Long Covid, MD
Explore paths to Long Covid recovery with Dr Zeest Khan, a Stanford-trained physician who is battling the disease herself. On “Long Covid, MD” she translates complex medical research into actionable steps for meaningful recovery. Dr Khan empowers patients with science-backed insights, demystifies the health care system, and shares her personal journey navigating new limitations. Whether you or a loved one has Long Covid, tune in to gain clarity and learn tools to maintain a meaningful life after diagnosis. Discover hope, understanding and resilience on every episode of Long Covid, MD.
Long Covid, MD
#44: What Makes a Medical Visit Worthwhile?
Buy Me A Coffee
In this episode of Long Covid MD, Dr. Zeest Khan shares audio from her recent Substack Live event. How can you tell if a medical appointment or treatment is helpful or if it's doing more harm than good? Dr Khan shares insights from her personal journey with Long COVID and answers questions from the group. Together, they discuss the complexities of navigating the healthcare system. Dr Khan emphasizes the importance of intentionality in medical appointments, the need for patient empowerment, and the significance of having a primary care provider as a home base. The conversation also covers the challenges of managing multiple appointments, the importance of clear communication with healthcare providers, and strategies for ensuring accurate medical documentation.
Subscribe for more at LongCovidMD.substack.com, and follow Dr Khan on X @doctor_zeest
Zeest Khan (00:01)
Hello and welcome back to Long COVID MD. I'm Dr. Zeest Khan and today's episode is a special one. I'm sharing a recording from the recent live stream that I did earlier this week. The topic was what makes a medical appointment valuable? When does it cost more energy than it's worth? When does it do more harm than good? I was joined by a bunch of subscribers over on the sub stack.
And not only did I talk about my own experiences, I answered questions from the group, those who joined me live and those who had messaged me earlier as well. It is a really fun experience and a way for us to connect with one another. So I invite you to join us for the next Substack Live. It is tentatively planned for Friday, April 25th at 9 a.m. Pacific time.
I say tentative because you know everything is tentative when you've got long COVID, but I'm looking forward to it. You can subscribe for free over at Substack. I'll leave the link in the show notes below. You also have an option to upgrade to a paid membership to just support the platform and keep all of this information free and visible.
Now more than ever it's important to keep information about COVID-19 and long COVID visible, open, and accessible. that's what I hope to do.
and your support helps with that effort.
If you're not interested in Substack, that's totally fine too.
I'm also leaving a link to my buy me a coffee page. You can leave a one time or recurring donation there of any amount you feel comfortable with.
So without further ado, you can listen in on our Substack livestream and I hope you're feeling pretty well. I'll talk to you again soon, but bye for now.
Zeest Khan (01:57)
Welcome to Long COVID MD, Substack Live. It is Tuesday, March 25th, and I am Dr. Zeest Khan. If you're new to this platform and new to me, I am a physician here in California who got really ill in 2020 after taking care of patients at the beginning of the pandemic. And I became totally disabled by what turns out to be Long COVID.
I spent nearly a year bedbound and now that I have a little bit more energy and my recovery is going pretty well, I wanted to share what has worked for me and my new view on the medical system. I spent 10 years as an attending physician or almost 10 years. missed my anniversary because of long COVID.
And I've been away from clinical practice, unfortunately, since 2021, but I'm still a doctor. And that's why I called this platform LogCovid MD, because my whole life became centered around my condition. And I wanted to share some of the ways that I have navigated the healthcare system, because not everybody knows the inner workings of the way that
our healthcare system works. A lot of us don't even know the big picture. So that's what Long COVID MD is all about. And on this Substack Live, I wanted to talk about what makes a medical appointment valuable. But before we get started, hi Annie, please, if you are joining the chat, let me know where you are joining me from.
what maybe your status is, if you are a patient, if you are an ally, if you are a care partner, if you are a clinician who is seeing people with long COVID come into the office or in my case into the operating room, I'm an anesthesiologist. Diane, thank you for joining. I'm going to have to just take a moment here and take a deep breath.
