We don't have a good handle on the real long-term long Covid patients (the 6-12+ month kind), but it's definitely not rare. I had one patient with it referred to me, but also out of the 30 or so patients in my practice who got Covid earlier in the year, 2 had some Long Covid symptoms (one is my partner's healthy 30 year old son who has just a week of flu-like symptoms and loss of smell in March in NYC, but still now has intermittent days of severe fatigue and some cardiac symptoms. )
Overall, I'd say 10-20% of my outpatient mild-to-moderate cases have had some long-term sequelae. I've seen new onset diabetes, new onset asthma, hearing loss, orchitis (inflammation of the testicles which can cause infertility), one patient had to go on oxygen at night - not to mention the people who just had a cough and fatigue for 5 months.
There are a lot of long haulers. That’s why I get so mad when people say it’s a virus that has. “99% survival rate” say that to the 52 year old man we discharged to LTACH on a trach to vent who will likely be vent dependent for the rest of his life because of his fibrotic lungs. Or the same that we have had at our hospital for 300 days. They survived. But look at them. One will likely never make it home, the other will require a lot of care if he does
I don’t deny that there are a lot of people who THINK their symptoms are due to covid. But are they really and if so where’s the proof? This is anecdotal reports at best from people who have convinced themselves of something. This has been going on forever and long before covid existed. There are people who swear their aches and pains and a dozen other things are due to their fibromyalgia. Problem is roughly half the physicians in the country think fibromyalgia does not even exist. Some of these people are just nutty - it’s apparent when hearing them speak. Some have real pain they want to put a label on. Some make their own symptoms worse by stressing themselves out and obsessing over it.
There is a VERY SAFE medication used to treat opioid addiction. Yet some patients blame everything and anything they feel, to be due to this medication - everything from loss of memory to their hair or their teeth falling out. Getting off of this medication is no picnic and takes some patients more than a month to start to feel normal again. Yet others try to claim 2 years after not taking a single dose, they still have withdrawals or post acute withdrawal because of it. Again the only problem is it has never been supported by peer reviewed studies or research.
This is just 2 of countless examples. I’m not saying it’s not possible for a virus to cause longer lasting issues. What I am very much saying is at this point we dont have actual scientific evidence, peer reviewed and well studied to support it. That makes it self reported and anecdotal. But hey, if you saw it on Facebook or the internet, it must be true.
DonH Midwest Me 56 WAW-EXW 55 Met 11/95 / Married 5/00 Bomb 6/20/05 / She Filed on 6/2/06 / Divorced on 10/9/06 4 who'd qualify as GF since D & dated about 25 women since D
Don, I have to strongly disagree with you. What we are seeing with Long Covid may give us a lot of insight into those previous chronic fatigue patients, as their symptoms are so similar, but I can guarantee you this is NOT just "all in their heads".
First of all - we DO have concrete proof of many of the long term damages. Sophisticated heart tests show damage, kidney function is decreased, we know the virus can enter the brain, neurological and dermatological conditions have been observed, GI symptoms occur and the virus can be shed in the gut for months, etc etc.
Second the patients I have seen with serious chronic-fatigue type Long Covid syndrome had no reason to want to be sick or to benefit from being sick. And their symptoms were shockingly similar to what Long Covid patients are reporting online. They are definitely NOT making this up. And frankly the ignorant attitude that they must be, is making many of their lives infinitely worse. Most of these people were very functional in their lives before this hit. Athletes, teachers, high energy people - now one person posted with excitement today that for the first time in 8 months they were able to read a book!
Mast cell activation syndrome (acquired from the virus) seems to play a role in many. Some develop POTS. Other have developed autoimmune conditions triggered by the virus (we have research showing that Covid antibodies target many proteins that are targets of autoimmune disease. ) Some lose large amounts of weight (like 25-50 lbs or more) with no explanation (probably mostly due to malabsorption from the GI effects of the virus, undiagnosed celiac disease triggered by the virus, hyperthyroidism triggered by the virus, or lack of appetite triggered by loss of sense of smell and taste - still for many there's no explanation yet). Some may have adrenal damage from the virus although no one is really studying that well yet. Don't forget that mononucleosis can cause severe fatigue for up to 6 months. Why is it so difficult to believe that a brand new virus might affect some susceptible people for even longer than that?
To everyone out there - if you have a family member or friend who is suffering from this - THEY ARE NOT MAKING IT UP! I hear heartbreaking stories in the Long Covid group of people being abandoned by their spouses or family members just because they think they should be "over it" in two months. Don't do this to them. It's real, it's awful, and we don' know how to treat it yet (like I said before, the antihistamine approach is the only thing I've seen so far that seems to help some people, not all. ) And if they push too hard too soon they almost always relapse. They have to take it slow and gradual as they increase their activity. The athletes struggle with this but almost always pay the price of pushing too hard.
BTW, although I do not specialize in treatment of chronic fatigue syndrome, I do have a couple of patients that I inherited over the years. Both have tried everything in the book to get well. One is maintained on a very weird combination of medications that a previous physician started him on, it was the first thing in ten years that allowed him to function like a human being so I don't mess with it, even though it's unproven. He limps by in his life. The other is a woman who has shown me the photos of herself when she was a wild young thing on a motorcycle. She had many adventures in her life and was always a high energy person. Now she struggles with the simplest activities of daily life.
Neither is neurotic. Neither is benefiting in ANY way from being ill. I pray that we will be able to learn more about their conditions by studying this large group of similar patients that Covid has dumped on our doorstep.
