TORONTO — When Megan Desjardins attempts to garden these days, she has to take multiple breaks to catch her breath. A recent walk on the beach with her family left her exhausted and in need of a long nap.
In early June, her chest was sore, her nose was numb, her arms were weak, and she had to lean on a chair just to hold the telephone up to her ear.
“You wake up every day thinking ‘OK, what pain is it going to be today? What am I going to experience today?’” she shared with CTVNews.ca during a call from her home in Comox, B.C.
Desjardins believes she contracted COVID-19 during a trip to Costa Rica and Panama in January and February. She said she experienced the first signs of illness — chest pain, raw itchy eyes, and a headache – on March 17.
That was 85 days before she spoke to CTVNews.ca for this story.
“I’m a healthy person normally,” she said. “I’m not overweight, I don’t smoke, I don’t drink, I don’t have recurring serious chest or health issues… this isn’t just a little cold that lasts for a couple weeks. It’s been three months.”
Desjardins, and thousands of other self-described “long-haulers,” believe the chronic symptoms they have experienced for weeks and even months are the result of COVID-19 infection, even though many of them have never tested positive for the disease.
That’s because most of them were unable to get tested when they first started showing symptoms due to the availability of tests in their area, or they received a negative test result when they were finally able to get one weeks later.
This doesn’t mean, however, they never had the disease and doctors and researchers say there are a number of possible explanations as to why they’re experiencing these symptoms and why they tested negative for COVID-19.
Ken Borg, who never bothered to get tested when they were finally made available in his area, said he lived a health lifestyle before he fell ill from what he believes to be COVID-19. He played hockey twice a week and went snowshoeing three times a week.
Now, Borg is easily tired out by a round of golf with his friends.
“It’s been a long recovery,” he said during a telephone interview from his home in Ottawa in early June. “I’ve never had as many naps as I’ve had over the last three months.”
He believes he was infected with coronavirus at a house party in early March, which included several attendees who had recently returned from abroad.
On March 11, the 58-year-old retiree experienced his first symptom — a congested throat.
Since then, Borg has experienced waves of fatigue, chest pain, heart palpitations, high-blood pressure, as well as red, painful lesions on his toes, or “COVID toes” as the condition has been sometimes called.
And while the heart palpitations appeared to have stopped last week, Borg said he still experiences fatigue and his breathing isn’t completely back to normal.
He was on day 92 of his recovery when he shared his story with CTVNews.ca.
It’s been a long journey for Tracey Thompson, too. She was on day 88 of her recovery when she spoke with CTVNews.ca. She started showing symptoms on March 15.
While she initially didn’t have any of the usual respiratory symptoms associated with COVID-19, such as coughing or trouble breathing, she did experience a fever, gastrointestinal issues, and fatigue.
“I was very concerned about it,” she recalled during a telephone interview from her home in Toronto in early June. “I didn’t know what was going on and I was definitely not OK. It wasn’t anything I had experienced before.”
As the weeks dragged on, Thompson said new symptoms would appear, disappear, and then reappear with no warning. She had days where she felt like she was in a fog, she had rolling fevers, sore throats, chest pain, and lost her sense of smell and taste.
Because she works in a restaurant in Toronto that’s currently closed because of the pandemic, Thompson has been able to ride the wave of new symptoms in isolation at home.
“I’m in limbo,” she said. “Every week I keep thinking, ‘OK it’s going to be over’ and every week it’s not and I can’t get any answers.”
Thompson has tried to find those answers by calling telehealth and visiting her local testing unit, but she hasn’t been given a clear explanation as to what is happening to her. She believes her symptoms are from a COVID-19 infection.
That’s why she resorted to a popular Facebook support group called Survivor Corps, which aims to connect COVID-19 survivors and share information on the disease.
And it appears Thompson isn’t the only one in search of answers.
The Survivor Corps group has more than 54,000 members, many of whom describe themselves as “long-haulers” who have suffered from symptoms for weeks or even months.
