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Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @02:49PM (#27824646)
One of those cases here. Symptoms: suddenly out of energy, occasionally suddenly being unable to spell, even mild physical exercise leaves me floored (and I was pretty fit for my age prior to this).

So, 17 months in: it's still not back to where it used to be but if you think of it in terms of trends instead of absolutes it is definitely still improving. The downs are less far down, the fog is lifting and the energy levels are creeping back up. But still, you can have down days every now and then. But they are getting fewer and further between and the downs are less far down. I hope to get it completely behind me one of these days.

When I had COVID I was just one small step away from calling for an ambulance but that was rock bottom, after that it got better and I will always wonder if I had called them earlier if I could have avoided the worst of this (by having some oxygen earlier on and maybe avoiding some of the damage). But I figured other people had it much worse than I did (and I still believe that was the case). March last year was a pretty crazy time.

Re:Burden of post-Covid-19 syndrome and implications for hea... by mygoodaccount on Tuesday July 13, 2021 @02:54PM (#27824723)
Another one here (Woman, 24 y.o.). Contracted COVID, had a terrible three-weeks of infection. Nine months later, I am having weekly heart palpitations, I'm constantly fatigued and fogged in the mind and my lung capacity is half what it used to be - I now require an inhaler to go on my runs. I know several women my age experiencing far worse.

Long COVID should not be ignored.

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @02:56PM (#27824762)
Ah yes, the heart thing. Forgot to mention that because it hasn't happened for a couple of months now but I would wake up at night every now and then with my heart going like I just ran a marathon. But that fortunately completely went away.

As for lung capacity: I used to play saxophone pretty fanatically and I think that is one of the reasons I got through this with a relatively low amount of damage.

Re:Burden of post-Covid-19 syndrome and implications for hea... by mygoodaccount on Tuesday July 13, 2021 @03:00PM (#27824819)
> As for lung capacity: I used to play saxophone pretty fanatically and I think that is one of the reasons I got through this with a relatively low amount of damage.

Funnily enough, I used to play the flute and sing before contracting COVID. With my lung capacity halved, my ability is nowhere near what it used to be. Long COVID has taken all my hobbies away from me: running, singing, hip-hop dancing. If anyone knows of any support groups relating to Long COVID, please let me know.

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:04PM (#27824868)
Gah that sucks, I really feel for you. But: you will recover. For the longest time I thought that I wouldn't and then bit by bit it got better. If you can find an exercise bike I would really recommend you find one, it is super motivating to see your distance creep up day-by-day as you regain your strength and wind.
Re:Burden of post-Covid-19 syndrome and implications for hea... by AnimalMuppet on Tuesday July 13, 2021 @04:13PM (#27825715)
Have you tried postural drainage for your lungs? I ask because if you've lost half your lung capacity (and I expect a singer and flute player would know), then you must have some kind of junk in there.

For those not familiar with the term: You position yourself with your head a foot lower than your hips (and your back straight). You hold that for 15 minutes or so. You let gravity pull the junk out of your lungs down to where you can cough it out. Warning: It's not fun. First, your head feels like it's going to explode from the lung pressure. Second, when a chunk comes out, oxygen starts hitting an area of your lungs for the first time in maybe months. That hurts. (Or so my daughter says. She had to do this.)

Re:Burden of post-Covid-19 syndrome and implications for hea... by MaxBarraclough on Tuesday July 13, 2021 @04:43PM (#27826091)
That sounds like the kind of thing you should do on the advice of your doctor, rather than on the advice of a stranger on the Internet.
Re:Burden of post-Covid-19 syndrome and implications for hea... by waterhouse on Tuesday July 13, 2021 @05:42PM (#27826659)
https://en.wikipedia.org/wiki/Postural_drainage#Risks

"Postural drainage is considered safe and effective, but may cause some side effects. The procedure is discontinued if the patient complains of headache, discomfort, dizziness, palpitations,[3] fatigue, or dyspnea. Patients may be dyspnic after the various manuovers, since the head-down position increases the work of breathing, reduces tidal volume, and decreases functional residual capacity (FRC).[citation needed]"

Re:Burden of post-Covid-19 syndrome and implications for hea... by AnimalMuppet on Tuesday July 13, 2021 @05:06PM (#27826326)
Well, my daughter did it on the advice of a retired nurse (her grandmother).
Re:Burden of post-Covid-19 syndrome and implications for hea... by fragmede on Tuesday July 13, 2021 @03:44PM (#27825370)
There’s are many Facebook groups, and a Slack. (No idea the overlap.)

http://survivorcorps.com

The particular FB group I'm in is called (creatively enough) "Long Covid Support Group", but a search there reveals there are many more.

My email is in my profile if you want to connect further over this. I consider myself mostly healed by this point (infected March 2020) and can share my vitamin regime (its efficacy is anecdotal, my sample size is 2) but I still have lingering health issues over a year later.

Re:Burden of post-Covid-19 syndrome and implications for hea... by Invictus0 on Tuesday July 13, 2021 @09:32PM (#27828484)
We have a lively long covid discord group here: https://discord.gg/HcxrH7xZ
Re:Burden of post-Covid-19 syndrome and implications for hea... by loopz on Tuesday July 13, 2021 @03:49PM (#27825453)
Breathing exercises and meditation/yoga may help, both with heart and lungs. Worth a try along with long covid support/meetups.
Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @03:54PM (#27825516)
Yep. I do breathing exercises daily. It helps with the dysautonomia (long covid causes dysautonomia) too.

You may want to look into the Airofit Pro: https://www.airofit.com/

Re:Burden of post-Covid-19 syndrome and implications for hea... by loopz on Tuesday July 13, 2021 @05:53PM (#27826735)
One may also learn Ujjayi breath. It needs no technology and has other benefits.
Re:Burden of post-Covid-19 syndrome and implications for hea... by varjag on Tuesday July 13, 2021 @03:17PM (#27825020)
Sounds terrible. Did you (and u/mygoodaccount) have loss of smell among the symptoms? I recall reading somewhere that it correlates with protracted recovery.
Re:Burden of post-Covid-19 syndrome and implications for hea... by ModernMech on Tuesday July 13, 2021 @04:39PM (#27826022)
My sister had this. Even today (5 months after infection) she says some things taste and smell funny. She can't eat mint ice cream anymore because she says it tastes like cigarettes.
Re:Burden of post-Covid-19 syndrome and implications for hea... by rutherblood on Tuesday July 13, 2021 @11:40PM (#27829435)
Can relate. Been 3 months since I recovered. Sense of smell has recovered definitely but since the past 2-3 weeks I've noticed it's still not fully there. A rare house plant blooming in the night which for everyone at home triggers a strong sweet fragrance which can be sensed even on the second floor, for me it was like a lingering placebo. Additionally, there is this weird stench that permeates everything I eat. I can't explain it, just a kind of smell I've never come across but now have to every other hour because it colors pretty much any earlier-pleasant-smelling thing
Re:Burden of post-Covid-19 syndrome and implications for hea... by ModernMech on Tuesday July 13, 2021 @11:50PM (#27829511)
> Additionally, there is this weird stench that permeates everything I eat. I can't explain it, just a kind of smell I've never come across

Yes, this is exactly what she describes. The closest she could get to describing it was "cigarettes" when I pressed her, but she really insisted should couldn't even characterize it.

Re:Burden of post-Covid-19 syndrome and implications for hea... by rutherblood on Thursday July 15, 2021 @01:56AM (#27841827)
Is she having gastrointestinal problems too? Like digestion issues attimes, weird random pains in the abdomen, around the liver or stomach? I've been facing these since the last 2 months.

Sometimes I wonder how much our sense of smell is connected to the gut microbiome.

Re:Burden of post-Covid-19 syndrome and implications for hea... by ModernMech on Thursday July 15, 2021 @08:17AM (#27843865)
Yes but hard to say if they are due to COVID since she’s always had GI issues, which cause her to avoid a lot of food (eggs, milk, fruits).
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:19PM (#27825046)
During the first three weeks, yes. But afterwards that came back to fairly normal levels quickly.
Re:Burden of post-Covid-19 syndrome and implications for hea... by satysin on Tuesday July 13, 2021 @03:44PM (#27825375)
I am having daily heart palpitations and they are almost unbearable now. Sometimes I wake up and feel fine almost all day but not a day has gone by in the past two months where I don't have some kind of chest discomfort around my sternum/xiphoid process.

I have had a whole bunch of scans and everything is normal. I will be having an endoscopy next week to hopefully get to the bottom of it. I am 'hoping' it is something simple and obvious that they can treat. So far everything ends up being "well it's not $insertMedicalCondition so let's check for $insertSomeOtherMedicalCondition" :(

Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @03:57PM (#27825539)
This sounds like dysautonomia.

I have dysautonomia, which I had long before (probably) getting COVID-19. I have a rare form of dysautonomia. But, dysautonomia does happen, relatively frequently, as post-viral cases.

