#38: My Long COVID Guidelines for Recovery

In this episode of Long COVID, MD, Dr. Zeest Khan shares highlights from her recent Project ECHO webinar, sponsored by the University of Utah and the Bateman Horne Center. Drawing from her personal journey and clinical expertise, she introduces actionable strategies to manage the complex and often overwhelming nature of Long COVID.

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Chapters

• 0:00 Project ECHO
• 1:35 Navigating Clinical Uncertainty in Long COVID
• 3:27 Personalized Approaches to Recovery
• 6:23 Dividing and Conquering Symptom
• 8:58 Focusing on Symptom Management
• 11:27 Trial and Pivot: A New Approach
• 20:48 Setting Realistic Expectations for Treatment
• 24:38 Conclusion and Encouragement

Transcript

Zeest Khan (00:00)
Hello and welcome or welcome back to Long COVID MD. I'm your host, Dr. Zeest Khan. I'm a licensed physician and a certified patient with Long COVID. I'm here to talk to you about ways you can utilize the existing healthcare resources we have to get better. I recently gave a talk to a group of medical professionals. I was invited to a Project Echo

lecture.

Zeest Khan (00:30)
Project Echo is a federally funded program that is aimed at educating primary care providers on specialty topics and subjects.

Zeest Khan (00:42)
It was sponsored by the University of Utah and the Bateman Horne Center. I'm going to leave links to those institutions in the show notes.

Zeest Khan (00:50)
The Bateman Horne Center cares for people with myalgic encephalomyelitis, fibromyalgia, and now long COVID. They are also quite dedicated to medical education because they realize that they simply cannot see all of the patients who would like to be cared for by them.

Zeest Khan (01:10)
I was honored to be invited to share my ideas about Long COVID.

clinical care in an arena or a sphere where we have very few established guidelines and a lot of questions. my presentation was entitled Navigating Clinical Uncertainty in Long COVID. And I wanna talk a little bit about what I spoke about there.

Luckily, it was very well received And so I wanted to share some of the highlights or the most pertinent points to you as a patient that I shared with the medical clinicians.

that I was speaking with on the webinar earlier this month.

The reason I wanted to share this insight with you is that I summarized my approach to recovery in this lecture.

I described the foundation of my recovery and the way that I have tackled this overwhelming problem into bite-sized pieces and how I have collaborated and found to start with.

medical experts to work with me to get better. And I hope that it helps you as well. You may already be implementing some of these processes yourself without even realizing it. And you might hear some ideas that you want to implement in the near future.

So the first point I made was that in the absence of guidelines to take care of a population of people, the millions of us who have long COVID, I recommend getting hyper-focused on the needs of the individual sitting in front of you. How that relates to you as a patient is that

there is a real desire to rely on a source for answers. It's true for clinicians, it's true for patients. As medicine in general moves towards relying on evidence-based research to guide treatment,

we get more uncomfortable with it kind of experimenting or working outside what we consider established standards. But what happens when there are no established standards, as is the case for us with long COVID? We don't have evidence-based research that is wide enough and deep enough.

to support any given treatment for a patient with long COVID. So what I recommend and what I have done myself is dive deep into what my needs are. What are my symptoms? What is bothering me? What is inhibiting my life? What is reducing my function?

and what can I do about those specific problems while we wait for ultimate answers. And so that's the real big point here. We don't have an ultimate answer yet to long COVID. And I wanna be hopeful, but I don't know the timeline that it's going to arrive.

It may be many, many years from now that we develop an ultimate cure to long COVID. In the meantime, I have a life to live and so do you. How do we improve our function and get relief from these horrible symptoms that we're experiencing?

I invite you to limit your search for an ultimate answer and instead reflect inward on what your specific problems are and how you can get relief from each problem.

We are naturally drawn to protocols, a map that is going to lead us to the treasure if we follow the steps very carefully. And some of these protocols that you'll find online have been helpful for particularly the people who quite frankly make them up.

But those protocols likely reflect the steps that that individual person took to tackle the problems that that individual person had. And so what I invite you to do is to reflect yourself and ask, what is bothering me? What is my specific problem?

and how can I get relief from the most urgent problem that I'm facing right now. Which leads me to the second point, divide and conquer. What I did and what really changed the game for my recovery was when I started to approach my symptoms and my body the same way that I approach

the patients I took care of in cardiac surgery who had multiple severe diseases. They often had cerebral issues, had had a stroke or at risk of having a stroke, had cardiac dysfunction, had problems with their kidneys, often had problems with their intestinal system, certainly had problems with peripheral circulation.

and all of those problems are important. And yet in open heart surgery, I had to decide which problem am I going to tackle first? Because if I start getting overwhelmed by all of the complex problems in front of me, I'm not going to take action. I'm going to become paralyzed.

