[treprinum]

I spent two years in bed, sometimes sleeping 16 hours a day and feeling like passing out just from walking 100m. All my tests were fine, all doctors thought it's just "anxiety" and basically ignored me until I had what looked like a stroke when they started taking it slightly more seriously. However, given all the tests were OK I went in circles from one doctor to another when I had better days, or being completely bedridden when I hadn't.

Then one day I got finally upset by my deteriorating state, started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums from folks claiming it helped them, started slowly doing daily rowing machine workouts and within 1 month I was 1000x better.

I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.

[w______roy]

I can relate about physical exercise—I had debilitating long covid symptoms for about six months with no end in sight. Could not work out, had to plan climbing stairs around my schedule so I'd have 20 minutes after to recover. Until I was forced to go on a business trip to Europe for two weeks where I was walking 20-30,000 steps a day and carrying luggage everywhere. Afterwards I felt 80-90% better, it was crazy. Still no way to know if that was just coincidence or not, but I keep seeing anecdotal stories about physical activity being key.

[AnonCoward42]

This is actually a good point. Not necessarily true for everyone, but it can be caused by avoiding physical exercise too much after being sick for weeks. It mimics/triggers depression and you feel sick/bad because of that. Had that pre-2019, so it sounds very familiar. I felt sick for months and when I had to ignore it, it went relatively quickly away (in a few days really).

Some might call this psychosomatic, but I feel like calling it like this is maybe reversed or at least sounds reversed to me as the physical state triggers the psychological condition and can then start a vicious cycle, which is only broken on the physical level.

edit: Of course don't go full tilt and be sensible with your physical exercise after not doing anything (lying in bed) for a week or more. Even a walk in the park can be exercise!

[civilitty]

I don't think it's psychosomatic because it mirrors other physical injuries in weight training.

There is a threshold beyond which an injury becomes too severe and requires proper rest, an immobilizer, and physical therapy. It requires a little bit of experience to identify those injuries but below that threshold it's better to soldier through the pain with lighter intensity exercise that works the injured muscles.

A safe example is working through delayed onset muscle soreness.

[treprinum]

With LC it's difficult when you get POTS, i.e. my resting HR was 60 and the moment I stood up it shot to over 150, making me dizzy and super unwell. Rowing machine and electrolytes helped quickly though. Also, post-exertional malaise (PEM) is real, when I overdid it with sport on my good days, I paid by a week in bed unable to move. Pycnogenol/OPC turned out to be a great help with that.

[treprinum]

Full tilt meant 200m walk in the park -> instant PEM. When you have no clue what is going on, stop applying your basic recipes on new health issues from pandemics, you would literally harm other people that could suffer because of your silliness. Imagine this condition being more like being at 3/4 of slow dying from asphyxia on Mt. Everest. It felt like I was 70 years older and started understanding what old people go through when their body stops functioning properly. I am pretty sure there is some oxygenation issue as when I went to high mountains and left the gondola at the top of the mountain, I almost passed out from lack of oxygen and that was only like 6,000ft difference. That corrected once I went back to the valley so I could limp back to my hotel.

[AnonCoward42]

> When you have no clue what is going on, stop applying your basic recipes on new health issues from pandemics, you would literally harm other people that could suffer because of your silliness.

How can my comment harm people? It didn't say that walking (any distance) is the only or the lowest exercise possible nor did I say that lack of exercise is the only explanation to begin with. Actually the opposite is implied and taking a walk was an example for something that is usually not considered exercise.

[treprinum]

I was reacting to your edit when it became clear you didn't consider that just a short slow walk can send LC people to a bed for a week, i.e. physical activity is not an answer for people suffering from it.

[w______roy]

Definitely I think the psychological aspect plays a key role. I have not kept up with the Covid-19 literature in the last year and a half, but I recall many women reporting that it disrupted their cycle. In fact, my partner contracted Covid-19 and had an altered period for a few months and developed acne for the first time in their life. So it would seem hormones are being messed with, which can really mess with your emotions/mental state and like you say, could jumpstart a vicious cycle.

[giardini]

Europe trip = better diet + restricted schedule (esp. sleep)

perhaps?

[1over137]

>I really think medical science gets many things wrong and knows only a small piece of puzzle

That's certainly true, but medical science is well aware of the incredible benefits of physical exercise and the power of placebo.

[treprinum]

It's sad medical professionals switch into "it's all in your head" routine when they can't explain something.

