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Brigid Bergin: It's The Brian Lehrer Show on WNYC. Welcome back, everybody. I'm Brigid Bergin from the WNYC and Gothamist newsroom. Now we're turning our attention back to long COVID. COVID symptoms normally last for a few weeks, but what happens when the symptoms don't go away after a month or even a year? According to the Centers for Disease Control and Prevention, vaccinated people with COVID should normally socially isolate for five days, and can then go out with a mask on if they're feeling better. Cases where symptoms continue for months or over a year are now being termed medium and long COVID.

While the percentage of people who suffer from longer-than-normal COVID might seem relatively small, it still amounts to millions out of the total population. Both are still being studied by doctors and researchers. Here to speak with us today to discuss the lingering effects of COVID is Seth Congdon, an assistant professor in the Department of Medicine at Albert Einstein College, and the medical co-director of the COVID-19 Recovery Clinic. Welcome to WNYC, Dr. Congdon.

Seth Congdon: Thank you so much for having me.

Brigid Bergin: Listeners, before I get into this conversation, we want you to call in with your questions for the co-director of the COVID Recovery Clinic, Dr. Congdon. Have you had lingering COVID symptoms? How long did your symptoms last, and what were they? Were you able to seek treatment for them? If you currently have long COVID symptoms now, how are you feeling? How is it impacting your daily life and what activities? Are you searching for solutions and looking forward to more medical updates? We want to hear from you. Give us a call at 212-433-WNYC, or tweet @BrianLehrer. That's 212-433-9692.

Dr. Congdon, the CDC study released found that one in five adult COVID survivors under the age of 65 in the United States has experienced at least one health condition that could be considered associated with long COVID. How severe are long COVID symptoms, and who's most at risk of contracting the condition?

Seth Congdon: The severity of long COVID is certainly a spectrum. We've seen many people who luckily are on the milder end and do get better quickly, but burned into my brain are those people I've seen who have been suffering really debilitating symptoms for years at this point. I'm sorry, I totally blanked on the second part of your question, if you don't mind repeating it.

Brigid Bergin: No, not at all. The question is, what do those symptoms look like, and who's most at risk for this condition?

Seth Congdon: Some of the most common symptoms are just generalized fatigue, exertional intolerance, meaning, you get tired when you try to do things that, before getting COVID, certainly would not have made you tired. Troubles with their breathing, troubles with their thinking, their concentration, their memory, what's commonly called brain fog. There are people who are suffering new and really debilitating pain. The list really goes on.

People that seem to be at risk of it, it seems to be anyone, to be honest. Just as many, if not more, people that had what we would call mild or even asymptomatic COVID infections, in that, they didn't need to be hospitalized, make up a large portion of people suffering long COVID, but also people that did get really sick and need to be admitted to the hospital and the ICU.

Brigid Bergin: You mentioned brain fog. I think we've heard a lot about that in the last couple of years. How would you describe that, and why is it a common neurological symptom of long COVID? Are there other neurological symptoms associated with it?

Seth Congdon: Yes, there have been a whole host of neurologic symptoms. Specifically, brain fog, it's a catch-all term for trouble with being able to do the normal mental exertional activities you're used to. A lot of people say the most striking thing is, they can't hold thoughts in their head. They'll be doing a normal activity, running a meeting at work, trying to teach students or whatever, and they just lose their train of thought, and then they panic. Problems with short-term memory, problems with remembering directions, things like that.

We don't obviously know exactly what's causing it, although, there has been some recent research, which does show easily demonstrable long-lasting abnormalities in the brain in people that had COVID.

Brigid Bergin: For people who are in the midst of-- We're seeing another increase in the number of COVID infections. Are there signs people should look for to tell them if they have long COVID and additional treatments they should be seeking because of it?

Seth Congdon: Yes. Let me just quickly detail that research study looking at brain issues in people with long COVID. It was actually the first study where we had an MRI of the brain both before people got COVID and after people got COVID, so we can compare what the brain looked like before getting COVID and after. Compared to healthy controls who didn't get COVID, they found decreases in what's called grey matter, which is really the cells of the brain in areas of the brain that are involved in encoding memories, that are involved in regulating emotions. Importantly, these areas are directly connected to the smell center of our brain, called the primary olfactory cortex.

I think it's very important, if you get COVID and you notice you have a problem with your smell, your sense of smell is abnormal, to not just brush that off as, "Oh, yes, that's a fairly common side effect of getting COVID, but it's going to go away and get better," but to seek treatment for it because there is treatment for it.

