The New York Times
They had smooth Covid. Then, his severe symptoms appeared.
In the fall, after Samar Khan contracted a mild case of COVID-19, she hoped to recover and return to her previous Chicago energy life. After all, she was only 25 and healthy. But weeks later, she said, “this strange constellation of symptoms has started to set in.” She had blurred vision surrounded by strange halos. She had ringing in her ears and everything started to smell like cigarette or Lysol. One leg started to tingle and his hands were shaking as he passed the eyeliner. Subscribe to the New York Times newsletter The Morning. She also developed “a really intense brain fog,” she said. Trying to focus on a job application in financial services, she felt like she had just come out of anesthesia. And during a policy debate with her husband, Zayd Hayani, “I didn’t remember what I was trying to say or what my stance was,” she said. Later in the year, Khan was referred to a special clinic for COVID-related neurological symptoms at Northwestern Memorial Hospital in Chicago, which has evaluated and counseled hundreds of people across the country who are experiencing similar problems. Now, the clinic, which serves about 60 new patients per month, in person and via telemedicine, has published the first study focused on long-term neurological symptoms in people who have never been physically sick enough of COVID-19 to need hospitalization, including Khan. The study of 100 patients from 21 states, published on Tuesday in The Annals of Clinical and Translational Neurology, found that 85% of them experienced four or more neurological problems, such as brain fog, headaches, tingling, muscle pain and dizziness . “We are seeing people who are really highly functional individuals, used to multitasking all the time and being on top of their game, but suddenly, it is really a struggle for them,” said Dr. Igor J. Koralnik, the boss Northwestern Medicine’s neuro-infectious diseases and global neurology, which oversees the clinic and is the study’s senior author. The report, in which the patient’s average age was 43, underscores the emerging understanding that, for many people, long COVID can be worse than their initial attacks with the infection, with a series of complex and stubborn symptoms. This month, a study looking at electronic medical records in California found that nearly a third of people struggling with prolonged symptoms of COVID – such as shortness of breath, coughing and abdominal pain – showed no signs of illness in the first 10 days after testing positive for coronavirus. Research by patient-led groups has also found that many COVID survivors with long-term symptoms have never been hospitalized due to the disease. In the Northwestern study, many symptoms experienced that fluctuated or persisted for months. Most have improved over time, but there has been a great deal of variation. “Some people after two months are 95% recovered, while some people after nine months are only 10% recovered,” said Koralnik. Five months after contracting the virus, estimated the patients, they felt on average only 64% recovered. Across the country, doctors who are treating people with post-COVID neurological symptoms say the study’s findings reflect what they have seen. “We need to take this seriously,” said Dr. Kathleen Bell, chairman of the department of physical medicine and rehabilitation at University Texas Southwestern Medical Center, who was not involved in the new study. “We can let people get worse and the situation gets more complicated or we can really realize that we have a crisis.” Bell and Koralnik said that many of the symptoms resemble those of people who have suffered concussions or traumatic brain injuries or who have had mental confusion after chemotherapy. In the case of COVID, Bell said, experts believe that the symptoms are caused by “an inflammatory reaction to the virus” that can affect the brain as well as the rest of the body. And it makes sense that some people experience multiple neurological symptoms simultaneously or in groups, said Bell, because “there is a limit of space in the brain and there is a lot of overlap” in regions responsible for different brain functions. “If you have inflammation disorders,” she said, “it may well have cognitive effects and things like emotional effects. It is very difficult to have a neurological problem without having several. ”Dr. Allison P. Navis, a specialist in neuro-infectious diseases at Mount Sinai Health System in New York City, who was not involved in the study, said that about 75% of her 200 post-COVID patients had problems such as“ depression, anxiety, irritability or some symptoms of mood. ”Study participants were predominantly white and 70% were women. Navis and others said the lack of diversity probably reflects the demographics of people able to seek care relatively early in the pandemic, rather than the full spectrum of people affected by post-COVID neurological symptoms. “Especially in New York City, the majority of patients who fell ill with COVID are people of color and patients with Medicaid, and these are not the patients who are seen at the post-COVID center at all,” said Navis. “Most patients are white, they often have private insurance, and I think we need to find out a little more about what is happening with these disparities – whether it is purely just a lack of access or whether symptoms are being dispensed with. colored people or if it’s something else. ”In the Northwestern study, Koralnik said that because the coronavirus test was difficult to obtain at the beginning of the pandemic, only half of the participants had tested positive for the coronavirus, but all had the initial physical symptoms of COVID-19. The study found very little difference between those who tested positive and those who did not. Koralnik said that those with a negative test tend to contact the clinic about a month later in the course of the disease than those with a positive test, possibly because some have spent weeks being evaluated or trying to have their problems treated by other doctors. Khan was among the participants who tested negative for the virus, but she said she later tested positive for antibodies to the coronavirus, proof that she had been infected. Another study participant, Eddie Palacios, 50, a commercial real estate agent who lives in Naperville, a suburb of Chicago, tested positive for coronavirus in the fall, with only headache and loss of taste and smell. But “a month later, things have changed,” he said. “I was cleaning my gutters and I forgot where I was, I forgot what I was doing on the roof,” said Palacios. When he remembered, he added, the idea of doing “something as simple as climbing a ladder suddenly became a mountain”. In his work, “my clients told me things like a password or an address and I couldn’t remember,” he said. At Palacios’ first appointment at the Northwestern clinic, “I did the cognitive tests and I failed all of them,” he said. On a return visit, he did another battery of tests, he said, “and I didn’t like that either.” Palacios was referred for cognitive rehabilitation in a long-standing program in Chicago that helps give patients strategies to manage and improve memory and organizational and cognitive difficulties. But he did not go, he said, because “I completely forgot”. He plans to go now. In the Northwestern study, 43% of patients had depression before receiving COVID-19; 16% had previous autoimmune diseases, the same percentage of patients who had previous lung disease or struggled with insomnia. The experts warned that, as the study was relatively small, these pre-existing conditions may or may not be representative of all long-term patients. “We are all seeing very small pieces of the elephant in terms of the long COVID group,” said Bell. “Some of us are seeing a tail; some of us are seeing logs. ”Along with neurological symptoms, 85% of patients had fatigue and almost half had shortness of breath. Some also had chest pain, gastrointestinal symptoms, heart rate, or variable blood pressure. Almost half of the participants experienced depression or anxiety. Khan said he felt “heart palpitations if I just got up to open the curtains”. Her cardiologist said she was the fifth previously healthy young woman to enter her office that week. At first, her tiredness was so strong that walking two or three laps around her 600-square-foot apartment would leave her exhausted for the rest of the day. In addition, she said she had “really intense mood fluctuations that don’t seem to be mine”. “Waking up every day in this body, sometimes hope seems a little dangerous,” said Khan, who will soon start the cognitive rehabilitation program. “I have to ask myself: am I going to recover or am I just going to find out how to live with my new brain?” This article was originally published in The New York Times. © 2021 The New York Times Company