Becky Letts and her 12-year-old son, Alex, have both had long COVID since early 2020. While the debilitating disease drastically reduced the quality of life for both of them, Becky said multiple reinfections led to new and worse symptoms. So far, she has had six confirmed COVID infections, while Alex has had five.

Following her first reinfection in September 2021, Becky said she developed severe irritable bowel syndrome (IBS), while a reinfection in January 2022 led her to develop facial tics. A third in June 2022 triggered a chronic migraine condition she still hasn’t figured out, as well as more severe POTS symptoms that have caused her to faint. All of these infections “have been on a scale from awful to life-and-death scary during the acute infection,” she told me. “But the worst part is what comes after them.”

Reinfections, rightfully, are feared by people with long COVID, infection-associated chronic conditions (IACCs), and other disabilities. According to The Economist, global excess deaths show that COVID-19 has killed around 28.5 million people worldwide and more than 5,000 people in the U.S. have died of long COVID, though that estimate is likely an undercount. It shouldn’t have to be difficult to avoid reinfection, but our society has made it difficult, as there are few mitigations to prevent the spread of SARS-CoV-2, not even in healthcare settings or hospitals. As the JN.1 wave — possibly the second largest of the entire pandemic — continues to wash over the country, many people who have been living with long COVID have been pushed into the lion’s den yet again.

I’m one of them. I recently experienced my second reinfection — and it left me testing positive for over 20 days, increased the severity of my symptoms, and brought new ones. The reinfection also led my baseline, or where a person places themselves on the broad spectrum of their health, to plummet. With chronic illness, baselines are influenced by numerous factors and always evolving, but are a marker to help track the change of advancing or declining health and quality of life.

It’s been deja vu, as my first reinfection during the Omicron wave set me back years after making significant improvements since becoming disabled in early 2020 from my first COVID-19 infection. In the fifth year of the pandemic, we still have little data or research about the impact of reinfections on people with long COVID (and people without long COVID), which has led to a complete lack of clinical guidance about treating reinfections. 

Attempting to recover or improve your quality of life with long COVID or other IACCs today is a Sisyphean effort. Our governments, public health organizations, and leaders have condemned us to an underworld (a wayside?) where we push the boulder of our recovery up a mountain, only to be reinfected and watch it tumble back down. But unlike Sisyphus who makes it to the top of the mountain each time, each infection prevents us from ever seeing the summit view again. Our next efforts only bring us half the way, a quarter of the way, a few yards. Some have been trapped beneath the boulder since their very first infection.

As I isolated from my partner and searched for information on what to do once reinfected, I couldn’t find anything. There’s currently “no protocol” for reinfections, said Todd Davenport, a physiotherapist and researcher who works with people with long COVID. “I received zero support from my medical providers,” Sita Zarcufsky, who was reinfected while advocating for long COVID research at the Senate HELP committee hearing on long COVID in Washington D.C. last month, told me. 

Senator Bernie Sanders, who led the hearing, mentioned the risk of reinfection in his opening remarks and in a later op-ed: “…although you may not have [long COVID] after your first infection, each reinfection can increase the risk of developing it. This escalating danger, particularly for those who have suffered repeated infections, poses a severe threat to public health that demands our immediate and focused attention.”

Over fifty people emailed me to tell their stories when I put out a call for experiences with reinfection, while dozens more reached out on social media. I also spoke with numerous people with long COVID I knew personally who were recently reinfected. Through my reporting, I was not able to find any anecdotes of people getting better after reinfection, though I did find stories of reinfections passing without affecting people’s baselines long-term. But the anecdotes, along with surveys and clinical research, show a common trajectory: reinfections largely disrupt our baselines and often trigger new symptoms and conditions, whether we have long COVID or not.

“The studies in the USA and Netherlands each show an increased risk of persistent symptoms with reinfection,” immunologist and The Long Covid Handbook co-author Danny Altmann wrote in a recent review article on long COVID. While scientists haven’t yet thoroughly studied the effects of reinfection in people who already have long COVID, said immunologist and researcher Ziyad Al-Aly, who authored one of those studies, he’s observed reinfection produce worse outcomes in his clinical experience.