The good news is that post-viral dysautonomia has high potential for improving and even (realistically) going away. Rest will be the best treatment.

Check my profile if you want to email me or want help.

Re:Burden of post-Covid-19 syndrome and implications for hea... by treeman79 on Tuesday July 13, 2021 @04:28PM (#27825886)
I acquired dysautonomia from toxic exposure.

Turned out to be an underlying autoimmune disorder (Sjogrens) and a clotting disorder “factor 5 Leiden”

The exposure triggered both from mild barely noticeable problems to I was completely disabled.

Took years to figure out it out.

When I got covid it was basically the same event again. Took months for body to calm down again.

Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @04:34PM (#27825957)
Yep, I am in the exact same position as you. I lost at least a year of my life due to this post-viral syndrome. I am back to where I was prior to getting COVID-19, though. When I was really sick in March 2020, I thought "wow, I haven't been this sick in a long time". It really was like going back to square one. It was super scary, too, given the health problems that I have.

I have autoimmune autonomic ganglionopathy (autoimmune dysautonomia), which is believed to have caused my type 1 diabetes (autoimmune and insulin-dependent). It is also believed to have caused other endocrine problems and other neurological problems (I have another immune-mediated neurological disease affecting my peripheral nervous system). Anyways, autoimmune autonomic ganglionopathy is very rare, and I have the antibodies (about half of people do not), so I am tremendously lucky.

Anyways, I would be interested in chatting with you. If you want to do so, my email is in my profile information. I am very resourceful and I have tips.

Re:Burden of post-Covid-19 syndrome and implications for hea... by fragmede on Tuesday July 13, 2021 @03:53PM (#27825506)
Have you managed to get medication (aka beta blockers) for the palpations? I am not a doctor but I strongly recommend getting a doctor to prescribe you some if you haven't already.

What's been particularly frustrating with long covid is because it's so new, I've had to have awkward pushy conversations with doctors to get me treatment I deserve. You can't get high off beta blockers, which helps assuage my feelings of being an addict engaging in drug seeking behavior, simply trying to get my heart rate under control, but the medical industry has largely failed patients here. The only reprieve is that enough healthcare professionals also got sick, so the fact that there's nothing that shows up on scans of my heart isn't taken as fact that there's nothing wrong with it.

Re:Burden of post-Covid-19 syndrome and implications for hea... by satysin on Tuesday July 13, 2021 @03:57PM (#27825534)
Last week my doctor prescribed me something called Stresam (aka Etifoxine). Apparently it is a lot like the benzo Lorazepam (Ativan) but without the whole benzo addiction problem.

I had never heard of it nor know anyone on it before but apparently it is good. Too early for me to say if it is personally. I want to avoid any kind of addictive medication if possible.

Re:Burden of post-Covid-19 syndrome and implications for hea... by sethammons on Tuesday July 13, 2021 @06:31PM (#27827061)
I had an awful cold or sickness about a year ago (including messed up taste and smell!) and since then I've developed heart racing, panic attacks, and working out is sooooo hard now. My strength is down, my cardio sucks, and just getting myself to work out is a chore. I can feel trouble breathing sometimes. My heart can race from sitting or walking up stairs. I was pretty dang fit and working out hard 5 days a week. Now getting 1-3 days in in a week is near impossible due to being tired.

I tested negative for covid antibodies. I'm not sure about all the data on "post covid 19 syndrome" but I check a lot of boxes for it but didn't test positive. My wife is in a similar block. Just tossing some anecdata out there.

Re:Burden of post-Covid-19 syndrome and implications for hea... by hourislate on Tuesday July 13, 2021 @07:19PM (#27827418)
Maybe you ought to take it easy and walk instead of running. Is it possible you might be damaging your lungs and not letting them heal?
Re:Burden of post-Covid-19 syndrome and implications for hea... by atatatat on Tuesday July 13, 2021 @06:35PM (#27827097)
I (anecdotally) linked the heart heart thing to viral waste in heart valves, clearing which can be helped by wild blueberries (antioxidants, which yes, are real!).
Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @03:16PM (#27825013)
I hope this is taken the right way, but have you tried "vitamins" (broadly speaking)? Some I have seen with specific effects: Niacin, Black Seed Oil (Nigella Sativa), Magnesium megadoses, etc. etc. Don't dismiss these as "quack medicines", I've recovered from severe chronic illness thanks to some of these... I could expand if people ask, but really it's quite easy, especially for the HN crowd, to level-up rapidly on healing yourself or at least giving yourself the best chance to do so.

The greatest concentrator of such info on the whole internet, is, as far as I can tell, https://twitter.com/grimhood - follow him and get a feel for the info he's spreading, he has very valuable information on all sorts of healing protocols.

Lastly, one that will no doubt be most controversial, but also has promising anecdotes: Ivermectin.

[edit] here come the downvotes, for those that do, note that downvotes, at least on HN, are not meant to express disagreement, they are meant for content that is objectionable for other reasons.

Re:Burden of post-Covid-19 syndrome and implications for hea... by sebmellen on Tuesday July 13, 2021 @03:23PM (#27825097)
I am not sure what I think of your comment, but I think it at least deserves discussion.

I have used said supplements before. In fact, I have a close friend who is very enamored with supplements and has about 50 different pill bottles in his medicine drawer.

Out of curiosity, I once spent two weeks taking about 25 pills a day at his recommendation, and I'm afraid they did not do very much for me — at least that I could noticeably discern.

The only supplement/herbal medicine I've had success with is St. Johns Wort, but I've been strongly discouraged from using it by a psychiatrist who emphatically emphasized that an SSRI is a much safer and more controllable way to achieve the same effects if need be.

Magnesium deficiency is relatively common, though I wonder if that isn't more of a dietary issue.

Re:Burden of post-Covid-19 syndrome and implications for hea... by fragmede on Tuesday July 13, 2021 @04:01PM (#27825587)
I mean, if you're basically fine, then the supplements, which have had studies run, aren't really going to do much for you unless you're really in tune with your body. For extreme cases of long covid, however, the right set of vitamin supplements are life saving. (I'm not exaggerating. eg https://www.cambridgeindependent.co.uk/news/long-covid-patie... )

There are absolutely scammers selling trash (there's someone selling stem cell injections as a cure) and fuck them. But don't ignore the very real problems that patients are experiencing, and that they're helped by simple remedies that aren't yet proven by science. Science will catch up, but people are suffering dying in the meanwhile.

Re:Burden of post-Covid-19 syndrome and implications for hea... by sebmellen on Tuesday July 13, 2021 @10:18PM (#27828830)
Very interesting article, thank you for the link! When administered and monitored with some degree of medical oversight (as was the case for the article’s subject), I think such treatments are wonderful!
Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @04:11PM (#27825695)
This is my stance exactly. It doesn't hurt to try, and you will learn a lot in the process. Also, some of these are proven by science, just remember there is a lot of science out there and doctors are only aware of a tiny fraction of it.
Re:Burden of post-Covid-19 syndrome and implications for hea... by heavyset_go on Tuesday July 13, 2021 @04:00PM (#27825565)
> The only supplement/herbal medicine I've had success with is St. Johns Wort, but I've been strongly discouraged from using it by a psychiatrist who emphatically emphasized that an SSRI is a much safer and more controllable way to achieve the same effects if need be.

Yep. From Wikipedia[1]:

> On average, lead levels in women taking St. John's wort are elevated about 20%.

It's also a relatively dirty drug, with effects on typical monoamine and GABA reuptake, MAO-A and MAO-B inhibition and is an inhibitor or inducer at pretty much every relevant enzyme that breaks down common medications.

I wouldn't want to become dependent on something like that because the withdrawal syndrome could be pretty nasty compared to something relatively more selective and understood like an SSRI.

Even switching from SJW to something else might be tricky because of the enzyme induction.

[1] https://en.wikipedia.org/wiki/Hypericum_perforatum#Antidepre...

Re:Burden of post-Covid-19 syndrome and implications for hea... by ericd on Tuesday July 13, 2021 @03:32PM (#27825219)
I'm no expert on any of this, but I think the theory is that many of these don't have a single strong directional effect like most single-compound pharmaceuticals do, but that if your body is short on something, and that's causing an issue, it can grab something from the cocktail of compounds, and that can help. If it's not, then it doesn't.
Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @03:37PM (#27825268)
Many of the recommendations are vitamins and minerals, that are common deficiencies (magnesium is a notorious one, because of soil depletion etc.). It's reasonable to suspect that recovery from an illness finds one in a nutrient-depleted state.
Re:Burden of post-Covid-19 syndrome and implications for hea... by ericd on Tuesday July 13, 2021 @03:46PM (#27825406)
Ah yeah, I was thinking more about the plant extracts. But your body is probably decent at filtering out the vitamins and minerals it doesn’t need (the water soluble ones, at least, be careful with fat soluble ones like vitamin D).
Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @04:07PM (#27825642)
Obviously both vitamins and plant extracts need to be treated with care, after having done thorough research. Thankfully there is plenty of information available, and as I've said the HN crowd should be especially well equipped for this.
Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @03:26PM (#27825125)
The experience you're describing doesn't disqualify supplements, you say you've taken "25 [random] pills", this is not what I'm advocating. There are various supplements, be it vitamins or plant extracts, that have definite medicinal effects. It should go without saying, really.

