“Internal Rollercoaster” is a term that comes to mind. Also, “WTF?” and “Are you kidding me?”
Also, thank God for the Visible App. I don’t think I’d still have what little sanity I have without it. Thank’s MakeVisible.com!
Part of why you haven’t seen me here is increasingly strong hand tremors that make it very hard to type. In fact, I’m going to be cutting this shorter than I’d wanted to—I’ll bring up the other new Sx at a later date. For now, I wanted to offer you a partial transcript of TWIV #1088—in this episode, Dr Griffin breaks down not only COVID treatments but also Long-COVID. AND he makes it clear that there are other post-viral syndromes, so that’s nice.
I’ve tried to bold/italix in a helpful, way, but again…tremors. At a certain point I just had to cut my losses and save my sanity. The TWIV link (if you want to watch/hear) is time-coded to begin playing roughly where the transcript below begins.
I hope this can be of some use to you as you work with your doctors:
Dr Griffin: [00:00:00] The goal has always been-- and we need to keep reinforcing this-- to prevent disease... And you're not gonna prevent infection forever. So that's an unrealistic goal to begin with.
V Racaniello: So I'm not sure this. It's a good way to look at it. I think they should have looked at disease, but.
Dr Griffin: And actually, you have this database, you have over six million folks. Yeah. The data's out there. So by the way, this was, in Nature Communications. So yeah the data is potentially analyzable.
Not showing a huge difference, in all honesty but it would be great to see disease. Okay. All right, the article, early mortality after the first dose of coronavirus disease 2019 vaccination, a target trial emulation was published in CID.
So a problem that, that we encounterd with COVID vaccinations was a hesitancy surrounding safety concerns, right?
We still hear lots of anecdotes about how, high risk elderly patients they're too frail to vaccinate. They're going to die within the two months after getting a COVID vaccination.
Is this because elderly people with lots of medical problems have an increased risk of death from an adverse vaccine side effect, or
is this just a group with a high incidence of mortality to begin with?
Are these people dying at a higher rate because they got vaccinated, or
are they actually dying at a lower rate because they got vaccinated?
Here, the investigators conducted a target trial emulation to estimate And compare risk of death up to 60 days after two COVID 19 vaccination strategies.
Vaccination within seven days of enrollment Versus no vaccination through follow-up. The study cohort included individuals aged 18 years of age or older, enrolled in the VA administration system. We know that's lopsided to the elderly, eligible to receive COVID 19 vaccination according to guideline recommendations.
And the outcomes of interest included deaths from any cause and excluding a COVID 19 diagnosis. This is actually an important distinction here because we do not get any credit for saving people from COVID, right? You just risk getting penalized if there's a safety issue with the vaccine.
So they included 3,158,570 veterans,
364,993 received the vaccination at 60 days.
There were 156 deaths per 100, 000 veterans among those that were vaccinated
versus 185 deaths in the group that did not get vaccinations.
And remember, this is no credit for preventing the COVID. So this is pretty impressive.
V Racaniello: So you prevent COVID, you prevent deaths from other things. But they're not really other things. They're related-sequelae of COVID, I presume.
Dr Griffin: They go ahead and they exclude those with a COVID infection in the first 60 days, and we're going to calculate an absolute risk difference and we're going to look at a relative risk of 00.88..
you get a 12 percent reduction from all causes, even when you just forget about COVID 19.
V Racaniello: By vaccinating.
Dr Griffin: By vaccinating.
V Racaniello: So that is preventing COVID and therefore has some effect on other diseases, other causes of death.
Dr Griffin: Potentially, yeah. And as we've talked about people don't just die, from the acute COVID. Getting COVID can have others. Interesting data.
But I think the big thing here is we have to remember there are people out there saying, "I will guarantee you that in the next six months, 21 percent of the people that COVID, they'll be dead." They're not. They're not.
V Racaniello: Yes, they're full of it. They're full of it. They don't know what they're talking about.
Dr Griffin: Vaccines are safe. vaccines are effective. And as we see here again, vaccines are safe.
TREATMENTS
So all right, COVID early viral phase:
So still number one
Paxlovid:
and we've talked a little bit about some of the challenges. So the Paxlovid It's called Paxess program to help people get access there work with your pharmacist, work with this program
Remdesivir:
we don't use a lot of it, but an individual the other day got on the horn, so to speak, with the ER doc, spoke to a patient of one of my colleagues who was at the ER issues with drug interactions, and we went ahead and did a three-day course of Remdesivir.
Malnupiravir is another option,
no renal adjustments no drug interactions.
Still in some settings, convalescent plasma can be an option.
