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Coronavirus

The “Long-Haulers:” These Coloradans got COVID in March — and their symptoms haven’t gone away

They were the accidental pioneers, navigating a mysterious illness that doctors didn’t yet understand. Eight months later, some are losing their hair and fatigue persists.

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Michael Roach, Maggie Glass and Alyssa Berge all contracted the coronavirus in March. Eight months later, they’re still suffering.

For some, coronavirus strikes and its torment does not subside.

Some of the first people to contract COVID-19 back in March have now suffered symptoms every single day since then —  eight entire months. The virus has attacked their bodies in various ways, impacting their lungs, their blood and their brains. 

It’s not yet known why for some people, coronavirus causes long-lasting, debilitating health issues that linger for months as one symptom morphs into the next. Researchers are tracking the growing list of long-term ailments: shortness of breath, blood clots, numbness in the limbs and the brain fog that patients say feels like dementia. 

The Colorado Sun interviewed three Coloradans who contracted the virus after the pandemic came to this state. There is no pattern to their journeys. What they have in common is that after eight months, they’re still sick.

Michael Roach, 30, Longmont

Michael Roach was in the shower when he realized he couldn’t smell his soap. 

It was mid-March and for the prior week, Roach had felt like he had a cold. The pandemic was on the news, but it was just beginning in Colorado, and there were no tests for COVID-19. He and his fiancée had just returned from a friend’s wedding in New Orleans, knowing it was risky to fly but not wanting to miss the occasion. 

Roach, 30, got out of the shower and rubbed peppermint oil in his nostrils. “I thought, ‘I have to smell this.’ I couldn’t,” he recalled, describing the first days of what has turned into an eight-month journey to regain his health. 

The respiratory problems were the worst for Roach, who had to quit his job doing water system maintenance for the city of Lafayette because he struggled to breathe, all day, every day. It began as a burning sensation in his nose and traveled down his throat and into his lungs. He felt squeezed and squished.

Michael Roach, 30, contracted COVID-19 in March. The illness has lingered for eight months, causing him to lose his job and postpone his wedding. (Provided by Michael Roach)

“I started feeling like I was stuck inside of a trash compactor, like all the air was being sucked out of me,” he said. “I could not expand enough to get any air in. It’s a terrible feeling.” 

And as the weeks went by, the feeling that he couldn’t breathe didn’t go away. A month in, he wondered whether it was better if he were dead, and in the worst of moments, he thought of suicide. “I couldn’t think of anything else but trying to catch my breath all day,” he said. “I was completely dysfunctional.”

Roach, who had always been healthy, tall and lanky at 6-feet tall and 155 pounds, went to the hospital a few times, but said he was offered steroids, told to relax, and then sent home. Even those closest to him, his fiancée and his mom, told him it was anxiety, and that he needed to stop obsessing about trying to breathe. 

His mind was jumbled, his short-term memory was so bad that he had to ask people to repeat things “eight to 12 times,” like he had dementia. Roach’s buzzed hair started to thin, and he felt what seemed like a blood clot pulsing behind his knee, like his “leg had a headache.” 

He turned to the internet, searching for information about his symptoms, wondering if anyone else out there who had COVID-19 felt like they were losing their mind. When he found a Facebook group for so-called long-haulers, called Survivor Corps, Roach was instantly overwhelmed with relief. 

He wasn’t alone. 

The doctors weren’t a help whatsoever at that point. I hate to say it. We were totally on our own.

Michael Roach

“The doctors weren’t a help whatsoever at that point,” he said. “I hate to say it. We were totally on our own.” 

Roach’s new online “family” helped him more than any trip to the hospital ever had. They discussed herbal remedies, and that Pepcid AC, an antacid and antihistamine used to treat heartburn, was helping people reduce the inflammation in their bodies. Roach was trying an anti-inflammatory diet, but switched to the even-more-strict antihistamine diet based on the advice of the group.

He could feel a difference almost instantly, and within a week, he was starting to breathe easier. But if he slipped up, like had a cup of coffee, he would feel it immediately — headache, stomachache, pain all over his body. “I used to drink five cups of coffee a day. Then I couldn’t touch it,” he said. 

Roach tested positive for coronavirus antibodies in early May, after labs were able to detect through a blood test whether someone had the virus in the previous weeks or months. In a way, he was relieved to finally know for sure what was wrong with his body. 

In August, five months after he first got sick, Roach finally began to feel better. But then the wildfires started, choking the Colorado air with thick haze and prompting warnings that even healthy people should stay inside. Roach felt his lungs contract, and he and his fiancée decided to “make a run for it,” to go somewhere he could breathe.

