For months, Andrea Tomasek suspected she was suffering from debilitating symptoms brought on by a Covid-19 infection. She had a fever and her breathing was so labored she said it felt like her “lungs were sponges full of fluid”. She later experienced dizziness and periods where she would pass out.
But when the 37-year-old first started to feel sick in March 2020, the pandemic was still in its early days, so she couldn’t access a test in her home city of Savage, Minnesota, a suburb of Minneapolis.
Without that initial Covid-19 diagnosis, physicians repeatedly discounted the connection between her symptoms and the virus.
“It has been a huge struggle," lei disse. “I’ve been gaslit. I’ve had doctors dismiss me outright and try and prescribe me anxiety medication. It’s been ridiculous.”
It wasn’t until October, when her symptoms still hadn’t let up, that she said a doctor made the connection between her illness and Covid, and referred her to the Mayo Clinic’s post-Covid care clinic.
But even with the referral, the clinic wouldn’t see her without a documented positive Covid test. Tomasek said a different doctor finally referred her to the Mayo Clinic. It was there that she was finally diagnosed with post-acute sequelae of Covid-19 (PASC).
“It was a huge relief because no doctor is going to tell me I don’t have it when the Mayo Clinic diagnosed me with it," lei disse. “I’d like to see them try.”
Post-acute sequelae of Covid-19, or long Covid, affects about 10% per 30% of people infected with the virus. Research indicates it can last more than a year and can come with more than 200 possible symptoms, including extreme fatigue, brain fog and shortness of breath, and affect 10 organ systems.
But for people like Tomasek, who got sick early in the pandemic when Covid tests weren’t widely available or weren’t always accurate, or for those who weren’t able to access a doctor or a test for financial or logistical reasons, seeking treatment can feel a lot like being in medical limbo.
For these patients, it’s probably too late for a Covid test to pick up the initial infection. Antibodies, which can disappear within a matter of months, may be gone. But without the test, patients can face medical providers who disregard the possible connection between the symptoms and the virus, barriers to accessing treatment at long Covid clinics and challenges when it comes to insurance authorizations and disability benefits.
“They often get pigeonholed into specific diagnoses, like depression or anxiety or fibromyalgia,” said Dr Greg Vanichkachorn, an occupational medicine specialist who is the medical director of the Covid activity rehabilitation program at the Mayo Clinic. “They go to these centers, but they don’t qualify there. And then they can’t get care locally. So where do they go? They really just don’t have anywhere to go.”
Vanichkachorn, who described these patients as being in a type of “catch-22”, said he had seen as many as 20 patients in this situation, and estimates there are thousands more worldwide.
The first Covid diagnosis test distributed by the CDC in the US was released in February 2020. But Vanichkachorn said tests at first were primarily reserved for those at greatest risk from the virus, and there were problems with accuracy. It wasn’t until around April or May 2020 that widespread testing became more available.
Farah Khemili, 43, who lives in Albany, New York, said after experiencing a tightness in her chest and excruciating nerve pain, she and her fiancé got 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 agosto, she saw a primary care doctor who tested her blood for Covid antibodies. But when the test didn’t show any, she said the doctor told her the symptoms were all in her head. Khemili said she tried to get into a long Covid clinic at the Mount Sinai Health System but was told she needed a positive Covid test.
“I just thought a multitude of things: I was dying; I was crazy; it was in my head. intendo, I really did believe after six or seven months that it had to be in my head. Although I knew it wasn’t, because I wanted nothing more than to be well,” said Khemili, who also experienced brain fog and lost her taste and smell.
Khemili estimated that she had spent at least $30,000 on medical expenses because she was forced to look for specialists who were not covered by her insurance.
Finalmente, 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 connection between her symptoms and Covid.
“It was magic," lei disse. "Voglio dire, I don’t have another word for it. I just felt so validated.”
Dr Aaron Bunnell, medical director of the post-Covid rehabilitation and recovery clinic at Harborview Medical Center and attending physician at the University of Washington’s rehabilitation medicine department, said a positive Covid test isn’t the only way to determine if patients are suffering from long Covid. His clinic, which was one of the first of its kind to open, hasn’t relied solely on the test.
“Our real way of making that diagnosis was, ‘Did you have clinical symptoms that were consistent with Covid and ongoing deficits?’” he said. “Is it possible that some of those patients never had Covid? Yeah, assolutamente. But I think that the majority of those patients who really, sai, had the classic symptoms, probably did, especially if they didn’t have access to that test.”
Recentemente, Bunnell said, he had noticed fewer people who come to the clinic without that positive test result, since Covid testing has become so widely available. But it does still happen occasionally. When long Covid patients come in, with or without that test documentation, there is no overarching cure, so treatment involves a comprehensive evaluation of the patient 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 along her legs in mid-March 2020. When she went to the emergency room later that month, she tested negative for Covid.
Mesi dopo, still plagued by an array of debilitating symptoms, she met with her primary care doctor during a telehealth appointment and remembers telling her, “I understand that this doesn’t make sense to some doctors I’ve seen and even you, but tell me what else is it?"
She said it was a huge relief when her doctor finally said, “I have no idea. That’s the thing, so I’m going to believe everything that you’re saying and that yes, it is [Covid] because it can’t be anything else.”
But Bridgewater is still trying to obtain documentation to support her doctor’s diagnosis, and there are still many others searching for confirmation.
Tomasek, who devoted months to meeting with doctors and advocating for herself before getting a long Covid diagnosis, said she feels for the many who haven’t been as lucky.
“I really feel like I got in a back door," lei disse. “And I feel like if people aren’t as tenacious as I am, and just as annoying as I am about like, ‘no, this isn’t right, I need care, something’s wrong.’ So many people right now are falling through the cracks.”