Denied treatment, some Covid long-haulers could become lifelong-haulers

“Long-haulers are truckers who are on the road for a long time. But in the end they reach a destination, deliver their shipment, and go home. For me, there’s no end.”

That’s how my husband, Michael, feels about his 10 months as a long-hauler — the term coined for people with long-lasting responses to infection with SARS-CoV-2, the virus that causes Covid-19.

For most long-haulers, the illness is neither fatal nor curable. Their symptoms, like Michael’s, can resemble chronic fatigue syndrome or myalgic encephalomyelitis with crushing exhaustion, migraines, disrupted sleep patterns, and pain. Others have lung scarring or heart damage.

Originally written off by the medical community, doctors now recognize it with a variety of terms, such as post-acute Covid, chronic Covid, long Covid, or post-Covid syndrome. Long-haulers are more descriptive in their labels. I’ve heard it referred to as “a Dementor sucking my soul,” “living death,” and “an internal prison.”

Within this growing community is a particularly ill-fated subset: long-haulers who had Covid-19 in early March and, because testing wasn’t available at the time, weren’t able to promptly get tested for Covid-19 or antibodies. Without positive confirmation, they aren’t eligible for treatment at clinics such as Mount Sinai’s Center for Post-Covid Care.

A phone conversation I had with a representative at that center broke my heart. Near tears, I emphasized that my husband is not alone in being denied this specialized treatment and was told, “I know. If we could, we’d accept everyone.”

The Maimonides Medical Center’s Post-Covid Care Center also rejected him for the same reason.

I was told that for every 10 people who call, only three are considered “true patients.” Long-haulers without positive test results are also being denied experimental drugs that are just starting to become available.

I understand the need to obtain accurate data as scientists chart this novel virus, but why not treat unverified cases separately, leaving them out of the studies? Where are they to go?

Michael’s story is like that of so many other long-haulers, especially those from New York, which was hard hit in March and April of 2020. He’s in his early 40s and was in excellent health. He regularly went to the gym and bicycled to work every day. He did total body workout programs like Insanity and P90X.

His first symptoms arrived on March 4: dizziness, nausea, chills, and a general sense that something was wrong. An initial visit to CityMD followed but, since there was a shortage of tests and he did not have a fever or cough — he never developed those benchmark symptoms — he was denied a Covid-19 test, prescribed a course of antibiotics, and sent home. In a subsequent visit he was told he likely had a cold and some anxiety and was offered an antidepressant, which he declined.

On March 23, after removing a new printer from its box, Michael’s breathing became so labored that he called an ambulance. I rushed home from a friend’s empty apartment where I had been teaching yoga virtually. It was around 9 p.m. and our daughter was already asleep. Leaning on me for support and shaking with chills, we said the sort of goodbye you say when you do not expect to see your partner ever again. I felt that otherworldly calm that you feel when you disassociate because you are in shock.

After the ambulance left for NewYork-Presbyterian Brooklyn Methodist Hospital, I went inside, thankful that the sirens hadn’t woken my daughter. In a daze I cleaned up the boxes and Styrofoam from the printer, called my mother, Michael’s mother, my sister who is a doctor in Boston, and I waited. He received oxygen in the ambulance and, by the time they arrived at the hospital, his breathing and heart rate were stable. He was not admitted, but sent home.

I was both relieved and disconcerted.

Despite his trip to the hospital, without a fever or cough Michael was still ineligible for Covid-19 testing. In early May he had blood tests, a CT scan, and a chest X-ray, all of which came back normal. We were both baffled and crushed when his PCR and antibody tests both came back negative. We now know that both diagnostic tests and antibody tests can yield false negative results if performed too early or too late in the course of illness.

As Michael’s condition worsened, he became bedridden and other symptoms appeared: shortness of breath, chest pain, fatigue, body aches, vomiting, loss of appetite, headaches, and insomnia. As the weeks rolled on, I cared for him and tried to shield my daughter from the severity of his illness while we both managed her remote learning.

At the end of the day, when my husband and daughter were both asleep, I would collapse on the couch and text a friend who is a nurse practitioner. She counseled me through the most gnarly weeks when his health was touch-and-go. “It may wax and wane for weeks,” she warned me.

But “wax and wane” implies a rhythmic pattern of decline and recovery. We all expected eventual recovery — hopefully one month, but maybe two or even five months. Instead, he’s been battling with erratic ups and downs for 10 months and we’ve had to fend for ourselves, patching together help as a carousel of symptoms come and go.

Post-Covid syndrome, strangely, can prey on individuals who were previously healthy and in their 30s and 40s. In a recent survey by an international team of researchers, among the 3,762 respondents from 56 countries, 33.7% were 40 to 49 years old and 26.1% were 30 to 39 years old. The syndrome is particularly difficult to describe because it shape-shifts, moving through the body seemingly at random to affect various organs. One symptom might mysteriously resolve only to make way for a new one — or several.

Case in point: In the spring and summer, Michael suffered from costochondritis, a sharp chest pain, but in the fall and winter that had resolved, only to be replaced by daily debilitating nausea and migraines. Tracking the path of his illness as it migrates from his respiratory system to his digestive system to his neurological system and beyond has been alarming and exhausting.

Other signs and symptoms have been constant throughout the 10 months, though they ebb and flow in severity day by day. Like myalgic encephalomyelitis or chronic fatigue syndrome, post-Covid syndrome is a disease that baffles most doctors.

What Michael and so many other long-haulers need is the attention of a dedicated team of clinicians who have been studying the effects of Covid-19 on long-haulers and can treat their disease holistically. We’ve enlisted specialists who attend to his symptoms individually, but as one neurologist said, “We can treat the symptoms but not the syndrome.” His clinicians are not collaborating and lack the most up-to-date information of a post-Covid-19 research center.

In fact, medical professionals, including NIH Director Francis Collins, are relying on long-haulers to contribute their own findings, an ingenious way to crowdsource the condition that reveals how little is collectively known about it.

Although seven doctors have diagnosed Michael with Covid-19, without positive Covid-19 test results he falls between the cracks of eligibility for many post-Covid care centers and experimental drug trials. Instead, he’s consulted more than a dozen specialists, including pulmonologists, neurologists, gastroenterologists, CFS/ME, and migraine specialists — all in our insurance plan, with hours spent contesting medical bills. Since traditional Western medicine hasn’t provided a cure, he’s tried acupuncture and imbibed Chinese herbs. He is currently seeing a Western herbalist, a nutritionist, and a physical therapist.

His care is piecemeal. His health care providers want to help, but don’t have a unified answer.

We know full well that we are among the fortunate and privileged. We have health insurance, financial resources, access to doctors, and the time and education to advocate for Michael’s medical treatment. That leaves us to wonder how long-haulers without similar resources possibly manage.

People without the resources that we have should not be abandoned to suffer “living death” because the U.S.’s Covid-19 testing system failed them early in the pandemic.

A first step toward addressing that failure would be for post-Covid care centers nationwide to accept long-haulers for treatment who have received positive diagnoses from doctors even if they haven’t tested positive for Covid-19 or antibodies against it. In time, every city or county should have a post-Covid clinic open to anyone whose illness fits the Covid-19 timeline and who suffers from symptoms identified with long Covid-19.

It is the responsibility of our government to redress the failure of inadequate testing and misdiagnosis, which continues to affect the health and lives of so many citizens.

Otherwise, we ought to start calling people like my husband lifelong-haulers, since there’s no destination in sight.

Shayna Skarf is a yoga teacher based in Brooklyn, N.Y.