Doing a inventory of your symptoms and prioritizing your symptoms by severity is not easy. And I recommended to the doctors and other clinicians I was speaking to at the Project ECHO webinar to collaborate with their patients to do this prioritizing together.

It's hard enough to do when your brain is working at 100%. It's hard enough to do when you have no body pain. It's hard enough to do when you don't have shortness of breath. It's hard enough to do when you can get out of bed every day. It's much harder when you have debilitating symptoms. And so to be able to partner with someone

having someone be a sounding board that you can talk through your symptoms and make some sense of what is the most pressing problem. When you have that list, which is hard to do,

This is a process that is difficult. None of these recommendations are easy. I recommend digging your heels in. Identify the problem that is most urgent. Dig your heels in. Talk to your doctors about what that problem is. Diagnosing the underlying issues.

and ultimately getting relief. I invite you to separate cure of underlying pathology from symptom relief. I see this a lot online. I see a lot of discussions often from self-titled experts.

What is the ultimate cause or the underlying cause for our symptoms? They can be long and involved conversations and they can be nuanced. They can sound very scientific. I have yet to hear one of these discussions result in clear interventions that can be easily applied.

While we look for a cure, you've got a life to live. And it is okay to focus on symptom management and symptom relief so you can better enjoy your life while the underlying issues are continued to be explored and addressed too.

But by prioritizing our symptoms and saying, okay, for me, I'll share my main, most urgent issue was my shortness of breath when I got sick. My respiratory symptoms were horrific. And I focused on that first and foremost.

so I established with a pulmonologist and an allergy doctor because I couldn't tease out whether this was a lung disease involving the tissues of the lungs or if it was a hyper allergic response like asthma.

and both of these specialists, you know, they have a lot of overlap in these symptoms because the symptoms have a lot of overlap in their etiology. I tried treatments and I kept going back to those same doctors with feedback on how the treatments were working, how well my symptoms were improving and asking what do we do next.

until I was able to breathe easier every day and I was able to lie flat at night and it wasn't interrupting my sleep. By focusing on that shortness of breath and those asthma symptoms, I didn't ignore the other symptoms that were happening. I still had dizziness,

It was still hard for me to walk down a hall or walk from my bed to the bathroom. I was still having confusion. I was still sensitive to light. But I decided what I'm gonna do first is to dive deep into my shortness of breath. By getting treatment for that symptom,

it helped me feel better.

so that I could continue on this ultra marathon that we're on of recovering from long COVID. So prioritize your symptoms, look at the top one, dig your heels into that top one, get some relief. It makes a complex disease like long COVID a little less overwhelming if we can tease it apart.

and utilize the really reliable science that we have in medicine and the really effective treatments for symptoms that currently exist for the symptoms that we have. The point here is for you to feel better, for you to live a more satisfying life with less pain and less strife.

It's easy to get overwhelmed when you have a million symptoms, or at least it feels like we have a million symptoms. So sit down, reflect on what your symptoms are, reflect on the extent to which each symptom is bothering you, identify the one or two that are bothering you the most, and then go after that one.

If Long COVID is a big spiderweb, I'm asking you to just pay attention to one corner.

This is okay. Allow yourself to focus on one part of this big puzzle. It will help you. So if this is difficult to do on your own, try to find someone to collaborate with. Ideally, it's a doctor to do this with, but I have gotten benefit from talking.

with friends and I recognize a lot more of my friends are doctors than maybe your friends. And so we have really similar ways to think through organ system diseases. But talking with my husband has been really helpful and getting his input as my caregiver. His input was invaluable because he was able to tell me, this is what I'm noticing.

is troubling you the most. That was super, super helpful. And then allowing yourself to let go of understanding what is happening from your COVID infection that led to this. It's okay to let that go for a little bit.

principally because it's gonna be hard to find those answers. We just don't have enough information right now.

In tandem with that, I invite you to be okay focusing on finding answers to each problem that is affecting you. Remember that this is a little bit of uncharted territory and

It's gonna take the scientific community and governmental agencies a long time to find the answer and the cure to long COVID.

I suggest you focus on yourself and your most pressing needs and let those needs guide your treatment and lead you to your answers.

So what happens along the journey to finding your answers? Once you have identified which symptoms bother you the most, we still don't have clear guidelines or guarantees that your symptoms are going to be straightforward to treat.

But there is a lot of hope and we do in medicine have a lot of resources. Remember, if you are living in the US or another developed country, we have a very powerful healthcare system. We have a lot of medical treatments and interventions, drugs and otherwise, that we can utilize potentially.