Brigid Bergin: Let's talk to some of our callers who, I think, can probably relate to both the symptoms and experiences you're describing. Ian in Rockaway, New Jersey, welcome to WNYC. Ian, excuse me.

Ian: Hello, hi.

Brigid Bergin: Hi. I apologize, Ian, for mispronouncing your name.

Ian: That's okay. I just wanted to call and get on the line and say that I have a theory that I have developed some issues forming words after having COVID. I was wondering if you've seen that in any other people. I was trying to do some research on the internet, but I couldn't find anything, and I haven't had a chance to see a doctor about it yet.

Seth Congdon: The problem is more you can't remember a word that you used to know, or you remember what the word is, but you can't actually get your mouth, your voice to say it?

Ian: It's more like I can't physically make my mouth say the word. I know the word I want. It feels like a speech impediment almost sometimes when I'm speaking, especially if I'm speaking quickly. I never used to notice that happen to me so often in the past. I have to slow myself down and talk slower and think harder about what I'm going to say ever since I had COVID.

Seth Congdon: Ian, I do have to say, that's not one of the more common things I've heard when I've spoken with patients, but you're clearly experiencing it. In terms of getting that evaluated, you could have a doctor refer you to a specialty called speech-language therapy. They really help with, basically, doing physical therapy for the muscles and the various-- It's really an intricate system in how we're able to produce speech. I think that's something that would be worth looking into.

Brigid Bergin: Ian, thank you--

Ian: Okay, thank you.

Brigid Bergin: Thank you so much for your call. Best of luck as you are on your road to recovery. Let's go to Jeff in Park Slope. Jeff, welcome to WNYC.

Jeff: Good morning. Thank you so much for taking my call. I do have some specific questions, but I want to just say, I've been dealing with long COVID for two years now. I got sick very early on in the pandemic. I was really sick, laid out on the ground for almost seven weeks. Then the symptoms started about a month after, let's call, recovery. In that time, I have seen so many specialists. Besides my regular general practitioner, I've seen several neurologists, neuropsychologists, psychologists, physical therapists. I joke around with my wife, I think the only thing I haven't done so far is an exorcist.

I have some symptoms. One weird thing that happened that I would to ask your guest is, I developed diabetes after getting COVID. I wasn't even prediabetic, or maybe slightly. I'm 56, but in generally okay condition. I've heard from several doctors saying that's not uncommon. I've also had some weird temperature controls. It seems to be attacking the autonomic system, digestion and sweating profusely at night, besides the top four that the doctor quoted in the beginning. I would like to know if he's seen some of these other conditions, including the diabetes thing, where I'm super curious about.

Brigid Bergin: Jeff, thank you for your call. Dr. Congdon, have you seen any connection to diabetes and long COVID or any of the other symptoms that Jeff was describing?

Seth Congdon: I've certainly seen many people newly diagnosed with diabetes after getting COVID. I haven't seen people that weren't even close to developing diabetes, as in, they had had recent blood tests that vary in the normal range. That being said, COVID certainly can affect every part of the body, including the pancreas or our fat tissue, which can make the insulin our pancreas produces not work well and put us at risk of developing diabetes. It certainly could be the culprit.

Then in terms of the autonomic dysfunction, this is an unfortunate and extremely common complication or symptom of long COVID, and it really can affect any part of the body. The autonomic nervous system interfaces with essentially all parts of the body.

Brigid Bergin: The types of symptoms that some of our callers have described and that you have described, are we talking about conditions that will now become lifelong conditions? How permanently and persistent will these symptoms be for people who develop them, and are there special resources or treatments that you would advise people to be seeking out?

Seth Congdon: Yes, certainly. We don't have the answer to how long the symptoms are going to be. Obviously, we hope they won't be long term or lifelong. For certain constellations of symptoms, I think it's important to seek out treatment. Specifically for autonomic dysfunction, there is a whole host of ways to try and improve keeping as much volume as possible in the blood vessels, circulating blood around our body. This involves having a high-salt diet, unless your doctor has told you your blood pressure is too out of control or you have another condition where you can't have a high amount of salt.

If you're having trouble with your heart rate going haywire, beating really fast or getting dizzy when you change positions, I think it would be worth trying to increase salt in your diet. Certainly, stay very well hydrated. Some people have found benefit from wearing what are called compression stockings, very tight-fitting stockings, as well as abdominal binders, that keeps as much of the blood volume inside the blood vessels themselves. If you're trying to get back to exercise, exercise starting not with upright exercise, running, doing squats, but doing what's called recumbent exercise. That's where you're not upright. You're leaned back. There's recumbent bicycles. If you have access to a pool, swimming, things like that.