I know some of you are new to Substack and Substack Live. I am too. So my intention today is to be honest, share some information that hopefully is helpful to you and let you guys tell me what you really need. Michael, Michael, Michael Sieverts from Virginia. It's so nice to see you. Lisa, hello.
I'm going to scroll through these comments here. Doug Stack, hi. Doug has been a reader and maybe a podcast listener. Doug emailed me a while ago and he was actually the inspiration for the first Substack Live.
So I'm glad to see that you're here today. I know you actually missed the first one because I did it kind of spontaneously. Annie, nice to see you.
Theresa, Bella, I'm glad that you got on. I saw your comment in the chat. Liz from Baltimore who has post-lime or long Lyme someone's here from Chicago. I'm sorry, I missed that. Lynn, I went to medical school in Chicago, got to spend five years there and met my husband there too.
So Chicago plays a very special role in my life. I have my laptop in front of me and I'm gonna put my glasses on, my eyes. I took some notes. The way this live is gonna go is I'm gonna talk a little bit and I'm going to refer to you guys if you have questions and try to answer those.
Feel free to leave a question in the chat. I will take some breaks through this to review some of those questions and answer whatever comes up. And at the end, we'll leave some dedicated time to you guys asking me whatever you would like. It would be great if we sort of focus the questions on the experience of medical appointments or the topic.
but feel free to ask me anything. I might not be able to answer specific questions. Like I know somebody asked about the nitty gritty about most recent vaccine updates. I'm going to leave that for another time. And I, of course, I'm not here in the capacity as a physician, so I'm not going to be able to give medical advice. That's always my little disclaimer.
So, when I started this or had the idea for this topic, I was in a space where I was going to multiple medical appointments during the week. Those were a combination of in-person and virtual appointments. Because of those appointments, I couldn't do very much else because they are so
taxing and it got me thinking, why am I going to these medical appointments? Why have I committed to these? And as with any everything in my life, I try to be as intentional as possible. It doesn't mean I have control over what happens. It doesn't mean I can predict what predict what the outcome is going to be of all of my choices.
but it certainly helps me to set an intention for my decisions and have expectations or a purpose rather to each action. There are risks to having multiple medical appointments. One is the energy that it costs us. It costs us spoons. It uses up our energy envelope.
all of these metaphors that we use in the long COVID and fatiguing illness community to represent our finite resources, our finite abilities. It is stressful. The anticipation is stressful. The transportation is stressful. The interaction itself is taxing because you have to use a lot of your cognitive abilities.
Some of us are very sensitive to position. So standing up, sitting up, and even walking, I mean, that can be itself taxing. There is certainly monetary cost. And in addition to those aspects, there is also always the risk of having a bad interaction, meaning
You feel disrespected by the clinician. You feel like you've been misdiagnosed. The person doesn't understand the context of your life, may not be familiar with your condition. And instead of being open, honest, and encouraging with you, kind of shuts you down and shuts down the conversation. You can feel like you've been gaslit. And some of these
things have impacts on your treatment, right? You get misdiagnosed, you get the wrong treatment. At worst and at best, you get nowhere. When you have multiple appointments on a regular basis, like I do, you can kind of develop rolling PEM. Rolling PEM describes
a condition many of us experience. stands for post-exertional malaise. It is the extreme exhaustion that people with fatiguing illnesses like ME-CFS and about half of people with long COVID develop after exertion. It's like you work out and then you have to have your recovery time. But our recovery time is out of proportion to the activity.
and it can be really taxing. If you don't get that full recovery, if that full recovery time is interrupted and you do another activity, then your post-exertional malaise just tax up, taxes up or builds up and you don't have a chance to fully recover from any one given activity. That's referred to rolling pen.
Medical appointments can certainly cause that. And that's what I have been experiencing recently where I was like, this is too much. And I think the exhaustion and the effort that it requires for me to meet all of these appointments outweighs somewhat the benefit or minimizes the benefit that I'm getting from these appointments.
