Brain fog, pain, malaise, nausea, dizziness: Almost one-third of patients with “mild” COVID-19 are still fighting symptoms after months.

It’s been almost a year since 50-year-old Michael Reagan was infected with COVID-19.

Looking back on the morning of March 22, 2020, he said, “I woke up first thing in the morning, so it was very hot and I was out of breath.” “When I went to the bathroom to hold my breath, I immediately got blood. To the sink … I went to the hospital that day and tested positive for COVID.”

Reagan said he spent two months inside and outside the hospital with acute COVID-19 last spring.

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But even if it’s hard, what he’s experienced since then can be considered just as bad, if not bad. His current symptoms include constant chest pain, painful nerve pain in the limbs, seizures, tremors, and loss. Of the visual sense of one eye.

“Since then it has been a roller coaster,” he said, across ups and downs, new symptoms, a series of doctors, medications and tests.

“I noticed that the damage caused by COVID was so great that my life changed completely,” he said. He couldn’t return anything near the active life he had previously enjoyed.

Unlike Reagan, when 34-year-old Stephanie Kondra was infected with COVID-19 last summer, she didn’t have to be hospitalized. Her symptoms were relatively mild: malaise, shortness of breath, stomach pain and cramps, low-grade fever.

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However, after she appeared to have recovered from her acute illness, Condra says she began to develop a variety of health problems, including severe sinus pain, nausea and loss of appetite, and bone-crushing fatigue. Dizziness, burning sensation in the chest, dry cough, fog in the brain, confusion, problems with concentration, problems with word search.

“My symptoms are constantly evolving. The same symptoms occur over and over again. It’s like one symptom disappears before another symptom appears,” she explained.

Condra said it started to get better in early 2021, but she said her progress was slow and stopped. “I can actually only work with tops, like four hours a day,” she said.

More than a year after the pandemic occurred, SARS-CoV-2 (the virus that causes COVID-19) has become clear to be a tricky virus. Some people are completely unaware that they are infected, but others are hospitalized and some die. And an ever-growing group of people gets sick and never recovers completely. In support groups, they sometimes call themselves long-haul carriers. These conditions alternate with long COVID, continuous COVID, post-COVID syndrome, or acute post-COVID syndrome.

What we are learning

No one knows what percentage of people infected with SARS-CoV-2 will continue to develop post-COVID syndrome.

A new research letter published in the journal JAMA Network Open on Friday sheds new light on this situation. Researchers at the University of Washington have followed 177 people with SARS-CoV-2 infections identified in the laboratory for up to nine months. This is the longest follow-up ever. In particular, this group included 150 outpatients who were not hospitalized due to “mild” illness.

They found that 30% of respondents reported persistent symptoms. The most common were malaise and loss of smell and taste. Over 30% of respondents reported poor quality of life compared to before they became ill. In addition, 14 participants (8%) (including 9 who were not hospitalized) reported problems in performing at least one normal activity, such as daily chores.

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Researchers write that there are 57.8 million cases worldwide, “even the slightest outbreak of long-term weakness can have enormous health and economic implications.” According to the latest data compiled by Johns Hopkins University, there are currently more than 110 million cases worldwide.

Of the 1,733 coronavirus patients treated in Wuhan, China, 76% had at least one 6 months after the onset of symptoms, according to a much larger study published in Lancet in early January. I was experiencing one symptom. However, this group consisted entirely of inpatients.

Treatment is a long and winding road

The Post COVID Care Center at Mount Sinai Health System in New York City was the first type to open in May. So far, the center has seen more than 1,600 patients, including Reagan and Condra, and it can take up to a month to get an appointment.

“It’s very difficult to predict who will have these symptoms,” medical director Dr. Gizian Chen told me when I interviewed him last summer. “The patients we see at the center are of all races, as you know. Ages range from 20s to 70s and 80s. There are evenly distributed patients, both male and female. . “

He said that mild illness and health are not protection from persistent symptoms.

“If you have an existing condition, I presume that a viral infection can exacerbate that condition, but some patients were previously healthy and had a slightly milder illness. You can see it, “said Chen.

He said age is not a predictor either.

Another annoying aspect of post-COVID syndrome is the vast and seemingly random array of health problems faced by some patients.

Dr. Christian Sandrock is a professor of lung lifesaving and infectious disease medicine at the UC Davis School of Medicine in Sacramento, California. As Director of Critical Care, he is one of the physicians assessing patients at the Post COVID-19 Clinic at the University of California, Davis. It was the first center in the area to open its doors in October.

“Long-term symptoms … the big ones we see are fatigue, lethargy, and sleep disorders, which probably account for more than half of what we see. Taste and smell. Loss is very special, shortness of breath is very special, and so is chest pain, “he said. Many patients have multiple symptoms, which may appear or disappear.

