Long COVID Treatment Explained: A Comprehensive Patient Guide

I'm Dr. Michael Brode. I am a general internist and medical director of our Post-COVID-19 program at UT Health Austin, part of the University of Texas Dell Medical School. So today I really want to share my framework for treating

long

COVID and share what's helping our

patient

s get on the road to recovery. Before talking about

treatment

, the first question I always ask myself is what test should I have when I have

long

COVID? And the simple answer is that there is no test for long COVID. When we understand the mechanism that is causing long COVID and can send someone for a lab test to detect it, it will be a medical breakthrough that we don't have yet.

Therefore, there is no MRI, CT scan, or any test that we can do to fully diagnose long COVID. At this point, it's really a question of whether it fits the pattern and whether symptoms actually begin after COVID infection. Generally the symptoms are chronic or neurological fatigue, sometimes with shortness of breath or palpitations. But for now, the basics of diagnosis and testing are really making sure it's not another cause of your symptoms. Diabetes and thyroid problems are still common in the population. So testing is really a bunch of check boxes to make sure it's not something else or that other chronic diseases you may have are well controlled.

Testing, if everything goes back to normal, doesn't mean that what you're going through is normal. It just means it's long COVID, which we can't measure or test. Therefore, there is no one-size-fits-all approach to testing. It's really going to be based on what other medical problems you have, your risk factors based on your age. And I think it's almost a checklist to make sure it's not something else. And a healthy 25-year-old, that will be a short checklist, and an 85-year-old who has heart disease, cancer, and other medical problems. That checklist will be much longer. However, at the end of the day, most

patient

s will need some basic blood work to get started, but otherwise it will be very individualized depending on the symptoms you have.

And if that's shortness of breath, maybe it's getting some lung function tests done. If you have palpitations or a high heart rate, a doctor may take your orthostatic vital signs to look for POTS. Right now, there are some

guide

lines released by the CDC and some physician groups like AAPM&R that you can suggest your doctor review because it will be highly individualized. But severe or atypical symptoms may require more advanced testing. But at the end of the day, more testing isn't always better. And if it's just long COVID, most tests will come back normal. Patients at our clinic, when they arrive, usually have an average of about 18 new symptoms.

So this may require a couple of visits to make sure you get tested and take a good history of all symptoms. However, what we have seen is that usually all new symptoms begin between 6 and 8 weeks after COVID infection. So there's a clear before and after health of people who have fully recovered from their COVID infection and then develop these strange or mysterious symptoms about six months later, that's atypical. And that would make me think that the checklist needs to be much longer to make sure it's not something else before saying it's due to long COVID. Again, I think the key part of

treatment

is, first and foremost, saying that time heals.

We are seeing in our clinic that most, if not all, patients are improving. The real question is how much? That's why research shows that about 60% of patients are completely improving. Most patients experience the majority of their recovery in the first year to two and a half years. For patients requiring long-term COVID treatment in a specialized facility, many times that appears to be if they are at 20% of their initial health. A couple of months after COVID and a year, year and a half later, they can be at 60, 70, 80% of their health. I'll be completely honest, that's not 100%, but it's certainly better than where they started.

And I almost never see patients get progressively worse unless they have another medical illness that's really driving that progression. However, at the end of a year and a half, we are seeing the healing continue to improve, but unfortunately that is when it really starts to plateau and the healing process slows down. And that's why I'm talking to patients who, you know, should probably deal with the symptoms in the short to medium term. We don't yet know what the long-term health effects of long COVID will be, but I'm optimistic because I see many patients getting better. Also, the bad news is that although many of the symptoms go away, the most common symptoms of long COVID are fatigue, brain fog, and post-exertional malaise, which means you do an activity that shouldn't make you tired and it just wears you out. and worsens your symptoms.

These three symptoms are the last to disappear. When that wall, that post-exertional discomfort disappears, everything improves, which really makes me think that it is essential for long COVID. Going right into treatment, I really think about it in four steps. The first is to manage that energy and avoid hitting that wall of post-exertion discomfort. The next focused on intentional rehabilitation that builds on your strengths and adapts to your deficits. The following delves a little deeper into medical management using evidence-based medications and treatments to treat symptoms. And then the last step, which I hope will one day be the first step, is to really look at targeted therapies that directly treat long COVID.

