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.

Saturday, December 21, 2013

A little advice for the holidays.....from someone who's been there



I want to take this opportunity to wish all of you a very Merry Christmas and many blessings in 2014! 

I know this may be a very difficult season for many of you who are sick with Lyme disease.  It's such a busy time of year.....shopping, baking, hosting, cooking, visiting.....and some of you are just not able to do it.  The fatigue of Lyme can be crushing.....I do remember!  So, let others do the work for you, and do what you can to find some enjoyment in the season, and in visiting with others.  It's good for the soul to be with others.

Perhaps friends could visit in short spurts over the holidays.  Maybe they could bring a meal that you can all share together.  When I was sick, one of my friends brought a lasagna meal, and we all ate together.  I sat at the table with a blanket around me because I was so cold, and I enjoyed the stories told.  I felt so horrible, physically, but the companionship was wonderful. 

Watch some Christmas movies as a family, and even though you are sick, try to cultivate that family togetherness that your children are craving at this time of year especially.....even if all you can do is lie on the couch.  Invite your little ones to snuggle up with you; after all, it's you they want, not things.

Try very hard to not worry about how all of this is affecting your young family.  Children are so resilient, and they adapt to new situations.  My kids have seen it all in their young lives.....believe me.....from Daddy in the hospital with no hair and 50 staples in his scalp, to Mommy and Daddy both being carted off in an ambulance while police babysat them until Grandma and Grandpa could arrive.....to Mommy being unable to cook, clean, or care for them in the usual ways.  (You can read our whole story here.)
 
With my husband and I both seriously ill at various times for 10 years, one might think that the children would be scarred for life.  This is not true.  If anything, it has made them empathetic and sensitive.  It has shown them the importance of service to others in difficult times, for we certainly had our share of help over the years.  It has shown them the meaning of family when their grandparents, aunts and uncles, and cousins came to help in our times of need.  It has shown them how God cares for us and carries us through the valleys of our lives.  Our kids have continued to thrive, do well in school, and be well-adjusted kids, all in all. 

Just continue to do what you can to show love to your children!  Snuggle, read them a book, watch a movie with them.  Even though you are not feeling well, just give them that reassurance that they are loved, and use this situation as a learning opportunity to prepare them for the inevitable valleys they will walk through in life.

I would like to finish off here by sharing a beautiful song with you by award-winning Christian artist Natalie Grant.  Oh my!  This song has touched my heart so much in the past few weeks and I hope it will touch yours.  It reminds us that as Christians, we have HOPE, and this hope endures even through dark times.  And this hope is not just an optimism, but it is the hope of knowing Christ, and knowing that He promises to be with us throughout our lives, in good times and bad.  He gives us the strength to endure.

I pray that you will know Christ and His hope this Christmas and throughout the rest of your life. 


Thursday, December 05, 2013

A story of hope

I was recently contacted by Cameron Von St. James whose wife, Heather, is a cancer survivor.  Given the nature of her illness and the target audience of my blog, he thought that his wife's story would be a fitting reminder to Lyme sufferers that we need to have hope. 

As I watched the short video, it reminded me of my days as a caregiver to my husband who had cancer, which I wrote about a few posts ago.  The stats for my husband's cancer were not in his favour, and neither were Heather Von St. James' stats.  But we should never place our hope in statistics or the odds, because only God knows how things will play out, and in fact, the Bible states that the outcome is completely in His control. 

And I wouldn't want it any other way!

Does this mean that the results will always be favourable?  No, not always.  Are our prayers always answered?  Yes!  But not always in the way we want.  Regardless, my husband and I trusted God through our illnesses to sustain us, give us courage, provide medical care, and lead us down the right path.  But had He decided that it was time to call us home, well, as scary as that might seem, we were ready for that, too.  Submitting our lives to Him in our suffering gave us the ultimate peace and hope that we needed.

Dear Lyme sufferers, don't lose hope!  The road may be long, winding, bumpy, and sometimes scary, but there is always hope and a Heavenly Father who cares.

Thank you, Heather and Cameron, for sharing your story.  May you be blessed with many more years of good health.  To visit Heather's blog, click here.

 
 


Friday, November 22, 2013

Two good articles

I've noticed quite an increase in media attention about Lyme disease in the past couple of years, and it continues to make headlines.  That's great because the more we educate the public, the better they can protect themselves.  Here is a good article from the online Hamilton Spectator explaining the Canadian Lyme controversy.  Click here.

Another good post I read today was from the blog Lyme MD.  Dr. Jaller is an LLMD in Maryland, and he writes about cases he sees in his office.  He recently posted some rebuttals to "lies" that the medical community spreads about Lyme testing.  It's an interesting read.  Click here.

Monday, November 18, 2013

Already There

It's been a while since I've posted a song, so here is one that I pray will give you hope!  This is a Christian group called Casting Crowns, and I just love their sound and the lead singer's voice.  I suppose it's self-explanatory when you hear it, but the song talks about how God knows our future since it has all been planned by Him.....He's "already there" at the end of the road even though we are still travelling it.  I think back to my days of illness with Lyme, and I could not have imagined regaining my health, and yet here I am, healthy and functional again!  And God knew it all along; He was already there, in my future.  Enjoy the song!


Already There
by
Casting Crowns

Tuesday, October 15, 2013

The other half of my story

I know how you feel.  Really, I do!

I empathize with anyone who has ever been sick, and I empathize with anyone who has ever taken care of someone seriously ill.  I've been both the patient and the caregiver over the past 10 years.

I've survived those trials, not just to tell about it, but to hopefully help others navigate the waters, and to give hope and courage and strength to people in similar circumstances.

This blog is mostly about my Lyme disease story, but I thought I'd give you a peek into my role as a caregiver, long before Lyme appeared on the scene.  And the reason I want to share this with you is to let you know what I ultimately learned from this experience.

So here's the rest of my story.....

Ten years ago (2003), when I was 2 months pregnant with my second child, we received devastating news.  My husband, who was 38 years old at the time, was diagnosed with a rare and aggressive cancer called SNUC - sinonasal undifferentiated carcinoma.  The prognosis for this type of cancer is dismal.  We hoped for the best, but prepared for the worst.

As my baby grew within me, I watched my husband endure nasal surgery and a craniotomy, as well as 6 weeks of daily radiation to the head which left him so ill that he was unable to keep food down.  He lost 50 lbs. along the way, but he persevered and survived the treatment, the necessary evil.

Our son was born as my husband was recovering from this medical intervention, and it seemed to be a new beginning for us.  My husband was regaining his strength, which was perfect timing since we had a newborn and a toddler on our hands.  Between breastfeeding and potty training, life was very busy!  Things were looking up, and we knew that if my husband could reach the 3 year mark cancer-free, then he would be considered in remission.  So we waited......and we hoped! 

