Madison Area Lyme Support Group

The woman, a mother to three boys, initially assumed a lump in her breast was due to Lyme disease. “Before I was diagnosed with breast cancer, I thought a lump I had found was part of my Lyme disease. I thought, ‘Okay, let me just watch this and see if it goes away over the next month’,” she tells Glamour reporter Jillian Kramer.

She explains that having cancer had never occurred to her and as a Lyme disease patient she had become accustomed to being judged and was worried about how medical professionals would view her complaints.

“I’d gone through a long bout with Lyme disease and had a lot of experience being blown off by doctors,” she says. “I had even gotten into the habit of blowing things off. I’d say, It’s probably nothing.

“I’d put it [breast lump] off for such a long time, thinking that people would think I was being silly.”

After her diagnosis of Stage IIIC breast cancer, the woman underwent chemotherapy, radiation, and a double mastectomy. Unfortunately, she relapsed a month after completing treatment and was diagnosed with Stage IV cancer.

She cautions others. “Even if you’re worried about being wrong, see a doctor.”

Editor’s Note: This courageous woman passed away in December of 2019 but her story is an important reminder to readers, particularly Lyme disease patients, to always follow-up with your doctor when a new symptom emerges. Do not assume a new symptom is Lyme-related, even when you’ve had a history of Lyme disease.

Researchers surveyed 137 participants from 11 professional and recreational organizations across New Brunswick between December 2018 and February 2019. Thirty-six percent of the participants spent time outdoors for their occupation and 64% for recreational activities.

Only one of the participants had been previously diagnosed with Lyme disease in Canada, while 14 were unsure about whether they had ever been infected.

“Of these participants, two reported that their symptoms began six or more years prior to the completion of the survey and one participant indicated that they were still suffering at the time of the study,” the authors write.¹

Survey participants were asked how frequently they perform protective behaviors. For example, “How often do you wear long pants to avoid ticks infected with Lyme disease?”

Hiking (66%) was the most common activity reported by participants in the recreational group while golfing (12%) was the least. Other activities included sport fishing, home gardening, sport hunting, dog ownership, and recreational paddling.

The most commonly reported activities by participants who worked outdoors included individuals who owned a small wood lot, farmers, tree planters, forestry professionals, and a dog trainer. Owning a wood lot (63%) was the most common activity, while dog training (2.1%) was the least common activity.

Comfort inspires safety behaviors

The only two safety behaviors that occurred more than “sometimes” involved wearing long pants and protective footwear. However, these behaviors were related more to comfort than to tick bite prevention.

The authors noted that “the protective behaviors are only frequently adopted if they protect the individual from immediate discomfort, such as long pants protecting one’s legs from scratches and protective footwear preventing foot and ankle injuries.”

Individuals were less likely to adopt the following behaviors: tucking pants in socks, spraying insecticide on the environment, avoidance of sitting on grass, and avoidance of walking in long grass.

Survey results

“Overall, the entire sample reported a low level of knowledge about Lyme disease,” writes Pierre and colleagues in their article entitled “Knowledge and Knowledge Needs about Lyme Disease among Occupational and Recreational Users of the Outdoors.”¹

“Our findings call attention to a desire for further information about all aspects of tick exposure and Lyme disease among individuals that spend time outdoors in New Brunswick,” the authors write.

Furthermore, “behaviors linked to avoiding tick bites are being carried out relatively infrequently.”

Questions raised by survey participants

There were a number of questions and concerns raised by the participants that demonstrate their desire to know more about Lyme disease in Canada and the prevalence of infected ticks in their region.  Comments included:

“Knowing which areas are active with Lyme-infected ticks would be very helpful. I feel like all the precautions are not worth the trouble if my area is not a hot-spot. I don’t know if some areas are more high risk than others or if the risk is the same across the province, or region.”

“Clear protocol explanations for how to remove ticks and if they should be brought with you to the doctor – how to proceed.”

What are the “side effects, side effects from delayed/neglected treatment?”

“Is there a time limit where the effects of Lyme are permanently irreversible?”

“Is it life-threatening?”

“How soon should an individual seek medical attention if feeling symptoms of [Lyme disease] LD?

“Why is it so much easier to get a diagnosis for animals than it is for humans?”

“Pets get lots of ticks. I’ve heard different information about whether cats/dogs can get Lyme disease, how it affects them (how you can tell they have it), whether they can transfer it to you, etc.”

“How are physicians trained to deal with this serious disease?”

“Have any advancements been made in diagnosis and treatment?”

“Do you still have to have testing and treatment done in the USA for best results?”

Editor’s note: The questions raised by those living in Canada are the same questions I am asked regularly in my practice.

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**Comment**

An independent Canadian tick researcher has proven that tick and Lyme proliferation has nothing to do with the weather:  https://madisonarealymesupportgroup.com/2018/11/07/ticks-on-the-move-due-to-migrating-birds-and-photoperiod-not-climate-change/

He’s even called out other researchers on shoddy, biased research on the topic:  https://madisonarealymesupportgroup.com/2019/06/17/ontario-public-health-officials-called-out-on-shoddy-biased-research-utilizing-an-erroneous-climate-change-model-to-program-a-futuristic-tick-problem/

The reason this is important is researchers clamor for dollars.  We need research dollars going toward transmission studies, testing and diagnostics, as well as effective treatments.  The last thing we need is more climate data.