For months, there wasn’t even a word for it, let alone medical terminology. Symptoms ranged from debilitating fatigue to brain fog and memory issues, respiratory issues, heart palpitations, shortness of breath and organ damage. Young, healthy women in their 20s and 30s were suddenly unable to work, much less walk across a room without a skyrocketing heart rate. Young men were also affected, although not at the same rate as women. Middle aged and older people were also suffering symptoms that persisted six, 12, 18 months or longer. They all had one thing in common — long-term symptoms from contracting COVID-19.

Long COVID, or what is technically called post-acute sequelae SARS-CoV-2 infection (PASC), is a condition marked by the continuation of COVID-19 symptoms after recovery from acute COVID-19. Long COVID generally refers to the persistence of symptoms four weeks or longer after the onset of COVID-19.

“What’s interesting about the post-COVID-19 patients is that the bulk of them have never been hospitalized,” says Eisenhower Board Certified Neurologist, Seymour Young, MD. “It tells us that even mild cases of COVID-19 may cause long-term neurological syndromes. Interestingly, many of the patients with these syndromes are young — 30s, 40s and 50s. COVID-19 is a new virus that is not greatly understood, but could potentially cause long-term neurological issues.”

“COVID-19 is fundamentally an uncontrolled inflammatory and vasculitis disorder, on a molecular cellular level,” says Eisenhower Primary Care Physician James Gaede, MD, who has been studying viruses for more than 40 years, including HIV. “Inflammatory clotting occurs where we don’t normally see clotting, in the tiny vessels and capillary beds, which is why we often can’t see them unless we’re examining tissue under an electron microscope. One can also see large clots occur as well, however the major tissue damage is being done at a molecular or cellular level and current imaging equipment can’t see anything that small. What we’re dealing with is ultrastructural defects of cells and clotting systems.”

“The primary illness manifestation of the clinical illness seen as COVID-19 is immune-based dysregulation, similar to what we have learned from HIV research,” says Dr. Gaede. “Twenty percent of our immune function is what all humans share and we can measure — however, 80 percent is unique to each person and no one else. As such, each patient has a somewhat novel illness clinically, and which tissues are affected in which people is a manifestation of your immune system, your genetics and your response to the virus. It’s not the virus per se that hurts you as much as your immune response to the presence of the virus in the system. This immune response is what damages tissues, most commonly brain, heart, lung, kidneys and the vascular system; however, other organ involvement can occur.”

Long-term, ongoing health issues
According to Dr. Gaede, many of the people with Long COVID can have residual and complex, ongoing health issues. Researchers have estimated that 30 to 40 percent of unvaccinated people who contract the disease will experience some effects of Long COVID over time. Among those with breakthrough cases — those who are vaccinated and then contract the virus — there is an estimate that one in five may develop Long COVID. 

“From a neurological standpoint, the post-COVID patients we see tend to fall into three categories,” says Dr. Young. “Neuromuscular, cognitive and mood, and psychiatric complaints. We’ve seen a broad range of symptoms within these categories. Given our work with polio, HIV and autoimmune diseases, it is not surprising to find neurological sequelae of COVID-19. The key is finding the biological substrate of this disorder. And to make a diagnosis and develop treatment strategies.”

“A set of key findings in understanding COVID-19 has been the understanding of the biologic substrates,” explains Dr. Gaede. “The virus enters the body through receptors in the airway, including the eyes, nose and mouth, and descends the airway, progressing into the lungs and other organs where most severe illness occurs. However, the virus replicates in cells, including the blood, altering the blood’s environment. This disruption challenges healthy levels of critical elements including oxygen, nitrogen and iron, as well as many other essential molecules for normal cellular function. These mechanisms are intensely researched to further understand disease course.” 
“We know this is not one syndrome,” continues Dr. Young. “It appears to be variable between people and it may have multiple manifestations even in the same person. My protocol with these patients is to ascertain there is nothing else going on that could be causing these symptoms. We give them a thorough neurological examination, brain imaging and an EEG with follow-up.”

The future of those living with Long COVID 
“A future pandemic we’ll face is taking care of those with Long COVID,” says Dr. Gaede. “We’re seeing patients who were asymptomatic as well as those who had symptoms begin to manifest health issues. Scientists are gathering data on what these patients are experiencing; however, it will take months if not decades to see the extent of this process. So far, those in the field have demonstrated 212 potential Long COVID symptoms.”

The treatment for Long COVID patients is variable and to a large degree unknown given the variations in the manifestation of this process. Many large university systems and research centers are undertaking studies to help develop basic strategies and symptomatic treatment but it will likely be years before researchers understand the more precise interface between human immune responses and the coronavirus and how to treat the long-term effects of this potentially debilitating process. 

“Much intensive effort is going into research and currently being developed across the country,” Dr. Young says. “We’re still learning. As we move forward we’ll be better able to assess and treat post-acute COVID neurological syndrome. We don’t have treatment strategies yet, but we’ll get there.”

The importance of being vaccinated
“It is important for people to understand that vaccinations may help diminish the potential risk for Long COVID,” notes Dr. Gaede. “Vaccinations also clearly decrease the risk of hospitalization and death for those who contract the virus. It’s important to mitigate risk by wearing a mask, keeping appropriate personal distance, and maintaining personal care. With the variant Omicron, asymptomatic people who are vaccinated as well as symptomatic persons can spread the virus. A personal safety strategy is important. It is still the best course not to catch the COVID-19 virus.” 

For more information, speak with your primary care physician. To find an Eisenhower primary care physician, call 760.773.1460.