> The cause of PASC is currently debated but likely involves several different components, including: viral dissemination and persistence, immune activation and dysregulation (e.g. clotting, autoantibodies and reactivation of pre-existing latent viruses), cell death and tissue damage, and long-lasting cellular changes (e.g. epigenetic changes, senescence, fibroproliferation, metabolism alterations) (3). However, at present we lack an integrative understanding of how these disease components interact to cause the variable symptomology of PASC. Based on studies on acute COVID-19, PASC and the related myalgic encephalomyelitis (ME; chronic fatigue syndrome), we hypothesize that an inflammatory acid-base disruption underpins PASC and that viral proteins, both acutely and persistently-expressed, cause disease symptomology through disseminated tissue damage and inflammatory acid-base disruptions.
Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments?
Focusing on sleep, diet/hydration, and exercise are your three major ways to combat long covid. The latter (exercise) is heavily controversial in the long covid / ME/CFS communities, but would help moderate your acid-base over the long term if you can push through the pain/fatigue/etc.
The author suggests a few things helped them. Deep breathing, diet changes surrounding acidic foods, and stretching.
My personal experience with two bouts of long covid (14 months and 7 months) has me still believing that microclots and nitric oxide deficiency being the key factors in my recovery. I've recovered twice now and back to pre-covid ability. It took me two years of constant exercise to build back to where I was. A modern Sisyphean task at that.
> but would help moderate your acid-base over the long term if you can push through the pain/fatigue/etc.
Pushing through is part of the problem. The crash that comes from pushing is the real problem --all kinds of blood markers go amuck after exertion (especially anything aerobic >10m, like a cardio pulmonary exercise test) and stay amuck for about a week. And the more you try to do during the crash the longer or worse the crash becomes. Pushing regardless of crash status, like in graded exercise therapy, has actually caused ME/CFS/Long Covid baseline symptoms to become worse semi-permanently.
> Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments?
I had weird cardiovascular issues (stuff that feels like microclotting after various type of efforts) and \i'm really curious about how to improve microvasculature (I altered my diet a lot but that's a bit of a blind shot). I thought it was out of reach of people today.
What has helped me is nattokinase, occasional aspirin, and plenty of nitric oxide foods / supplements. Very low risk and are generally found in natural foods. But I take these because I suspect I’ve had long Covid post my two infections.
There is also a triple anticoagulant therapy of clopidogrel, aspiring, and apixaban. Those studies are popular in South Africa.
Thanks, I'm gonna read about this. I didn't try microdosing aspirin, even though it's well known, because i'm too weak on biochemistry to avoid bleeding.
Really, thanks a lot, it's a damn burden when your cardiovascular system is feeble, you're constantly on the edge of a problem and have to monitor every effort (almost requiring a car for groceries because i'm not sure I can walk with a backpack multiple times a week).
ps: I've recently learned about the blood viscosity aspect and also red blood cell renewal through "blood donation", you red blood cells being more elastic, it's supposed to ensure better flow in microvasculature.
The author has a link in the mastodon post. I was simply quoting the article and some of their other threads.
There is a lot of fluff in general, but experience is the best teacher. I'm convinced personally that it helped speed up my recovery, but then again who knows if it is gone for good. That's the vicissitudes of life for ya.
I can confirm that I had ME for 10 years and the treatments which the author discusses helped me too, I had to discover them through experience but it has always been clear that my lactate levels were sky high, I've always felt as I was feeling after an all out rowing competition when I was healthy. The condition is terrible.
> But what is fundamentally causing these environments?
With the caveat that this doesn't contain an answer, cf. cited studies https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8469745/ ("inflammation, difficulty in gas exchange in the lungs and thrombosis" during early infection causes a self-reinforcing cycle of metabolic acidosis: decrease in blood pH leads to decrease in oxygen saturation, which exacerbates the acidosis) and https://pubmed.ncbi.nlm.nih.gov/32738466/ (increased general COVID-19 vulnerability correlating with increased lactate dehydrogenase levels).
