I'm 22 years old and suffer from Long COVID for 3 years now. I've written a bout my experience on my blog: https://tunn3l.pro. although not bedridden, my life got totally flipped upside down. I just want to live a normal live again. To all ME/CFS and LC sufferers: Don't give up!
Hi, I couldn't glean from the articles. But it sounds like you have breathing issues from long covid? it may sound ridiculous, but I developed gluten/lactose sensitivity during covid times. If I avoid gluten, lactose, canola oil I get far fewer symptoms. I know this likely isn't your issue but I do experience positive airway pressure, coughing, burping, chronic fatigue, exessive yawning. If that sounds like you maybe a dietary intolerance could be worth checking. For what it's worth, no doctors could diagnose me, they thought I had heartburn or "its in your head". It wasn't, cutting those things out did actually help enormously.
My wife and I got Covid during the first major wave (March/April 2020). I had no symptoms at all, but my wife ended up getting long Covid. GI issues, extreme tiredness, shortness of breath, brain fog, sleep disruption, etc etc. She lost maybe 10-12% of her body weight.
After maybe 8 months of this we somehow decided to do a low-Fodmap diet (I participated for support). That included cutting out gluten and dairy (except butter). She healed right up. When we were re-introducing foods, for whatever reason, mushrooms and garlic both had negative effects, and we ended up keeping both out of our diets for a couple years.
Anyway, that's all to say I'd recommend people seriously look at their diet and try to spend a month or two doing low-fodmap if they're chronically suffering from long Covid. Worst case it doesn't help.
Anecdotally I went through a severe bout of IBS-C in my early 20s and the "cure" was to cut out wheat and dairy for an extended period of time (about a year and a half), at which point I was able to reintroduce them into my diet and I've been ~fine for about 20 years now. I've hypothesized that the lining of my intestine(s) had been damaged by the proteins and/or starches/sugars in those foods and needed a break and time to heal. I'm not a medical professional and my hypothesis has never been confirmed by one.
> I developed gluten/lactose sensitivity during covid times
Same here, at least in regard to gluten. I was in my mid-forties, and I started experiencing painful bloating that often led to difficulty breathing, and after an hour or so of pain, vomiting. The involuntary 'protein spill' alleviated the pain of bloating, but I was left exhausted for the remainder of the day.
At first, these episodes occurred about once every 2 weeks, but they grew more and more common over a few months, until it was a nearly daily occurrence. I had become overweight (I'm still working on that), so my doctor concluded that I just needed to lose some body fat. It felt like there was something more serious more going on, but US health care.
Weeks later, I stumbled upon a science article describing how millions of people develop gluten sensitivity later in life. It described familiar symptoms and progression. As an experiment, I tried eliminating gluten from my diet (which is tricky, that stuff sneaks into surprising places), and I felt much better within a few days.
In the ~2 years since, I've had a few episodes, but I can almost always find a place where gluten snuck into my food (e.g., a taco place that added flour to its corn tortillas). On one occasion, I deliberately ate a bit of bread, and sure enough, 30 minutes later I was begging the porcelain gods for forgiveness.
I miss real bread, but for me, the blowback isn't worth it.
I do not have full statistics, but people who smoke cigarettes are less prone for developing post-covid, according to the statistics I have.
My immediate thought back then was is that nicotine somehow plays the role of NAD (= B3 vitamin), thus fixing one of the core mechanisms of acquiring mitochondrial dysfunction after the covid (NAD deprivation).
This is interesting, (anecdotally) i have heard of people using nicotine patches for ADHD, and i've also (anecdotally) heard of ritalin etc being used to help people with CFG.
It's a long shot, but my mild long covid symptoms practically disappeared since I've been taking MCT oil regularly. I was motivated to try it after reading this article: https://pubmed.ncbi.nlm.nih.gov/37415915/.
I know two people that are just now getting out of bed and able to do basic things, both diagnosed with Long COVID. Knew another that was sick for a year afterwards, and my brain can't hold info like it used to. It's ugly when it gets a hold of you, that's for sure.
