CII - Lisa Sanders, MD, FACP
August 28, 2023Information
Lisa Sanders, MD, FACP, Associate Professor of Medicine, Medical Director
of the Yale Long COVID Multidisciplinary Care Center
“How about Afterwards: When the end of the infection isn’t the end of the illness”
ID10662
To CiteDCA Citation Guide
- 00:00So my name is Julio Silva,
- 00:02I'm a an MDPHD student in Akikawasaki's lab.
- 00:07And today I actually have the pleasure
- 00:10of introducing our next two speakers
- 00:14which in as a group I think our
- 00:18these two people in addition to being
- 00:22extraordinary clinicians really help
- 00:24bridge the gap between you know,
- 00:27medicine and science and helping
- 00:30the public understand it and
- 00:32communicating with the public.
- 00:34And I think that that you know often is
- 00:38something neglected but so crucial as
- 00:41it builds trust between the clinicians
- 00:44and people who who really you know,
- 00:47do this as as well as like the public who
- 00:50we you know ultimately our goal is to serve.
- 00:53So with that, I first want to
- 00:56introduce Doctor Lisa Sanders.
- 00:59She is perhaps she's a,
- 01:01she's an associate professor
- 01:02here at Yale School of Medicine.
- 01:05But she's perhaps best known,
- 01:07especially from a public perspective,
- 01:11for her biweekly column that she
- 01:14writes for in the New York Times
- 01:17Magazine called Diagnosis and this.
- 01:20This, of course,
- 01:21has served as an inspiration
- 01:23for TV shows like House,
- 01:26which she served as a consultant for,
- 01:28as well as the Netflix docu
- 01:32series called Diagnosis as well.
- 01:35So I I want to take this time
- 01:37just to invite her up and have her
- 01:40present. So thank
- 01:49you. Well, I don't know what I'm doing here,
- 01:51talking to a bunch of people,
- 01:52a bunch of scientists,
- 01:54but I'll do my best.
- 01:57So I'm interested, obviously,
- 01:59I'm very interested in long COVID,
- 02:01but I'm very interested in long
- 02:03COVID because it's part of a
- 02:05much bigger story about what
- 02:07happens to people when they
- 02:09get better but don't get well.
- 02:13So if you look at just long COVID, it was
- 02:22interestingly. Thank you.
- 02:27Okay, Okay, great. Thank you
- 02:33long COVID was first identified by
- 02:37patients Fiona Lowenstein at the top.
- 02:40She wrote an oped piece in the New York Times
- 02:44about her extremely slow recovery from COVID.
- 02:47The Oped was titled We Need to Talk about
- 02:50what coronavirus recoveries look like.
- 02:53There are a lot more complicated
- 02:54than most people realize,
- 02:55so that was the first sort of
- 02:58hint that something was going on.
- 03:00And that was published in April 13th of 2020,
- 03:03so very early in the pandemic.
- 03:05She felt lonely and so isolated
- 03:08because of her lengthy recovery.
- 03:11So she started an online chat group
- 03:13to talk to others who are trying
- 03:16to recover from this new virus.
- 03:19The woman on the bottom,
- 03:20Elise Perrego.
- 03:21She's a research scientist,
- 03:23and she introduced the term long COVID.
- 03:26She she created this hashtag
- 03:29long COVID in May of 2020.
- 03:32And of course that term was
- 03:35immediately embraced by the community.
- 03:39So it's made quite a splash since then.
- 03:44At there was a recent CDC study published
- 03:48I think 2 weeks ago that estimated that
- 03:51up to 23 million people in the United
- 03:55States have developed along COVID.
- 03:57That's a lot.
- 03:59That's a whole lot.
- 04:01So what exactly how do we define long COVID?
- 04:08Actually really badly,
- 04:09in my opinion and in everybody's opinion.
- 04:13I went to a conference a few weeks ago
- 04:16at the National Academy of Sciences
- 04:19or Medicine rather to consider whether
- 04:22the definition of long COVID should
- 04:25be changed to make it more narrow.
- 04:28Right now it's defined as the signs
- 04:34and symptoms and conditions that
- 04:36continue or develop after an initial
- 04:39COVID-19 or SARS COVID 2 infection.
- 04:41So basically what they're saying you had
- 04:45COVID and then something bad happened.
- 04:47So you can see that that's a that's
- 04:50a a ridiculously broad definition.
- 04:55So it has the symptoms have to be
- 04:58present for four weeks or more after the
- 05:01initial phase of the of the infection.