The other thing I really experienced, and maybe some of you have too, is this loss of control that I feel over my own health and medical plans. It is really frustrating when you don't feel like you're in control.
and you're doing what you want to do. And what I mean by this is I felt like I was constantly responding and reacting to the suggestions that my medical providers were offering. Start these three meds, do this therapy.
and follow up in three months. That was another load on me that I had to learn how to navigate. And it was really easy for them to give the suggestion and it was suggested with really good intentions. And that treatment strategy may work pretty easily for someone who is not easily fatigued. But for me, it felt like, how am I gonna do this now?
that their suggestions didn't feel like treatments that I wanted. Their suggestions and offerings was something that I had to fit into my life because they were really burdensome.
I would like to have a plan for my life and set some routine in my life. I know a lot of you feel the same way because what I've been finding is that a lot of us are kind of stereotypically type A and overachievers and we had a lot of plans for our life and we really thrive on routine. What happens
with long COVID and having to respond to a slew of medical appointments is that we lose a little bit of control over how we spend our days. And that is kind of counterintuitive. A long string of appointments at first glance feels like a lot of resources and a lot of opportunities.
That's something I should want, but it becomes a burden too. And what it does reflect for a long COVID is that no single person has all of the answers that I need. I have to keep searching. And so this long list of appointments in my calendar reflects the fact that I'm looking everywhere. Even
four, five years in, I'm still looking everywhere.
The one thing I'm noticing at this stage of my illness is that this feeling or like this loss of control or this feeling like I don't want to go to another appointment is different than early on. Early on in the really acute stages, I needed somebody to say, this is what you do. Do these three things and come back in a few months. Or, you know, in my case, was like a few weeks or like
text or email me tomorrow through the portals. But now that this is chronic, I've got a life to live. I don't want my whole life to be one medical appointment after another. I don't want to have to organize my life around the hospital or the treatment facilities. Those
should be few and far between. What do do in this situation?
I'll pause here for my own voice and to read some of your guys' feedback and if you have any thoughts right now.
Yep, Dr. Vicky V says she's got 11 appointments for various things, even unrelated to long COVID and the fatigue is real.
Annie is talking about the limitations of health insurance, how insurance networks change and that can change who is available to you. You're asking if I have thoughts on that. I certainly do. And Michael is asking how much can we push back on recommended labs? They can seem redundant and I worry about exposure when I have to sit.
in a crowded waiting room. Okay, so both of these things.
I'm just gonna make sure I'm reading Annie's fully.
Okay, I'll cover Annie's question first. What do you do when you're essentially when your doctor is no longer taking your insurance or your insurance changes and you lose the doctor that presumably you want to continue working with? There's a few options. You can ask how much it would cost to continue to see them out of pocket.
Most insurance policies have what's it called, like pre-arranged rates for providers who are out of network. So you may be able to get that cost covered partially. There is also an out of pocket maximum with most insurance plans for out of network costs as well. So the
medical billing office of that provider should be able to tell you the details of those options. That's if you want to keep with that provider. I have paid out of pocket for certain medical providers who don't take my insurance and who take other insurances. There's a whole other category of
sort of concierge physicians who don't take insurance at all. But you can pay cash for almost anything in America. That's not available or accessible to everyone. So another idea is to talk with that, that your original doctor and ask for recommendations. And unfortunately you just have to go shopping again, but.
the list should hopefully be more focused this way. The medical community is small. We kind of know who is who in our communities as physicians. And so your provider should be able to recommend somebody who's sort of similar to them in the ways that you like the most. I have also asked nurses and medical assistants
My primary care provider recently modified her practice so she doesn't see primary care patients anymore. She does more urgent care. And on my last visit, I was checked in by the nurse in the room and she told me, you know, Dr. So and So is not going to be here anymore. Do you want to see one of our other doctors? And I asked her, I'm like, do you think, like, what do you think?