I have had the same issue for about as long and it's been a bear of a time to get anything done with it. Kudo's to you for taking a trip to have a treatment that might work done! It is very hard to take a lot of initiative and keep pushing (at least for me) with long covid.
For what it’s worth I had bad nerve pain from Covid and only thing that helped was weight lifting and a carnivore diet. I’d put more stock in the weight lifting though. I believe an increase in testosterone helped regulate my immune system. From what I understand women suffer more from auto immune diseases than men (at least it’s the case with MS) so maybe weight lifting is part of it.. good luck.
My sister had ME/CFS after she had a burnout after her second kid. She was never permanently bed ridden but sometimes had to spend days resting or recovering after strain. She's not well today, but much better than at her worst. There wasn't really an accepted diagnose for it when my sister got it, and she had to fight to be recognised as sick.
I do wish Dianna the best recovery and future progress.
One of my dearest friends suffers from ME/CFS - she's been bed ridden for 3 years now. Any stimulation is just so painful her. Seeing Dianna actually able to get out of bed has brought a bit of hope back into my life
Check out Midwestern Doctor blog posts. Seems to turn every possible stone to get healthy results. Changed my thinking a lot https://www.midwesterndoctor.com/
Anecdote: Back in October '24 I got Covid. My only symptom that stuck around was lack of taste on my tongue (NOT Anosmia, it's lack of salty/sweet/sour/bitter response on the tongue itself), but only on the right half of my tongue. It slowly got better, but last week I lost taste on that side of my tongue again. The taste is coming back again now.
Anyway, I have no idea what's going on with me; it's not really severe enough to investigate further right now, and my case is only the tiniest part related to Dianna's.
Zinc is a critical cofactor for enzymes involved in the regeneration and function of taste receptor cells. These cells have a high turnover rate, and zinc deficiency can impair their renewal. Zinc supplementation is usually the first line of treatment in taste disturbances, especially when nerve damage is not suspect, and it's often effective. See, e.g.: https://www.sciencedirect.com/science/article/pii/S246854882...
It's possible that covid infection somehow disrupted zinc homeostasis. Taste receptor cells also express ACE2, which is what the virus tends to latch onto... I suppose a feasible mechanism -- or at least a hypothesis -- is that viral binding to ACE2 may have downregulated zinc-dependent signaling pathways (for e.g., those involving metallothioneins or zinc-finger transcription factors).
In circa 2022 I got covid and lost smell. First I couldn't smell the spices in the kitchen, but I thought nothing of it. But some days later, I couldn't smell WD-40. That's when I noticed I can't smell anything at all. My sense of smell never really recovered. After about a year, I could faintly smell menthol. Now I have to really try hard if I want to get some faint sense of smell, but a lot of time I just don't smell anything.
I completely lost taste and smell around 2022 too. It wasn't like a clogged nose, I could absolutely not sense anything with my tongue and nose (except for touch). I read stories about it not coming back for some people and it absolutely shook me. At that moment I realized how much I love delicious food and that smell is a great indicator for things you might not expect (e.g. heat).
It luckily fully came back in my case, but it took many months. But it was properly scary! So weird that a viral infection (that didn't even make me very sick) could have such long-lasting and potentially life-altering effects.
Same. Lost both smell and taste for a few days after I got COVID in 2021. My taste came back quickly, but my sense of smell took longer to come back and is still probably about 50% diminished. I can't smell things from a distance, only up-close or if it's really strong. Like I can't tell if my house stinks because my garbage needs to be taken out, but I can smell it up close. I've just relegated myself to not being able to smell much anymore which I guess is better than some of the other Long COVID symptoms out there. I do miss smelling things though.
take a flashlight to your nostrils in a dark room with a mirror, are they inflamed? It could be reflux/silent reflux like I have, gases inflame the sinuses, then it's hard to breathe.
I’ve had long covid for a couple of years now. It’s a really difficult disease, in part because different people react very differently, and there may even be multiple mechanisms so it’s not exactly a single disease.
What has really helped me has been wearing a nicotine patch occasionally. I was never a smoker, but I came across this very small study [1] and thought it was worth a go because a) I was getting desperate and b) nicotine in such low doses is not that risky (7mg patch, worn for 2 weeks).
