19 ms·

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 https://tunn3l.pro. although not b

by tunn3l 2y ago

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 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!

jddj 2y ago
You write very well, and there are some nice insights in there. I clicked through out of curiosity but ended up reading a lot.
krageon 2y ago
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.
penjelly 2y ago
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.
- qiine 2y ago
  > "its in your head" insane that it's still so common...
  - dylan604 2y ago
    Seems to me like that would be the number one offered advice when you get less than five minutes of time with a doctor under typical US doctor visits. Seems like a very convenient way to cycle patients through faster. The only downside is there's not really any scripts you can write which lowers your quota for which ever bigPharma the doctor has sold their soul
  - mikeyouse 2y ago
    I really get the sentiment that if you look at people who are told "it's all in your head" and then they find some obscure condition that is treatable, it might be considered borderline malpractice for the physician to have told them that... but does the frequency with which patients are told that maybe give some insight into how many psychosomatic patients there really are out there?
    - carom 2y ago
      I don't think so. I have literal objective tested allergies and people ask me if I think the symptoms (allergic rhinitis) are psychosomatic all the time. So many people I talk to have real symptoms and down play them as probably having some mental component.
    - parrellel 2y ago
      I mean, we had actual doctors doing the "In your head" song and dance before my wife was diagnosed with RA for a good 3-4 months. There was visible swelling/blistering and she couldn't walk unassisted. This is an anecdote of course, but, this was a very obvious condition, and we got "in your head"ed.
      - theshackleford 2y ago
        I was told I was “imagining” things, probably as a result of stress from overworking. And told if I relaxed, I’d find out I in fact had no problems. lol, I had a spinal cord injury. I laugh when I think about it, but there has been a lot of anger to get here.
  - II2II 2y ago
    In my mind, that doesn't make the symptoms any less real to the person suffering from them and does absolutely nothing to remedy the situation. Even if it is in the person's head, any doctor offering that advice should be facing consequences for not offering a legitimate path for treatment.
    - burntalmonds 2y ago
      Many conditions aren't well understood and simply don't have effective treatments.
      - II2II 2y ago
        My apologies if my comment sounded insensitive towards people who have real physical ailments, but there are cases where psychology may play a role and I firmly believe the medical system should take responsibility for those cases rather than shrugging them off and leaving the patient to figure it out on their own. First and foremost, they are leaving the patient suffering. Then there are other factors to consider, ranging from patients seeking out ineffective and unproven treatments for something that may not have a physiological basis to something having a physiological basis not being diagnosed because it was dismissed as having a psychological basis.
    - kkarakk 2y ago
      They do - we call them therapists and they are on the hook. Medical doctors deal with BODY related issues.
      - Wobbles42 2y ago
        I'm not a medical professional, but as a firmware engineer I do bristle a bit at the suggestion that "hardware" and "software" problems can be so cleanly separated.
  - tartoran 2y ago
    "it's in your head" diagnosis is when the medical establishment gives up and outsources the treatment to the patients themselves and that quite often does not end up well for the patient regardless of the true cause of the illness.
  - fragmede 2y ago
    it's in my head but guess what? that's where I live! I didn't think my way into this particular problem and I can't think my way out this particular problem and I need external help to get back to normal.
  - eleveriven 2y ago
    I had the same reaction. And it's so disappointing.
- DamnInteresting 2y ago
  > 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.
  - penjelly 2y ago
    100%. it took me years to consider gluten/lactose as the root cause, because I'd been eating them for years and definitely never almost suffocated like the symptoms it causes now for me now.
- mwpmaybe 2y ago
  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.
  - rafram 2y ago
