3 ms·

Here’s my experience with long covid: - got infected in December 2021 - 10 days of fatigue and headaches, couldn’t think clearly - got better but had trouble

Here’s my experience with long covid: - got infected in December 2021 - 10 days of fatigue and headaches, couldn’t think clearly - got better but had trouble breathing the following three months and had to stop any intense physical activity - during the whole year 2022, every time I got any slight immune system challenge (catch a cold; have a short night sleep), the breathing problems would come back and stay with me for 2-3 weeks - in February 2023 it seemed to have went away. No breathing problems for 4 months, yeepee! - 2nd week of February and out of nowhere, I started feeling tired, but had no other symptoms. So I spent the week taking it easy and just working a less and sleeping a lot - a week later, I went to get groceries and could feel my heart pump heavily through my chest, almost fainted twice - since then it got worse and now I can’t walk, take the stairs or even sit upright on a chair for more than a couple minutes, else I risk fainting (and my heart beats like crazy the whole time) - spent the past 4 weeks working from bed. Can’t drive; can’t walk more than 1 min; and can’t sit upright - I feel fatigued almost all the time and have the same symptoms as when I had covid in 2021, symptoms I never had in my life before - I don’t know if / when it will improve, doctor didn’t find anything I don’t know if it’s because of long covid, the vaccine or just bad luck but I’m positive I never had these kinds of symptoms before catching covid in 2021. And now 2 years later I live with a debilitating disease that makes me objectively disabled for most things. I’m 33 and otherwise healthy. This is not a hallucination.