Would you recommend either of them? Do you think I would be happy with them? And this was a person who I had developed a casual relationship with because I kept seeing that seeing her at visits and she frankly turned to me and was like, no, I don't think I don't think they're right for you. And that was really, really helpful. So.
Annie, I'm sorry you're losing your doctor due to insurance changes, but there are ways to work around it. None of them are ideal. All of them take resources, whether that is energy, time, or money. But hopefully you can find someone to replace who you have. Hopefully that answers your question.
Michael, your question about pushing back is really important and is a topic I want to cover. And I guess I'll do it now. You are in control of your medical history, your medical information, and your medical decision making.
It is really has become so rote for us to be asked really invasive, sensitive questions. And we are asked to trial medications and undergo treatments and undergo testing that has real energy burdens for us.
What I'm going to talk about in a little or expand on in a little bit, but what I'll introduce now is that just because you are ill does not mean that you have to do what someone else tells you to do or recommends. I have turned down testing. It was more invasive than lab work by simply asking the question.
What are we going to learn from this? And what is going to change our treatment strategy? How are these results going to change our treatment strategy? And if you keep asking that question of like clarifying questions, the answer becomes pretty clear. For me, it was no getting on this treadmill and running.
is not actually gonna help me. It's going to offer some information for the provider to sort of play with and find interesting. It's not necessarily gonna offer me more treatment strategies and certainly not focus treatment strategies that I couldn't use without that testing. So Michael, you can refuse anything you want.
We're going to talk in a little bit as somebody else asked a question of what if the wording in your medical record is a wording that you don't agree with. I one time recently went into Quest Lab.
to get some testing done and I was not fasted. And so one of the panels was cholesterol. And for those of you who've gotten your cholesterol tested, you should get it done when you're fasted. Otherwise it's not super helpful. And so I told the phlebotomist, like, I'm not fasted, so I'll come in another time to do that. And on the record, it said the patient refused lipid panel. I laugh.
I mean, I didn't protest that because it was like kind of a small thing in the corner of my record. But, you know, those are the words that we are taught to use as medical providers. It ultimately though is in our own control and is our own decision. And you don't have to get any lab testing you don't want to do. You don't want to get. That's the short answer.
Bethann, are you on? I see that you are in the chat online.
I hope that you are.
Maybe I'll ask, how did you guys get a link to the Substack Live? Is it in your email or was it in the chat?
Annie got it on the notifications. Vicki says email. I'll tell Beth. Hi Beth, we are live.
Try checking your email.
Thank you guys, this is all very new. I was under the impression that the link would be in the chat. Okay, go on.
All right.
Okay, I, hello Beth. I'm glad you're here. So the next part, topic I wanna discuss is what medical appointments should you go to? What are worthwhile? What I think is really important is, and what I tell other, like as I'm talking to more healthcare providers, I'm,
have gotten opportunities to speak with primary care providers is that you need someone, like patients need someone to be a home base. And so I want you to look for someone who can be your home base. Ideally, that's your primary care doctor, whether that's internal medicine, family medicine, or a specialist.
who might be like your long COVID doctor, but someone who can, might not have all of the answers for you, but can help hold your information and also make sure that you don't miss really important tests and screenings that you're due for that have nothing to do with long COVID. Someone asked a
question a while ago, Mary Matthews asked in the chat a while ago, I'll be going to see my primary care doctor for my annual in a couple of weeks. What blood work do you recommend to be tracked for people with long COVID? And the answer is there isn't any set blood panels or testing that tracks our symptoms or reflects our health.
This is a condition that relies predominantly on our reporting and clinical presentations of our disease. So your best marker is your own opinion, how you are feeling, what is bothering you most. But I have talked about the importance of annual visits with a primary care doctor on the podcast before.