- 05:03And actually The Who uses 3 months
- 05:06because it's not uncommon for
- 05:08people to be to still feel terrible
- 05:11a month after their infection.
- 05:14But the National Academy said four weeks.
- 05:19It's multisystemic, often.
- 05:23It often presents with relapsing
- 05:26and remitting, A relapsing,
- 05:28remitting kind of pattern and it
- 05:31might progress or worsen over time.
- 05:34It can even get to be very severe
- 05:36and life threatening, months,
- 05:38even years after the infection.
- 05:42And finally what they say is that
- 05:45long COVID is not one disease.
- 05:47It's lots of different things.
- 05:49It's like, I don't know, cancer, you know?
- 05:52I mean, it contains multitudes.
- 05:54It's not like cancer, but in that way it is.
- 06:00How does it manifest itself?
- 06:02Everywhere, I mean everywhere.
- 06:04You know, it's it's in the brain,
- 06:08it's in the heart,
- 06:09it's in the stomach, insomnia,
- 06:12anxiety, cough, pulmonary fibrosis.
- 06:17I mean it's just insane the range of
- 06:20the symptoms that it includes in.
- 06:24In May, there was a study published
- 06:29in JAMA that looked at at a lot
- 06:32of did a meta analysis of a lot
- 06:34of studies that were reporting
- 06:35on long COVID and came up with
- 06:3812 symptoms linked to long COVID.
- 06:40This has been a source of great
- 06:43irritation to a lot of the people I see
- 06:46who don't find their symptom up on that list,
- 06:49but they were trying to figure
- 06:51out a way to narrow it down so
- 06:53that it's not just anything bad
- 06:55that happens to you after COVID.
- 06:57So that was their effort.
- 07:02I'm a clinician, so the answer to
- 07:07why is not something that I embrace.
- 07:11My question is what can I do to help?
- 07:14Why is not so good?
- 07:15So I depend on other people
- 07:18to help me understand why.
- 07:20And so you can see that there are many
- 07:23different possible causes and probably
- 07:26even more than this that lead to
- 07:30different pathophysiologies that can end,
- 07:32that can bring a patient to having
- 07:36task or long COVID endothelial
- 07:39dysfunction and these microclots
- 07:41that get talked about a lot or
- 07:45persistent viral reservoir which
- 07:47Harlan Krumholtz is trying to possibly
- 07:51identify through his Paxlovid study.
- 07:55So there are a lot of different
- 07:56ways auto antibodies.
- 07:57So there are a lot of different ways
- 07:59that this disease impacts our patients
- 08:02and because it's got because it's
- 08:05such a a huge disease where which can
- 08:08manifest in so many different ways,
- 08:10there's a there's a fair
- 08:12amount of skepticism.
- 08:13So you know I have a a very well
- 08:15used box of Kleenex that is replaced
- 08:18daily because people are quite
- 08:21frustrated and sad and wonder if
- 08:24they're insane when they come in with
- 08:26some of the symptoms that they have.
- 08:30So there is some good news. Last week's
- 08:37Morbidity and Mortality Weekly
- 08:39Report from August 11th reported
- 08:41that the prevalence of long COVID
- 08:43had declined over the past year
- 08:52from like. So if you look at all Americans,
- 08:57the number of patients with long
- 09:00COVID decreased from 7.5% to 6%.
- 09:02So that's good.
- 09:04And if you just look at adults who
- 09:08who actually had known COVID-19,
- 09:12if you just limit it to that,
- 09:13it decreased from basically 19% to 11%.
- 09:17But still, if you knew that you had a
- 09:21one in ten chance of having this bad
- 09:25cold last for weeks or months or years,
- 09:31I mean it's I think that's pretty it's
- 09:33still a pretty frightening possibility.
- 09:39Approximately 1/4 of adults with long COVID,
- 09:43it's a lot of people report significant
- 09:46limitations on their activities.
- 09:50That same report from the MM from
- 09:53the CDC said that long COVID is
- 09:56associated with a lower likelihood
- 09:59of working full time and a higher
- 10:02likelihood of being unemployed.
- 10:04The report cites data from the New
- 10:06York State Insurance funds that 18%
- 10:09of claimants with long COVID could not
- 10:13return to work for more than a year.
- 10:16So that's devastating for most people.
- 10:21Just to let you look at the,
- 10:24the change in prevalence,
- 10:29sorry for it being so busy,
- 10:32but that big fat black line is the
- 10:35average and you can see that it drops
- 10:37at the at the end of last year and
- 10:40then around January sort of stabilizes.