The OP study suggests in the broader context that a person more prone to acidosis is more likely to have a much longer and worse experience with COVID. This isn't necessarily news because acidosis was already well correlated with worse short-term COVID outcomes, but if treating the acidosis can substantially treat the symptoms of PASC/long COVID - which one of the authors attempts to experimentally prove on the smallest meaningful sample size of herself - then identifying and treating the cause of _pre-infection_ acidosis risk factors might reduce the likelihood and potency of long COVID.
And since two of the strongest causes of metabolic acidosis are poor renal health and poorly managed diabetes, it feels like there's a case for at least experimentally trying to treat long COVID with a combination of renal nutrition (low-acid/high-alkaline diet, more alkaline-forming foods, alkaline water, less alcohol, more sodium citrate or bicarbonate) and pre-diabetic treatment (stop smoking, exercise, increase low-starch vegetable intake, treat high blood pressure).
Or tl;dr: eat all brussels sprouts and carrots, go play outside more, and stop eating and drinking so much crap. Preferably before you get COVID, but especially after.
Unironically my first thought was sildenafil. The little blue pill works by increasing nitric oxide production and was originally designed for vascular heart issues iirc
I’ve heard of that as a wonder drug. It signals for blood flow and dilate blood vessels. There’s other supplements like l-arginine + citrulline that has similar effects but different mechanisms.
>Meanwhile, I decided to put the hypothesis to the test and came up with a treatment consisting of multiple components that would, in theory, enable me to rebalance my acid-base levels. After trying this treatment for a couple of days I started to see significant improvements in my full range of #LongCovid symptoms.
"I have discovered a truly marvelous treatment for Long Covid, which, however, this margin is not large enough to contain."
> After continuing this makeshift treatment for a couple of weeks, I improved to a point where I was completely and stably symptom free.Since then I’ve been working with Dr. Jeremy Rossman to put this mechanism on paper, so that it can be shared and further researched, tested, and proven.
Counting down seconds to articles spinning this as "CURE FOR LONG COVID MAY HAVE BEEN FOUND", someone who thinks they have long COVID "does their own research" and starts drinking gallons of pH buffering solution. I'm excited and happy for the researcher but if we've learned anything about COVID treatments in the past few years, it's that desperate people will do desperate things (eg hydrochloroquine) well after they've been shown to be harmful. I think it'd be nice to not get too many people's hopes up yet.
I can confirm that, after having ME for more than ten years, this researcher seem to have understood the underlying mechanisms. I've got better with a similar treatment and I will persevere now that I know more precisely what to do.
Maybe a too short summary; my tldr would be: self-help research led to the hypothesis that acid-base balance disruption may underpin Long Covid. The hypothesis was published as a paper, the author’s successful self-treatment is described here: https://mastodon.nl/@vickyvdtogt/110202237846457614 high lactate levels were an indicator that helped finding a hypothesis which could explain the diverse symptoms of Long Covid.
I didn't see any description of her self treatment, but I'd assume that to be taking bicarbonate or anything else that say marathoners take like L Carnitine, Carnosine, Beta Alanine, Leucine, Iso Leucine, and Valine.
Yes, I only found it after looking at her Mastodon channel, it ist not a true tldr, but I think still worthwhile to mention. Maybe I should have given this as additional context at the end. Thank you for the feedback and the additional links.
The author tried this treatment on herself. I was unable to find data associated with this self-experiment, such as lactate measurements on multiple days while applying the treatment. Is there another article I missed that covered this?
> It's a hypothesis supposedly testable in a month. Now what?
Your guess is as good as mine.
There's a lot of politics embedded in science now: I learned on the tinnitus thread posted here a few days ago that the side effect of tinnitus after vaccination was very likely to be real, but that research had been suppressed to help with vaccine adoption. It's possible it's a psyops, but here, on HN? By several people with a valid post history? Extremely unlikely.