Two years went by and life was feeling normal again, when my husband suddenly became ill.  He developed a fever one day that just wouldn't go away, and as the days passed, he became more and more lethargic with clouded thinking.  On the 13th day of his fever, I took him to his GP who had him admitted to the hospital for tests since he couldn't figure out the cause.  Neither could the specialists at the hospital.  My husband was given a routine CT scan in preparation for a lumbar puncture (aka spinal tap), and voil√†....the scan revealed an orange-sized brain abscess, which is basically a pocket of infected fluid.  My husband had surgery the next day to drain the abscess, and spent the next 12 weeks at home on a PICC line, receiving continuous IV antibiotics.

Over the next 5 years, he went on to develop another brain abscess, at least 6 cases of bacterial meningitis, and seizures, all of which required hospital stays of a week or more, and weeks or months of IV antibiotics at home.  Each illness was life-threatening.  My husband's cancer seemed to be in remission, but it became evident over time that the cancer surgery must have left him with a small hole in the floor of the brain cavity.  This was allowing bacteria into the brain, which was causing the abscesses and meningitis.

Each time he was sick, our family was thrown into survival mode.  Relatives came to stay with us when they could, but sometimes it was just me with my boys while daddy was in the hospital.  I continued to work as a teacher, care for my children, visit him in the hospital each day, and took over responsibilities that were normally his in our household, like managing the family finances, car maintenance, and grocery shopping.  In addition, there were medical decisions to make, medications to organize and administer, and doctor's appointments to get to.  Having lost his licence for six months due to the seizure, I became the official family chauffeur as well!  It was so much work, but somehow, I did it. 

The time came three years ago when my husband's surgeon urged him to have surgery again, this time to fix the problem once and for all.  After a great deal of reflection and prayer, looking at the pros and cons and weighing the risks, we decided to do it.  This surgery was even more complicated than the first one, as surgeons had to transplant vascularized tissue from his arm onto the floor of the brain cavity, to close up any leaks.  The first few days post-surgery were touch and go, and ironically, he developed a case of post-op meningitis in the hospital which doubled the length of his hospital stay, but he made it through.  That was in the fall of 2010.  Since that time, he has had one seizure episode in the spring of 2011, and nothing since.  Nothing!  It's been 2 1/2 years of relatively good health! 

To God be the glory!
 
These past 10 years have caused me to reflect a great deal.  People sometimes ask me how I managed to keep it together all those years.  My parents often told me how amazed they were that I managed so well during these crises.  But I'll tell you this.....I did not survive under my own power!  God lifted me up, sheltered me, gave me the ability to endure, and gave me the peace that transcends understanding.  He worked through our family, friends, and church to carry our burdens and help us cope.  And all of this taught me a very important lesson: 

God's grace is sufficient for our trials.
 
Cast your cares on Him, dear readers.  God is love, and His grace is available to you, too, for the forgiveness of sins (first and foremost), for growth in godliness, and for help in time of need.

My husband and I have just celebrated our 20th wedding anniversary, and Lord willing, I look forward to many more years with him.

Monday, October 14, 2013

Happy Thanksgiving!

Wishing all Canadians a very Happy Thanksgiving!  Despite the struggles we face, we must take time to remember the goodness in our lives.  May God bless you, keep you, and guide you on your road to recovery.

Friday, October 11, 2013

Review of "Ticked off - The Mystery of Lyme Disease"

I sat down to watch the highly anticipated (among Lyme sufferers) episode of The Nature of Things on Thursday evening, hosted by world renowned scientist David Suzuki.  We all know that when David Suzuki talks, people listen.  So I was hoping that he would have accurate information to impart to inquiring Canadians.

The episode was well-written, with a very balanced portrayal of this awful illness.  By balanced, I mean this:  Basic, true information was given about how the disease is contracted, where in Canada it has spread, why we are seeing more ticks in our region, what the symptoms are, and how it is ruining people's lives.  The episode spoke about the political nature of the illness, and why physicians are polarized in their opinions about how to diagnose and treat it.  It gave equal representation of the two sides, and perhaps even a little more to those who recognize major flaws in the current treatment protocol. 

The sad part about the whole issue is the lack of scientific studies to back up what so many people, including myself, have experienced personally.  I appreciate what Dr. Harris (LLMD from California) said: "I have to treat these people (with long-term antibiotics), even if the science hasn't caught up yet." 
 
I'm so thankful for the few Lyme-literate doctors who recognize this as a moral issue, and who go out on a limb for their suffering patients, and in some cases have risked their reputations and practices.
 
I was fortunate enough to have been able to see Dr. McShane, who was interviewed for this special, in 2011.  She diagnosed me with Lyme disease and possible co-infections.  I don't know what life would be like for me today if she hadn't headed me in the right direction with treatment.
 
If you missed the episode, you can watch it here.
 

Monday, October 07, 2013

This Thursday, October 10 at 8:00 p.m. on CBC

Here is an excerpt from the CBC press release, on the CanLyme website:

Lyme disease, a mysterious tick-borne illness, is the fastest spreading vector-borne disease in the United States, and over the past decade, the tick that carries Lyme has been spreading across Canada with alarming speed. On Thursday, October 10 at 8:00 p.m. (8:30 p.m. NT), CBC-TV’s The Nature of Things premieres TICKED OFF: THE MYSTERY OF LYME DISEASE, a fascinating and eye-opening documentary that explores a disease that has devastating effects, is often misdiagnosed and mistreated, and continues to be mired in a medical controversy.

I watched one of the trailers, and Dr. Maureen McShane is interviewed for this special.  She is the Lyme-literate MD who diagnosed me with Lyme disease and headed me in the right direction towards recovery. 

Click here to view an excerpt from the program.

Be sure to watch or set your PVR!


Thursday, October 03, 2013

Financial assistance for 2 Canadian candidates




LymeSAVERS is a non-profit charitable organization started by Kevin Sherriff, a Canadian Lyme survivor.  Like many people who have been afflicted with this illness and have recovered, Kevin wanted to give back to the Lyme community.....or you could say, "pay it forward". 

LymeSAVERS has been fundraising for quite some time, and is now in a position to award a bursary to 2 Canadians who are afflicted with Lyme and who are in need of some financial assistance for their treatment.

If you are interested in applying for a bursary, visit the LymeSAVERS bursary application page.  Applications will be accepted until the end of November 2013.

Sunday, September 15, 2013

Back in the driver's seat


Today I had a realization.....a good one!  I finally feel like I am back in control of my life, back in the driver's seat!  Lyme has moved over.  It's not sitting in the passenger seat, nor the back seat.  It's in the trunk!