- 10:43But if you look at the different age groups,
- 10:47the bottom age group,
- 10:48those are people over 80.
- 10:50Obviously they have the lowest
- 10:53prevalence of long COVID,
- 10:55but it is creeping upwards and the
- 10:58other group where there's an inflection
- 11:00point and it started to creep up
- 11:02by the people 50 to 55 years old.
- 11:05So people still in,
- 11:09I like to thank the prime of their
- 11:11life or at least part of it.
- 11:13So it's distributed differently.
- 11:14I mean it is good news overall,
- 11:18but people are still quite debilitated.
- 11:26So this comes from the INSPIRE study
- 11:30that's the innovative support for patients
- 11:34with SARS COVID 2 infection registry.
- 11:37This looked at, I thought this
- 11:38was such a an interesting idea.
- 11:41So this looked at 3800 patients who
- 11:44are getting tested for COVID and
- 11:47were recruited before the results
- 11:49of their tests were known and
- 11:51surveyed then about their symptoms.
- 11:53And then at three months, six months,
- 11:56nine months and a year after that test,
- 12:00the dark blue lines at the top.
- 12:02The dark blue bars represent the 12188
- 12:07patients who tested positive for COVID,
- 12:09who filled out all of the surveys.
- 12:11The lighter blue below are the survey
- 12:15results of the 453 patients who were
- 12:19presumably sick when they take took the
- 12:22test but tested ultimately tested negative.
- 12:24For COVID, the dark bars represent
- 12:27persistent symptoms in both groups.
- 12:30The lighter tinges at the
- 12:32end are new symptoms,
- 12:34symptoms that they didn't have
- 12:35when they took.
- 12:36For this one, this is 3 months out.
- 12:40So the light blue is symptoms that
- 12:42didn't exist when they took the first
- 12:45survey when they were first sick,
- 12:47but exists now.
- 12:48And so you see that the people who
- 12:52didn't have COVID had something and with
- 12:57persistent symptoms at three months,
- 13:02then again at six months
- 13:08and again at a year. So these are,
- 13:12this is the same group of people
- 13:14just tracked over the year.
- 13:19So I was surprised by this when I when
- 13:24Erica Spatz first told me about it.
- 13:26But I shouldn't have been because
- 13:29this idea of a post viral or a post
- 13:33infectious syndrome is far from new.
- 13:37You know, if you look back in history,
- 13:42the Russian flu in 1892,
- 13:46it's called the Russian Flu because
- 13:48the first reported cases were in
- 13:51Saint Petersburg was a devastating
- 13:55pandemic. This is the cover of
- 14:00London's Illustrated Police News.
- 14:02It reported on the 1st and most deadly
- 14:06pandemic of the industrial era.
- 14:08It killed one out of every 1400
- 14:11people alive on the planet.
- 14:13So a really terrible flu.
- 14:18But even then, there were many
- 14:20cases where the symptoms persisted
- 14:22well after the flu resolved.
- 14:24The neurologic conditions observed
- 14:26after the Russian influenza were
- 14:28given many different names. Neuralgia.
- 14:30Do you know them from old novels,
- 14:33if you read old novels or
- 14:35from your history books?
- 14:36Neuralgia, Neurasthenia,
- 14:38neuritis, nerve exhaustion grip,
- 14:42cataplexy, postgripple, numbness.
- 14:44I mean, you can recognize
- 14:47aspects of long COVID in this.
- 14:50You know, the peripheral neuropathy,
- 14:52the post exertional malaise,
- 14:56prostration, psychosis,
- 14:58inertia, anxiety, paranoia.
- 15:00These are what how these
- 15:03people's symptoms were described.
- 15:05There was a a Victorian Dr.
- 15:08throat specialist who described
- 15:09how influenza appeared to quote run
- 15:12up and down the nervous keyboard,
- 15:15stirring up disorder and pain in
- 15:17different parts of the body with what
- 15:21almost seemed malicious Caprice.
- 15:23That's how that was described.
- 15:25And that was 1892.
- 15:28And then of course there was
- 15:30the Spanish flu in 1918.
- 15:32And let me just put in a
- 15:33good word for the Spanish.
- 15:34The reason it's called the Spanish
- 15:36flu is because during World War
- 15:38One they weren't involved in the
- 15:40war and so they had a Free Press.
- 15:42And so they were the first people
- 15:45to report this epidemic,
- 15:46which was absolutely devastating.
