Long COVID Treatment Explained: A Comprehensive Patient Guide

Video Statistics and Information

Video
Captions Word Cloud
Reddit Comments
Captions
I'm Dr. Michael Brode. I'm a general internist doctor and Medical Director of our Post-COVID-19 program at UT Health Austin, which is part of Dell Medical School at the University of Texas. And so today, I really want to share my framework for treating long COVID and share what's helping our patients get on the path to recovery. Before talking about treatment, the first question I always get is what test should I get when I have long COVID? And the simple answer is there is no test for long COVID. When we understand the mechanism of what is causing long COVID and can send someone for a lab test for that, that is going to be a medical breakthrough that we don't have yet. And so there's no MRI, CT scan, or any test that we can do to fully diagnose long COVID. At this point, it's really whether it fits the pattern and the symptoms really start after the COVID infection. Usually the symptoms being chronic fatigue or neurologic, sometimes with shortness of breath or palpitations. But for now, you know, the fundamentals of diagnosis and testing are really making sure it's not another cause of the symptoms. Diabetes, thyroid problems are still common in the population. And so the testing is really a bunch of checkboxes to make sure it's not something else or that the other chronic illnesses that you may have are well controlled. The testing, if it all comes back normal, it doesn't mean what you're going through is normal. It just means it's long COVID, which we can't measure or test for. And so there's not a one size fits all approach to testing. It's really going to be based on your other medical problems you have, your risk factors based on your age. And I think about it is almost a checklist to make sure it's not something else. And a 25 year old healthy person, that's going to be a short checklist and a 85 year old person who has heart disease, cancer, other medical problems. That checklist is going to be a lot longer. At the end of the day, though, most patients are going to need some basic blood work to start, but otherwise it's going to be really highly individualized based on what symptoms you have. And so if that's shortness of breath, maybe that's getting some lung function tests. If it's having palpitations or high heart rate, maybe that's having a doctor take your orthostatic vital signs to look for POTS. Right now, there is some published guidance from the CDC and some doctors groups like AAPM&R that you can suggest your doctor review because it's going to be highly individualized. But the severe or atypical symptoms may require some more advanced testing. But at the end of the day, more testing is not always better. And if it's just long COVID, most of the tests are going to come back normal. Patients in our clinic, when they arrive, they usually have about 18 new symptoms on average. So this may take a couple of visits to make sure the testing and take a good history of all the symptoms. You know, what we have seen, though, is that usually all the new symptoms start within about 6 to 8 weeks of the COVID infection. And so there's a clear before and after health for people who fully recovered from their COVID infection and then develop these weird or mysterious symptoms about six months later, that's atypical. And that would make me think the checklist needs to be a lot longer to make sure it's not something else before saying it's due to long COVID. Once again, I think the fundamental part of treatment is to, first of all, say that time is healing. We are seeing in our clinic that most, if not all, patients are getting better. The real question is how much? And so the research shows that about 60% of patients are fully getting better. Most patients are having the bulk of their recovery in the first year or two year and a half. For patients who require long COVID treatment at a specialized center, you know, what a lot of times that looks like is if they're 20% of their baseline health. A couple of months after COVID and a year, year and a half later, they may be at 60, 70, 80% of their health. I'll be fully honest, that's not 100%, but that is certainly better than where they started. And I'm almost never seeing patients get progressively worse unless they have another medical illness that is really driving that progression. At the end of a year and a half, though, we are seeing that the healing does continue to improve, but unfortunately that's when it really starts to plateau and the healing process slows. And that's why I'm having the conversation with patients that, you know, you should be probably going to be dealing with the symptoms in the near and medium term. We don't yet know what the long term health effects of long COVID are going to be, but I'm optimistic because I'm seeing a lot of patients get better. Also, the bad news is that although many of the symptoms go away, the most common symptoms of long COVID, the fatigue, brain fog and post exertional malaise, meaning you do an activity that should not be tiring and it just wears you out and it makes your symptoms worse. Those three symptoms are the last ones to go away. When that wall, that post exertional malaise goes away, that everything gets better, which really makes me think it's fundamental to long COVID. Getting into the treatment directly, I really think about it in four steps. The first being managing that energy and avoiding hitting that wall of post exertional malaise. The next focused on intentional rehabilitation that's building on your strengths, accommodating your deficits. The next gets a little bit into the more medical management using medications and evidence based treatments to treat symptoms. And then the last step, which I hope would be the first step one day, is really looking at the targeted therapies that treat long COVID directly. But unfortunately, at this time, all of those are purely experimental and we don't know if they work for everyone yet. I think the most fundamental and first step of treating COVID is really managing energy and the part I really have to tell everyone is that wall of post exertional malaise is real and there's no way around it. That is the illness for most people. The best advice I give people is don't push through. You've got to recognize when your body is sending you the signals that you are running out of energy and approaching that wall. For some people, that's feeling short of