Lindsay Polega’s two-year odyssey with long-covid shows how the medical system fails many patients.
Her life has become a series of doctor’s appointments crisscrossing the towns around her home in St. Petersburg, Fla.: Her primary-care physician sent her to an immunologist. The immunologist referred her to a cardiologist. The cardiologist sent her to a nephrologist and an endocrinologist. The endocrinologist thought she might learn more from a neurologist. But when the neurologist’s tests failed to find any potential cause, Polega was sent back to the immunologist.
At one point, one of her doctors — flummoxed by medical science’s inability to explain what was going on — advised her to consider isolating at home indefinitely in the hope that might help her avoid triggers for illness.
“I wonder, ‘Is this going to be the rest of my life?’” Polega said. “I can’t live in my room forever. That’s not a good answer. That’s not treatment.”
Polega’s demoralizing, two-year odyssey speaks to the dysfunction of the organ-centered U.S. health-care system when it comes to long covid and the challenge of trying to treat an ill-defined illness for which there is no clear cause and no test, and for which the number of documented symptoms now stretches to more than 200. Many of the country’s top medical centers have set up multidisciplinary clinics to see long-haul patients, but advocates say there aren’t nearly enough to handle the millions of Americans expected to be dealing with lingering issues from covid-19 in coming years, leaving most of them struggling to navigate a maze of doctors and diagnoses on their own.
As the world enters its third year with the coronavirus, more than 425 million people have been infected, and researchers estimate that anywhere from 10 to 30 percent could experience symptoms of long covid months after recovering from their initial illness.
“The cohort of patients with long Covid will face a difficult and tortuous experience with our multispecialty, organ-focused health care system, in light of the complex and ambiguous clinical presentation,” Steven Phillips, vice president of science and strategy at the Covid Collaborative, a coalition of experts, and Michelle Williams, dean of the Harvard T.H. Chan School of Public Health, wrote in a recent perspective piece in the New England Journal of Medicine.
Christina Martin, an advanced practice nurse with the long-covid clinic at the Dartmouth-Hitchcock Medical Center in New Hampshire — one of dozens of such centers around the country — describes her job as being a quarterback or point guard, helping direct care in the right directions.
“By the time they get to us, they know something is wrong. But every test says they are ‘normal,’ so they are starting to think maybe they are crazy after all,” Martin said, “when the reality is their conditions are just so complicated, it’s difficult for a single specialist to see the full picture.”
Lindsay Polega was part of the first wave of Americans infected with the coronavirus before the nation began to shut down on March 15, 2020 — before social distancing, before masks and before vaccines. She was statistically likely to weather the illness without any issues given her age, health and high fitness level: She ran, swam or attended some kind of fitness class every day.
But the virus nonetheless knocked her out for a month and a half, and she never got back to her old self.
Pain in her chest was just one of a number of symptoms that appeared and sometimes disappeared, only to reappear, over the next few months. Her blood pressure spiked throughout the day, at one point reaching 210/153 — greatly exceeding the 120/70 considered normal.
Scrolling on her phone caused vertigo, blurriness and disorientation.
She became sensitive to light.
She was sometimes dizzy and heard ringing in her ears.
She had crushing joint pain.
And she swore she could smell fish, even when there wasn’t any around. One day she tore up her car looking for what she insisted was a forgotten and rotting fish taco as her confused boyfriend looked on.
Post-infectious syndromes, first described in the 19th century, are among the most mystifying and controversial areas of medical science, with generations of doctors dismissing symptoms as mostly psychological.
It wasn’t until 2006 that the Centers for Disease Control and Prevention launched a public education campaign to raise awareness about one such condition — myalgic encephalomyelitis, better known as chronic fatigue syndrome, emphasizing that it was “a real illness” and that people with the condition needed “real medical care.” Researchers have also recognized increased reporting of post-viral syndromes after the SARS outbreak of late 2002 to 2003, and after people have been sickened by the Epstein-Barr virus, Lyme and other pathogens.
Now with long covid, which has many symptoms that overlap with those of chronic fatigue syndrome, research is finally beginning to take off. The National Institutes of Health last year launched a $1.15 billion initiative to better understand long covid, which will include 40,000 adults and children.
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One leading area of research is exploring possible dysfunction in the body’s autonomic nervous system, which controls unconscious functions such as breathing, heart rate and digestion.
Another theory is that the virus continues to hide out in reservoirs in the body, creating inflammation that triggers all kinds of symptoms. A third possibility is that the body’s immune system is overreacting or misfiring in these situations and attacking itself.