For illustration, just go on pubmed and search for "nigella sativa" (black seed oil).

Re:Burden of post-Covid-19 syndrome and implications for hea... by avgDev on Tuesday July 13, 2021 @03:39PM (#27825308)
I just want to add a bit to this. While there is a lot of snake oil supplements, there is a also quite a bit research on some supplements helping.

I'm speaking from personal experience here. I suffer from a mild case of Erythromelalgia. During typing my fingers and hands would get red and feel warm. My case is most likely secondary caused by some nerve damage from a medication I took. There is a doctor who had severe case of it and has done some research on using magnesium/ala and it made his condition 95% better and he was able to return back to work. I have been following his protocol for about a month now, and it has made an incredible difference.

Anyone who is suffering from an annoying illness, that is not aggressive and require immediate treatment, should try research possible supplements and diets. Clean/healthy diet is always good.

Re:Burden of post-Covid-19 syndrome and implications for hea... by abz10 on Tuesday July 13, 2021 @03:32PM (#27825213)
Megadose B3 2000mg per day does seem to be commonly effective. The theory is NAD+. Gives me a headache so an aspirin is needed as well but was one of the first treatments that pulled me out of fatigue.
Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @03:35PM (#27825247)
Thank you. Yes Niacin (vitamin B3) megadoses are seemingly very effective for a wide range of ailments.
Re:Burden of post-Covid-19 syndrome and implications for hea... by krastanov on Tuesday July 13, 2021 @03:44PM (#27825364)
> [edit] here come the downvotes, for those that do, note that downvotes, at least on HN, are not meant to express disagreement, they are meant for content that is objectionable for other reasons.

This is factually wrong. Search for posts by dang frequently explaining traditions and norms in this forum, including the downvote very much being a standard way to express disagreement (although it is better to voice your disagreement in a comment if you think the conversation would be interesting).

Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @03:58PM (#27825546)
I didn't know that, frankly I remember reading, many years ago, people saying that downvotes are not meant to express disagreement. Maybe that changed, I personally don't agree with this and only consider downvoting if someone is not being civil, is not interested in discussion, or really voicing something obviously false. I was careful with my comment, I'm not selling anything, I was just interested in maybe nudging some people towards this information.

[edit] seems I'm not the only one: https://news.ycombinator.com/item?id=19406299

Re:Burden of post-Covid-19 syndrome and implications for hea... by OJFord on Tuesday July 13, 2021 @04:30PM (#27825916)
It's often said, but as pointed out not the case, and ~never has been for as long as there was anything resembling policy - pg commented on it in early days.

Fwiw, I'm not really a fan of it (and don't do it) either. But it's a lot harder to upvote not-objectionable things (so many!) and not upvote things purely because you agree (tempting!) - so I suppose it makes sense. I've thought before about making a 'proof of concept' type commenting system where its designed around not/objectionable; the default as you scroll past things would be to up-vote them (automatically), only down-voting on intervention when 'this does not contribute to the discussion'. Meh, might be interesting, but I'm not interested enough that I've gotten around to it :).

Re:Burden of post-Covid-19 syndrome and implications for hea... by hourislate on Tuesday July 13, 2021 @07:18PM (#27827406)
All the things you mentioned are very healthy to take. You're not wrong in suggesting they're worth a try if all else fails. Don't know if they can cure anyone but what the hell do you have to lose at this point if you're feeling like shit from the Corona.
Re:Burden of post-Covid-19 syndrome and implications for hea... by heavyset_go on Tuesday July 13, 2021 @03:45PM (#27825388)
> Magnesium megadoses

If you're considering this (I wouldn't), be aware that milk of magnesia is a very effective laxative, and other magnesium salts like magnesium oxide etc work similarly.

Re:Burden of post-Covid-19 syndrome and implications for hea... by lambdaba on Tuesday July 13, 2021 @04:08PM (#27825656)
Yes indeed, I was giving hints for research, that will quickly reveal the best forms of magnesium to take (glycinate, chloride).
Re:Burden of post-Covid-19 syndrome and implications for hea... by satysin on Tuesday July 13, 2021 @03:37PM (#27825269)
Ever since having COVID back in March 2020 I haven't been the same. I still have regular fatigue but my biggest issue is chest pains.

For the past few months I have had worsening discomfort/pain in my chest. It was so bad a few weeks ago I ended up going to A&E thinking I was having a heart attack. They did an ECG, sonogram of my heart, chest x-rays, bloods, etc. My heart was fine so not a heart attack.

They put it down to either a panic attack (possible) or a gastro problem so I am going for an endoscopy next week however I have a feeling I will end up needing a CT scan or MRI as I had high lipase levels in a blood test a few weeks ago that makes them want to look at my pancreas in my detail. It isn't urgent as two blood tests since them have shown normal levels and it isn't getting worse.

Plus random abdominal pains all over yet an abdominal scan shows nothing out of the ordinary.

Basically COVID has fucked me up long term. When I actually had COVID it didn't feel like a big deal, just a bit of a cough for two days and a little drained. But two months after COVID I started getting a shit load of problems and over a year later it is no better.

37 year old male in France fyi.

Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @04:04PM (#27825613)
You may want to take a look at this: https://www.ohsu.edu/sites/default/files/2021-04/Long-COVID-...

It's basically a cheat sheet to long hauler's clinical presentations, along with the diagnoses that they get. It's all classified and stuff.

I am pretty sure that I got COVID-19 in March 2020, and it messed me up severely.

But, your heart problems could be dysautonomia. I had dysautonomia prior to getting COVID-19, though, and I have a rare form of it.

Anyways, according to that cheat sheet that I referred to, the palpitations could be:

"Arrhythmia related to myocardial, pericardial disease or PE, dysautonomia with POTS"

The chest pain:

"Chest wall pain, GI source, pericarditis, myocarditis, established CAD, thromboembolic disease, etc."

This is the ultimate site on fatigue. Unfortunately it is in Norwegian, so you have to use Google Translate for the website (and the PDF documents--which are great): https://www.kognitiv.no/psykisk-helse/ulike-lidelser/utmatte...

Re:Burden of post-Covid-19 syndrome and implications for hea... by dragontamer on Tuesday July 13, 2021 @03:40PM (#27825323)
I hear these stories and it makes me wonder if I somehow caught SARS way back in the early 2000s. Because these long symptoms people talk about were exactly what I felt back then.

There was some dramatic respiratory illness I got that took took months before I felt "like normal" again. I was a young teenager so I never felt like I needed to go to the emergency room. But the amount of time it took to recover back was insane.

I know I recovered by 6 months, but... yeah. That incident scared me for life. Sickness can be scary, not knowing if you'd ever get better from something...

I can't imagine the stress I'd feel today if some illness afflicted me for more than 6 months.

Re:Burden of post-Covid-19 syndrome and implications for hea... by timr on Tuesday July 13, 2021 @03:49PM (#27825456)
From personal experience, the symptoms being described by all of the posts on this thread overlap substantially with depression and anxiety. It's notable that the GP went to the hospital and was diagnosed with a possible panic attack. Panic attacks frequently cause your heart to race, skip, etc. Depression causes "brain fog" and fatigue, body aches, etc.

So far, ~all of the reports of "long covid" are anecdotal and post hoc. Which is not to say that they aren't real, but that there's no way of knowing what is causes by the virus, and what is caused by a year in which a significant portion of the population was isolated from contact and systematically terrified.

I've personally had "brain fog", insomnia, fatigue and distraction for the last year, and never had Covid. It's been a difficult, depressing, scary year, and a lot of people have these symptoms.

Re:Burden of post-Covid-19 syndrome and implications for hea... by dragontamer on Tuesday July 13, 2021 @03:52PM (#27825487)
Oh, I know when I was depressed (also as a teenager, but a few years after that). That was a different time and I can talk about that if you like.

But what hit me back then was definitely not depression and/or anxiety. It was some mysterious illness that took me out for a week (kinda typical), but then made me unable to "breath normally" for literally months. It was innately a physical condition: unable to breath, unable to sleep well, unable to feel physically good for months at a time.

A mental depression is... different. I know because I've been through both. In particular, depression doesn't have chronic multi-month breathing issues normally associated with it.

-------------

I only bring it up because the timeframes line up. SARS hit in 2003, roughly the time of my mysterious illness (though I never went to the doctor for it back then. I only knew about SARS because of COVID19 studies today).

Given that SARS and COVID19 have many similarities, I really do wonder if the experience I felt back then is anything like what people with long-COVID19 feel today.