terminatornet 4y ago
i'm sorry you're dealing with this and I hope your symptoms improve soon.
- dagorenouf 4y ago
  Thanks! Looking at the bright side and grateful to be running my own startup from a laptop, so at least I can still work. Many others aren’t as lucky
justinclift 4y ago
> - since then it got worse and now I can’t walk, take the stairs or even sit upright on a chair for more than a couple minutes, else I risk fainting (and my heart beats like crazy the whole time) As a super simple thought, if you take an iron supplement do you reckon it might help at all? Asking because when I occasionally get that, it generally means I'm so low in iron that I need to supplement for a while. (Some history of mild anaemia in the family, but nothing to worry about in itself.) Note, not thinking it'd be a solution here. More a workaround that might help. :)
- dagorenouf 4y ago
  I’m experimenting different supplements one by one to see if they have an impact. Right now trying Lactoferrin for the past 10 days which does seem to improve things a bit. it helps transport iron to the right places + supposedly helps dry up the virus by holding the iron from it (iirc). I might add iron on top in a few days to see if it helps, thanks! Zinc seems to have some use as well.
  - kevviiinn 4y ago
    Have you tried magnesium? Do you get enough potassium?
    - dagorenouf 4y ago
      I’ve been taking 500mg magnesium caps every night. But potassium I haven’t, what do you think it would help with?
      - kevviiinn 4y ago
        It isn't advised to supplement potassium but you can get a lot from bananas or dates. It can help with a lot of things from muscle relaxation to blood pressure, lower all cause mortality has been associated with daily potassium intake of (iirc) 4.4 or 4.8g+ Also make sure you have a chelated form of magnesium for improved bioavailability, the oxide kinda sucks
mancerayder 4y ago
Here is some advice that I am not ashamed to dispense here, not as a medical professional but someone who had long covid symptoms for a period of months and spent a lot of time with long covid specialists and doing research (dispensing with the formalities): If you haven't, go to a cardiologist and have them do a Stress Test (they hook you up and watch you for 10m as you walk uphill on a treadmill and increase intensity), and do a test for POTS. One POTS symptom would be dizziness, a big blood pressure change and bpm change when going from a lying down position to standing upright. It's something to rule out. Another something you mentioned suggested exercise intolerance. One way to deal with that is very very slow and steady training of your cardio system and even strength training as well. Going too hard can set you back, but going at the right pace can make you better. [edit]: Some additional information. You pick what you train (running, cycling, some sport, weight lifting, whatever), you do it at the smallest level, and you wait 48-72 hrs to see if you get worse. If you don't get worse, you do it again at slightly more than that pace. If you get worse (I had shortness of breath, insomnia, night sweats, and random chest pounding, but others get debilitating fatigue or other inflammatory symptoms), you back off because it was too much. Another possibility is anxiety (feeling your heart pumping and almost passing out could be physiologically induced, it could be anxiety-induced, or it could be a feedback cycle between them!). All the above I learned at a long covid hospital which had specialists (pulmonology, cardiology, etc.) that were up to date on academic medicine. They were pretty dark, some of them, and as they say a man with a hammer sees only nails. But you sound like you seek answers, and hopefully the above gives some bread crumbs of some use.
- dagorenouf 4y ago
  Thanks a lot, I’m seeing a cardiologist in 2 weeks (couldn’t get an appointment sooner where I live) and will ask them for stress test and post. One thing I don’t understand though: the day before I got bad again last month, I walked 10km and even ran a few times in the same day with 0 problem. I also use to do weight training before getting sick in 2021, so could it still be exercise intolerance? As for anxiety, it’s something i only had occasionally before, and lately I’ve been feeling more relaxed as my financial situation improved. But maybe I’m missing something and this illness makes me 10x more sensitive to anxiety so even what I consider low levels become problematic.
VagueMag 4y ago
Just wondering if you're familiar with Dr. Farid Jalali and his theory Long COVID is a form of or related to Mast Cell Activation Syndrome?
- dagorenouf 4y ago
  I’m hanging out Reddit long haulers a lot and seen it but haven’t dug deep yet, what’s your takeaway from it?
  - VagueMag 4y ago
    Have not dug into it in all that much depth either, but Jalali was one of the first and loudest proponents of theories of SARS-CoV-2 being primarily an issue of vascular (as opposed to respiratory) pathologies, and fluvoxamine as a form of treatment which, while not a cure, did wind up being shown to be somewhat effective. From the little bit I saw it seemed like maybe he was recommending aggressive use of antihistamines. I believe some of it may have been incorporated into the FLCCC IRECOVER protocol. The other thing that he seemed to believe might work is anticoagulants, but he was concerned that the doses that would need to be taken are potentially hazardous in and of themselves.
    - dagorenouf 4y ago
      thank you! I'm trying different drugs as well as diet changes one after the other to see what makes me feel better. added anti histamines to my list to try next
thepaulroman 4y ago
This sounds similar to what happened to Physics Girl from YouTube, and she has ME/CFS. Consult with your doctor and physiotherapist. Get well soon!
- dagorenouf 4y ago
  Thank you! Yeah it seems similar, the mitigation techniques from me/cfs folks definitely helped me. I didn’t know physics girl but checked it out and wow I feel for her. I managed to thankfully get rid of most fatigue by changing my diet + not moving out of bed so I can still work. When I couldn’t it was the worth feeling. Hope she gets better soon.
seydor 4y ago
Some advice for long covid from Mount Sinai https://www.youtube.com/watch?app=desktop&v=tFQBcu5qlmE https://www.youtube.com/watch?app=desktop&v=tFQBcu5qlmE

terminatornet 4y ago

i'm sorry you're dealing with this and I hope your symptoms improve soon.

dagorenouf 4y ago
Thanks! Looking at the bright side and grateful to be running my own startup from a laptop, so at least I can still work. Many others aren’t as lucky

justinclift 4y ago

> - since then it got worse and now I can’t walk, take the stairs or even sit upright on a chair for more than a couple minutes, else I risk fainting (and my heart beats like crazy the whole time) As a super simple thought, if you take an iron supplement do you reckon it might help at all? Asking because when I occasionally get that, it generally means I'm so low in iron that I need to supplement for a while. (Some history of mild anaemia in the family, but nothing to worry about in itself.) Note, not thinking it'd be a solution here. More a workaround that might help. :)

dagorenouf 4y ago
I’m experimenting different supplements one by one to see if they have an impact. Right now trying Lactoferrin for the past 10 days which does seem to improve things a bit. it helps transport iron to the right places + supposedly helps dry up the virus by holding the iron from it (iirc). I might add iron on top in a few days to see if it helps, thanks! Zinc seems to have some use as well.
- kevviiinn 4y ago
  Have you tried magnesium? Do you get enough potassium?
  - dagorenouf 4y ago
    I’ve been taking 500mg magnesium caps every night. But potassium I haven’t, what do you think it would help with?
    - kevviiinn 4y ago
      It isn't advised to supplement potassium but you can get a lot from bananas or dates. It can help with a lot of things from muscle relaxation to blood pressure, lower all cause mortality has been associated with daily potassium intake of (iirc) 4.4 or 4.8g+ Also make sure you have a chelated form of magnesium for improved bioavailability, the oxide kinda sucks

