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.

My Lyme Story

I’ve always been a rather private person, so baring my soul about my Lyme disease is not easy.  But I am compelled to tell you my story in the hope that someone else may be helped by it.  If it weren’t for information I gathered from the media - the radio, the internet, magazine articles, blogs - I do not believe I would have any quality of life today.  When the Canadian medical system could do nothing for me, I had to find my own solution.  And I did. 

Here goes...

How it all began
(My symptoms are in bold for easy reference.)

In December 2010, my family had just gone through a very emotionally draining time relating to a surgery that my husband underwent, which resulted in some serious complications.  After Christmas, he was stable and our lives seemed to be on the path to normalcy.  That is when my symptoms first began. 

When I would fall asleep each night, there was a “flutter” in my head or brain as I drifted off to sleep.  That’s the only way I can describe it.  I thought it was very strange, but just ignored it as it wasn’t causing me any sleep problems.  I also started to get a vibrating feeling throughout my body during the daytime, especially in my legs.  I searched the internet for answers to that, and all I came up with was that it could be a perimenopause symptom. 

A few weeks later, about mid-January 2011, that little “flutter” in my head became a very strong “pulsation” one night that actually prevented me from falling asleep.  It was horrible.  My head or brain started to vibrate whenever I was on the verge of sleep.  Sometimes I drifted off to sleep, but I would wake up a short time later.  This continued all night long.

After several nights of this insomnia, I became exhausted and took a few sick days from my teaching job.  Little did I know that I wouldn’t be back to work for more than a year. 

I went to my family doctor and she had never heard of anything like this.  She set up a referral to a neurologist, and prescribed some sleep medication for me.  The medication helped a little, but my sleep was still very broken.  I was absolutely exhausted during the day.  I had never had sleep problems before, even through the stressful times of my husband’s many illnesses. 

Frightening thoughts raced through my head:  Was this the start of MS?  Parkinsons?  ALS?  CJD?  What could be causing these pulsations in my head?

Sinking deeper
Things got worse by February 2011.  I became so fatigued and had a general malaise.  I was still off work.  My doctor was giving me sick notes, a few weeks at a time.  It was becoming harder to think, and a horrible anxiety set in.  I recall driving to my kids’ school to pick them up at the end of the day, and when I got home, I felt so horrible from fatigue and brain overstimulation (that’s the only way I know to describe it!), that I went straight to my bed at 4:00 p.m. and pulled the covers over my head to shut out the light and noise.  I couldn’t sleep, of course.  My brain refused to.  I would just lay there until my husband got home from work and could take care of the kids.  My body was vibrating.  I knew something was terribly wrong, but what could it be?

Over the next month, other symptoms appeared: 
muscle twitching 
head pressure 
headaches 
a throbbing sensation in my head during the daytime, especially when walking or with exertion 
a burning pain in my neck 
digestion problems
nausea 
the chills
tender glands
sore eye muscles 
heart palpitations
tinnitus
a constant low-pitched rumbling sound in my ear
air hunger (i.e., feeling like you can't get a satisfying breath) 
a low-grade fever
brain fog which felt as though I was drunk and unable to think clearly or focus on a conversation
an agonizing feeling in my body, as though all of my nerves were "irritated"
weight loss (13 lbs. in about a 2 month period)

I was so physically weak, unable to sleep, extremely fatigued, in pain, overly emotional, and I could hardly think.  I dreaded the days when I had to wash and dry my hair, as this became such an exhausting task.  I could hardly manage it.  Many days were spent laying on the couch all day, awake but with my eyes closed, unable to listen to the TV because the sound bothered me.  The days were so long.  I was so sick.

The doctors
I made many, many trips to my family doctor during this time, telling her that this felt like an “infection”.  In all honesty, she didn’t know what to think, but she did her job – she referred me on.  I saw several specialists – 2 neurologists, an endocrinologist, a sleep specialist, a psychiatrist, and a chiropractor – but no one came up with any concrete answers.  They examined me, checked out my scans (CT, MRI), and told me that they did not know what was causing my symptoms, OR that this *must* be stress-related; after all, I had been through so much with my husband’s illnesses the past few years.

I learned quickly that specialists have tunnel vision.  If you don’t fall within their narrow scope, you are dismissed and sent on your way.  I was absolutely shocked that no one took this on and really tried to figure this out!  Why wasn’t anyone admitting me to the hospital?  Isn’t that what you do when you can’t figure out why someone is sick?  (Where was House when I needed him?!)  Sadly, our medical system just doesn’t work that way.

The ER
My best advice here, is to never go to the ER unless it is absolutely necessary.  It is not a fun place to be.  I was so ill, though, that I was grasping at anything and anyone who might be able to help me.  I made 4 visits in total to the ER.  The last visit was by ambulance because I had fainted and my young son phoned 911.  When I was brought by ambulance, I had such hope that THIS would be the time when I might be admitted to the hospital to have some in-depth testing done.  I had the ambulance attendant grab a file on my desk with my medical records and prayed that someone in the ER would finally listen to me and piece this together.  But no.  They performed an EKG and said that their job was to simply evaluate my fainting spell.  They were not interested in investigating my many other symptoms.  Because my EKG was fine, and it appeared that I was being followed by other specialists in the community, they released me.  

