Patients with severe illness would be expected to suffer lasting consequences. But the ABC7 I-Team found that increasing numbers of younger people, even those with a milder form of the virus, experience strange and terrifying symptoms in the long term. They are known as the “long haulers”.
Medial experts and researchers are now struggling to find the triggers and best treatments for those who don’t seem to get better from this post-viral syndrome.
Unusual symptoms include brain fog, loss of sense or smell, headaches, fever, and chronic fatigue. Some of the most serious ailments reported are increased blood pressure, fast heartbeat, and blood clots.
Elizabeth Moore of Northwest Indiana is one of those patients. Months after overcoming COVID-19, she began to have unexplained and terrifying symptoms.
“I could feel it in my body out of nowhere, this kind of buzzing, rushing, tingling in my arms, especially on my left, but it was on both sides,” he said.
The 43-year-old wife, mother and lawyer said she has never had any medical problems until now.
She said she would try to sleep, but the tingling sensation would shake her and leave her breathless. Moore said it would feel like someone was pouring ice water down her back. Her heart was racing and her blood pressure was rising to dangerous levels.
“I really thought I had a heart attack or a stroke, like that’s what it felt like to me. It was scary,” he said.
Moore said he also suffers from symptoms ranging from extreme fatigue, brain fog and, more recently, severe gastrointestinal problems.
She has been to the emergency room twice without resolutions. A doctor told him that he could be suffering from gastroesophageal reflux disease or GERD.
Moore and other frustrated patients are joining online forums and social networking sites to find support, validation, and answers.
Diana Berrent is the founder of one of those sites, called Survivor Corps.
“Over and over and over again, their doctors reject people, they give them diagnoses of anxiety. And when their lab reports don’t say any of that,” he said.
Survivor Corps is a grassroots organization with an estimated 80,000 Facebook members.
Berrent, a New York photographer, started the nonprofit after posting about her own COVID-19 trip. She discovered that there were many people who felt anxious and lonely while dealing with the virus.
She said the group’s primary mission is to connect the surviving community with the opportunity to donate plasma and support scientific research related to COVID-19.
“We have unintentionally created the world’s largest survivor dataset, which is being recorded in real time,” he said.
Read the full COVID-19 “Long Hauler” symptom survey report here
The results of a survey conducted by the group and analyzed by researcher Natalie Lambert at the Indiana University School of Medicine has just been published. You find that the symptoms of the “long hauler” are much more numerous than those currently listed on the CDC website. The Survivor Corps list is extensive.
“By doing these types of screening projects, this is just the first of many that we will publish and disseminate. We are an open source from start to finish, so we will disseminate this to the entire medical community. We want physicians to take this into account We want patients to know, it will be available for everyone to download from our website, “said Berrent.
With so many unknowns about a virus that was only discovered about seven months ago, some researchers said they are open to information and collaboration from collective sources.
The CDC has just recognized in a new report that a third of COVID-19 patients who were not hospitalized may experience long-term symptoms weeks after their initial illness.
In early July, a study on the JAMA Network looked at just over 140 patients in Italy. It found that almost 90% of patients who recovered from COVID-19 reported some type of persistent symptom, including respiratory problems and fatigue.
“The virus should not be taken lightly, it is causing a lot of damage to multiple different organ systems. Therefore, it is not surprising that people have symptoms that persist for prolonged periods,” said Dr. Avindra Nath, Clinical Director of the National Institutes. neurological disorders and strokes.
He said it is too early to reach conclusions, even if persistent problems will be permanent.
Nath is launching several studies at the National Institutes of Health to look at patients’ immune systems and study the neurological complications of the virus.
“We are going to try to find out how much of that can come from a deranged immune system and how much that can come from a persistent viral infection,” he said.
In Chicago, the Neuro COVID-19 Clinic at Northwestern Memorial Hospital is one of the few medical centers dedicated to the study and treatment of these long-term effects.
Dr. Igor Koralnik, head of Global Neurology and Infectious Diseases at Norhtwestern Medicine, said the virus can initiate an inflammatory response in the body that can lead to a multitude of different symptoms.
Other causes, he said, may be a direct invasion of the nervous system by the virus or a post-infectious autoimmune manifestation.
Koralnik said the clinic is providing care for patients experiencing side effects and is also studying the long-term effects that COVID-19 may have on the brain, nervous system and muscles.
“And so we are learning by following them over time, to see how long those complications last and how to manage them in the meantime,” he explained.
He added: “The COVID-19 Clinic is open to everyone, from all over the United States, and we can accommodate people on televisions or in-person visits, as they prefer.”
Moore discovered the clinic in a support group and became a patient.
“Finding Northwestern was a relief, just because you had at least someone besides being on a social media group, that a doctor said you’re not crazy,” he said.
She wants other desperate patients to know that they are not alone.
“Now that we’re starting to have, you know, doctors on board, who are willing to research and analyze what’s going on, I think it’s a really positive thing and you just need to keep moving in that direction,” said Moore.
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