Yes, it's still with me, but I only notice it once in a while.....like that jug of windshield washer fluid in the trunk that clunks now and then when you take a corner.  But I am driving the car with my hands firmly on that wheel.  And it feels so good to no longer be ruled by the borrelia burgdorferi.

Returning to my teaching job this September has been great, even therapeutic.  I'm busy, my mind is active, and I'm so happy to be teaching my lovely students.  I love thinking about my lesson plans, my units, and YES, even the marking.  I'm honestly so glad and grateful to be able to keep up with the demands of my job.

Exercise is becoming another good routine that I'm putting into place, and that I'm happy to be able to do.  (Wow, I can hardly believe I'm saying this.)  A lot of flab built up since I got sick in 2011!  Laying on the couch, unable to even walk around the block, and feeding yourself comfort foods will do that, right?  It's time for me to get my body back in shape, build up my stamina, and tone those muscles.   

Finally, I feel so good to be getting my eating under control, not just for weight loss, but for good health and a healthy immune system.  For over a week now, I've been counting the "points" of everything going into my mouth (√† la Weight Watchers).  I've set a weight loss goal for next July, so we'll see how that goes.  So far so good!

OK, so Lyme may always be with me, but it isn't (and shouldn't be) the focal point of my life anymore.  It is time to move on from that horror show.  It may pop by for a little unexpected visit now and then, causing me some physical symptoms, but I won't be inviting it in to wreak havoc on my emotions.  I have better and more meaningful things to do with my time.

   Forgetting what lies behind
and reaching forward to what lies ahead,
I press on toward the goal for the prize
of the upward call of God in Christ Jesus.
Philippians 3:13, 14

Sunday, September 01, 2013

A superb book

I have finally finished Cure Unknown - Inside the Lyme Epidemic by Pamela Weintraub.  I've been working on it for at least a year!  There is a lot to digest with this book, and Weintraub has left no stone unturned in this study of the history and politics surrounding Lyme. 

Weintraub, her husband, and their 3 children all contracted Lyme disease, and she tells their story in detail.....from onset of illness, to misdiagnosis, to diagnosis, to treatment.  I'm sure many of you can relate!  (Me, too.)

 
 
Weintraub offers many excellent insights into the Lyme predicament.  One of her statements struck me as I read today:
 
"When it comes to science, questions on methodology are crucial.  Science can be flawed, it can be tricky, Jonas Salk taught me, but science is all we have.  If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science - pure and unadulterated - that will lead us home.  We need science, but different science.  We must travel the road not taken.  Sometimes you just need to start again."  (p. 348)
 
This got me thinking about all of the effort that is going into this grassroots Lyme movement, led mainly by the victims and their families.  These efforts would include support groups, community viewings of Under Our Skin, interviews on local television and radio, letters to the editor, blogs, websites, information booths, Lyme walks, green bracelets and t-shirts, books, petitions, and seminars.  (Wow!)  But what, I ask, are these things accomplishing, apart from informing the public about the dangers of ticks and providing information to those who are sick?  For ALL of this effort, have we truly advanced our cause?
 
Well, perhaps there has been some improvement.  LLMDs are no longer persecuted in many U.S states now due to the passage of laws protecting them.  But there remains the issue of the CDC and the IDSA who have dug in their heels and refused to acknowledge that there is another useful standard of treatment.  And this is despite the evidence of so MANY clinical cases.....myself being one of them. 
 
So, what will it take?  What will change the system?  As Weintraub stated, we are going to need science to prove us right before there will be any sort of real change in the way Lyme is diagnosed and treated.  And so, we must do what we can to support this research and to get it published.  There is research happening as we speak, but we have yet to see a lot of fruit from their labour, i.e., true changes in the "system". 
 
And yet, though this post sounds a bit pessimistic, I truly do believe that one day things will change.  It will just take time.....lots of time.....but unfortunately many people just don't have a lot of time to wait.



Sunday, August 25, 2013

On the home stretch.....again

Summer is coming to an end, and in 9 days I will be happily back in the classroom meeting my new students.  I love summer holidays, but I also love getting back into the routines of the school year.  It has been a lovely summer for the most part with family get-a-ways to Ohio and Kentucky, a visit to a cottage on Lake Huron, swimming lessons, church Bible camp, pool parties, sleepovers, dinners with friends, and of course, school supply shopping.  Whew!  I am so grateful that I've had a relatively healthy summer, not without a few health challenges, but all-in-all it was pretty good. 

Lake Huron afternoon
  
Tranquility

Lest I forget.....there was also the obligatory overnight trip to see my LLMD.  The in-person visits there are getting farther apart, as my doctor is willing to have phone consults every other time, since I've been doing so well.

So here is the progress report.  In early July, I switched to a new antibiotic.  I had been on Zithromax for about a year, but I was hoping that I might start something new to see if I could get past the plateau.  I wanted an antibiotic that was better at passing through the blood-brain barrier, so my LLMD put me on minocycline.  I really wanted to finish up my treatment with a bang!  My symptoms have been very controlled.....sometimes even non-existant.....but this antibiotic has made me SO tired.  Regardless of how much sleep I've had at night, I've been dragging through my days, unmotivated to exercise, and sometimes needing to nap.  This is very unusual for me.  When I spoke to the pharmacist, he confirmed that minocycline can be sedating.  On the upside, nighttime sleep has been pretty good, and I've begun to reduce my dosage of Imovane (sleep medication).  Hopefully, I'll be able to fully wean off of it.


These are my current medications - the minocycline, Nystatin (for yeast control), and the herbals Banderol and Samento.  I've been taking Banderol and Samento since March, and have slowly worked up to 30 drops of each, twice daily.  It's an expensive regimen, but I plan to continue using them even after I finish taking antibiotics, as a preventative measure.  I've done well on them, with no noticeable side-effects.  They are good for biofilms and they target all 3 forms of the Lyme germ.  You don't need a prescription for them.  If you would like more information, go to Treat Lyme and Associated Diseases.  You can read about how Dr. Marty Ross, LLMD, uses them in his practice, and you can purchase them from his website.

It looks like I'm on the home stretch, as far as the antibiotics go.  If everything continues to go well, health-wise, I think my LLMD will give me the go-ahead to stop the minocycline at the end of September, once the stress of starting the school year has passed.  Then, it will be a waiting game to see if my symptoms stay away or return.  When I went off my medications last fall, I was fine for 7 weeks, and then the symptoms started to creep back.  This time, I will have the advantage of the Banderol and Samento to keep things in check.....hopefully. 


This little bottle is the newest addition to my supplements.  It is iodine.  My LLMD has a particular interest in the thyroid, and he has learned from conferences that he has attended, that the majority of people are iodine deficient.  He prescribed this tincture for me which I had to purchase from a compounding pharmacy.  I'm starting slowly and will be working up to the prescribed 4 drops per day.  I wonder what difference I will feel over time.