The first 3 ER visits weren’t totally fruitless.  Although the ER doctors had no idea what was wrong with me, they were the ones who sped up my appointment with the first neurologist, who made the referral to the endocrinologist, and who arranged for an immediate CT scan.

One visit was particularly frustrating when the ER doctor pulled my husband aside *twice* to ask if I was doing illegal drugs!  Clearly he didn't believe my husband the first time.  And if he knew anything about my character, he would have known how ridiculous that question was.  Furthermore, had he known anything at all about late stage Lyme disease, he might have spared me some of the agony I went through in the ensuing months.

The A-Ha moment
Sometime in March 2011, it dawned on me!  Through all my brain fog and anxiety, I somehow remembered listening to the CBC radio on my way home from work the previous year, and hearing an interview with a U.S. doctor who had contracted Lyme disease and who was now treating patients for Lyme.  I remembered her talking about how Lyme is not properly diagnosed in Canada.  I wondered if THAT was what I might have.  I searched the internet for that interview with Dr. Maureen McShane, and listened to it.  I then did some internet research for Lyme symptoms, and things were beginning to make sense.  (Thank you, Dr. McShane, for going public and trying to inform Canadians.  Had I not heard your CBC interview, I would likely still be very ill today.  If you would like to hear Dr. McShane on the CBC, click here.)

Where might I have been bitten?  Over the past few years, I had been to several places where ticks are found:  a cottage in Muskoka, a cottage in Sauble Beach, and two visits to the Pinery Provincial Park where we had walked through grassy, wooded areas to get to the beach.  In actuality, it could even have been in my own backyard.  No, I don’t recall a bite or bulls-eye rash, but from my reading, 50% of people don’t.  Furthermore, the baby ticks (nymphs) are the size of a poppyseed, and are easily missed.  I’ve also been informed that this illness can be transmitted by flies and mosquitoes as well.  I certainly came into contact with a lot of black flies up north. 

Apparently, this infection can lie dormant in a person's body for weeks, months, or years until one's immune system becomes compromised, allowing the bacteria to multiply and cause symptoms.  I suspect this is what happened to me.  I had been through such a stressful time in November-December of 2010 with my husband seriously ill after his brain surgery.  It is no surprise to me that my symptoms began then.

As I dug deeper, a horror fell over me.  It became evident, from peoples’ stories, that there were numerous roadblocks to getting proper treatment in Canada.  If  I had Lyme disease, I might be ill forever or deteriorate further and possibly die.  Thoughts raced through my mind.  Could this really be true in Canada in 2011?  The doctors don’t really understand this?  They don’t know how to treat it effectively?  I was panicked.  How was I going to get help?  Where would I find a doctor?  I was definitely too weak to travel.

I really thought my life would soon be over.

Taking matters into my own hands
From my internet research, I determined that I needed to send my blood to a lab in California that specializes in tick-borne illnesses:  IGeneX.  My family doctor agreed to sign the requisition for IGeneX, but wanted to send my blood to the Ontario Public Health Lab first.  My dear sister-in-law drove me to the lab and then to FedEx to package everything up for its trip to California.  It was quite the process. 

The Lyme test results came back:  negative from the Ontario lab, positive from IGeneX.  (This is typical from the many stories I've read about.  The ELISA test performed by the Ontario lab is highly inaccurate.)

My family doctor didn’t know how to interpret the IGeneX test results, as they are complicated to read, so she referred me to a local infectious disease specialist.  In the meantime, I got myself on the waiting list with two Lyme-literate doctors in the U.S. 

Sadly, any mention of Lyme disease to the specialists I had seen was quickly dismissed.  I was cautiously hopeful that the local infectious disease specialist would diagnose me correctly, but he told me that he did not suspect that I had Lyme disease because of the low probability.  He said that our medical system works on probability, and that it was more probable that my symptoms were due to stress and anxiety.  (Low grade fevers? Tender glands?  Ear rumbling?  I. don’t. think. so.  I couldn’t believe what I was hearing.  Once again, my hopes were dashed.  No help here.)  He had a negative opinion of the “for-profit” U.S. labs, and would not consider the very detailed test results I had just received, clearly showing antibodies to the Borrelia burgdorferi bacteria (a.k.a. Lyme).  If I wished, he would offer me a 3 week course of the antibiotic doxycycline......if it would make me feel better.  I took the script.  But I didn’t fill it right away.

