1. < Post-COVID Recovery & COVID-19

Anyone think that it’s no longer long Covid? just permanent damage?

Posted by ericy210 @ericy210, Mar 26, 2023

It’s been 10 months since I was a happy, successful, talented businessman and family guy with a nice suburban life.
Now I have trouble with basic memory and processing.
I’m in a couple of clinical long Covid programs, had tons of tests, and am on dementia meds and adderall to repair neural connections and help me focus at work. I’m tired of all the neurologists and endless testing.
I don’t even know if it’s meaningful to say I have long Covid. I’m just screwed up, like someone in a car accident who will always limp or is missing an arm or is paralyzed.
It seems I’m left with “managing the symptoms” until brain fog, dementia, Parkinson’s, traumatic brain injury, MS, and other related brain ailments are magically cured.
I’m trying to accept I’m a new guy now. I’m stuck trying to pretend I am the pre-Covid guy and just being a blurred xerox copy of myself.

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

ericy210 | @ericy210 | Jan 19, 2024
In reply to @sarahm73 "Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid..." + (show)
@sarahm73

Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid symptoms aren't something in that realm?
I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed the lupus anticoagulant antibody and had an event in October 2021 (acute DVT in right thigh and saddlebag PE). I had Covid in Jan 2021 and then was vaccinated April/May 2021 with Moderna. Extensive bloodwork and genetic testing found that my APS developed due to either Covid or the vaccine, they can't single out which, but derived from infection and not genetics. I am still on blood thinners due to the APS. In late 2022 I started experiencing intense/debilitating muscle/joint pain, brain fog, tingling sensations, etc. and was diagnosed in May 2023 with Sjogren's syndrome. Again, linked back to Covid/vaccine. I am now on a prescriptions that have immensely helped give me a sense of normalcy, but I went from great health to a complete shift in 2021.
I had to advocate for myself in getting a Sjogren's diagnosis because none of my doctors were connecting the dots, but I knew my pain was extreme and spoke to something more going on. I pushed for blood tests and found a rheumatologist through recommendation from my hematologist. I never tested positive for ANA, but my inflammation tests I asked for were off the charts before I saw my rheumatologist and got a diagnosis through antibody testing. Worth a shot if you haven't explored this avenue.
I feel for you and know the struggle to find answers, living in a body that doesn't feel like your own anymore. So thankful to have found some answers, and still uncovering more. Hang in there!

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I salute your efforts. Sometimes in life you just have to figure out how to do something yourself without waiting for others. Or find people in a similar position and take on the world together.
As long Covid becomes more known and pharma companies continue getting FDA approval in the long process of drug approval, more solutions will come. There’s a lot of money to be made by who gets into the market first, like those new weight loss drugs.

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ericy210 | @ericy210 | Jan 19, 2024
In reply to @joanma "It’s been 19 months for me and I’m improving slowly. I wonder if this is as..." + (show)
@joanma

It’s been 19 months for me and I’m improving slowly. I wonder if this is as good as it gets, too, but I have got to believe a cure will come. I take regular tests, supplements, and pace my day. I’m back able to write 3-4 hours a day — which is miraculous. I also have honed the capacity to focus on priorities, say no, and not sweat the little stuff. Stay strong. We’ll beat this garbage!!!

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“ have honed the capacity to focus on priorities, say no, and not sweat the little stuff.” Is good life advice for anyone!

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katey122 | @katey122 | Jan 20, 2024

I understand. Its been a year for me and I think its time for me to accept I will never be the me I was before Covid.

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katey122 | @katey122 | Jan 20, 2024
In reply to @sarahm73 "Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid..." + (show)
@sarahm73

Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid symptoms aren't something in that realm?
I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed the lupus anticoagulant antibody and had an event in October 2021 (acute DVT in right thigh and saddlebag PE). I had Covid in Jan 2021 and then was vaccinated April/May 2021 with Moderna. Extensive bloodwork and genetic testing found that my APS developed due to either Covid or the vaccine, they can't single out which, but derived from infection and not genetics. I am still on blood thinners due to the APS. In late 2022 I started experiencing intense/debilitating muscle/joint pain, brain fog, tingling sensations, etc. and was diagnosed in May 2023 with Sjogren's syndrome. Again, linked back to Covid/vaccine. I am now on a prescriptions that have immensely helped give me a sense of normalcy, but I went from great health to a complete shift in 2021.
I had to advocate for myself in getting a Sjogren's diagnosis because none of my doctors were connecting the dots, but I knew my pain was extreme and spoke to something more going on. I pushed for blood tests and found a rheumatologist through recommendation from my hematologist. I never tested positive for ANA, but my inflammation tests I asked for were off the charts before I saw my rheumatologist and got a diagnosis through antibody testing. Worth a shot if you haven't explored this avenue.
I feel for you and know the struggle to find answers, living in a body that doesn't feel like your own anymore. So thankful to have found some answers, and still uncovering more. Hang in there!