Finally, it looks as though I will never be rid of my bag of supplements.  I was hoping that my LLMD would say, "You are pretty healthy now, so feel free to ditch all of those pills!"  No such luck.  He took a look at my list and explained how each vitamin/supplement is a benefit to me.  So, every meal's appetizer will continue to be a handful of pills, likely for the rest of my life.  Sigh!

Well, that's about all of the news.  I'll let you know how things go when I'm off the meds. 

My thoughts and prayers are with all Lymies everywhere.....those I know, and those I don't.  May you all find the help you need and find the path to restored health.  God bless!

Thursday, August 22, 2013

This doctor knows the facts!


I came across this interview via Facebook.  This dermatologist, Dr. Day, has her facts straight about Lyme disease!  The interview was apparently aired on CBS, though I'm not sure if it was nationally or just locally somewhere.  Regardless, at least a number of people were exposed to the truth about Lyme.  When you watch, take note of how small those ticks can be.  Protect yourself!

Click here to see the interview on YouTube.


Tuesday, August 20, 2013

Meet my Lyme friend, Brandi

Brandi and I have been in touch many times online over the past couple of years.  Long before I had my own blog, I came across hers and I couldn't believe the similarities in our situations.  It was comforting to find someone who had been through the same thing, someone who could validate all I had been through.  Chronic Lyme is REAL, not a figment of our imagination as some in the medical community would say about us....and even right to our own faces.  In time (maybe decades from now), we will be vindicated by medical research that will no doubt prove that Lyme spirochetes persist beyond a 1 month course of antibiotics.  Thank you, Brandi, for opening yourself up in this way to help others.  We Lymies are very proud of you!

Check out her interview here:  The Boston Globe, August 18, 2013


Saturday, July 06, 2013

Lyme Research Facility in Canada

Allow me to pick my jaw up off the floor!  I can hardly believe it.  The wheels have been put in motion to build a Lyme research facility in Canada.

Rossana Magnotta, CEO of Magnotta Winery, whose husband passed away from Lyme disease in 2009, has created the G. Magnotta Foundation for Vector-Borne Diseases which received charitable status on July 3. 

The research centre is slated to open in 2015 at Toronto's Humber River Hospital. 

Rossana saw first-hand what the lack of research, lack of knowledge, lack of proper diagnosis, and lack of treatment options can do.  We are so grateful to her that she has taken up this cause.

I always knew it would take someone in an important position, with the available funds, and who had been affected by Lyme, to get something like this started. 

Thank you so much, Rossanna Magnotta, for giving Canadians hope.  I hope and pray that this facility gets off the ground smoothly, thrives, and makes Canada a leader in Lyme research and treatment. 

Click here for more information about this exciting news.

Monday, June 03, 2013

Happy anniversary to me

OK, this isn't really the kind of anniversary I want to be celebrating, but how can I escape reality?  Check out my Lyme ticker....the one that's been ticking away on the left side of my blog, marking every year and day that I've been fighting with this insidious illness.

I was actually thinking about the approaching anniversary last week while it was still May, but once June rolled in, I completely forgot!  So I'm 2 days late to wish myself a happy anniversary.

This anniversary is bittersweet, obviously.

On the one hand, I sure am thankful to be receiving treatment for my Lyme disease, given the situation in Canada.  I was browsing through some old e-mails last night that I kept from 2011, and was reminded afresh just how sick and anxious and desperate I was.  Wow!  I've come a long way, baby!

On the other hand, I can't believe it is now over 2 (count 'em....2) years that I have been ingesting antibiotics and dozens of supplements daily, 2 years that I have made bi-monthly trips to an LLMD in a nearby state, 2 years that I've had to try (with little success) to convince the doubters that I have Lyme disease, 2 years that I've tried to spread the word about Lyme, 2 years that I've fought like crazy to be fully recovered.  Wow!  And it seems like I still have a ways to go, baby!

And all of this from a bug bite.  Crazy, no?!

If anyone is reading this who is starting Lyme treatment, here is my best advice:

PERSEVERE!!!
 
Don't give up just because the goin' gets rough......and it surely will.  Recovery from chronic Lyme disease is no walk in the park!  But it will be SO worth it in the end.  I came back from the brink of death, and am now living a productive, happy life once again.  No, I'm not 100% yet, but honestly, who is?
 
It is my hope and prayer that two years from now, you will be able to look back and see just how far you've come and be thankful for your blessings.
 
And to further inspire you, here is one of my favourite singers encouraging you to press on......and keep your eyes on the prize.
 
Eyes on the Prize
by
Sara Groves


 

Saturday, June 01, 2013

Lyme poster to share

Thanks to my friend over at "lymed out" for this fantastic, informative, and easy to understand poster about Lyme disease.  Please share with anyone you think might fit this description.  To see the full size, click here.



Friday, May 24, 2013

Out of the Darkness and Into the Light - Lyme Disease and Mental Health

Here is a post I've been wanting to write for a while to encourage those of you who find themselves in the grip of depression or anxiety, brought on by Lyme disease.

Thankfully, discussing mental health is not as taboo as it once was, with high-profile individuals choosing to speak out about their struggles.  Clara Hughes, a Canadian six-time Olympic medalist, is the first one who comes to mind.  Clara has partnered with the Canadian Mental Health Association and Bell to bring awareness to depression, which hit her during her amateur career.  Perhaps you have seen her public announcements on TV in the past year.  I applaud her courage.

The nice thing about watching Clara on TV is to see that big smile on her face, and true joy and happiness in her heart.  It's a tangible reassurance that a person can emerge from depression and live a happy, fulfilling life. 

Let me tell you what depression and anxiety are NOT:

They are not feelings that can be controlled.
They are not feelings that you can "snap out of".
They are not necessarily caused by one's thought life.
Depression is not just "feeling down" about something.
Anxiety is not just "worrying" about something.

Now let me give you a definition of what they ARE:

Depression:  Depression is a medical illness that causes a persistent feeling of sadness and loss of interest.  Depression can cause physical symptoms, too.  More than just a bout of the blues, depression isn't a weakness, nor is it something that you can simply "snap out" of.  Depression is a chronic illness that usually requires long-term treatment, like diabetes or high blood pressure.  But don't get discouraged. Most people with depression feel better with medication, psychological counseling or other treatment.  (Source:  Mayo Clinic website)

Anxiety:  Generalized Anxiety Disorder, or GAD, is an anxiety disorder that affects about 5% of the population. People with GAD worry excessively and uncontrollably about daily life events and activities. They often experience uncomfortable physical symptoms, including fatigue and sore muscles, and they can also have trouble sleeping and concentrating.