Every year when I renew my insurance or the insurance starts fresh, I make sure to schedule my annual physical. And now that I'm of a certain age, I'll schedule my mammogram and kind of have an idea, think through other screens that I might need that are age appropriate. I do that because I'm, you know, think about the screenings because I have a background in that, but your primary care doctor,
is going to keep track of that. COVID can be overwhelming and consuming, but cancer still happens to people who have chronic illness. Heart disease still happens to people who have chronic illness. They may interact, but they may be completely separate. instead of thinking of...
blood work for long COVID at your annual, I would talk to your doctor about your health concerns. Remember your annual exam is blocked out for a longer time than follow-up exams. So it's a good opportunity to sort of go through systems problems like this is going on in my brain, this is going on in my heart, this is going on with my breathing.
this is going on with my pain or my musculoskeletal system. That's what annual visits are for and that's why they're given more time. So take advantage of that as well. The other thing I wanted to point out was that I have also recommended, unlike an annual exam when you have follow-up appointments, to get really focused about how you want to spend that 15-minute slot.
For annual visits, you have more time to go through the whole, all of the organ systems. That's the way we're typically trained in medicine, to think about disease processes. They are not, it's not ideal, but it helps us make sure we don't miss like a major organ system and get distracted, quote unquote, by any one problem.
So primary care doctor is really important. I think that home-based type of doctor is worth all the effort and resources that you have. Maybe that's a really dramatic, kind of a dramatic way of putting it, but I think it can really pay off when you're thinking about how do I spend my money? How do I spend my time? How do I spend my energy?
Having someone who can help brainstorm with you, who has the capacity and comfort to offer you referrals, who might be able to help you fill out paperwork for entitlements and resources, and someone you can write down as your primary doctor is really important. And so I think it behooves you to invest
effort into finding that home-based doctor, no matter which sort of field you end up finding them in. My big three are internal medicine, family medicine, and now more and more sort of infectious disease doctors who are becoming specialized in chronic illnesses or post-infectious illnesses like long COVID.
So speaking of this, another reader, Jen Newman asked a while ago, can a doctor who reads studies decide to treat someone along the lines of that study, even if there's no established guidelines for a clinical procedure and how does that work? So there are, this is sort of like the mountain that I've decided I'm hopefully not gonna die on, but this is gonna be my corner of.
medicine and like advocacy. Physicians do not have to follow evidence-based guidelines for everything. We as a medical culture and as a field are moving more towards evidence-based, the practice of evidence-based medicine, which is in and of itself, I think a good thing. The problem is when we don't have
sufficient evidence to support the use of any given treatment, then physicians have to be more open, creative, and willing to prescribe treatments that are safe and potentially beneficial to the individual patient sitting in front of them. Evidence-based medicine ideally studies groups or demographics of patients
and determines or suggests treatment strategies that benefit that certain demographic of people or people who have a subset of a certain set of symptoms or disease. And that is all supported by multiple levels of research. We don't have that for long COVID yet. We might not have that for a long time. Physicians can prescribe
medications outside of the FDA approved indications. This doesn't mean that a physician or a care provider is obligated to prescribe you anything because you asked for it. It also doesn't mean that insurance is going to cover the cost of it.
because it's not being prescribed for the FDA indication. So those are two caveats. But yes, doctors can prescribe treatments, both medications or procedures that don't have FDA approval for that condition. The thing is that provider has to have some level of comfort and has to have
something to back up the reasoning behind it so that if they get questioned by their employer, by the medical board to say, yeah, this was the indication, this was the purpose, this was the intention, and this was the safety profile. I really like the idea of patients bringing research papers to their doctor. And again, as I'm giving more talks to physicians,
I'm encouraging them to take that information, not as like a hit to their own ego, but to actually look at that information and then offer the context. Because if you're a lay person, if you're not in medicine, it has become more and more accessible to, or it's easier to access medical research. What years of medicine practice though gives you is the context.
Is this treatment safe and worthwhile to me as a patient? So I want you to think of, or ask, what is the safety profile of this medication? What is the cost of this medication? What are the potential side effects of this medication? And what, big question, is the end point here?