Another popular COVID-19 support group, created by a New York City-based queer, feminist collective called Body Politic, has had more than 4,000 members join their discussion channels on the messaging platform Slack.
One of their busiest Slack channels is dedicated to people who have had symptoms for more than 30 days. It’s a place where members can “feel connected and supported through infection, symptoms, and recovery,” according to the founders.
Body Politic recently conducted a survey of 640 of their long-haulers, which is not peer-reviewed or representative of the entire group, and found that symptoms among respondents were not limited to cough, fever, and shortness breath.
In fact, some of the more widely reported symptoms included fatigue, body aches, headache, brain fog, gastrointestinal issues, dizziness, chills, sweats, and trouble sleeping.
Interestingly, the survey found the majority of respondents were between the ages of 30 and 49 (62 per cent).
The survey also noted that nearly half of respondents (48 per cent) were denied testing or didn’t receive a test for another reason. Of the quarter who tested negative for COVID-19, they were, on average, tested six days later into their illness than those who tested positive.
While many respondents in the survey and commenters in the support groups tested negative for COVID-19, if they were tested at all, that doesn’t necessarily mean they didn’t have the disease.
In March, when Desjardins, Borg, Thompson, and many others in these groups started showing symptoms, nasal swabs used for testing for COVID-19 were in high demand and in most areas, reserved for those with compromised immune systems, health-care workers, people in close contact with infected individuals, and travellers recently returned from international locations.
During this time, people with mild symptoms who did not require hospitalization and who were not at a higher risk of a serious outcome were advised to isolate themselves at home and monitor their symptoms.
It wasn’t until the end of April to mid-May, when testing became more widely available to residents in Canada, that people like Desjardins and Thompson were finally able to get tested.
Like many others in the support groups, they both tested negative.
Thompson said a health-care worker at Mount Sinai Hospital’s assessment centre in Toronto emailed her to tell her that even though she received a negative result, she most likely had COVID-19 at some point and she’s “not crazy.”
“She’s like ‘Oh yeah, you definitely had it,’” Thompson recalled.
Dr. Iris Gorfinkel, a family physician and medical researcher in Toronto, has been particularly interested in the topic of long-term symptoms.
That’s because several of her patients and her sister, a family doctor based in Chicago, are currently going through it.
Gorfinkel said there are a number of possible explanations as to why long-haulers receive negative test results when they are tested. She said there’s the possibility that the test isn’t picking up the virus because it’s only taking the sample from the area inside the nose.
“When we do a swab, we’re limited to the one area that the swab has touched,” she explained during a telephone interview in early June. “If I swab the nasal pharynx, I’m testing the one area that that’s touched… There could be tons of virus that’s like two inches below that.”
Initially, COVID-19 was considered a respiratory illness, but Gorfinkel said researchers now know coronavirus, or SARS-CoV-2, can infect different organs or regions in the body, such as gastrointestinal areas and the neurological space. She said the virus has been found in stool samples, in blood, and even in cerebral spinal fluid.
Another potential explanation for the negative test results may be that the virus has already damaged these areas in the body and has since cleared by the time the person is tested, Gorfinkel said.
For example, she said the loss of smell and taste is a result of damage to the olfactory nerve.
In addition to Gorfinkel’s explanations above, there have been concerns about the reliability of nasal swabs after several documented cases of false positive and false negative test results.
A number of factors can affect the outcome of the tests, including the quality of the sample, the type of tools used in the test, and what stage of infection the patient was in when they received the test.
According to one study, a false negative result became more likely if the patient was tested a week after their first symptoms emerged.
Timing was the reason Borg said he never bothered to get tested. He said by the time he was eligible for a test, he figured it was too late and the result would just come back negative. Instead, he said he’s waiting for a serology or antibody test to become available in Canada, which might indicate whether he had COVID-19 due to the presence of antibodies to the virus in his blood.