Re:Burden of post-Covid-19 syndrome and implications for hea... by timr on Tuesday July 13, 2021 @03:59PM (#27825560)
> But what hit me back then was definitely not depression and/or anxiety. It was some mysterious illness that took me out for a week (kinda typical), but then made me unable to "breath normally" for literally months. It was innately a physical condition: unable to breath, unable to sleep well, unable to feel physically good for months at a time.

Sure. Pneumonia can easily cause that. It takes a long time to recover from it, even if you're young.

Fundamentally, "covid" is pneumonia caused by a particular virus, so it's not surprising that people (esp. people who had serious cases) might have similar kinds of lingering symptoms.

Re:Burden of post-Covid-19 syndrome and implications for hea... by cycomanic on Tuesday July 13, 2021 @05:24PM (#27826506)
You're wrong that long covid evidence is anecdotal. It is a clinical diagnosis though (i.e. it's diagnosed based on symptoms). I think you also severely underestimate the effect this had on people, and symptoms are not generally compatible with depression. Patients often show reduced lung capacity of 60%. The brain fog is also often much more severe than just not being able concentrate a bit, people can't do simple calculations, can't follow conversations, can't read more than a page in a book, immediately forget things they just talked about. Many people become completely unable to perform their usual tasks.
Re:Burden of post-Covid-19 syndrome and implications for hea... by timr on Tuesday July 13, 2021 @06:44PM (#27827156)
> You're wrong that long covid evidence is anecdotal.

Fine, convince me. Provide a citation from a study where:

1) the results are NOT gathered by survey from a self-selected population

2) the study is pre-registered, with endpoints determined in advance

3) the study is prospective, longitudinal and randomized

4) there is a control group

5) the participants are verified to actually have Covid

6) a significant effect is shown on the pre-registered endpoints

and I'll take your claims seriously. The only current study that I'm currently aware of that remotely comes close to this standard of evidence (but doesn't meet all of them) is this one: a controlled, retrospective study of 250,000 kids, which found that kids without covid had roughly equivalent long-term symptoms to kids who did have covid.

https://www.medrxiv.org/content/10.1101/2021.05.05.21256649v...

I bring up this study only to underscore the point: essentially all current "long covid" data is self reported and uncontrolled, and when you start to be rigorous, the claims of severity rapidly diminish. Here's a relevant editorial in Nature:

"Studies of long COVID thus far—nearly all from high-income countries—have been difficult to interpret or compare, not only because of the lack of a consistent case definition but also because of systematic selection bias of cases, often without appropriate controls....Meanwhile, community-based studies have raised questions about the representativeness of cases compared with the general population, especially those using online recruitment, with many studies relying on self-reported symptoms and without laboratory-confirmed diagnosis of SARS-CoV-2 infection. Selection bias becomes even more pronounced when people are recruited through online support groups, where very high rates of often nonspecific long-term symptoms have been reported, even in children." https://www.nature.com/articles/s41591-021-01402-w

> Patients often show reduced lung capacity of 60%

Citation required. See above for standards of evidence.

> The brain fog is also often much more severe than just not being able concentrate a bit, people can't do simple calculations, can't follow conversations, can't read more than a page in a book, immediately forget things they just talked about.

Citation required. See above for standards of evidence.

> Many people become completely unable to perform their usual tasks.

Citation required. See above for standards of evidence.

Re:Burden of post-Covid-19 syndrome and implications for hea... by dragontamer on Tuesday July 13, 2021 @07:17PM (#27827404)
> Fine, convince me.

Why do you need a control group? We know that typical people don't just randomly get coughs on a daily basis.

Anyway: https://jamanetwork.com/journals/jamanetworkopen/fullarticle...

A pretty small study (250-ish people) but plenty of evidence for long-haul COVID19, since ~20+% of them got long-haul COVID19.

-----------

Random, normally functioning adults don't have breathing issues under normal circumstances. There's just no need for a control group in that kind of study. The only question is how long do symptoms last for COVID19 patients.

There's a bit of self-selection since these individuals decided to get a COVID19 test to begin with. But otherwise, the % of long-haul COVID19 is high enough that we know its a real thing.

For you to be suggesting that long-haul COVID19 is entirely made up is just... ignoring the evidence we have available. You're making perfect the enemy of good: studies don't need to be "perfect" in every way to provide evidence.

-----------

Besides, you're playing "judo" with the argument. If you want to convince ME that long-haul COVID19 is fake news, YOU are the one who has to pull up the study indicating evidence in your favor.

I'm perfectly fine leaving this argument where it is and walking away. I don't _need_ to convince you of anything to be satisfied.

Re:Burden of post-Covid-19 syndrome and implications for hea... by timr on Tuesday July 13, 2021 @10:21PM (#27828851)
> Why do you need a control group? We know that typical people don't just randomly get coughs on a daily basis.

Because this is science, not a spread in the New York Times. And if you read the link to the paper I cited, you'd see that "typical people" do randomly get these "symptoms" on a regular basis (I'm coughing right now!) And in fact, once you control for this, you find out that some of what you thought was "long covid" was just...what happens in a normal population of people.

As for your paper, it fails the criteria established:

"COVID-19 symptom data were obtained at the time of acute illness or retrospectively recounted at a 30-day enrollment visit. A total of 234 participants with COVID-19 were contacted between August and November 2020 to complete a single follow-up questionnaire between 3 and 9 months after illness onset."

In other words, this is self-reported data. The control group isn't actually a control group, because the people in each group knew if they had Covid, and are self-reporting their own symptoms...in a survey about Covid. It's a recipe for confirmation bias.

A good study of this sort would follow N people over time, randomly selected and matched on various demographic criteria (age, weight, gender, etc.), split into known sero-positives and known sero-negatives. You'd then survey all of those people over time about a few selected health issues, without telling them you're doing a study about Covid.

A gold-standard study would find a way of objectively confirming the illness, and wouldn't rely on self-reported data (e.g. medical exam with lung volume test). But even if you can't do that, you can still do a lot better than this. This is just...meaningless. It's like taking a group of people who broke their legs in the last decade, and asking them if their leg hurts today. Sure, maybe some people have "long broken leg", but your experiment is a bad way to find out.

> Besides, you're playing "judo" with the argument. If you want to convince ME that long-haul COVID19 is fake news, YOU are the one who has to pull up the study indicating evidence in your favor.

Nope. Again, this is science. The burden is on the person making the claim to prove the claim. If you believe that Cooties are a thing, or that head shape predicts personality, or that fusion can occur at room temperature in a can of Mr. Pibb, I am not obliged to believe you simply because you want very badly for it to be true.

Re:Burden of post-Covid-19 syndrome and implications for hea... by dragontamer on Tuesday July 13, 2021 @11:20PM (#27829280)
> Nope. Again, this is science.

Your turn to demonstrate your science. Please, procure a paper that supports your point of view and simultaneously satisfies your requirements.

Science is not a black and white issue. There are "cheaper science" (surveys and other "lesser" studies), and there's "expensive science" (10,000+ experiments with control groups). Both are science.

But what you're doing isn't science at all. You're just shitting on other people's work without showing what you actually like. The papers I pointed out are in respected journals and respected methodologies, albeit cheaper than what you want.

But given your "standards", I'm convinced that the "studies" you want simply don't exist, either on my side of the argument nor on yours.

Re:Burden of post-Covid-19 syndrome and implications for hea... by timr on Thursday July 15, 2021 @03:54PM (#27849329)
> Your turn to demonstrate your science

It's not "my science". It's just "science".

The fact that you keep trying to personalize this only underscores the point that you're not coming at this rationally. You're engaged in advocacy, not science.

> Please, procure a paper that supports your point of view and simultaneously satisfies your requirements.

I gave you the one I knew about that comes closest. The fact that there are no papers meeting the criteria for a good study in this area is not an indication that my standards are too high, but that yours are too low.

> But what you're doing isn't science at all. You're just shitting on other people's work without showing what you actually like.

Science is about applying skepticism to questions and demanding evidence. Again, we're not talking about emotional spreads in People Magazine here.

> I'm convinced that the "studies" you want simply don't exist, either on my side of the argument nor on yours.

The studies don't exist. That's exactly the point. And it's not "my side" or "your side" -- I have no attachment to the outcome here. Show me a study that meets the standards I set out and provides evidence for your claim, and I'll believe you. You can't.

If the best you've got is anecdote and low-quality data, then you get my prior belief in your claim, which is that you're probably mistaken.

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Wednesday July 14, 2021 @02:50AM (#27830388)
There is a certain kind of person who is stuck in their belief and they will do everything they can to ensure that their belief system remains in one piece. They will raise the bar for evidence that contradicts their belief to the point that no such evidence remains, they will lower the bar for evidence that confirms their belief. They will ascribe to figments of the imagination of others when it comes to their personal experiences (because 'anecdote') and will claim to be doing science while ignoring the fact that science is by definition pretty messy until it has settled.
Re:Burden of post-Covid-19 syndrome and implications for hea... by timr on Thursday July 15, 2021 @03:52PM (#27849301)
There's also "a certain kind of person" who has no scientific or medical training. They have an emotional connection to the subject, and desperately wants to believe something is true, and therefore willing to grasp at any shred of circumstantial evidence to justify that belief.
Re:Burden of post-Covid-19 syndrome and implications for hea... by satysin on Tuesday July 13, 2021 @04:01PM (#27825581)
All valid points.