I know there’s counter-studies suggesting nicotine doesn’t help with resistance. My experience is anecdotal, but I saw rapid improvement in cognition and fatigue level (particularly post-exercise). My guess is that for some people the particular mechanism behind their long covid is one that this can help with, but not for everyone.
That nicotine patches help with focus is no surprise if you have been naive to nicotine before. I have been using patches on and off (like years of no usage in-between) for focus, and 7mg is actually a lot. Is there anything indicating that it is not just the effect of nicotine, and truly helps against whatever lingers inside your body (the spike protein)?
Given other people around me talking about treating their long covid with nicotine since it went through social media last year, I suppose you don't know about / didn't try the Natto (nattokinase) [1] / NAC route [2] (for which there were early studies showing they can dissolve the SARS-Cov2 spike protein)..? Or does the community consider that a dead end by now?
That there is a political echo chamber-driven division between those routes is a bit strange and dangerous, isn't it. With nicotine you will need to be careful about its effects on blood pressure, and it would be better to not even think about vaping (some of the flavoured products could be equally/more addictive to/than cigarettes [3]).
7mg was the weakest patch I could get at a pharmacy (in the UK), and as I understand it that’s the release over 24 hours; I wore them only during the day so it’s a lower dose. If it’s proportional it’s ~5mg, which is 2-3 cigarettes, but cigarettes deliver it much faster, I believe. I have since spoken to a doctor who suggested that if I relapse I should cut them in half to lower the dose. Did you do something like that?
The main reasons I think it had more than just a concentration-enhancing effect are a) the effect after 2 weeks of patches seems to be long-lasting (months, at least) and b) my post-exertional fatigue, which was fairly severe (going for a light jog would leave me partially bedridden for a couple of days) has also gone. But to be fair, if the fatigue is caused by nervous system dysregulation then perhaps that somehow accounts for it, and it’s equally possible both these effects will wear off in time.
I have not seen nattokinase mentioned before, thanks. Interesting that, aside from the effect on the spike protein, it’s also supposed to help prevent blood clots. A friend with long covid was enrolled in a study which treated micro blood clots and she saw significant improvement from that. But I was tested a couple of times for micro blood clots and it came back negative, so again I think the long covid mechanism is not consistent.
That's great to hear. I remember Simone Giertz breaking out the bad news to her followers and sounding no less serious than when she was talking about her own brain surgery.
My former co-worker got COVID twice, as preventive measures didn't fit into his moral framework, and the second time resulted in a mild case of long COVID. I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
Long COVID is no joke and seriously affect one's work as well private life.
>I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
I've noticed some of that with family members that have gotten covid, but it's hard to say that it's definitely that as they are older and age related decline is hard to nail down too.
Yeah cause people actually follow the rules. I was back in NZ from December 19 to like end of January 2020 and sw covid becoming a thing, back thru Bangkok and everyone's masked up, then to the UK again where people hadn't even heard anything about it ha ha. That was the times of the eerily orange daytime sky because of the Aussie fires.
Lockdown here everyone and their Mum is screwing around at the park, UK does not really have an attitude of social good imo, outside of one's own family.
I would say we don't really know if it's so called Long COVID. I mean that I have taken care of an ME/CFS sufferer long before COVID was around. So it's a set of diseases grouped by their similar symptoms. Autism and ADHD seem similar in that regard
Weird gatekeeping but ok; COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname. ME/CFS developed after a covid infection.
Modern understanding of autism / ADHD sees the two as part of a spectrum of neurodiverse conditions (think of an audio mixer of many different traits, more than a side-to-side slider), but I don't see the connection with ME/CFS, whether or not it's caused by a covid infection.
> Weird gatekeeping but ok; COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname. ME/CFS developed after a covid infection.
ME/CFS has been around for way longer - prior to Covid, the Epstein-Barr virus was strongly suspected to be a trigger for it. Unfortunately ME/CFS was (and in many cases still isn't) widely known among doctors, so diagnoses were hard to come by and treatment even harder.
