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B.C. long-hauler details struggles with symptoms, a year after COVID

Last Updated Apr 12, 2021 at 1:03 pm PDT

FILE -- Specimens to be tested for COVID-19 are seen at a lab, in Surrey, B.C., on Thursday, March 26, 2020. THE CANADIAN PRESS/Darryl Dyck
Summary

COVID-19 long-hauler says he's still struggling with confusion, memory loss, anxiety 13 months after getting sick

Clinics require positive PCR test, says B.C. long-hauler, who adds these tests weren't widely available early on

B.C. man says he wants long-haulers and their struggles to be recognized

VANCOUVER (NEWS 1130) – As COVID-19 cases and hospitalizations rise across the country, what we often don’t hear about are the symptoms and struggles so-called long-haulers continue to deal with.

A B.C. man, who believes he got sick in March 2020, says he wasn’t taken seriously when he first came forward with symptoms last year.

“I dealt with some issues with my doctors for quite a few months,” Jonah McGarva explained. “I was initially diagnosed with what was called lock-down anxiety, and that was about two weeks after I initially presented with symptoms.”

He says it was only after a few months of ongoing symptoms that one of his doctors sent him for an x ray.

“And it came out pretty clear that there was no signs of anything on the x-ray. I was prescribed a bunch of medications, inhalers, steroids, that sort of thing. Eventually, when tests became public in April here in B.C., I went for a test on I believe it was April 23 — 22, 23, somewhere in there. Because it was almost two months after initially presenting symptoms, it came back negative.”

McGarva tells NEWS 1130 he’s been considered a “presumptive” case of COVID-19 for well over a year. That’s despite him dealing with symptoms for months, and undergoing more tests.

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He says because he was never deemed a confirmed case of COVID-19, he isn’t able to access certain programs and services offered to those who have received a positive PCR test.

“My first onset of symptoms were a massive cough that was incredibly debilitating. I had gastrointestinal issues right away, it was like the worst flu I had ever had. Incredible exhaustion. Random pains in my chest that honestly felt like a heart attack,” McGarva described of his initial symptoms.

However, it was a little more than a week in that he started to feel worse.

McGarva recalls being bed ridden, but doesn’t remember much from that time.

“I consider it lost time. I don’t recall those two weeks very well, I just know I slept a lot and was very sick,” McGarva said, noting he considered going to the hospital.

“And I didn’t want to take an ICU bed away from somebody who needed it more than I did,” he added.

He would eventually begin to recover, despite persisting with his doctor that he knew his case was more than just something that was “presumptive.”

McGarva says he started to feel “about 80 per cent” better by June, and started exercising again.

But that didn’t last, and he says he “crashed really hard.”

“It hasn’t been better since. My average day functioning I’m at 60 per cent of what I used to be,” McGarva explained.

Brain fog, confusion, anxiety

Now, his symptoms are more cognitive.

“I suffer from massive confusion now, short-term memory loss. I’ll have conversations with my wife, she’ll tell me what we’re having for dinner and two minutes later I’ll ask her, ‘What are we having for dinner?’ I just don’t remember the conversation,” McGarva said.

He also describes auditory issues, trouble reading, migraines, anxiety, and more.

Dr. Sharry Kahlon, the medical director of Post COVID Recovery Clinic at Jim Pattison Outpatient Clinic in Fraser Health, says people who are diagnosed with long-haul or long-COVID symptoms are usually diagnosed after three months of initial symptom onset. They are described as people who have recovered from “the acute infection” and who have some residual effects from their initial COVID-19 infection three months later.

“The symptoms can be quite variable. They can range from what we call more systemic symptoms, so chronic fatigue, malaise, brain fog, to actually involving certain organ systems. So for example, ongoing cough and shortness of breath, muscle weakness, rashes, and often they can resemble their initial COVID infection as well,” she explained.

She says the more common symptoms she sees in her clinic include ongoing fatigue, brain fog, difficulty concentrating and remembering, as well as difficulty returning to work. Shortness of breath, ongoing cough, and chest discomfort are also common.

Kahlon notes there’s a lot of data shared between clinics — three of which are in the Fraser Health region — to help centralize data, but also to develop a standardized way to evaluate and manage these patients.

“So all patients who go through the clinic at each of the three sites, undergo a standardize set of investigations, are reviewed by the physicians with a standardized questionnaire reviewing their symptoms and their course, and are followed longitudinally in kind of standardized patterns,” she explained.

However, given McGarva never got that confirmed positive test, he says he doesn’t qualify for such clinics.

McGarva is one of the founders of the Long Covid Canada Facebook page, which aims to bring long-haulers from across the country together.

He says the months since he first got sick have been difficult, and he knows there are many others who are in the same position as him.

“It’s been a challenge for 13 months to try to find treatment and to try to get recognized, and I think the biggest challenges myself and other long-haulers face in this country is the demand by the COVID clinics that you must test positive on a PCR test. That leaves a whole, giant segment of the Canadian population without help right off the bat because so many of us got sick before PCR tests were even utilized outside of hospitals or outside of emergency care,” McGarva said.

He hopes the criteria for such clinics will change and that people, like him, will be acknowledged. In the meantime, he wants to provide support to other long-haulers.

“Long Covid Canada … was Canada’s first support group for long-haulers. It was established in June of last year. We’ve seen our numbers grow over the months,” McGarva said.

“It’s a very challenging topic and unfortunately seeing our support group grow, it’s saddening.”