mancerayder 4y ago

Here is some advice that I am not ashamed to dispense here, not as a medical professional but someone who had long covid symptoms for a period of months and spent a lot of time with long covid specialists and doing research (dispensing with the formalities): If you haven't, go to a cardiologist and have them do a Stress Test (they hook you up and watch you for 10m as you walk uphill on a treadmill and increase intensity), and do a test for POTS. One POTS symptom would be dizziness, a big blood pressure change and bpm change when going from a lying down position to standing upright. It's something to rule out. Another something you mentioned suggested exercise intolerance. One way to deal with that is very very slow and steady training of your cardio system and even strength training as well. Going too hard can set you back, but going at the right pace can make you better. [edit]: Some additional information. You pick what you train (running, cycling, some sport, weight lifting, whatever), you do it at the smallest level, and you wait 48-72 hrs to see if you get worse. If you don't get worse, you do it again at slightly more than that pace. If you get worse (I had shortness of breath, insomnia, night sweats, and random chest pounding, but others get debilitating fatigue or other inflammatory symptoms), you back off because it was too much. Another possibility is anxiety (feeling your heart pumping and almost passing out could be physiologically induced, it could be anxiety-induced, or it could be a feedback cycle between them!). All the above I learned at a long covid hospital which had specialists (pulmonology, cardiology, etc.) that were up to date on academic medicine. They were pretty dark, some of them, and as they say a man with a hammer sees only nails. But you sound like you seek answers, and hopefully the above gives some bread crumbs of some use.

dagorenouf 4y ago
Thanks a lot, I’m seeing a cardiologist in 2 weeks (couldn’t get an appointment sooner where I live) and will ask them for stress test and post. One thing I don’t understand though: the day before I got bad again last month, I walked 10km and even ran a few times in the same day with 0 problem. I also use to do weight training before getting sick in 2021, so could it still be exercise intolerance? As for anxiety, it’s something i only had occasionally before, and lately I’ve been feeling more relaxed as my financial situation improved. But maybe I’m missing something and this illness makes me 10x more sensitive to anxiety so even what I consider low levels become problematic.

VagueMag 4y ago

Just wondering if you're familiar with Dr. Farid Jalali and his theory Long COVID is a form of or related to Mast Cell Activation Syndrome?

dagorenouf 4y ago
I’m hanging out Reddit long haulers a lot and seen it but haven’t dug deep yet, what’s your takeaway from it?
- VagueMag 4y ago
  Have not dug into it in all that much depth either, but Jalali was one of the first and loudest proponents of theories of SARS-CoV-2 being primarily an issue of vascular (as opposed to respiratory) pathologies, and fluvoxamine as a form of treatment which, while not a cure, did wind up being shown to be somewhat effective. From the little bit I saw it seemed like maybe he was recommending aggressive use of antihistamines. I believe some of it may have been incorporated into the FLCCC IRECOVER protocol. The other thing that he seemed to believe might work is anticoagulants, but he was concerned that the doses that would need to be taken are potentially hazardous in and of themselves.
  - dagorenouf 4y ago
    thank you! I'm trying different drugs as well as diet changes one after the other to see what makes me feel better. added anti histamines to my list to try next

thepaulroman 4y ago

This sounds similar to what happened to Physics Girl from YouTube, and she has ME/CFS. Consult with your doctor and physiotherapist. Get well soon!

dagorenouf 4y ago
Thank you! Yeah it seems similar, the mitigation techniques from me/cfs folks definitely helped me. I didn’t know physics girl but checked it out and wow I feel for her. I managed to thankfully get rid of most fatigue by changing my diet + not moving out of bed so I can still work. When I couldn’t it was the worth feeling. Hope she gets better soon.

seydor 4y ago

Some advice for long covid from Mount Sinai https://www.youtube.com/watch?app=desktop&v=tFQBcu5qlmE https://www.youtube.com/watch?app=desktop&v=tFQBcu5qlmE