“I don’t know why [public health communicators] seem to be oblivious to the fact, but reinfection is definitely not a good thing,” he told me. “Reinfection certainly contributes to both the risk of long COVID in people who don’t already have it and can make pre-existing long COVID symptoms worse. Or, it can result in new symptoms you’ve never had before.”

Research from Al-Aly and his colleagues at the Veterans Affairs healthcare system found that the risk of long COVID increases with each reinfection and that each COVID infection can lead to worse health outcomes. A recent Statistics Canada study also found that people reporting two known or suspected COVID-19 infections were 1.7 times more likely to report prolonged symptoms than those reporting only one known or suspected infection, while those with three or more infections were 2.6 times more likely. 

“What does it take to flip the switch?” asked Leticia Soares, a researcher at the Patient-Led Research Collaborative who is currently leading a survey study about reinfections that has gathered over 4,000 participants. “Our main goal is to look into how reinfections affect the overall health with the focus on long COVID and long COVID symptoms,” she told on a video call, noting that the study will be published later this year. Like many who live with long COVID, Soares got worse after a reinfection. It brought on new symptoms like internal tremors and sleep disturbances that have decreased her quality of life.

In the future, researchers like Al-Aly and people with long COVID want to see more studies on reinfection in long COVID, as well as how COVID-19 and long COVID impact the immune system. Some research indicates that SARS-CoV-2’s behavior in the body may make people more prone to getting reinfected with this and other pathogens. A recent study in Nature Immunology found that there may be T-cell exhaustion and low-level viral persistence in people with long COVID, which could lead to immune dysregulation.

One of the few studies on reinfections in people who already have long COVID is a  2022 patient-led survey from the U.K. of nearly 600 participants, including over 100 children. The survey found that 80% of people with long COVID saw their symptoms worsen after reinfection. A minority saw improvements in some symptoms after infection, but 85% of participants experienced a return of prior symptoms. The survey showed a mix of results in the severity of acute infections with 40% reporting the same severity as the first and 28% reporting more severe symptoms. 

“All my infections were pretty mild,” said Italian designer Giorgia Lupi, who presented her data and experience with long COVID in a recent New York Times essay.  “It’s a couple weeks after where problems start for me,” she told me. Lupi’s first reinfection brought on excruciating “burning and stabbing” pain in her left arm and right hip. “But it was my second reinfection that disabled me,” she said.

In the weeks following that reinfection, she developed postural orthostatic tachycardia syndrome (POTS), post-exertional malaise (PEM), and mast cell activation syndrome (MCAS), common in many people with long COVID and ME. 

In the 2022 U.K. survey, around 40% of participants reported they developed new symptoms following reinfection. Becky Letts told me that her son Alex’s second reinfection in January 2022 turned their entire family’s life “upside down,” as her son developed new diagnoses including pediatric acute-onset neuropsychiatric syndrome (PANS/PANDAS). PANS is an inflammatory brain disorder in children that can follow in the wake of many infections, including COVID-19. It can cause extreme mood and behavioral changes, obsessive compulsive disorder (OCD), tics, food restrictions, sleep disturbances, and more. 

Letts described PANS as a nightmare.“It’s a painful thing,” she told me, “It changes your child’s whole personality when they are in flares [of it.] They can have severe spells of rage. They can talk about wanting to die or kill themselves.”

One day, when Letts took her son to get an MRI, he had a PANS flare that she said made him irrational and dangerous. “I was the only one willing to get close to him,” she said. It took over 45 minutes to get him safely out of the medical facility into the car. “It was just me,” she told me, “And I’m sick [with long COVID], too. ​​It just makes everything so hard.”

