Rehab Without Fatigue? The Great Challenges of Long COVID Treatment

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Brittany Thomas (co-host) 

Hey MBO listeners. This is Brittany Thomas, My Body Odyssey producer. While we’re busy in the podcast kitchen cooking up the next episode, we wanted to give you a little snack. So today we’ve got a bonus for you! A little something extra. Just because we like you. 

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So our last episode was about Long COVID. It featured journalist Kaelyn Lynch. 

Kaelyn

My name is Kaelyn Lynch, journalist and filmmaker. 

Brittany Thomas (co-host) 

And Dr. David Putrino

Dr. David Putrino

I’m the Director of Rehabilitation Innovation for the Mount Sinai Health System.

Brittany Thomas (co-host) 

Kaelyn Lynch has lived through her own COVID odyssey and reported on many others with this really debilitating condition. Dr Putrino is a respected expert working on the front lines of long COVID treatment. Both of them are a wealth of information about Long COVID. But a lot of it we really didn’t have room for in the last episode. So we’ve pulled together the best bits from Rob’s interviews with Kaelyn and Dr. Putrino about Long COVID. Current theories, possible treatments, and the research that is happening right now. Whether you have Long COVID or not–we felt like this is stuff that everybody should know. 

Dr. David Putrino

Every time you get COVID, it does a little more damage to your body. Your chance of dying from COVID increases your chance of getting Long COVID increases. We’re still worrying about a large swath of the population that could end up with Long COVID.

Brittany Thomas (co-host) 

We hope this “Long COVID PSA” is helpful. Stay tuned, we’ll be back with our next regular episode soon.

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TREATMENTS

Rob Thomas (co-host) 

Is there the need for active people with Long COVID to just completely forget their past and redefine exercise? You know, and start with like chair yoga, deep breathing, just like stuff that they thought they wouldn’t be doing for 50 years?

Kaelyn

Yeah, I think that’s a big part of it and has been a big part of it for me is kind of redefining what I think of as physical activity. Figuring out what level of activity you can do that won’t cause a crash after the fact.

Brittany Thomas (co-host) 

If you remember Kaelyn’s episode, Kaelyn was, like, scary fit: martial arts, crossfit, roller derby–she was hardcore. And after she got COVID, she tried going back to the gym to lift weights and it went badly. 

Kaelyn

I put the weight down and my feet were numb. And I thought: that’s not good. 

Brittany Thomas (co-host) 

She realized that exercising with Long COVID didn’t just mean lifting lighter weights or going for shorter runs. It meant that she had to dismantle her idea of exercise and build it back up from the ground. Like take it all the way back to square one. One thing Kaelyn tried was a physical therapy progression developed by David Putrino, explicitly for Long COVID patients. 

Kaelyn

It’s called Autonomic rehab and it’s specifically for people with Long COVID who have Autonomic Nervous System dysfunction. 

Dr. David Putrino

What we do with our Autonomic rehabilitation program is very gently activate the Autonomic Nervous System. 

Brittany Thomas (co-host) 

The Autonomic Nervous System–just as a reminder–is the part of the nervous system that controls things like breathing, heart rate, blood pressure, digestion. The involuntary stuff that your body is doing when you’re not even paying attention. 

Kaelyn

And what they do is kind of combine these like extremely gentle movements with deep breathing exercises that have been shown to help improve your kind of Autonomic Nervous System function. 

Dr. David Putrino

What we’re trying to do is very, ever so slightly, start to nudge the Autonomic Nervous System towards sympathetic activation, without flipping that switch all the way, so that people start to have a very intense heart rate and,  uh, you know, start to sweat and start to hyperventilate and so on and so forth. 

Brittany Thomas (co-host) 

Sympathetic activation just means increased heart rate, blood flow, alertness–all of the things that normally happen when you exercise. Dr. Putrino wants to take people right to the edge of that stress response with gentle exercises. 

Kaelyn

Things like heel slides. So laying on your back and bending your knee and moving it kind of from a straightened position to a bent position and back. And, that to me did not really feel like exercise. But, um, it certainly- it doesn’t work for everyone- but it certainly, personally, helped me, I think  get to the point where I could do more walking and that sort of thing.

