Five hours a day for five days straight, Kelly Jensen sits in a room with an IV drip in her arm. She’ll suffer this routine each month for three months – just to see what happens.
For the 38-year-old Squamish resident, the inconvenience of receiving intravenous immunoglobulin therapy is a gamble; it may help, it may not. But after five years battling Lyme disease with various combinations of antibiotics and other prescriptions, naturopathic supplements, and a range of treatments from vitamins to ozone to infrared, the prospect of relief is worth any experiment.
“I’m fortunate, when I’m having treatments, mom will drive out to take care of the kids and help around the house. And my husband has been super-supportive; his job is exible and allows him to be on call when I’m having a bad day and mom isn’t available.”
In 2013, while pregnant, Jensen began to experience depressions and mental fugues that progressed after the birth of her son. Standard treatment for this didn’t help and other symptoms arrived: muscle twitches and spasms, tingling and numbness, exhaustion. Finally, at the urging of a friend, she underwent two different tests for Lyme disease, with the collective result being equivocal. Thus began her Kafkaesque journey, chasing symptoms through a labyrinthine world of doubting doctors, empathetic naturopaths, and a litany of hopeful treatments. Five years later, despite having moved from a 9.9 out of 10 on the symptoms list to a more manageable 4–7, she still experiences spasms, low energy, and the depression that accompanies loss of identity (she’d just finished her Masters and had to leave her job as a teacher when symptoms began; she hasn’t worked in four years).
Like many Lyme patients, Jensen can enumerate in detail the onset of every symptom as well as each contact with medical professionals, administration of a test, new drug or other treatment. Every up, and every down. It is a bit-map of frustration. Unfortunately, there are thousands like her in this country.
Manifestations of Lyme are so baffling and misunderstood by the medical establishment that patients can quickly become agitated, depressed, or both. Often, this results in their being evaluated for psychiatric issues instead, a demeaning outcome. It’s one reason Green Party leader Elizabeth May introduced private member’s Bill C-442 to develop a national Lyme strategy. Passed unanimously in December 2014, there’s now a federal framework to tackle Lyme.
However, uptake has been slow and there are vanishingly few “Lyme- literate” doctors (patients use this term with a saviouresque tone). The received indicator of Lyme – a bullseye rash – occurs in less than 30 per cent of those bitten, and there is otherwise no good test for Lyme exposure. Even the vaunted US Centers for Disease Control and Prevention (CDC) acknowledges that the standard test fails at least 50 per cent of the time in the crucial early stages of the disease; it isn’t until Lyme’s later disseminated (and often debilitating) stages that tests can deliver a reliable positive. Thus, with no diagnostic surety, orthodoxy-bound doctors are wont to push back. After battling Lyme himself, Jim Wilson founded the coalition and resource group CanLyme. “The enemy here is ignorance, it’s arrogance,” he told a CTV W5 reporter.
The bacterium responsible for Lyme, Borrelia burgdor , has lived in the environment for millions of years, but jumped into the human population during the 1970s, where it was discovered in the eponymous Connecticut town of Lyme. The CDC now lists Lyme as the biggest vector-borne disease in the US, with approximately 35,000 diagnoses per year and an estimated 300,000 currently afflicted. Canada’s 500–900 annual registered cases are widely acknowledged as a gross underreporting.
Ticks are born free of Borrelia; they acquire it from a reservoir host. Thus, all three blood-sucking life-stages – larvae, nymphs and adults – can carry the pathogen. As science writer Carl Zimmer points out in “The Rise of the Tick,” a 2013 article in Outside, “Ticks are champions at spreading diseases, expanding in both poor countries and rich ones, and delivering an extraordinary menagerie of bacteria, protozoans, and viruses.”