For this, given how simple the confirmation is (test lactate levels), I hope sufferers of long covid will measure their levels and try the simple suggested approach, for which there should be very little risks of drawbacks (supplementing in a few amino acids and carnitine, taking some sodium bicarbonate)
Hopefully, enough of a critical mass of confirmation for both the proposed confirmation test + simple treatment option will lead to actual research, but what a shame it didn't come from mainstream science, and what a shame independant researchers are being put on the defensive: as the author said in a link just posted: https://mastodon.nl/@vickyvdtogt/110202251308724694
> I want to state again: this is not a suggestion to what people should do, as it needs to be studied and clinically tested first.
Well, maybe it should be, I don't see the risks of people trying stretching exercices, breathing exercices, supplementing in a few amino acids or drinking alkaline water.
I can already imagine comments "BUT WHAT IF PEOPLE DRINK GALLONS OF PH BUFFERS???" Well, it's not what's suggested, and even water can kill if drinking too much of it.
The real shame is how many people have learned to distrust science and how the political takeover has damaged the trust network necessary for society to work.
While anecdotal, her sleep improved significantly within 1 or 2 days of starting this new diet.
I believe she also cites improvements across cognitive symptoms - both her own symptoms and also more broadly, why it would help generally for others. Unfortunately my own LC brain fog is inhibiting my recall of the specifics.
I’m glad to hear she has found relief and hopefully others will, too. I’ll give it a try if I muster sufficient motivation and if this approach is acclaimed by some more positive anectdotes (especially those people who report an abrupt improvement in symptoms). I looked up her treatment regimen and it does sound like quite a hassle. But the risks sound manageable especially in light of the potential benefits.
Unlike your first source, this one does not even attempt to quantify what percentage of the variation in ME is explained by genetics. This only says that genetics plays a role. You need strong evidence to credibly state a monocausal explanation for something like ME.
The reality is that different biomarkers were discovered through the years by the Stanford centre by we are still looking for a specific biomarker to ME.
For example one of the criteria to diagnose ME is to have Pots, which is a disease with very specific symptoms.
Pots is a disfunction of the autonomic system and it is often associated with gastroparesis.
I repeat, you are endorsing a very obsolete theory about ME.
I think you're reading more into this study than the study itself says.
"Conclusions: Our study shows higher levels of neuroticism in patients with post-COVID syndrome" does not imply that "long COVID ... is likely psychiatric."
I'm an engineer, not a social scientist, but to my eye this study doesn't determine the direction of causality. It certainly seems plausible to me that a chronic illness could cause the neuroticism they measured, rather than vice-versa.
Further, the authors themselves seem to imply that there are non-psychiatric symptoms of long COVID: "Secondly, we evaluated the correlation between the main personality traits and the neuropsychiatric features of post-COVID syndrome" suggests that there may be non-neuropsychiatric features.
I think that, as unsatisfying as the prospect is, it's just going to take more time and work for humanity to really understand this virus -- including the nature of long COVID.
As an aside, this article from 2019 [0] suggests that ME is not (or at least not purely) a psychiatric illness.
"The US Institute of Medicine (IOM) in 2015 conducted an extensive review of the literature, including expert testimonies from the most prominent US ME/CFS experts and concluded that ME/CFS is a ‘serious biological illness’. Similarly, the US National Institutes of Health (NIH) concluded that ME/CFS is ‘not a primary psychological disease’ (Green et al., 2015)." [0]
Are you saying that if neuroticism is a cause then neuroticism is the only cause? I’m not an expert but it seems that the causes are pretty much unknown:
Even if that's the case, the source that you have cited does not say that ME is caused only by the patients' psychology. From the abstract of your source:
Personality scores explained 36.3% and 41% of the variance in scores on the anxiety and depression scales, respectively.
This means that 63.7 percent of the variation in anxiety and 59 percent of the variation in depression are not explained by neuroticism or any of the other four of the Big Five personality traits. This is a very far cry from what you are claiming which is that ME is rooted purely in psychology.
She has done research on herself...with cheap electronic home monitoring devices that were not calibrated to any proper laboratory standards, without any kind of proper blinding or any other globally accepted research standards.
I can't. I can't do this any longer.
This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid.
I'm not a scientist, but I beg people to not test wild stuff on themselves and instead let the people do their job who dedicated most of their lives into figuring out problems the proper scientific way. You are not a scientist because you read some research papers and stretched a bit at home and changed your diet and magically feel better now.