[GuB-42]

Even if it is "all in your head" doesn't mean the problem will magically solve itself just by thinking about it.

The brain is a physical organ. It needs oxygen and nutrients, it reacts to all sorts of chemicals, etc... If it is "in my head", ok, but what is wrong with my head? Are my hormones messed up? Is oxygenation correct? Are the neurons in good shape? It you don't know what's wrong with my head, how do you know that's in my head?

[fragmede]

The idiotic thing of it is, of course everyone lives "inside their head". It's where consciousness lies (unless you're an ancient Egyptian and believe it comes from the heart, which is "just" the muscle that pumps blood around, and isn't packed full of neurons). So it's a stupid statement to begin with. I live, as do you, and everyone else, "inside my head". I literally can't leave it. 24/7, I'm in my head even when I'm sleeping, I can't escape it. And neither can you. All of my perceptions, everything I see, touch, or smell is filtered through my brain which is in my head.

What's odious then, isn't the statement itself, but the implication that I could just "shake it off" with just the right set of magical thinking. The problem then, is everybody who claims "it's all in your head", proclaims the problem solved, and walks off with their fingers in their ears, not listening to people suffering, not helping them "get out of their heads", not even trying to help get to that place of magical thinking that would fix everything.

They say the solution is "in your head". If it is, they're a right shite bunch of bastards for keeping this magical thinking to themselves and letting the rest of us suffer. If instead we focused on listening to the people suffering, and have identified that it's in their heads, then how do we get them out of it? How do we expand their consciousness to be "outside" their heads? How do we modify their brain so the head they're in is different? We have all sorts of drugs for that, both legal and illegal, as well as a host of new therapies, some approved by the FDA, as in "has a scientifically proven effect", using magnetic fields applied to the brain, eg TMS (Transcranial Magnetic Stimulation), to help people get their heads, which they live 24/7 in, to be different ones than the ones that are giving them so much trouble!

Thanks to doctors actually listening to patients (which is a revolutionary concept, I know. Not all doctors are super geniuses, but the ones who are able to listen to people who's problems are "in their heads" are all smarter than those who dismiss people's problems for being "in their heads". Especially neurologists, who have dedicated their career to the study of what's inside heads.), people are getting better, healing the brain, and once again living fulfilling lives, with more than 3 spoons a day of energy. At the worst of it, watching Netflix was too exhausting. Concentrating enough to write code was out of the question. After TMS, powerful psychiatric medication, a course of psilocybin and other off label courses to help me "get out of my head", and a huge amount of talk therapy on top, I'd now consider myself cured of whatever lingering after effects of Covid and the pandemic I suffered. It took a lot of work, I still live "in my head" but I'm able to leave my bed enough day of the week, and even leave my house most of them as well.

Feel free to tell me my problems are in my head so long as you're going to help me get out of it; help me pay for doctors, help me get to the doctor, help me pay for therapies and therapists and actually get to them, help me navigate insurance and get on disability while I need it, help me with housework while it's too much for me to manage.

"It's in your head" is the beginning of helping to figure out how to solve the problem, not the solution it and of itself.

[RugnirViking]

> The problem then, is everybody who claims "it's all in your head", proclaims the problem solved, and walks off with their fingers in their ears, not listening to people suffering, not helping them "get out of their heads", not even trying to help get to that place of magical thinking that would fix everything.

I think that a lot of this is reading into attitudes that arent really there. Doctors see a lot of people, and when they determine that an illness is phychosomatic, there is nothing they can do about it. There is no treatment they can proscribe, no medicine that can make it better. People have tried all sorts of tests for helping people with psychosomatic issues. It turns out these instances are specific to people and their circumstances.

So after they determine the illness is in your head, and then leave it at that without helping, it sure can seem cold. But think of it from their perspective; what else could they do?

[fragmede]

There is plenty doctors can do about it. We have a vast array of medications that address "the head", from anti-psychotics to Zanax. They're the one with the MD, they're the one with the ability to prescribe medication, not to mention TMS and other therapies.

If someone had to get a limb amputated, we don't just throw them back out into the wild and say "have a good life!" We give them occupational therapists and caregivers to help them live their new life.

[treprinum]

"It's in your head" is typically not meant politely and not a sober sign of resignation, rather accusation of simulating the illness.

[seanmcdirmid]

Even if they don’t, they will always keep “it’s all in your head” as a possibility until they can rule it out. The problem is that it actually turns out to be that some percentage of the time. And of course, there are varying capabilities of doctors with varying knowledge who have different chances of figuring out what really is wrong with you. ChatGPT might be an improvement here.