They headed northwest, hoping to make it to Washington or Oregon. But at that point, California was on fire, too, and as they trekked through Idaho, smoke was pouring into the cab of their truck. Roach sealed up the air vents, plugged in an air purifier and turned it on full blast. Still, he recalled, “the smoke was absolutely crushing me.” 

The couple gave up, turned the truck around and headed back to Colorado. 

The first night back at home in Longmont, Roach thought he would die. His body shook as he gasped for air. 

Soon after, Roach and his fiancée bolted again, this time heading east to Michigan to stay with family, just to get away from the smoke. Roach didn’t return for more than two months, and grew stronger each day. He returned to Colorado only a few weeks ago, a month after his fiancée returned with their car, and even though he had COVID-19 antibodies that could provide immunity, he wore two masks and a pair of swimming goggles on the flight home. 

Today, Roach considers himself only 85% better, because — eight months later — he still has a lingering cough and finds it hard to breathe in the morning and at night. He’s scheduled to go in for a lung X-ray soon, and is afraid of what it might show. He doesn’t want to see proof of the damage. 

If COVID had never happened, Roach and his fiancée would have married in September. Instead, they pushed the wedding until September 2021, hoping that by then he will have regained his strength. Roach also managed recently to pass a financial exam, despite what he calls his “COVID brain,” and is working as an investment adviser in his own firm, one bright spot in an awful year.

His fiancée never had a symptom. 

Roach returns regularly to the Facebook page for support from people who get it. “You all are like family,” he posted recently. “Seriously.” 

Maggie Glass, 43, Highlands Ranch

For Maggie Glass, life before the coronavirus moved fast. The mom of three boys and in-demand event planner buzzed from kids’ sports practices to consulting gigs to the airport to fly to out-of-state jobs. 

Contracting the virus in March, she said, was like running full speed into a brick wall. Her life just stopped. 

Eight months later, Glass still has a fever. Every day. A fever that hurts behind her eyes, to the point she can’t drive. A fever that makes her head and neck ache, and that makes her want to sleep. 

The fever came in late March, after Glass had traveled to Oregon and Las Vegas and Summit County. The longer it lasted, the more panicked she became. She called and emailed her doctors every week, asking for help. 

“I’ve had a fever for a week. Two weeks. Five weeks,” she told them. “This is insane.” 

Maggie Glass, 43, has lived with a fever nearly every day for the last eight months. Doctors believe COVID-19 attacked her brain. (Provided by Maggie Glass)

Glass could not get a test for COVID-19 because she didn’t fit the criteria at the start of the pandemic — meaning she had not been around anyone who had tested positive and that she had not recently traveled to China. By the time she finally got a test, more than a month later, it came back negative. 

But the fever remained. Even when the body aches and severe flu-like symptoms of those first weeks had faded, the fever did not.

Doctors tested her for multiple sclerosis, cancer and AIDS. Then, during an MRI, they found lesions on her brain, or more specifically “white matter hyperintensities,” something normally associated with traumatic brain injury caused by a car crash or some other violent event. 

The coronavirus, doctors deduced, had attacked her brain. Glass was diagnosed with “post-viral syndrome,” the closest she would come to an actual COVID diagnosis, and grateful to at least have a name for the disease that ransacked her life. 

Before this, she was a healthy, energetic person with a theater degree who craved networking, and earned half of her family’s income planning parties and events. “I love events — it’s my life,” she said. “I’m like go, go, go. It’s robbed me of all of that. I’ve been in my pajamas and I’ve been in bed.”

Glass hasn’t been able to work or even drive her sons, twin 14-year-olds and a 10-year-old, to their activities. Light hurts her eyes and her head. Glass’ husband, who has always done some of the cooking and cleaning, does everything now, she said, often bringing her dinner in bed because she is too weak to come to the kitchen. The noise of her family talking and watching TV in the living room makes her head pound. It’s a struggle to find enough energy to take a shower. 

I have to be careful because I really want to do some stuff, and by stuff I mean, like clean the shower. But if I do too much, I will pay for it the next day. I will start the day at 101.

Maggie Glass

When she has a good day, when the fever stays away until night, Glass reminds herself not to do too much. “I have to be careful because I really want to do some stuff, and by stuff I mean, like clean the shower,” she said. “But if I do too much, I will pay for it the next day. I will start the day at 101.”

The fever mostly hovers from 99.5 to 102 degrees. One night back in May, it spiked to 103, and Glass was convinced she would not wake up in the morning. “What if I die from this fever and it just melts my brain,” she wondered.

Even as Glass’ mom and two sisters, who live in other states, texted her, she didn’t have the strength to answer. She was delusional. “I felt out of my mind,” she said. 

One of her sisters sent a link to a Facebook group she’d discovered, a now-private group for long-haul “COVID fighters.” Glass began to cry when she opened the page, to see there were 2,000 others suffering, too, many of them with fevers that persisted for months. 