Adult blacklegged ticks were being reported in densities of up to a thousand per deer
A big issue is that many people don’t know they’ve been bitten, because they never see the tick. Tick saliva contains an anesthetic that numbs the area, after which an anti-coagulant is secreted to facilitate blood flow, and finally, a “cement” that keeps the tick’s mouth in place, which is why they’re so hard to pull out.
Lyme sufferers are everywhere. In recent years a number of celebrities have gone on record about battles with Lyme: Avril Lavigne, Daryl Hall, Kathleen Hanna, Shania Twain. Kirsten Sweetland, Whistler’s lone Summer Olympian in Brazil in 2016, battled through undiagnosed late-stage Lyme for two years before participating in the Olympic triathlon – a Herculean feat given the demands of training and energy-draining effects of the disease.
Lyme disease may be the first epidemic of climate change. As rising global temperatures lead to shorter winters and longer summers in the Northern Hemisphere, blacklegged ticks (genus Ixodes) that carry Borrelia bacteria have crept northward, and it’s estimated that 80 per cent of Canadians will soon be living in areas that have blacklegged ticks. (I. pacificus, the local version, is found in Squamish and Whistler, and Pemberton is lousy with them.) Ticks are climbing both latitudes and mountains, and not only in North America; it’s also happening in Scandinavia, Eastern Europe and Russia.
It isn’t just ticks moving north, but also other, more commonly infected carriers of Lyme – like white-footed mice. Larval ticks bite mice, then drop off and become nymphs, about the size of a poppy seed (or the head of a pin). This stage climbs a blade of grass or brush and waits for something exhaling CO2 to come along – which it can detect from 15 metres away. Sometimes it’s a human, but more often than not the next victim is a deer.
Although nine of 10 ticks that bite reservoir mice will become infected with Lyme, only one in 10 that bite disease-carrying deer become infected. Deer, however, carry far more ticks than mice – hundreds at a time – making their overabundance as significant a concern as that of mice.
In a revealing 2014 essay “What the Deer Are Telling Us,” writer Christopher Ketcham details how removing top predators from the environment leads to unsustainable deer populations, and details how data describes a litany of impacts from hyper-abundant deer in various parts of North America. Most insidious of these is the role of deer as primary host for adult blacklegged ticks. In the 1980s and ’90s, as the incidence of Lyme rose across New England, tongues wagged about an association with spiking deer populations. Adult blacklegged ticks were being reported in densities of up to a thousand per deer, so more deer doubtless meant more adult ticks in an area. But other studies suggested that increase in the disease was tied more to ecological conditions coincidentally favourable to more important links in the Lyme chain – like shrews, chipmunks and mice.
As preferred hosts of the tick’s larval and nymph stages, this tiny triumvirate comprise a collective reservoir for transmitting Lyme. Proliferation of mice is promoted both by the same fragmentation of woodlands that facilitate deer overabundance, and by the near- extermination of the rodent’s primary predator, red fox. Coyotes replace foxes in these landscapes because their main predator
(and, coincidentally, that of deer) the grey wolf, was run out of town a century ago. While this narrative briefly shifted focus away from deer, a 2015 study returned to the association between deer density, tick abundance, and Lyme disease. Evaluating a Connecticut community over the span of 1995–2008, the number of resident-reported cases of Lyme per hundred households was strongly correlated with deer density. When targeted hunts reduced deer density in the community by 87 per cent, there was a 76 per cent reduction in tick abundance, a 70 per cent reduction in bite risk (because of lower vector density), and a whopping 80 per cent reduction in resident-reported Lyme.
The conclusion was that pushing back coyotes and restoring foxes might help suppress small rodents that young ticks live on, but irruptive deer that harbour adults should be significantly lowered to reduce the environmental load of infected ticks and with it, the risk of contracting Lyme. No surprise that many communities in New England, Ontario, BC and elsewhere are now hammering hard at urban deer populations.
Whistler real estate agent Sarah Morphy has battled Lyme for three years but considers herself lucky.