And week two, the cytokine storm week, the early inflammatory phase.
Steroids at the right person at the right patient, right time, right dose. Remember, there, there's risk to steroids, so we don't just give this out willy nilly.
We also don't want to do it during the first week.
We have some anticoagulation guidelines.
Pulmonary support,
Remdesivir if still in the first 10 days,
immune modulation
perhaps, tocilizumab growing safety data on that
and let's avoid using antibacterial agents to treat our viruses.
There are cases of co-infection. We've talked a little bit about the importance of identifying and treating those, but not just throwing antibiotics at viruses.
And today I'm actually going to spend a lot of time on the late phase. This is going to be a primer, I think it's called.
A special focus on the recognition and management of Long-COVID.
Let me start with the article "Burnout, Compassion Fatigue, and the Long Haul of Caring for Long-COVID". Now, in this article, the Family Health Center of San Diego shares their experience and efforts from clinicians who have participated in their CDC-funded three-year Continuing Professional Development Initiative.
We've talked previously about the issue of burnout in medicine, and they echo this by referencing that recent reports have found that 52 percent of nurses and 20 percent of physicians are planning to leave clinical practice. So we have before us millions of Americans suffering from Post-COVID Conditions and they point out that long-COVID is not the first but part of a history of post-infectious debilitating conditions that we see after a number of infections.
They suggest that part of the problem is that after acknowledging the patient's suffering, clinicians are often left not knowing what to do for them. S
o this is going to be part of my initial introduction. Educational efforts to target not only patients, because you can have a conversation, but also providers.
Hopefully, this will be sharing the clinical approach to Post-acute Sequelae of COVID. And I will mention that, it was Monday of last week, I had a discussion with David Petrino and I'm going to be meeting with the education folks at Mount Sinai tomorrow morning. talking about creating an educational resource for a lot of clinicians that want to be able to interact with these patients, want to be able to not just acknowledge their suffering, but want to know how to approach the diagnosis and want to know how to help these people.
Part of my efforts is if you feel empowered, you're not going to want to leave. You're not going to feel burnt out. You're going to feel hopefully excited.
So while my focus here is post-COVID or Post-COVID Conditions, PCC much of what I'm going to talk about actually can be helpful, I suggest, for Post-Infectious Sequelae in general. So I'm going to call this PIS. That's my acronym.
It's not a good one.
🤣
Dr Griffin: . Some of us are using. pre-visit [00:07:00] questionnaires and this could be a great way of getting lots of this information. Now I personally like listening to the patient tell their story so often I I listen, and then I try to extract critical information from the patient's narrative.
I'm still one of those individuals that just enjoys that, that interaction and listening and hearing the story in that narrative form. I think I get a lot from that and maybe more than what a questionnaire will give me. But what information do I think is helpful? What am I trying to pull out of that story?
Usually I try not to interrupt, I'll let them go for a while, but then a few directed questions:
when was the first COVID infection?
When were the other COVID infections? Because often people have multiple ones.
And then what happened with the infection or infections in terms of symptoms, severity, treatment?
I want to know, did someone give you steroids? Did they treat you with antibiotics? Did you get treated with an antiviral? Did you end up in the hospital?
And then, what are the post-infectious concerns?
And this might be categorized by organ systems but I'd like to leave this open and just listen.
As I point out we're still learning a lot from our patients and I think we should continue to do but I might ask targeted issues, questions about,
how is this impacting your ability to perform activities of daily living?
Are we seeing Post-Exertional Malaise?
Are you able to be active?
If you're active, what happens during the activity?
What happens after the activity?
What happens on those times when you need to push yourself a little bit harder?
As you'll see, I'm going to come back. I really want to detect whether or not Post-Exertional Malaise is part of presentation.
Also, cognitive issues, you'd think people would just put that out. Sometimes it takes directed questioning, and you ask, so
are you having, word-finding difficulties?
Are you experiencing this brain fog?
Now, making the diagnosis, and I think this is important, so we have our conversation, we get this narrative and before I go past this point
I'll start to ask this question:
does this sound like a post-infectious issue, or is maybe something else going on that this history and presentation has suggested?
What was the timing in terms of symptom onset, and timing in terms of the duration of symptoms?
Are these ongoing symptoms?
Are they fluctuating?
Was there a period when you felt better before the symptoms returned?
Did the symptoms start three to four weeks post-infection or just continue right from the start?
And then To make this distinction between acute, medium, and Long-COVID:
has it been 90 days since the infection?
I'm still hopeful during that less than 90 days. But I'm listening at this point.
Does this sound you were hiking in the woods and I'm worried about, a tick-borne illness?