- 15:49It's estimated that about 500 million people,
- 15:53or 1/3 of the world's population,
- 15:55became infected with this virus.
- 15:58The number of deaths was estimated to
- 16:00be at least 50 million worldwide and
- 16:02about 675,000 occurring in the United States.
- 16:06Mortality was mortality was high
- 16:09in people younger than five,
- 16:11those between 20 and 40,
- 16:14and those who were 65 and oldest,
- 16:17the highest.
- 16:18Mortality in healthy people was a
- 16:21unique feature of this particular pandemic,
- 16:25but for those who are who survived,
- 16:27at least some of them,
- 16:29the suffering was not over the the
- 16:33long term neurologic effects of
- 16:35this flu included Parkinsonianism,
- 16:38catatonia,
- 16:39and something called Encephalitis lethargica.
- 16:46That term was first used by an
- 16:50Austrian neurologist after he
- 16:52identified an increased number of
- 16:54patients in Vienna with meningitis and
- 16:57delirium during the winters of 1916 and 1917,
- 17:01and in 1980.
- 17:02Eighteen disorders that were similar to
- 17:04encephalitis lethargica were reported
- 17:06elsewhere in Europe and the United States,
- 17:09with a peak of cases in 1923,
- 17:12and declined over the course of the decade.
- 17:15So as with the the post Russian flu epidemic,
- 17:21it spiked and then disappeared
- 17:24and nobody talked about it.
- 17:28So it's not just COVID.
- 17:32This is from Akiko's fantastic
- 17:36article in Nature magazine last year.
- 17:39Fatigue has been the most widely
- 17:42measured and followed symptom,
- 17:44but of course not the only symptom.
- 17:46And you can look.
- 17:47I mean, what a, what,
- 17:49a what a range of illnesses,
- 17:52many of which are studied by this group.
- 17:58So it ain't just COVID.
- 18:02So I run the newly started the
- 18:07New long COVID Clinic.
- 18:10But I would be,
- 18:11it would be wrong of me not
- 18:13to talk about the real,
- 18:15the source of that clinic.
- 18:17These are the people who cared,
- 18:21who provided long COVID care
- 18:23for the first years of
- 18:26this pandemic. And actually several
- 18:28of the people in this slide,
- 18:30specifically Jennifer Possek,
- 18:33Erica Spatz, Lindsay McAlpine put
- 18:39together the clinic that I now run.
- 18:43And they were very thoughtful in how
- 18:45they put it together and and recognized
- 18:48that this required a multidisciplinary
- 18:50approach and that it required an internist.
- 18:53So I was thrilled when I heard about it.
- 18:57So this is our crowd.
- 19:00This is along COVID and you see that
- 19:03there there are respiratory therapists,
- 19:05there are nurses,
- 19:07there are physical therapists,
- 19:10there's a PA and ME and we see
- 19:14patients five days a week, 3 days.
- 19:18We see new patients two days.
- 19:20We do follow-ups.
- 19:24It's a multi specialty clinic.
- 19:32So we get to open.
- 19:34We got to open with the hard one
- 19:36knowledge of those who people who
- 19:37had seen patients here at Yale.
- 19:42Patients are screened by nursing before they
- 19:45come in so that we can get their records.
- 19:47We know that for most of them this
- 19:51is not their first visit by far.
- 19:54At the time of their visit,
- 19:55they're always seen by a physical therapist,
- 19:58also by social worker and and by a physician.
- 20:03And when appropriate,
- 20:04they're also seen by a respiratory therapist.
- 20:10We. Require referrals.
- 20:13We require referrals because after we sort
- 20:16of address these immediate concerns there,
- 20:20it's not like they're going to go away.
- 20:21It's not like we can give them two weeks
- 20:24of doxycycline and they'll get better.
- 20:26They're going to have these symptoms
- 20:28for a while, so we need to have them
- 20:30go back to their regular doctors.
- 20:32And we're located at the medical
- 20:36office building at Saint Ray's.
- 20:39So we opened on,
- 20:41we saw our first patient on March 20th
- 20:44and since then we've gotten about 240.
- 20:48This is up to July 1st at 245.
- 20:51Referrals we've seen had seen
- 20:54at that .206 patients,
- 21:00most of the most common
- 21:03referring diagnoses were
- 21:04exactly what you would think.
- 21:06Shortness of breath, fatigue,
- 21:10brain fog, pots, cough, anxiety.
- 21:15So that's what that's what
- 21:16they're starting with.