[senectus1]

This screams more of a institutional bureaucracy issue and less a medical science issue.

GP's are part of a system that requires they churn through a lot of people quickly. this dramatically lowers the in depth research and reasoning they can perform.

[seanmcdirmid]

You shouldn’t stop at a GP, if they can’t figure it out right away they should have referred you to a specialist pretty quickly.

[whimsicalism]

I think it is certainly true, but I also think that lay people significantly underestimate psychosomnia and the power of placebo and having a more active lifestyle.

[treprinum]

This was very different; prior to that I used to do 1-2h of strong cardio or lifting activity a day, was studying at multiple universities and worked multiple consulting gigs. This was like being hit by a train suddenly, going from hero to zero. I've noticed that positive thoughts helped but I attribute it to brain being low on processing power and negative thoughts taking more processing power/energy, causing even more problems. I had a stroke-like experience where I could no longer read text, locate symbols, follow visual clues which told me there was some problem with visual cortex VC2 or VC4 and I could perfectly see delineation between different "algorithms" running in my brain for visual processing and they seemed to be running low on fuel. Quite amazing experience for a Deep Learning researcher but would never wish it to anyone.

[whimsicalism]

Yes, was just trying to comment on the overall broader critique of the medical sphere you were providing. Your story sounds very personal to you and I am not commenting on that.

[treprinum]

I really think it's the other way round, a physical issue that might manifest in some psychological phenomenon due to a lack of brain processing capacity and doctors just take it the other way round, because it's much easier to put an "anxiety sticker" on someone than figure the real underlying problem out. There are even some psychiatrists that consider all mental issues to be problems with brain metabolism, i.e. physical problems manifesting in psychical ones.

[whimsicalism]

> There are even some psychiatrists that consider all mental issues to be problems with brain metabolism, i.e. physical problems manifesting in psychical ones.

Yes, because medicine is ultimately a customer-serving profession, there will be plenty of people saying the things that people want to hear because they are paid to retain customers and people elevate things that are similar to what they want to hear.

People are very uncomfortable with the mental, hence it is now popular to hear very mechanistic explanations of why someone is depressed, etc. about 'brain chemical imbalance' because it makes someone feel less like it is something wrong with who they are as a person (the mind-body dualism is still very present for most people in Western cultures). Of course, ultimately everything (including the functioning of our mind) is mechanistic, but people seem to be more comfortable with very mechanistically couched explanations as compared to 'something is wrong with my mind!' even when the implications aren't all so different.

[treprinum]

LC research shows that there are at least three factors going on that might affect functioning of the brain:

1) damaged endothelium with possible microclots clogging up small vessels

2) spike protein reservoir likely causing cellular-level iron deficit (anemia)

3) mitochondrial dysfunction

Some recent research even shows brain hypoperfusion and different levels of oxygen in each hemisphere!

Now ignoring these factors is in my opinion lazy science and a convenient way for medical professionals to state "it's not my problem, go somewhere else, I just want my regular routine without any complications. Go see a shrink".

[gerbilly]

> This was very different; prior to that I used to do 1-2h of strong cardio or lifting activity a day, was studying at multiple universities and worked multiple consulting gigs.

I'm going to suggest that with this intense pace this might have happened one way or another. Take it from someone who has been there.

When we push too hard for too long, and ignore our bodies and minds pleas for rest, at some point the body is going to put the brakes on us.

I don't think this is necessarily COVID specific, my speculation is that long COVID is the kernel around which the fatigue episode crystallised, and thatif it hadn't been COVID it would have been something else.

[treprinum]

My theory is that as COVID depletes a month-worth of NAD+ in like 3 days, it leads to energetic deficit throughout the body, and the weakest links start failing first. So I assume I had some predisposition coming from my intense lifestyle and COVID just initiated the domino effect. I wish I knew about NAD+ prior to that, I might have skipped it altogether if I resupplied it right away.

[gerbilly]

Interesting theory but I wouldn't be so sure. I've been through healing journeys where the websites suggested all sorts of deficiencies and supplements, but in the end I came to believe I just needed to slow down.

