1. < Post-COVID Recovery & COVID-19

When to accept permanent long covid?

Posted by gregorb @gregorb, 2 days ago

Had Long Covid for 11 months. Is there still a chance it could go away or is it time to accept as permanent. Have heard give it anywhere from 1 to 2 years. Any feedback on that?

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ann728 | @ann728 | 1 day ago
In reply to @janetlbhughes "Finally feeling like my old self. In my 5th year of long COVID. Dr. Jordan Vaughn..." + (show)
@janetlbhughes

Finally feeling like my old self. In my 5th year of long COVID. Dr. Jordan Vaughn in Birmingham has a treatment that is working for me. I began the treatment in July, 2024. Check it out!

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I assume any treatment is designed for the individual pt. Can you share your treatment protocol? Thank you.

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1 reply
gregorb | @gregorb | 1 day ago
In reply to @ann728 "I assume any treatment is designed for the individual pt. Can you share your treatment protocol?..." + (show)
@ann728

I assume any treatment is designed for the individual pt. Can you share your treatment protocol? Thank you.

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As so many have stated, doctors want to treat individual symptoms. Not the disease. Not practical. Too many symtoms. None are terrible. CFS is the worst for me and am able to self treat. Won't hop on the medical merry go round and create more stress to make things worse. I have seen no treatment so far that seems helpful. At least in my case. Thanks for your reply.

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gregorb | @gregorb | 1 day ago

I am so happy for you and it's nice to hear some positive news. Good luck to yo moving forward and I will check it out. Thanks so much and also for your reply.

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gregorb | @gregorb | 1 day ago
In reply to @leo4404 "Hi, I had Covid the end of 2019, beginning of 2020. I had ( have )..." + (show)
@leo4404

Hi,
I had Covid the end of 2019, beginning of 2020. I had ( have ) long haul covid. My problem has been my Dr. s they treat my symptoms separately. No one sees the problem as just being one thing. Then there's the Dr's that say everything looks fine on your test, I'm not seeing anything. Then I doubt myself, am I crazy? The ringing in my ears that never stops, extreme fatigue. I don't go to Drs now, I have given up on even trying to see if anyone can help. When I have asked about long haul covid as being a problem, they tell me that maybe I should see if I can find someone who specializes in the long haul. I figure this is what I have to live with. I use to own a restaurant, now I can't even go into a restaurant. My business is gone, my husband has passed away. There is nothing left, unless you count long-haul covid.

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I'm so sorry for your situation. Much of it sounds so familiar. But the last part of your post is heartbreaking. Please reach out for as much support as you can find to help you through this. Best wishes and hugs.

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kentkemmerling1949 | @kentkemmerling1949 | 1 day ago

I don't want to be discouraging, but I have had Long COVID for over 5 years now and an not any better. In fact, I have never gotten to where I could walk well again. I am so dizzy and my balance doesn't allow me to walk with at least a cane and more safely a walker. But, I have heard where most people recover much faster.

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celia16 | @celia16 | 22 hours ago

I’m 19 months post covid. Some things have improved and for those I am grateful, but other things…..are the same. I try to have hope, but I’ve started considering that I must accept my new reality. I can barely envision my bitter taste resolving. I will continue to keep an open mind.

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gregorb | @gregorb | 16 hours ago
In reply to @celia16 "I’m 19 months post covid. Some things have improved and for those I am grateful, but..." + (show)
@celia16

I’m 19 months post covid. Some things have improved and for those I am grateful, but other things…..are the same. I try to have hope, but I’ve started considering that I must accept my new reality. I can barely envision my bitter taste resolving. I will continue to keep an open mind.

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Celia16.
Glad you've at least some improvement. Hopefully something to build on. Yes. Keep an open mind for new ideas. That is my direction moving forward. I'm at 11 months. Rotating symptoms of varying degrees. So much work trying to figure out what works best for me. Try to learn more every day with an open mind. So much an individual illness. Best wishes moving forward.

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margaretamada | @margaretamada | 7 hours ago
In reply to @mimilc25 "Hi there, LC Friends: I Was smacked with Covid 12/24/19. Yep, lucky me but that’s another..." + (show)
@mimilc25

Hi there, LC Friends: I Was smacked with Covid 12/24/19. Yep, lucky me but that’s another story. In terms of LC: I started having LC symptoms in March 2020. Like many on the string I had them all! Aftertwo years my doctor referred me to specialists that could take a look at everything that was bothering me (heart, digestion, memory, lungs, bronchial tubes, Micro clots, etc.) Not much was known about LC back then, however, everyone of the different specialists Said that to the best of their limited knowledge, it was all due to Covid. Mind you, I’d also had 5 years of positive Lyme Disease tests as well. So we were trying to battle both. In any case, here I am 5 1/2 years out and I still get PEM. It presents itself as total exhaustion the day after I try to live my old life! As well, I’ve had two flares of diverticulitis in the past six months and also had achilles tendon surgery a year ago. My doctors done a lot of research on Covid and turns out it affects just about everything so you never know what’s going to crop up. No matter how positive I am mentally how much I stay active, that bugger does not want to leave. Within a month or so I will be seeing a Long Covid specialist at Dartmouth. I’m not really certain what I’m looking for in terms of answers because I don’t really believe that anyone has any still at this late date, but I would like someone who is well schooled in LC.
My most recent challenge, as some of you who read it might know, is with the micro clots. Out of the blue, no matter what I’m doing, or have done my cherry red, lower legs have returned. Mind you, not Daily, but they show up for a few days go away for a few days and come back for a few days That actually stopped happening Four years ago. I have no idea what’s prompting their return.
Anyhow, sending so much love and healing energy to all of you.

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I’ve had LC since February of 2021. The PEM is what I hate the most. I can’t ever predict perfectly when too much physical effort is too much (or too much excitement) and get smacked down over and over.

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jeindc | @jeindc | 7 hours ago

I've wondered the same since so much of the research written says 1-2 years and yours, much longer than my 2 years has to be so challenging. (Mine adds symptoms - over time - and becomes more debilitating.)

I think they do not know. I use a google alert for both some of the symptoms + Long COVID or other like term and find so many medical research that differs.

At "just" 5 years of the virus (which continues to mutate and infect) and now, especially in the US with funding dollars cut, we never know enough. I see so many long covid practices within teaching hospitals closing which does us no good nor for those who are still getting sick.

For now, because some treatments work for some and not all, some activities like yours triggers another round, or some, like mine, appear out of nowhere or so it seems.

On some days I am resigned to this for the rest of my life which at now 78 (and having just ended my consulting practice because of LC) may be lessened yet, each day I try so hard to be the me I was BC - before COVID.

To us all and to those who care to support us and the doctors who are committed to finding funds to continue research, hope.

JE

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roadog66 | @roadog66 | 6 hours ago

The patient research collaborative is an organization that I give to that funds Covid research. I believe they are the ones that funded the research in Amsterdam which made headway and understanding PEM.

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