Brittany Thomas (co-host) 

Dr. Putrino’s Autonomic Conditioning Therapy begins with several weeks of just breath work. After that: range of motion exercises all while lying on your back. If you’re like Kaelyn, you might be like: “This is exercise? I’m literally lying down”. But Kaelyn’s advice is to “be patient”. Kaelyn has tried a few of these different graded exercise progressions, and when she tried to skip ahead, she really regretted it. 

Kaelyn

I certainly crashed pretty bad from trying to do that protocol. And especially starting in kind of the middle of it rather than the beginning, because I felt like I was in better shape.

Brittany Thomas (co-host) 

But if you stick with the program–go slow and step by step–Autonomic rehab gradually progresses from breath work and heel slides to some light aerobic exercise, also while horizontal. And then, eventually, to upright aerobic stuff. 

Dr. David Putrino

Over time, you can slowly experience some improvements in your Autonomic symptoms with Autonomic rehabilitation. With the understanding that, you’re not just prescribing exercise as a means of treating, deconditioning, or trying to improve cardiovascular fitness. 

Brittany Thomas (co-host) 

Dr. Putrino’s program has other recommendations for managing Long COVID too. Like recognizing and avoiding the most common triggers for Long COVID symptoms: physical and mental exertion, dehydration, weather changes, drinking alcohol, even eating big meals. 

Kaelyn

When I would exert myself physically or mentally or even emotionally, I would have like a, you know, what I described as a crash afterwards where my symptoms would really flare up and I would have to just lay down and basically be kind of incapacitated for, for several hours after the fact. 

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THEORIES

Brittany Thomas (co-host) 

Part of what makes Long COVID seem so mysterious is that it isn’t just one thing. It’s many things. Dr. Putrino told us about a study that looked at thousands of Long COVID patients and cataloged hundreds of different symptoms, in more of less every part of the body.

Dr. David Putrino

They looked at thousands of individuals with Long COVID. They showed that we were seeing over 200 symptoms associated with the diagnosis of Long COVID that affected every single organ system.

Brittany Thomas (co-host) 

So when we say Long COVID, it’s actually just an umbrella term for a number of lingering effects of COVID. The WHO’s definition of Long COVID is that broad. They say Long COVID basically just means that you are feeling worse than before you had COVID. And that you’re still feeling that way 3 months later. 

Dr. David Putrino

They came up with this in a hurry because lots of people were struggling, um, and they didn’t quite know what to do. And so it was a broad definition. Um, and so what it means is that there are many people who have Long COVID, um, for many different reasons.

Brittany Thomas (co-host) 

In Kaelyn’s episode, we focused on Kaelyn’s particular breed of Long COVID, which is a common one. Her Long COVID resembled post-viral conditions like POTS and CFS–Chronic Fatigue Syndrome. POTS and CFS are known for fatigue, heart palpitations, dizziness–and a lot of people with Long COVID report those same symptoms. And in fact, one theory is that long covid is triggering these illnesses we already have names for. 

Kaelyn

There’s kind of this phenotype of Long COVID where it’s basically just the catalyst for these other post-viral illnesses, is the thought, the kind of running theory. So Long COVID is new in some ways, but it’s also not new.

Brittany Thomas (co-host) 

If this theory is right, the good news is that those conditions have been around for a while. They’re known. So we already have a body of research to go off of, and certain protocols for easing some of the symptoms. 

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Brittany Thomas (co-host) 

Another one of the theories that Dr. Putrino told us about had to do with the notorious spike proteins. And how those spike proteins may linger in the body long after you’ve gotten over COVID.

Kaelyn

There’s a theory of viral persistence. So basically pieces of COVID that are stuck in our bodies somehow. 

Dr. David Putrino

A large proportion of individuals with Long COVID had circulating spike proteins through their blood, indicating viral persistence- indicating that the virus was not being adequately cleared from the body. What we see in a situation like this is, is quite often, our immune system, in response to this viral persistence, starts to work very, very hard to, to fight off this infection that it can’t quite clear. Over time, that immune system gets very exhausted. And so then, what starts to happen, um, people start to get opportunistic infections. In addition, what we have is reactivation of previously latent infections that were in their system. So we’re seeing people test positive for Epstein-Barr Virus reactivation and Herpes Virus reactivations. We’re seeing people test positive for Lyme Disease after years of not testing positive for Lyme Disease, but they had it in their past. We’re seeing all of these co-infections starting to emerge, which we think is the product of an exhausted immune system.

