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

Clinicaltrials.gov has all clinical studies, if they’re recruiting, and can enroll you in a study.
https://recovercovid.org/ is the national program led by the NIH that I’m in.
I’m in Chicago so I looked at the top university hospitals. Northwestern had a Covid program I joined in May 2022. I’ve had every test possible done on me, even tests not fda approved.

I’ve been on anti-depression/anxiety meds for years. I don’t know if they help weather the storm or not. I’ve been more depressed with the consistent disappointment and shame of now being to do anything at my normal levels. I’ve been seeing a neuropsychologist to help me navigate a world while being mentally impaired.

It’s really hard to get a team together where different disciplines get it. I have neurologists, a pneumologist, psychiatrist, neuropsychologist, cardiologist, and other clinical study doctors. They’re all affiliated with the same university and its Covid program. But I had to assemble the team and coordinate data sharing and communication. It takes effort when some doctors have limited Covid understanding.

Thanks. I have no opinion on long Covid and vaccines. I took the first one and first booster yet got Covid. No doctor could tell me if another round of vaccinations is indicated for someone with long Covid, so I decided not to bother. Maybe there’s more research now. I don’t get into vaccine debates because I’m not an expert. I’m making my own personal decisions.

I was close with my doctors. I had 100 appointments in 20 months for tests, cognitive treatment, and more. I listened to docs and followed recommendations on diet and exercise. I am on anti-depressants and see a psychiatrist and therapist- my life has had a thick layer of frustration and stress knowing I suck at everything I used to do well. And I talk to people like this. We are not a,one.

I didn’t even knew there was such a thing. It was early days of Covid and I just called the major Chicago hospitals and medical universities to see if they had anything. They’ll pay me $20 to come and and get very sophisticated tests, some being approved by the FDA by testing on me and other volunteers. Works for me

I empathize with all you said. My doctor prescribed neurological medicine to help with memory and processing lots of stimuli, like in a crowd. And medicine to focus. You may ask if paxlovid is right for you. It completely transformed me. If you go to clinicaltrials.gov, you’ll see lots of long covid research is getting funded and a lot of research and learning is underway. That gives me hope.

My long Covid speech/cognitive therapist told me I can’t try to rewind and be the old me. I can create new abilities and ways to get back to where I was, perhaps even better, like people who lose a limb then become great athletes.
My daughter has pots and is in a clinical program. Her stomach issues are terrible but meds, diet, and exercise provide some relief. For my long Covid, pacing is really important- how I manage my energy levels, sleep times, activities. I know not to schedule important business meetings at the day because I’m sometimes too exhausted to remember how to use my computer or speak without slurring. Yes, we all have value. If we keep our eyes and hearts open, there’s endless parts of the day to enjoy, like a squirrel running in the snow and leaving cool footprints, then my dog sniffing the prints.

Hello. The neurologist first put me on a dementia medication to try slow the destruction of synapse connections in the brain. I did a couple of MRIs and no structural defects were found. I did a 300 question test for psych analysis and it showed I as depressed. I did an eight hour session where I’m matching colors, repeating sentences, and other IQ-type claims. I spent a week in the hospital with 28 electrodes on my scalp and a camera on me at all times - the tried sleep deprivation, flashing lights, and more to see if they could induce a seizure. I had classic blood markers off that are consistent with long Covid. The cognitive ability stuff can be misleading since it measures you versus the average. I’ve done it before and qualified for Mensa and am very successful. The test comes back with me at average or slightly average, but I know I could have done better.
I as told to get expensive software for home to retrain my brain and measure progress. Now that I’m feeling better, I can blow the roof off those tests. I may crash in a couple of weeks. That’s why I bought an Apple Watch when this started. I can call for help and it could walk me to my car, which I’ve lost in the past. Some days are really good, some are a struggle, but I’m seeing some light ahead after a long journey and nothings going to stop me.

I understand you. I feel the same way, I am not the same as I was before 2020.
Long covid is just a new auto immune disease made by an evil virus that was accidently put in the world. There are millions of us suffering. There is no cure. We have all the symptoms of all those neurological diseases and we can’t do anything about it. Steroids help but create other issues if used long term.
It has cost me so much money and I get no financial relief even from work when I can work.
This is my new normal. It’s hard to accept and it’s not my choice but I have no choice either.