Results am I looking for? What specific results am I looking for? For things like beta blockers, for POTS, that is kind of easy to track. I want my heart rate, baseline heart rate to come down. I want my, I don't want to get so tachycardic when I stand up. Those are easily trackable. For something like brain fog and fatigue, you have to be a little bit more careful setting up
your expectations, I guess. And I did a whole podcast episode on this in the newsletter that I send with the link to this live. I'll link those episodes. I'm going to take a moment to review the chat.
Chana says, yes, it took nine months for me to convince my doc to prescribe low dose naltrexone. I'm assuming is the rest of that. And it now helps, but she refused for a long time. So, you know, I also did another episode on the stressors or the strains within which your doctor is working. We are like.
So there's so much fear mongering in medicine from hospital systems or I don't know our culture that we're going to get sued and we're going to lose our license if we do the wrong thing. And because it takes so much time, effort and money to become a doctor that I mean, it keeps it literally keeps us up at night. If we get a malpractice claim, we have to announce it.
to the medical world for years and years and years every time we apply for credentials at any hospital. So it makes us really fearful. And because I'm talking to you from America, we know this is a really litigious society that we live in. So that can make physicians hesitant to prescribe something they're not familiar with. The other thing is like the hospital system or their colleagues too, like the pressures.
of just their employer or doing something that's not sort of allowed or is not within practice guidelines of that employment structure can also make it harder for doctors to prescribe something that they haven't before. What really helps or like what I've offered is asking your doctor, like, do you know anybody who, like, do you have a colleague who prescribes this who might be?
able to talk to you about it. I wonder, am I pronouncing it Chana or Chana? What made the difference with your doctor when they ultimately prescribed it for you?
While you do that, and I took my sip of water, I'm gonna talk about specialist referrals. So we talked about primary care providers, and a lot of times they will hopefully refer you to some specialists. Again, what I talk to primary care providers, when you're thinking about a referral, I want you to think about the question you want that specialist to answer.
what you are consulting, you're consulting a literal specialist. Like they have seen more presumably cases that impact your particular problem than your primary care provider or whoever is doing the referral. Get really clear on what that question is. And as a primary care doctor, don't think about referrals as transfers of care. Think of them as
and another input that's going to build that home base structure that I was talking about. So get really clear for the indication for referral. What is the question that I am asking this specialist to answer or to evaluate me for? Why this specialty? Why this person? So we all know doctors are not all the same.
Personality, experience, background really matters. And so it would be helpful to sort of with your primary care doctor decide what is the problem, who could answer that problem or knows more about that specific problem or like what field. And then within that field, is there someone in particular who would be helpful?
I know that's easier said than done, but that's what I try to do.
So Channa says that she got her doctor to prescribe LDN eventually by sheer persistence and showing her studies. I really admire you for doing that and for being persistent. That's sometimes what it takes. Medicine is a culture that is very slow to change and very risk averse. This is not.
Silicon Valley, like I trained in Silicon Valley and like the culture. So the culture of Stanford was a little bit more like innovative, but in general, like that break things and move fast is not what you want from a doctor. You want someone boring. The problem is that strength of like reliability, steadiness, do what's known and true is sometimes
holds us back and is a weakness in medicine. So the next point I wanted to make was about therapies and testing. Michael, we talked about it a little bit that you always have control over what you want to get done and what you want to try. But I'll talk a little bit more. What is the goal of this therapy that is being proposed? Get really, really specific. What is the goal?
What is the intensity of the effort required for this treatment? What is the frequency of this treatment? This could be a pill that you have to take four or five times a day. This could be like physical therapy that you're being told to go to twice a week or occupational therapy. In my instance, that's a two hour drive away and she's recommending I go there once a week. Not possible for me.
I know what the benefit is for these treatments. I know what the goals are, my goals are. I also know if I stick to the pace that a typical person would or what they are recommending, I'm going to do more harm than good. It's gonna be more harmful than beneficial to me. So the next question is, if I can space these out, am I still gonna get some benefit?
