A dilemma for ‘long-haulers’: Many can’t prove they ever had Covid-19

As the coronavirus pandemic rolls on, an unknown number of seemingly recovered patients are experiencing what is being called post-Covid syndrome — weeks or months of profound fatigue, fevers, problems with concentration and memory, dizzy spells, hair loss, and many other troubling symptoms. Among these “long-haulers,” as they have become known, a significant number face a very specific challenge: convincing others they had Covid-19 in the first place.

Because of widespread supply shortages and overwhelmed medical providers, many who sought viral testing in the first months of the pandemic were refused for not meeting strict criteria. Others decided on their own to self-quarantine. Some, like wildlife veterinarian Emily Talkington, received negative results from local testing sites despite clinical signs of the disease.

In late March, Talkington came down with what she assumed was Covid-19 and decided she could weather it out at home. Four weeks and two negative coronavirus tests later, she was still suffering from exhaustion, burning joint pain, tachycardia, and other symptoms.

Talkington, who lives near Santa Cruz, Calif., did not trust the negative results. She knew the tests could be unreliable if administered too long after the initial infection. In late April, she sought treatment at a temporary urgent care center after coughing up blood and almost collapsing from weakness.

A physician assistant dismissed her concerns once he learned she had tested negative for coronavirus and was not having breathing difficulties, recalled Talkington. He refused to refer her to a cardiologist for her racing heartbeat, gave her pamphlets on anxiety and perimenopause, and advised her to ignore social media posts about post-Covid syndrome, she said.

“He said, what you’re reading is giving you ideas,” said Talkington. “He also said it could be my hormones. I was mortified and humiliated. He didn’t believe me. It was awful.”

Finally, after contacting a Stanford Blood Center program seeking donations of plasma from recovered patients, Talkington took an antibody test — and it was positive, indicating that she had previously been infected with the coronavirus. “It was very emotional to finally have validation, I sat down and cried for an hour,” said Talkington. The positive antibody test also cleared the way for her to get a cardiology referral, she said.

Talkington’s dilemma is being replicated all across the country. Although tests for antibodies — which show evidence of an immune response to the infection after the fact — are now widely available, they are known to be of varying accuracy. Negative antibody tests, like negative viral tests, are not considered conclusive.

Some people who believe they had Covid-19 might instead have had a cold or the flu or some other illness, but even patients who had positive tests showing they had active coronavirus infections report skepticism from doctors about their chronic symptoms. Those without such laboratory confirmation can face much greater obstacles, said Daniel Griffin, chief of infectious diseases at ProHealth Care, a medical system with multiple facilities in and near New York City. These patients routinely report difficulty finding a doctor who takes their complaints seriously, he said.

“By the time they reach me, they’ve been told their story is not believable,” said Griffin. “They might have lost half their hair and can’t go up a flight of stairs, but if they don’t have proof of Covid, a lot of providers don’t want to deal with them or will refer them to a psychiatrist.”

Given the situation in the early months, said Griffin, patients who did not require hospitalization were often clinically diagnosed based on reported symptoms and exposures to known or possible cases. It was not clear at the time how important it would be to have that viral test documentation later on, he said.

In May, a patient-led research team associated with the Body Politic Covid-19 online support group released a survey of 640 people experiencing lingering symptoms. Only 23% had received a positive coronavirus test, almost half had not been tested at all, and 28% had tested negative.

It is too early to know how many people will ultimately have post-Covid symptoms that last for longer than a few months, whether or not they have evidence of infection. But this much is clear: Many or most people who were infected haven’t been tested. The Centers for Disease Control and Prevention recently estimated that 30 million to 60 million Americans have likely already been infected with the coronavirus, compared to the 5.7 million that have tested positive. Patients with mild as well as severe cases of Covid-19 have experienced these persistent complaints.

Anthony Komaroff, a professor of medicine at Harvard Medical School and a clinical epidemiologist, cites the country’s bungled pandemic response as a major reason why so many people without a positive viral test could have post-Covid syndrome. “I see it as part of the much larger problem of totally inadequate testing for Covid,” he said.

Early misconceptions about the disease also played a role. Komaroff said many doctors, himself included, assumed every Covid-19 patient would experience fever and pulmonary symptoms. As a result, he said, patients with mainly neurological symptoms and other atypical presentations were not thought to have the illness and were not generally tested.

Tasha Crabtree, a veterinary technician in Las Vegas, had a bout of diarrhea, a mild sore throat, and an intermittent cough in mid-March. She didn’t think much of it or associate it with Covid-19 until she woke up a week later gasping for breath. By the time she was able to obtain a viral test, it was almost a month after her initial symptoms — and it was negative. An antibody test was also negative.

Crabtree has continued to experience frequent heart-pounding, intense sweating, and other symptoms. Although she is “200% sure” she had Covid-19, she acknowledged harboring a bit of “positive-test envy” toward fellow patients. Not having that proof of viral infection to offer skeptical clinicians takes an emotional toll, she said.

“You’re made to feel like you’re crazy,” she said. “You start to think, you know what? Maybe I am crazy, am I making this up?”

Mady Hornig, a Columbia University epidemiologist and psychiatrist who is herself pursuing research into post-Covid phenomena, had a cough, almost two weeks of fever, and other symptoms in April. Four months later, she can work for only a few hours a day, not 10 or 12 as in the past, and is frequently short of breath.

Because she had negative viral and antibody tests, some of her own longtime health care providers questioned whether she could have had Covid-19.

“If one of my doctors could suggest to me that this post-Covid tachycardia likely reflects some deep-seated unconscious neurosis, then how will anyone without a medical background manage to be properly heard and guided through this?” she said. After much discussion, she added, her clinicians have come around and now agree that coronavirus is the best explanation.