So how do we get to our answers? We do this with trial and not error, but trial and pivoting. what has worked for me and what I have learned has worked for clinicians who have been caring for people with ME for a long, time.

is the expectation of a long process of trying different interventions. So we can call this trial and error, and I referred to it as trial and error in my presentation. And after I spoke with one of the doctors at Bateman Horne, I also used in my webinar the word pivot, and she...

shared with me and she's like, I really resonated with that. And I think you should call this approach trial and pivot because that's what I'm gonna now call it because that's what we've been doing. Trial and error is a really inefficient way to treat disease. And yet for most of us, it is the only method.

that we really have. And so we should embrace that. when we start a treatment, we approach it with curiosity.

One of the benefits of working with a medical professional is that you can together

understand what is the actual indication for the use of this trial treatment. How long is it gonna take before I see results? What are the results or the change that I am anticipating or wanting from this treatment? What side effects

are possible with this and would make me stop taking it. Be very clear with that intention at the very beginning and then once you start the treatment, you can use those as markers of benefit. I recommend

thinking about treatments as beneficial or not beneficial instead of successful and failures. Words are really important and they set our expectations up appropriately. It is exhausting.

to get our hopes way up, try a treatment that we think is gonna cure us, and then when it doesn't cure us, we get so disappointed and discouraged. Let's set our intention from the start that this is gonna be a long process, that it is going to require us to trial treatments and pivot after we get the input from

that treatment. So you try a treatment, you assess how that treatment affected you, and you use that information as data to lead your next step.

Again, it's probably clear that collaboration with someone can be so helpful as I talk about this process. Try and pivot, brainstorm, and stay enthusiastic. I know it is discouraging for us as patients when we don't get the response that we're looking for. It's also really discouraging to doctors to

keep feeling like they're failing you. And so I invited the doctors I was speaking with as I invite you to restructure our expectations and go into this expecting a journey, expecting a process and using results as feedback and data points.

So as we wind down here, I'll summarize my main points.

The first is that When we don't have guidelines for the group of people with long COVID, it is best to get hyper-personalized with your needs.

and Let those needs guide your treatment.

Two, reflect on your symptoms. Prioritize your most pressing needs, which is very difficult when you have multiple needs and can be easily overwhelmed. Simplify your overwhelming experience by focusing on one aspect of that experience.

set boundaries and goals to say, I'm gonna dig my heels into this symptom and I'm going to get relief from this symptom. I'm going to continue to pay attention to it until one, I get relief or two, another symptom becomes the priority or overtakes it. Once you get relief from your top symptom,

go to the next one and repeat the process. So three, speaking of process, recognize what the process of getting treatment for long COVID is. It is going to take time. It is trial and pivot. We are okay not focusing on underlying

answers for that makes sense of the whole puzzle and instead we're going to focus on a piece of the puzzle at a time. We are going to try things with intention, with safety as the priority.

We're gonna define benefit of the treatment, what makes this treatment worthwhile, what makes this treatment not worth continuing, and that could be detrimental side effects. What is tolerable to you? What is beneficial for you? Get hyper-personalized

and start thinking of treatments as beneficial or not beneficial instead of curative and failures. You didn't fail a treatment, treatment didn't fail you, it wasn't right for you. And that guides your next step.

I have been ill with long COVID since 2020 before I even wanted to admit that I was very sick. It is likely that I have a presentation of the disease that kind of sets me up for a really long chronic course of it, but I have made tremendous progress. And the way I have done that was by turning this

complex issue into one that I can tackle piece by piece. I invite you to do the same. I invite you to search for collaborators. I invite you to consider long COVID a process instead of an obstacle that has a definitive start and end point.

These are hard things to accept. They are possibly even harder to implement, but it is possible. And by doing this or following these recommendations, I think you're going to be able to utilize the resources that your healthcare plan probably offers you in a way that benefits you the most.

I continue to be dedicated to this cause. I continue to promise you that I want to offer you as much help in this process as I can. And I'm really wishing you the best in rooting for you. There are answers. It might not be the ultimate answer. It might not be the answer to the underlying problem. It might not be cure with a capital C.

but we have got a life to live and I want you to enjoy as much of your life as you possibly can and there are ways to do this.

So these messages that I shared were received very well by medical professionals. And I wonder how you're receiving them, whether you're a medical professional or not. You can reach me at longcovidmd at gmail.com. Be sure to subscribe, follow, like, share, all of those things. You can find me on Substack at longcovidmd.substack.com.

I'm wishing you the very best. I'm wishing you enthusiasm. I'm wishing you determination. I am sending you patience. We are going to get through this. We are going to feel better. Until next time, take good care of yourselves and bye for now.