Welcome to my blog! This is a place of information and hope for fellow Canadians who are suffering from Lyme disease. I want to share with you the knowledge I have gained during my fight with this debilitating, frightening, and misunderstood illness. I hope you will be blessed.

Wednesday, June 27, 2012

The CBC interviews Elizabeth May

Here is a recent interview with Elizabeth May on her private member's bill.  In the interview, it was stated that private member's bills rarely pass.  Let's hope that our Members of Parliament will come to better understand how important this bill is over the next several months.  Again, please contact your MP.  Click here for the interview.

Tuesday, June 26, 2012

It's time to educate our MPs

We've achieved that momentous first step!  An individual in a position of power in this country has taken notice of this horrendous Lyme disease situation, and is going to help us!  Elizabeth May, Green Party Leader, has introduced a truly non-partisan bill, calling for the development of a National Lyme Strategy to address this situation.

But there is still so much more work to do.  If you are reading this, I urge you to contact your MP and tell them that we need to have this bill passed.  If you are a Lyme sufferer, tell your MP your story.  If you are the friend or acquaintance of a Lyme sufferer, tell them that you know someone with the illness and what they have had to go through.  Tell them that this situation needs to be corrected.

This is not just for current Lyme disease sufferers.  It can happen to anyone, at any time, and can literally ruin your life.  This is not fear mongering.  It's just the truth.  A colleague of mine pulled a tick off his leg a couple of years ago.  His car had broken down and he was simply walking in the tall grass by the side of the road in our city here.  A classmate of my son's recently had a tick removed from her scalp.  And then there are many individuals like myself, who don't recall a tick bite.  Ticks are everywhere, and they are particularly bad this year.  Be sure to protect yourself!  (See my Protect Yourself tab.)

Once you are infected, there is NO proper treatment in Canada, and good luck getting a proper diagnosis or postitive lab test from the Public Health Lab.  The ELISA test is completely unreliable, resulting in a great percentage of false negatives.

You can tell your MP that we need:

- Access to proper testing for Lyme disease, from specialized labs (such as IGeneX in the U.S.)
- Family doctors and specialists who recognize the symptoms of late-stage Lyme disease (because right now, they just don't.  That is why so many people are misdiagnosed.)
- Access to the treatment that best suits our condition.  (In most cases, that involves antibiotic treatment longer than the current IDSA recommended 2-4 weeks.)
- Recognition of this illness, so that Lyme patients have access to Long Term Disability while they are recovering.
- Protection for doctors who should be able to choose the treatment that best suits the patient.  (Currently, doctors' licences are threatened if they treat with long-term antibiotics.  That's why you can't find a single Lyme doctor in this country now.  We had 3 not too long ago, but now there are none.  In the U.S., there are now 12 states that have laws in place protecting physicians who treat Lyme disease.)

It's easy to contact your MP.  You can do so by e-mail.  Find the name and address of your MP here.

Thursday, June 21, 2012

Elizabeth May Tables Lyme Bill

Well it finally happened TODAY!  Elizabeth May, Green Party leader, tabled a private member's bill to develop a national strategy for Lyme disease.  I'm ecstatic, and even a little teary.  I can hardly believe this day is here, finally.  It is 40 years since the first diagnosed cases of Lyme disease, in Lyme, Connecticut.  It has taken THIS long for people to finally come to the realization that this is a health crisis.  So many people are suffering, needlessly, due to lack of education and understanding.  I'm not going to even go into the whole political mess of Lyme disease - the corruption, the conflicts of interest, the insurance companies.  I'm just going to enjoy my evening and breathe a huge sigh of relief, knowing that someone in a position of power has finally gotten the ball rolling on this.  Praise the Lord!

On the radio with Andy Oudman!

With Elizabeth May's announcement of her Lyme bill today, Lyme is ALL over the news.  Yay!!!!!!  I, myself, had the opportunity to speak to Andy Oudman on his talk show this morning, London Today, and tell a bit about my story.  There is so much more that could have been said; for example, I really didn't get to touch on the whole political aspect of the illness.  But I'm grateful to have had the opportunity to help educate the public and promote awareness.  It was my first time on the radio, too!  (Sorry, there's no link for this.  They don't archive their show.  I taped the whole Lyme segment on my Mp3, so maybe I'll figure out how to upload that.)

Here is a link to a CTV news report from today.  The tick population is exploding in Canada.  Protect yourself!