Our wonderful family and friends
I will be ever grateful to our family for taking care of us, 24/7, for about two months in March and April.  My husband had had a health setback, and I couldn’t do much of anything around the house, and we needed the help so badly.  Thank you, from the bottom of our hearts, for keeping us and our kids together during this very difficult time.  xoxo 

And to our friends and church family who brought meals, provided rides for our kids, and prayed for us, we are so thankful for you.

The LLMDs (Lyme-Literate Medical Doctors)
In June 2011, six months after the onset of my symptoms, I had two separate appointments with Lyme specialists – in two different U.S. states.  I really wanted two opinions to be sure of my diagnosis.  Both doctors spent about two hours each with me, taking my history, examining me, and looking at my IGeneX lab work.  Both doctors diagnosed me with Lyme disease, and possibly the co-infections of babesia and bartonella.  Both doctors recommended long-term oral antibiotics, probiotics, and various vitamins and supplements.  I had to make a choice between the two doctors, and chose the one who was located closer to me.  I continue to make the 3 hour trip to see him regularly.

A long road
The past year has felt like an eternity, but my LLMD has restored my health to a great degree and has given me my life back.  I started on a course of antibiotics in June 2011 and I continue to take them today, more than a year later.  The antibiotics have been switched up from time to time to outsmart those stealthy spirochete bacteria.  There have been a few bumps in the road with regard to side-effects, but generally, I have tolerated the meds quite well. 

My healing has followed the path that my doctor described to me, and that I have read about extensively.  It is a slow process to reduce the bacterial load in your body, as these spirochete bacteria are slow-growing and are only susceptible to the antibiotics when they are in their growth phase.  The progress seems slow at first, but many months down the road, you start to realize that you're feeling quite a bit better than you were, and you start to have some hope.  Periodically, I have flare-ups of my symptoms from bacterial die-off.  These are called herxheimer reactions.  These reactions should not be feared, but welcomed.  It means the meds are working.  They always say that with Lyme treatment, you will feel worse before feeling better, and that is certainly the case when you first start on antibiotics.

My 13 lb. weight loss didn't last, unfortunately!  I've regained 23 lbs., likely from a messed up metabolism caused by the Lyme and various medications I've been on. 

I’m happy to say that I’m back to work on a modified schedule, with the hope of returning to my regular teaching job in the fall.  I don’t know how much longer my treatment will be.  LLMDs usually treat until symptoms are gone, plus two months.  I’m not quite there yet, but I do see the light at the end of the tunnel.  Many of my symptoms have disappeared, and others have lessened substantially.  My progress is still "up and down", sort of a "two steps forward, one step back" pattern.  I still have fatigue, but I’m sleeping much better, and I've finally been able to stop taking sleep medication.  I am so thankful for that!

There continue to be challenges and hills to climb, but despite them, I’m enjoying life again.

For more details on the difficulty I had getting diagnosed, please see my post entitled Dear doctor.

Update - September 2012 - It has now been 16 months since I started antibiotic treatment, and I'm feeling really good!  Slowly, the symptoms just faded away.  My doctor told me that often, people's symptoms disappear in reverse order.  That seemed to be the case for me.  The head vibrations when falling asleep have finally gone away, and my sleep has been restored.  I have pretty good energy, and have been able to return to my regular work hours.  All in all, I feel about 90-95% on most days.  My doctor thinks I should be off antibiotics by the end of 2012.  Stay tuned...

Update - November 21, 2012 - My treatment is finished, after almost 18 months of antibiotics!  To read more, click here.

Update - January 2013 - After being off antibiotics for 7 weeks, I had a relapse.  Not huge....but enough to cause me concern and want to contact my LLMD immediately.  So, I'm back on antibiotics and about to start an herbal regimen as well.  This treatment should take me to the end of June 2013, then we'll see about ending treatment (again!).

Update - February 2014 - I resumed antibiotics in January 2013 and continued them for a year.  I was feeling really good, so I decided to try going off them again in January 2014.  Several weeks later, some symptoms crept back.  My doctor will soon decide if I should have another course of antibiotics to calm the symptoms.

Update - September 2014 - Wow, I'm feeling great!  I've reduced to a lower maintenance dose of one antibiotic.  I feel about 90-95% on most days.  Here's hoping that this remission is here to stay!

Update - August 2017 - It has been 3 years since my last update and have lots to share.  I unfortunately relapsed in January 2016 after trying life without antibiotics for 6 months.  I resumed antibiotics at that point but continued to be very ill.  I went to a U.S. clinic for 3 months, came home, resumed antibiotics, started the Buhner herbal protocol, developed new debilitating symptoms, started seeing a functional medicine specialist, and battled through our ignorant Canadian healthcare system once more to help me with my new symptoms (an exercise in futility).  I was denied LTD to boot. Praise God, I have slowly regained functionality, without antibiotics, despite having to deal with daily symptoms.  I am thrilled to be able to push through the symptoms and pain to care for my family, but it is still hard.  Unfortunately, I can no longer work.  I'm trying to keep a positive attitude, though.  I pray for all those affected by this horrible illness.