Jump to this post

Sounds just like me. I am pretty sure the vaccine started this and it snowballed. I now am a bundle of auto immune diseases

REPLY
1 reply
dloos | @dloos | Jan 20, 2024
In reply to @katey122 "Sounds just like me. I am pretty sure the vaccine started this and it snowballed. I..." + (show)
@katey122

Sounds just like me. I am pretty sure the vaccine started this and it snowballed. I now am a bundle of auto immune diseases

Jump to this post

Yes, the inability to get help quickly allows one thing to lead to another.
And then we are told it is anxiety and depression! Yes, NOW that is part of it. After two years of seeking nonexistent help.

REPLY
1 reply
gordy6898p | @gordy6898p | Jan 20, 2024
In reply to @sarahm73 "Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid..." + (show)
@sarahm73

Have you explored autoimmune conditions (antibody tests) through a rheumatologist to make sure your long Covid symptoms aren't something in that realm?
I developed several autoimmune conditions from Covid/vaccine. It started with antiphospholipid syndrome (clotting disorder). I developed the lupus anticoagulant antibody and had an event in October 2021 (acute DVT in right thigh and saddlebag PE). I had Covid in Jan 2021 and then was vaccinated April/May 2021 with Moderna. Extensive bloodwork and genetic testing found that my APS developed due to either Covid or the vaccine, they can't single out which, but derived from infection and not genetics. I am still on blood thinners due to the APS. In late 2022 I started experiencing intense/debilitating muscle/joint pain, brain fog, tingling sensations, etc. and was diagnosed in May 2023 with Sjogren's syndrome. Again, linked back to Covid/vaccine. I am now on a prescriptions that have immensely helped give me a sense of normalcy, but I went from great health to a complete shift in 2021.
I had to advocate for myself in getting a Sjogren's diagnosis because none of my doctors were connecting the dots, but I knew my pain was extreme and spoke to something more going on. I pushed for blood tests and found a rheumatologist through recommendation from my hematologist. I never tested positive for ANA, but my inflammation tests I asked for were off the charts before I saw my rheumatologist and got a diagnosis through antibody testing. Worth a shot if you haven't explored this avenue.
I feel for you and know the struggle to find answers, living in a body that doesn't feel like your own anymore. So thankful to have found some answers, and still uncovering more. Hang in there!

Jump to this post

I've had Covid for over a year, but the symptoms have been mild. Mainly loss of taste and smell

Since symptoms started appearing shortly after the vaccine, I also question whether the vaccine was the cause.

Every time I have an appointment at the VA hospital in Madison, Wisconsin they ask the same question "Would you like to have your Covid booster shot today?"

My reply is always the same "Thanks, but not today. I'm still undecided."

REPLY
beachbum | @arichards3 | Jan 21, 2024
In reply to @dloos "Yes, the inability to get help quickly allows one thing to lead to another. And then..." + (show)
@dloos

Yes, the inability to get help quickly allows one thing to lead to another.
And then we are told it is anxiety and depression! Yes, NOW that is part of it. After two years of seeking nonexistent help.

Jump to this post

@dloos With respect, there is help. I worked through every speciality in my home area beginning in January '22 and stumbled into a couple of medical professionals who knew and cared just enough to start me on some treatments of supplements and vagus nerve therapy and then helped me to be accepted to Mayo Clinic Rochester. I am 67 and on Medicare and my cost to date is $300ish not including my travel to get to Minnesota. I fully implemented my Mayo plan in September '23 and today I feel better, not back to 100%, but better. There are Mayo sites in Rochester, Jacksonville FL, and Arizona. There may also be other ways to access Mayo. As Jimmy Valvano famously said "Don't give up, don't ever give up".

REPLY
1 reply
dloos | @dloos | Jan 21, 2024
In reply to @arichards3 "@dloos With respect, there is help. I worked through every speciality in my home area beginning..." + (show)
@arichards3

@dloos With respect, there is help. I worked through every speciality in my home area beginning in January '22 and stumbled into a couple of medical professionals who knew and cared just enough to start me on some treatments of supplements and vagus nerve therapy and then helped me to be accepted to Mayo Clinic Rochester. I am 67 and on Medicare and my cost to date is $300ish not including my travel to get to Minnesota. I fully implemented my Mayo plan in September '23 and today I feel better, not back to 100%, but better. There are Mayo sites in Rochester, Jacksonville FL, and Arizona. There may also be other ways to access Mayo. As Jimmy Valvano famously said "Don't give up, don't ever give up".

Jump to this post

I’m very glad you are feeling better.
With respect..every individual has a different experience. I too, have “stumbled on” doctors and professionals of different sorts who wanted to help. The tools they had are not correct for what many, many of us are experiencing. I have days I have hope, and days I feel like giving up. The search for help can become difficult, and even impossible for some people who are too ill to keep up the fight. It should not be this hard. There should not be this much suffering.
Again, I am very glad you are doing better.
But it is insulting to imply that perhaps other people are not trying hard enough. I have been to hundreds (yes, hundreds, not a typo) of appointments over the last two years. Many people would never be able to do that. I do not fault them for “giving up”.

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