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.

advertisement

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.

advertisement

“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.

  • Corona Virus has been documented as having a wide variety of characteristics, yet there seems to be one test for having the disease or antibodies. This disease, like cancers, can produce or mimic other diseases, or possibly set off afflictions we are susceptible to. There have never been quIck solutions or cures to diseases and it’s unreasonable to claim so now. Doctors, also, have been trained to assume the easiest diagnosis for symptoms and that patients are clueless. I encourage a thorough study of symptoms of people suffering ongoing, due to corona virus. Stand by how you feel, people as you will have to fight your doctors and the system to be heard. It happens all the time long before this pandemic and far into the future.

  • I believe I have COVID…but like the people in this article, I too have been dismissed by healthcare professionals.
    Back in May I was diagnosed with and Upper Respiratory illness given a z-pack with 7 day steroids and sent home. I was not tested on this day.

    Months later, and many ER visits later, I still have difficulty breathing, dizziness, muscles aches, difficulty concentrating. I have also had a runny nose and diarrhea.

    I have had Covid tests since my first Er visit, and all have come back negative. I cry all the time, have no energy, and my nerves are shot.
    Several doctors have brushed me off and focused on my anxiety. It has been a humiliating experience and I am both emotionally and physically exhausted.

    I don’t know how much longer I can take. I have begged for help. It does give me some comfort to know there are others out there just like me. I however, feel I have no where to turn and every day feels like a battle to survive.

  • Anxiety can cause real and debilitating physiological symptoms that can mirror covid or other viral symptoms. With so few of the long haulers having negative test results for covid, one can deduce that for the vast majority of these suffering people that the real culprit is Anxiety. Anxiety is made worse by the way because of lockdowns and the mediq harping on covid as an apocalyptic disease. I would strongly suggest these folks in addition to seeking medical help, to seek therapy as well to see if this indeed is the issue behind their sickness. Good luck everyone.

    • What do the three patients in the article have in common? They are women. I wonder if male long-haulers are dismissed as just being anxious? Or hormonal. Their symptoms need to be taken seriously.

    • I am not an expert.What I do know is that these long haulers,do indeed have Covid 19.Medicine is not yet sophisticated enough to address their complicated issues.Looks like a duck,walks like a duck,….

    • Are you kidding me? Did we just read the same article and comments? In fact, as opposed to what you have just said, MANY are having a NEGATIVE result not few! And you are repeating the issue and proving the point of the treatment of women. You start with a lie as if it’s the truth then gaslight more? Sounds familiar.

      Do you even understand anxiety and panic attacks? If you did, you would know, at minimum, that the “shortness of breath” (difficulty catching your breath which is different) lasts about 30+ minutes, the length of the panic attack, not months! I can’t believe after reading these heartbreaking stories you respond with more denial.

      Have you had covid and are you having what is seeming to be and fearing to be life changes? I can’t believe your insensitivity. I hope you aren’t a medical person. Have you read about covid more than this article? You have not only diss-ed the authors but the commenters as well. I can not believe someone could write this after reading these stories. Unbelievable.

      If you are not tested at the right moment, it’s either too early or too late, and you will test negative. It’s well documented that even the antibody tests, are wildly inaccurate.

      I’m about to start 7 days of Prednisone in an attempt to stop a horrible flare of CRPS/RSD, an autoimmune pain condition I believe is badly reacting to the further rise of inflammatory Cytokine in my system. I could go from walking to never walking again as the disease is spreading now as it’s known to do. My fear is real and possible. Are you that insensitive? Please follow this trail people who are still affected. We need more people investigating the long term effects of a smaller, non-fatal “Cytokine storm” which affects your autoimmune system and in our cases, not treated when it occurs. Be well all.

      Maybe I shouldn’t feel so appalled. Just a further example of the exact point.

  • This story is a testament to the US being saddled with lousy sub-standard tests (one of Trump-induced failed quick-fixes), a health system that fails to learn fast about the wide scale of Covid symptoms, and seemingly also just ignorant medical practitioners. In other countries, every single person can get tested (regardless of symptoms). America clearly is not in that realm of top-notch truly advanced nations.

Comments are closed.

Sign up to receive a free weekly opinions recap from our community of experts.
Privacy Policy