- 21:19Our job in this initial clinic
- 21:23evaluation is to see if their lungs work,
- 21:26if they have short shortness of breath,
- 21:28see how debilitated they are.
- 21:32They are the vast majority of
- 21:35patients who we see have not
- 21:37been active since they got sick.
- 21:41You know, I mean,
- 21:42many of them have spent a lot of far
- 21:45too much time on the sofa because
- 21:47they felt too terrible and because
- 21:49they were afraid that if they
- 21:51exercise they would get worse Because
- 21:52there were stories about people
- 21:54who had post exertional malaise,
- 21:55who exercised and got worse,
- 21:58or they did it themselves.
- 21:59They exercised.
- 22:00They decided to push through and go
- 22:03for that run and then you know they
- 22:06were in bed for days afterwards.
- 22:08So there with the physical therapist,
- 22:10we do 6 minute walk test for people who
- 22:15have symptoms of autonomic dysfunction.
- 22:17We do something called an active stand test.
- 22:20That's the poor man's tilt table test,
- 22:24which is supposed to be as good,
- 22:25but I don't know.
- 22:28That's what I read.
- 22:30Social work tries to assess their
- 22:32needs and their support and
- 22:34provide counseling when needed.
- 22:36And we have a psychiatrist we work
- 22:39with when medications are indicated
- 22:41and we have a support group,
- 22:44A zoom support group that will
- 22:46be starting in September.
- 22:49So and then I see them or sometimes
- 22:51my PA sees them,
- 22:52although he usually sees people in
- 22:53follow up and we get a thorough
- 22:55history and we do a physical exam.
- 22:57We get whatever work up we think is
- 23:01needed and we either treat them or
- 23:04refer them to subspecialists for treatment.
- 23:07My goal when I see them is to to make
- 23:11sure that they have long COVID and
- 23:13they don't have anything else about,
- 23:16I would say 1/6 or so.
- 23:19You know a good,
- 23:20a decent sized handful of the
- 23:22people who come to see me actually
- 23:24have something else.
- 23:25And so we try to get them taken
- 23:29care of for those things as I think
- 23:31it's actually kind of a victory
- 23:33when they have something else
- 23:35because most things we can do more
- 23:38for than we can for long COVID.
- 23:42So what do we have that works in long COVID?
- 23:48It's it's not a pretty picture,
- 23:50but I'll show them to you.
- 23:54So some things we can be
- 23:57sure are pretty helpful.
- 24:01Physical therapy is often helpful,
- 24:04with some caveats.
- 24:06Some patients crash when they
- 24:09push themselves too hard,
- 24:11something known as post exertional malaise.
- 24:13These patients have to increase their
- 24:15workload super slowly and recognize
- 24:18their limits so that they don't crash.
- 24:20I don't think that there's any
- 24:22evidence that these crashes cause harm,
- 24:24but they do steal time,
- 24:28and that's a bad thing.
- 24:32But they're kinds of exercises
- 24:33that have been developed.
- 24:34You see this woman who's
- 24:37exercising loaded to the floor.
- 24:39People who have or autonomic
- 24:42dysfunction often need to do
- 24:45exercise in a recumbent position.
- 24:47So there are a couple of
- 24:49protocols that we do for them.
- 24:56So something that we see a lot is pots.
- 25:02It's a kind of orthostatic intolerance.
- 25:05Pot stands for Postural
- 25:08Orthostatic Tachycardia syndrome,
- 25:09where they'll tell you their heart races
- 25:13and they get dizzy when they stand up.
- 25:16And these are the people you see in stories
- 25:19about long COVID who are in wheelchairs
- 25:23because they really cannot stand up.
- 25:26And it's been shown that certain kinds
- 25:30of exercises can be helpful for them,
- 25:33you know, recumbent exercise.
- 25:34But also one of the things that helps
- 25:37and there are, I'll get to this,
- 25:38there are a couple of medicines,
- 25:39but compression stockings,
- 25:41serious compression stockings,
- 25:44not the, you know,
- 25:45not the ones that you that you normally
- 25:47buy that have a pressure of about 15 to 20
- 25:51millimeters of mercury per
- 25:53square inch, but 30 to 40.
- 25:56And the compression increases as you
- 25:58move upwards and they have to go
- 26:00all the way to the waist because so
- 26:02much of that extra blood that we're
- 26:03trying to get back to the heart is in
- 26:06those in those lower blood vessels.
- 26:09So that's been shown to work
- 26:11in combination with sodium
- 26:16for brain fog, which is a super common
- 26:21complaint of those with long COVID.
