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.

Tuesday, September 16, 2014

What will your treatment look like?

 
I know how scary it is to go to your first appointment with your new Lyme-literate medical doctor (LLMD) and come away with a handful of prescriptions.  So many thoughts swirl around in your head:
  • Are all of these drugs really necessary?
  • Why so many?
  • Can my poor body handle all of this?
  • How am I going to afford this?
  • Am I crazy to do this?
  • Am I crazy not to do this?
Yup, I get it!  But honestly, I think that by the time you visit your LLMD, you're at the end of the line of those who can help you; you've seen every Tom, Dick, and Harry specialist out there.

After visiting two LLMDs and getting the dreaded diagnosis, and after thinking about the scary treatment options ahead, my self-talk sounded something like, "What do I have to lose?  Absolutely nothing.  Could I feel any worse?  Could life be worse?  I'm in pain.  My anxiety is through the roof.  I'm off work on sick leave.  My family is taking care of my house and kids because I can't do anything.  I have nothing. to. lose."

You might be wondering what Lyme treatment may look like for you.  The International Lyme and Associated Diseases Society (ILADS) had just published new guidelines for treating chronic Lyme disease.  Now please don't confuse ILADS with the IDSA (Infectious Diseases Society of America). 

ILADS = good
IDSA = bad 
 
Doctors in Canada are unfortunately bound by the rules of the IDSA for Lyme which is why they get in big trouble if they prescribe long-term antibiotics for Lyme.  (Hopefully Elizabeth May's Bill C-442 will change this.)  IDSA guidelines state that Lyme is hard to catch, easy to treat, and 3 weeks of antibiotics is enough to kill all of the Lyme bacteria.  From my personal experience and the experience of thousands of others, these guidelines are FLAWED.  If you want to understand more about the politics behind all of this, do watch Under Our Skin, an award-winning documentary about Lyme disease.
 
But I digress......
 
To learn more about the new ILADS guidelines, and to read them for yourself, click here.
 
To check out another set of guidelines, created by LLMD Dr. Marty Ross from Seattle, check out his website Treat Lyme and Associated Diseases.  *Dr. Ross is now asking for an inexpensive subscription ($20/year) to access the full contents of his website and treatment manual.  He is trying to recoup the cost of running the site.  It is a very valuable resource and has been so helpful to me.  He also holds free webinars a few times a month that you can sign up for.  He's a fantastic doctor.
 
 
If you're interested in knowing what my own treatment journey was, check out this blog post.
 
The key to getting well is to
1) Obey your physician and follow all of his/her advice carefully. 
2) Persevere; things will improve over time.
 
OBEDIENCE and PERSEVERANCE!
 
All the best to you on your journey.
 

Saturday, September 06, 2014

Another year down!

Wow, I let the summer go by without "celebrating" my Lyme anniversary.  How could I forget about that?  I started treatment on June 1, 2011.  It is now September 6, 2014.  According to my Lyme ticker on the left, I have been in treatment for 3 years, 3 months, and 5 days. 

I'm not really in active treatment right now.  Based on my symptoms, I really do feel that I'm in remission.  However, I do still take 100 mg of minocycline daily for "insurance".  I don't want to relapse AGAIN!  Even in remission, I've never felt 100%.  I hover around 85-90% most of the time in recent months.  But I'll take it!!!  I still get tired (could be from the minocycline), and I am stiff, sore, and achy (could be from some other meds I'm on), but once I get moving I'm OK.

So it was back to school for me a week ago, not as a student but as a teacher.  I've felt good enough to increase my workload a bit this year, so hopefully I won't have any regrets about that as the year progresses.  I do have to be more vigilant about doing everything I can to maintain my health:  eat well, sleep enough, and get exercise. 

Sadly, here is my report card for these this summer:



 

Grade

Comment

Eating well

C

Just too much summer indulging, eating out while on vacation, ice cream treats for the kids (and therefore me), visits to Starbucks, and the list goes on!

Sleeping enough

A

Well what can I say, it was my summer holidays.  Bonus marks here!

Exercise

D

Did I mention that I hate exercise?


I think I've fallen into these bad habits because I'm quite thrilled to be a NORMAL person these days, and not a SICK person, you know?  But I do realize that moderation is the key, and I can still have my cake and eat it too if I plan more wisely and don't overindulge, as well as take the time to bake "legal" treats for myself that are low in sugar and carbs.  It can be done!

If you're trying to get well from Lyme, please DO NOT follow my awful example.  Give your body a fighting chance! 

Today is a new start!  I'm planning to follow a low-carb detox diet for the next 10 days to get myself prepped for losing weight in the coming months, and I'm planning to do some form of exercise every other day.  Perhaps I'll give you my next report card on January 1!

Here are some snapshots of things we enjoyed this summer.


Visited beautiful Niagara Falls
 


Spent an afternoon in picturesque Niagara-on-the-Lake



Visited our Parliament Buildings in Ottawa
 
 

Got lost in Gatineau Park looking for Prime Minister W. L. Mackenzie King's summer cottage
 


Pretended to be a teacher in a one-room school house at the
Canadian Museum of History in Ottawa
 
 
 
Completely blew my diet with a bowl of poutine in Québec!
If you're reading this and don't know what poutine is, it is French fries with cheese curds smothered in gravy - a Québécois creation that can now be found on menus outside of Québec.
 
 
 
Said goodbye to a truly beautiful, historical city. 
So proud to be Canadian!
 
 

Friday, August 08, 2014

Information Galore!