However as someone who was diagnosed with C-PTSD back in 2009 and spent 4 months in hospital for treatment of panic disorder, depression and anxiety this is different to what I experienced back then. It is a near constant discomfort in my chest.

I am wondering if it is perhaps costochondritis or something similar to it? Perhaps costochondritis and anxiety that is making the whole thing worse? I wish I had answers. Hopefully I will next week.

Re:Burden of post-Covid-19 syndrome and implications for hea... by bb2018 on Tuesday July 13, 2021 @03:10PM (#27824928)
I do wonder if this is proportional to your symptoms/proportional to other ailments.

For instance, is someone with Covid (who was on the verge of needing oxygen) more likely to have long term symptoms than someone the same age who got the flu/pneumonia (and was also on the verge of needing oxygen).

In other words - is there something unique about Covid? Or is that any disease that sets you back has serious long-term consequences, and Covid is just statistically much more likely to do that than the flu, for example.

Re:Burden of post-Covid-19 syndrome and implications for hea... by f38zf5vdt on Tuesday July 13, 2021 @03:16PM (#27825012)
For me varicella-zoster was the causative agent. I had a lot of trouble being taken seriously by friends/some medical staff after I said that I had serious issues after a bad infection with it, because of most people believe it to be a relatively benign disease. I think it's the case that most viruses will cause chronic disease in a small subset of people.

> “If Covid didn’t cause chronic symptoms to occur in some people,” PolyBio Research Foundation microbiologist Amy Proal told Vox, “it would be the only virus that didn’t do that.”

> Even with growing awareness about long Covid, patients with chronic “medically unexplained” symptoms — that don’t correspond to problematic blood tests or imaging — are still too often minimized and dismissed by health professionals. It’s a frustrating blind spot in health care, but one that can’t be as easily ignored with so many new patients entering this category, said Megan Hosey, assistant professor at the Johns Hopkins Department of Physical Medicine and Rehabilitation.

https://www.vox.com/22298751/long-term-side-effects-covid-19...

Re:Burden of post-Covid-19 syndrome and implications for hea... by TaupeRanger on Tuesday July 13, 2021 @03:23PM (#27825101)
It's frustrating but it's not a blind spot - we simply have no way to help these patients. You have brain fog and occasionally your heart feels like it's beating out of your chest for no discernable reason? Sorry, there's nothing we can do...try exercising and getting good sleep, we guess?
Re:Burden of post-Covid-19 syndrome and implications for hea... by fragmede on Tuesday July 13, 2021 @07:03PM (#27827307)
We (humanity) can still treat the symptoms - and the damage they cause. Eg the specific mechanism for covid-induced heart palpitations may not yet be understood, but a heart rate of 160 or even higher for prolonged periods will damage the heart. Beta blockers will manage that - but not all doctors have been willing to prescribe medication to people that clearly need it.
Re:Burden of post-Covid-19 syndrome and implications for hea... by TaupeRanger on Tuesday July 13, 2021 @07:36PM (#27827535)
Rarely have I heard of sustained 160 BPM heart rate as a post-COVID symptom. Likely something else would be going on there. Mostly it's vague symptoms, maybe you have 90-120 BPM, but then it goes away by the time you see the doctor the next day. Beta blockers have their own problems and you don't want to just start prescribing them for these vague, transient symptoms.
Re:Burden of post-Covid-19 syndrome and implications for hea... by fragmede on Tuesday July 13, 2021 @08:09PM (#27827779)
It's frustrating that it took an an at-home heart rate monitor and a smartphone video of my heart rate for my cardiologist to do something about it (they sent me home w/ an ECG for a day or so), but I eventually managed to get a prescription for it. Doctor still can't explain the "something else going on there" but thankfully my heart rate no longer spikes for no apparent reason.
Re:Burden of post-Covid-19 syndrome and implications for hea... by dangom on Tuesday July 13, 2021 @03:52PM (#27825492)
The SARS-CoV-2 virus binds to a specific receptor (ACE2) that is expressed in a multitude of different cells in our bodies, most curiously the endothelial cells that line up your vessels. Some hypothesis suggest that the disruption of the systems associated with ACE2 is what causes downstream effects that lead to symptoms of COVID. By virtue of infecting blood vessels, the virus can cause them to stop functioning properly, and thus impair the supply of oxygen to otherwise healthy tissue. These hypoxic microlesions, which have been found even in the brain of patient populations, could in turn be responsible for some of the sequelae that the infection leaves behind after the end of acute period of the disease.

The extent to which damage is caused, and the extent to which the body can recover will evidently dictate the period of convalescence. Because symptoms vary wildly from case to case, pinpointing general routes of treatment or estimating the duration of recovery is a highly complex problem.

Re:Burden of post-Covid-19 syndrome and implications for hea... by bb2018 on Thursday July 15, 2021 @10:12PM (#27852383)
I obviously realize that influenza does not attack the body in the same way with the same receptors - but it obviously attacks the body in its own unique way.

It rarely causes serious health consequences but for the people it does (I've known younger people sent hospital with it) are there long term consequences on the same order of magnitude? It doesn't seem like the data really exists for this.

Re:Burden of post-Covid-19 syndrome and implications for hea... by Jefro118 on Tuesday July 13, 2021 @03:40PM (#27825326)
I believe one difference with Covid is that people often have issues across multiple organs (I believe this is because the virus binds to ACE2 receptors which are present over the body, not an expert though) whereas with flu/pnemuonia I think it's more likely to be just generic fatigue and lung capacity as longer term effects.

I think the sheer range of long lasting symptoms is quite unique to Covid, although other diseases like Ebola or Smallpox would leave more severe damage.

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:14PM (#27824977)
Good question, and one that I would like to have the answer to too. I also wonder what the effects are on longer term immunity, apparently there is some evidence that if you had a more serious case that your immunity will be longer lasting but I have yet to find something that is conclusive.
Re:Burden of post-Covid-19 syndrome and implications for hea... by dennis_jeeves on Tuesday July 13, 2021 @06:59PM (#27827273)
>In other words - is there something unique about Covid?

No is my guess, based on anecdotes, experience and observation.

Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @03:48PM (#27825436)
In my early 30s: Pretty sure I had COVID-19 in early March 2020. I had shortness of breath for a couple of days and I was feverish for about 8 weeks.

Afterwards, I have severe fatigue. I also experienced bouts, off an on for like a week or two at a time, where I could not physically get warm, and I was freezing to death, no matter what I did.

I also have severe dysautonomia (autonomic nervous system dysfunction) which I had prior to probably having COVID-19, which got worse. However, it is much improved now. People who got dysautonomia from COVID-19, by the way, can expect for it to significantly improve, or go away. Just focus on resting. It is a brutal disease, trust me, but you can get through it.

I also had cognitive issues, with respect to memory, which has improved significantly.

My best tip: Get a Garmin watch, that has the "Body Battery" function. It's a literal lifesaver. Do not let the "Body Battery" ever go under a 20 (out of 100) score, ever. You will pay a huge price if you do. Use the "Body Battery" to gauge if you can exert yourself or you need to rest. (It also determines if you got a good night's rest.) By the way, it works based on heart rate variability, and is quite accurate.

Here is a good Physical Therapy presentation on the current situation: https://www.albertahealthservices.ca/assets/info/hpsp/if-hps...

Other tips: This is the ultimate site on fatigue. Unfortunately it is in Norwegian, so you have to use Google Translate for the website (and the PDF documents--which are great): https://www.kognitiv.no/psykisk-helse/ulike-lidelser/utmatte...

It is based on the book "Energityvene" which is called Energy Thieves. Unfortunately there is not an English version.

I hope this helps.

Re:Burden of post-Covid-19 syndrome and implications for hea... by johnchristopher on Tuesday July 13, 2021 @03:58PM (#27825549)
Which Garmin watch model do you have ?
Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @04:09PM (#27825663)
I have a Garmin Fenix 6 Pro, which I had before I got sick with COVID-19. However, it is spendy (expensive).

I did a search and Body Battery is available on cheaper models like the Garmin Vivosmart 4 ($129 USD). I put into DuckDuckGo and verified:

"Garmin" AND "vivosmart" AND "body battery"

Link to Garmin Vivosmart 4: https://buy.garmin.com/en-US/US/p/605739

Proof: https://www8.garmin.com/manuals/webhelp/vivosmart4/EN-US/GUI...

Re:Burden of post-Covid-19 syndrome and implications for hea... by johnchristopher on Wednesday July 14, 2021 @02:17AM (#27830223)
Thanks for your searching, much appreciated :).

