Long COVID Treatment Explained

“The simple answer is there is no test for long COVID,” says Dr. Brode. “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.”

“There’s no MRI, CT scan, or any test that we can do to fully diagnose long COVID,” explains Dr. Brode. “At this point, it’s really whether it fits the pattern and if the symptoms really start after the COVID infection.”

Symptoms associated with long COVID may include:

• Chronic fatigue
• Heart palpitations
• Neurologic symptoms
• Shortness of breath

“For now, the fundamentals of diagnosis and testing are really making sure there’s not another cause of the symptoms,” adds Dr. Brode. “Diabetes and thyroid problems are still common in the population, 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.”

“If the testing all comes back normal, it doesn’t mean what you’re going through is normal,” notes Dr. Brode. “It just means it’s long COVID, which we can’t measure or test for.”

Explore frequently asked questions about long COVID.

<br>”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, and your risk factors based on your age,” continues Dr. Brode. “I think about it as almost a checklist to make sure it’s not something else. For a 25-year-old healthy person, that’s going to be a short checklist. For an 85-year-old person who has heart disease, cancer, or other medical problems, that checklist is going to be a lot longer.”

“At the end of the day, 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,” says Dr. Brode.

Additional tests may include:

• Lung function tests for patients experiencing shortness of breath
• Orthostatic vital sign measurement for patients with heart palpitations or a high heart rate to test for postural orthostatic tachycardia syndrome (POTS)

“Right now, there is some published guidance from the Centers for Disease Control and Prevention (CDC) and some doctors groups like the American Academy of Physical Medicine and Rehabilitation (AAPM&R) that you can suggest your doctor review because it’s going to be highly individualized,” says Dr. Brode. “The severe or atypical symptoms may require some more advanced testing.”

“At the end of the day, more testing is not always better,” warns Dr. Brode. “If it’s just long COVID, most of the tests are going to come back normal.”

“When patients arrive in our clinic, they usually have about 18 new symptoms on average,” shares Dr. Brode. “It this may take a couple of visits to complete the testing and take a good history of all the symptoms.”

“Usually, all the new symptoms start within about 6 to 8 weeks of the COVID infection,” explains Dr. Brode. “There’s a clear before and after effect on their health.”

Dr. Brode notes that some patients report symptoms several months after their initial COVID infection, making their condition harder to attribute to long COVID.

“For people who fully recovered from their COVID infection and then develop these weird or mysterious symptoms about six months later, that’s atypical,” says Dr. Brode. “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.”

“Time is healing. We are seeing in our clinic that most, if not all, patients are getting better,” observes Dr. Brode. “The real question is how much?”

“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,” notes Dr. Brode.

“For patients who require long COVID treatment at a specialized center, if they are at 20% of their baseline health couple of months after COVID, by a year or a year and a half later, they may be at 60, 70, 80% of their health,” says Dr. Brode. ” That’s not 100%, but that is certainly better than where they started.”

“I’m almost never seeing patients get progressively worse unless they have another medical illness that is driving that progression,” adds Dr. Brode.

“At the end of a year and a half, 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,” continues Dr. Brode. “That’s why I’m having the conversation with patients that they will probably 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,” says Dr. Brode. “The bad news is that although many of the symptoms go away, the most common symptoms of long COVID are the last ones to go away.”

The most common and persistent symptoms of long COVID:

• Brain fog
• Fatigue
• Post-exertional malaise, in which activities that are not normally tiring require a lot of energy, which can worsen other symptoms

“When post-exertional malaise goes away, everything gets better, which really makes me think it’s fundamental to long COVID,” notes Dr. Brode.

According to Dr. Brode, long COVID treatment involves four components.

1. Energy Management

“The most fundamental and first step of treating COVID is managing energy,” says Dr. Brode. “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,” continues Dr. Brode. “For some people, that’s feeling short of breath, having a higher heart rate, feeling achy or just not feeling with it and not being able to concentrate.”

A patient’s energy levels are similar to a battery with a limited amount of power. “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,” advises Dr. Brode.

“With long COVID, physical, mental, or even emotional exertion can drain that battery, so it’s very important how you use the battery for all those activities,” warns Dr. Brode. “Even too 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.”

“A lot of patients come in and tell me that they have good days and bad days. Sometimes it’s true that they can randomly have, you know, changes in their illness,” observes Dr. Brode. “But a lot of patients are actually is they’re this pattern of 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.”

“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,” says Dr. Brode. “As soon as you stop crashing into the wall and making yourself feel worse, you start to feel better. With that battery, it really becomes important how you spend it.”

The “four Ps” of energy management:

• Prioritizing activities you need to do
• Pacing yourself as you complete those activities
• Planning time to rest
• Positioning yourself to avoid overexertion

“As soon as people stop having these large up and down swings of energy and can 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,” says Dr. Brode.

“Unfortunately for people who have to put food on the table for their families, their job and employment is usually the biggest drain on their battery,” notes Dr. Brode. “Long COVID is considered a disability under the Adults with Disabilities Act.”