Sandrock classifies symptoms into several buckets. Problems such as chest pain, shortness of breath, and heart inflammation fall into the cardiovascular category. Chest pain and shortness of breath can fall into the respiratory category, as well as impaired exercise tolerance and respiratory dysfunction, depending on the underlying cause. He puts rashes, hair loss, and even tooth loss in the dermatology category. Fatigue, fog in the brain, and not feeling like yourself belong to the Constitution. Neurological categories include odor and taste loss, sleep dysregulation, cognitive changes, and memory loss. Depression, anxiety, and mood swings all fall into the psychiatric category, he explained.

Sandrock has pointed out several causes of these symptoms. It may be due to complications of long-term hospitalization or staying in the ICU. This is known to be stressful and have lasting effects. Some can be caused by microvascular disease-capillary damage that Sandlock says is behind many symptoms, from chest pain to “COVID toes”, malaise, and even brain fog. Some symptoms can be caused by autoimmune reactions caused by high levels of inflammation, such as joint and body pain, sleep disorders, depression, and malaise. According to Sandrock, there is also the possibility of direct viral infections, such as loss of smell and taste.

According to Sandrock, treatment is very individualized and depends on the symptoms and the underlying cause of those symptoms.

“Treatment needs to be customized,” he said. “We have to spend time seeing what the patient really needs. Some of them really only have chest pain, shortness of breath, hypoxia, in which case You can manage it. Brain fog, poor concentration, sleep disorders-that’s a lot of other things we have to do next. “

It may include referrals, medications and rehabilitation to other specialists in the clinic. Drugs such as immunomodulators, anti-inflammatory agents, antidepressants, beta blockers and / or steroids, he said. Rehabilitation such as cognitive, lung and / or heart rehabilitation. Sleep research to eradicate the causes of sleep disorders.

But there is one constant. “The only consistent treatment I’ve seen is much of what we call supportive care. Therefore, because there is no better term, you need a better life and a better quality of life, but that’s you. It means that you really need sleep. Sleep is going on and it’s very important, “he said, stress relief, meditation, and yoga are also part of the mix.

He said he needed to adjust his life to a slower, less stressful pace so that the patient could heal. “So we want people to be really patient. Know that they take a lot of time to get it done. I think that’s the key,” he said.

Dr. Dana McCarthy, a team member at Mount Sinai’s Post-COVID Care Center, agrees that patients must adjust and slow down their own expectations.

“We’re like rubber bands. We just want to go back to the previous state. I think that’s one of the biggest challenges. But if you can’t do that, press, it’s when the symptoms don’t improve. “She said.

Improvements are painstakingly obtained and very slow. “It’s very difficult to measure these improvements every day. As these symptoms worsen and diminish, the improvements become very stuttering. As you know, we go three steps forward and two steps back.” Sandrock said he is measuring improvements on a monthly basis.

McCarthy, who calls this process “late in the ice age,” says patients get better with supportive care and time. “But much of it depends on the patient, and we must understand and agree with the fact that they need to change their lives in order to get better,” she said. “And when you’re young, healthy, and accustomed to some sort of 5th gear, you’re moving forward with all your might, but what we’re talking about right now is really shifting back. It means that you need to shift down. This is to give your body what it needs to recover and recover. It’s very difficult for patients to process and accept, “she said.

Further research is needed

Both Sandrock and McCarthy say more research is needed to better understand post-COVID syndrome, including who develops it and the best treatments. But, as McCarthy said, they are optimistic about the future as this situation is recognized and “science is lagging behind.”

“That is, people come together in both systems, then systems come together nationally and internationally, so there was this massive collaboration of scientists and medical professionals looking for answers. It will take some time, but I am very happy to report it. “

Sandrock said he was excited to learn that the National Institutes of Health recently announced that it would provide a research grant as part of the “Acute Sequelae of SARS-CoV-2 Infection (PASC)” initiative.

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When it comes to Michael Reagan and Stephanie Condra, they’re doing their best.

“Every day I make the conscious decision to be optimistic and positive. I don’t always have control over what life throws at me, but I can control how I hold it. With elegance and dignity. If you carry yourself, it’s okay. ” “I have a very supportive family. I have a supportive partner. I have a job (and) colleague who understands. I have a good doctor. So I Is trying to look at what he is grateful for. “

“I really had to give up my sense of control that I didn’t know when this would end, but I was really grateful for the improvements that were happening and at least regained some quality. Life and my mood Being able to take advantage of the days and weeks when it’s getting better … but it’s amazing how long it is. ”