Lyme disease experts fear disease explosion | CTV News

Wednesday, June 20, 2012

Progress in the U.S.

Thank you, Congressman Chris Gibson (N.Y.), for spearheading this government action on Lyme!  Read his press release here.

Little by little, there is more awareness of Lyme.  I am thankful that FINALLY some individuals in positions of power are waking up to the gravity of this situation.  I am anxious to see how our Parliament will respond to Elizabeth May's Lyme Bill.  I pray that all of the MPs will make the right decision.  Each and every one of them could be a simple 'walk in the woods' away from where I am.  Ticks are particularly bad this season, and everyone is at risk.

Finally, there is some HOPE of proper care in Canada.

Tuesday, June 19, 2012

Please help us! Very important!

To my blog readers and Facebook friends, could you please take a few minutes to read the following newspaper article.  It is regarding Elizabeth May's upcoming announcement (tomorrow) of her private member's bill to help rectify the awful Lyme disease situation in Canada.  The bill will be voted on sometime between this fall and spring 2013.  If it passes, we could see a dramatic change in the way Lyme disease is diagnosed and treated, and those afflicted would be able to receive appropriate care in Canada........FINALLY!  Please, please, please take a few minutes to contact your federal Member of Parliament and send a note encouraging them to SUPPORT this bill.  I have also included a link to the Parliament of Canada so you can find your MP and his/her e-mail address.  Thank you so much!

Paula

Sooke News Mirror - Lyme disease in private member's bill
Parliament of Canada (See the box "Find an MP by postal code")

Deb Matthews' Response

A very simplistic response by Deb Matthews to a serious situation.  Read the post link below from the blog Meerkat's Heap. 

I e-mailed Deb Matthews recently, and received an e-mail back stating that they were forwarding my e-mail to her Queen's Park office.  We'll see if she acknowledges my letter.  Granted, she DOES have a lot on her plate at the moment.  At least I know that 'someone' received it. 

MPP Bob Bailey will be introducing a private member's bill with another petition in the fall.  Let's hope it gets a better response this time.

Meerkat's Heap: 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 rec...

Monday, June 18, 2012

Lyme in Norway

It has been one year now since my Lyme disease diagnosis.  It was great to feel validated, at last.  Two doctors, in two different U.S. states, affirmed what I had been strongly suspecting for months - that I had a borrelia burgdorferi infection.  My treatment could finally begin!  But we had to prepare ourselves for what we would be facing in the coming year. 

Going to doctor's appointments that are 3 hours from my home, that require a hotel stay, that require arranging childcare for the kids, and that require payment for services has been an inconvenience, I'd say.  Taking antibiotics long-term has been a concern, despite the fact that I understand the need for it.  Having a physician who was so far away was a worry, as well, in case something went wrong. 

To put this into perspective, I remind myself often that there are so many people who travel much farther than me to receive treatment, and many people who can't find ANY care at all for their Lyme disease.  Some people suffer for years before they are diagnosed, whereas I was sick for only 5 months before starting treatment.  I really am grateful for the care I have, despite the inconveniences.  Sometimes I stumble across a video that reminds me of these things.  Here is a news report of a man from Norway who could not find the proper diagnosis and care in his country. 

I hope that one day these stories will be history, and that Lyme disease will be properly recognized in the medical community here, and around the world.

Wednesday, June 13, 2012

Thank you, Marlene!

I discovered a new blog today called Meerkat's Heap.  The owner, Marlene, is doing a lot to help our cause.  Marlene is asking Lyme sufferers in Ontario to send her your name (or even just initials) with some basic information of how long you have had Lyme, where you contracted it, etc.  Please refer to the post on Lymed Out for more information.  We are going to chip away at this HUGE problem little by little, and I believe that in the end, we will win.

Thursday, June 07, 2012

Elizabeth May Has Heard Us!

