No one wants to be that parent. The one ringing alarm bells and freaking out. But when I saw the bulls-eye rash associated with Lyme disease, I was definitely concerned.
It was late last Monday afternoon and we’d spent the weekend camping at Tyhee Lake Provincial Park. I was loading our two-year-old into her car seat when, amongst her myriad bug bites, I noticed the telltale ring around a red bite on her arm. I quickly snapped a photo.
That evening, I began researching online. Truthfully, I was looking for something that would convince me I was overreacting: something telling me children can react this way to mosquito bites or that this known sign of Lyme disease is similar to some common fungal infection. Instead, I found only photos that looked disturbingly like the one I’d taken that afternoon.
According to Wikipedia, when it comes to erythema chronicum migrans, the medical name for Lyme’s bulls-eye rash, “a physician-identified rash warrants an instant diagnosis of Lyme disease and immediate treatment without further testing.”
In other words, when you see it, don’t mess around.
There are many — everyone seems to know someone — who struggle with the symptoms of chronic Lyme disease. Sarah, a friend from my Canmore days, is someone who knows all too well what it means to live with Lyme. She’s seen her life altered immensely over the past decade, from being passionate about exploring the outdoors to having days where she can barely stand. Last summer, she was forced to live in her vehicle — it was the only place her environmental sensitivities could tolerate. In a blog post, she writes:
“It’s difficult not to be angry that much of this possibly was preventable. If I was just taken seriously when I was taken to emerg in an ambulance several years ago, triggered into what looked like a stroke by traces of paint fumes, if the emerg doc had found me an environmental medicine doc and I had started treatment then, instead of telling me that he cannot prove that I have Lyme disease so can’t do anything for me, it could have prevented the progression to this.”
Sarah’s continued positivity in the face of Lyme’s challenges is tremendously inspiring. You can read more about her story here, and support her journey to wellness here.
Though extreme, Sarah’s situation isn’t all that unique. Many people are struggling with Lyme disease and its varied symptoms (everything from muscle and joint pain to headaches, dizziness, heart palpitations, nerve pain, memory loss and paralysis) because the illness often goes unrecognized by healthcare professionals. Green Party MP Elizabeth May, who successfully passed Bill C-442 two years ago requiring health ministers to create a strategy for dealing with the growing Lyme epidemic, puts it succinctly in this blog post:
“What I found baffling was the resistance, from some in the provincial health departments and some family doctors, to taking Lyme disease seriously. Unlike my decades of experience fighting toxic pesticides and herbicides like Agent Orange, there was no profit motive to explain the rigidity of this resistance. … This Lyme situation made no sense. Lyme disease was clearly spreading in Canada. The science regarding the climate crisis lined up with the experience of Lyme disease.”
So, that evening last week, as I failed to allay my fears through Google, I called the nurses’ hotline to get advice on whether my daughter needed to see a doctor that night or if it could wait until the following day. I could hear the nurse on the other end reading the very words I’d just been Googling, clearly at a loss for how to respond. Eventually she put me on hold, presumably talked to someone with more knowledge, and came back to suggest I see the doctor within 12 hours.
In the morning, I got an appointment with a doctor at our clinic (our family physician wasn’t available). A parent herself, she agreed the rash was concerning and prescribed antibiotics: doxycycline for seven days. I asked about blood tests, but she discouraged me, saying that the results could easily take more than a week. I later regretted not pushing for the tests, not for my own knowledge, but for that of the local medical community.
Officially, there is no Lyme in Smithers. A map of BC shows very little in the north and nothing within our immediate area — it indicates “potential” in areas like Terrace, two hours to the west. According to our family doctor, there has never been a reported case of Lyme in northwest BC.
But as changing climates bring epidemics like mountain pine beetle, which has decimated BC’s forests over the past decade, I wasn’t convinced it couldn’t facilitate Lyme. Anecdotal evidence would indicate the very real possibility of contracting Lyme in the north: I’ve heard about people who were infected here but weren’t taken seriously, only to later develop symptoms, as well as vets removing ticks that tested positive.
It was only by chance that two days after our doctor’s visit I had an appointment with our local naturopath and happened to tell her the story. Concerned about the doxycycline, which is not commonly recommended for children, she picked up the phone to confirm with the pharmacist. Not only did the pharmacist agree about the doxy (he suggested it would be fine in small doses) but noted the weeklong course was too short: usually, he told her, it should be given for at least 10 to 14 days.
I called the doctor that afternoon and she called in an extension on our prescription. But that didn’t change my concerns about giving it to my child: and now a short course was turning into a longer one. As I always do when I’m out of options, I called my healthcare-professional parents for some guidance. This is the email I got early the next morning, after sharing the photo with them:
That looks classic.
Jim spoke to the infectious disease specialist this a.m. He took one look
and confirmed the diagnosis. He says no need for blood work. It would be
negative at this point.
Since it's being treated early she should be fine.
At her age she should be on amoxicillin 50 mg per kg of weight per day,
divided into 3 doses and given every 8 hours, for 14 days
You're such a good Mommy. Xoxoxoxoxoxo.
(And, yes, I totally left that last line in as gratuitous affirmation. I need to read it every chance I get.)
No one wants to be that patient. But I called the doctor a second time requesting a change to the prescription. I tried so hard not to apologize. But the, “I’m really sorry but…” slipped out anyway.
The clinic was unable to get us in that day, so we were off to emergency, where the doctor on call gave me a new prescription and ordered a blood test. She thought (and our family physician agreed) that the blood work should still be able to detect the antibodies that would indicate Lyme. We won’t know results for another week and a half, but at the moment I’m inclined to accept the infectious disease specialist’s diagnosis.
One of the most common problems with early Lyme detection is being prescribed too short a course of antibiotics. I’ve read recommendations for everything from two to four weeks, sometimes beyond. Right now we’re four days into a two-week course. If our test result comes back positive, I’ll request a third week. This isn’t a disease I’m prepared to mess around with.
In many ways, we’re lucky: lucky, first of all, that there was a rash. (One website described it as “winning the lottery” to present with one at all — up to half of people infected do not.) Next, we’re lucky that I saw the rash and, thanks to raised awareness about the disease, recognized it as a possible sign of Lyme. And, thankfully, we were taken seriously by the doctors we saw.
With proper treatment, it seems likely our daughter won’t needlessly suffer the effects of chronic Lyme disease. A decade ago, our story might have been very different.
Update, June 7, 2017: We learned today that blood tests came back negative. This doesn't change the outcome of our story: blood tests for Lyme are notoriously unreliable and the disease is commonly diagnosed through the bulls-eye rash and other symptoms. This is why it's so important to know the signs to look for and seek the correct treatment right away.