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Kelly Marcilliat realized that something was wrong at all with her thinking about a drive last summer.
He had stopped at four lanes – a situation Marcilliat, 55, of Denver, had experienced thousands of times before. This time, however, he didn’t know when it was his turn to leave.
“I sat there looking at the intersection,” Marcilliat said, “wondering,“ What am I doing? “”
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The cognitive problems appeared months after he fell ill with Covid-19, rendering him blind.
“When I was sickest with the virus, at first I didn’t feel stupid. I just felt exhausted,” he said.
Marcilliat is not alone: New research suggests that long-term symptoms of Covid-19 may appear distinctly over weeks and months.
Natalie Lambert, Associate Research Professor at Indiana University School of Medicine, has interviewed thousands of patients with ‘long-haul’ Covid-19, finding that specific symptoms tend to appear at intervals regular – usually a week or 10 days – resulting in what she calls “symptom waves”.
More research is needed to confirm the results, which were not published in a medical journal or posted on a pre-print server. But the early findings, which were shared with NBC News, could give clinicians information on how to treat long-haul more effectively and possibly even prevent debilitating symptoms.
Dr Richard Walker, president of emergency medicine at the University of Tennessee Health Sciences Center in Memphis, said Lambert’s work was “very important research.”
“Whenever we can predict the course of the disease, it gives us the opportunity to alleviate the problems,” said Walker, who was not involved in the research.
Lambert investigated 5,163 long-haul routes. Patients were contacted online through the Survivor Corps site, a dedicated long-haul site. Seventy-seven percent of respondents had tested positive for Covid-19 or had been diagnosed by doctors based on their symptoms and exposure.
In the survey, Lambert asked patients what symptoms they had and approximately how long after their illness had started.
Overall, patients reported over 100 symptoms. Not all are necessarily connected to Covid-19 – it will take time for researchers to resolve this issue.
But long-haulers tend to be cautious note-takers. “They normally monitor their symptoms week after week so that they can report it to the doctor to try and get help,” Lambert said.
When Lambert specifically analyzed the onset of symptoms, distinct patterns emerged.
“The first wave is clearly the most flu-like symptoms,” such as fatigue, headaches, fever and chills, she said. “Then it seems that the diarrhea, nausea, and vomiting usually occur five days later.”
The new waves do not mean that the previous symptoms are going away; these symptoms may persist, or they may subside and reappear later.
Ten days after the onset of the disease, another wave crashes. This time around, the new symptoms tend to be more neurological, including confusion, dizziness, and difficulty concentrating. Patients can also develop joint pain and low back pain. Some people report such intense pressure in the brain that they think their heads might explode.
Fifteen days after the onset of the disease, another wave of new symptoms: high or low blood pressure, heart palpitations, tendency to faint.
A week later – around 21 days of hospitalization – patients begin to experience problems such as mouth sores, muscle twitching, eye infections and a skin condition called ‘Covid toes’.
The symptoms of Covid-19 are variable, but overall the first waves of symptoms – flu-like illness, gastrointestinal issues, and neurological symptoms – tend to reflect what a non-long haul patient would feel, a said Dr. Rebecca Keith, an associate professor of pulmonary and critical care medicine at National Jewish Health in Denver. Keith is the co-director of the facility’s post-Covid-19 clinic.
In other words, there is no way to quickly know if a patient can become a long haul. In fact, there are still no standard criteria for defining or diagnosing long-haul. Symptoms can come and go or last for months.
“Once they start having symptoms beyond six to eight weeks, people start to get really worried,” said Keith, who was not involved in Lambert’s research.
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Dr Michele Longo, assistant professor of neurology at Tulane University in New Orleans who works with long haul, said the neurological symptoms listed in Lambert’s survey are, indeed, “the most frequently reported. by patients “in his clinic.
“Why there appears to be a predilection for neurological symptoms in the post-acute sequelae of Covid infection remains to be understood,” said Longo, who was not involved in the research. (“Sequelae” is a Latin word that refers to conditions that arise as a result of illness.)
Keith agreed. “If we can define the pathways that contribute to it from a scientific point of view,” she said, “we can think about how to talk about therapies and how to hope.”
Patients, too, are in desperate need of answers.
“It’s extremely disturbing that you can’t tell you why something is happening to you,” Marcilliat said. “It gives you a feeling of total lack of control, like you’re a leaf in the wind.”
“Nobody wants to be like that,” he said.
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