But unfortunately, right now, all of them are purely experimental and we don't know yet if they work for everyone. I think the most fundamental first step in treating COVID is to really manage your energy and what I really have to tell everyone is that that wall of post-exertional malaise is real and there's no way around it. That is the illness of most people. The best advice I give people is not to insist. You have to recognize when your body is sending you 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 pain, or just, you know, not feeling good and not being able to concentrate, that battery is limited.

I really encourage people to be intentional about how they use that battery during the day, take breaks so they can recharge it, and get a good night's sleep. This way it will be as full as possible for the next day. And what we've really seen with long COVID is that 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 passive activities like watching TV or scrolling on your phone can also drain that battery, whether you intend to use it that way or not.

What I see a lot of patients come to me and tell me is that they have good days and bad days, and sometimes that's true, that they can have random changes in their illness. But what really happens to a lot of patients is that they're in this pattern of, you know, they don't feel well, they're fatigued, they're at home, and then one day they wake up and go out. and they do all the activities they want to do because they feel better and they hit that wall. And then they're in this cycle where they experience an accident, the post-exertional malaise they're recovering from at home.

And then as soon as they feel good again, they crash, recover, crash, recover. As soon as you stop hitting the wall and feeling worse, you start to feel better. And again, with that battery, it really matters how you spend it. So I think about it in the four Ps, which are prioritizing the activities you need to do, pacing those activities, planning ahead, and setting aside time to rest and position yourself during those activities so that you're not overexerting yourself. And within that, as soon as people stop having these big up and down energy swings and are able to 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 are usually pleasantly surprised at how much they can get done. If you are intentional and plan accordingly. I also recognize, unfortunately, that for people who have to put food on the table for their families, their work and employment is often the biggest battery drain. Long COVID is considered a disability under the Adults with Disabilities Act. Basically, I think it's important to talk to your employer and get the protections that he needs to be able to fulfill his job duties, maybe that's reduced hours, maybe getting some work accommodations. And once again we are very clear that physical and mental work can be equally exhausting throughout the working day.

So the next step in treatment after really managing that energy is what I call intentional rehabilitation. And it is recognizing once again that physical, mental and emotional effort drains the battery. Intentional rehabilitation is about managing that battery better, leveraging its strengths, and adapting to its deficits in the hopes of pushing that wall further away. I'll be honest, it doesn't cure long COVID, but generally, with professional guidance, people can really tap into their strengths and feel much better. And that can be physical therapy, cognitive therapy, or mental health counseling to focus on all of those things. It's hard to do everything at once, but I recommend people choose what's most important to them or what bothers them the most, focus on that, and then move on to the next thing once they've gotten a little better.

As far as physical rehab or physical therapy, what I recommend for that is, unfortunately, people get into this cycle of deconditioning, you know, where they have long COVID, they're tired, and they're not doing much. They start to lose muscle mass, lose shape and everything starts to snowball and get worse. And you need to break that cycle, but at the same time, avoid hitting that wall. Therefore, exercise, if done incorrectly, will make you feel worse. You will crash into the wall. But if you don't do anything, you will enter that cycle. That's why you need to find the perfect balance between doing enough to rehabilitate him aerobically and cardiovascularly, but not too much.

And for some days, you know, that's almost like walking on a tightrope that sways in the wind. But if done right, it can be really effective in pushing that wall back even further, and a physical therapist or someone trained to help you find an individualized program to meet those rehab needs can be really powerful, especially if you're having trouble doing any activity. physical. activities at all. What we discovered when patients told me is that doing that rehab, that low-impact exercises can be really helpful in avoiding position changes because they put a lot of stress on the body.

Additionally, the type of dehydration and heat can be stressful. So you really want to do any type of exercise under the right conditions. The next one is, you know, cognitive therapy or mental activities, and it's really focused on adapting to your deficit. So how to direct your attention, you know, breaking problems down into smaller tasks, writing lists, intentionally encoding memories, and professionals like speech, language, pathology, and neuropsychology. They can help teach you those techniques and find out exactly what your deficits are. Mental health counseling can really help with anxiety, stress or the pain of going through what for many people is a disabling illness.

And you know that uncontrolled mental health symptoms are a passive drain on your battery. And I think that will always be a foundation for recovery, making sure that that is taken care of. The third step in treatment is what I call symptomatic management, and it actually involves using evidence-based treatments or medications to treat specific symptoms. And now medications aren't for everyone, but we do have evidence-based medications that treat common COVID symptoms, including fatigue, insomnia, migraines, and 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 regain their day-to-day functioning.

