For months, Andrea Tomasek suspected she was suffering from debilitating symptoms caused by a Covid-19 infection. She had a fever and her breathing was so labored that she said she felt “her lungs were sponges full of fluid.” She then experienced dizziness and periods when she fainted.
But when the 37-year-old began to feel ill in March 2020, the pandemic was only in its infancy, so she was unable to access a test in her hometown of Savage, Minnesota, a suburb of Minneapolis.
Without this initial diagnosis of Covid-19, doctors have repeatedly dismissed the link between its symptoms and the virus.
“It’s been a huge fight,” she said. “I was lit on gas. Doctors fired me outright and tried to prescribe anxiety medication. It was ridiculous.
It wasn’t until October, when her symptoms still hadn’t gone away, that she said a doctor made the connection between her illness and Covid, and referred her to the post-care clinic. -Covid of the Mayo Clinic.
But even with the referral, the clinic wouldn’t see her without a documented positive Covid test. Tomasek said another doctor eventually referred her to the Mayo Clinic. It was there that he was finally diagnosed with the post-acute sequelae of Covid-19 (PASC).
“It was a huge relief because no doctor will tell me I don’t have it when the Mayo Clinic diagnosed me with it,” she said. “I would love to see them try.
The post-acute sequelae of Covid-19, or long Covid, affect around 10 to 30% of people infected with the virus. Research indicates that it can last over a year and can be accompanied by over 200 possible symptoms, including extreme fatigue, brain fog, and shortness of breath, and affect 10 organ systems.
But for people like Tomasek, who fell ill at the start of the pandemic when Covid tests were not widely available or were not always accurate, or for those who could not access a doctor or a testing for financial or logistical reasons, seeking treatment can give the impression of being in medical limbo.
For these patients, it is probably too late for a Covid test to detect the initial infection. Antibodies, which can go away in a few months, can go away. But without the test, patients may face medical providers disregarding the possible link between symptoms and the virus, barriers to accessing treatment at long Covid clinics, and clearance challenges. insurance and disability benefits.
“They are often cataloged under specific diagnoses, such as depression or anxiety or fibromyalgia,” said Dr Greg Vanichkachorn, occupational medicine specialist and medical director of the Covid Activities Rehabilitation Program at the Mayo Clinic. “They go to these centers, but they are not qualified. And then they cannot seek treatment locally. So where are they going? They really don’t have anywhere to go.
Vanichkachorn, who described these patients as being in a sort of “catch-22” state, said he has seen up to 20 patients in this situation, and estimates that there are thousands more in the world. world.
The first Covid diagnostic test distributed by the CDC in the United States was released in February 2020. But Vanichkachorn said the tests were initially mainly reserved for people most at risk of the virus, and that there were problems with precision. It wasn’t until around April or May 2020 that large-scale testing became more available.
Farah Khemili, 43, who lives in Albany, New York, said that after experiencing chest tightness and excruciating nerve pain, she and her fiance were tested for Covid in April 2020. He tested positive, but she tested negative.
Between April and August, she went to the emergency room four times. In August, she saw a primary care doctor who tested her blood for Covid antibodies. But since the test did not reveal any, she said the doctor told her the symptoms were all in her head. Khemili said she tried to enter a long Covid clinic at the Mount Sinai Health System, but was told she needed a positive Covid test.
“I just thought of a multitude of things: I was dying; I was crazy; it was in my head. I mean, I really believed after six or seven months that it must be in my head. Even though I knew I wasn’t, because I wanted nothing more than to be healthy, ”said Khemili, who also experienced brain fog and lost his taste and smell.
Khemili estimated that she spent at least $ 30,000 on medical bills because she was forced to seek specialists who were not covered by her insurance.
Finally, in the spring and summer of this year, she was able to see two Covid specialists, one in California and the other in Florida, who both confirmed the link between her symptoms and Covid.
“It was magical,” she said. “I mean, I have no other word for it. I felt so validated.
Dr Aaron Bunnell, medical director of the Post-Covid Rehabilitation and Recovery Clinic at Harborview Medical Center and attending physician in the Department of Rehabilitation Medicine at the University of Washington, said a positive Covid test is not the only way to determine if patients are suffering from Covid. His clinic, which was one of the first of its kind to open, did not rely solely on testing.
“Our real way of making this diagnosis was, ‘Did you have clinical symptoms consistent with Covid and ongoing deficits? ” “, did he declare. “Is it possible that some of these patients never had Covid?” Yeah, absolutely. But I think the majority of those patients who, you know, really had the classic symptoms, probably had them, especially if they didn’t have access to this test.
Recently, Bunnell said, he had noticed fewer people coming to the clinic without this positive test result, since Covid testing has become so widely available. But it still happens from time to time. When long Covid patients arrive, with or without this test documentation, there is no comprehensive cure, so treatment involves a full patient assessment and rehabilitation strategies.
Angela Bridgewater, 47, who lives in Columbia, Missouri, said she woke up with an excruciating headache, difficulty breathing, and a burning pain down her legs in mid-March 2020. she went to the emergency room later in the month, she tested negative for the Covid.
Months later, still plagued with a host of debilitating symptoms, she met her primary care physician during a telehealth appointment and remembers telling her, “I understand this has no bearing. meaning for some doctors I’ve seen and even for you, but tell me what else?
She said it was a huge relief when her doctor finally said, “I have no idea. That’s the thing, so I’m gonna believe everything you say and that yes it is [Covid] because it can’t be anything else.
But Bridgewater is still trying to get documents to support her doctor’s diagnosis, and there are still plenty more looking for confirmation.
Tomasek, who spent months meeting with doctors and defending herself before getting a long diagnosis of Covid, said she felt compassion for those who weren’t so fortunate.
“I really feel like I entered through a back door,” she said. “And I feel like if people aren’t as stubborn as I am, and just as boring as I am, I’m like ‘no, that’s not right, I need some care, some something is wrong. ‘ So many people right now are falling through the cracks. “