What is long covid?

Posted by spittendrigh @spittendrigh, Sep 6, 2023

1) an auto-immune respose
2) persistant low-level virus
3) or what?

I heard about a happening soon or now conference in Texas. Austin? I need to track that down and follow.

I've had long covid since March 2020. That's when I first got the virus anyway. I felt almost cured in early May this year. Then the Omicron booster sent me into worse-than-ever relapse, within 72 hours after the shot.

Then, a week ago, I started to get dramatically worse. Something was going on beyond just long covid. I had a covid test, and tested positive for tne virus. I started taking Paxlovid and immediately improved. This is day three of Paxlovid. I am not quite as chipper as I was in early May (right before the Omicron disaster). But close.

My intuition is (not qutte) science. However, the dramatic, almost instantaneous improvement made by Paxlovid makes me suspect "lingering low-level virus" is a more likely Long Covid cause than anything to do with an auto-immune response.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I can tell you this - No one doctor knows! I've had all the long covid symptoms since May of 2022. they came on suddenly after my second booster shot (Within 7 days) and have remained for the last 16 months. My most painful symptom was intense pain in my replaced right hip (1995) that had to have a reconstruction in 2009 due to a leg-length discrepancy - dorsiflexion problem from an ankle injury in 2000. My first thought was Covid had infected the mechanical hip joint and I asked my primary care physician for a MRI to check. His 1st response was it was in my head - it would go away in 4-6 weeks, later he relented and did an x-ray and an osteoporosis scan and alerted me that I didn't have osteoporosis even though I was 76 years old. The pain in my hip was more sever now and was also in my neck, back, shoulders and both arms and hands with ever increasing pain. His opinion was that it would go away soon but refferred me to a rheumatologist who thought it was an auto immune problem. My yearly physical was last month and the PCP proclaimed that my numbers never looked better. I responded that I never felt worse - I couldn't open a zip lock baggie or lift a gallon of milk and had never experienced worse pain in my life and it was continually getting worse by the day. Since I had mentioned the pain, tingling and lack of strength was in both arms and hands, he asked if I wanted a neck X-ray as those were the symptoms of neck problems. I responded yes and we did the x-ray on Thursday and the following night, Friday at 10:00 Pm he e-mailed me that his office was arranging a full spine MRI. The earlier x-ray had revealed damage to four disc and once the MRI was complete I had damage to 13 of the 22 disc in my back as well as the nerves entering and exiting those joints. Was it an autoimmune response attacking the nerves and connective tissue or was it muscleltetal alignment problem? Who knows - not my doctors - their recommendation immediate back surgery on 6 joints. They don't want to know what, why or the future damage, particularly if its related to covid.

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Yes! 1, 2, and 3 are all correct. A lot of long covid symptoms have to do with inflammation, and COVID-19, like other viruses does seem to persist in the body. The varicella virus causes chicken pox, and after recovering from chicken pox, the varicella virus can go dormant but persist in the body, causing shingles to be activated years later by stress. Also, the Epstein-Barr Virus appears to cause Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. COVID and other viruses can go dormant and persist in the body, and cause issues later on. The Covid community is learning a lot from the ME/CFS community - some of the symptoms are similar. Stress creates inflammation and seems to be a trigger for all the various symptoms that make up "long covid". Any underlying issues are made worse, and new issues can appear gradually or suddenly. Lastly there is so much we don't know. All of us have probably done a ton of research in trying to figure out what is going on with us, and our symptoms could be completely different than someone else with LC. I think the COVID patient community may know more about Covid than some of the specialists we go to for help, simply because this is still relatively new. The range of LC symptoms is quite broad and there seems to be no way to predict who will get what symptoms, or what (if any) symptoms may come next. Long covid symptoms may be completely different than initial infection symptoms. Someday we will know a lot more about Covid, but for now we are all still learning.

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Agree, agree, agree with all of the above posters. It would be helpful if doctors would listen to us. WE are the experts. And yes, better informed than most doctors because we are dealing with this 24/7 and researching constantly. People tell me to not “stay in my disease”. I’m not sure what that means? I’m IN my disease and as much as I try to distract myself, it’s always there. My issues are with distorted perception. Loss of hearing, tinnitus, hyperacusis, blurry vision. ..Very hard to ever leave behind. I am grateful that pain has been minimal for me.
I continue to search for the key that may help me. I’m sixteen months in and it feels like an eternity.
Good luck to all.

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i agree, there are so many symptoms with this long covid, crazy,...i also just hurt all over and i'm curious if anyone else has had a bone density scan, my bone density was always great until covid, now it is thinning, i read somewhere over seas (wish i had saved the article) that this was happening in long covid persons...my doctor was even surprised by the change....has anyone else had any change in their bones? as i have said before i have sooo many different symptoms now..i never had any of them before covid, i was in great health and felt great...

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The US Government is now recognizing and researching long covid. https://www.covid.gov/longcovid
The definition of long covid is accurate and troubling. It can get worse over time. New symptoms can occur. Life threatening events- like cancer, sepsis, etc/
“may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsen over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.“

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@beebee000

i agree, there are so many symptoms with this long covid, crazy,...i also just hurt all over and i'm curious if anyone else has had a bone density scan, my bone density was always great until covid, now it is thinning, i read somewhere over seas (wish i had saved the article) that this was happening in long covid persons...my doctor was even surprised by the change....has anyone else had any change in their bones? as i have said before i have sooo many different symptoms now..i never had any of them before covid, i was in great health and felt great...

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Long covid does cause osteoporosis. Its cause the mcp-1 cytokine is high. It causes so much damage- including many kinds of
Cancer. Google it…
I have a bone scan scheduled for next week.

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Hi to all. Just wanted to thank so much for the succinct yet right on descriptions of this long covid journey that gives hope and community healing for all!🌈

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This is NOT medical advice- to
Find out what is really going on with us- people with long covid- we need to have specialized tests. For example-
Cytokine panel
Connective tissue diseases cascade
Immunoglobulins lab tests
Monoclonal gammopathy diagnostic
A basic cbc and ekg are not enough.
The sarscov2 spike protein can and does stay in our bodies, causing our immune systems to go haywire.
Many scientists think of sarscov2 like HIV vs a typical virus.
This article explains what cytokines in overdrive do to our bodies.
https://www.sciencedirect.com/science/article/pii/S1567576921002344

Shared files

Cytokines (Cytokines-.pdf)

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@theressa

The US Government is now recognizing and researching long covid. https://www.covid.gov/longcovid
The definition of long covid is accurate and troubling. It can get worse over time. New symptoms can occur. Life threatening events- like cancer, sepsis, etc/
“may be multisystemic; and may present with a relapsing–remitting pattern and progression or worsen over time, with the possibility of severe and life-threatening events even months or years after infection. Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes.“

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I'm sorry to hear the government is involved in long covid--generally they botch it up and make it either a government job site or a political entity.
Where is the Medical AMA ?/ Absent without leave!
they should give Gov't grants to university's for research ---at least our young aspiring youth would become interested--

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