What is long COVID?
You’ve probably read articles or seen headlines about a mysterious problem called “long COVID.”
Long COVID refers to ongoing abnormal symptoms that persist for weeks or months after an initial infection. Some of these patients have been profiled in the mainstream press describing how their lives have been upended many months after an initial mild bout with COVID-19.
Interestingly, a lot of the reports of persistent symptoms are occurring in people who didn’t have a severe initial illness course.
I know that I’ve been seeing these patients in my office quite a bit lately - normal people who aren’t crazy, many of whom are high functioning - who are reporting that they aren’t the same many months after their initial infection.
So who are these people? What symptoms do they have? Why are they suffering like this?
A couple of recently published studies can give us some insight. Let’s go through those and then I’ll discuss my own anecdotal experience.
Who are the COVID long haulers?
A recent study just put out in pre-print form tried to characterize who these people are.
The study tried to identify long haulers by doing an analysis of medical charts from the University of California COVID Research Data Set (UC CORDS), which has charts from over 178,000 patients treated in the state of California.
They found a wide distribution of ages, genders, and ethnicities suffer from symptoms persisting more than 60 days after infection:
Slightly more women than men (58% to 42%)
A mix of different races - more than half Hispanic, about a third White, and about 5% each Asian and Black
A whole range of different ages, with the majority of patients between age 40-70:
So the long haulers can be anyone - no age group, race, or gender is spared.
What symptoms do the long haulers have?
It seems that there are multiple different types of long term COVID symptoms.
The most common symptoms that people report are chest pain, difficulty breathing, anxiety, abdominal pain, and cough. The presence of anxiety here shouldn’t be surprising - after all, if I didn’t feel right more than 2 months after getting infected, I would be pretty anxious!
The authors of this study broke up their long haulers into 5 different symptom clusters:
Chest pain-cough cluster. Most people here have chest pain as their predominant symptom. They also seem to deal with cough, insomnia, a fast heart rate, and episodes of fainting.
Shortness of breath-cough cluster. Shortness of breath is the major issue here. This group also deals wit cough, palpitations, diarrhea, and a fast heart rate.
Anxiety-fast heart rate cluster. These patients experience anxiety most severely but also deal with a fast heart rate, heartburn, diarrhea, and hair loss.
Abdominal pain-nausea cluster. Abdominal pain is the biggest symptom but they also seem to report nausea, diarrhea, headache, and fever.
Low back pain-joint pain cluster. Aches and pains are the biggest culprit for this group. Back pain, joint pain and swelling, fatigue, and muscle aches are ongoing issues for this group.
According to this study, about a third of the patients characterized as long-haulers had mild symptoms or were asymptomatic at the time of their COVID diagnosis.
There also seems to be a subset of patients who are experiencing “brain fog” as their primary issue. These patients are reporting confusion, cognitive dullness, and just a generalized slowing of their thinking.
These symptoms can be really debilitating, and many people are suffering. It’s not a great situation.
Why is this happening?
Nobody really knows the definite answer here. There are a couple of theories that bear mentioning. This article looking at what we know is worth a read.
First is the ongoing immune activation hypothesis. The theory here is that infection with the virus mobilizes your immune system to be overactive in a way that affects organ systems around the body.
There’s precedent for a long term impact from what theoretically should be a short term viral infection - Chikungunya, a mosquito born viral disease, has demonstrated similar long haul symptoms that are thought to be driven by persistent immune system dysregulation.
So ongoing immune system dysfunction may be responsible for all of the manifestations that we’re seeing since the immune system interacts with all the other systems of our body.
Second is the persistent infection hypothesis. The idea here is that you have ongoing symptoms because you haven’t fully cleared your infection. This isn’t thought to be a usual problem with coronaviruses, but, as we all know, COVID can be weird.
This idea comes from the observation that biopsies taken on some COVID patients months after their illness have demonstrated persistent live virus.
In the persistent infection hypothesis, we’re simply seeing an infection that we are unable to clear.
Perhaps the anecdotal observation that long COVID patients get better after vaccination lends support to the persistent infection hypothesis, although it is way too soon to consider that as anything more than speculation.
My experience with these patients - many symptoms, few treatments
I’ve seen quite a few of these patients in my office. Probably a couple dozen at this point.
They have a smattering of different symptoms. Persistent shortness of breath and intermittent chest pain seem to be most common. But I’ve certainly seen folks who are reporting brain fog and ongoing anxiety.
Treating them is hard. The first thing I do is look for evidence of abnormal heart or lung function - I sent them for tests like echocardiograms, stress tests, lung function tests, and CT scans.
I’ve been finding very few abnormalities on testing. Everything looks “fine” in the majority of these patients.
So we’re left with few action items. I recommend all of these patients use an incentive spirometer, that they track their physical activity and try to beat their log everyday, and that they all get vaccinated.
I also recommend they do everything possible to clean up their diet and reduce their likelihood of metabolic syndrome, given the link between metabolic syndrome and severe COVID.
There’s some evidence to suggest that ivabradine, a drug used for heart failure, may help treat some of the symptoms of fast heart rate in these patients, although that data is super preliminary. I haven’t prescribed this medication yet for my long haulers.
The bottom line here - we still have a lot to learn about these patients
Long COVID is still incompletely characterized and very poorly understood.
Based on my clinical experience, I suspect we’re going to be dealing with this for quite some time. We need to learn more about what’s going on with the biology and do more trials in treatment.
I’m still looking to see more quantified information about the impact of vaccination on long hauler symptoms before believing this is a true fix.
I suspect that we may start to think of long COVID as a chronic disease. Just like any chronic disease, COVID is going to be with us for a long time.
Thank you for reading! If you’re enjoying my newsletter, please consider sharing with your friends and family and encouraging them to subscribe!
I always appreciate any feedback or thoughts you might have. You can reply directly to this email to reach me directly.