    I had a similar experience with dairy. (Wheat is still out.) It used to give me severe digestive symptoms and inflammation, but after cutting it out for a year or so, I've been able to reintroduce it without any noticeable symptoms. No GI I've seen has really had answers for me, and I'm not really interested in seeing an "alternative medicine" doctor, although I'm sure they would claim to know what's going on. But I'd recommend trying an elimination diet to anyone who has unexplainable symptoms in that vein. The limitations are annoying at first, but you get used to it.
    - Projectiboga 2y ago
      It's pathogenic yeasts that really drive the whole thing, and milk inflames the immune response. The trick with COVID is to take melatonin during and after it. Gut health is a longer journey as leaky gut takes awhile to heal.
- throwforfeds 2y ago
  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.
  - Wobbles42 2y ago
    Yet another anecdote, but my wife and I both got COVID. I was quite a bit sicker than she was. I later found out that I'm a type II diabetic, and almost certainly was at the time I had COVID given the timing. I had fairly severe fatigue symptoms preceding that diagnosis, and the diet/exercise changes I made to bring that under control look a lot like what your wife did, and also seem to have alleviated the fatigue. There was about a 12 month separation between recovering from COVID and my own fatigue symptoms. Had the timing been a bit different I likely would have assumed I was suffering from long COVID, and would probably have been less inclined to see a doctor as a result. None of this is to suggest that any given person is suffering from diabetes, that long COVID should be treated the same way, or that any given person with long COVID is self diagnosing. For anyone that is though, definitely consider talking to a doctor. Coincidences happen and you could have something that is both unrelated and treatable going on.
  - pjc50 2y ago
    Another anecdote: I experienced tiredness and persistent coughing after covid. I tried a gluten-free diet and .. saw absolutely no difference at all.
  - jermaustin1 2y ago
    So, I'm not doctor, but I know that a lot of autoimmune diseases (I have a couple) can appear after a bad infection that your body fights off. So getting checked for the common AI diseases (Hashimoto's/Grave's, T1D, Lupus (It's never lupus), Crohn's, etc.). Anti-inflammatory diets seem to help a lot of people with autoimmune disorders, because a flareup typically stems from stress or inflammation. Removing dairy and wheat didn't do anything for me, though. I never got COVID, but I had a bad flu when I was a teen in the early 00s, and "new" research suggests that is when my body flipped a switch and now I develop a bunch of antibodies that attack a few systems, but good news is I'm basically NEVER sick anymore (might just be a coincidence, though).
- eleveriven 2y ago
  It’s frustrating how often things get dismissed as "in your head" when the right tweak can make a huge difference.
simondanerd 2y ago
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.
teebSQAD9 2y ago
I’ve had it for a few years too, it’s really hard, hang in there! 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/ https://pubmed.ncbi.nlm.nih.gov/36650574/
- lawlessone 2y ago
  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.
  - hyoomen 2y ago
    For people curious about the use of nicotine patches in the treatment of Long Covid, check https://x.com/TheNicotineTest/status/1884186271792390266 https://x.com/TheNicotineTest/status/1884186271792390266 And if you have the ability, please support research into ME/cfs, Long Covid, and other post infection illness.
- garganzol 2y ago
  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).
  - tordrt 2y ago
    Couldnt it just be a selection effect? People who smoke cigarettes are less neurotic. I would assume people with long-covid are on average more neutrotic, as people with high neuroticism is more likely to attribute sickness to long-covid?
gbalint 2y ago
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/ https://pubmed.ncbi.nlm.nih.gov/37415915/.
- mwpmaybe 2y ago
  What's your regimen look like?
  - gbalint 2y ago
    I drink two cups of coffee a day (in the morning and after lunch), and I put a tablespoon of mct oil in each of them. In the first few days I had minor diarrhea, probably it makes sense to introduce it more incrementally to avoid that.
- abustamam 2y ago
  Which oil do you use?
  - gbalint 2y ago
    I only started taking mct oil a few weeks ago (but I felt the effects basically immediately). I've been using this product (I think it is a local hungarian brand) https://nordvital.hu/products/mct-olaj-500-ml https://nordvital.hu/products/mct-olaj-500-ml , but I doubt that the effects are specific to this one.
mentos 2y ago
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.