Panic disorder is an anxiety disorder that affects about 3.5% of the population. People with panic disorder experience unexpected and repeated panic attacks. They become terrified that they may have more attacks and fear that something bad will happen because of the panic attack (such as going crazy, losing control, or dying).  (Anxiety BC website)
Researchers know that problems with brain chemistry can contribute to the development of anxiety disorders. Certain neurotransmitters (chemical messengers) in the brain involved in anxiety include serotonin, norepinephrine, and gamma-aminobutyric acid (GABA).  Researchers have also shown that changes in activity in certain areas of the brain are involved in anxiety.  Many anxiety disorders run in families and likely have a genetic cause.  (Source:  Canadian Mental Health Association website)

Honestly, if you have never personally experienced an anxiety disorder or clinical depression, it may be hard to relate.  We all have bouts of worry and the blues; that's just part of life.  But anxiety and depression as mental illnesses go far beyond that.  They take over your body; they take over your life.  They are truly debilitating.  And you just can't control it.

So what does all of this have to do with Lyme disease?  Well, anxiety and/or depression can be symptoms of Lyme.  Doctors who are members of ILADS (International Lyme and Associated Diseases Society) completely recognize neuropsychiatric Lyme.

And it happened to me.

My very first Lyme symptom was a strange vibration in my head which prevented me from falling asleep.  The next symptom was a horrendous anxiety.  These were followed by a host of other physical symptoms which I outlined in My Lyme Story.  Yes, of course I was "worried" about my first symptom, but the anxiety was NOT a result of that.  The anxiety was a stand-alone symptom, an uncontrollable symptom, and an unpredictable symptom.  It was not based on my thoughts.  It was a feeling of severe inexplicable fear that would wash over me, rising up from the pit of my stomach.  It reared its ugly head whenever and wherever it wanted.  I remember the most horrible feeling in my gut came on one time as I was shovelling the driveway!  Perhaps I was suffering more from "panic disorder", which is one form of anxiety.  Coupled with my many strange physical symptoms, I knew that something was terribly wrong with me. 

As much as I avoid taking unnecessary medication, I had no choice but to rely on benzodiazepines for a time (e.g., Xanax and Ativan).  I was thankful for them, as they kept things under control when that awful feeling came on every day.  But when I learned that I might develop a tolerance to them over time with regular use, I chose to switch to an SSRI (selective serotonin reuptake inhibitor) to control the anxiety while my Lyme disease was being treated.

Lyme disease causes inflammation in the body, and I believe that the infection caused some slight brain swelling or caused my neurotransmitters to misfire.  Regardless, the result was dreadful.  I recall searching for answers online, and listening to a lecture by Dr. Daniel Cameron, an LLMD and past president of ILADS, as he discussed neuropsychiatric Lyme.  He said that Lyme patients may need antidepressants as part of their treatment.  In some small way, that comforted me because at least I knew WHY I had developed the severe anxiety.

Slowly the SSRI began to take effect, and over time I was no longer controlled by the anxiety.  At the same time, I was on antibiotics for the Lyme, so they were working together to heal me.  I stayed on the SSRI for a year and a half and then tapered off.  I'm no longer in need of that medication.  I emerged from that dark cave into the light of day!  And like Clara Hughes, I can smile again and enjoy life.

I do have some tips/advice for those of you who may be starting psychotropic medication in conjunction with Lyme treatment:

1.  SSRIs can initially increase your anxiety.  Yup, it's true!  This is why my doctor suggested that I use a benzodiazepine along with the SSRI at the start.  After a few weeks, I was able to drop the benzodiazepine entirely.
2. Sometimes, an SSRI can cause suicidal feelings, in which case you must go to the nearest ER or contact your doctor immediately.  There are many different SSRIs on the market, and you may have to experiment to find the one that works well for you.
3. SSRIs do not have an immediate effect.  You can begin to see improvement after about 2 weeks, but it can take up to 3 months for the full effect to be achieved.
4. For some people, including myself, it can be hard to come off an SSRI because of withdrawal symptoms.  They should never, EVER, be stopped cold turkey.  You must taper off them over a course of a few weeks.  In my case, however, I had to taper off over a course of about 5 months, otherwise I would develop "electric shock sensations" in my head.  This is a fairly rare, but entirely possible withdrawal symptom, which is noted in the literature for SSRIs.  To taper, my doctor wrote a prescription to have the drug compounded into a liquid form, and then I could reduce the dosage gradually down to a miniscule amount.  This gave my body time to adjust to the reduction of medication. 
5. SSRIs can cause weight gain.  You might crave sweets and carbs while on this medication.  So be careful, or else you may find yourself needing to lose 30-40 lbs. by the time you're done.

I would like to add one final note about an unrelated drug, Lyrica.  Have you seen the commercials for that on TV?  Like most drugs, the benefits are advertised in the commercial, and then the LONG list of potential side-effects is listed.  Sometimes the list is so long with such serious side-effects that the commercial is laughable!  Lyrica is a pain medication prescribed to individuals who need particular nerve pain control.  Often, individuals with Fibromyalgia take this medication.  I understand that it greatly helps many people.  A neurologist I saw thought that it was worth a try to see if it calmed those vibrations in my head.  But all it gave me was a horrible depression with daily crying spells.  Let me tell you this....I have never been an easy crier, and I have never suffered from depression, so this was all new to me.  Lyrica made those tears flow like a tap.  No one really picked up on it for a while, but one of my doctors suggested that I go off Lyrica, and the depression and crying lifted immediately and have never returned.  All this to say....read up on the side-effects of all of the drugs you are taking, and keep track of any new symptoms.  Consult your doctor if anything unusual crops up.  It may not be the right drug for you. 

Please know that counselling and prayer were a huge part of my healing as well.  Books such as A Place of Healing - Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty by Joni Eareckson Tada and Prayers of Hope for the Brokenhearted by Jill Kelly, helped get me through those rough times.  Call out to God and let Him wrap His strong arms around you.  Check out my Peace and Hope tab if you're not sure where to start.

I want to leave you with this encouragement.  Anxiety and depression, whether caused by Lyme disease or not, can be controlled or even cured.  Talk to your doctor and seek counselling.  And above all, do not lose hope!

Sunday, May 12, 2013

What has Lyme done for you lately?

How has Lyme disease changed you?  Do you ever think about that?  Has it been for the better or the worse?  As for me.......

Lyme has made me acutely aware of my mortality.  I truly thought I was dying and may very well have if I had not found a Lyme-literate physician.

Lyme has brought me closer to God.  He is ultimately in control of my life and I am so OK with that.  He is my comfort and my hope.

Lyme has made me less carefree about life.  I'm not always sure how I will feel from day to day or sometimes hour to hour. 