Long-Covid for many people is the first time they have to deal with a life-altering illness that we do not have a treatment for yet.
So unless you have prior experience with that kind of situation, I get it, it's scary and hard to understand that there might never be a cure.
I have the "luxury" as someone with a lifelong autoimmune disease that cost me a vital organ along the way and can only live because of science and popping a pill each day, plus surviving cancer, that sometimes all you can do is make the best out of the situation as is while real scientists and doctors figure stuff out.
Accept that at this time you might not be going to get back to what you were capable of before the illness. Build psychological resilience and find mechanisms that help you get back to an acceptable level of life quality. It's not worth it chasing DIY treatments if you have no fucking idea what you are doing, like this girl. Desperation is not a good guide in life decisions.
You are right about one thing - you have the luxury of popping a pill every day that treats your condition. And from that platform, you can look down on the others and tell them to just be patient and resilient.
Your injunction to “build psychological resilience” is exceptionally tone-deaf for those suffering from cognitive problems. If your prefrontal cortex was receiving insufficient perfusion and excessive inflammation, you would begin to see the futility of such a suggestion. Try telling that to someone who’s drowning.
The suggestion that people with LC can, through the measures you suggest, get back to “an acceptable level of life quality” demonstrates how little you understand of their situation. Many people suffering from LC were formerly top-performers in their respective fields and are now suffering considerably every single day- have been for many months or years - and are understandably desperate. Unfortunately, many have chosen to end their lives because after trying the approaches you suggest (and being gaslit in a similar fashion) they concluded that life was not worth living.
Finally, your saying this girl has no fucking idea what she is doing implies you are an expert in the subject matter that she writes in. Is that the case? I find that doubtful. And I sure hope not because the illogical way you reason here would be a huge disservice to the life-sciences field.
>This is as professional as a certain former US president suggesting we should shine strong light into the body or inject people's lungs with disinfectant. It's not a "hypothesis" it's just you being stupid.
Ultraviolet light treatments introduced into the tracheas of five critically ill COVID-19 patients appeared to be safe and associated with a reduction in the respiratory load of SARS-CoV-2—the virus responsible for COVID-19—in all but one patient, according to a study conducted by Cedars-Sinai. [0]
Maybe people should be trying wild stuff on themselves. Granted they shouldn't make sweeping recommendations from it. But moving fast and breaking things solves more problems than waiting for scientific consensus. Planck's Principle and all that.
The study says in no way that the uva therapy was responsible for better outcome of the patients. 20% of their study group died while under the treatment, not necessarily from it.
You make all the classic mistakes misinterpreting study results.
They suspect that some kind of protein activation from the light could have lowered the viral load. They don’t have proof for that or claim they have.
This is in no way an accepted or used treatment for critical ill Covid-19 patients.
But you suggest we should move fast and break things. Breaking things in this case means killing real people.
It has potential. No one should be forced to try things, but if people make an informed choice to become test subjects it’s not something to discourage.
I managed to avoid Covid for three years but finally got it. I suspect it is one of the new more transmissible strains from China after they opened up and 230 million Chinese got sick, because I got it at the Trader Joe's next to the San Jose airport and live in an Asian neighborhood. I've been sick for 6 weeks now, so I don't know if that qualifies as long Covid.
After years of hearing it was "just a flu" I didn't think much of it interacting with my bipolar type II disorder, but I noticed I was hypomanic with Covid in a strange sort of way and my quetiapine no longer seemed to work. Other strange things have happened, such as I am a vegetarian now because eating meat tastes repulsive to me. Dairy is ok. I also can't stand using cannabis anymore. The high feels different, much harsher and weirder.
Not much research has been done in the areas of Covid interaction with psychiatric disorders, psyche meds and interactions with recreational drugs but I'm hoping things get back to normal so I don't have to keep researching it. All except for the meat part, because I'm happy being a vegetarian. And I'll save money at the cannabis store.
