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

Wow.. I hear you! I certainly can empathize with your situation. I have been struggling for almost 4 months since my Covid infection in early December. I too have been an active person before Covid.
I have an appointment to see the only " Long Haul Covid" specialist at Scripps Clinic in San Diego in early May.
I have not been taking any supplements besides my usual vitamins and calcium because I have extreme sensitivity to new substances.
For the past 2 months I have gradually been increasing my exercise routine with some setbacks. I have learned to take things very slowly and above all, try to exercise patience. I have had many days when I have been really down and discouraged. With the help of my therapist, I have learned to take one day and one moment at a time.
Over the past 2 weeks I have noticed a higher energy level... Finally!! Now I am gradually increasing exercise and activities. I just hope this lasts! After months of sadness there is some light! It will come for all of us. Let's believe that. In the past week I have noticed more discussion of Long Covid in the media.. Finally... and that is encouraging. It sounds as if there is scientific research going on. Most recently, news about Metformin.
I know how hard this is, but perhaps we are one step closer every day.

My husband also has the exact same problems. He also was very successful and smart. Since the 2020 Covid, he cannot focus and has a hard time making complete sentences. He forgets words. The only thing we have found that helps him with alertness is Lions Mane drops and Mudwater tea (mushroom). I know it sounds crazy but we have been to numerous doctors and they have all agreed that they have heard of this concoction but have no confirmation from the post Covid research. We need a data base. Maybe this will help.

I'm sorry to read about this, because of both your situation and because I feel like I'm in the same boat. I just posted about my problems and they sound eerily similar. I'm a 45 yr old male, good life (or so I thought), wife, beautiful 8 yr old son (the worst is not being able to take care of him like I want to), nice home, plenty of freedom until these symptoms arose out of nowhere several months ago. I'm nauseous and dizzy as I right this right now. This isn't my usual brain fog, fatigue, crying spells and agoraphobia, but it's still bad.
But as far as my belief, it's kind of both, long covid which could potentially be lasting damage. I'm trying to accept it every day, not be too hard on myself, and be happy with whatever I can do. I won't stop pursuing options to help but have to remember to keep the expectations in check, I suppose. I thought I was in the clear several times when I had some good days, only to be followed up with bedridden weekends over the holidays, or sitting under the covers when my friends were out golfing.
Hang in there bud. One foot in front of the other...

I’d also like to know if any reputable group has some data-based recommendations. I find it impossible to navigate all the herbs, extracts, vitamins, supplants, roots, oils, etc. that’s before even getting into doses and what conditions all this stuff works with. I believe there is valid restorative power in eastern medicine. I just don’t know what to do with it. No offense, but sometimes the messenger of the recommendations are a bit eccentric. I don’t know what to believe or how it interacts with the medicine my neurologists recommend. Any good, reputable resources out there who isn’t peddling snake oil?

I had the covid virus in March 1922. I have been suffering with burning in my legs feet and arms every day since it has gotten better over time but at night it is terrible. If anyone else has the same symptoms, could they tell me or give me some advice on what to do

I personally think there is no excuse to allow people in any country, much less America, to get to such a stage of helplessness. Our medical industry is seriously broken, when there are no answers to Long Covid. The pharmaceutical industry, our government and the medical industry hyped the vaccines, cures and booster shots, but when it comes to potential side effects, problems ... They can't seem to run farther and faster to avoid even discussing it. This is "risk avoidance" or financial management - not medical care. This is the best reason we should move to a single payer system for our medical care rather than letting lawyers and financial advisers prescribe our non-care. Don't get me wrong - the government has a piece of this debacle also - after all WCC and Medicare cost will also be negatively affected and we will have to monitor those administrators too.

Thanks all.
I’ve been in the NIH RECOVER program since June 2022 and Northwestern University’s long Covid program since the same time. They’ve given me every neurological and other tests possible, and they give me new tests when they’re able to trial them. I have a 268 page PDF of test results from these two programs, most are neurological - memory and mental processing are my issues.
As research studies come out, I contact the researchers, whether they’re in Poland, UK, or Japan. I talk with my many neurologists about microglial synapse elimination. They ask me questions about research and about studies and long Covid. I’m just a regular guy trying to figure stuff out. I’m a patient and have know other medical training.
The best I’ve done is got prescribed amantadine, which helps neurons make connections after brain illness and disease- Alzheimer’s, Parkinson’s, dementia, MS, TBI. One of my neurologists at Northwestern thought to prescribe it off-label (meaning the FDA hasn’t specified its usage for brain fog), it helped. After a week people said I was like a whole new guy in appearance and personality and thinking, like the old me. It faded after four months, they doubled the dose so now I’m at a good solid level for a Parkinson’s patient. The next dosage increase will max me out.
A couple months ago a neurologist in one of my programs who does testing and research suggested I ask my psychiatrist to prescribe adderall. One pill buys me about 4 hours of better focus and memory retention. I take one before work and midday. It helps a bit, but I struggle if I don’t sleep well (i was given meds for that too) or don’t eat well. Sometimes I can’t remember most of what happened earlier in the day, but I don’t know or remember what I may have done to make it worse.
So I tend now to doubt my own memories, write a lot down, keep quieter at work so I don’t say something “unfiltered” or just obviously wrong.
I have NIH again in April and Northwestern in May. I expect to get more tests, which is great (i can only imagine the costs- and they pay to to participate!), but my only expectation is to provide data on me to help the cause. They tell me they’re now working on tests to validate the tests for running trials, which are tests for medical solutions.
I’m just kinda on hold and adapting to it and waiting around for something.
Pfizer, Moderna, etc made a lot on vaccines. Read their annual reports, which also tell shareholders they’re looking for new sources of revenue since vaccine sales are down.
I hope there’s money to be made in long Covid treatment for them. A lot of my early tests were to establish the tests and symptoms to formally classify long Covid as a real disease with a number assigned to it so doctors can diagnose and bill insurance companies against that number. Since it’s officially “real” and all these tests are being developed to do clinical studies, and the economic impacts of long Covid are becoming globally known, pharma will have financial incentive to invest in real solutions for this real disease/condition/syndrome, or whatever it is. That’s where my hope is.

I have also had some burning sensations , mostly in my hands at night, especially when there has been some pressure on them. Along with the other symptoms, these are gradually subsiding. I know it has become a cliche, but hang in there! It should get better.

You have described what so many of us feel like. Thank you for sharing your experience with covid. I do not have answers I just know this is very real and hopefully doctors will stop marginalizing it. I hope you feel better and sending blessings to you.

I dread to think the damage might be permanent. I’m staying hopeful at the moment reading up on a drug called BC007 which is undergoing drug trials sponsored by French government. Google it. I’ve kept thinking this syndrome acts like an autoimmune disease but usual tests for autoimmune diseases come back negative. But the theory behind BC007 is that it neutralizes autoimmune antibodies.