Even without the confirmation of a positive test result, Desjardins, Borg, and Thompson, and countless others in the support groups are convinced they contracted COVID-19 and that is what’s behind their persistent and sometimes debilitating symptoms.
“People in my situation are pretty frustrated because you kind of feel like you fall through the cracks of the health-care system,” Desjardins said. “I’m pretty positive that this is what I have.”
Because research on COVID-19 is still in its infancy, there could be more than one explanation as to why some patients experience chronic symptoms and the majority don’t.
Amir Attaran, a professor of law and epidemiology at the University of Ottawa, said he was reluctant to speculate on why this happens to certain individuals, but said he thinks it’s related to the immune system.
“There is undoubtedly in some COVID patients an abnormal reaction of the immune system that can contribute to the pathology that they experience,” he said during a telephone interview in early June.
While Attaran didn’t feel comfortable going into specifics, Rob Kozak, a clinical microbiologist at Sunnybrook Hospital in Toronto who helped isolate the SARS-CoV-2 virus in March, said there could be several reasons for an abnormal immune response.
Kozak said there is the possibility that “molecular mimicry” is occurring, where proteins in the virus might resemble proteins in the person and the immune system has trouble distinguishing between them.
“The immune system has been all geared up fighting the virus and it recognizes proteins on the virus and goes out and attacks it. But then once all the virus is cleared, it sees proteins in the host that look not identical, but similar, and it thinks the fight is still going on,” he explained during a telephone interview from Toronto in early June.
Another explanation, according to Kozak, is that even after the infection clears, viral RNA or genetic material from the virus remains in the body and the immune system detects it and launches another attack.
“The immune system doesn’t realize that the fight is over,” he said. “It sees these parts of virus and it continues to produce inflammation, produce cytokines [small proteins that regulate inflammatory responses], produces inflammatory response.”
Kozak said the long-lasting symptoms in certain individuals could be the result of either explanation or a combination of both. However, he said because there are so few cases and limited data, it’s difficult to know what is really responsible for the various conditions.
Gorfinkel, too, agreed there is the possibility of an overzealous immune response that is unique in certain patients.
“There are lots of individuals who will get it, who are older, who are at high risk, they’ve got every risk factor, and yet they get over it,” she said. “It’s not just a question of being older and having chronic conditions, it’s much more complicated than that.”
While Gorfinkel said the immune system may play a role in what is occurring in long-haulers, she also said these patients could have other health problems or conditions that are causing these symptoms, but they’re being overlooked because of all of the attention on COVID-19.
“So when patients have problems, and COVID is a huge footprint [top of mind] in the brain does that mean that it’s always COVID? No. We have to still think could it be other diagnoses?”
Because the topic of the pandemic has become unavoidable, Gorfinkel said that some individuals may be experiencing physical symptoms stemming from psychological issues.
“Previous influenza epidemics have been associated with an increase in anxiety, insomnia, fatigue and depression,” she said.
What’s more, Gorfinkel said people who did contract COVID-19 may have lingering physical symptoms that are the result of the psychological trauma they have experienced during the crisis.
Finally, Attaran said doctors and researchers still need time to study the viral pathogenesis – how the virus causes pathology and illness – before they can fully understand the long-term symptoms in some individuals.
“This is just going to be a great medical mystery for years to come,” he said. “We’ll figure it out.”
And while these chronic symptoms may only affect a minority of COVID-19 patients, this uncertainty combined with prolonged illness can be life-altering for those experiencing it.
“I think the majority of people don’t get it,” Thompson said. “It’s not like anybody’s visiting me in the hospital or anything like that, but… I don’t think that people understand how debilitating it is.”
Gorfinkel, however, said the body is capable of eventually recognizing a viral infection and developing an adequate response to it over time.
“We know that the body’s immune system is capable of incredible feats and that is true even long after a disease is established,” she said. “So just because they’ve had it for months, that does not mean it’s going to go on forever after that.”
With files from The Canadian Press
Edited by CTVNews.ca producers Kieron Lang and Sonja Puzic.