5 ms·

Can you provide links regarding post covid symptoms

by moneywoes 6y ago

benjaminwootton 6y ago
I would love to see the hundreds of support groups. This is an urban myth about the long term damage.
- ljf 6y ago
  I can agree that there is very very limited research on the long term impacts (since this is so new) - but thousands of people are struggling to recover from this - often people who were not dangerously ill with covid to start with. The 'long haulers' covid group my wife is on has had people uncovering heart scarring, nerve damage and other issues when they have been lucky enough to find a supportive doctor. Most are currently not seeing specialists as they cannot get referrals or the waiting lists are long. I have no idea if there are 'hundreds' of support groups - my wife is on a couple that largest of which has approaching 10000 members. Every time I post about her progress to Facebook I find more friends or friends of friends who know of people that haven't yet made a connection to a group of or who are only newly considering themselves 'long term ill'. Given what we know now, and the large wave of cases, there are many more people who will be suffering long term symptoms in the months to come. I really hope there is no long term damage - but I think you have to admit it is too early to say that with any confidence. The impacts or Ebola and SARs are well understood, so I'm not sure why people find it so hard to believe in the issues covid causes. Article: ‘I feel helpless’: three people on their grueling Covid-19 recoveries https://www.theguardian.com/us-news/2020/jul/20/coronavirus-side-effects-long-term-recovery-symptoms?CMP=Share_AndroidApp_Notepad https://www.theguardian.com/us-news/2020/jul/20/coronavirus-...
ljf 6y ago
‘I feel helpless’: three people on their grueling Covid-19 recoveries https://www.theguardian.com/us-news/2020/jul/20/coronavirus-side-effects-long-term-recovery-symptoms?CMP=Share_AndroidApp_Notepad https://www.theguardian.com/us-news/2020/jul/20/coronavirus-...
- partyboat1586 6y ago
  Hopefully this will trigger people to take CFS seriously, resulting from COVID or otherwise.
  - ljf 6y ago
    I really hope so. My wife is currently about 120 days into her post covid issues. Covid itself wasn't too bad for her but the symptoms she's had since it went have been far far worse, and for a long time the doctors just tried to fob her off. She's a normally active and healthy person who right now can't play with or even read a book to our kids. She cannot do anything at all which is incredibly depressing for her. That said lately she's felt some very gradual improvement, but from the group she's on she knows not to push it - it might be 4 or more months until things are more normal - who knows.
    - partyboat1586 6y ago
      I'm sorry to hear about your wife, that sounds awful. I also had post COVID issues, I couldn't get out of bed for a month and was very low energy for three. The doctors did nothing for me but luckily I have now recovered on my own. I tried eating lots of vegetables and lean meat (as per official nutritional recommendations) and it made me worse. I remember building up the strength every day just to chop the vegetables, eat and go back to bed. When I told my Doctor they dismissed it. I recovered on a diet of fatty red meat (1-2lb per day), milk, cream, eggs and fruit. The diet could be a timing coincidence but on the other hand maybe my Grandmother was on to something feeding me beef stew when I was ill as a kid. There will be a law suit over how CFS patients are currently treated: https://www.virology.ws/2020/07/15/trial-by-error-nice-on-exercise-and-post-covid-syndrome/ https://www.virology.ws/2020/07/15/trial-by-error-nice-on-ex... You might want to follow it. I will be.
      - ljf 6y ago
        Thanks, very interesting. She's been avoiding fats has she's had both reflux and is trying to eat an anti inflammatory diet. Will see if she fancies a change of tactics.
tezzer 6y ago
Call this anecdata, but here's part of a weekly update from a friend, ~45yo male, and his post-covid struggle: “I am trying to keep my weekly covid journal going. We are still in about month 4 post infection. Some good news is my breathing is slightly better. When everything is bad all small improvements are noticed. Could be from OTC blood thinners or that my lungs are getting better. Still have a super hard time breathing, but it is just a bit less difficult. I am also in a near constant state of fatigue, but am unable to easily sleep because of the other symptoms. My MRI revealed no vessel or tissue damage to my brain from the stroke, so maybe not a stroke or just not sever enough to cause damage. It did reveal a small cyst on the brain, but that seems to be common in covid recovery patients and no one knows why yet. The stroke like symptoms maybe related more to the hypoxia and not a stroke. I see a nuerologist this week and they will decide the next steps. The symptoms are still there though - dizzy, off balance, difficulty with sentence formation, difficulty getting facts from brain to mouth or hands to type, memory issues. Super frustrating. My cardiologist has sent me for a new test that takes highly detailed xrays of the heart. After deciding what/how much damage is in my heart valve they will decide the next course of treatment. Other than the damage, he says my heart is healthy. Passed my breathing test, so capacity is OK and volume/flow is good. The worry and science now is saying the breathing troubles I am experiencing may be related to tons of micro-clots in the lungs. They have been discovering these during autopsy of covid deceased (hopefully deceased) patients. My next steps of healthcare relate to all these specialist working together. I can not start blood thinners for my stroke prevention until I am sure I will not need heart surgery. I can not go down the path of heart surgery until there were sure I can both breath effectively and not have a stroke. I am fortunate for good doctors that are at the front edge of treatment for covid patients. Some of the care is "we just have to wait", that is OK but frustrating because in the mean time I am at the mercy of me neighbors to do the right things and not re-infect me and I have to stay socially isolated. The latest science is showing that antibodies are not retained in over 85-90% of cases of infection, meaning there is no natural immunity. This includes me, I showed no antibody after 10 weeks. This is worrisome since I am sure I would NOT be able to survive another round, since I barely survived the first one. "
- rurp 6y ago
  Thank you for sharing this. The non-fatal COVID experiences have been grossly underreported, IMO, given how prevalent and severe they are. The thought of dealing with permanent lung and brain damage for the rest of my life is pretty terrifying, and seems disturbingly common even in age groups with a low fatality rate.