And btw Don, just because a doctor can't diagnose something doesn't mean it doesn't exist. I have another patient with a deteriorating condition over several years. I figured out parts of the puzzle - a peculiar unexplained dysautonomia, a mild case of Ehlers-Danlos syndrome hypermobility type with POTS syndrome - but it took her finally seeing several specialists to get an esoteric antibody test from Germany which confirms that she has an autoimmune small fiber neuropathy causing most of her symptoms. She now is being treated by a university team of specialists with IV immunoglobulin infusions and the cancer drug Rituximab. Only her intelligence and persistence led to the final diagnosis, which I bet not one out of 50 patients could have gotten that far through the system to access.
Just as an aside - being a tech / mechanical type of guy I've always been impressed that doctors can get things right even a few times.
I had a flickering lightbulb in the bathroom this morning - was able to remove it, take a look at the contacts and screw it back in. Might just have been loose. If it fails again, I can actually disassemble things and perhaps swap parts. Doctors have to do all this with very limited visibility into the various parts and systems involved and they can't just swap parts until they get the faulty one.
Bad joke time ....
A colo-rectal surgeon decided that he had enough of dealing with a$$holes all day and decided to become a diesel mechanic.
So he goes to diesel mechanic school, takes the courses and is surprised when on the final exam he got 150%. He questioned this.
The instructor said that 50% of the mark was for disassembling the machine properly. 50% was for putting it back together properly.
. . .
And he awarded an extra 50% bonus because the student did it all through the tailpipe ....
Thenk yew - thenk yew - thenk yew .... I'll see myself out now.
On BD H52, W50 T27, M26 S21, D23 BD-9-Mar-16 D-15-Jan-18 Final-19-Apr-18 I am a storyteller. The story may do you no good. But a story is never for the listener. It is always for the one who tells
There is a very good documentary on Netflix I think called “diagnosis” a doctor who does a column for the NYT crowdsources For patients with unexplained undiagnosed, wrongly diagnosed illnesses . Which brings medical professionals around the globe to weigh in. Each episode follows someone different. There was maybe 2 people where is was really psychological. The others actually found real diagnosis and treatments . It’s pretty amazing. I agree, just because I doctor can’t diagnose it does not mean it doesn’t exist or isn’t real.
As far as COVID ...... our Chief medical officer who just retired came to do a Q&A on the covid vaccine on our unit. His specialty is infectious disease. He said there is a lot we can’t answer and there is a lot we don’t know because this has been around for only a year. I believe in the symptoms of long haulers. COVID wreaks havoc on the body, differently than any other virus we have known. And there is so much more to study and know that we won’t have answers to for years
As far as COVID ...... our Chief medical officer who just retired came to do a Q&A on the covid vaccine on our unit. His specialty is infectious disease. He said there is a lot we can’t answer and there is a lot we don’t know because this has been around for only a year.
Thank you Ginger for this quote. It sums up exactly my point and what I’m trying to say. We just don’t know yet. The one thing I do know from being in medicine since 1986 is what we think we know at one point in time we later discover we were way way way wrong about. Understanding constantly changes. Treatment is constantly changing. I’m seeing that up close and personal with this new client of mine. Just did a seminar with a surgeon from Mayo who does awake brain surgery. It was surreal to watch live in 4K HD and talk with him. Everyday he sees patients who were told they can’t be helped and surgery was impossible.
I’m speaking in generals. You are often speaking in one single patient KML. In general we don’t even know yet the effects of the vaccine. Will it protect against the new strains? We don’t know. Something like 23 people died in Norway after getting the vaccine. Does that mean we should stop it? Some people want to be well even though they are sick. Sadly sone want to be sick even though they are well. It’s their payoff or how they get attention. It all happens.
Again my point is, we just don’t know. It’s too soon to know or be certain. Like ginger’s chief medical officer says, a lot we can’t answer and don’t know. To perpetuate fear based on a guess is just wrong. Covid has taken on a life if it’s own to the detriment of everything else n life. Suicides are skyrocketing, overdose is up, we are starting to see school failure rates in the 400% over previous years. People have lost their businesses and their jobs. We need our balance back. Life is more than covid. What’s happened has happened. Let’s not make it even worse by guessing. You may be right. You may not. We just don’t know yet and we certainly don’t have conclusive proof - just guesses and assumptions.
DonH Midwest Me 56 WAW-EXW 55 Met 11/95 / Married 5/00 Bomb 6/20/05 / She Filed on 6/2/06 / Divorced on 10/9/06 4 who'd qualify as GF since D & dated about 25 women since D
For me - the vaccine is an unknown (first of its kind) but so are the side effects and long term effects of COVID. I went with the vaccine because at least there’s some control to it. I feel bad for all these old people that keeping getting kicked off their computers trying to sign up for it. But I also don’t think it should be mandatory for anyone.
Don makes good points about what quarantining has been doing to children. They are out of shape, not being supervised, getting way to much screen time via remote learning and video games (which is their new babysitter for parents that have to work from home) Getting depressed. And yeah no one has been reporting the increased ODs amongst kids not going to school. I hear from hospital staff this has been a problem. think that the policies are just not following common sense. Like during summer and fall our rates were super low - they could have opened up schools then and then shut them down during winter when we all new cases would increase. Then they could open windows or hold class outside. Just no common sense - why open up college campuses but keep elementary schools closed ? College kids can learn remotely and there was lots of spread - elementary kids cannot - and they’re has been very little spread amongst the classrooms of younger ones. .
The arbitrary selection of what businesses were allowed to be open and which ones had to close outraged a lot of people too and made them not take the guidelines as seriously. Why is it ok to eat in a restaurant but not go to school with masks? Why are public school administrators sending their own kids to expensive private schools?
And I’m saying all this as someone that identifies as a progressive liberal. (Not a libertarian)