Letts wants more education on long COVID in children, especially about PANS and other conditions and syndromes that can arise following COVID-19 infections and reinfections. A new Pediatrics review on long COVID in kids found an estimated 5.8 million live with the disease in the United States alone, though, some advocates say it’s a significant undercount. “Avoid [reinfections] at all cost,” Letts said. “If you can’t, please pay attention not only during the infection, but in the weeks and months after for any changes in your child’s behavior or functioning.”

Although reinfections continue to be common, there is little guidance on what people with long COVID are supposed to do once they are reinfected. Sita Zarcufsky said that once she found out she was reinfected after returning from Washington D.C. for the HELP hearing, she called her provider to request Paxlovid and metformin, since some studies have shown these may lower the risk of long COVID and are commonly used within the community following infection and reinfection. 

“I was told by the operator I didn’t meet the criteria for Paxlovid despite living with long COVID for two and half years and having acquired a lengthy list of diagnoses from my first infection,” she said. Others have had trouble accessing the antiviral and it isn’t always affordable. A recent study in the Journal of Medical Virology showed it may not be as effective in preventing long COVID at all.

Like Zarcufsky, Dana Brown wasn’t offered anything when she was reinfected with COVID-19. “We don’t really have any tools at this point,” she emphasized to me. Brown has had ME for 23 years and has noticed how some infections, like H1N1 during the winter of 2009-2010, set her baseline back significantly. She’s seen the same pattern in the ME community throughout the decades with numerous kinds of infections. Brown feared her first infection with COVID-19, but when it happened, she regained her baseline after a month. It was her second infection in September 2023 that disabled her further. 

“I felt like the crappy baseline I had before COVID wasn’t the way I wanted to live my life, but I had come to terms with it,” she told me about living with ME. “It was damn hard when COVID took it all away,” she said. Her second infection triggered MCAS and new psychiatric symptoms that made her suicidal for a month, in addition to severe severe abdominal pain, migraines, and increased fatigue. More than six months later, she’s still far from her pre-infection baseline.

As a physiotherapist and researcher who works with people with long COVID, ME, and other illnesses, Todd Davenport says that the responses he’s seen to reinfection are extremely variable. In people with ME, he says he’s observed a lowering of functional baseline and that in some people it can be a long-term lowering. “They might have been mild to moderate and gone into severe,” he said.  “And my severe folks, they may go very severe.” 

There is an obvious rationale for preventing reinfections, Davenport told me, pointing to evidence that people with long COVID may be immunocompromised and may have difficulty clearing viruses. “Why introduce more virus?” he asked.

To address reinfections, he said, medical providers need to be trained so that a properly staffed workforce can respond to the needs of people who already have long COVID upon their reinfections. “We’re having a hard enough time keeping those services that we brought online to help people with long COVID in business in the first place,” he said, noting the closures of some long COVID clinics.

As we wait on protocols for reinfections, Davenport encourages people to “listen to their bodies, even if it’s telling you things you don’t want to hear.” He recommends going back to the basics by spending time resting, pacing, lying flat to optimize blood flow, as well as staying hydrated with electrolytes. 

“We don’t know what new-onset signs and symptoms are part of the new reality of reinfection and we don’t know if the magnification of existing symptoms is ongoing,” Davenport said. “Give yourself the time you need to get to know your new functional baseline,” which could require adjusting your balance between activities and rest. This adjustment “may take months,” he said.

Al-Aly agreed, advising people dealing with reinfection to rest thoroughly and not push through. He also hopes that leaders will contain the spread of COVID-19 with clean air, masking, and increased vaccination efforts. “The best way to avoid reinfection and long COVID is to avoid COVID-19 in the first place,” he said.  Measures like masks and vaccinations help to reduce one’s risk, he added, “But no one layer is going to be 100% effective.”

When reinfected, it’s important to not beat yourself up, Davenport told me. “Remember that this wasn’t your fault,” he said. “This is the direction our society has chosen to go.”

This article was published by The Sick Times, a new website chronicling the long COVID crisis, on February 13, 2024. It is republished with permission.