by tunn3l 2y ago

jddj 2y ago

You write very well, and there are some nice insights in there. I clicked through out of curiosity but ended up reading a lot.

krageon 2y ago

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.

penjelly 2y ago

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.

qiine 2y ago
> "its in your head" insane that it's still so common...
- dylan604 2y ago
  Seems to me like that would be the number one offered advice when you get less than five minutes of time with a doctor under typical US doctor visits. Seems like a very convenient way to cycle patients through faster. The only downside is there's not really any scripts you can write which lowers your quota for which ever bigPharma the doctor has sold their soul
- mikeyouse 2y ago
  I really get the sentiment that if you look at people who are told "it's all in your head" and then they find some obscure condition that is treatable, it might be considered borderline malpractice for the physician to have told them that... but does the frequency with which patients are told that maybe give some insight into how many psychosomatic patients there really are out there?
  - carom 2y ago
    I don't think so. I have literal objective tested allergies and people ask me if I think the symptoms (allergic rhinitis) are psychosomatic all the time. So many people I talk to have real symptoms and down play them as probably having some mental component.
  - parrellel 2y ago
    I mean, we had actual doctors doing the "In your head" song and dance before my wife was diagnosed with RA for a good 3-4 months. There was visible swelling/blistering and she couldn't walk unassisted. This is an anecdote of course, but, this was a very obvious condition, and we got "in your head"ed.
    - theshackleford 2y ago
      I was told I was “imagining” things, probably as a result of stress from overworking. And told if I relaxed, I’d find out I in fact had no problems. lol, I had a spinal cord injury. I laugh when I think about it, but there has been a lot of anger to get here.
- II2II 2y ago
  In my mind, that doesn't make the symptoms any less real to the person suffering from them and does absolutely nothing to remedy the situation. Even if it is in the person's head, any doctor offering that advice should be facing consequences for not offering a legitimate path for treatment.
  - burntalmonds 2y ago
    Many conditions aren't well understood and simply don't have effective treatments.
    - II2II 2y ago
      My apologies if my comment sounded insensitive towards people who have real physical ailments, but there are cases where psychology may play a role and I firmly believe the medical system should take responsibility for those cases rather than shrugging them off and leaving the patient to figure it out on their own. First and foremost, they are leaving the patient suffering. Then there are other factors to consider, ranging from patients seeking out ineffective and unproven treatments for something that may not have a physiological basis to something having a physiological basis not being diagnosed because it was dismissed as having a psychological basis.
  - kkarakk 2y ago
    They do - we call them therapists and they are on the hook. Medical doctors deal with BODY related issues.
    - Wobbles42 2y ago
      I'm not a medical professional, but as a firmware engineer I do bristle a bit at the suggestion that "hardware" and "software" problems can be so cleanly separated.
- tartoran 2y ago
  "it's in your head" diagnosis is when the medical establishment gives up and outsources the treatment to the patients themselves and that quite often does not end up well for the patient regardless of the true cause of the illness.
- fragmede 2y ago
  it's in my head but guess what? that's where I live! I didn't think my way into this particular problem and I can't think my way out this particular problem and I need external help to get back to normal.
- eleveriven 2y ago
  I had the same reaction. And it's so disappointing.
DamnInteresting 2y ago
> 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.
- penjelly 2y ago
  100%. it took me years to consider gluten/lactose as the root cause, because I'd been eating them for years and definitely never almost suffocated like the symptoms it causes now for me now.
mwpmaybe 2y ago
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.
- rafram 2y ago
  I had a similar experience with dairy. (Wheat is still out.) It used to give me severe digestive symptoms and inflammation, but after cutting it out for a year or so, I've been able to reintroduce it without any noticeable symptoms. No GI I've seen has really had answers for me, and I'm not really interested in seeing an "alternative medicine" doctor, although I'm sure they would claim to know what's going on. But I'd recommend trying an elimination diet to anyone who has unexplainable symptoms in that vein. The limitations are annoying at first, but you get used to it.
  - Projectiboga 2y ago
    It's pathogenic yeasts that really drive the whole thing, and milk inflames the immune response. The trick with COVID is to take melatonin during and after it. Gut health is a longer journey as leaky gut takes awhile to heal.
throwforfeds 2y ago
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.
- Wobbles42 2y ago
  Yet another anecdote, but my wife and I both got COVID. I was quite a bit sicker than she was. I later found out that I'm a type II diabetic, and almost certainly was at the time I had COVID given the timing. I had fairly severe fatigue symptoms preceding that diagnosis, and the diet/exercise changes I made to bring that under control look a lot like what your wife did, and also seem to have alleviated the fatigue. There was about a 12 month separation between recovering from COVID and my own fatigue symptoms. Had the timing been a bit different I likely would have assumed I was suffering from long COVID, and would probably have been less inclined to see a doctor as a result. None of this is to suggest that any given person is suffering from diabetes, that long COVID should be treated the same way, or that any given person with long COVID is self diagnosing. For anyone that is though, definitely consider talking to a doctor. Coincidences happen and you could have something that is both unrelated and treatable going on.
- pjc50 2y ago
  Another anecdote: I experienced tiredness and persistent coughing after covid. I tried a gluten-free diet and .. saw absolutely no difference at all.
- jermaustin1 2y ago
  So, I'm not doctor, but I know that a lot of autoimmune diseases (I have a couple) can appear after a bad infection that your body fights off. So getting checked for the common AI diseases (Hashimoto's/Grave's, T1D, Lupus (It's never lupus), Crohn's, etc.). Anti-inflammatory diets seem to help a lot of people with autoimmune disorders, because a flareup typically stems from stress or inflammation. Removing dairy and wheat didn't do anything for me, though. I never got COVID, but I had a bad flu when I was a teen in the early 00s, and "new" research suggests that is when my body flipped a switch and now I develop a bunch of antibodies that attack a few systems, but good news is I'm basically NEVER sick anymore (might just be a coincidence, though).
eleveriven 2y ago
It’s frustrating how often things get dismissed as "in your head" when the right tweak can make a huge difference.