I learned from the CanLyme website today that Green Party leader Elizabeth May will be presenting a private member's bill in Parliament regarding Lyme disease.  I must say that this actually brought a tear to my eye.  I was thrilled when Sarnia MPP Bob Bailey decided to do this same thing in the Ontario Legislature, and I've been collecting signatures for his petition.  However, this issue really needs to be addressed "nationally".  There needs to be an accepted standard of care for ALL Canadians.  I hope and pray that the government will listen and make the changes needed to end all of the suffering that Lyme disease has caused many Canadians.  Here is the excerpt from Elizabeth May's website:

May: Raising Awareness about Lyme Disease

May is Lyme Disease Awareness Month and Green Leader Elizabeth May (Saanich-Gulf Islands) is doing her part to help.
May will introduce a Private Member’s Bill calling for the development of a national strategy to address the challenges of the timely recognition, diagnosis, and treatment of Lyme disease. The bill also calls for funding for provinces and territories to implement the strategy.
"Lyme disease can be devastating. 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,” said May.
Lyme disease is a bacterial infection that is that is spread to humans and animals through the bite of certain types of ticks, particularly the black-legged tick. Notoriously under-diagnosed and under-reported, the disease can cause serious symptoms if left untreated including recurring arthritis and neurological problems.
The risk of exposure to Lyme disease is highest in parts of southern and south-eastern Quebec, southern and eastern Ontario, south-eastern Manitoba, New Brunswick, Nova Scotia and much of southern British Columbia.
Warming temperatures are leading the increase in range for the black legged tick. Scientists are endeavouring to create enhanced surveillance tools, such as risk maps. A national strategy could support this work and ensure that people can be vigilant in areas where the tick is becoming established. If doctors know that the local risk has increased, they can help with early diagnosis and prevention.
Early treatment of antibiotics can avoid potentially serious long-term disabilities or even death. Chronic Lyme disease requires improved diagnostic testing and treatment.
“Scientists are warning that a warming climate will expand the geographic range of Lyme disease-carrying ticks further into Canada, so it is imperative that we are proactive,” said May.

The CanLyme website has also issued this urgent notice:

Urgent request: To all Canadian Lyme patients, please send a current photo of yourself to be used in a collage of those affected by Lyme disease to from a backdrop as Lyme sufferer Nicole Bottles delivers a speech in Ottawa. Her speech will be given at a press conference June 20th, 2012 at which Elizabeth May, leader of the Green Party of Canada, will announce a new Lyme Bill to be introduced into Parliament that will force the hand of the federal government to do what they should have been doing 25 years ago.

Nicole's mother, Chris Powell is asking that people please send digital photos to her. Also if you can, please attend the press conference in Ottawa, June 20th, 2012. Contact Chris Powell for more details.  Click here to go to CanLyme.

Nicole Bottles has a great blog called Bite Me.  Check it out.  And don't forget to SEND IN A PHOTO!

Sunday, June 03, 2012

Welcome to My Pharmacy

Prior to contracting Lyme disease, I used to take a multivitamin and a vitamin C each day, if I remembered to!  Here is what I take today.

                                                                                                                                                                 
I know, I know.......this looks CRAZY, doesn't it?!?  But these supplements have been recommended to me by my LLMD or by my naturopath.  Do I really need them?  I believe I do, and for these reasons:  my doctors SAY that I need them, I've learned about the purpose behind each one for Lyme healing, AND I'm feeling SO much better after one year of antibiotics + supplements.  There is no way that I'll be going off these anytime soon just to see what would happen!  I need to keep my immune system boosted in the best way we know how, in order to keep the spirochetes in check.

Here is how I keep track of them - the handy, dandy pill organizer.  I used to think that pill organizers were just for the elderly.  WRONG!  I don't know how I'd remember to take them all if it weren't for my organizer.  I fill it up every weekend, and I'm good to go for the week.  I typed up a chart on my computer of all of the medications and supplements that I take at various times of the day, and I use this to help me fill the organizer each week.  But I'm getting pretty good at knowing what goes where, without the cheat sheet.


Now those of you who have joined the Lyme Club will understand all about this and won't question me.  However, if there should be someone else looking at my blog who is not well acquainted with Lyme, I'm sure it will raise an eyebrow or two.  Here is the purpose behind the pills.

The antibiotics - Obviously to kill the bacteria
Nystatin - To help prevent yeast overgrowth while on the antibiotics
Digestive enzymes - To help with food digestion, which is a common problem in Lyme
Probiotics - To replace healthy bacteria in the intestines and prevent c. difficile
Vitamins - To boost the immune system
Supplements to help deal with specific symptoms.  E.g., CoQ10 for heart palpitations, B6 for nervous system symptoms, omega 3 for brain function 
Supplements to deal with specific deficiencies common in Lyme patients.  E.g. iron, magnesium

Thankfully, I take most of these supplements with food, so I just have to remember to have my pill organizer with me at each meal.  As recommended by my first LLMD, I take the pills at the beginning of my meal, after a bite or two of food.  This means that the rest of my meal will land on top of the meds/supplements in my stomach.  I have found that this method prevents the heartburn that I experienced when taking them at the end of my meal.