Lyme has made me grateful.  I can still hold down a job, and be a wife and mother.  I have supportive friends and a loving family.  And my health has improved immensely in the past two years.  I have lots to be thankful for.

Lyme has made me more aware of my limitations.  Out for a walk last night, I noticed how I just don't feel the same as I used to.  My muscles and joints are sore.  I just feel old.

Lyme has hardened me.  I sometimes think I feel less emotion than I should.....maybe because Lyme disease was the most harrowing emotional experience I have ever gone through and I'm just drained.

Lyme has softened me.  I understand and empathize with others who have a chronic illness and I understand that the way they look doesn't always match how they feel.

Lyme has made me bolder.  Creating a blog, writing to my government representatives, doing a guest spot on a radio program.....these are things I wouldn't have done before. 

Lyme has made me frustrated.  The lack of knowledge in the medical community about this illness, the conflicts of interest, the in-fighting, the roadblocks, and the fact that I have to travel 3 hours away to see a doctor......these things are just so unbelievable. 

Lyme has made me into a helper, a resource for others.  And boy does that feel good!  I'm so humbled to be able to share my experience and help others who need information.  I'm just paying it forward!

All events in our lives, good and bad, shape our character in one way or another. 

Again I ask, how has Lyme changed you?

Check out this video to see the effect of Lyme on this woman's life.

The Evolution of an Angler
 


Monday, May 06, 2013

Under Our Skin

Here is the full-length version of Under Our Skin which I recently found on You Tube.  This is an award-winning documentary which explains the history and controversy surrounding Lyme disease.  It was a long time before I could bring myself to watch the film.  It's a horror story I was living, and it was just too frightening to see my pain reflected back to me in the film.  It's all true.  In honour of Lyme Disease Awareness Month, I thought I'd post it for those interested.  
 
 
 

Saturday, May 04, 2013

May is Lyme Disease Awareness Month

Are you doing anything special this month to highlight Lyme disease?  Are you looking for an event to attend?  Here are a few ideas:






For a list of events in your area, check out this link on the CanLyme website.

In other news, Jim Wilson, president of the Canadian Lyme Disease Foundation (CanLyme) had some great news posted on Facebook today.  Here is the post:

A message from Jim Wilson, President of CanLyme:

Good news is that CanLyme is now fully confident our full research program will be underway by 2015 (and certain projects will commence quite soon) thanks to the wonderful donors who have designated their substantial donations for this project and hard work and many volunteer hours by the CanLyme Board of Directors. We will be also working with pro
fessionals, at considerable cost, to make this happen within the Canadian medical system, despite some resistance.

As you can understand this is a first of it's kind in Canada and much work is involved in setting this up. It may have appeared to some that little was happening, but that was and is not the case. Many meetings have taken place in various provinces with those people we need to make things happen and many more are planned. Research protocol have been almost completed, and medical ethics approval will be the next major undertaking.

Designated funds are held for the distinct purpose the various donor's requested their funds be allotted for, meaning we cannot allocate the monies to our general operating fund, which is always in need of more money.

Many other volunteers are making things happen Canada wide, and for a full listing of what is happening for May Lyme Awareness events in your province please go to
http://canlyme.com/2013/05/03/events/ and you will see that a lot of events are underway. Please attend these events if possible and bring friends!!
 
Thank you to Jim Wilson and the board members of CanLyme who work hard to assist those in Canada with Lyme disease.  We are truly grateful for all you do, in the face of such opposition.  Change is happening and will continue to happen as we persevere in educating the public AND the medical community about this illness.

Tuesday, April 23, 2013

Update on my biofilm treatment

Hello to my fellow Lyme sufferers......uh, let me rephrase that......my fellow Lyme survivors!  Ya, that's much better.  (You know, the glass half-full thing, rather than half-empty.) 

I thought I'd bring you up to date on this latest phase of my treatment.  As you may remember, I relapsed in January after being off antibiotics for 7 weeks.  So here I am, back ON the antibiotics, but I've added some biofilm busters - the herbals Banderol and Samento.

I've been working my way up to the full dose of these.  It sure takes a long time when you start with 5 drops and only add 1 drop every 2 days until you finally get to 20.  I'm almost there.....today I did 19 drops of each (2 times).

So how has it been?

Well to be honest, I haven't felt this crummy in a long time!  I'm very tired on this regimen.  I seem to get a lot of headaches, and once in a while, that Lyme brain fog rolls in.  The other night, I had a hard time sleeping.  I woke up every two hours with a splitting headache.  When I tried to nap the following day, I got those brain vibrations/tremors as I was drifting off to sleep, and it kept waking me up.  Strange, I know.  But many of you will understand what I'm talking about.  So many Lyme patients talk about body vibrations.  It feels like you're sticking your finger in an electrical outlet!

So what does this all tell me?  Well, maybe I'm herxing.  Or maybe I have yeast overgrowth which is triggering cytokine production, causing symptoms similar to Lyme.  It's hard to say.  I've made an appointment with my naturopath so that I can tackle the yeast problem if that's what she thinks I have.

If I'm herxing, then that's great!  The dormant Lyme is coming out of hiding, and biofilms are being broken down, and more of the bacteria are being killed off.  And that's the whole point of being on the Banderol and Samento.  So I'm not going to complain.  I just hope that things settle down after doing a few months of this treatment.  I'm even considering staying on a preventative dose of Banderol and Samento when I'm done, just to police the remaining critters.

If there is anyone out there who may be reading this who has actually achieved remission, I'd love to hear from you!  How long have you been in remission?  What are you doing to build up your immune system?  Are you taking any special supplements?

Before I sign off, I'd like to refer you to a wonderful blog entry I read this week from the blog Infectiously Optimistic.  To find the goodness in chronic illness is such a blessing.  I thank the author for her uplifting perspective.

Friday, April 12, 2013

Carry Me

I've heard the song "Carry Me" by Josh Wilson on the radio a few times this week, and today, it really struck a chord with me.  I know that if this song had been around two years ago when I was deathly ill with Lyme disease, it would have helped me immensely....just giving me that reassurance that God is there, that He cares, that He carries me when I can't hold myself up, and that others share in this journey of suffering and fear and deliverance.   

I've already talked about how Sara Groves, an amazingly talented Christian artist, helped to sustain me through my dark days.  I also gravitated to God's Word.  As I walked through that valley of the shadow of death, I would visualize myself laying down in the green pastures, and walking beside the still waters of Psalm 23.  When worldly medical professionals suggested meditation as a way to deal with my anxiety, I chose to meditate on God's Word exclusively.  Why would I need man-made things to meditate on when the Creator of the Universe had all of the answers I needed?!

