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The burden of Long Covid “so large as to be unfathomable”

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Re: The burden of Long Covid “so large as to be unfathomable”

#121

Post by japostoles »

Exuma wrote: post #104
treprinum wrote: post #92

Earlier quoted context omitted.

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…

Wow, thats quite the list. Saving this in case I know anyone with similar problems. My dad lost his smell sadly

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.

Re: The burden of Long Covid “so large as to be unfathomable”

#122

Post by BobbyTables2 »

dmccarty wrote: post #46
mikeyouse wrote: post #3

There's a popular opinion I've seen on HN that "long Covid" isn't a real phenomenon but it's pretty easy to reject that out of hand. There have been several studies, including a recent quadruple blinded one (where participants, care providers, investigators and outcomes assessors are all blinded to treatment/control groups) that show some interventions have statistically significant benefits to treating it; https://w…

Mostly agree with the other posters here. To add my own anecdotal piece, I had a majority of the 12 symptoms[1][2] defined as long covid. Got covid immediately in Northern Thailand, Dec 2019. Over the next 24 months I went from a healthy (perhaps hyper fit) 40-something male to someone who could barely drag himself to the gym, struggled to complete workouts, went through bouts of mental fog, heart arrythmias, chronic…

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Re: The burden of Long Covid “so large as to be unfathomable”

#123

Post by treprinum »

kdmccormick wrote: post #107
treprinum wrote: post #57

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 b…

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.

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).

Re: The burden of Long Covid “so large as to be unfathomable”

#124

Post by gerbilly »

treprinum wrote: post #102
whimsicalism wrote: post #70

Earlier quoted context omitted.

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.

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 m…

> 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.

Re: The burden of Long Covid “so large as to be unfathomable”

#125

Post by AnonCoward42 »

w______roy wrote: post #90
treprinum wrote: post #57

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 b…

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. Sti…

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!

Re: The burden of Long Covid “so large as to be unfathomable”

#126

Post by Nanana909 »

rjsw wrote: post #118
Nanana909 wrote: post #80

Earlier quoted context omitted.

> For COVID to cause severe illness in a few % -- enough to kill in rare cases -- but to not cause permanent lung or heart or kidney damage etc. in some significant percent who got very sick is implausible, even incoherent with all other theories about how viral diseases cause disease. So then why do we never talk about long flu? Long meningitis? I don’t think people are in disbelief COVID can cause long term damage…

Maybe we should talk about long flu, you can have post-viral fatigue after it, the only difference with COVID is the duration.

Wasn’t COVID a virus? So it seems like we already have a word to describe this? post-viral fatigue

Re: The burden of Long Covid “so large as to be unfathomable”

#127

Post by whimsicalism »

300bps wrote: post #19

What are the clinically significant differences between long covid and things like fibromyalgia and chronic fatigue syndrome that have been around for quite a while? I don't appear to be the only one asking these questions. https://www.jwatch.org/na56219/2023/06/15/long-covid-and-chr... https://www.publichealth.columbia.edu/news/long-covid-really... https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10117846/

They're very similar and if you work in these fields you wink wink know what it means that the disease profiles are so similar.

Re: The burden of Long Covid “so large as to be unfathomable”

#128

Post by llm_nerd »

retrac wrote: post #48
monero-xmr wrote: post #28

There is a lack of hard scientific evidence definitively proving this. However you may know in your bones that this is real, from lived experience or from people you know. Please keep that in mind when you dismiss other things that lack definitive scientific evidence. We as humans seem to pick and choose which currently unverified things to believe and which to dismiss.

I cannot comprehend a position of total long COVID denial, though I have encountered it online. Every virus you can think of that causes acute illness, can cause long term or even permanent damage. Sometimes rarely, sometimes often. Even the mildest common cold viruses, can, in very rare cases, be severe enough to cause pneumonia which causes scarring which leads to permanent loss of lung function. Hepatitis A is usu…

You are absolutely correct. Any infection has the potential to cause serious, long-term problems. Often it is our own immune system going haywire.

I don't think anyone has any problem with that notion. Severe illness is severe.

I think pushback on long covid is when it is similar to antivaxxers claims of vax injuries -- where everything that anyone suffers after the event is lazily traced back to a single source, whether it's "got vaccinated" or "had covid". If someone who had a mild case of covid now attributes every mental state, malaise, physical discomfort, headaches, trouble concentrating, etc, to "long covid", it should properly earn skepticism.

Re: The burden of Long Covid “so large as to be unfathomable”

#129

Post by whimsicalism »

galangalalgol wrote: post #40
bryanlarsen wrote: post #17

Earlier quoted context omitted.

Agreed. I have a friend who has Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome, which has destroyed her life, turning the most energetic person I knew into someone who cannot walk more than a block a day. Her ME was likely triggered by the H1N1 flu in 2009. It's too early to tell whether this is the same as long COVID, but it is certainly suggestive.

My first thought upon hearing about it was that long covid seemed like a rather general autoimmune disorder. But the researchers all seemed very hesitant to label it as such. Perhaps just because they haven't isolated which antibodies are being elevated, but also perhaps there is a compounding effect from organ damage? The impact of viral loads will some day be viewed as what shaped history and held us back from fast…

Researchers who suggest that there is a substantial psychosomatic component to CFS get death threats and have been forced to discontinue their research, so the field is sort of at an impasse because only physical (usually viral) explanations get any play which is fine because CFS is definitely partially caused by post-viral sequelae but you get crucified for suggesting there is a significant psychosomatic component.

Re: The burden of Long Covid “so large as to be unfathomable”

#130

Post by zmgsabst »

unethical_ban wrote: post #37
Proven wrote: post #12

> The best way to not get long Covid is to not get Covid, and the best way to not get Covid is to be well vaccinated and boosted and have a good level of antibodies to stop the virus getting in. I know people who got multiple jabs and have had Covid-19 several times already. These suggestions are useless. > in those breakthrough cases in the vaccinated people, your chance of long Covid is further reduced perhaps by a…

What risk do you perceive from being vaccinated that makes it at least as risky as covid and long covid? You feel like shit for a day, true.

Table 3 and 4 of this UK government information state the number of vaccinations needed in my age/health bracket to prevent a severe hospitalization exceed the number at which we’d expect at least one serious adverse effect — that is, they do more harm than good.

https://assets.publishing.service.gov.uk/government/uploads/...

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