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.