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, February 26, 2013

FAQ: "So why can't you get treatment for Lyme disease in Canada?"

Hi Everyone!

A while back, I mentioned that I had started to read Pamela Weintraub's book, Cure Unknown - Inside the Lyme Epidemic.  I'm 2/3 way through the book now, and all I can say is that it is excellent!  

This book is truly a must-read for anyone who wants to better understand the history of Lyme disease and the controversy surrounding diagnosis and treatment.  Weintraub is a fabulous writer, and she masterfully blends her family's personal story with the science and history behind Lyme.
One of the most common questions I'm asked is.....Why do you need to go to the U.S. for treatment?  Why don't they treat it here in Canada?
Wow.....that's a hard question to answer in a couple of sentences.  There is an entire history behind that question.  Just read chapter 32 - The Lyme Inquisition:  Doctors on the Run.  That will give you some background into the craziness of this illness.  I sat in a coffee shop this morning and brought the book with me to pass the time, and I just couldn't leave until I had finished that chapter.  Gripping.
If you have done any Lyme research at all, you have no doubt heard of Dr. Joseph Burrascano.  He was one of the first big U.S. Lyme doctors to treat chronic Lyme successfully, and also to be hauled up before the New York State OPMC (Office of Professional Medical Conduct) in 1999.  For all intents and purposes, he WON that hearing, and we in the Lyme community have benefitted greatly from his research and expertise since that time.
In 1993, Dr. Burrascano had spoken before a Senate committee on Lyme disease, chaired by Ted Kennedy.  His words were sharp and cutting:
There is a core group of university-based Lyme disease researchers and physicians whose opinions carry a great deal of weight.  Unfortunately many of them act unscientifically and unethically....They adhere to outdated, self-serving views and attempt to personally discredit those whose opinions differ from their own.  They exert strong, ethically questionable influence on medical journals, which enables them to publish and promote articles that are badly flawed.  They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude from these meetings and scientific seminars those with alternate opinions.  They behave this way for reasons of personal or professional gain, and are involved in obvious conflicts of interest....Some of them are known to have received large consulting fees from insurance companies to advise them to curtail coverage for any antibiotic therapy...even if the patients will suffer.  This is despite the fact that additional therapy may be beneficial, and despite the fact that such practices never occur in treating other diseases.
                                                                                                         Cure Unknown, p. 221
I am happy to report that since then, the U.S. has come a long way in its understanding and treatment of Lyme disease.  Yes, there is still a divide in the medical community.  But one by one, states are passing laws allowing physicians to treat chronic Lyme disease with long-term therapy.
Sadly, Canada is currently at the spot where the U.S. was in the 1990s.  Physicians are bound to adhere to the outdated IDSA (Infectious Diseases Society of America) guidelines, or else suffer repercussions from the medical boards.  Canadian doctors who have helped a great many Lyme sufferers in the past few years, have been shut down one by one.  Some have chosen retirement, and others have stopped treating Lyme patients cold turkey.
I think the reason for this lag in understanding is the simple fact that Lyme disease is relatively new in Canada.  It has been working its way northward for many years, and now it is HERE in full bloom.  But doctors here don't know what to do with it!  They have no training in how to recognize it, diagnose it, and treat it properly.  So, Canadian Lyme patients are forced to flock to the States and pay out of pocket to regain their health.
In a nutshell, there's your answer to, "Why can't you get treatment in Canada?"

Tuesday, February 19, 2013

Goodbye biofilms - I hope!

I'm starting on a new herbal regimen in addition to my antibiotics - Banderol and Samento.  I received them in the mail today....finally....after waiting 2 1/2 weeks for them.  I'm both happy AND nervous to embark on this treatment, which will last for 4 months. 

First off, here they are.  Ta da!  They look so lovely and innocent, don't they?  But I hear they pack quite a punch.

This herbal treatment is going to hopefully help me get rid of any Lyme germs that are preserving themselves under biofilms.  Biofilms are a slime coating that exist on some Lyme bacteria, and which antibiotics are unable to penetrate.  Lyme is stealthy.  It finds ways to hide and protect itself, only to come out of hiding at some later date and send the host (aka ME) into relapse.  Banderol and Samento break down biofilms, and are able to kill all three forms of the Borrelia bacteria - the spirochete, L form, and cyst form. 

The downside of Banderol and Samento is that people often report herxheimer reactions (also called die-off reactions).  As the bacteria die off, toxins are released too quickly for the body to dispose of, and symptoms can flare up or you can feel flu-like for a period of time.  I know what herxheimer reactions feel like.  My worst herx occurred 3 days after I started antibiotic treatment in 2011.  I felt awful for 6 days, and then it subsided.  They came regularly during my treatment for about a year, and then finally I was free of them.

Dr. Marty Ross, an LLMD who has a practice in Seattle, Washington, has provided a lot of very good information about Banderol and Samento, and has seen a lot of success with this treatment in his practice.  Check out his website, Treat Lyme and Associated Diseases, if you want to know more about this herbal regimen.

Wish me luck.  I'll let you know how it goes.

Wednesday, February 13, 2013

The Western Blot

I just finished adding a new permanent page to my blog called How to Interpret Your Blood Work.  I've been wanting to write about this for a while, and just now had the time to put my thoughts down.  I feel like I'm back in school doing a research paper!  You sure learn a lot of new things when you have Lyme disease.  It's interesting, but at the same time, I wish I didn't have to be my own doctor, researcher, advocate, etc., etc.  Sigh.

