SALT LAKE CITY — When it comes to the new coronavirus, science has come a long way in a relatively short amount of time.
There’s even news this week that a vaccine that is 90% effective may be ready for regulatory approval, an unprecedented turnaround time to inoculate against a virus that was discovered only a year ago.
Once widely distributed next year, that vaccine could prevent millions from ever contracting COVID-19. But for millions of others — more than 10.3 million in the United States, to be precise — it’s too late to avoid the virus. And while the vast majority have survived or will survive the coronavirus, a significant percentage of those people will experience lingering, debilitating symptoms long after the acute illness is gone.
Meet the “long-haulers.” That’s how people with lingering COVID-19 symptoms describe themselves, dealing with the virus for the long haul even after surviving the infection itself. Long-haulers first gained attention over the summer, once it became clear their illness wasn’t all in their heads.
Physicians at the time didn’t know what to make of long-haul symptoms; many thought the symptoms were the self-inflicted results of depression, anxiety and the power of suggestion. Over time, though, a fuller picture of the mysterious ailment has emerged.
A negative test and a ‘holy cow’ moment
Take Tanya Hovey’s case. Hovey was a Kaysville maternity and newborn photographer who stayed active and healthy with long-distance bike rides before the pandemic. She told KSL.com her family took COVID-19 very seriously because her husband is at high risk for a severe case. But a family member left for a cruise in March, Hovey said, and she believes they “brought the virus home to us.”
Like many long-haulers, Hovey tested negative for COVID-19 and didn’t think she’d had it for several months. Even now, she believes her initial illness was fairly mild despite the strange symptoms it involved, like a metallic taste in her mouth and tremors in her chest.
It wasn’t until months later when she started doing research about her puzzling constellation of ongoing symptoms — dry cough, dizziness, shortness of breath, a racing heart and debilitating fatigue — that she realized there were many more like her with a lingering illness traced back to COVID-19. And she realized, too, that a negative test isn’t definitive. “I was like, ‘Holy cow, I think I had COVID.'”
In an online presentation on long-haul coronavirus, local Dr. Lucinda Bateman said it’s been “a little bit of a challenge” to study the phenomenon because “many people didn’t get tested, or they had false-negative tests.
“And the antibodies don’t stay around a long time,” Bateman said, “so we have a lot of long-haulers and people with post-viral symptoms that are really frightened and not getting the care that they need.”
Hovey was passed between an urgent care clinic, an allergist, her primary care physician, the emergency room, an ENT, a pulmonologist, a cardiologist and a neurologist in a search for answers. She learned about postural orthostatic tachycardia syndrome — or POTS — through her own research. POTS is a type of dysautonomia — a problem with the autonomic nerve system — that can cause the heart to race when standing up after periods of sitting or lying down.
“I was like, ‘Wow, I kind of fit these symptoms,'” Hovey said. She asked her cardiologist about the syndrome, and he put her on a vasoconstrictor drug to narrow her blood vessels.
“Lo and behold,” Hovey said, “I was able to get out of bed.”
Suspicion confirmed. And, finally, a diagnosis. Hovey has POTS.
‘My body has a meltdown’
Since her POTS diagnosis, Hovey has also been diagnosed with mast cell activation syndrome and may have chronic fatigue syndrome as well, all of which were discussed for months as possible diagnoses for post-COVID patients. The famed Minnesota-based Mayo Clinic is a national leader in dysautonomia treatment and studies, and Hovey was able to travel there last week to be examined.
“I actually meet with my doctor (virtually) Friday,” Hovey said, “to go over my test results.”
Hovey’s initial battle with COVID-19 was tough but no worse than the flu, she said. But her long-haul symptoms have cost Hovey her normal way of life: She’s closed her photography business and can’t bike like she used to. Hovey said on a good day, she feels 20% as strong as her former self. And while her syndromes are treatable, they aren’t yet curable. “I will have them the rest of my life,” she said.
Just standing up can be an adventure. “My body has a meltdown,” Hovey said. “It hyperventilates, and I get these crazy tremors. They’re just violent. My hand was slamming the table. It’s just crazy — and then I go stiff. So yeah, my autonomic nervous system is jacked up.”
The path forward
Hovey is a part of the local long-hauler support Facebook group Lisa O’Brien started for Utahns with long COVID. O’Brien has been an advocate for the Utah long-hauler community for months now, pushing for more long COVID research, resources and — above all — for her community to be believed and supported. Her group now has 575 members.
“A lot of people are now being diagnosed with dysautonomia,” O’Brien told KSL.com. She said Wednesday marks her “eight-month anniversary” of getting sick from COVID-19; and while she’s feeling better than she did a few months ago, O’Brien still isn’t back to normal. “I’m still having random high heart rates, maybe once a week,” she said. “When I do short walks, my heart rate is very dysregulated.”
And she has a mental “fog” she said makes it hard to think straight or recall words sometimes. “I’ll mix up words, or use the wrong word, and I play a game of charades all day long with people,” O’Brien said. “Like, ‘You know that thing you park your car on out in front of your house?'”
O’Brien is advocating for a local hospital or university to undertake a formal study of post-COVID treatment and symptoms. She also provided KSL.com a letter she intends to share with the governor’s office and other leaders that calls for more funding for clinical research; outpatient support and rehab; paid leave and disability; full insurance benefits, plus research and treatment eligibility, based on clinical diagnoses alone (that is, not denied because of a negative COVID-19 test); and diagnostics guidelines and education for health care providers.
“We anticipate that the syndrome will have a significant and ongoing impact on public health and the economy,” the letter says.
It’s estimated that somewhere between 10% and 25% of COVID-19 patients will experience lingering symptoms to some degree. The numbers come from a study out of King’s College London and the Michigan COVID-19 Recovery Surveillance Study, respectively.
‘An area of very active research’
The thing about a syndrome, though, is that it doesn’t really explain why symptoms are occurring. That’s all a syndrome is, after all — a collection of symptoms. Dr. Rachel Hess, a primary care physician at University of Utah Health who sees many adults with post-viral symptoms, said there’s still a lot to learn about the problem.
“I think that what we don’t know is severely outweighing what we do know,” Hess said. “We’re in a place of more questions than answers right now.”
Hess said that with so many Utahns now being diagnosed with COVID-19, she hopes it will become easier to study long-haul coronavirus and shed more light on the issue. She said she is working on a study with Dr. Adam Spivak that follows some COVID-19 patients in the long-term. While the results aren’t in yet, Hess said anecdotally she is seeing patients experiencing fatigue, loss of taste and long recovery times.
“I don’t think that we have a really great explanation for why some people are continuing to experience symptoms and why others are not,” she said. “The symptoms seem to be not correlated with the severity of illness that the person experienced, in the same way that we would typically think of it. So we’re not seeing that fatigue and saying, ‘Oh, that person was in the intensive care unit for several weeks. They’re just recovering from being in bed.’ We’re seeing people who had relatively mild courses still have those chronic, lingering symptoms. And I don’t think we fully understand the reasons for that.
“That’s an area of very active research, trying to understand what the immune patterns are and the body’s physiologic responses that may be triggering those.”
Hess said the U. is “looking into how to best approach the care” for post-viral patients, whether that be remaining in primary care or moving to specialty practices.
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