Can you provide links regarding post covid symptoms

benjaminwootton 6y ago

I would love to see the hundreds of support groups. This is an urban myth about the long term damage.

ljf 6y ago
I can agree that there is very very limited research on the long term impacts (since this is so new) - but thousands of people are struggling to recover from this - often people who were not dangerously ill with covid to start with. The 'long haulers' covid group my wife is on has had people uncovering heart scarring, nerve damage and other issues when they have been lucky enough to find a supportive doctor. Most are currently not seeing specialists as they cannot get referrals or the waiting lists are long. I have no idea if there are 'hundreds' of support groups - my wife is on a couple that largest of which has approaching 10000 members. Every time I post about her progress to Facebook I find more friends or friends of friends who know of people that haven't yet made a connection to a group of or who are only newly considering themselves 'long term ill'. Given what we know now, and the large wave of cases, there are many more people who will be suffering long term symptoms in the months to come. I really hope there is no long term damage - but I think you have to admit it is too early to say that with any confidence. The impacts or Ebola and SARs are well understood, so I'm not sure why people find it so hard to believe in the issues covid causes. Article: ‘I feel helpless’: three people on their grueling Covid-19 recoveries https://www.theguardian.com/us-news/2020/jul/20/coronavirus-side-effects-long-term-recovery-symptoms?CMP=Share_AndroidApp_Notepad https://www.theguardian.com/us-news/2020/jul/20/coronavirus-...

ljf 6y ago

‘I feel helpless’: three people on their grueling Covid-19 recoveries https://www.theguardian.com/us-news/2020/jul/20/coronavirus-side-effects-long-term-recovery-symptoms?CMP=Share_AndroidApp_Notepad https://www.theguardian.com/us-news/2020/jul/20/coronavirus-...