[treprinum]

We know that COVID depletes NAD+ reserves and NAD+ is the main electron transport molecule in the body (second one is FAD+ in some cells in the brain). So if you suddenly run out of electron transporter, it would inhibit most of your systems, making you tired all the time, and the systems that are already operating near their maximal capacity will start failing. This might kick off a chain reaction that is later transformed into condition we call long covid. It would also explain why it is different for each person as everyone has different organs in bad shape and why people with certain organ damage have similar symptoms.

[rzwitserloot]

> I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.

The vast majority of medical researchers agree with you.

> started taking about 50 different supplements with any "word-of-mouth" evidence from Reddit forums

Just taking every chemical under the sun because some random jane said 'hey it worked for me' is not better, obviously.

Anti-quackery activists and doctors in general are telling you that taking a boatload of supplements based on ads and shills is unlikely to help (you got real, real lucky here), and is quite likely to cause serious damage, and also takes you mostly out of the medical sphere of influence entirely - whatever weird results come up when medical professionals run some tests are now tainted by all the stuff you are taking.

An entirely separate problem is that a combination of an ever expanding menu of medical interventions that we (humanity) knows about and an aging population means that healthcare as a principle is effectively unaffordable without massive tax increases which the population votes against. Hence, the healthcare that can be provided is gruff and fast, and cannot cater to complicated cases like yours. Which has to be very frustrating for you.

[treprinum]

So if I understood you correctly, you are complaining I got better because I took supplements without a prior medical professional approval because other folks discussing long covid reported improvements from taking them? Cycling through dozens of specialists across two years without a single one finding anything, yet barely existing? Did I spoil your pristine machine learning dataset? Are you serious?

[tim333]

Yeah it seems logical that trial and error with the "hey it worked for me" stuff probably has more chance of working than doing nothing.

[kdmccormick]

Between the supplements and the rowing, do you have a sense if one or the other had a greater impact?

Asking because "take a multivitamin" and "exercise daily" seem to be very standard pieces of medical advice. "Take 50 specific supplements", not so much.

[treprinum]

I think it was all of them together, I basically tried to go all-in as my previous partial attempts never turned into stable improvements. I don't think without rowing machine I would get better as I wouldn't improve my blood flow, but the exercise alone didn't lead anywhere before (I tried it for 3 months a year before that).

[tornato7]

I had somewhat of a similar experience treating a different condition I had. I wanted to take the scientific approach of taking one supplement at a time and measuring my response, but I ended up taking everything at once, and that worked wonders. But I'm still not sure if it was one specific thing that did 90% of the heavy lifting or if each one did 5%.

[treprinum]

Read this, the doctor had only success if he combined multiple things together and has lab data showing no effect when either of them was taken separately:

https://xdrx.substack.com/p/how-i-recovered-from-long-covid-...

This could help your scientific brain a bit ;-)

[seanmcdirmid]

> I really think medical science gets many things wrong and knows only a small piece of puzzle on how the human body works, and people with long covid are stuck in that knowledge gap.

Medical science is definitely limited. Studying a human system is essentially reverse engineering combined with something we can’t create in the first place. So doctors accumulate data, somehow make progress on life expectancies, but still a lot is unknown, and they don’t really claim otherwise.

[LudwigNagasena]

What supplements have you been taking and what is your diet?

[treprinum]

I switched to carnivore 100% for a month when I started improving. I was taking mitochondrial supplements like megadosing B1/B2/B3/Niagen/NMN, CoQ10 + PQQ, L-carnitine, R ALA, pterostilbene. I took 1000-2000mg bovine lactoferrin with up to 120mg iron bisglycinate and 25-50mg benadryl for nights. I mixed my own AXA1125 (BCAA, Glutamine, NAC and Arginine + vitamin C) and took about 50g a day of that. I took endothelial stuff like nattokinase, serrapeptase, aspirin, diosmin:hesperidin, aescin, curcumin, quercetin, K2, ginkgo, pycnogenol/OPC, omega-3, kyolic, hawthorn berry. I ate 1 non-sweet chocolate a day (100% Lindt) to raise adiponectin and PQQ. I took like 5g of magnesium bisglycinate and potassium citrate a day. Daily workout was important even if it sometimes went to painful headaches which I controlled by ibuprofen and tylenol (the first two weeks were particularly horrible). Lately I added stuff like astragalus, artemisinin, dandelion root, boswellic acid, trans resveratrol, red beet, PEA + luteolin. I feel 1000x better than in February when I thought I could die at any moment.