At least now that there is money flowing into ME/CFS research and knowledge about it gets more widespread, "old time" ME/CFS sufferers have a perspective now...
The "so called Long COVID" really just means "I got covid and I remain unwell in some way, long term". I'm not sure it needs to be questioned if those two qualifying things are given. Very well might be the same thing as ME/CFS, or might not, I don't think we have a conclusive answer yet about what causes either.
"Long COVID" encompasses several very distinct nosological categories, which makes it a difficult term to talk about. There are at least four distinct subtypes - people who had severe acute illness and suffered respiratory injury, people who had severe acute illness and suffered cardiovascular or renal injury, people who had a relatively mild acute illness but developed long-term neurological or musculoskeletal sequelae, and people who developed those latter symptoms during the COVID pandemic without actually being infected with COVID. All of those types of suffering are very real, but may have very different causes and require different treatments.
Eh, the advantage of "long Covid" is that syndromes are clusters of symptoms without a known underlying cause. "Long Covid" may give ME/CFS symptoms, but if you solicit 100 Long Covid sufferers for a study, you are more likely to be able to find underlying similarities than for 100 ME/CFS suffers.
The results would potentially scale to some sunset of ME/CFS suffers neho never had Covid, but it makes sense to start with the group we at least have a common starting point on the cause.
This is such great news! The best news of my day. She is standing in a brightly lit room and smiling! This is so much better than her condition before.
Readit News
After maybe 8 months of this we somehow decided to do a low-Fodmap diet (I participated for support). That included cutting out gluten and dairy (except butter). She healed right up. When we were re-introducing foods, for whatever reason, mushrooms and garlic both had negative effects, and we ended up keeping both out of our diets for a couple years.
Anyway, that's all to say I'd recommend people seriously look at their diet and try to spend a month or two doing low-fodmap if they're chronically suffering from long Covid. Worst case it doesn't help.
insane that it's still so common...
Same here, at least in regard to gluten. I was in my mid-forties, and I started experiencing painful bloating that often led to difficulty breathing, and after an hour or so of pain, vomiting. The involuntary 'protein spill' alleviated the pain of bloating, but I was left exhausted for the remainder of the day.
At first, these episodes occurred about once every 2 weeks, but they grew more and more common over a few months, until it was a nearly daily occurrence. I had become overweight (I'm still working on that), so my doctor concluded that I just needed to lose some body fat. It felt like there was something more serious more going on, but US health care.
Weeks later, I stumbled upon a science article describing how millions of people develop gluten sensitivity later in life. It described familiar symptoms and progression. As an experiment, I tried eliminating gluten from my diet (which is tricky, that stuff sneaks into surprising places), and I felt much better within a few days.
In the ~2 years since, I've had a few episodes, but I can almost always find a place where gluten snuck into my food (e.g., a taco place that added flour to its corn tortillas). On one occasion, I deliberately ate a bit of bread, and sure enough, 30 minutes later I was begging the porcelain gods for forgiveness.
I miss real bread, but for me, the blowback isn't worth it.
If you want another thing to try, I found that temporarily wearing a nicotine patch [1] helped a lot. But it seems like it doesn’t work for everyone.
[1] https://pubmed.ncbi.nlm.nih.gov/36650574/
My immediate thought back then was is that nicotine somehow plays the role of NAD (= B3 vitamin), thus fixing one of the core mechanisms of acquiring mitochondrial dysfunction after the covid (NAD deprivation).
I do wish Dianna the best recovery and future progress.
Anyway, I have no idea what's going on with me; it's not really severe enough to investigate further right now, and my case is only the tiniest part related to Dianna's.
Also: https://pubmed.ncbi.nlm.nih.gov/23305423/
It's possible that covid infection somehow disrupted zinc homeostasis. Taste receptor cells also express ACE2, which is what the virus tends to latch onto... I suppose a feasible mechanism -- or at least a hypothesis -- is that viral binding to ACE2 may have downregulated zinc-dependent signaling pathways (for e.g., those involving metallothioneins or zinc-finger transcription factors).