Brigid Bergin: Interesting.

Seth Congdon: Despite all of those, what we call non-pharmacologic, non-medicine treatments, are working. There are medicines that can help, and you should discuss that with your primary care doctor or a cardiologist. For the trouble with smell, I do think it's very important if your sense of smell has not returned to normal, to do what's called olfactory training. Olfactory is the fancy science term for smell. One thing that's been found is that COVID makes the receptors in the cells of our olfactory center and our brain get downregulated, decreases the amount of receptors. Everything we're sniffing into smell, those are not actually getting to bind to those cells and cause the smell course part of our brain to actually activate.

The treatment for this is what's called olfactory or smell training. You get a set of essential oils, which are very strong smells, and you smell them two times a day. You should do a set of, I'd say, around four to six of them. While you're smelling it, this is very important, you try and connect the smell with a memory of that smell. For example, if you're smelling the rose essential oil, trying to think of a time you had a bouquet of roses or in a rose garden. If you're doing a mint essential oil, trying to think of a time you made a dish with a lot of mint in it or around fresh mint, et cetera. This has actually been shown in research studies to improve that sense of smell back to normal.

Brigid Bergin: That's so interesting. Let's take another caller, Steve from Nutley, New Jersey. Steve, welcome to WNYC.

Steve: Oh, thank you so much for taking my call. I've been wanting to share this information for a long time now. I do appreciate it, and thanks again. I had long COVID early on in the pandemic and I was sick for about six months, almost seven months, actually. I had all the issues. I had terrible fatigue. I had what was called COVID pneumonia in both lungs, which cannot be treated with drugs because it's viral. Your body has to beat it up. That was concerning.

I went to an infectious disease doctor. She put me on steroids, and almost immediately, I began to change. I began to turn the corner on this. I think it's important information for your listeners and anyone who has long COVID, that this was the drug I essentially believe saved my life.

Brigid Bergin: Wow.

Steve: I had nights sweats every night, and I mean, seven nights a week, some as severe as to changing the entire bedsheets and every night. It was my new normal for almost seven months. I thought, well, this is the way I'm going to live. It's the way I'm going to live. After the steroids, I started to sleep through the night with less and less night sweats, my energy came back. I took the vaccine, which I believe also helped my body recognize the virus. I began to turn the corner. Thank God. It really was frightening.

Brigid Bergin: Steve, thank you so much.

Steve: Yes, that's it.

Brigid Bergin: We're very glad to hear that you turned the corner, and I'm sorry that you had such a prolonged experience. Dr. Congdon, the treatment that Steve described, is that something that you are seeing as a treatment for long COVID? To what extent is that something that people could be potentially talking to their doctors about?

Seth Congdon: I'm so glad you got better, Steve. Steroids certainly have a role in acute COVID. When you're sick enough to need hospitalization, there's good data showing that. Steroids can be used to treat many different conditions, but I would not say it's a cure for everyone with long COVID. Steroids basically calm down inflammation in the body. The issue is, if there's something causing persistent inflammation, you can't be on steroids forever. Steroids have many side effects, including making your body- since you're taking the steroid itself, making your body say, "Oh, I don't need to make my own steroids," because all of our bodies make steroids, which can lead to, basically, your adrenal glands no longer doing their job, which can be life-threatening.

I can't say that it's something that everyone should try, but it's worth talking with your primary care doctor or other specialists to see if they think it could benefit you, but understanding that the reason they may not recommend it is because, if they do a course of the steroids and you get better but then you get worse again, this is not a medicine you can be on for the long term.

Brigid Bergin: Dr. Congdon, I want to go back to something we teased in the introduction, medium COVID. What is the best way to identify medium COVID, and how do you distinguish it from long COVID?

Seth Congdon: I'm going to be frank. I actually have never heard that term before, so I don't even know what the definition of it is. Certainly, I've seen people in the COVID Recovery Clinic, where they get to me maybe around two to three months after their acute illness and they're not feeling totally back to normal. I assess them, I make some recommendations and I say, "Okay, I'm going to order this test. When the results come back, we'll check in." When I check in on them in a month or two, they actually feel back to normal. Perhaps that's what it means. People that do have these prolonged symptoms, but that luckily they do resolve in fairly short amount of time.

Brigid Bergin: Interesting. Let's go to Francesca in Queens. Francesca, welcome to WNYC.