breath, having a higher heart rate, feeling achy or just, you know, not feeling with it and not being able to concentrate, that battery is limited. I really encourage people to be intentional about how they use that battery throughout the day, take breaks to be able to recharge it and get good sleep at night. So it's as full as it can be for the next day. And what we've really seen with long COVID is that both physical, mental or even emotional exertion can drain that battery. So it's very important how you use the battery for all those activities and even to passive activities like watching TV or scrolling through the phone can also drain that battery, whether you intend to use it that way or not. What I see a lot of patients come in and tell me is that they have good days and bad days, and sometimes that's true that they can randomly have, you know, changes in their illness. But what a lot of patients are actually happening is they're in this pattern of, you know, they're not feeling well, they're fatigued, they're at home, and then they wake up one day and they go out and do all the activities that they want to do because they feel better and they crash into that wall. And so they're in this cycle where they crash experience, post exertional malaise are at home recovering. And then as soon as they feel good again, they crash, recover, crash, recover. As soon as you stop crashing into the wall and making yourself feel worse, you start to feel better. And once again, with that battery, it really becomes important about how you spend it. And so I think about it in the four P’s that's prioritizing the activities that you need to do, pacing yourself through those activities, really planning ahead and building in time for rest and positioning yourself throughout those activities so that it's not going to overexert yourself. And within that, as soon as people stop having these large up and down swings of energy and can kind of live in this zone and moderate it, they can't do all the activities that they used to do before. But if they manage their energy well, they're usually very pleasantly surprised how much they can do. If they're intentional and plan accordingly. I also recognize, unfortunately, that for people who have to put food on the table for their families, that their job and employment is usually the biggest drain on their battery. Long COVID is considered a disability under the Adults with Disabilities Act. So fundamentally, I do think it is important talking with your employer and getting the protections you need to be able to fulfill your work duties, maybe that is reduced hours, maybe that is getting some work accommodations. And it is very clear to us once again that physical and mental labor can be just as taxing throughout the work day. So the next step in treatment after really managing that energy is what I call intentional rehabilitation. And it's once again recognizing that physical, mental and emotional exertion drains the battery. The intentional rehabilitation is all about managing that battery better, building on your strengths, accommodating your deficits with the hope of pushing that wall further away. I'll be honest, it doesn't cure long COVID, but usually under professional guidance, people can really build on their strengths and feel a lot better. And that can either be physical therapy, cognitive therapy, or mental health counseling to focus on all of those things. It's hard to do all at once, but I do recommend people pick and choose what is most important to them or what is bothering them the most, and focus on that and then move to the next thing once they've improved a little bit. Looking at, you know, physical rehabilitation or physical therapy and what I recommend for that is unfortunately, people get in this cycle of deconditioning, you know, where they have long COVID, they're tired, they're not doing much. They start to lose muscle mass, get out of shape, and it starts to snowball and get worse. And you need to break that cycle, but at the same time, avoid hitting that wall. And so exercise, if done incorrectly, will make you feel worse. You will hit the wall. But if you don't do anything, you'll get into that cycle. And so you need to find this perfect balance of doing enough that rehabilitates you aerobically and cardiovascularly, but not too much. And for some days, you know, that's almost like walking a tightrope that swinging in the wind. But if done well, it can be really effective at pushing that wall farther away and a physical therapist or someone trained and helping you find an individualized program to meet those rehabilitation needs can be really powerful, especially if you're having trouble doing any physical activities at all. What we found from patients telling me is that doing that rehabilitation, that low impact exercises can be really helpful in avoiding changes in position because they're big stress on the body. Also, kind of dehydration and heat can be a stress. So you really want to do any sort of exercises under the right conditions. The next one is, you know, cognitive therapy or mental activities, and that is really focused on accommodating your deficit. So how to direct your attention, you know, break problems into smaller tasks, write lists, intentionally encode memories, and professionals like speech, language, pathology, neuropsychology. They can help teach those techniques and find exactly what your deficits are. Mental health counseling can really help with anxiety, stress, or dealing with the grief from going through what for many people is a disabling illness. And you know that uncontrolled mental health symptoms are a passive drain on the battery. And I do think that is always going to be a foundation for recovery, making sure that's taken care of. The third step in treatment is what I call symptomatic management, and that's really using evidence based treatments or medication to treat specific symptoms. And now medications not be for everyone, but we do have evidence based medications that treat the common symptoms of COVID, including fatigue, insomnia, migraines, nerve pain. And what we do is they don't cure long COVID, but for some people they can be really impactful and help them get back their functioning day to day. And so that's going to be highly individualized. We try to choose medications that maybe treat one or two of the most disabling symptoms people have or using treatments like acupuncture, which have evidence for chronic pain to treat those specific symptoms and they can