- 26:23Cognitive therapy is sometimes
- 26:25useful for brain fog.
- 26:27Studies evaluating cognitive
- 26:29deficit after COVID generally show
- 26:32impairments in the cognitive domains
- 26:35of attention and executive function.
- 26:37And let me just say for daily life,
- 26:40those are the two skills
- 26:42that you use the most.
- 26:43And so these people are can be terribly
- 26:46debilitated and cognitive therapy
- 26:48has been shown to be helpful in some
- 26:51types of cognitive deficits or brain
- 26:53fog for example post traumatic you
- 26:57know post concussive brain fog has
- 27:00been shown to be helped by cognitive
- 27:02therapy or chemotherapy chemo brain.
- 27:07So for cognitive therapy, they're
- 27:09usually two kinds of approach it or two.
- 27:12Two aspects to this.
- 27:13First, they give them the skills to
- 27:16manage not having executive function
- 27:18and not having very good attention.
- 27:21So they give them some skills to
- 27:23learn how to manage that life.
- 27:25And then there are exercises
- 27:26to try to get things working.
- 27:28Again, the evidence isn't great,
- 27:32none of the evidence is great,
- 27:35but it's often helpful.
- 27:39And then there are medications.
- 27:44I haven't done a deep dive into their use,
- 27:46but other long supplements,
- 27:48for example, they are used.
- 27:50I haven't done a deep dive into their use,
- 27:52but other clinics like the one at
- 27:54Mount Sinai in New York use them a lot.
- 27:561 combination that's supposed to be
- 27:58useful is L, arginine and vitamin C
- 28:01I'm not really sure what those do.
- 28:04I think it's for Vasospasm.
- 28:06I'm not exactly sure how it works,
- 28:09but there are some studies that look at that.
- 28:12I use the combination of supplement and
- 28:15medication that was evaluated by Armin
- 28:18Feshirakis a day a couple of years ago,
- 28:21an acetylcysteine and guanfacine,
- 28:24an acetylcysteine.
- 28:26I mean, I know about it because people
- 28:28use it after an overdose with Tylenol,
- 28:30but it's been used for a lot of things.
- 28:32And guanfacine was a medicine
- 28:34that was used for a DD and those
- 28:37have been shown to help many.
- 28:39And of course lots of people come in
- 28:41after hearing about low dose naltrexone.
- 28:44It's been used to treat chronic
- 28:46pain for many years.
- 28:47And one study done specifically in
- 28:50people with long COVID shows that
- 28:53it improved fatigue and brain fog.
- 28:56So one of the things that's been
- 28:59most well studied is loss of sense
- 29:01of smell and sense of taste.
- 29:04I think it's been studied so much
- 29:07because it's easy to measure and cheap.
- 29:10There are these things called sniffing
- 29:12sticks and you can, they've been,
- 29:15they're, they're measurable.
- 29:17So one of the easiest things are using
- 29:21a combination of four aromatic oils
- 29:25to help you improve your smelling.
- 29:28You're supposed to smell them every day,
- 29:32seven days a week for six months.
- 29:35And at the end of that time period,
- 29:37most people like over 60% of
- 29:40people will have their smell back.
- 29:43Was that just over time?
- 29:44I don't know, but that's what we know.
- 29:50There's also,
- 29:53I just read a fascinating piece,
- 29:55a systematic review looking at
- 29:58what works in in long COVID.
- 30:02And so they looked at, they did a
- 30:05deep dive into what's been tried for,
- 30:07the sense of smell and taste.
- 30:10So as an internist,
- 30:12everybody goes to steroids.
- 30:14And so nasal steroids have been extensively
- 30:18evaluated and found to not work at all.
- 30:22So there are a couple of other
- 30:24nasal solutions that have been
- 30:25shown to have some effectiveness.
- 30:27They're not on the market that you can't.
- 30:29You can get them made at
- 30:30a compounding pharmacy.
- 30:32One is a sodium gluconate solution.
- 30:36Another is something called Tetra
- 30:40sodium pyrophosphate nasal spray.
- 30:42I just learned about these and
- 30:44so I haven't examined them at
- 30:46all or tried to get them made,
- 30:48but they did seem to be effective.
- 30:51But they have to be made.
- 30:56So one of my patients came in
- 31:00and demanded this for her lack
- 31:03of sense of smell and taste.
- 31:06This is a stellate ganglion blockade
- 31:11they injected with lidocaine,
- 31:13which of course only lasts
- 31:14a few hours and wears off.