A Government Accountability Office report, published in March, estimates that up to 23 million Americans are affected by long covid, with 1 million out of work. It suggests that organ damage from the virus and micro-clotting in the blood vessels may also be related. But while these ideas are animating research, scientists say there’s a long way to go before they lead to interventions and treatments.
Patients, researchers partner on long covid research
By the summer of 2020, Polega realized that she was not getting any better. She had been in the emergency room three times already because of chest pains and fainting, and she began pushing harder for answers.
Polega had been working as a law clerk during the day and as a part-time instructor at a kickboxing gym some evenings and weekends, as well as doing some dog sitting — a more relaxed schedule than she kept during the school year. But it was still too much. The hypertensive spikes started to amp up, which brought along chest pain. On a few occasions, she had to leave work early. Co-workers and members at the gym, where she wore a heart monitor, commented on how high her pulse rate would be with just a few minutes of activity.
That was when her primary-care physician referred her to an immunologist — the first stop on her sojourn from one specialist to another, long an issue for patients with complex conditions, such as cancer and chronic Lyme disease.
Polega’s primary-care doctor had wondered whether some of her symptoms might point to rheumatoid arthritis or another condition in which the body’s immune system misfires and attacks itself. The possibility made sense based on Polega’s medical history, too. She was allergic to peanuts, tree nuts, sesame and pollen, and recent research had suggested a potential link between allergens and the development of autoimmune disease.
In July 2020, the immunologist ran numerous blood tests, according to her medical records. The doctor ruled out lupus and other possible autoimmune conditions, but Polega did have elevated inflammation markers, which explained the joint pain.
Stumped, the immunologist referred her to a cardiologist whom she hoped might have more insight.
One of the biggest surprises about the coronavirus when it hit the United States was the discovery that the virus could directly attack the heart and blood vessels and lead to myriad conditions, some rare, some more common, including a hardening of heart walls, an inflammation of the saclike tissue surrounding the heart, clotting and stroke.
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Given Polega’s frequent and unusual chest pain and the severity of her high blood pressure, she got a full work-up.
Her echocardiogram, an imaging test that looks at how the heart’s chambers and valves are pumping, was good. So was her treadmill test, which looked at how her heart worked under stress. A cardiac CT calcium score exam, which helps evaluate the amount of calcified plaque in the heart, also came back without any concerns.
The doctor prescribed heart medication — 25 milligrams of eplerenone, twice a day, to lower her blood pressure. She cautioned Polega that she shouldn’t get pregnant on the medication, which is typically used after heart attacks, since it is associated with low-birth-weight babies.
Polega would later recall that moment as the worst of her ordeal. It was the first time she realized how her illness might change the trajectory of her life in ways she had never imagined. She was not ready just yet to have a baby, but she knew she wanted children and had recently purchased a house with her longtime boyfriend. “It felt like a really big thing, a scary thing, because I thought, ‘What if this doesn’t go away, will they be able to find a safe way for me to be pregnant?’”
Then the cardiologist sent Polega off to the next set of doctors — a kidney specialist and an endocrinologist — to make sense of other symptoms.
The kidney doctor was her most straightforward appointment. Throughout the pandemic, some adults with covid-19 developed kidney injury, and a number had to go on dialysis, a treatment in which blood is pumped out of the body and waste and excess fluid is removed.
That was not Polega’s situation, as it turned out. Her kidney readings were “just a touch out of normal,” she remembers the nephrologist explaining. “It’s probably more that your body is just still ‘angry’” from the covid infections. He asked Polega to come back every three months to run labs to make sure things were improving.
The body’s endocrine system is made up of several glands that secrete hormones, and specialists in this field work on all sorts of related medical issues — metabolism, growth and development, tissue function, and sleep. During the pandemic, doctors noticed a number of potentially related symptoms: a loss of smell and taste, fatigue, a worsening of diabetes, and in some cases the onset of diabetes.
The endocrinologist’s first thought was something entirely different: Might Polega have a tumor, unrelated to covid?
MRIs did not pick up anything, so they began looking at adrenal insufficiency, in which the adrenal glands — small, triangular organs on top of the kidneys — don’t make enough cortisol, which is known as the “stress hormone” and assists in controlling blood sugar, reducing inflammation and helping memory formation. This condition has been seen in long-covid patients, but in Polega’s case, her cortisol level had risen during the course of her illness, then went back to normal in a few weeks, so it was unlikely to explain her continued issues.
Blood tests did show a different problem, however: oversecretion of a different hormone from the same gland — aldosterone, the body’s main regulator of the balance of salt and water, which can lead to upper-body obesity, muscle and bone weakness, and high blood pressure. That didn’t explain all of Polega’s symptoms, but it was a start.