[candiddevmike]

Good luck unpacking all of that and coming off of it. A few of those things you probably shouldn't be on (daily aspirin), a lot of it you shouldn't stay on (all of the *ase, combined with aspirin is a huge bleed risk), and most of it has no evidence around it on examine. I think the exercise helped more than your cocktail of woo.

[treprinum]

That's where I think you are wrong, read my earlier comment here:

https://news.ycombinator.com/item?id=36862855#36865016

COVID seems to be an endothelial illness, i.e. preventing blood from delivering nutrients and oxygen to cells. Moreover, spike protein seems to act as iron transport inhibitor hepcidin meaning you might end up with a lot of iron outside cells with cells getting into functional anemia. -ases + 100mg aspirin were about trying to break down "microclots" for which I didn't have a direct evidence as no lab was willing to do the test but only indirect evidence from some Australian medical doctor that only started recovering when adding -ases + aspirin + endothelial stuff to his mix.

See:

https://xdrx.substack.com/p/how-i-recovered-from-long-covid-...

[Exuma]

Wow, thats quite the list. Saving this in case I know anyone with similar problems.

My dad lost his smell sadly

[japostoles]

Please see my comment on the parent -- my lingering symptom was loss of smell, along with some cardio issues. While I haven't tested the cardio side "for real, for real" yet, I'm a couple months in with that concoction and my sense of smell is back to what I remember prior to my covidx2 experience.

[dunefox]

Would have been interesting if you had logged your biodata with an Oura ring, or so. I'm planning on doing something like this to get out of a kind of fatigue and sleep problems. I also have a rowing machine, incidentally.

[treprinum]

I only tracked data with my smartwatch, my resting HR was basically going down from over 100 to under 60 in 1 month. Oxygen level was 95-99% all the time, but I never got ScvO2/SvO2 measured in the hospital (some say LC folks have only 20-40% SvO2 which is ICU level).

[dunefox]

Which watch? They're differing quite a lot in accuracy. Heart rate is mostly fine, but I wouldn't necessarily trust Oxygen or sleep phase tracking. https://www.youtube.com/@TheQuantifiedScientist

[treprinum]

I think it was one of the Huawei watches.

[empressplay]

much of what you're taking helps with Mast Cell Activation Syndrome, which is common with long Covid

[treprinum]

It's possible it was a component of that but I never specifically tracked MCAS symptoms. I basically took everything anyone remotely mentioned as helping them or appearing in some medical literature if it was OTC ;-)

[japostoles]

I had success with the ingredients listed here: https://detoxthespike.com/#ingredients

You can find most of those quite easily, although I had a bit of a hard time getting my hands on some of those enzymes. Been taking that recipe for a couple months now and my sense of smell has returned to full blast. For reference, I got COVID two times.

[Exuma]

Wait.. I'm trying not to get my hopes up but my dad lost his smell for almost 2 years now. The most he's gotten is a single whiff of grass like a few months ago and it made him cry.

Are you saying that if I bought this detoxthespike thing it might help? Obviously nothing is certain, but unless I'm misreading your comment the above link you sent helped with your smell?

[japostoles]

I had a few long covid symptoms -- for background, I got covid in early March of 2020, and one of the symptoms I had was complete loss of smell for about a week after, followed by a recovery period that never got me back to 100%. After detoxing with the ingredients in that formula, within a couple weeks my sense of smell is back to what I consider normal, and I feel more clear overall, for lack of a better phrase. I am still taking this formula daily, but more for general health, along with a supplement called Wellness Formula.

I'd say if your Dad is experiencing symptoms around his sense of smell, it wouldn't hurt to try! Most of the ingredients are easy to get online and are great for general health, regardless.

If you grab the ingredients (or a bottle), let me know how it goes! I've been recommending this concoction to people quite a bit lately, and I don't know if it's placebo or what, but it seems to help.

In either case, all the best for you and your father!

[treprinum]

I started recovering after 2.5 years so even if things look hopeless, they might not be.

[throwuwu]

> started slowly doing daily rowing machine workouts and within 1 month I was 1000x better.

If your cardio capacity drops enough you get all the same symptoms as long covid. This probably happened to a lot of people from being less active over the pandemic or from getting covid or both.

[treprinum]

I managed to bike a year earlier up to 40 miles at a time, but the effect was not lasting, i.e. I had a massive debilitating regression regardless of my will and pain bearing abilities. Only this time as I added so many supplements covering many bases I started experiencing lasting improvement with no major regressions. I also do much less cardio than a 40 mile bike ride, just 30 minutes a day on a rowing machine.