When my IGeneX Western Blot blood test results were sent to my family doctor, she gave them to me and I was unable to make heads or tails of the information.  I searched through the pages, and found the word POSITIVE!  But I really knew nothing about what that all entailed.

I proceeded to do much research to learn about the Western Blot - how to interpret it, the controversy, the history, etc.  What I've written is a summary of my findings and understanding of the topic.  I hope you will find it helpful.

I have written this for informational purposes only.  It is not a substitute for having your test results evaluated by a Lyme-literate medical doctor.

Tuesday, February 05, 2013

Eat, sleep, move!

There's not a lot of new things to share right now.  Life is moving along!  Actually, I'm feeling pretty good, now that I stop and think about it.  This would likely be due to:

1) Eating better (with the goal to lose weight)
2) Getting enough sleep
3) Starting an exercise program
4) Re-starting antibiotics at the beginning of January

I sure had developed some BAD habits in the fall, and now I'm trying to break them.  I think I've FINALLY gotten it through my head that I need a multi-pronged approach to keeping this Lyme in check.  Honestly, if you think you can just stop the antibiotics when you feel well, but slip into your old habits of eating refined sugar and Cheetos, and staying up until 1:00 a.m., then you are likely to have a rude awakening......like I did.

Exercise has been good, but I'm sore!  I'm trying to pace myself, and listen to my body so that I give it ample time to recover from a workout before going to the gym again.  I aim to work out 3 times per week.  I have to keep reminding myself of ALL of the benefits of exercise, besides weight loss.  It boosts the immune system, helps with lymph drainage, gets those antibiotics pumping through the body better, improves sleep, and boosts the mood.  I'm also so amazed and grateful every time I work out, when I think back to how terribly weak I was in early 2011.  As I've stated before, when I was really ill with Lyme, washing and drying my hair was exhausting!  Now, I can do the treadmill for 30 minutes followed by 20 minutes of strength training.  Quite the miracle!

In the food department, my naturopath says that it takes 21 days to break the sugar habit.  OK, I'm on Day 4, and I've already blown it.  But I'm learning that healthy eating is not just a day to day goal, but sometimes an hour to hour goal.  If I blow it one hour, I need to get right back on that wagon and carry on.  Sugar is SO bad for Lyme disease.  It suppresses the immune system, which is the exact opposite to what you're hoping to do.  It also feeds yeast, and the last thing you need in addition to your Lyme is a systemic yeast infection.  I'm trying to use stevia and xylitol in place of sugar.  I can't say that I'm thrilled with stevia in my coffee, but I'll put up with it, or maybe learn to drink it with cream only.  I've also got some recipes for treats made with xylitol, so when I allow myself to indulge, at least I won't be feeding the yeast in my intestines.

I recently purchased the book Wheat Belly Cookbook.  If you haven't read Wheat Belly, I really encourage you to.  And if you feel like jumping on board (and frankly, I don't know how anyone wouldn't want to after reading that) then the Wheat Belly Cookbook is a fantastic companion to the original.  Dr. William Davis, a cardiologist, explains why the genetically modified wheat we grow today is so bad for our bodies, how it elevates the blood sugar, and produces fat storage from the resulting insulin spike.  And in addition to that, inflammation occurs all over the body and manifests itself in various ways, depending on the person.  All I can say is....it is a very, very convicting book!  And it will scare the living daylights out of you if you LOVE your pastas and breads!

I have decided to greatly reduce my grain consumption, and to try to eliminate wheat, although I don't think I'm going to go to the extent of reading every label on every canned good I buy.  If it is an obvious source of wheat, then I'll eliminate it, e.g., bread, crackers, pasta.  The key is to find suitable and tasty substitutes for those things.  Instead of wheat crackers, I've bought brown rice crackers or Mary's Crackers (which Costco sells big boxes of).  Instead of wheat pasta, I found pasta at Costco made from amaranth + quinoa + brown rice.  As my "starch" at diner, I'll eat 1/2 cup of brown rice or barley or quinoa, and sometimes a 1/2 potato, though sweet potato would be better.  The bread is the hard part!  I will occasionally allow myself some sprouted grain bread such as Ezekiel or Silver Hills, though Dr. Davis would say that this is like putting "lipstick on a pig"!  They're still wheat.

I have no idea how a cardiologist has the time to come up with so many lovely looking recipes!  But honestly, if you really do want to embark on a wheat-free diet, or if you need to be gluten-free, Dr. Davis has many recipes for making "bread-like" creations that should satisfy you.  They involve the use of almond flour for the most part:  muffins, biscuits, pizza dough, etc.  I haven't tried any of them yet.  For one thing, I would only be able to eat them at home, as my workplace is "nut free" due to allergies. 

I'd still be interested in knowing what Dr. Davis would think of the spelt flour that I wrote about recently.  It's not made from the same type of wheat we regularly consume, so perhaps it would not have the same effect on the blood sugar.(?)

I'll leave you with an amazing fact from Dr. Davis' book:  Two slices of whole wheat bread have a higher glycemic index than a Snickers Bar!  No....that doesn't mean we should run out and grab a Snickers bar guilt-free, but perhaps we need to re-think our morning toast.