I love how Josh Wilson juxtaposes his "sinking sand" with God's "solid ground".  (See Matthew 7:24-27.)  If you are ill with Lyme disease, or some other chronic illness, I encourage you to place your feet firmly on that solid ground that only God can provide.

Here is Josh Wilson's song to encourage your heart.  And click here to read about Josh's personal story behind the writing of "Carry Me".

Wednesday, April 10, 2013

Yolanda Foster.....inspiring

Well you learn something new every day!  I discovered this video today on one of the Lyme sites that I've "liked" on Facebook.  It's of Yolanda Foster giving a very emotional and inspiring speech at the Lyme Research Alliance Gala recently.

Perhaps you've heard.....Yolanda has Lyme disease.  I had never heard of her before as I have never watched the reality TV show she is involved in, The Real Housewives of Beverley Hills.  But I have just discovered who she is married to!  David Foster!  Yup.....our own Canadian music man. 

Yolanda's speech brought tears to my eyes.  (And I'm not typically a crier!)  But it really hit close to home.  As I listened to her experience, it brought back the memories of when I fell ill.  My story was so similar to hers......the fatigue, the brain fog, the clueless doctors. 

If you have Lyme disease, you will really empathize with Yolanda.  If you don't have Lyme, what I hope you will take away from her speech is the seriousness of this illness and the need to protect yourself from tick bites (and mosquitoes and black flies).

Lyme is everywhere.  It discriminates not.  No one is immune.

Monday, April 01, 2013

Spring is here - Remember tick safety

I recently reviewed how to properly remove an embedded tick by watching Dr. Murakami's YouTube video.  Two methods are demonstrated here:  The intradermal blister technique and the straw and knot method. 



I've never had any experience removing an embedded tick.  I know what you're thinking......"Then why do you have Lyme disease?"  Well, perhaps it was a nymph (a baby tick the size of a poppy seed) which fed and fell off without being noticed.  OR....what I think is more likely....I may have been infected from mosquito or black fly bites when I was vacationing up in the Muskoka area of Ontario a few years ago.  Many Lyme-literate doctors believe that these insects can also transmit the borrelia burgdorferi bacteria.

I was recently in a tool store and saw a display for a "Tick Key".  It's a little tool to attach to your key ring that apparently helps you remove an embedded tick.  I messaged Dr. Murakami on Facebook and asked him about the key, and he does not recommend it.  It can leave the head of the tick embedded in you, with the opportunity to transmit the bacteria.

The blister technique is only to be done at a doctor's office or in the ER.  But the straw and knot method is easy enough for anyone.  If you're going camping or hiking, be sure to take along a straw and some thread, and review the technique beforehand.  Remember that the straw is used to simply guide the knot downwards over top of the tick's body, so it gets as close to the embedded head as possible.

And remember:  DO NOT use petroleum jelly, a hot match, nail polish, or other products on the tick.  These may cause the tick to become distressed and regurgitate its stomach contents, including the Lyme bacteria, into you.

Please be careful this spring and summer, and click here to learn how to prevent tick bites in the first place.

Wednesday, March 27, 2013

I never wanted to be a detective


One of the worst parts of Lyme is how it is all such trial and error, and there is so much "unknown" with this illness.  And it's unpredictable.  Even though I'm feeling pretty good on my meds these days, there are days when I'm "off", or when a weird symptom appears.  Last night, I got a bad case of diarrhea after dinner - 3 episodes over an hour or so. 

I tried to analyse the situation:

Is this from the Zithromax?  It can cause diarrhea, but usually I'm fine on it.
Or maybe it's a side-effect of the Banderol and Samento.  I've never taken them before now, so I have no idea what side-effects they will produce in me.
A herx!  Yes, it could just be a herx!  But I've never had diarrhea from a herx before.  Hmmm.
Maybe this is because I started eating well today, and my body is reacting to the lack of carbs and screaming out for sugar!
Or do you think it's yeast?  Yikes.  I really don't want to deal with candida right now.
Could this just be an intestinal virus?  (Hmmm....Not likely....I think I can tell the difference.)
Or worse yet......could this be c. difficile?  Ohhhhhh nooooooo!  You could get really, really sick with that.  Great!

And which is the correct answer?  I have no idea.

But I do know that I hate being my own detective.  What I really want and need is to have my local health care system taking care of me, answering my questions, and doing the detective work.

I guess all I can do is wait it out and see.  I don't think I'll even bother notifying my LLMD.  I know what he'll say anyway - stop all meds until it clears up.  So, that's what I'm going to do for now.

I'll let you know how it goes.

Wednesday, March 20, 2013

lymeSAVERS

I'd like to introduce you to Kevin Sherriff, a Canadian teacher who is battling Lyme disease.  He lives in Whitby, Ontario.  He has written about his struggle with Lyme on his fantastic blog, The Lyme Chronicles.  I feel a bit of a connection to Kevin because I, too, am a teacher in Ontario, and I was diagnosed with Lyme disease by the same Lyme doctor that Kevin goes to.  I know, understand, and have lived his struggles.  Small world. 

Now that Kevin's health has improved somewhat, he has decided to give back to others by creating a non-profit charitable foundation called lymeSAVERS whose mission it is to alleviate the financial burden of Lyme disease for Canadians needing treatment.  Individuals would be helped by means of a bursary, which would allow them to seek treatment that is not offered in Canada.

If you are considering which organizations you might like to support by way of a financial donation, I thought I'd let you know about lymeSAVERS.

The first fundraising event organized by lymeSAVERS is a 5k Run/Walk/Stroll in Whitby on May 11, 2013.  Read the details here.  The evening before the walk, lymeSAVERS will host Dr. Ernie Murakami for an information session on Lyme disease.  Click here for time and location.

Dr. Murakami is a very knowledgeable Lyme-literate medical doctor who has helped many Canadians.  I had the pleasure of attending a seminar by Dr. Murakami last year.  Check out his website, Dr. E. Murakami Centre for Lyme

Thanks, Kevin, for doing such a great job helping other Lyme sufferers!  This is precisely the kind of thing that we need to do to bring some sort of meaning and positive outcome out of our suffering. 

I hope and pray that this horrendous Lyme situation in Canada will change one day, that the medical system will be properly informed and trained, that diagnosis will be quick, and treatment paid for by our public health insurance plan.

Until then, we need to continue to lobby, educate, and help.  That is my intention in creating this blog, and Kevin's intention in creating lymeSAVERS.

Sunday, March 17, 2013

How is remission achieved?