“It is important to talk with your employer and get the protections you need to be able to fulfill your work duties,” says Dr. Brode. “Maybe that is reduced hours, maybe that is getting some work accommodations. Physical and mental labor can be just as taxing throughout the work day.”

Learn more about managing chronic illness in the workplace.

<br>2. Intentional Rehabilitation

“The next step in treatment after really managing that energy is what I call intentional rehabilitation,” says Dr. Brode.”Intentional rehabilitation is all about managing that battery better, building on your strengths, and accommodating your deficits with the hope of pushing that wall of post-exertional malaise further away.”

“It doesn’t cure long COVID, but usually under professional guidance, people can really build on their strengths and feel a lot better,” adds Dr. Brode.

Intentional therapy may include a combination of physical therapy, cognitive therapy, or mental health treatment. This may seem like a lot to manage, but patients can choose how to proceed with rehabilitation based on their own needs and goals.

“I 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,” says Dr. Brode.

Physical Therapy

“Unfortunately, people get in this cycle of deconditioning 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,” notes Dr. Brode.

“You need to break that cycle, but at the same time, avoid hitting that wall,” continues Dr. Brode. “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.”

“You need to find this perfect balance of doing enough that rehabilitates you aerobically and cardiovascularly, but not too much. Some days, it’s almost like walking a tightrope that swinging in the wind,” acknowledges Dr. Brode. “But if done well, it can be really effective at pushing that wall farther away.”

Professional support can help patients with this balancing act. “A physical therapist or someone trained in 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,” says Dr. Brode.

“Low impact exercises can be really helpful in avoiding changes in position because they’re big stress on the body,” adds Dr. Brode. “Also, dehydration and heat can be a stress, so you really want to do any sort of exercises under the right conditions.”

Cognitive Therapy

“Cognitive therapy or mental activities are really focused on accommodating your deficits,” explains Dr. Brode.

Cognitive skills that can be strengthened through training include:

• Breaking down problems into smaller tasks
• Encoding memories
• Focusing attention
• Writing lists

“Professionals in speech, language, pathology or neuropsychology can help teach those techniques and find exactly what your deficits are,” says Dr. Brode.

Mental Health Treatment

“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,” notes Dr. Brode. “Uncontrolled mental health symptoms are a passive drain on the battery.”

“That is always going to be a foundation for recovery, making sure mental health needs are taken care of,” adds Dr. Brode.

3. Symptomatic Management

“Symptomatic management is using evidence-based treatments or medication to treat specific symptoms,” explains Dr. Brode.

“Medications may not be for everyone, but we do have evidence based medications that treat the common symptoms of long COVID, including fatigue, insomnia, migraines, and nerve pain,” shares Dr. Brode. “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.”

Symptomatic treatment can look different for each patient. “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,” notes Dr. Brode.

“That’s a little bit of trial and error,” adds Dr. Brode. “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,” advises Dr. Brode. “If you read the back of the label, all labels are 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.”

4. Targeted Therapies

“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,” says Dr. Brode. “At this time, all of those are purely experimental and we don’t know if they work for everyone yet. We cannot say they work or not because there’s no evidence to support them.”

“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 it is junk science and they’re trying to sell something,” warns Dr. Brode.

“Right now, though, most of the research is small trials where they don’t have a comparison,” notes Dr. Brode. “It’s hard to say if this preliminary research is going to work for every single patient with long COVID, because the disease can look different in a lot of people.”

“A lot of the recommendations for treatments actually haven’t been studied in long COVID,” adds Dr. Brode. “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,” continues Dr. Brode. “It’s a little bit experimental or trial and error.”

“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,” shares Dr. Brode.

Potential targeted therapies for long COVID tend to work in one of three ways: eliminating viral fragments from the body, alleviating chronic inflammation, or improving blood flow.

Eradicating Viral Fragments

In long COVID, fragments of the COVID-19 virus linger in the body. Potential treatments which target these fragments include antiviral medications or additional doses of the COVID-19 vaccine.

Treating Inflammation Directly

“Treating the chronic inflammation from the virus may include immunologic therapies that are used in other autoimmune disorders like rheumatoid arthritis, using medications like IVIG,” notes Dr. Brode.

“There’s been a lot of interest in using low dose naltrexone, which may decrease neurologic and systemic inflammation and help symptoms,” adds Dr. Brode. “Another theory on that inflammation is potentially using antidepressants to help with the neurotransmitters like serotonin.

Improving 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,” explains Dr. Brode. “Some people have put forward therapies like hyperbaric oxygen or mitochondrial supplements to try to improve people’s energy and help the fatigue.”

“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,” says Dr. Brode

“Research opportunities 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,” shares Dr. Brode.

“Unfortunately, any of the experimental medications that are used off-label probably will not be covered by insurance because of their experimental nature,” warns Dr. Brode. “That could lead to significant out-of-pocket costs to try these things.”

While supplements may seem like an attractive way to manage symptoms, it is important to evaluate the health claims associated with these products carefully. “Supplements and natural treatments 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,” cautions Dr. Brode. “They have a little bit of leeway making promises that may not be evidence-based.”

“I suggest trying one supplement 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,” says Dr. Brode. “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,” adds Dr. Brode.