Full disclosure: I'm fully vaxxed and boosted with bivalent formulations of the Moderna and Pfizer-BioNTech in November 2022
Edit: I'm not making up wild theories of new mutations. There are multiple credible sources. This is just one
I see. Thanks for the comment. I'm resentful towards friends and family who are anti-vaxxers and downplay the danger, esp since I have elderly parents at risk. I'm mid 60's, they're mid 80's.
> just racist or stupid
I don't see that. China opened up. 230 million Chinese got infected. It mutated. A more transmissible mutation has been reported. I live in Silicon Valley with close ties to China. I live in an Asian neighborhood. I've lived here for three years. I've interacted plenty with my neighbors and shopped Asian stores. My experience has been pleasant. I have been careful and not changed my behavior.
There's a chance the more transmissible mutation made it's way from China to the San Jose airport and to the Trader Joe's across the highway where I picked it up. Since I went three years and did nothing different, it's just a theory I have. Maybe my symptoms are different. Time will tell. Nothing about what I just said is racist. I am not a racist.
Nothing you have said has refuted the idea that I got a new mutation in March, which might medically be good for me to know. Instead you call me racist and stupid for emotional reasons that I'm not interested in.
There's very few Trump people in San Jose and very large Asian population so there's no discrimination. People here are worried about the large amount of travel between Silicon Valley and China. Santa Clara County was the first in the nation to lock down and the Asian community is still very careful. It's quite possible that I have a new mutation and it will be interesting to find out if this turns into long Covid after 12 weeks (I'm on week 6). I apologize for not making this clear and sounding like a racist.
"Just a flu" was always bullshit on two fronts: influenza is a terrible disease that has killed millions, and everyone serious knew COVID was worse.
But of course: "If you tell a lie big enough and keep repeating it, people will eventually come to believe it. The lie can be maintained only for such time as the State can shield the people from the political, economic and/or military consequences of the lie."
Wait, how has Covid been worse than Influenza? Infuenza killed around 50 million people in 1918. There were far less people back then, and travel was slower.
Influenza is a virus that is constantly mutating. I think the comparison means to the variants colloquially known as "the flu", which are the ones that make you sick for a week or maybe two. They're not comparing to all influenza variants ever.
The original strain of covid was not worse than the deadliest strains of influenza, but "common" circulating strains of influenza kill tens of thousands almost every year. I would say every year, except deaths from influenza plummeted in 2020/2021 due to masking and social distancing.
2020 and 2021 are the root of my claim that Covid is "worse". Millions died of covid during this time, but deaths from influenza dropped to minuscule levels. Some strains of influenza may have gone extinct.
Influenza that makes you sick for a week or two isn't a trivial thing either! If you're lucky, you'll just feel awful for a week. If you're unlucky, you're part of the chain of transmission that kills someone's grandparents. Get your flu shots.
> This finding should be interpreted in the context of a 2 to 3 times greater number of people being hospitalized for COVID-19 vs influenza in the US in this period.
> However, the difference in mortality rates between COVID-19 and influenza appears to have decreased since early in the pandemic; death rates among people hospitalized for COVID-19 were 17% to 21% in 2020 vs 6% in this study, while death rates for those hospitalized for influenza were 3.8% in 2020 vs 3.7% in this study.
The gap between mortality rates for covid and the flu has decreased, but covid is still clearly worse.
While you're right that then 1918 flu was worse than any variant of Covid that was more than 100 years ago, not now. Covid is now, and considerably more deadly than current flu strains.
Seems like an explanation for the body compensating for hypoxic-environments by changing its acid-base. But what is fundamentally causing these environments?
Focusing on sleep, diet/hydration, and exercise are your three major ways to combat long covid. The latter (exercise) is heavily controversial in the long covid / ME/CFS communities, but would help moderate your acid-base over the long term if you can push through the pain/fatigue/etc.
The author suggests a few things helped them. Deep breathing, diet changes surrounding acidic foods, and stretching.
My personal experience with two bouts of long covid (14 months and 7 months) has me still believing that microclots and nitric oxide deficiency being the key factors in my recovery. I've recovered twice now and back to pre-covid ability. It took me two years of constant exercise to build back to where I was. A modern Sisyphean task at that.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9212559/