This is a quick post to provide you with a link to all sorts of reliable information about Lyme disease.  It is a page from lymedisease.org, an organization based in California.  Check it out.

questions & answers

Thursday, August 07, 2014

What if your child gets a tick bite?

There is no question that Lyme is spreading here in Canada.  Prior to discovering the cause of my illness in 2011, I had rarely heard of Lyme disease.  This past year, however, a young member of my family has begun a battle with chronic Lyme, not unlike my own battle.  Then, the daughter of a friend developed a bulls-eye rash.  Another little girl I know had a tick bite in her hair.  And I recently learned that the relative of a fellow Lyme patient in town has had a tick bite.  I also know a few people with unexplained illnesses and I wonder about whether they might have chronic Lyme and not realize it. 

The ticks are here to stay, but so are we.  Therefore, we need to learn how to protect ourselves from bites in the first place, and if we are bitten, what we should expect in the way of treatment.

Avoid Getting Bitten

The best defence is to learn how to protect yourself and your children.  Learn how to minimize the risk while outdoors, and how to do a tick check on your body.  Click here for details.

Remove a Tick Properly

Ticks must be removed carefully to avoid transference of bacteria to your body.  You may want to head to the doctor or ER to have it removed, but you can also do it yourself to take care of the situation more quickly.  The longer the tick remains in you, the greater the likelihood of infection.

DO NOT UNDER ANY CIRCUMSTANCES pull the tick out with your fingers, pick at it, squeeze it, apply butter or oils to it, or burn it!!!  This is very dangerous because when a tick is agitated, it can regurgitate its stomach contents into the host.....YOU!  You want to ensure that the tick is removed in the safest way possible, with the head intact, so that bacteria does not enter your body.

1) You can use fine-tipped tweezers to remove it by grasping it as close to the skin as possible and pulling upward very gently.
2) A superior method is the Straw and Knot Method developed by Canadian physician Dr. Ernie Murakami.  Check out the method in this video.  (Advance to 2:05.)  (Note: The first method shown on the video would only be performed by a doctor.)

Save the tick in a jar or plastic bag and send it to the IgeneX Lab for testing.

Get Adequate Treatment

For a simple bite, some local Canadian doctors might prescribe 2-3 weeks of antibiotics, although there seems to be no standard from doctor to doctor.  Some Canadian doctors might administer antibiotics immediately, while others might tell you to wait and see if symptoms develop.  Others may want to send the tick off to a lab for testing or give you a Lyme test first.

Please be aware that any delay in treatment can be dangerous and can give the bacteria (if present) the opportunity to gain a foothold in your body, the repercussions of which can be devastating.

My American Lyme doctor would prescribe 3 weeks of antibiotics immediately for a tick bite even in the absence of any symptoms.  If symptoms have developed, such as a rash, then my LLMD would prescribe 6 weeks of antibiotics.  He would not "wait and see", or withhold treatment to wait for test results.  (Besides, testing for Lyme right after a bite is useless as the body has not had enough time to develop antibodies.)

As a parent, please do your research by checking out reliable organizations such as CanLyme, ILADS, or Treat Lyme and Associated Diseases.  If your child is bitten by a tick and has no other symptoms, ask for (or dare I say "beg", "plead", "demand") 3 full weeks of antibiotics automatically.  It is not worth the risk of the infection spreading to other organs to wait for a Lyme test or to send the tick off to the lab.  If early symptoms are present (rash, flu-like), then ask for an additional round for a total of 6 weeks.  Your Canadian doctor may be willing to do this much for you (though some may not).

If, however, your child has been sick with something mysterious for a long time and you can't figure out why despite several visits to specialists, then have him/her tested for Lyme by the IgeneX lab in California.  Then, find a Lyme-literate doctor in the U.S. who can determine if he/she might have chronic Lyme disease and treat him/her until symptoms are resolved (which may require longer term antibiotic treatment which is not yet permissible in Canada).  Many Lyme patients do not remember a tick bite or get a rash, and the development of symptoms can be delayed by months or years.  This was the case for me.

If your child has been treated in Canada for acute (early) Lyme and received one or two rounds of antibiotics, keep an eye on him/her for the next few weeks, months, even years.  If symptoms are returning, or if new symptoms are appearing, then it could be that the treatment was not long enough to eradicate the bacteria OR that your child has a co-infection in addition to the Lyme bacteria.  Ticks can pass on a whole host of bacteria which cause illnesses such as babesia and bartonella.  These co-infections require very specific antibiotics.  You will need the help of an experienced Lyme-literate doctor in the U.S.

Most Canadian doctors have not been taught the specifics of Lyme disease diagnosis and treatment, and are certainly not equipped to recognize and diagnose chronic Lyme disease and the myriad of symptoms it produces once it goes beyond the acute stage.  Lyme is the "great imitator" and can mimic many other illnesses, sending the patient on a wild goose chase from specialist to specialist.  Infectious disease doctors seem to be very set in their ways with regard to Lyme.  Check out my Lyme friend's recent experience here and you might have a better understanding about what a visit to a specialist may be like.

Additional Information

Here is an excellent report on ABC News entitled Beyond the Headlines: Lyme Disease.  Several victims are featured, and they shed a lot of light on what it is like to have Lyme, and how one must navigate through the medical system on one's own to find the help necessary.  Click the link below.


 
Enjoy your summer, but remember to protect yourself and your children!

Disclaimer:  This post is for informational purposes only and is based on my personal opinion and personal experience.  Consult a physician for diagnosis and treatment options.  I urge you to do your own research, be an informed patient, and be involved in decisions regarding your treatment.