Francesca: Hi. Thank you so much. I have a question about the vaccine and how it has affected long COVID for some people, improved it for some people. I got sick also very early in the pandemic and I had the whole range of-- I had some neurological things. I couldn't remember words. I actually forgot what side of the street to drive on and I had to stop driving for a little while. I had a heart rate thing, where going up a flight of stairs would put my heart rate at 160, and 10 minutes of walking would put me at 110 for four hours.

Then I just had the burning in my lungs. I had the fatigue. It was like being an 80-year-old. I was very athletic before getting COVID. I physically couldn't get off the floor. It was like you have to climb the furniture like an elderly person to get up. That was my life. I was starting to resign myself to like, I was going to be living like an 80-year-old. It was awful.

Then I had the second dose of the vaccine and I was so sick for so many days. I was very sick for about five days and vaguely sick for 10 days, but somewhere around the five-day mark, all of a sudden, and I had been in bed for five days, I could climb stairs, no problem. I could get up off the floor, no problem. A lot of my symptoms resolved very suddenly after that second dose. That was hard to hard to process. My body was clearly in some kind of a big battle with whatever that dose was doing. I'm not cured. I gained weight that I cannot lose no matter what I do. I have high A1C now, I never had. I have high cholesterol that I never had.

Some things are still difficult, but I'm able to function now in a way that I couldn't before. I'm only hearing anecdotally, maybe 30% of people maybe get better with the vaccine. Is there any research being done on this? Is this being looked into? I don't have a real explanation for why I got better. I'm just really grateful that I can participate in my life again. I'd like to know why because it would help others.

Brigid Bergin: Francesca, we're so glad that you are feeling better. Dr. Congdon, is there any research related to Francesca's situation and her experience with that second dose of the vaccine providing some relief to the symptoms?

Seth Congdon: To my understanding, it still, unfortunately, is all anecdotal in terms of long COVID symptoms getting better after vaccination. Yes, the trend is that, for a good portion of people, their symptoms do get better. I'd say a larger portion of people, their symptoms don't get better, and a very small portion of people they get worse. We do now have enough data to say, getting vaccinated, if you have not suffered long COVID or haven't gotten COVID yet, it does reduce the risk of getting long COVID if you get infected after you're vaccinated by about 50%. At least we have that statistic.

Then in terms of the mechanism of perhaps how you could have gotten better, that's still totally not understood. I think it's a very important area of research, and hopefully, our immunology colleagues are looking into that.

Brigid Bergin: Absolutely. The science keeps evolving in this, what has been a fairly mysterious disease. Are there any other findings about long COVID that have recently emerged that we haven't brought up yet that you think might be helpful for people to know?

Seth Congdon: Yes. I think this is important. This is another study that shows a long-term change in the body, and explains some symptoms people are having that maybe they're driving themselves crazy because their doctors have done tests and told them there's nothing wrong with the test, so I don't understand your symptoms. This is for people with the exertional intolerance, getting tired when they try and do things that prior to getting COVID, wouldn't make them tired at all.

This was a study that looked at people, the majority of which were not hospitalized, so they had mild COVID, comparing them to people of the same age and medical problems that didn't get COVID. They had them do an exercise test. They looked at what is going on in the body that's making people with long COVID not be able to exercise as much. Before they did it, they looked at various tests to make sure there was no issues with the heart, no issues with the lungs, they didn't have anemia, not enough red blood cells in their body, which could contribute to not being able to exert yourself.

What they found was, there was what's called lower oxygen consumption in people with long COVID. That means their body was using less oxygen. This wasn't due to a problem with oxygen delivery. The heart was pumping oxygenated blood well and it was circulating around the body normally, rather it was due to a problem with the body being able to extract the oxygen from the blood to use it. A lot of the common tests that doctors can do, an ultrasound of your hearts, test to see how well your lungs are functioning, X-rays, CT scans, aren't going to catch that.

Unfortunately, it doesn't point to, okay, this is the treatment for how to fix that, but it is validating to say, look, we have clear data. These people were anywhere between 10 to 12 months out from their COVID infection, so long-lasting symptoms almost a year that say, yes, there is physiological evidence of why you can't exert yourself like you used to.

Brigid Bergin: Wow. It sounds like we will be studying this disease's impact for a long time. We need to leave it here for now. Thank you to Seth Congdon, assistant professor at the Department of Medicine at Albert Einstein College, and the medical co-director of the COVID-19 Recovery Clinic, who was talking to us today about lingering COVID symptoms and the latest updates. Thank you so much, Dr. Congdon.

Seth Congdon: Thank you.

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