- 31:16But she said that the Facebook
- 31:19group on people who have lost their
- 31:23sense of taste and smell through
- 31:25COVID was all a flame over this.
- 31:29She'd already tried the aromatics.
- 31:32I didn't know about these other nasal sprays,
- 31:34but I didn't know that nasal
- 31:36steroids didn't work,
- 31:37and she'd also tried them several times.
- 31:38So I'm like, okay,
- 31:40Let's see if there's anybody at
- 31:41Yale who does this kind of thing,
- 31:43because it's used for a lot of things,
- 31:45mostly pain control.
- 31:46So I found a guy who does it,
- 31:49who was willing to do it.
- 31:50And so you see, there's ultrasound,
- 31:52there's an injection of lidocaine
- 31:55into the Stella Ganglion.
- 31:57And I thought, well, here's hoping.
- 32:00So took her three months to get in
- 32:02to see the surgeon because that's
- 32:04how medicine rolls these days.
- 32:08And she called me.
- 32:10She said she went, she got the injection.
- 32:12Her husband took her to a diner for lunch.
- 32:15She said for the first time in
- 32:16three years she smelled coffee
- 32:18since she burst into tears.
- 32:21That's an end of 1, so I don't know.
- 32:23There are a couple of studies being
- 32:25done now, so we'll see if this works.
- 32:28I called the surgeon Robert Chow
- 32:31and I said why would that work?
- 32:36And he said got me.
- 32:39So I don't think we have a Gray.
- 32:41He said maybe the lidocaine
- 32:43shuts down the nerve and then
- 32:45it when it's like turning off
- 32:47your computer and it reboots.
- 32:49I don't know,
- 32:52maybe.
- 32:54But the long and short of it is
- 32:58that treatment for these symptoms is
- 33:02still a work in progress, like St.
- 33:04Raphael's and New Haven itself.
- 33:06A work in progress.
- 33:08And I hope to be able to do
- 33:11something for these people.
- 33:13And I'll tell you what,
- 33:14what we do most consistently
- 33:16is make them here feel heard,
- 33:19which turns out to be really important,
- 33:22and tell them that they're not crazy,
- 33:24which turns out to be really important
- 33:27as well. So that's all I got.
- 33:29Thank you.
- 33:45See, y'all don't take care of patients,
- 33:46right? The view up there, talk to people
- 33:55with ideas, without evidence and
- 33:57how do you make the decision about,
- 34:05Well, of course that is the hard part.
- 34:07I try to you know, if they come in
- 34:10asking for something that doesn't seem
- 34:12harmful and maybe has gotten a couple
- 34:15of small studies, I'm open to it.
- 34:18Supplements seem okay.
- 34:22This, still a ganglion block,
- 34:26pushed me to my limit.
- 34:27She had to push hard,
- 34:30but it's what she came in for and
- 34:35so I thought, okay, let's try it.
- 34:39I don't know. I assume her insurance
- 34:41paid for it because when people's
- 34:44insurance don't pay for things,
- 34:46I do tend to hear about it
- 34:47and I didn't hear about it.
- 34:48So that was my question is how
- 34:51are these treatments paid for
- 34:54if there's not evidence of?
- 34:56I don't know how the insurance companies
- 34:58are dealing with that, Not well.
- 35:00But I'll tell you before you
- 35:01can get in to see anybody,
- 35:03they have somebody whose job
- 35:05it is to call the insurance
- 35:06company and say is that paid for?
- 35:08So nobody gets in the door without that.
- 35:12Yes, Sir. I loved your talk earlier today.
- 35:16So this is, it's a common kind of striking.
- 35:20So whenever you describe, you know,
- 35:22the literature that serves
- 35:24that you've done for, you know,
- 35:27this viral epidemic based 92,
- 35:30I've actually talked to other people
- 35:32about this both in science and,
- 35:34you know, kind of media and stuff.
- 35:36And some people actually hypothesize
- 35:38that without evidence you don't
- 35:40really have didn't have the ability
- 35:42to do accurate back prostate and
- 35:43what could have test back then
- 35:45but that could have actually been
- 35:47the introduction of a ancestor of
- 35:50OC 43 which is a common coronavirus
- 35:53from a build line coronavirus. So
- 35:56and and the reason why they got me
- 35:58in to myself is because you mentioned
- 35:59many of the you know posts that you
- 36:02infection symptoms of that 1892 viral
- 36:06out rate that if it in fact was a you
- 36:10know essentially a no supporting pre
- 36:12ancestor then that would have been
- 36:15you know I I guess accurate in in that
- 36:17regard but there's really no way to
- 36:19know whether that was an influenza
- 36:21virus or a coronavirus you know that
- 36:23the socalled Russian Russian flu.