For me with physical therapy and occupational therapy, the answer is often yes. So instead of going to occupational therapy once a week and taking the whole rest of the week just to recover from the endeavor, I'm spacing it out. I tried every two weeks. Now I'm doing closer to like once a month. And in between those visits, doing homework, like at home practices.
I can still see benefit and see improvement without having to undertake that effort so frequently. The same can be true for physical therapy. The same can be true for speech therapy. So consider spacing the pace. Sometimes it's the right treatment with the right goals.
but the frequency is just too much. And so take agency and take control back. Think more about these suggestions from your medical team as offers, like in a negotiation, like this is what I'm offering you. And you can say, that's great, but I can't do that. Well, how about this? And then the two of you can come up with a solution that might work for both of you.
It's also nice to talk to the practitioner about it, about your abilities, because then they can document it on their chart too. So it doesn't start, if you're worried about looking like a quote unquote bad patient, you know, it then becomes really clear that like, is not, I'm not capable of doing this. I'm too ill to stick with this timeline. I'm gonna, I can.
more likely do this. And if you cancel a appointment, which I recommend you do if you don't feel up to going, I don't care who threatens you with what, write down, I am ill, I cannot attend, I have transportation problems, I can't attend. You need to take care of your body and then we'll deal with the ramifications afterwards. But just be honest, I am ill and I cannot make it to this appointment.
That being said, it becomes a pattern, you need to be responsible for agreeing to things that are reasonable to you. We're all going to end up canceling social appointments, professional appointments, and medical appointments because our health is unexpectedly took a downturn. You also can anticipate a crash after a while.
You know when your schedule is too full. I'm saying this to myself too. And even though it's really hard, again, we are lot of type A overachievers, it is really important to develop a muscle that says no.
very clearly and you gotta flex that muscle and say, I can't do that, I can do this. This is what works for me, this doesn't work for me. Whatever words work for you, protect your time, protect your energy and protect your health.
All that being said, you can take a complete break from medical appointments. You can just take a break and say, I'm not doing, I'm logging out for a while and spend time with the spaces and faces that nourish you. I heard a patient and a patient advocate recently say, live your best disabled life for a while.
do what you think is potentially fun because it is taxing and grueling to constantly be absorbed in your health. And taking a break is your, within your rights. It does not mean that you are a bad patient. It does not mean you're not gonna be.
seen by your provider again, it doesn't mean you're being irresponsible. You need a break sometimes, and within that break, you might be able to give yourself an opportunity to reflect on your next step. Your intuition or your intuitive voice can get drowned out by all of the activity around you.
and all of the activity that you are doing to try to get better. Sometimes you need a little quiet to listen to that voice again and that intuition that'll tell you, hey, you don't need this treatment, maybe you need that. Give yourself some time, give yourself permission to say enough for now.
So as we wind down here in the last few minutes, I'll answer a couple of questions that I already received. Mundy Lu emailed me an ad said, I'm very excited to hear your strategies and opinions on doctor visits. I have a question I'm wondering about. I'm currently on SSDI due to long COVID.
Every time I have a doctor visit, I go into my online chart and review what the doctor has charted. Very smart. Sometimes they chart things that aren't accurate and could potentially be used against me regarding my functional abilities. What can be done, if anything, to correct the chart and how do I handle appointments to make sure my condition is documented correctly?
Fantastic question, a situation I have been in. I rely on disability policy that I paid into in residency to survive. And I'm very sensitive to getting misdiagnosed or having conditions and codes associated with my medical record that are inappropriate. I want to say that
This second part of the question, how do I handle appointments to make sure things are documented correctly? That's not your job. You are doing everything right. You keep doing what you are doing and honestly report your symptoms and say, is interfering with my ability to do X, Y, and Z. This is interfering with my ability to have a job. This is interfering.
with my ability to make dinner, any of your activities. So that part you're already doing right. If you note something in your chart that is documented incorrectly, the first thing I do is talk to the person who wrote it, the provider. This is potentially becoming a bigger issue because AI tools are being used to track notes.
