Lindsay Polega’s two-year odyssey with long-term COVID-19 shows how the medical system fails many patients.
(Jin Xia for The Washington Post)
Two years later, three covid seizures and 11 doctors later, no one seems to know why Lindsay Polega is still so ill.
She is only 28 years old and was the picture of health before her infections. Polega, who graduated from law school last year, now suffers from chest pain, hypertension, tingling in her hands and many other symptoms.
Her life turned into a series of medical encounters cruising the cities around her home in St. Petersburg, Florida: Her primary care physician referred her to an immunologist. The immunologist referred her to a cardiologist. The cardiologist sent her to a nephrologist and endocrinologist. The endocrinologist thought he could learn more from a neurologist. But when the neurologist’s tests failed to find a potential cause, Polega was sent back to the immunologist.
At one point, one of her doctors – confused by the inability of medical science to explain what was happening – advised her to consider isolation at home indefinitely, hoping that this could help her avoid the causes of the disease.
“I wonder, ‘Will this be the rest of my life?'” Polega said. “I can’t live in my room forever. This is not a good answer. This is not a cure. “
Polega’s demoralizing, two-year odyssey speaks to the dysfunction of the US-centered health care system when it comes to long-term covidity and the challenge of trying to treat an ill-defined disease for which there is no clear cause and no test. documented symptoms now extend to more than 200. Many of the country’s best medical centers have set up multidisciplinary long-distance treatment clinics, but advocates say there is almost no enough to deal with the expected millions of Americans. tackle the ongoing problems of covid-19 in the years to come, leaving most of them struggling to navigate the 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 between 10 and 30 percent could experience symptoms of long-term covid months after recovering from their original illness.
“The cohort of patients with long-term Covid will face a difficult and arduous experience with our multi-special, organ-focused healthcare system in light of complex and ambiguous clinical presentation,” said Stephen Phillips, vice president of science and strategy at Covid Collaborative. and Michelle Williams, dean of the Harvard TH Chan School of Public Health, wrote in a recent prospective article in the New England Journal of Medicine.
Christina Martin, an advanced nurse at the COVID-19 Long-Term Treatment Clinic at Dartmouth-Hitchcock Medical Center in New Hampshire – one of dozens of such centers nationwide – describes her work as 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’re “normal,” so they start to think they might still be crazy, “Martin said.” When the reality is that their conditions are so complicated, it’s hard for a specialist to see the full picture ”
Mystifying, contradictory
Lindsay Polega was part of the first wave of Americans infected with the coronavirus before the nation began closing on March 15, 2020 – before social distancing, before masks and before vaccines. She is statistically likely to survive the disease without any problems given her age, health and high level of fitness: running, swimming or attending some kind of fitness class every day.
However, the virus knocked her out for a month and a half, and she never returned to her old self.
Her chest pain was just one of many symptoms that appeared and sometimes disappeared, only to reappear over the next few months. Her blood pressure rose throughout the day, reaching 210/153 at one point – well above 120/70, considered normal.
Scrolling her phone causes dizziness, blurring and disorientation.
She became sensitive to light.
Sometimes she felt dizzy and had ringing in her ears.
She had excruciating joint pain.
And she swore she could smell fish, even when there was none. One day she tore up her car, looking for what she insisted was a forgotten and rotting fish taco, while her confused friend watched.
Post-infectious syndromes, first described in the 19th century, are among the most enigmatic and controversial areas of medical science, with generations of physicians dismissing symptoms as primarily psychological.
It was not until 2006 that the Centers for Disease Control and Prevention launched a public education campaign to raise awareness of such a condition – myalgic encephalomyelitis, better known as chronic fatigue syndrome, emphasizing that it is a “real disease” and that people with the condition needs “real medical help”. Researchers have also acknowledged the increased reporting of post-viral syndromes following the outbreak of SARS from late 2002 to 2003 and after people became ill with Epstein-Barr, Lyme and other pathogens.
Now with the long covid, which has many symptoms that overlap with those of chronic fatigue syndrome, research is finally beginning to develop. The National Institutes of Health last year launched a $ 1.15 billion initiative to better understand the long covid, which will include 40,000 adults and children.
How covid brain fog can overlap with “brain chemistry”, Alzheimer’s disease and chronic fatigue syndrome
One leading area of research is the study of possible dysfunction in the body’s autonomic nervous system, which controls unconscious functions such as respiration, heart rate and digestion.
Another theory is that the virus continues to hide in reservoirs in the body, creating inflammation that causes all sorts of symptoms. A third possibility is that the body’s immune system reacts excessively or incorrectly in these situations and attacks itself.
A report by the Government Accountability Office, released in March, estimates that up to 23 million Americans are affected by prolonged covid, with 1 million unemployed. This suggests that damage to organs by the virus and microcoagulation in blood vessels may also be linked. But while these ideas are reviving research, scientists say there is a long way to go before it can lead to interventions and treatments.
Patient researchers are partnering in long-term covid research
By the summer of 2020, Polega realized that he was not improving. She has been to the emergency room three times already for chest pain and fainting and began to insist on answers.
Polega worked as a lawyer during the day and as a part-time instructor in a kickboxing gym some evenings and weekends, as well as sitting on dogs, a calmer schedule than she had during the school year. But it was still too much. The hypertensive jumps began to intensify, which led to chest pain. Several times she had to leave work earlier. Colleagues and members of the gym, where she wore a heart monitor, commented on how high her heart rate would be with just a few minutes of activity.
Then her primary care physician referred her to an immunologist – the first stop of her stay from one specialist to another, a long-standing problem for patients with complex conditions such as cancer and chronic Lyme disease.
Polega’s doctor wondered if some of her symptoms might indicate rheumatoid arthritis or another condition in which the body’s immune system does not ignite and attack on its own. The possibility also made sense based on Polega’s medical history. She was allergic to peanuts, tree nuts, sesame and pollen, and recent research has suggested a potential link between allergens and the development of autoimmune disease.
In July 2020, the immunologist performed a number of blood tests, according to her medical records. The doctor ruled out lupus and other possible autoimmune conditions, but Polega did have increased markers of inflammation, which explains the joint pain.
Confused, the immunologist referred her to a cardiologist, whom she hoped might have more insight.
One of the biggest surprises for the coronavirus when it struck the United States was the discovery that the virus can directly attack the heart and blood vessels and cause countless conditions, some rare, some more common, including hardening of the heart walls, inflammation of the heart. sac-like tissue around the heart, clotting and stroke.
Five months after contracting the coronavirus, Nicole Murphy’s pulse went crazy.
Given Polega’s frequent and unusual chest pain and the severity of her high blood pressure, she received a complete diagnosis.
Her echocardiogram, a imaging test that looks at how the heart chambers and valves pump, was good. So was her treadmill test, which looked at how her heart worked under stress. Cardiac CT calcium examination, which helps assess the amount of calcified plaque in the heart, also returned without any worries.
The doctor prescribed medication for the heart – 25 milligrams of eplerenone, twice a day to lower her blood pressure. She warned Polega that she should not get pregnant with the drug, which is usually used after heart attacks, as it is associated with low birth weight babies.
Polega will later remember this moment as the worst of his ordeal. It was the first time she realized how her illness could change the trajectory of her life in ways she never imagined. She was not yet ready to have a baby, but she knew she wanted children and had recently bought a house with her longtime boyfriend. “I felt like something really big, scary, because I thought, ‘Well, if that doesn’t go away, will they be able to find a safe way to be …
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