- 36:25But anyways, I heard that and I
- 36:27was like that's super interesting.
- 36:29You know that if it was a coronavirus
- 36:31like that, the the overlap and you know,
- 36:35prosecute symptoms are strikingly
- 36:36similar to COVID,
- 36:38right. And but actually even with the flu,
- 36:41you know, it depends on which
- 36:42flu strain it is. But you know,
- 36:44just in the reading that I've done,
- 36:46it looks like up to 25% of people
- 36:49after they get just the flu have
- 36:52symptoms that can last up to a year.
- 36:54So I mean the difference and like the
- 36:57people who were in the INSPIRE study,
- 37:00who who went to get a COVID test,
- 37:02I mean probably a good portion
- 37:04of them had the flu.
- 37:06And so you know,
- 37:08I think that's why they had such
- 37:10a dramatic and lengthy recovery.
- 37:14Yes, Sir. Hi,
- 37:16Justin Belski, Emergency Medicine.
- 37:17So we we see quite a few of these
- 37:19patients who are kind of desperate to
- 37:21come to the emergency room and really
- 37:23it's nothing we can really offer them.
- 37:25two-part question,
- 37:26one is you said there's sometimes
- 37:28an alternative diagnosis.
- 37:29What is your #1 alternative
- 37:31diagnosis you find?
- 37:32And #2, are there any objective
- 37:35tests such as abnormal PFT's and
- 37:38young healthy patients or anything
- 37:41objective that you can say okay,
- 37:43this is long COVID versus just
- 37:44kind of going off their symptoms.
- 37:46There's
- 37:48nothing. I mean that's not true.
- 37:50There are some super specialized testing that
- 37:54shows that are abnormal in some patients.
- 37:57Like I was talking to a group of doctors
- 38:02earlier today and was hearing about CPET
- 38:06that often that can show something.
- 38:08I mean, some people have studies that
- 38:10show they have endothelial dysfunction,
- 38:13but most people in most testing that is
- 38:17done routinely outside of research centers,
- 38:21they're completely normal,
- 38:22but they don't feel normal.
- 38:24But you know, tests are like questions,
- 38:27you know, and we've all played 20 questions
- 38:30where the 1st 20 answers we get are all no.
- 38:33And that's what's happening.
- 38:35I think in these postinfectious syndromes,
- 38:37we're asking the wrong questions.
- 38:39We don't know the right questions to ask.
- 38:41We don't have, maybe we don't even
- 38:44have the test yet to get there.
- 38:46But that's why they're their
- 38:48tests are negative.
- 38:49But that's of course why they they're
- 38:52looked at with such skepticism.
- 38:53Hey, I've done every test that
- 38:55I do want patients who are sick
- 38:57and I I can't find anything.
- 38:58But you know,
- 38:59I've written my column for 20 years,
- 39:0121 years now.
- 39:02And virtually everybody I've
- 39:04written about got that comment
- 39:07from a doctor at one point,
- 39:09you know that we've done everything we can
- 39:11to figure out what's going on with you.
- 39:12It's because they hadn't thought
- 39:14or didn't know the right test,
- 39:17the right question to ask.
- 39:18And that's where these patients are
- 39:23six. Well, I mean, they've been different.
- 39:25You know, I had one person who who's
- 39:29described monthly episodes of fever
- 39:32and pain and terribly heavy periods,
- 39:35and so I thought she probably
- 39:37had some sort of endometriosis.
- 39:39And I had a patient who I wrote about in
- 39:41my column, because I totally missed it,
- 39:43who had hyperthyroidism.
- 39:44I wanted to shoot myself.
- 39:46It was such an obvious diagnosis.
- 39:48But, you know,
- 39:48so they have a variety of different things.
- 39:50Some have neurologic problems
- 39:51that I don't know what they have,
- 39:54but it's definitely not long COVID and
- 39:57you definitely need to see somebody else.
- 39:59So you know I've I've referred
- 40:01people on to specialists,
- 40:03subspecialists who are still seeing
- 40:04them and we'll see what they have.
- 40:06Maybe they'll get sent back to me.
- 40:08We can't find anything.
- 40:09Probably is long COVID that's also
- 40:11that's also a possibility but at least
- 40:14they seemed atypical at the time.
- 40:16Thanks.