This TikTok User Says He Developed Guillain-Barré Syndrome After Having COVID-19—How Can That Happen?
The novel coronavirus has wreaked havoc on our daily lives for nearly a year now, and it seems as though each day new symptoms, side effects, or complications of the disease pop up. Now, it's believed that contracting the respiratory illness might also make you prone to developing a rare nerve disorder—and one that comes with effects that can last for years after recovery.
TikTok user @ramdanielle recently asked followers to share what long-term symptoms they had after COVID-19, and @jamesjflowers, whose real name is James Flowers and who appears to be a young and formerly healthy guy, responded by revealing that after being hospitalized with COVID-19, he was diagnosed with Guillain-Barré syndrome: "It left me disabled. I could not walk. I still have trouble walking to this day."
If you're not familiar with Guillain-Barré syndrome (GBS), it's a rare neurological disorder that's considered an autoimmune disease where the immune system attacks the nerves outside of the brain and spinal cord, according to the National Institute of Neurological Disorders and Stroke (NINDS). In the most common form of GBS, it's believed that the immune system may mistakenly overreact and damage the myelin sheath, or the protective coating of peripheral nerves. Symptoms include tingling in feet or hands, pain, weakness, vision problems, abnormal heart beat, and digestive issues—but it can also lead to paralysis. While there is no cure for GBS, 70% of people fully recover, though symptoms like weakness and crushing fatigue can linger.
In the TikTok, Flowers says that he suffers horrible headaches and double vision, and he is unable to drive or workout. "Essentially my long-term effect from COVID is that it ruined my life," he says.
His story is certainly distressing, but it's actually not all that surprising that there's a budding link between GBS and COVID. That's because respiratory or gastrointestinal viral infections often trigger GBS. "We know a number of cases occur after the flu," Martin J. Blaser, MD, director of the Center for Advanced Biotechnology and Medicine at Rutgers University in Piscataway, New Jersey, tells Health. Forty percent of GBS cases, he says, follow a Campylobacter infection (a bacterial infection that causes diarrhea). Zika is another suspected cause, and the same with Epstein Barr virus (the virus that causes mononucleosis).
GBS can also happen following a flu vaccine—but stick with us here because it's not as grim as you think: In 1976, there was an increased risk of the nerve disorder following swine flu vaccination, says the Centers for Disease Control and Prevention (CDC). Consequently, the CDC keeps tabs on this rate during each flu season, and when a specific annual vaccine does boost the risk of GBS, it contributes to an additional one or two additional cases per million flu vaccine doses, they say. That's overwhelmingly rare—and the overall risk of developing GBS from a vaccine remains lower than getting it from the flu itself. (TL;DR: You should still get the flu vaccine!)
"Every year, there are one to two cases of GBS per 100,000 people per year in the United States," Dr. Blaser says. And this year, there are new cases of GBS being reported after infection of the novel coronavirus. Earlier this summer, the New England Journal of Medicine published case reports of five patients in northern Italy hospitals who had GBS after COVID. They first experienced symptoms like lower-limb weakness, prickling and burning sensations, and facial paralysis. And symptoms were swift, appearing five to 10 days after their first signs of COVID-19.
For some patients, GBS can go away only to come back. Dubbed a recurrent infection, Dr. Blaser and colleagues reported on a patient who had already experienced two episodes of GBS and then suffered a third after being diagnosed with COVID-19, per the journal Pathogens this year.
However, the question is: Is GBS happening more than doctors expect or not? Even if COVID can lead to GBS—does it do so more often? Is it a bigger risk? This is all new and researchers are just starting to investigate the link, and so the data that's out there is mixed. For example, a group of epidemiologists analyzed the rate of GBS treated in UK hospitals from 2016 to 2019 and compared them to the rate of GBS in 2020, and they found that there have actually been fewer cases diagnosed. Published in the journal Brain in December this year, they said that they could not conclude that COVID causes GBS.
The authors do admit that GBS cases are lower this year due to lockdowns that have kept bacterial and other respiratory illnesses at bay. And that's what Dr. Blaser suspects is happening. This year there is just a lot less flu than expected (thanks, social distancing!).
"I have no reason to disagree that they're finding fewer cases, but the question is, why? Is it because COVID doesn't cause it or because other causes of GBS are dropping off?" Dr. Blaser says. "I don't disagree with the data, but I do disagree with their conclusion. Cases of GBS are occurring in patients who have COVID."
Ultimately, more research is needed. If you are diagnosed with COVID, certainly monitor and talk to your doctor about the range of symptoms you're experiencing, report anything new (especially neurological symptoms that appear days or weeks after the initial infection), and if you have a history of GBS, your doctor should be monitoring you for neurological problems.
The information in this story is accurate as of press time. However, as the situation surrounding COVID-19 continues to evolve, it's possible that some data have changed since publication. While Health is trying to keep our stories as up-to-date as possible, we also encourage readers to stay informed on news and recommendations for their own communities by using the CDC, WHO, and their local public health department as resources.
To get our top stories delivered to your inbox, sign up for the Healthy Living newsletter