I won't get a non-replaceable band one though, I have a tendency to sweat them to death :/.

Re:Burden of post-Covid-19 syndrome and implications for hea... by CodeGlitch on Tuesday July 13, 2021 @04:27PM (#27825876)
Here's a list of supported watches:

https://support.garmin.com/en-US/?faq=VOFJAsiXut9K19k1qEn5W5

By coincidence I was looking to buy a Garmin smart watch!

Re:Burden of post-Covid-19 syndrome and implications for hea... by aortega on Tuesday July 13, 2021 @04:10PM (#27825675)
The Garmin instinct have that function and works great. There are way cheaper options like the Fitbit charge, it also has a body-battery and is very accurate.

BTW I never had covid but if my body battery gets below 20, I also feel like shit. That´s the point I guess.

Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Tuesday July 13, 2021 @04:12PM (#27825710)
Thank you for the recommendation, which is thoughtful. One thing that you may want to keep in mind: Garmin has to follow GDPR, while FitBit (Google) does not.

You may not want Google (e.g. YouTube) serving you ads when it knows you are in a very low body battery state, for example.

Re:Burden of post-Covid-19 syndrome and implications for hea... by johnchristopher on Wednesday July 14, 2021 @02:50AM (#27830391)
Why doesn't Google have to follow GDPR in this case ?
Re:Burden of post-Covid-19 syndrome and implications for hea... by disabled on Wednesday July 14, 2021 @02:55PM (#27836894)
Sorry for the confusion: For Americans Google does not have to follow GDPR. Garmin has to follow GDPR worldwide as it is incorporated in Switzerland.
Re:Burden of post-Covid-19 syndrome and implications for hea... by kvnn on Tuesday July 13, 2021 @03:09PM (#27824914)
Have you seen this strategy for Long Covid? https://covid19criticalcare.com/covid-19-protocols/i-recover...
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:16PM (#27824999)
No, I haven't and reading that I immediately picked out one more symptom: reduced appetite. I have lost significant weight, and in fact I'm still losing weight (but much more slowly now). Down to about 68 Kg, 1,76 meters tall.
Re:Burden of post-Covid-19 syndrome and implications for hea... by shaicoleman on Tuesday July 13, 2021 @03:18PM (#27825040)
You would probably also want to watch the video about it that goes into more detail:

https://youtu.be/ZCYM2HW2Ayw?t=321

Re:Burden of post-Covid-19 syndrome and implications for hea... by manmal on Tuesday July 13, 2021 @03:03PM (#27824855)
Did you try NAC? Maybe worth a shot - this paper is about „long EBV/mono“ which might have similar mechanisms: https://pubmed.ncbi.nlm.nih.gov/29228057/

> These data support the idea that NAC could be considered as a treatment to alleviate chronic inflammatory pathologies, including post-viral disease

Re:Burden of post-Covid-19 syndrome and implications for hea... by iammisc on Tuesday July 13, 2021 @03:12PM (#27824945)
NAC is illegal in the USA now. Thank you FDA.
Re:Burden of post-Covid-19 syndrome and implications for hea... by nick__m on Tuesday July 13, 2021 @03:42PM (#27825350)
They seems to have banned products claiming to cure hangovers https://www.fda.gov/food/cfsan-constituent-updates/fda-sends... but Nac is still available. Amazon had an overly broad interpretation of those letters but it appears to be available there : https://www.iherb.com/pr/Now-Foods-NAC-600-mg-250-Veggie-Cap...
Re:Burden of post-Covid-19 syndrome and implications for hea... by jamroom on Tuesday July 13, 2021 @03:34PM (#27825238)
Are you talking about N-Acetyl Cysteine? Something like this?

https://www.swansonvitamins.com/swanson-premium-nac-n-acetyl...

When did it become illegal? I've used it before and was unaware of that.

Re:Burden of post-Covid-19 syndrome and implications for hea... by iammisc on Tuesday July 13, 2021 @03:46PM (#27825403)
I've used it before as well.

Here is a story about the FDA and NAC: https://www.naturalproductsinsider.com/regulatory/crn-petiti...

Honestly, I haven't used NAC in ~2 years. Have just heard about the drama from friends.

Re:Burden of post-Covid-19 syndrome and implications for hea... by tguvot on Tuesday July 13, 2021 @03:30PM (#27825179)
not really illegal. seems to be sold on iherb
Re:Burden of post-Covid-19 syndrome and implications for hea... by perlgeek on Tuesday July 13, 2021 @03:22PM (#27825084)
> I will always wonder if I had called them earlier if I could have avoided the worst of this

Given the prevalence of Long Covid in asymptomatic cases, many people claim that the severity of the initial disease and the long-term symptoms are not really correlated. So it's likely that seeking emergency care wouldn't have changed anything.

Wishing you the best of luck and a good/complete recovery!

Re:Burden of post-Covid-19 syndrome and implications for hea... by austincheney on Tuesday July 13, 2021 @03:33PM (#27825222)
Symptomatic or not if you carry the virus you should still pop hot on an antibody test. You would think.

I had a Covid positive coworker last year cough around me and directly work very closely with me immediately before taking sick time. I still continued to fail the antibody tests indicating either no viral contact or no immune response of any kind.

I don’t know if there is a correlation here but in a six month period last year I caught the common cold three times. The second of those times was a month before my coworker tested positive and the third time was a week after they tested positive.

Re:Burden of post-Covid-19 syndrome and implications for hea... by bserge on Tuesday July 13, 2021 @04:09PM (#27825667)
You will test positive for antibodies for months after infection.

Kind of the whole point of the immune system and the vaccine.

Contrary to some beliefs, Covid doesn't spread by people looking, touching or talking to each other. The latter has a higher chance, though.

It's highly likely you've never gotten it from your coworker.

Assuming you mean antibody blood tests, I don't know anyone who would willingly take several of them in a short time.

Re:Burden of post-Covid-19 syndrome and implications for hea... by verdverm on Tuesday July 13, 2021 @03:43PM (#27825360)
Some researchers are starting to think that the spike protein is the main contributor to this issue and not the virus itself, so if even if the virus is gone, the protein may still be present.
Re:Burden of post-Covid-19 syndrome and implications for hea... by IAmGraydon on Tuesday July 13, 2021 @02:50PM (#27824669)
You were tested and diagnosed with Covid in January 2020?
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @02:53PM (#27824719)
No, I had it in early March, pretty much textbook, called the local doctor who said don't bother testing (it was quite obvious) but isolate from family, which we did as good as we could. There were a couple of really bad nights, and after that it got better bit by bit and after three weeks I was able to get up again and work a bit. From there it was a long slog to get back to 'normal'.
Re:Burden of post-Covid-19 syndrome and implications for hea... by usaphp on Tuesday July 13, 2021 @03:17PM (#27825028)
So you were never tested for covid? How do you know if it was covid ?
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:23PM (#27825092)
Because I'm not a complete idiot.

- pandemic in progress: check

- risky lifestyle: check (as in very frequent air travel for work)

- symptoms: O2 level drop, fluid in lungs, persistent cough, extreme tiredness, dizzyness, loss of smell/taste check all of these, and the rest, fortunately not. Later on: crazy beating heart for no particular reason, losing weight steadily but more slowly now.

Decision not to test was made by qualified medic, who said that they needed the tests for those cases where there was some degree of doubt, which in my case there really wasn't, besides that there was an extreme shortage of tests at that time. And to call an ambulance straight away, and not my house doctor in case things got worse than they were at that moment.

Keep in mind that there are vast numbers of people that have gotten COVID that did not get tested and that therefore do not show up in the various statistics. Especially in the beginning the health care system was totally overwhelmed and care went to those who needed it most, and either wasn't administered to those who might have benefited from it and many who simply didn't make it.

Re:Burden of post-Covid-19 syndrome and implications for hea... by the-dude on Tuesday July 13, 2021 @04:52PM (#27826187)
In previous Corona discussions on HN I saw multiple comments from people who were convinced they had COVID, tested after the fact, but the tests ( some tested multiple times ) came back negative.
Re:Burden of post-Covid-19 syndrome and implications for hea... by felixbraun on Tuesday July 13, 2021 @03:40PM (#27825318)
You could check for T-cells at some point -- if you had Covid, they are measurable even after many months. In contrast, IgG titers show up in only ~80% and decline steadily. Excellent recent paper:

> Here, we investigated SARS-CoV-2 antibody and T cell responses in matched samples of COVID-19 convalescent individuals up to 6 months after infection. Longitudinal analysis revealed decreasing and stable spike- and nucleocapsid-specific antibody responses, respectively. In contrast, functional T cell responses remained robust, and even increased, in both frequency and intensity.

https://stm.sciencemag.org/content/13/590/eabf7517

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:45PM (#27825380)
Thank you, if there is any benefit to having that level of certainty (and not to satisfy internet naysayers) then I may still do this, but I have received my shot (Jansen) because there are still some immunological benefits from that and it helps in a regulatory sense as well (lots of doors are closed to people that have not been vaccinated).