partyboat1586 6y ago
Hopefully this will trigger people to take CFS seriously, resulting from COVID or otherwise.
- ljf 6y ago
  I really hope so. My wife is currently about 120 days into her post covid issues. Covid itself wasn't too bad for her but the symptoms she's had since it went have been far far worse, and for a long time the doctors just tried to fob her off. She's a normally active and healthy person who right now can't play with or even read a book to our kids. She cannot do anything at all which is incredibly depressing for her. That said lately she's felt some very gradual improvement, but from the group she's on she knows not to push it - it might be 4 or more months until things are more normal - who knows.
  - partyboat1586 6y ago
    I'm sorry to hear about your wife, that sounds awful. I also had post COVID issues, I couldn't get out of bed for a month and was very low energy for three. The doctors did nothing for me but luckily I have now recovered on my own. I tried eating lots of vegetables and lean meat (as per official nutritional recommendations) and it made me worse. I remember building up the strength every day just to chop the vegetables, eat and go back to bed. When I told my Doctor they dismissed it. I recovered on a diet of fatty red meat (1-2lb per day), milk, cream, eggs and fruit. The diet could be a timing coincidence but on the other hand maybe my Grandmother was on to something feeding me beef stew when I was ill as a kid. There will be a law suit over how CFS patients are currently treated: https://www.virology.ws/2020/07/15/trial-by-error-nice-on-exercise-and-post-covid-syndrome/ https://www.virology.ws/2020/07/15/trial-by-error-nice-on-ex... You might want to follow it. I will be.
    - ljf 6y ago
      Thanks, very interesting. She's been avoiding fats has she's had both reflux and is trying to eat an anti inflammatory diet. Will see if she fancies a change of tactics.

tezzer 6y ago

Call this anecdata, but here's part of a weekly update from a friend, ~45yo male, and his post-covid struggle: “I am trying to keep my weekly covid journal going. We are still in about month 4 post infection. Some good news is my breathing is slightly better. When everything is bad all small improvements are noticed. Could be from OTC blood thinners or that my lungs are getting better. Still have a super hard time breathing, but it is just a bit less difficult. I am also in a near constant state of fatigue, but am unable to easily sleep because of the other symptoms. My MRI revealed no vessel or tissue damage to my brain from the stroke, so maybe not a stroke or just not sever enough to cause damage. It did reveal a small cyst on the brain, but that seems to be common in covid recovery patients and no one knows why yet. The stroke like symptoms maybe related more to the hypoxia and not a stroke. I see a nuerologist this week and they will decide the next steps. The symptoms are still there though - dizzy, off balance, difficulty with sentence formation, difficulty getting facts from brain to mouth or hands to type, memory issues. Super frustrating. My cardiologist has sent me for a new test that takes highly detailed xrays of the heart. After deciding what/how much damage is in my heart valve they will decide the next course of treatment. Other than the damage, he says my heart is healthy. Passed my breathing test, so capacity is OK and volume/flow is good. The worry and science now is saying the breathing troubles I am experiencing may be related to tons of micro-clots in the lungs. They have been discovering these during autopsy of covid deceased (hopefully deceased) patients. My next steps of healthcare relate to all these specialist working together. I can not start blood thinners for my stroke prevention until I am sure I will not need heart surgery. I can not go down the path of heart surgery until there were sure I can both breath effectively and not have a stroke. I am fortunate for good doctors that are at the front edge of treatment for covid patients. Some of the care is "we just have to wait", that is OK but frustrating because in the mean time I am at the mercy of me neighbors to do the right things and not re-infect me and I have to stay socially isolated. The latest science is showing that antibodies are not retained in over 85-90% of cases of infection, meaning there is no natural immunity. This includes me, I showed no antibody after 10 weeks. This is worrisome since I am sure I would NOT be able to survive another round, since I barely survived the first one. "

rurp 6y ago
Thank you for sharing this. The non-fatal COVID experiences have been grossly underreported, IMO, given how prevalent and severe they are. The thought of dealing with permanent lung and brain damage for the rest of my life is pretty terrifying, and seems disturbingly common even in age groups with a low fatality rate.