So where should you purchase your supplements?  I get them from several different places, depending on the supplement:  the drug store, Costco, the grocery store, the health food store, or my naturopath.  I've read that it's best to get "pharmaceutical grade" supplements and not "drug store" brands.  However, I have to balance that information with the COST.  Combined, these supplements are expensive, and have put quite a dint in our monthly family budget.  Buying everything from a health food store would get really costly.  If I can get certain supplements at Costco in bulk, I go for it.  With others, I choose a lesser priced drug store name brand.  I get my magnesium from my naturopath because I want a really good one that will be well absorbed.  It's good to do your research and weigh it out. 

So, as you can see, taking the supplements has a purpose.  I'm not sure yet what supplements will be required once I have finished with the medications.  I haven't thought to ask that question, as I'm not quite there yet.  But for now, I'll continue to follow this protocol.

                                                                Bon app├ętit!



Help CanLyme win $500!

I am sharing some news which will help CanLyme.  This year the Markham Village Music Festival (in Markham, Ontario) has a contest on Facebook.  The Festival Committee will donate $500 to whichever non-profit organization wins the most votes.  We were excited that they added CanLyme to the list and are looking for people to simply vote!

The contest closes June 8th (it was June 4th, but they've extended it) so we don't have long and right now CanLyme is in the lead but we really need more votes.  To vote you need a Facebook account (not hard to open one if you don't have one).

The link is:  https://www.facebook.com/Markham.Village.Music.Festival.

Thanks!  PLEASE VOTE TODAY!

Saturday, June 02, 2012

Humour

OK, is there any place for humour when you're suffering from a chronic illness?  That's a good question.  I suppose it would really depend on the person.  For some, humour in these situations is a great healer.  When I was really ill last year, though, I'm not sure I was in a place where I could appreciate humour.  I was *so* at the end of my rope, hanging on for dear life.  Today, now that I'm feeling about 75-80% better, I am able to chuckle at this map I saw on the blog The Perfect Storm - My Life With Lyme.  I love the arrow pointing to Canada at the top.  Thank you, Lisa, for injecting some humour into my day today.

Click on map to make larger.




Friday, June 01, 2012

Dr. Joseph Burrascano

I am comforted by the fact that my health is being looked after by an LLMD such as the one shown here.  This is Dr. Joseph Burrasacno, a leading authority in Lyme disease treatment.  He gave a lecture recently at Western CT State University, on May 22, 2012.  He covers a lot of the "old" info that we are aware of, but talks about some new testing that sounds hopeful for detecting Borrelia much better.

I'm hopeful that it will just be a matter of time before all of this "intelligence" makes its way into the mainstream medical community and ultimately into the daily practice of physicians.  Members of ILADS just have to keep chipping away at the outdated IDSA guidelines with this new information.  The video and sound are of poor quality in this video, but still well worth the time to watch it.

                                                        Dr. Joseph Burrascano



Big Pharma

I've often wondered WHY pharmaceutical companies would have any problem admitting to "chronic Lyme" when they stand to make millions on long-term antibiotic therapy.  It never made sense to me.  I could understand why insurance companies would have a problem; afterall, why would they want to pay out for the treatment?  Here is one explanation I found on the Under Our Skin blog page.  Makes sense now.

Submitted by John Kreutzer (not verified) on June 7, 2011 - 7:15pm.

To reply to your question about "why would pharmaceutical companies want to suppress the use of long-term antibiotic therapy" the answer lies in the cronic problems that were mentioned in the movie such as MS, ALS, Lupus, and so on. Doctors will tell you that they don't know what causes these "auto immune diseases" and that there is no cure. If Lyme is the cause and you are able to give a cure the cost to the pharmaceutical companies would be in the multiple billions every year.
I have Lyme as well as CNSV, my wife Crones and will be tested this week for Lyme. As this question, how much more money can pharmaceutical companies make on a lifetime of treatment for these two illness and their complication verses simple antibiotics?
By the way, I am not afraid to put my name with my thoughts. I am tired of dealing with doctors over the last 10 years and this movie is a reflection of my personal problems. How about you?