Does this sound like it might be a thyroid or an adrenal issue? visual disturbances?
You don't want to miss other things just because the person had COVID.
Some people use a formal scoring system to diagnose Post-COVID Conditions and I'll leave a link. There was a JAMA article, but I tend not to, I feel like that might be helpful for certain research settings.
I might do some cognitive testing, but I tend to think about the CDC definition, as well as the WHO definition of Long-COVID: "the continuation. or development of new symptoms three months after the initial SARS CoV 2 infection with these symptoms lasting for at least two months with no other explanation."
I then might throw in some diagnostic testing, and I think there are certain baseline tests that, I suggest.
But additional ones are often prompted by the initial evaluation, right?
Talk about the basics first.
Might do a complete blood count.
might do a comprehensive metabolic panel,
a C reactive protein,
erythrocyte sedimentation rate,
D-dimer
anti nuclear antibodies, ANA,
an EBV serology panel,
and we've talked about how there's this correlation with these very high EBV serology levels
CMV IgG, again, those high levels we've [00:11:00] seen
serum serotonin, we've talked about seeing low levels
thyroid, so free T4 and TSH
maybe testosterone in certain circumstances.
Sometimes if I get a hysteria nod, I might ask them to do the nasaline testing
starting to look for dysautonomia
maybe pulse oximetry testing at rest and with activity
blood pressure testing with this but as I mentioned, sometimes targeted testing.
Someone who's maybe been in the ICU or who's had some significant pulmonary symptoms. There might be:
chest imaging.
We might even at this point be getting a particular specialist involved.
If someone has a lot of tachycardia, a lot of cardiac issues I think I'll say at this point, you don't need to do it alone.
A lot of times this is going to take a multi-specialty approach and maybe that can also help with the burnout and the isolation. Let's, find your colleagues who want to work with you, want to help your patients here.
So their story makes sense.
Maybe there's some objective data that's consistent, which is helpful for the patients, also helpful for us.
Then we actually have some options when it comes to diagnostic codes. So we have
COVID- 19, U07. 1.
We have PASC, that's your post COVID 19 condition unspecified, U09. 9.
As I mentioned, we're not just talking about COVID, so we might be talking about sequelae of other specified infectious and parasitic diseases.
That's our B94. 8.
We might want to be thinking about symptoms.
Is this a chronic fatigue presentation? An R53. 82.
Maybe it actually falls into this myalgic encephalitis chronic fatigue syndrome, which is a G93. 32.
And this is an area where I know a lot of people struggle because you really have to have a conversation with your patient.
Patients are sensitive to being labeled. And a lot of times your diagnosis will be perceived as labeling and patients have access to their records, so talk to your patient. Try to get a sense there's going to have to be an honest discussion here because you're going to have to give them an honest diagnosis.
But be sensitive, have this discussion, don't just have them surprised when they see something show up.
But a lot of times when it comes to disability, And insurance. They look at PASC, they looked at Covid, they're like, yeah, but what's the disability?
So you may be wanting to look for a diagnosis, like
a dysautonomia,
an arrhythmia,
a chronic fatigue.
All right, so now we feel comfortable with the diagnosis. What about treatment? And this is where I have to say it gets even tougher.
Part of this is gonna go back to history where we'll ask:
who have you seen for these issues? And usually people have seen several providers.
Have you gone to other centers?
Have you gone to Long-COVID centers?
What have they tried?
What have you tried?
And this is gonna require you to create a certain amount of chemistry because people may not always be excited to share what they've done. They may be embarrassed. They may have had negative interactions with the healthcare system.
And then I'm gonna move into what I'm gonna call three different types of interventions.
Intervention Number One:
And it’s limited here, evidence-based interventions. This is really where we want to be as much as possible. And I want to point out, if a specific diagnosis is identified, such as POTS, dysautonomia, cardiac issues, or sleep apnea, we have specific evidence-based therapeutics. We can address those issues.
And if POTS is identified, we might be talking about increased water and salt intake, certain exercise programs such as lower extremity strengthening to avoid venous pooling, maybe compression stockings, certain medications such as beta-blockers, mididrine, flutricortisone.
Remember, as we go down this road, Make sure you've identified that Post-Exertional Malaise because the last thing we want to do is trigger something that we think is harmful. We've talked about biopsy studies where you might actually be inducing necrosis if you're not careful going down this road.
Intervention Number Two:
Vaccination use post-infection as a therapeutic. This, we're going to reference our study that I was one of the authors on with Mount Sinai and Yale, where we had people with Long-COVID get vaccinated. And remember, the majority --But just the majority-- 60 percent were better, 20 percent nothing, 20 percent were actually worse.
