'm so grateful for that, for the support and awareness circling out to others!

Right now we are hashing out the registration forms, so that people can register for the walk, order T-shirts if they want them, and get things firmed up. Hopefully registration forms will be on the LymeWalk website by this weekend, Feburary 12th.

But -- and this is the question from many --- how far is the walk? Is it a race? What are the prizes? What is the time limit?

No, it is not a race, as such. No time limit. No expectations, other than your presence and sharing the awareness with others. I'm hoping to offer a good prize to the person bringing in the most funds, though, through collecting donations from friends or family, but that's just a thought at this point and not a firm part of the planning.

The "formal" walk part will take around 20 - 30 minutes or so. See map here below or on Picasa (click the magnifying glass to enlarge on Picasa). Afterwards, there will be prize giving and draws, fun and time to talk to Lymies and families, sponsors, the artist who designed the T-shirt, play the Penny Sale, join the kids in a sack race or face painting, and just enjoy the day. I'm hoping someone from CanLyme will be there as well to share some information. Make sure you talk to the vet who will be there, about Lyme Disease in pets - they can be treated!

However, there are paved paths all around Chinguacousy Park. Those who want to walk more, or even jog a little after the Lyme walk, would be free and welcome to do so! It is a lovely park with lots to see. Remember to visit the greenhouse - it is free. Take the kids to the barn and the petting zoo. Walk around the ponds and enjoy sitting on the grass, looking at the ducks and other birds. You are welcome to bring a picnic and propane bbq if you wish. We are planning activities and fun for kids, and during the afternoon, after our event, the park will have a Midway, so families can really make an outing of it!



Ching Park map - click for larger view

 EMOTIONAL SUPPORT
Truth is, this Lyme Awareness Day is supposed to be a family outing, a time spent learning and sharing about Lyme Disease, of relaxing in the park with a picnic after the walk, and for Lymies and their loved ones to get the emotional support we so desperately need from each other. To know we are not alone, that others are suffering and struggling as well, can mean as much as a load of medication and supplements. And for those who are caregivers and friends, helplessly watching a family member in pain or struggling, this gathering is a way to feel they are doing something instead of just standing by.

Last year when Kim and I went to Ottawa in May 2011 to attend the Lyme Rally on Parliament Hill, it was an uplifting experience for both of us (and the others!) to suddenly see other green T-shirts, to talk and hear stories, and to say, "me too!" Together, we can face this battle. And teach others about it so that they might avoid the struggle we've gone through to get diagnosed, treated and well again.

THE DREAM
Any funds raised on May 19th will be donated to the Canadian Lyme Disease Foundation. Their mission is to educate, to research and to teach about Lyme Disease. The dream is to one day have a testing facility in Canada where people with Lyme symptoms can go for testing, without having to face the battle of disbelief, scepticism and "it is all in your head".

Taking part in our Lyme Awareness Day, be it walking or as spectator, paying the registration fee or adding a few dollars as donation, bring us closer to this dream. Who knows, the next person you talk to, might have undiagnosed Lyme disease now or in the near future, and your information might help them on their journey.

Brampton Proclaims Lyme Awareness Month!

Very excited! I've just had confirmation that May 2012 will be declared Lyme Awareness Month in Brampton, Ontario! This is very good news indeed. Means that companies or groups supporting our Lyme Awareness Day on May 19, can get in on the action, posters and more.

We are working on registration forms, but people are already visiting the LymeWalkBrampton website! We put the site up early so that everyone who wants to take part, can book the date of May 19 on their calendars, and be aware of the plans happening.

Support from all levels has been wonderful, and I'm so grateful to volunteers, friends, helpers, contacts, connections, city Councillors and others for their immediate and gracious help.

The Lyme awareness items arrived yesterday - necklaces, bangles, silicone armbands, key rings, even teddy bears wearing ribbons with the green insignia, messages of courage, hope and support abound. Pictures will be uploaded and friends and family can already purchase them if they like. If we sell all before May 19, we'll just order more of the most popular items. Prices range from between $1 for the silicone wristbands to $10 or so for the Tiffany-style bracelets.  All extra funds will be donated to the Canadian Lyme Disease foundation at the end of our Awareness day.

Swedish Lyme patients have to go to Norway for treatment

Picture from the Swedish radio page linked below

Pioneers Abroad Save Borrelia* Patients.
(Swedish Radio program - translated from this link. Also see the original post on this blog.)

Thousands of people suffer badly without receiving any help from Swedish health care.

After years of fruitless attempts to get treatment they turn abroad and get cured. But the patients have to pay the expensive treatments themselves since it's not recognized and approved by the Board of Health. They discard the treatment as dangerous and unscientific. Every year around 10 000 Swedes get Borrelia after being bitten by ticks. Almost all seek help and are cured by a brief round of antibiotics, if given immediately. But there are also several who do not seek help immediately, so the infection gets a grip on their bodies. A while later they get chronic Borrelia, an illness which, according to the Board of Health, doesn't exist. But in Norway & Germany patients are given antibiotics for up to a year, and get cured.

2008 was a tough year for Andrew, 45-year-old craftsman. His father passed away, he had stress at work, young children at home and his summer was ruined by a virus infection. During the autumn pain began in his arms and legs, and he sought treatment.

Antibiotics should never be longer than 30 days. That is the predominant route of many countries' health authorities. In Germany and at the Arena Clinic Borrelia Center in Oslo the patients are given aggressive antibiotics for a total of one or up to two years. Deadly, claims Welfare. - Not so, says Margaret Gabrielsson, who has just been declared healthy after two years of treatment.

Margaret and Andrew's stories are similar to that of many others. They are met by skepticism and neglect here in Sweden and so they go to the clinic in Oslo where they are met by listening, understanding health care professionals who take their concerns seriously. A whole new world opens for those Swedish patients.

Arena Clinic Borrelia Center in Oslo has helped thousands of people diagnosed with chronic Lyme disease to become healthy. But the costs mount up. Treatment is expensive. Blood sample analysis, dotors' visits, alternative treatments and not least, the aggressive antibiotic regimens were given either intravenously or in tablet form. A typical treatment takes about a total of two years and then the patient has been out of pocket somewhere between one hundred thousand and two hundred
thousand dollars.

In Norway the health authority pleased is pleased by dr. Rolf Luneng's work, but his clinic would never be here in Sweden. Anders Tegnell is Head of knowledge management at the National Board. It is he who gives out guidelines and guidance.

I wonder why Luneng's clinic is not allowed to be here in Sweden.

(*Borrelia: Lyme disease, or Lyme borreliosis, is an emerging infectious disease caused by at least three species of bacteria belonging to the genus Borrelia.)