Kaelyn

The theory is that, if you’re able to kind of get rid of the excess virus that’s present in our bodies, you might abate some of the symptoms that are going on. So to that end, there’s a couple teams that are trialing Paxlovid, which is that antiviral drug that’s given to people who have more severe COVID cases. They’re trialing 15-day doses of Paxlovid, and the normal dose is 5 days. So they’re trialing these 15-day doses, um, to try and basically, from my understanding, kick the excess virus, um, out of our bodies, or get rid of it. 

Brittany Thomas (co-host) 

Dr. Putrino’s lab is currently investigating two other theories of what might be causing Long COVID. The first is a theory about microclots: tiny blood clots pinballing around the body, damaging the vein and artery walls. 

Kaelyn

Basically, these really tiny blood clots in our bodies that could be causing some of this dysfunction and kind of endothelial damage- you know, damage to your veins and your arteries. 

Brittany Thomas (co-host) 

Kaelyn told us about some experimental anti-coagulant therapies being trialed in Germany that would break up those tiny clots and prevent them from doing any further damage. 

Brittany Thomas (co-host)

The second possible cause of Long COVID that Dr. Putrino’s lab is looking into has to do with the Vagus Nerve. The Vagus Nerve is a long nerve that runs the length of the body and it controls our Autonomic Nervous System. Dr. Putrino says there’s evidence that COVID can make the Vagus Nerve inflamed and result in symptoms that look a lot like Kaelyn’s symptoms. 

Dr. David Putrino

When that gets knocked out of balance, often you can return it back to balance with a combination of medications and drugs, and even in some cases, non-invasive brain stimulation techniques like Vagus Nerve stimulation.

Brittany Thomas (co-host)

Dr. Putrino’s lab is running those trials right now. We’re interested to see what becomes of them, and what other trials and progress can help us better understand Long COVID.

Kaelyn

We really just don’t have enough clinical trials running right now and enough treatment trials running, um, to really try to address some of the, the root causes of, of these issues. Um, a lot of them are focused on symptom management. They’re not really addressing the root cause of the issue. Um, they’re just kind of a band-aid. What most of us want is more treatments that kind of address the root cause of what’s going on.

Robert Pease (co-host)

Yeah well you should really get some med school credit for, uh, the research that you’ve done here. Uh, I think you’re ready for your residency

Kaelyn

*Laughs*

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Kaelyn

The challenge of Long COVID is that, for a lot of us, movement does not make us feel better. It makes us feel worse. It just completely takes everything that you know about movement and completely flips it on its head. It’s a real kind of unlearning process and one that I’m still going through because I still try to push it sometimes because I don’t wanna believe it.

Brittany Thomas (co-host)

It’s important to remember how much we still don’t know about Long COVID. This has a whirlwind tour of some of the current theories and recommendations, but the research and trials are ongoing–they’re happening right now. And most of all, we need to be patient. 

Dr. David Putrino

It’s very important that we don’t rush to any conclusions. What is much more important and much more productive is that we establish centers that start to treat all of these infection-associated complex chronic illnesses together. So that’s what we’re trying to do at our center.

Brittany Thomas (co-host)

That’s it for this bonus episode of My Body Odyssey. I hope you found that useful. I know for me personally, I haven’t been thinking about COVID as much lately–as much as I was– but, after hearing that each time you get it, it can increase your chances of getting Long COVID, I’m hoping for more negative tests. If you want more resources on Long COVID, we’ll put links in the show notes and on our website: mybodyodyssey.com. Kaelyn’s website is Kaelynlynch.com. And the Mount Sinai Center for Post COVID Care is providing new resources all the time from Dr. Putrino and other researchers. So definitely check that out. Thanks for so much for listening and stay tuned for our next episode. I’m Brittany Thomas. My Body Odyssey is a Fluent Knowledge production. Original music by Ryan Adair Rooney.

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