What matters to me is that I got through it, still live pretty carefully even now because I don't want a re-run if I can avoid it and I would advise anybody that hasn't had it yet and/or has not been vaccinated to go and get that done as soon as you can. This is no walk in the park, I used to be pretty fit for my age, and the last year has been a complete wipe-out. Avoid if you can.

Re:Burden of post-Covid-19 syndrome and implications for hea... by lamontcg on Tuesday July 13, 2021 @05:53PM (#27826744)
You might consider it if insurance puts up a fight but there's no utility in getting a T-cell test just to try to win arguments on the Internet.
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Wednesday July 14, 2021 @01:17PM (#27835559)
Insurance? For what? I did not end up in hospital and where I live medical problems do not end up (normally) as financial problems as well.
Re:Burden of post-Covid-19 syndrome and implications for hea... by lamontcg on Wednesday July 14, 2021 @02:58PM (#27836925)
Yeah, I assumed you might wind up getting treatment for long COVID and that you lived in the US.
Re:Burden of post-Covid-19 syndrome and implications for hea... by clairity on Tuesday July 13, 2021 @03:32PM (#27825212)
> “Because I'm not a complete idiot.”

yah, it’s the partial idiots who are hard to discern. complete idiots are the easiest to dismiss out of hand.

many infections have long lasting effects. you’d need to systematically rule them out/in via testing to be as certain as you claim to be.

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:38PM (#27825279)
Right, well let's just say that coincidentally I had a viral infection that has the exact same symptoms as COVID, has the same long term effects as are reported in many cases of COVID and which coincidentally happened to be timed to match the first wave of that particular pandemic, but according to you it wasn't COVID when it wasn't confirmed as such with a test.

Consider the alternative: you would have to come up with some kind of viral agent that did the same thing but wasn't COVID.

Which to me seems to be a far more outrageous claim than the one that I was simply one of many. The test does not make the disease, it is merely positive confirmation, but I've yet to hear of some surprise viral disease that ran in parallel to this, isn't COVID but matches the symptoms so well.

Re:Burden of post-Covid-19 syndrome and implications for hea... by Dylan16807 on Tuesday July 13, 2021 @05:28PM (#27826532)
> let's just say that coincidentally I had a viral infection that has the exact same symptoms as COVID, has the same long term effects as are reported in many cases of COVID and which coincidentally happened to be timed to match the first wave of that particular pandemic

That happened to a lot of people. The first wave in March wasn't very big compared to later months.

You mentioned the flu season didn't happen in a different post, but that was much later, as was most masking.

> Which to me seems to be a far more outrageous claim than the one that I was simply one of many.

That's a terrible way to analyze this. You were "one of many" either way.

> but I've yet to hear of some surprise viral disease that ran in parallel to this, isn't COVID but matches the symptoms so well.

The symptoms aren't all that unique for a severe illness that messes up your lungs. There's no 'surprise' involved in other possible causes.

Re:Burden of post-Covid-19 syndrome and implications for hea... by fragmede on Tuesday July 13, 2021 @07:43PM (#27827579)
Extreme fatigue for months after is not neatly explainable. Myalgic Encehalomyelitis/CFS is similar, but when other symptoms are included (weird skin rash, heart palpations, smell issues, GI trouble), the simpler explanation is Covid. A deeper reading on long Covid symptoms may prove informational as the cluster of symptoms is fairly unique and unexplainable.
Re:Burden of post-Covid-19 syndrome and implications for hea... by clairity on Tuesday July 13, 2021 @03:59PM (#27825554)
that’s being overly invested in the idea that it’s covid rather than realizing that infections of all kinds have long-lasting effects. individually and societally, that leads to a distortion of attention and resources to the wrong things. i.e., partial idiocy, the worst kind, and unfortunately rampant.

there is a real opportunity now for medical science to look comparatively at infectious diseases and attack them systematically and cohesively rather than myopically. hopefully we don’t squander that.

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Wednesday July 14, 2021 @01:20PM (#27835598)
Hopefully we don't squander basic respect for our fellow human beings either. Not everything is a science experiment or a thesis. Given that the number of people that died from COVID based on excess mortality where I live is approximately 50% higher than the official figures the chances of a bunch of people having unconfirmed COVID are rather high.

So unless you are going to go out on a limb to suggest a better alternative I suggest you leave well alone.

Re:Burden of post-Covid-19 syndrome and implications for hea... by saalweachter on Tuesday July 13, 2021 @03:44PM (#27825366)
I mean, I'm not even sure I would bother with a T-cell test in your case. The only meaningful difference in your future life would be to have the results to give people on the internet, which doesn't seem worth getting two tubes of blood drawn.
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:48PM (#27825434)
Precisely. If there is a benefit to me I'll get tested. Even the medic I talked to was pretty clear: don't bother, save the test for someone who really needs it. Which at that time could have saved a life for someone that needed to have an operation and required a COVID test prior to admission.
Re:Burden of post-Covid-19 syndrome and implications for hea... by Amezarak on Tuesday July 13, 2021 @03:42PM (#27825347)
I don't think GP was suggesting you were dumb, just trying to point out there's a lot of widespread respiratory illnesses with exactly the same symptoms that are endemic - not to say Covid isn't more severe at a population level, but that you can't really say with any kind of certainty based only on those symptoms that someone has Covid. A few years ago I had exactly these symptoms, plus a high fever, but in my case, it was probably the flu. it was awful - I didn't really get over it for several months.
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:53PM (#27825496)
Yes, but the flu season in 2020 pretty much didn't happen and COVID did. So in your case the even money would be on it not being COVID 'a few years ago' but if it had happened in March up to today of 2020/2021 then probably it would be.

GP is playing silly games and I'm a bit tired of those given my rather personal engagement with this particular virus, and frankly, if it is some other kind of virus then it hardly matters now, does it?

Re:Burden of post-Covid-19 syndrome and implications for hea... by SketchySeaBeast on Tuesday July 13, 2021 @05:45PM (#27826674)
> Yes, but the flu season in 2020 pretty much didn't happen

Not arguing the rest of your claims, but that's objectively not true. Based upon current estimates it was actually worse than average[1] and its season was cut short in April due to the COVID efforts[2].

[1] https://www.cdc.gov/flu/about/burden/index.html [2] https://en.wikipedia.org/wiki/2019%E2%80%932020_United_State...

Re:Burden of post-Covid-19 syndrome and implications for hea... by eganist on Tuesday July 13, 2021 @02:52PM (#27824709)
> You were tested and diagnosed with Covid in January 2020?

17 months ago would be mid february 2020.

Re:Burden of post-Covid-19 syndrome and implications for hea... by IAmGraydon on Tuesday July 13, 2021 @03:10PM (#27824933)
Sorry you're correct - Feb 13, 2020.
Re:Burden of post-Covid-19 syndrome and implications for hea... by Frondo on Tuesday July 13, 2021 @02:59PM (#27824800)
Hey man, similar thing here. Every six months or so, almost to the day, I've got a spell for about 7-10 days where I have an immense fatigue, like sleeping 12-15 hours at a stretch, and a brain fog that makes it impossible to concentrate on anything. Then it all lifts, and I go back to my usual 7 hours a night, thinking all day and night. This all started for me in February of 2020, too, just before the lockdowns; I didn't get a positive test at the time because my live-in partner did receive one -- the testing clinic said with the positive exposure to just stay home and go to the hospital if I can't breathe -- since then we've both had the same symptoms at roughly the same occurrence.

It sucks.

Re:Burden of post-Covid-19 syndrome and implications for hea... by justwanttolearn on Tuesday July 13, 2021 @02:52PM (#27824708)
I am so sorry to hear, I hope you feel back to normal soon! What are you doing to manage your symptoms right now? Are you exercising, taking vitamins, prescribed drugs, seeing a therapist, etc?
Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @02:57PM (#27824780)
Exercising mostly, cycle as much as I can. Vitamins, drugs or therapists I haven't needed so far other than what is in my normal (pretty healthy) food.
Re:Burden of post-Covid-19 syndrome and implications for hea... by cycomanic on Tuesday July 13, 2021 @05:08PM (#27826338)
Funny I just saw a TV program discussing long covid. One of the guests was Jördis Frommhold who was elected woman of the year in Germany for her work on long covid rehab. Very interesting discussion.

One of the things she mentioned is that many of the long covid patients had mild to moderate covid infections. Also at the moment they don't know why some people get it and others don't. So likely your not calling the ambulance did not make a difference.

Hope you'll get better, the symptoms described sound awful.

