CHICAGO (WLS) -- Across the globe people are reporting persistent, mysterious and frightening symptoms for weeks and months after becoming infected with COVID-19.
Patients with severe disease would be expected to suffer from long-lasting consequences. But the ABC7 I-Team found a growing number of younger people, even those with a milder form of the virus, are experiencing bizarre and frightening long-term symptoms. They have become known as the "long haulers."
Medical experts and researchers are now scrambling to find the triggers and best treatments for those who can't seem to get better from this post-viral syndrome.
The unusual symptoms include brain fog, loss of sense or smell, headaches, fevers and chronic fatigue. Some of the more severe ailments being reported are spiking blood pressure, racing heart beats and blood clots.
Elizabeth Moore from Northwest Indiana is one of those patients. Months after getting over COVID-19 she started having frightening, unexplained symptoms.
"I could feel it in my body out of nowhere, this sort of buzzing, rushing sensation, tingling in my arms, especially in my left but it was on both sides," she said.
The 43-year-old wife, mother and lawyer said she never had medical issues until now.
She said she would try to sleep, but the tingling sensation would jolt her awake and leave her gasping for air. Moore said it would feel as if someone was pouring ice cold water down her back. Her heart would race and her blood pressure would spike to dangerous levels.
"I truly thought I had a heart attack or a stroke, like that's what it felt like to me. It was terrifying," she said.
Moore said she's also suffering from symptoms ranging from extreme fatigue, brain fog and, most recently, intense gastrointestinal issues.
She's been to the emergency room twice with no resolutions. One doctor told her she might just be suffering from gastroesophageal reflux disease or GERD.
Moore and other frustrated patients are joining online forums and social media sites to find support, validation and answers.
Diana Berrent is the founder of one such site, called Survivor Corps.
"Over and over and over again, people are being turned away by their doctors, being given diagnoses of anxiety. And when their lab reports are saying nothing of the kind," she said.
Survivor Corps is a grassroots organization with an estimated 80,000 members on Facebook.
Berrent, a New York photographer, started the non-profit after posting about her own COVID-19 journey. She discovered there were many people who were feeling anxious and alone as they were dealing with the virus.
She said the group's core mission is to connect the survivor community with the opportunity to donate plasma and support scientific research related to COVID-19.
"We have sort of unintentionally created the world's greatest data set on survivors, that is being recorded in real time," she said.
Read the full COVID-19 "Long Hauler" Symptoms Survey Report here
Results of a survey conducted by the group and analyzed by researcher Natalie Lambert, PhD, at the Indiana University Medical School was just released. It finds "long hauler" symptoms are far more numerous than what is currently listed on the Centers for Disease Control and Prevention website. The Survivor Corps list is extensive.
"Doing these sorts of analysis projects, this is just the first of many that we will be putting out and disseminating. We are an open source from beginning to end, so we will be disseminating this to the entire medical community. We want doctors to be aware of this, we want patients to be aware of this, it will be available for everybody to download on our website," said Berrent.
With so many unknowns about a virus only discovered about seven months ago, some researchers said they are open to crowdsourced information and collaboration.
The CDC just acknowledged in a new report that one-third of COVID-19 patients who were not hospitalized may experience long term symptoms weeks after their initial illness.
Earlier in July a study in JAMA Network analyzed a little over 140 patients in Italy. It found nearly 90% of patients who recovered from COVID-19 reported some kind of lingering symptom, including breathing issues and fatigue.
"The virus should not be taken lightly, it's causing a lot of damage in multiple different organ systems. And so, it's not surprising that people have symptoms that persist for extended periods," said Dr. Avindra Nath, Clinical Director of the National Institutes of Neurological Disorders and Stroke.
He said it is too early to reach any conclusions, including whether the lingering issues will be permanent.
Nath is launching several studies at the National Institutes of Health to look at the immune systems of patients and study the neurological complications of the virus.
"We're going to try to figure out how much of that may be coming from a deranged immune system and how much of that may be coming through persistent viral infection," he said.
In Chicago, the Neuro COVID-19 Clinic at Northwestern Memorial Hospital is one of only a handful of medical centers dedicated to studying and treating these long term effects.
Dr. Igor Koralnik, chief of Infectious Diseases and Global Neurology at Northwestern Medicine, said the virus can start an inflammatory response in the body that can lead to a multitude of different symptoms.
He said other causes can 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 who experience side effects and is also studying the long-term effects COVID-19 can have on the brain, nervous system and muscles.
"And so we are learning by following them over time, to see how long those complications are, and how to manage them In the meantime," he explained.
And, he added, "The COVID-19 Clinic is open to everyone from all over the US, and we can accommodate people in televisits or in-person visits as they prefer."
Moore discovered the clinic in a support group posting and just became a patient.
"Finding Northwestern was a relief, just to have, at least, someone besides being on a social media group, have a doctor say you're not crazy," she said.
She wants other patients who might be feeling hopeless to know that they are not alone.
"Now that we're starting to get, you know, doctors on board, who are willing to research and look into what's going on I think that's a really positive thing and you just need to keep moving in that direction," said Moore.
In the UK, a group of long haulers started the website, LongCovidSOS to find answers.
Coronavirus symptoms: Mysterious, scary symptoms persist long after initial COVID-19 infection
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