After three days, she posted: “I’m scared. I don’t know if I’m losing my mind.” 

Strangers flooded her post with replies. “We believe you,” they said. And Glass, who still has family and friends who wonder if she’s a hypochondriac and the symptoms are in her mind,  burst into tears. 

Besides the fever, Glass has migraines and stomach problems. She didn’t lose her sense of taste, exactly, but foods taste metallic, she said. To her, perfectly ripe fruits and vegetables taste as if they’ve turned rotten. 

Glass’s sister started a GoFundMe page to help support the family while she can’t work. Glass, meanwhile, signed up for a virologist’s study that will involve submitting a stool sample for testing to determine whether there are traces of COVID-19 in her digestive system, going deeper than the COVID antibody test in August that came back negative — five months after her doctors believe she contracted the coronavirus and perhaps after her antibodies had already worn off.

Glass’ therapist tells her she has a chronic illness and she will need to learn to cope. Her doctors, though, offered some hope: the brain lesions could heal within one to two years.

Upcoming brain scans, however, will help answer an important question: Are the daily fevers still damaging her brain? 

“I still have a fever right now,” she said. “It’s been eight months.” 

Alyssa Berge, 50, Westminster

Alyssa Berge noticed in June — three months after she got sick with COVID-19 — that her long, silver hair was falling out. Her once-thick locks feel thin to her now, and she’s always picking strands from her clothes. 

The hair loss was just one more weird symptom on a growing list of ailments that has overshadowed the rest of Berge’s life since last March, when COVID-19 struck with a fever and body aches. For two weeks she’d had a cough. 

“I went for a walk in the morning and I was feeling pretty good,” recalled Berge, who is 50 and a child protection supervisor. “In the afternoon, I just got that ‘hit-by-a-Mack-truck’ feeling.” 

The fever and fatigue gave way to an even-worse cough and trouble breathing, and later, digestive issues that felt like acid reflux. Three months in, Berge began experiencing dizzy spells and the sensation that her head was being squeezed by a tight headband around her eyes. 

There was no linear improvement, no progress. Every day was just as bad as the one before.

Said Berge, whose initial searches yielded little public information about her symptoms that later emerged as COVID-19 features. for information about her sympt

“I would describe it like a whack-a-mole disease,” said Berge, whose initial searches yielded little public information about symptoms that later emerged as signs of COVID-19. “I felt like I was one of those front-liners that they were learning from.” 

Alyssa Berge, 50, began losing her hair three months after contracting COVID-19. It’s been one in a long list of symptoms that have persisted since March. (Provided by Alyssa Berge)

Berge was her doctor’s first COVID-19 patient, even though she wouldn’t get an antibody test to prove it until months later. When she first got sick, her health provider, Kaiser Permanente, was reserving its coronavirus tests for hospitalized patients.

Berge went to an urgent care facility in April because she had chest pains and trouble breathing. A scan revealed opaque spots in her lungs that looked like ground glass. A month later she was at an emergency room with severe stomach pain. In June, Bergen had an endoscopy so a doctor could look down her throat to find out why she felt like she had a lump when she swallowed. She started taking a medication for acid reflux.

When the dizziness came, Berge was sent for a brain scan. 

“It’s three months in and then I’ve convinced myself I’ve got a brain tumor because this can’t be COVID anymore,” she said. 

Her brain was fine, but Berge started talking to her doctor about anxiety. 

I would wake up at 4 a.m. and my whole body was shaking. Is it the anxiety that is causing the shaking or is the shaking making me anxious?

Alyssa Berge

“I would wake up at 4 a.m. and my whole body was shaking,” she said. And she would think, “Is it the anxiety that is causing the shaking or is the shaking making me anxious?

“These six months I looked like a hypochondriac freakazoid.” 

A prescription for anti-anxiety medicine was key, as Berge felt her body relax and the symptoms gradually fade. Now, eight months after first falling ill, she feels like she’s nearly recovered. 

Berge’s doctor believes her body had an overactive immune response to the virus, which led to inflammation, which can cause all sorts of problems — from acid reflux to muscle issues to neurological disorders. 

As of about a month ago, Berge still had coronavirus antibodies in her blood. Her husband, who also had COVID but recovered within a couple weeks, still has them, too. Berge has signed up for four coronavirus studies, calling herself a “science experiment.”

She still gets headaches sometimes, and doesn’t feel quite full strength. Berge jokes that, since she got sick right after her 50th birthday, that people are not joking that “everything goes to hell” at 50. She warns her coworkers during Zoom calls that they shouldn’t dismiss a runny nose or a stomach ache. Not these days. 

“I don’t trust anything now,” she said. “Everything could be COVID.” 

Rising Sun