And in that study, we started to identify maybe certain serum levels of things that might predict your response to vaccination. Vaccination maybe, but this is gonna have to be a joint decision because, one in five are gonna get worse. Three out of five get better, but still.
And, and just to harp on, really important to identify Post-Exertional Malaise. One of our therapeutic things could be not triggering these episodes, not allowing a patient to continue to hurt themselves. So if there's no evidence of post-Exertional Malaise, then physical therapy and real rehabilitation can be employed. And we actually have some studies supporting that.
So if PMA PEM is present, so Post-Exertional Malaise is present, then no, we're not going down that road. We could actually harm them.
Another thing we've talked about surprising, but now a couple studies, the Bifidobacterium Probiotics.
Still trying to understand what's going on there, but, 10 billion units, two times per day. But sometimes it requires a slow introduction, maybe 5 billion. And then 5 billion twice a day, and then ratcheting our way up. Interesting enough I have at least one patient that is getting the CYB01, the probiotic, prebiotic formulation that was studied in Hong Kong.
And then we've talked a little bit about melatonin, three to five milligrams for bed. Maybe helping with insomnia, but maybe actually having some impact upon cytokine levels.
So again, some evidence there.
Intervention Number Three:
And then we get into maybe the broader world. I'll say interventions extrapolated from evidence, but still not evidence based—
We wtill need to study this. Remember, 90 percent of our great ideas are, ultimately, not great ideas, so don't hang your hat on these. We need to fund these studies.
So we've talked about folks with
low serotonin.
how the SSRIs just really aren't giving us that, that that bang that we hope, that, that response that we want.
Sometimes we're actually working with our colleagues to use SSRIs at slightly higher doses.
But Listen, if you're not used to using these medicines, now's not the time to start on your Long-COVID patients. Work with a colleague who's knowledgeable and flexible and able to help patients here.
Maybe using medicines that don't rely on just SSRI activity. So things like duloxetine. Butrin, venlafaxine even we have folks using guanfacine before bed.
There's some case reports of methylphenidate but remember, just a word of caution here. Don't just go using these medicines if you're not familiar and comfortable with using them.
In patients with low cortisol some folks are looking at glucocorticoid and mineral corticoid replacement. Again, evidence extrapolated.
We don't have those studies evidence-based showing that this is actually associated with better outcomes.
What about natokinase? This is something that a lot of the groups talk a bit about, this 2, 000 fibrillinic units BID used in patients with Post-Exertional Malaise.
And this is based on the idea that maybe that Post-Exertional Malaise is driven by mitochondrial dysfunction and maybe this natokinase, so extrapolated.
In histamines. If we're seeing allergic or mass- cell- activation- syndrome- like presentations, maybe even in those contexts using some therapies extrapolated from the MCAS.
Box breathing. It's an interesting approach and a lot of the groups have fallen into doing this.
So think of a box in your head. So you breathe in for four seconds, hold it for four seconds. And hold it for four seconds. Breathe out for four seconds, hold four seconds, and then repeat. So it's this mindful breathing. And it actually it reminds me in a lot of ways of some of the yoga based breathing.
This mindful breathing. A lot of patients are reporting that it helps to [00:19:00] settle them, particularly when they're feeling like the buzzing, when they're feeling like the rapid heart rates.
Maybe we're getting some kind of a parasympathetic impact. Maybe we're extrapolating here from the evidence of the impacts upon the autonomic nervous system.
So this is all sort of evidence extrapolated, but not evidence-based. And this you would do for a short period of time, right? You do it every day. For just a few minutes of box breathing and it's boxed because it's 1, 2, 3, 4, right? I think it's like 4, 4, 4. Yeah. Four. Exactly. So you think of this box in your head.
Intervention Number “Don’t Prescribe These—Yet” 😉:
All right. And then, and unfortunately, we still have a number of anecdotal-based interventions. People have tried these. They've found a benefit. We're still waiting for more compelling evidence, but we have the NAC, N acetylcysteine, that's 600 milligrams twice a day. We have that low dose naltrexone, the LDN, working with your compounding pharmacy and titrating up very slowly from 0. 5 milligrams to 4. 5 per day. Some people are in low-dose aspirin. Sometimes we're [00:20:00] actually stumbling across dietary changes that seem to correlate with improved outcomes particularly when people avoid those high sugar, those high carb diets. Sometimes it'll be the what are the nightshade vegetables.
So a lot of people will find their personal their personal triggers. So I'm hoping that is helpful, give people a little bit more direction, maybe a little less burnout. And hopefully as we learn more, we're going to expand our evidence-based section.
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