be highly impactful. That's a little bit of trial and error. Everybody's different in how they react to medication and what doses work the best. If your doctor is recommending a medication, you always ask what the side effects are, especially avoiding medications that can cause fatigue or sedation as a side effect. If you read the back of the label, everything all label is going to say Fatigue is a side effect and they have to write that. But your doctor is definitely going to know which medications commonly have those side effects, and it's worth that conversation. Fourth step in treatment is targeted long-covid therapies. And once again, I hope one day this is going to be the first step in treatment. But right now all of these targeted therapies remain experimental. And what that means is we cannot say they work or not because there's no evidence to support them. And so the research in long COVID can vary widely. The gold standard are randomized controlled trials from reputable institutions, but the long COVID research can also vary to the opposite end, where that is junk science. And they're trying to sell something. Right now, though, most of the research is at the point where they're just small trials where they don't have a comparison. So it's hard to say if those preliminary research is going to work for every single patient with long COVID, because the disease can look different in a lot of people or a lot of the recommendations for treatments actually haven't been studied in long COVID. They've just been used in illnesses that look similar to long COVID, but haven't been studied directly in that population. Right now a lot of the treatments are promising, but we can't say whether they're going to work for everyone. And it's a little bit experimental or trial and error. And I do think there's a lot of important voices out there, especially on online communities, that can be powerful about what other people have tried. But I do always give a warning. The loudest voice is not always the correct voice and really have to think about what fits you and your personality before trying an experimental medication. There are categories that are being proposed for targeted treatments for long COVID. I think about them in three big categories. The first theory is that there are viral fragments in the body, and so treatments about eradicating the viral fragments, whether that's antivirals or taking the vaccine multiple times to try to get rid of the viral fragments is one category. The second is treating the chronic inflammation from the virus. This may include immunologic therapies that are used in other autoimmune disorders like rheumatoid arthritis, using medications like IVIG. And there's been a lot of interest in using low dose naltrexone, which may decrease neurologic and systemic inflammation and help symptoms. Another theory on that inflammation is potentially using antidepressants to help with the neurotransmitters like serotonin. The last category is really treatments to improve blood flow and oxygen utilization. There is some research that shows that, you know, the oxygen utilization in long COVID is not efficient, as it used to be. And so some people have put forward therapies like hyperbaric oxygen or mitochondrial supplements to try to improve people's energy and help the fatigue. So if you are interested in trying one of the more targeted therapies, I do highly recommend that you participate in a clinical trial so we can really know in a rigorous way whether these treatments work and give back to the Long-covid community. So research opportunities unfortunately, are pretty rare right now. So it's going to be important to have an in-depth conversation with your doctor if you want to try one of these treatments about what is safe, what doesn't interact with your other medications, and what the current research says is most promising. And that's going to be really individualized with your health care provider. Unfortunately, though, many of the experimental medications that are used off label probably will not be covered by insurance because of their experimental nature. And so that could lead to significant out-of-pocket costs to try these things. I will say the last note about the targeted therapies is talking about supplements. And I'm not here to say that supplements are either good or bad. The thing with supplements or natural treatments, though, is that they are less regulated than traditional prescription medications. So they're allowed to make claims that may not be backed by science and they're allowed to market what they want. And so they have a little bit of leeway making promises that may not be evidence based. And honestly, if all of these things were miracle cures, we'd all be taking them. But what I do suggest, if you're interested for supplements or any other of these treatments, is just trying one at a time and deciding beforehand what the expected effect of taking that medication is going to be, how long you're going to have to take the medication to see that effect and really judge it at that time point. If it works, keep taking it. If it doesn't work, stop taking it. I really recommend people avoid starting ten things at once because then it becomes impossible to determine which one of those was helpful and which one of those may have side effects. Our approach to treating COVID is really in those four steps. The first is that time and energy management can really make a huge difference in people's lives, especially if they're able to manage that battery well and avoid hitting that wall of post exertional malaise. The next is being involved in intentional rehabilitation, physical cognitive or emotional rehabilitation to make sure you're using the battery the best you can. It all builds on each other. If those steps aren't getting to where you want to be moving into more of the medical parts, prescription medication or other medical treatments to help treat the symptoms. And then lastly, using more of the targeted therapies, which we encourage being part of a clinical trial, but really having an individualized conversation with your doctor. If those aren't available to you immediately. So thank you so much for listening.
Info
Channel: UT Health Austin
Views: 12,410
Rating: undefined out of 5
Keywords:
Id: DwG04FDMc2Y
Channel Id: undefined
Length: 19min 29sec (1169 seconds)
Published: Wed Dec 20 2023
Related Videos
Note
Please note that this website is currently a work in progress! Lots of interesting data and statistics to come.