simondanerd 2y ago

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.

teebSQAD9 2y ago

I’ve had it for a few years too, it’s really hard, hang in there! 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/ https://pubmed.ncbi.nlm.nih.gov/36650574/

lawlessone 2y ago
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.
- hyoomen 2y ago
  For people curious about the use of nicotine patches in the treatment of Long Covid, check https://x.com/TheNicotineTest/status/1884186271792390266 https://x.com/TheNicotineTest/status/1884186271792390266 And if you have the ability, please support research into ME/cfs, Long Covid, and other post infection illness.
garganzol 2y ago
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).
- tordrt 2y ago
  Couldnt it just be a selection effect? People who smoke cigarettes are less neurotic. I would assume people with long-covid are on average more neutrotic, as people with high neuroticism is more likely to attribute sickness to long-covid?

gbalint 2y ago

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/ https://pubmed.ncbi.nlm.nih.gov/37415915/.

mwpmaybe 2y ago
What's your regimen look like?
- gbalint 2y ago
  I drink two cups of coffee a day (in the morning and after lunch), and I put a tablespoon of mct oil in each of them. In the first few days I had minor diarrhea, probably it makes sense to introduce it more incrementally to avoid that.
abustamam 2y ago
Which oil do you use?
- gbalint 2y ago
  I only started taking mct oil a few weeks ago (but I felt the effects basically immediately). I've been using this product (I think it is a local hungarian brand) https://nordvital.hu/products/mct-olaj-500-ml https://nordvital.hu/products/mct-olaj-500-ml , but I doubt that the effects are specific to this one.

mentos 2y ago

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.