It luckily fully came back in my case, but it took many months. But it was properly scary! So weird that a viral infection (that didn't even make me very sick) could have such long-lasting and potentially life-altering effects.
What has really helped me has been wearing a nicotine patch occasionally. I was never a smoker, but I came across this very small study [1] and thought it was worth a go because a) I was getting desperate and b) nicotine in such low doses is not that risky (7mg patch, worn for 2 weeks).
I know there’s counter-studies suggesting nicotine doesn’t help with resistance. My experience is anecdotal, but I saw rapid improvement in cognition and fatigue level (particularly post-exercise). My guess is that for some people the particular mechanism behind their long covid is one that this can help with, but not for everyone.
[1] https://pubmed.ncbi.nlm.nih.gov/36650574/
Given other people around me talking about treating their long covid with nicotine since it went through social media last year, I suppose you don't know about / didn't try the Natto (nattokinase) [1] / NAC route [2] (for which there were early studies showing they can dissolve the SARS-Cov2 spike protein)..? Or does the community consider that a dead end by now?
That there is a political echo chamber-driven division between those routes is a bit strange and dangerous, isn't it. With nicotine you will need to be careful about its effects on blood pressure, and it would be better to not even think about vaping (some of the flavoured products could be equally/more addictive to/than cigarettes [3]).
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC9458005/
[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC9663386/
[3] https://pubmed.ncbi.nlm.nih.gov/31536738/
7mg was the weakest patch I could get at a pharmacy (in the UK), and as I understand it that’s the release over 24 hours; I wore them only during the day so it’s a lower dose. If it’s proportional it’s ~5mg, which is 2-3 cigarettes, but cigarettes deliver it much faster, I believe. I have since spoken to a doctor who suggested that if I relapse I should cut them in half to lower the dose. Did you do something like that?
The main reasons I think it had more than just a concentration-enhancing effect are a) the effect after 2 weeks of patches seems to be long-lasting (months, at least) and b) my post-exertional fatigue, which was fairly severe (going for a light jog would leave me partially bedridden for a couple of days) has also gone. But to be fair, if the fatigue is caused by nervous system dysregulation then perhaps that somehow accounts for it, and it’s equally possible both these effects will wear off in time.
I have not seen nattokinase mentioned before, thanks. Interesting that, aside from the effect on the spike protein, it’s also supposed to help prevent blood clots. A friend with long covid was enrolled in a study which treated micro blood clots and she saw significant improvement from that. But I was tested a couple of times for micro blood clots and it came back negative, so again I think the long covid mechanism is not consistent.
My former co-worker got COVID twice, as preventive measures didn't fit into his moral framework, and the second time resulted in a mild case of long COVID. I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
Long COVID is no joke and seriously affect one's work as well private life.
I've noticed some of that with family members that have gotten covid, but it's hard to say that it's definitely that as they are older and age related decline is hard to nail down too.
No false memories or loss of perception of time like in my older relatives going through age-related cognitive decline.
Lockdown here everyone and their Mum is screwing around at the park, UK does not really have an attitude of social good imo, outside of one's own family.
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Modern understanding of autism / ADHD sees the two as part of a spectrum of neurodiverse conditions (think of an audio mixer of many different traits, more than a side-to-side slider), but I don't see the connection with ME/CFS, whether or not it's caused by a covid infection.
It already had a name - post-viral fatigue syndrome. It's happened after other viruses before.
ME/CFS has been around for way longer - prior to Covid, the Epstein-Barr virus was strongly suspected to be a trigger for it. Unfortunately ME/CFS was (and in many cases still isn't) widely known among doctors, so diagnoses were hard to come by and treatment even harder.
At least now that there is money flowing into ME/CFS research and knowledge about it gets more widespread, "old time" ME/CFS sufferers have a perspective now...
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A better term may be "Long Virus" since multiple viruses can trigger it, Covid just happens to be the most recent pandemic.
The results would potentially scale to some sunset of ME/CFS suffers neho never had Covid, but it makes sense to start with the group we at least have a common starting point on the cause.
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Keeping my fingers crossed for a quick recovery!