Saturday, 23 December 2017

A Christmas miracle


Last Monday I called the doctor's office, heart pounding. "Are my husband's test results back?"
I heard the clicking of the keyboard, the breathing of the receptionist, and nothing else. 5 seconds, 10, 15 - it felt like an eternity.
Then: "Yes, they are."
Me: "And???"
The receptionist: "Did the doctor call you?"
Me: "No!" I wouldn't talk to you if he had, I added silently, exasperated.
The receptionist: "He would have called you if there was anything. It must have been negative."
The disappointment hit me hard and fast, like a punch in the stomach. I knew that there was a good possibility of that happening, but still - I made an appointment for Rich to see the doctor later in the week, and hung up.
Fuck, I muttered to myself.
Rich was still sleeping, and I was in no rush to tell him the bad news. Not knowing what else to do, I sat down in front of the computer to learn more about Lyme Disease.

What I found reads like the script to a movie:
In the early 1970s, a debilitating mystery illness was making the rounds in the small town of Lyme, Conneticut. Several people were plagued by unexplained headaches, skin rashes, swollen knees and excrutiating pain. Doctors couldn't find a cause. The patients kept suffering, while the medical community tried to figure out the reason behind these symptoms: was it something in the air or water? What had caused the rash?  While the symptoms varied widely between patients, they all had one thing in common: they had all been bitten by a tick.

It wasn't until 1981 that the scientist Willy Burgdorfer discovered the bacteria responsible for the disease. In honour of his discovery, the bacteria was named after him: Borrelia Burgdorferi.
Borrelia is sneaky. It doesn't circulate in the blood but interacts directly with the cell tissue it infects, making it difficult to detect. It also replicates slowly, meaning the number of bacteria found in the patient stays small. These characteristics are responsible for the difficulty of diagnosing Lyme Disease; those damn bacteria hide well.

To diagnose the disease, the doctor has to not only look at lab results, but also take into account the medical history, symptoms and exposure to ticks.

I felt better.


In the meantime, Rich had woken up, and I shared everything I learnt.
"I wish I could just talk to somebody," he said wistfully.
"Let's see what I can do," I replied.
I went to my trusty Canadian Lyme Disease Foundation, found a contact number, dialed and handed the phone to Rich.
After 2 rings, someone picked up. An actual person, not a computer! Turns out, we had managed to get Jim Wilson on the line, the founder of the Canadian Lyme Disease Foundation.
He took his time listening to us, and shared a bit about his and his daughter's experiences with the disease. Just talking to someone who knows what you're going through is such a gift!
He also told us something important: Rich may have gotten infected in Germany by the European strain. He was very sick when he was 8 years old and was hospitalized for 6 weeks at that time. The tentative diagnosis was rheumatic fever, but the truth is, they never figured out what was wrong with him. He slowly got better, but he still remembers the doctor's dire prediction: that he may be in a wheelchair by the time he was 40 years old.

"It sounds like you may have contracted Lyme Disease back then," Jim said. "If it's never treated, the bug will stay in your system all your life. You need to get tested for the European strain, not the North American one. I can give you the name of a specialist for Lyme Disease here in BC."
And he did. Dr. DeMonte is a naturopath and Lyme Disease specialist, who herself has Lyme Disease. After reading her own harrowing story, I knew we have to meet this woman.
We made an appointment for January, and felt hopeful again.


But that's not all. On Thursday, I ran into our doctor at work. He works at my hospital, and I usually see him at least once a week. Every time we see each other, he asks about Rich.
"We were bummed that the blood test was negative," I said.
"It wasn't," he replied. "The screening was positive, just the follow-up test was negative."
Say whaat?!?

I'm still confused on the specifics about Lyme testing, but what I do know is that it is a Two-Tier Testing process. The first is a screening test that detects if someone has the disease. The second test is to confirm the diagnosis.
Since his test results are ambivalent, we will get yet another one done that will be sent to Germany to test for the European strain.
But due to his symptoms, medical history and positive screening, he has been officially diagnosed with Lyme Disease, and we started his antibiotic treatment two days ago. Is it a coincidence that this happened on the winter solstice? One of the comments I received upon sharing the happy news on Instagram was this: "It's interesting ... Yesterday was the solstice which is the turning point from encroaching darkness to the return of the light. This sounds like your and Rich's personal solstice."
I LOVE that.

Finally knowing what's been going on since August is incredible. We are positively giddy with relief. It may seem strange to be relieved about a serious illness, but the not knowing was horrible.
If it weren't for this blog and Michelle's helpful comment, we still would have no idea what's causing Rich this debilitating pain.

We are feeling very grateful. This has been our personal Christmas miracle.

I wish you all a very Merry Christmas!

Love, light and peace to you all,

Miriam xoxo



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8 comments

  1. So glad that you may have the answers and your “miracle”. Merry Christmas to you both and wish you joy, health and happiness in 2018 and beyond.

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    1. Thank you Darlene! Merry Christmas to you and your family as well, and all the best, love and light for 2018. 🎄🎅
      I know it sounds strange to call a potentially chronic disease a miracle, but the not knowing for so long was brutal. Being able to put a name to Rich's illness (and knowing that there is treatment available) is a huge relief. Have a great Christmas!

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  2. Oh my goodness! I'm so thankful that you both have some answers now! I'm so glad you were able to talk with the specialist on the phone and it's crazy that this could be from his childhood. Here's hoping Rich starts feeling better soon and you guys can learn how to best deal with this from here on out!

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    1. I think we're on the right path. It doesn't look like it's gonna be a quick fix, but just knowing what it is and that there are ways to treat it has been the most wonderful news!

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  3. So so so glad that you guys have answers and are starting the medicine! What a relief. Here’s to a quick recovery.

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    1. He has tiny little improvements every day. It will be a long road, but the road is towards healing!
      Happy new year to you and your lovely family!

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  4. So so so happy that you guys have something to work from now! What a blessing to just begin to know something! Lots of love and peace to you (and Rich) as the new year begins. You are one freaking amazing woman + wife! xx

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    1. So are you!! I know that you are no stranger to being with someone who is ill.
      But, as you know, caring for the ones we love the most comes naturally. It's hard, sometimes, but it's something we do without even thinking about. And seeing them recover is the most best reward ever! We are very lucky.

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