The doctor suggested additional follow-up to look at potential issues with her pituitary gland, a pea-size organ located at the base of the brain. Nicknamed the “master gland,” it directs other glands to release hormones. Polega was told that testing was best handled by a neurologist, a specialist who deals with the central nervous system, which is made up of the brain and spinal cord.
As 2020 ended and 2021 began, Polega felt like her situation might be stabilizing. Some early symptoms, particularly the problems with her vision and sense of smell, had disappeared, and her blood pressure spikes were not as frequent or intense. Then in February 2021, she got covid again.
The second infection was milder than the first, like a bad cold. But her long-covid symptoms roared back — and she started noticing another odd symptom. When she woke up her hands were numb. At first it was just a few times a week, but then it started happening every day.
“It’s like when you’ve been sitting on your feet wrong and you get pins and needles,” she explained.
The tests administered by the neurologist, meanwhile, showed nothing obviously amiss in her brain. The MRI had come back “unremarkable,” her doctor wrote in her notes.
Next, the neurologist conducted an exam called a nerve study, which involves stimulating parts of the skin with patches that send mild electrical impulses. The speed of the signal is calculated by measuring the time it takes for the zaps to travel between the electrodes on one hand; if they travel slower than expected, it means something is amiss. The test can help diagnose conditions such as Guillain-Barre syndrome, a rare autoimmune condition that damages the nerves and that has been associated with covid-19.
The study results were abnormal, Polega said, but “nothing that would explain the complete numbness.”
After her second infection, Polega heard about a new post-covid clinic opening up in her area. It was part of the Watson Clinic, one of the largest medical practices in Florida, and it invited patients “who might have been told previously that they were ‘just imagining’ their symptoms or instructed to ‘wait them out,’” the clinic’s website said.
For the first time, Polega said, she felt heard. She sent in the reams of medical information she’d accumulated over the past year — down to the clinical notes from puzzled doctors, noting how “very strange” and “complex” her case was, and how much “confusion” there was in her test results — and booked a televisit. Despite the enormous time and cost of her appointments and tests, which have mostly led nowhere, Polega has good health insurance that has covered most of these expenses. Many Americans have not been so lucky, especially if their illness has left them unable to work.
Early on, there was hope that by putting researchers and multiple specialists together in one program, they might more quickly pinpoint the cause of symptoms and be able to provide people with a pill or other simple treatment that would help. Over time, though, the thinking about covid evolved.
“We had to adjust to the new reality that these patients are chronically ill, and the answers will not be there today,” said Fernando Carnavali with Mount Sinai’s Center for Post-COVID Care in New York, which has seen more than 4,000 patients so far. “This is a very difficult and shocking concept to adapt to, especially for a previously healthy person.”
In Polega’s case, Kathleen Haggerty, an internal-medicine specialist who leads the Watson Clinic’s long-covid program, ordered wide-ranging lab tests, but almost everything came back fine. Haggerty said this pattern is typical of her more than 450 patients, “but that doesn’t mean there’s nothing wrong with you.”
Her main finding was endocrine dysfunction in what’s known as the autonomic nervous system, which primes people’s fight-or-flight response.
“It causes your eyes to dilate, your hair to stand on end, heart to beat faster, you breathe faster, shunts blood to muscles and heart instead of to [the] digestive system. It gets ready for you to do something. It makes you mentally very excited,” Haggerty explained. And being in that heightened state for a prolonged period of time can take a toll on the body.
The recommended treatment for Polega was the same as for many of Haggerty’s patients: rest, because more activity and exercise can ramp up that system even more.
The findings gave Polega a lot to think about.
In May, Polega graduated from law school and shortly thereafter got vaccinated. After hearing anecdotal stories about how some long-covid sufferers improved after their shots, she had hope that the worst was behind her.
Around Christmas, however, Polega’s boyfriend caught the virus at work — probably the omicron variant, given the timing — and she tested positive for the third time. Both had mild illnesses, but her long-covid symptoms flared severely once again, and she feared her life had become a cycle of illness and lingering symptoms.
On Dec. 31, 2021, New Year’s Eve, she sat down at her computer to type out a message to friends and family about the past year. She listed all the good things that had happened: She had passed the bar exam, and she and her boyfriend had gotten their dream jobs, brought home a new puppy, and “landscaped an incredible oasis to relax in, read all the books, and laid on the beach a lot.”
But she also talked about her journey with long covid. “We’re tired,” Polega wrote, explaining that by “we,” she meant “my young body that has somehow aged years in less than 2.”
“I’m sorry if this is uncomfortable to face. I’m sorry if you’d rather ignore what this virus can do, because it’s easy to. I know this,” she typed. “I want to forget too.”