Lyme Disease – Our Fight to Pay It Forward

My family’s fight against Lyme disease is relatively new, but we learned quickly of the controversy surrounding Lyme Disease. Three months ago, my wife (Theresa) was bit by a tick in our backyard in Calgary, Alberta (Canada). At the time, we didn’t realize what we were dealing with. After a rapid decline in health, my wife was diagnosed with Lyme Disease by a University Research Lab in the United States.

That’s right, we live in Canada, but my wife’s diagnosis came from the United States.

Further, we only received that diagnosis because we independently sent her blood upon recommendation from a Canadian doctor. This is when the controversy became extremely apparent. Let me back up a bit…

On May 27th, Theresa was admitted to Hospital through Neurology to expedite testing for what seemed to be a Pituitary Tumor or perhaps something even worse. She had all the symptoms: persistent headache, dizziness, blurred vision, unexplainable collapses, and she was leaking breast milk, but not breastfeeding a baby or pregnant any time recently.  MRI showed nothing. No tumor of any kind. Next, they checked her brain fluid (CSF) through a lumbar puncture. Pressure was good and no viruses detected. During the testing period, the doctors began to build a case for what they called a New Daily Persistent Headache. Over the course of a week, she began experiencing extreme pain in her joints, and on Saturday June 6th she called and told me she could no longer feel her arms and legs, and her face was going numb. The doctors put her in a seizure monitoring room with observation goggles over her eyes. They watched her have a stroke and immediately gave her another MRI – results were clean – still a New Daily Persistent Headache.

At this point, we were wrestling with the fact that our family may never be the same. Theresa was coming to grips with mortality while she lay in bed thinking she could die. 

Despite everything that was happening to her, Theresa had an unrelenting positive attitude. I had learned more about my wife in two weeks than I had in the previous ten years. I was not ready to lose her.  I took to the internet and read about rare diseases for nearly two days straight. I chased down every idea and lead that someone would throw my way.

Then I started reading about Lyme disease.

There was a case that matched Theresa’s symptoms right down to the breast milk – it was a stretch, but then something else happened. Both my sister-in-laws emailed me a contact for someone with Lyme Disease within an 8 hour period. Whether it was coincidence or divine intervention – I couldn’t ignore it. I talked to Theresa about it and she recalled a bite she got while raking in April (I got sick to my stomach).

The next morning I went to the hospital and talked to every doctor who would listen to me about Lyme Disease, and I began to see a pattern. The student told me she was taught that Lyme Disease did not exist in Alberta. The resident said he would consider it, but his body language dismissed me. I went to the head Neurologist in the ward and explained to him that I thought it could be Lyme, and I’d like it to be considered – he didn’t say no. Progress! In fact, he called in specialist that practiced in the hospital. More divine intervention???

Two hours into the doctor’s rotation a resident neurologist was sitting at Theresa’s bedside walking her through her testing. I could see what was happening – he was building his case for a New Daily Persistent Headache diagnosis. Explaining how repeatedly increasing her pain medication was helping her get better.

Theresa was desperate, and she was reluctantly accepting.

I was not.

He was not explaining how a headache could cause all her symptoms; simply that he had applied enough narcotics for her to cope with the pain. I was getting infuriated. 

It was at this point, that our lives changed.

“The Specialist” walked into the room with dramatic flair, brushing back the curtain barriers and sitting down at the foot of the bed. Theresa told her story and explained her symptoms, he immediately started her on a thirty day antibiotic treatment – just in case it was Lyme, as he suspected. Three days later, we sent Theresa’s blood work to New York.  Neurology ordered the provincial test, and requested a consultation from infectious diseases. They still did not believe it was Lyme.

We sent Theresa’s blood work on a Monday and her result came back Thursday. Two of three tests were positive for Lyme according to the United States Centre of Disease Control. Finally, we had something we could treat!

This was a bittersweet moment for Theresa. She had heard enough to know that Lyme Disease would be no picnic, but at least it could be treated.

WAIT – this is where it gets interesting!!!

What do you mean you don’t believe us “Mr Infectious Disease Dr”? You want to test her for Strep Throat and HIV??? I have a positive test result for Lyme Disease in my hand? How much taxpayer money do you want to waste?

The good news, was that it didn’t matter what the results were of any further testing. “The Specialist” had convinced Neurology to transfer care to him, and we were assured she would be treated. The provincial test still had not returned. Theresa was immediately started on IV Antibiotics. The next day her joint pain began to subside. The day after that, she walked to the bathroom on her own for the first time in a week. Two weeks later she walked out of the hospital on her own two feet. Over the two weeks on IV Antibiotics, she had been transitioned off most narcotics prescribed for her New Daily Persistent Headache and was on a Lyme Disease regime.

She sets small daily goals now, and is on a long journey back to her former self.

So what ever happened with the provincial test?

Well it came back negative for Lyme Disease. The Canadian Standard test is a single test. They only run one test, and will not run the other tests unless the first comes back positive.  It also happens to be the most difficult test to attain a positive result on.  It was the same test Theresa was negative for in the US.

According to Canada, Theresa does not have Lyme Disease.

There is no surprise why there has never been a confirmed case of Lyme Disease contracted in Alberta. Our test system is backwards.

As Theresa continues to recover, I am trying to pay it forward. I realize how fortunate we are: to have self-diagnosed, to have received the consultation from “The Specialist”, and to have been able to afford the US Blood Test. Our Canadian Guidelines are a liability when it comes to Lyme Disease diagnosis. If not for relentless persistence, Theresa could be curled up on a bed in a drug induced coma hoping that someday her New Daily Persistent Headache would magically disappear.

My persistence is now focused on lobbying our government to understand the flaws in our system and support those in favor of making changes. I’ve started by introducing Alberta’s new Health Minister, the Honorable Sarah Hoffman, to “The Specialist”.  Ms Hoffman needs to understand how improvements can be made to our failing system. The Health Minister’s Office has acknowledged my letter, and it has been “actioned for response”.  I’m still optimistic that the response will be a call to “The Specialist” for a consultation, as requested.  With (or without) Ms Hoffman’s support, I will persist, and raise further awareness on this topic. Help spread the word. Share this post. Email the link to health.minister@gov.ab.ca.

Lyme Disease is not uncommon in Canada.  The only thing uncommon about Lyme disease in Canada is a positive diagnosis.

(This post originally ran on Pushing Past Excuses.)

About the author: An independent consultant specialized in creating and managing complex enterprise level implementation strategies, a proud family man, and a new blogger.  I’m here to raise awareness on Lyme Disease as it relates to our families newest and biggest challenge.  Follow us @pushpastexcuses or on Facebook (click here) as we share our journey of Lyme Disease recovery and my personal mission to raise awareness at the Government Level.