Re:Burden of post-Covid-19 syndrome and implications for hea... by christkv on Tuesday July 13, 2021 @04:00PM (#27825569)
Seems vaccinating might help relieve long Covid https://www.yalemedicine.org/news/vaccines-long-covid might be worth talking to your doctor
Re:Burden of post-Covid-19 syndrome and implications for hea... by axiosgunnar on Tuesday July 13, 2021 @03:05PM (#27824876)
You mean your brain was starved of oxygen for some time? (while still enough to not faint)

Interesting, could somebody more knowledgable say if this is possible?

Wish you a swift recovery in any case!

Re:Burden of post-Covid-19 syndrome and implications for hea... by jacquesm on Tuesday July 13, 2021 @03:32PM (#27825217)
I made one critical mistake: it hurt a lot to try to sleep so I tried to sleep on my back one night, and that cost me dearly: the active area of the lungs is not symmetrically divided between front and back, the back part has a larger active surface. Fluid then migrates from the front to the back pooling there leading to less gas exchange. I suspect that this was the lowest point and after that sleeping on my belly at least kept me safe. The really stupid thing: I knew this already (had double pneumonia when I was in my 20's).
Re:Burden of post-Covid-19 syndrome and implications for hea... by kbelder on Tuesday July 13, 2021 @05:35PM (#27826598)
Yeah, when I had Covid my wife was doing everything she could for me... hydrating, vitamins C and D, so on, but I think the treatment with the biggest effect was resting face-down. The fact that that is now pretty common knowledge has probably saved many thousands of lives.
Re:Burden of post-Covid-19 syndrome and implications for hea... by nathias on Tuesday July 13, 2021 @06:19PM (#27826967)
same, and I didn't even have it
Re:Burden of post-Covid-19 syndrome and implications for hea... by taxicabjesus on Tuesday July 13, 2021 @04:52PM (#27826176)
> I will always wonder if I had called them earlier if I could have avoided the worst of this (by having some oxygen earlier on and maybe avoiding some of the damage).

I think you're quite fortunate you held out and got better on your own.

There's some old scientific knowledge that oxygen [O2] in excess is toxic. I've submitted links about toxic-O2 here before, but these did not get much attention [4][5].

Some modern Fire/EMS first responders are well-aware of toxic O2 [0]. My uncle (an MD) knows about toxic O2, but he's not aware of the antidote. I was waiting for someone with credentials to call out the doctors for their mistaken use of oxygen.

I did find an MD's tweet that confirms the old research [1]. The doctor's tread is about how ventilators are harmful too, and how he can kill mice in 3 days with pure oxygen. But the MD didn't mention the antidote (5% CO2) that makes O2 non-toxic.

I've put some effort into tweeting about #MedicalHyperventilation [2] and SARS-CoV-2 [3], but no one consults with a non-credentialed former taxi driver (or his real-world persona).

My write-up: The Folly of Medical Hyperventilation: https://www.taxiwars.org/2021/06/folly-medical-hyperventilat...

I've posted this with my pseudonym because it's sort of inconvenient for people to realize we've driven the global economy into a wall because our doctors are trained to apply pseudo-medicine: "if patient's blood oxygen saturation level is low, supplement pure oxygen", and more inconvenient that there's an antidote that makes oxygen nontoxic to the lungs and the rest of the body.

[0] https://twitter.com/slpearson2/status/997208010328965120

[1] https://twitter.com/robertpdickson/status/126525483948485427...

[2] https://twitter.com/TaxiCabJesus/status/1407155149257154563 [1200] / https://twitter.com/TaxiCabJesus/status/1407185919795294212 [110]

[3] https://twitter.com/TaxiCabJesus/status/1413730850626162691 [204/5]

[4] Mortality/morbidity: acutely ill adults liberal vs. conservative Oxygen Tx(2018) (thelancet.com) - https://news.ycombinator.com/item?id=22993262

[5] Space-cabin Atmospheres: Oxygen toxicity (1964) (google.com) - https://news.ycombinator.com/item?id=25883728

Re:Burden of post-Covid-19 syndrome and implications for hea... by ElViajero on Tuesday July 13, 2021 @03:03PM (#27824860)
I got CoVid in Osaka at the beginning of November 2019. The symptoms lasted around 5 months. I got it again in May 2021 and this time I was fully recovered in 3 weeks.

I got vaccinated, even during the second infection I felt extremely tired and slightly confused, I want to minimize as much as possible the risk of repeating again.

update: For all the down-votes. Time will say. But "A new study shows that first cases of coronavirus infections could have appeared in China between October and mid-November 2019". It fits with my experience. https://www.dw.com/en/covid-study-cases-spread-in-china-earl...

update 2: I arrived to Osaka Airport (KIX) on 9th November, I had symptoms 3 days later.

update 3: Stop down-voting the people that says that it is impossible. It may be the case, I am just sharing my personal experience in case it clicks somewhere. I can be wrong and it could have been a virus with very similar symptoms. I didn't wanted to start a war of up votes and down votes, that adds nothing to the discussion.

Re:Burden of post-Covid-19 syndrome and implications for hea... by gpm on Tuesday July 13, 2021 @03:07PM (#27824892)
> in Osaka at the beginning of November 2019

On what basis do you believe this was covid-19 and not some other disease?

Re:Burden of post-Covid-19 syndrome and implications for hea... by ElViajero on Tuesday July 13, 2021 @03:12PM (#27824948)
I had the same symptoms that I had the second time. The second time was confirmed by PCR-test.

But, of course, it could have been an equivalent disease with the same symptoms: fever, mental-fog, sore-throat.

It is just the timing, the fact that Osaka is visited by many Chinese nationals and the feeling was so similar that makes me quite sure that it was covid-19.

Re:Burden of post-Covid-19 syndrome and implications for hea... by dtech on Tuesday July 13, 2021 @03:42PM (#27825344)
Those are symptoms of literally every airway infection known to man. Is is much, much, much more likely you had a flu/heavy cold instead of having Covid 1 month before the first public Chinese cases and 3 months before first European cases
Re:Burden of post-Covid-19 syndrome and implications for hea... by gpm on Tuesday July 13, 2021 @03:49PM (#27825450)
Also that if the first disease wasn't covid, getting covid the second time around isn't that unlikely, but if the first disease was covid, getting covid again was shockingly unlikely (not impossible) because of the degree of immunity granted by the first infection.
Re:Burden of post-Covid-19 syndrome and implications for hea... by ping_pong on Tuesday July 13, 2021 @03:14PM (#27824974)
I'm sorry but Covid wasn't in Osaka in November 2019. You definitely had some other disease like the flu.
Re:Burden of post-Covid-19 syndrome and implications for hea... by c6401 on Tuesday July 13, 2021 @06:51PM (#27827209)
Given it was in the US at least in December 2019 if not earlier according to the NIH retrospective serology study it doesn't seem to be completely impossible. https://www.nih.gov/news-events/news-releases/nih-study-offe... Also similar Italian serology study by National Cancer Institute showed that sars-cov-2 was circulating in Italy as early as September 2019. https://www.reuters.com/article/us-health-coronavirus-italy-...
Re:Burden of post-Covid-19 syndrome and implications for hea... by ping_pong on Tuesday July 13, 2021 @07:51PM (#27827639)
No. It's impossible. There was no outbreak in Osaka. A disease as virulent as Covid with only a single person infected is not likely at all.
Re:Burden of post-Covid-19 syndrome and implications for hea... by jjeaff on Tuesday July 13, 2021 @03:14PM (#27824980)
Do you happen to work in a biolab? How do you know you had covid in November 2019? The first known cases in Japan aren't until January 2020. And the first reported case in China is November 2019.
Re:Burden of post-Covid-19 syndrome and implications for hea... by DeRock on Tuesday July 13, 2021 @03:10PM (#27824927)
> I got CoVid in Osaka at the beginning of November 2019.

Impossible, cases did not appear in Wuhan until mid-late November. You must have had some other flu/virus.

Re:Burden of post-Covid-19 syndrome and implications for hea... by ElViajero on Tuesday July 13, 2021 @03:16PM (#27825004)
Maybe you are right and it was something else. But, it was very similar and the timing is quite close.

I just feel to share it if it may help someone to build a timeline. And, as I have said in another comment, Osaka has many many Chinese visitors and I was in a very busy airport. I doubt that it took a lot of time to jump from China to other Asian countries.

Re:Burden of post-Covid-19 syndrome and implications for hea... by andy_ppp on Tuesday July 13, 2021 @03:25PM (#27825118)
Yes there’s a small chance of it being COVID then, was there an Osaka-Wuhan direct flight!
Re:Burden of post-Covid-19 syndrome and implications for hea... by andy_ppp on Tuesday July 13, 2021 @03:23PM (#27825098)
I don’t think it’s impossible, unlikely given current information. Of course that information can change…
Re:Burden of post-Covid-19 syndrome and implications for hea... by outworlder on Tuesday July 13, 2021 @03:40PM (#27825324)
Impossible is a very strong word, there are samples of people from months before covid was identified in Wuhan that are under investigation. Not specifically in Japan, but it can't be ruled out with the current information.