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.

Monday, December 22, 2014

Merry Christmas and a Blessed New Year!


It is my prayer that all of you who celebrate Christmas will have an enjoyable time with family and friends and be able to leave your troubles behind if even for a short time.  It is so important for us to connect with people.  Let us not allow our chronic illness to define us or rob us of the good things that this life has to offer.  Sure, we may not be able to do everything we would like, but let us find pleasure in the small things, and in the things we are still able to do.  Let us have hope as we begin 2015....for our personal situation, and for the greater Lyme issue.  We have seen some major developments in 2014 with the passing of Bill C-442 in Canada to create a Federal Framework on Lyme Disease, and with the passing of the bill in New York State protecting physicians who treat Lyme.  Change is slow, but it IS happening.  Hope is in the air!

On that note, I wish you all a very MERRY CHRISTMAS!  God bless!

Friday, December 12, 2014

Oh Happy Day!!! The Federal Framework on Lyme Disease Act Becomes Law!

This is the day we have been waiting for for 2 1/2 years!  Today, Elizabeth May's Bill C-442 passed third reading in the Senate and will become law!  Whoooo hoooo!  Check out the news release.



 
 
Elizabeth May has worked tirelessly to ensure the passage of the Federal Framework on Lyme Disease Act.  We are indebted to her!  She and many, many MPs recognized the need for this law due to the spread and threat of Lyme disease in Canada.  The fact that the law was supported unanimously in both the House of Commons and the Senate shows how hard all Lyme activists worked to educate their local representatives by sharing their stories, circulating petitions, writing to newspapers, emailing their MPs, and the list goes on.  Anyone who has done even the smallest thing can claim a part of this great victory!
 
Now that said, I am not so naive to think that things are going to change overnight.  Lyme treatment is divisive in the medical community.  Canadian infectious disease doctors, for example, are opposed to some of the wording in this law and still wish to adhere to the flawed IDSA (Infectious Diseases Society of America) standards of treatment.  Although they will be in the minority when everyone gathers at the table, they still pose a threat with the roadblocks they will put up.  I do believe that the process of creating a strategy for dealing with Lyme in Canada will be a slow one and a bit of a battle.  It may be several years before Lyme patients will really benefit from this law.  
 
This notwithstanding, some hope has now been injected into a situation that was, up until now, pretty hopeless.  For the time being, we may still have to seek help from U.S. physicians and pay for treatment out-of-pocket, but at least there is a light at the end of this long tunnel. 
 
Thank you, Elizabeth May!
 
If you want to watch the second reading of the bill in the Senate, click here.  It's very interesting!
 

Saturday, December 06, 2014

Lyme News

Thank you to a reader of mine who brought this article to my attention.  Please have a read.  It is a much better depiction of the Lyme situation in Canada.

I am so pleased to learn that "a private member’s motion was passed with all-party consent in the legislature Nov. 27 calling for Ontario to develop an integrated strategy on Lyme disease, to be tabled within one year." (Article:  Lyme Warning No Surprise to Sufferers, www.yorkregion.com)

A similar proposal at the federal level, Bill C-442 introduced by Green Party Leader Elizabeth May, has a bit of a fight on its hands.  Although it has passed all three readings in the House of Commons, there is some opposition by a group of infectious disease doctors.  See this link for all of the information.

OK, so this is going to be an uphill battle, but how great that the Lyme issue is finally getting the attention of people who can actually help to provide real solutions.  I'm sure that in my lifetime, there will be major developments and people will no longer be left to suffer with this devastating illness.

Keep praying!

Thursday, November 27, 2014

Misinformation!

Below is an article from thestar.com from November 26, 2014.  Wow, it's great that they are continuing to spread the word about Lyme disease.....and in the winter!  However, there are a few missing details in the article.  Frankly, the article reads like an overly simplified statement that the public health unit might make.  Sadly, the public health unit doesn't have a full understanding of the gravity of this illness.  Within the article, I have taken my "teacher red pen" and added or corrected information.  Please read so that you are not misinformed as well.
 

Ticks carrying Lyme disease bacteria found in Rouge Valley

Health officials warn the public of ticks and Lyme disease becoming "established" in the area.



Health officials in Toronto, as well as York and Durham regions are warning the public after blacklegged ticks in the Rouge Valley tested positive for the bacteria that causes Lyme disease, according to Toronto Public Health.

A statement released Wednesday said public health units searched for blacklegged ticks, which are the only type of ticks in Ontario that can carry the disease, after receiving reports from members of the public.  My LLMD (Lyme-literate medical doctor) told me that he believes that mosquitoes and black flies can carry the disease, too!  Officials then sent samples for testing and identification. Some tested positive.
 
Although the ticks are more likely to infect people during the warmer summer months, Toronto Public Health warn the bugs and the disease “are becoming established in the Rouge Valley,” which has been a low-risk area for Lyme disease.  As far as I'm concerned, Lyme has been here for a while.  What else would explain the hundreds of Lyme patients left with no care after a Toronto infectious disease doctor closed his door to Lyme sufferers in 2011 (due to threats from the medical board)?  This caused a mass exodus of patients to the U.S. in search of an LLMD there.
 
Health officials are advising the public to reduce the risk of getting bitten and infected by taking precautions, including: wearing long-sleeves, long pants, socks and closed shoes; tucking pant legs into socks, and wearing light-coloured clothing to make ticks more visible; using bug spray with DEET on clothes and exposed skin, as well as checking skin and clothing thoroughly after activities in wooded areas.  DEET is not effective in repelling ticks!  I would not rely on it.  However, there is a spray called permethrin that is used on clothing (not skin) which does repel ticks.  Also, you should do a tick check on your body when you come in from the outdoors, as well as shower right away.
 
Toronto Public Health says early removal of ticks will prevent possible infection, as the transmission requires the tick to be attached for at least 24 hours.  There is much controversy about this. Many Lyme specialists say the time is much shorter than this.
 
Early symptoms of lyme disease can be treated with antibiotics.  Very true!  But if you are bitten and do NOT have symptoms, GET TREATMENT ANYWAY!  My LLMD would provide 3 weeks of antibiotics with a bite in the absence of symptoms.  If early symptoms have developed, then he would give 6 weeks of antibiotics.  If you are sick for a long time before diagnosis, then LLMDs would prescribe antibiotics on an ongoing basis until symptoms have resolved. 
 
Symptoms include fever, headache, muscle and joint pains, fatigue, and red bull’s eye rash.  Yes, these are often the symptoms of early, acute Lyme disease.  But not all of us produce these symptoms.  Only 50% of people bitten develop a rash, and it isn't always a bulls-eye rash.  In my case, I had NO early symptoms!  I developed all sorts of strange symptoms, including neurological symptoms, many months later.  (It might even have been a year or two later.)

In this article, there is no mention of the fact that the baby ticks, called nymphs, are the size of a poppy seed!  You might never know it burrowed into you.  And apparently, the tiny ones are highly infectious.

The article also doesn't mention that you may have to FIGHT with your GP or the ER doctor to give you antibiotics!  Some doctors will want you to send your tick to the lab for testing before antibiotics are prescribed.  My advice......DO NOT WAIT!  It could take a week or two to get the lab results back, and by then the bacteria may have spread to other organs.  Insist on treatment right away!  It is not worth the risk!

Finally, be sure to remove an imbedded tick properly, otherwise the tick is more likely to inject you with the bacteria.  See my tab above called "Protect Yourself from Ticks" for the safest methods of tick removal.

The Toronto Star gets a "C" for this article.  They need to do their homework better.  The public needs more information than this.