I had an appointment with my LLMD two days ago and we made a little family trip out of it.  It's a 3 hour drive from our house in Canada to my doctor's office in the U.S., provided there is no delay at the border.  We left ample time to stop for lunch on the way at my favourite restaurant, Pizzeria Uno.  (Good bye carb-free diet.  The wild mushroom and cheddar pizza is hard to resist.)  After the appointment, we checked into our home away from home, The Hampton Inn and Suites, and had a disappointing evening and terrible sleep!  Neither was the fault of the hotel.  I had been looking forward to curling up and watching the World Figure Skating Championships but it could NOT be found on American TV!!!  Honestly!  There was basketball and hockey, but NO figure skating.  I was totally baffled by this.  Is figure skating not as popular in the U.S. as Canada?  As for the sleep, well...suffice it to say that hubby and I are not accustomed to squeezing into a queen sized bed!  And our kids are not accustomed to sharing a bed either.  Little sleep was had by all.  Outlet shopping cheered me up a bit the following day.  (Note to self:  Next time, leave hubby and the boys somewhere while you shop in peace.)

Onto more important things......the doctor's appointment. 

So here I am in mid-March feeling pretty good on my Zithromax, Banderol and Samento.  So far so good.  The symptoms that crept back in early January have abated.  I'm tapering off the sleep medication (again), and looking forward to some good months in the spring.

Which begs the question:  How do I get into remission and STAY in remission?

When Lyme disease strikes and you're really, really ill, all you can think about is how to feel better.  Hopefully, that is eventually achieved.  But when you're there, at the end of your treatment, the next step is to figure out how to remain in remission.  Some people get there, others do not.  It's quite a mystery for even the LLMDs.

Doctors say that if you had Lyme disease for more than 1 year prior to starting treatment, it is highly unlikely that the infection will ever be completely eradicated from your body.  Remission is the most you can hope for. 

My LLMD said that I was a borderline case, so it's hard to say.  I had symptoms for 5 months prior to treatment, but the bacteria was in my system for much longer than that.  How do I know?  Well, the symptoms came on in January of 2011 - not exactly tick biting season.  I had been hiking through brush at a provincial park the previous summer, and had been devoured by black flies several summers earlier up at a cottage.  The bacteria was clearly dormant in my body for a time before producing the symptoms in January.

So, can I ever eradicate the bacteria?  I don't know.  Neither does my LLMD.

The fact that I relapsed in January of 2013, after 18 months on antibiotics followed by 7 weeks off them, leads me to believe that the bacteria was not fully treated.

Dr. Marty Ross of Treat Lyme and Associated Diseases, whom I contacted to ask a question about relapse, said that I should deal with biofilms for the next 4 months, so that is the plan.  I'll continue the Zithromax, Banderol and Samento until the end of June, and then decide if I want to try going off everything cold turkey or if I want to take a preventative dose of Banderol and Samento every day.  I guess we'll see.   

My own LLMD (not Dr. Ross) said that he has patients who have been on antibiotics for 20 years!  He said that I may need to pulse the antibiotics periodically if symptoms come on.....perhaps for a couple of months at a time.  I asked him about the so-called "super bugs", which can be a concern for those on antibiotics, and he said that he's never seen that in his practice.

So, the future is unclear.  I hate that.  I'm a planner, and I just don't like not knowing how my health is going to hold up as I move into the future.

A fellow Canadian Lyme sufferer, Christa Vanderham (whose incredible story you can view here), posted this yesterday:

"Don't fret.
For this leads to wrong-doing...
Rather, wait on the Lord instead."
-Psalm 37

Thanks for the reminder, Christa.  I needed that.

Tuesday, March 12, 2013

Low carb high fat. What?????

Sometimes I really have a love-hate relationship with food.  I love my sweets and carbs, but hate how they make me look and feel.  It's the food paradox.  We need food to fuel our bodies and keep us alive, but the very thing that sustains us can cause illness, obesity, and even death.  What it boils down to is knowing which foods bring health, and which foods cause illness.

This seems so simple, doesn't it?  Well of course we know which foods are BAD for us!  But do we really know the whole story?  Sure, the Mars Bar is bad. The Starbucks Java Chip Frappuccino (my favourite) is bad.  No argument there.  But did you ever consider that all of the whole grain breads, rice, and pasta that you consume could be a major culprit in your health woes and weight problems?

I've been researching a new approach to food:  low carb, high fat!  It sounds so wrong, doesn't it?  But the research and clinical evidence is in.......people lose weight and become healthier when they limit or better yet completely eliminate carbohydrates (in the form of grains), and increase good fats in their diet, e.g., olive oil, coconut oil, and yes....butter!

I know......it's the opposite of what we have been taught by all of the "experts".  I wonder, though, how these experts would explain the obesity epidemic in North America.  We're watching our fat intake and eating our 12 servings of grains a day recommended by the Canada Food Guide.  So what is causing these health problems?

If you want to explore this topic, I urge you to check out The Diet Doctor.  This is an excellent website created by Dr. Andreas Eenfeldt of Sweden.  The videos on his website are well worth exploring.  Watch his lecture called The Food Revolution (below).  It's a 1 hour lecture on the low carb high fat diet - how it works and why it works, not just for weight loss, but for optimal health for everyone.

 
 
The most difficult part of eating this way is knowing how to replace the grains and sugars in your diet.  Well, I suppose the sugars don't really need replacing.  But something has to take the place of the grains.  Dr. Eenfeldt explains the diet in detail here.  (And by "diet", I don't mean a weight loss plan per se.  I mean a way of eating for optimal health.  The weight loss is just an added bonus!)  This concept isn't new to me.  There is a similar program in North America called Maximized Living which I am acquainted with.  But before now, I really wasn't ready to radically shift my eating habits.  I still don't know if I'm 100% ready, mentally, but I know I need to do something to reverse the weight gain I've experienced since starting my treatment for Lyme disease.
 
If nothing changes, then nothing changes.  So I'm going to give this a shot.  In recent weeks, I've been collecting grain-free recipes to use.  Thank goodness for Pinterest!
 
If you are recovering from Lyme disease, you may want to consider a diet such as this.  The elimination of carbohydrates and sugar helps with inflammation in the body, and improves immune function.
 
I realize it may be hard to think about changing the way you eat if you are struggling to overcome your illness.  I was there, too.  Two years ago, I had neither the strength nor the ability to make such a change in my life.  But perhaps consider just a few small changes or shifts that might be manageable - give up the sugar, cut back on your grains, increase your good fats (olive oil, coconut oil, and butter), and eat plenty of protein and vegetables.
 
I already know I'm going to have some challenges!  As I write this, I'm hungry!  Clearly, I've not eaten enough fat and protein today, because one shouldn't be hungry on this plan.  And perhaps the steamed rice that came with my stir-fry at the food court wasn't the best option.  (But honestly, it was the "least bad" food I could find in the food court!) 
 
So tomorrow is a new day.  Baby steps.  

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?"