How are the super long-haulers doing 3 to 4 years out?

I'm starting year three and have finally realized most doctors neither have the time, inclination nor patience to tackle this disease. Every time I visit my Primary Care Physician, PCP he tells me my numbers are great and I tell him I feel like I'm quickly dying and I look at him and all I see is that beagle dog toy I had in the back of my 57 Ford with its head bobbing up and down acknowledging the obligatory "yes" with no conviction - just like the beagle toy.
The Medical industry is just too specialized and uninclined to try to solve such a complex issue that affects so much of one's body and life. Even I know it's a neurological - immune system disease and the industry has a piss poor record on treating - curing such so we shouldn't expect much from them (doctors) but please stop telling me their goal is to eliminate all the other diseases to determine what I don't have and then they can certify I might have something called Long Covid. I just wish I could give them a week's experience in my body.

I’m in year three and although I push myself to be involved in things, I’m always fatigued, have head aches, and although I thought the course of LDN I’ve been on for 6 months finally stopped the head rumblings, they’re back. They’re not as frequent but started up again. After my third bout of Covid I experienced acute nausea especially in the mornings. It stopped but recently returned.
To say it’s frustrating is an understatement. I’m continuing the LDN because I have gotten some relief from it. I am also very susceptible to viruses now. Last year I had 6 viral episodes, Has anyone else had a similar experience with LDN? I’m sticking with it and hoping for better results going forward. Good luck to all suffering.

I am also on LDN therapy. It seems to be very minor, if any help to me. I am now in my third month and wonder how long to continue. My Integrative Medicine Primary doctor seems to think three months is long enough to know if it will help. I wonder if continuing might be a good idea. He will prescribe for longer if I request.
Thoughts on that?

Amen to that. If doctors could really know what we experience they wouldn't sit there and tell us our test results say we are healthy!
If I am healthy, I am sentenced to a long life of torture! Each day is a challenge to get through.
My test results indicate I am a very healthy person. I am NOT. They are testing for the wrong things!

The doctor who prescribed LDN to me is a pulmonologist who was on the front lines in the early days of Covid. He works with other docs, prescribing LDN for many other illnesses as well, including supplementing for cancer therapies and gastrointestinal diseases. He has found it very beneficial and has been prescribing it for many years- prior to Covid. He believes you have to give it 6 months. I take 3mgs and it can be increased to 4.5 mgs if not seeing great results, which I’m considering . It’s used in long covid only for neurological symptoms.

I was seeing good results with head noises, and headaches, though fatigue still comes in
waves. I plan to stay on it indefinitely as it has helped some, can’t hurt, and is inexpensive.

I hope this is helpful.

Thank you. I think I will continue for the six months suggested.
Good luck to you.

Thank you. To you as well.

I (35F) also got it in October 2021 and am in just about the exact same place as you are. I've stopped taking almost all of my supplements (I was taking 30+ in the AM and 30+ in the PM), stopped going to most of my doctors, and am radically trying to find joy / comfort / peace anywhere I possibly can. I don't know if this is my long-term solution, but I cannot do this anymore. This disease stole my life, I'll never be able to articulate all of the ways this shattered everything about me, and I am DONE. Now I only want to find myself again and redefine myself without this soul-sucking, dream-crushing, life-stealing evil. And I have to believe it is possible, so that's what I'm doing. Laugh as much as possible, say no to anything that brings you negativity if you don't absolutely *have* to do it, say yes to indulgences, refuse to participate in anything that doesn't serve you, search for ANY opportunity for sweetness, comfort, connection, meaning, and play. THIS is my new treatment regimen. Sending you love < 3

I am so sorry that you’ve suffered for so long. I also suffer from long covid. I lost my taste and smell in December of 2022 due to Covid. I had a very mild case of it and the doctor on call at my doctor’s office didn’t put me on an antibiotic, only steroids for 10 days. The steroids decreased the inflammation in my nasal passages somewhat, but it’s July of 2024 and I still don’t have my taste or smell back. I have had 4 Stellate Ganglion Block Injections that only slightly helped with taste/smell giving me a stronger sense of salty, sweet and bitter. I can smell my coffee grounds on most mornings, but that’s about it. I will be having another Stellate Ganglion Block injection in August and hope that will bring me closer to tasting and smelling again. Good luck on your journey.

I got COVID in November 2020 and my life has spiraled down and down. I am so dizzy and off balance all the time and walking with a walker is painful (that may be a separate problem with my back). I have been to 3 neurologists, chiropractors, ENT’s etc with no sign of no change in my problems. I get regular infusions of gamma globulin and that seems to have reduced my peripheral neuropathy. I don’t have diabetes so the neuropathy came after COVID. I am going to my first appointment with a counselor to see if I can some how change my attitude. I have tried on multiple occasions to get into Mayo Clinic with no success. This problem has put a real strain on my marriage since my wife has to do most of the work around the house and outside. I am just lost.