“My best friend back home is a naturopath who specializes in Lyme, so I was aware. When I got this funky, painful ‘bruise’ on my leg with what looked like a bite, I sent her a picture. It wasn’t a typical bullseye, so she said to monitor myself for symptoms.”
That was July 2015, and Morphy didn’t have to wait long. In August she experienced a range of odd, seemingly disparate issues that she first connected – like many patients – to everyday life: a stiff neck (Must have slept wrong…); a swollen knee (Must have twisted it…); vertigo (Must have been because I was bent over picking something up…). Eventually it became clear these were connected, and knowing how pointless it was to get tested in Canada, Morphy sent a blood sample to a specialty lab in Germany. It returned positive.
“I personally know about 40 people here dealing with chronic Lyme, and at least two who acquired it here. I figure if I’m not in the classroom educating, then I should be educating the community about Lyme. I have a new sense of purpose. No one should have to go through this.”
“So, the summer I turned 40, Lyme disease was my present,” jokes Morphy. “I got it in either Whistler, Pemberton or Anderson Lake.” Her friend directed her to another naturopath in the Lower Mainland, as well as a Lyme-friendly doctor in Maple Ridge. Between the two, a treatment consensus emerged; Morphy went on antibiotics for six months, plus other drugs, tinctures, supplements and a radical change in diet. “As soon as you start treatment you’re agitating these organisms,” she notes. “And your body feels like shit because you’re fighting them – kind of like a fever when you have a virus – and then, as they die off, you start to feel better.”
Feeling better is the Holy Grail. Freedom from symptoms is less important than freedom from the ignorance of not knowing; taking Lyme into your own hands tends to create its own positive benefits that can help mood and treatment.
Whistlerite Therese Lundgren was bitten by a tick in 2002 and suffered a decade of revolving symptoms before being diagnosed. At first she had a small, circular bullseye that lasted three months. When she finally went to see a doctor, she was only given some rash cream. After six months she started developing food allergies, experienced extreme exhaustion, anxiety attacks and nights sweats, and Parkinson’s-like shakes. She joked about her sudden memory loss.
By 2012, Therese found herself on the verge of a physical and nervous breakdown at her parents’ house in Sweden, where she spent summers. “My aunt had Lyme disease for seven years and lost her sense of balance, so I asked a doctor there to test me for it and it came back positive – full-on late stage Lyme. I was stoked but couldn’t believe that after being sick for ten years, treatment was going to be two weeks of double-dose antibiotics.”
Of course, that didn’t turn out to be the case. Late stage Lyme requires longer courses of antibiotics and co-treatments of the kind Jensen and Morphy itemized. “I didn’t want to go on IV antibiotics for two years, so I found this woman in New York who makes tinctures and started on these and other natural remedies for 120 days, deleting different foods and also doing yoga and meditation.”
During this time, like Morphy, things got bad for Lundgren. “I couldn’t walk. It was like being possessed by something taking over your whole system. A kind of exorcism. Then the joint pains and brain fog lifted and my memory came back. It took six months, but I started to feel OK. I still have a few issues, but by and large, I have my life back.”
These days Lundgren says she’s feeling better and has the energy needed to run her business, a second-hand fashion shop in Function Junction. It’s the kind of turnaround patients like Kelly Jensen hope for, the kind that maybe immunoglobulin treatment will bring.
“I moved to where I finally wanted to be but haven’t been able to do anything I wanted to do,” notes Jensen of the unfortunate irony of living in Squamish with Lyme. “I personally know about 40 people here dealing with chronic Lyme, and at least two who acquired it here. I figure if I’m not in the classroom educating, then I should be educating the community about Lyme. I have a new sense of purpose. No one should have to go through this.” –ML
The best defense against Lyme is more education. Information on prevention and other Lyme resources can be found at canlyme.com.
Leslie Anthony is a Whistler-based writer and author. His latest book is The Aliens Among Us—How Invasive Species are Transforming the Planet—and Ourselves.