And that will be very individualized. We try to choose medications that maybe treat one or two of the most disabling symptoms that people have or use treatments like acupuncture, which have evidence of chronic pain to treat those specific symptoms and can have a big impact. That's a bit of trial and error. Everyone is different in how they react to medications and what doses work best. If your doctor recommends a medication, always askwhat the side effects are, especially avoiding medications that may cause fatigue or sedation as a side effect. If you read the back of the label, all the label says is that fatigue is a side effect and they have to write that.

But your doctor will definitely know which medications commonly have those side effects, and it's worth that conversation. The fourth step in treatment is therapies aimed at patients with long

covid

. And once again, I hope that one day this will be the first step of treatment. But right now all of these targeted therapies remain experimental. And what that means is that we can't say that they work or not because there is no evidence to support them. Therefore, research on long COVID can vary widely. The gold standard is randomized controlled trials from accredited institutions, but the long-running COVID research can also veer toward the opposite extreme, where it is junk science.

And they are trying to sell something. Right now, however, most of the research is at a point where they are just small trials where they have no comparison. So it's hard to say whether that preliminary research will work for every long COVID patient, because the disease may look different in many people or many of the treatment recommendations haven't actually been studied in long COVID. They have just been used in diseases that resemble long COVID, but have not been studied directly in that population. Right now many of the treatments are promising, but we can't say if they will work for everyone.

And it's a bit experimental or trial and error. And I think there are a lot of important voices, especially in online communities, that can be powerful about what other people have tried. But I always give a warning. The loudest voice is not always the right voice and you really have to think about what suits you and your personality before trying an experimental drug. There are categories that are being proposed for specific treatments for long COVID. I think of them in three broad categories. The first theory is that there are viral fragments in the body, so treatments to eradicate the viral fragments, whether antivirals or getting vaccinated multiple times to try to get rid of the viral fragments, are one category.

The second is to treat the chronic inflammation caused by the virus. This may include immune therapies used in other autoimmune disorders such as rheumatoid arthritis, using medications such as IVIG. And there has been a lot of interest in the use of low-dose naltrexone, which can decrease neurological and systemic inflammation and relieve symptoms. Another theory about that inflammation is the potential use of antidepressants to help with neurotransmitters like serotonin. The last category is really treatments to improve blood flow and oxygen utilization. There's some research that shows that, you know, oxygen utilization in long COVID is not efficient like it used to be.

Because of this, some people have proposed therapies like hyperbaric oxygen or mitochondrial supplements to try to improve people's energy and help with fatigue. So if you are interested in trying one of the more targeted therapies, I highly recommend participating in a clinical trial so we can really rigorously know if these treatments work and give back to the Long-

covid

community. So, unfortunately, research opportunities are quite scarce at the moment. Therefore, it will 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 does not interact with your other medications, and what shows the most promise based on current research.

And that will be really individualized with your healthcare provider. However, unfortunately, many of the experimental drugs that are used off-label will likely not be covered by insurance due to their experimental nature. And that could lead to significant out-of-pocket costs to try these things. I will say that the last note on targeted therapies refers to supplements. And I'm not here to say that supplements are good or bad. However, the problem with supplements or natural treatments is that they are less regulated than traditional prescription medications. So they are allowed to make claims that may not be supported by science and they are allowed to market whatever they want.

And so they have a little bit of wiggle room to make promises that may not be based on evidence. And honestly, if all of these things were miracle cures, we'd all be taking them. But what I do suggest, if you are interested in supplements or any other of these treatments, is to try one at a time and decide beforehand what the expected effect of taking that medication will be, how long do I have to take the medication to see that effect. and really judge it at that moment. 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 of them was helpful and which of them may have side effects. Our approach to treating COVID is really based on those four steps. The first is that time and energy management can really make a big difference in people's lives, especially if they are able to manage that battery well and avoid hitting that wall of post-exertion malaise. The next is to engage in intentional rehabilitation, physical, cognitive or emotional rehabilitation to make sure you are using the battery to the best of your ability.

Everything is based on each other. If those steps don't get you where you want, move on to more medical supplies, prescription medications, or other medical treatments to help treat your symptoms. And lastly, use more targeted therapies, which we recommend being part of a clinical trial, but actually having an individualized conversation with your doctor. If they are not available to you immediately. So thank you very much for listening.