What a long COVID diagnosis means when your doctor knows little more than Google

Last December, like millions of Americans, I contracted an extremely mild case of COVID-19. Months later, when bruises formed on my toes, I was amazed. The media has dubbed the condition “COVID toes,” but it took me months to connect the dots. Many long-distance drivers – people with post-COVID conditions – are likely yet to have to make the connection.

Medical experts now believe that COVID-19 can trigger a variety of conditions colloquially referred to as Long COVID. The Centers for Disease Control and Prevention (CDC) notes on their website fatigue, difficulty breathing, difficulty thinking, changes in smell and taste, and muscle pain. However, most conditions associated with a long COVID are not uncommon enough to distinguish them.

“When people have long periods of recovery or have never really returned to normal, they enter this mysterious diagnostic world where the pattern doesn’t match anything anyone has ever seen before,” said cardiologist Dr. Harlan Krumholz in an interview with Salon. “And no one knows what to do about it.”

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Loss of smell and COVID toes were weird enough to make headlines, eventually leading many to realize their weird symptoms were related to a previous COVID diagnosis. Therein lies an extremely frightening aspect of the long COVID: When it comes to seemingly unrelated conditions like Brain Fog and COVID Toe, many people are unaware that these ailments are related to a cough they had weeks or months ago. Now, as society turns away from testing and more cases go unnoticed, the ins and outs of long COVID mean many are unaware that a grab bag of illnesses they’re experiencing are linked to mild COVID cases from way back—what means that large numbers of people can go undetected.

Many people who described their long COVID symptoms to medics were ignored or dismissed. For others, like me, the long-COVID conundrum is causing concern, especially given that medical experts simply don’t have the answers. Could the mechanism leading to the obvious but relatively minor irritation cause other damage to my body?

RELATED: COVID-19 is linked to long-term mental health problems in recovered patients

While health officials are giving in to a population looking to move away from the pandemic, we’re still largely in the dark about the long COVID, and congressional funding for the research is tight, according to Dr. Krumholz shrunk considerably.

“It’s a moment when people hope this will all just pass,” he said. “We have a lot of uncertainty about a lot of people who are suffering and we’re moving far too slowly to try to fill the gaps.”

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When I seriously considered that I might have scurvy, I turned to the internet for help. As it turned out, my fruit consumption habits were probably not a factor in my symptoms. A quick WebMD diagnosis revealed I had frostbite, a rare condition linked to Raynaud’s syndrome, a vascular disease. Raynaud’s is typically genetic, but it can also be triggered by certain infections, such as COVID-19.

Still, it was bizarre enough that I sought a professional opinion. This opinion turned out to be just that: an opinion that meant affirmation and little more. At the Cleveland Clinic, the doctor who examined me said it was only her third case of long COVID. She was sympathetic but could offer nothing beyond visual confirmation and a recommendation of hydrocortisone to treat the irritation.

Before recognition by the medical establishment, frustrated long-time COVID sufferers banded together to get their attention. A video posted to YouTube by a group of survivors called LongCovidSOS appears to have struck a chord. The World Health Organization invited the responsible group to an October 2021 meeting, where advocates advocated an investigation into a then-misunderstood condition.

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Meanwhile, some doctors who had observed peculiar symptoms following COVID-19 infections conducted their own studies based on largely anecdotal evidence. At Yale, Dr. Krumholz possible ways to mitigate the negative consequences of a long COVID. Anecdotal evidence suggests vaccines may indeed be such a solution.

dr Lynora Saxinger, director of the Alberta Health Service’s COVID-19 Scientific Advisory Group, shares many medical professionals with concerns about the impact of COVID-19 infections on the future. However, their large discrepancies in research complicate matters. The most extreme reports indicate that “there will be an absolute tsunami of devastation in the population”

“If you look at the information available about post-COVID conditions, they’re all over the map,” she added.

While some studies minimize personal accounts of long COVID, and other studies conversely point to extremely high risk, Saxinger asserted that “the truth generally lies somewhere in the middle.”

Saxinger suggests that the cognitive decline may be more psychosomatic than studies suggest, but more research is needed to determine this.

Part of this discrepancy is due to biased statistics. A recent study in Nature suggested that COVID-19 infection increases the risk of heart disease. Mount Sinai’s rehabilitation expert, Dr. David F. Putrino told Medical News Today the results concerned COVID could lead to a “mass disability event.” However, the study was limited by data obtained from the Department of Veterans Affairs. Although experts analyzed a large cohort of subjects, they were mostly white male veterans.

Sample populations were also often oversaturated with the most severe cases of COVID-19. Much of the data we have on long-COVID comes from hospitals and from long-distance drivers who were infected before the shots.

For example, the National Institutes of Health (NIH) reported that vascular damage can lead to permanent brain damage, but only a small group of deceased hospital patients was analyzed. Saxinger suggests that the cognitive decline may be more psychosomatic than studies suggest, but more research is needed to determine this.

“We’re actually all in our own heads and our heads are part of our health,” she told Salon, underscoring the risk of sounding dismissive. “The basis of these conditions may not be solely due to the virus.”

Researchers know far less about the long-term effects of COVID-19 when symptoms are mild, Saxinger explained. That’s why dr. Krumholz also launched a study that would analyze a broader segment of the population. Such research can provide not only answers but also potential avenues for symptom relief.

According to Krumholz, different symptom clusters could be the result of vastly different mechanisms of the virus, and the findings could actually provide insights into the effects of other viruses as well. Inflammation, vascular damage and even the persistence of the virus itself have all been linked, but it could be years before we have a clear picture of how long COVID has been working and are able to treat it effectively.

“The more we start getting large numbers of people to study and treating them like partners in these studies, giving back information, working together, holding hands, the faster we can make progress, but we really need to do that as quickly as possible get it done,” he concluded.

Read more about long COVID: What a long COVID diagnosis means when your doctor knows little more than Google

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