So I actually am now sort of refusing, not like I typically refuse that, but maybe the AI tools will be a little bit more accurate. I don't know, but my mind's going down a path about AI now. So I'm gonna cut that short and come back to the question. Talk to the provider who wrote it.
and say, hey, why did you write this? I noticed this was documented. Why? Like what led to this? And get their reasoning behind it. I had a speech therapist write down that I had cognitive impairments that are not due to COVID. And I asked her, why did you write that? Is there another condition that this is from that I don't know about?
And she said, no, it wasn't that. This is the way our group, we have been told to document this. And I said, well, I have a problem with that because there's no other condition, if you don't have another condition to replace it with. I think it was phrased like it's not fully explained by COVID. It was like, then what else is it explained by?
I had an open talk with her. It wasn't antagonistic. She went back to her group and they brought it up and she came back to me a few visits later and said, we changed it because I agree like your arguments were correct. So again, talking about the constraints that providers work within, the first step is to talk to the person who wrote it and get it changed. Secondly, and maybe above all of this, I want to reassure you that for your SSDI claim, typically the judge is going to look at
the whole picture and if there is one outlier saying something a little off to either to suggest that you don't have the disability you claim to have, the judge is typically going to look at the whole picture and what most opinions fall under. So I wouldn't worry too much about an outlier, but I would document my, what's the word, disagreement with it.
If that doesn't get anywhere, you can talk with medical records department and file a complaint. You can talk with patient services of the hospital group or medical group and file a complaint or just share your experience and ask them. Like medical records is pretty helpful. The people who work in medical records shout out to you guys. I've always had a good experience and they're always super helpful, particularly with insurance.
disability insurance groups, okay? Like I have been told stories by my disability company, by Diane, that the medical records department was like, no, we don't, they're telling you we need that and we don't. Ultimately, you can go to the state medical board and file an official complaint if what you, your, if your efforts haven't helped. I would also, if you're getting
animosity from the provider and insistence that they're going to keep using the wrong diagnosis code or diagnosis, get another opinion, you need to leave that provider. Typically, you're not going to convince them, especially if they're documenting stuff that's not helping you. But just talk about it. And then the last question I'll answer in the last few minutes that we have. Michael wrote, just keeping track of different patient
Portals can eat up spoons and anytime you have to get set up as a new patient, you're providing info on medications and medical history that you've already provided a bunch of times. My answer to this is don't fill out everything. I saw a new physical therapist this week. They don't need to know my medication allergies. They don't need to know the dose of low dose naltrexone that I'm on.
my medical history and I'm going to share what I think is pertinent. I am going to them because I injured my arm and my wrist, it hurts when I move my wrist. I don't need to talk about the different doses of my beta blocker or the procedure that I got done. If they need more, so just fill it out, bare bones, use your own judgment. And if they have clarifying questions, they will ask them in the visit.
I am more more concerned about electronic health records as really disrupting our patient privacy and sharing things with people that don't need to have access to that information. So I've become more and more careful about the medical information that I share. That being said, I am always honest with my care provider. And if they are, I,
talk to them very openly. If they need to know specifics about certain things, I'm going to share that very openly. But I don't necessarily need to, everybody doesn't need to know my social security number, even medical offices. Everybody doesn't need to know every single dose of every single medication. They may not even look at it. So don't, you don't need to share it right away. You don't need to share it from jump. I hope that helps.
I have a couple of more minutes if anyone wants to ask a question or... Mundilu, I hope you heard my answer response to your question.
All right, guys, thank you so much for joining this second Long COVID MD Substack livestream. I hope that you have, what am I gonna hope for? I hope you have fulfilling and helpful medical interactions. I hope that you feel some agency over your health and your choices. I hope that your life is more
than doctor's appointments. And I hope that for myself, I hope that for you, I hope that for pretty much everyone, do what you feel is right for you. Listen to that intuitive voice and until next time, bye for now.
