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

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.

Jump to this post

My bad I was replying to someone else who linked LC to vaccine. Main point is that while LC has been hard to pinpoint, it has been related to having covid and not getting a vaccine and I've never read or heard anything different. Most importantly point is someone should not seek to have LC verified but be aggressive in seeking doctors/specialists who see one's sym;ptoms as real regardless of whether they will commit to a diagnosis of LC or not; as there real is no validating test or set of symptoms that difinitively do that. Obviously though clinics have been extablished around LC as people have continued to struggle with symptoms after having covid. We can only hope that structure helps in research and learning and sharing how to treat the many and varied symptoms of LC...

REPLY
@ericy210

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.

Jump to this post

Agreed. It has been like pulling teeth to get some docs to get interested in what’s going on and communicate with each other. When I told my PCP I was losing weight without trying he said “keep up the good work”. It took a follow-up letter from me saying this was a problem and I needed help. I had to plead to get into a local long Covid program. Even there I was met skepticism - they at first did not believe I had a real seizure - thought it was psychogenic. It took a sleep seizure to convince them. Now all the docs are on board that I got issues, even if they don’t know what or why yet. A plus is they can all see each others notes and diagnoses. Still a long way to go but hoping they are on the right track.

REPLY

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!!!

REPLY

The LC clinics do see patients who get LC from Covid vaccines. Rare but it does happen. The man who was getting hyperbaric oxygen before me had this. This is why I am hesitant about getting vaccine
Can anyone share a functional or integrative physician who specializes in LC pt care

REPLY

Don’t give up! It’s taken me 2.5 years to finally ‘begin’ to return to normalcy. Have u tried all of the various protocols? Dr McCullough? Dr Syed Haider? Dr Ardis? One thing I’ve learned is that one size (approach) does not fit all. There’s hope that these spike proteins can be eliminated from our bodies. And, if Dr Ardis is correct…there’s other ‘things’ causing memory loss, neuropathy, etc…Keep researching & don’t just depend on being a lab rat for the trials you’re in. Best of luck!

REPLY
@belson

The LC clinics do see patients who get LC from Covid vaccines. Rare but it does happen. The man who was getting hyperbaric oxygen before me had this. This is why I am hesitant about getting vaccine
Can anyone share a functional or integrative physician who specializes in LC pt care

Jump to this post

A good & knowledgeable teledoc I’m using is Dr Syed Haider at MygotoDoc.com

REPLY
@ericy210

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.

Jump to this post

I totally agree! I love snow. It made me happy to see snow this weekend. I also have become a crazy decorator. Apparently I need to have to change my scenery at home as I am here almost all the time. I put away Christmas stuff and have rustic winter decor now which is making me happy. I have bought flameless candles as I apparently love candle lighting when I am watching tv. There are lots of things we can find to make us happy. I have cats, more than my normal limit of 2 as my kids kept bringing me kittens. I absolutely love them. I am grateful I can work and I do only schedule meetings during certain time periods. I can work in the morning but struggle with brain fog for a while so talking is out. Same for the afternoon at which time I am exhausted and I work on less complex items. I am very happy for you, it sounds like you are taking great care of yourself. I hope life continues to improve for all of us!

REPLY
@belson

Ericy220
Your recovery after several years is wonderful
I agree Mayo is the best. When I went both the clinician and I felt I was headed for recovery so we didn’t need a plan. Unfortunately I was not in recovery and it was a temporary lull. You credit less symptoms to your plan, can you tell us what your steps were to get there and thanks for the encouragement

Jump to this post

@belson maybe you are directing your question at me? My LC was caused by first booster in November’21. Went to my local GP January ‘22 and began “the journey of what it’s not” because Charleston SC medical professionals just don’t know lots about LC. A tilt table test detected ‘some level of dysautonomia’ which is a symptom of LC. Finally in August ‘23 (took me that long to wind through all specialists and tests) went to Mayo Rochester. Mayo runs a LC 3 month program where u develop a plan of supplements, prescriptions, exercise, do and don’t. It’s January ‘24 and I feel better but not 100%. Will I ever feel 100%?? That’s TBD but at least I understand what I have and can manage it.

REPLY
@belson

The LC clinics do see patients who get LC from Covid vaccines. Rare but it does happen. The man who was getting hyperbaric oxygen before me had this. This is why I am hesitant about getting vaccine
Can anyone share a functional or integrative physician who specializes in LC pt care

Jump to this post

Perhaps he had covid while waiting for the shots to kick in. Or if you have several at once, (flu, shingles, RSV etc) its too much of an overload on your adrenal glands, esp if there is already a weakend immune system. Your bidy will not produce good immunity to any of them. If the shot gives people long term covid bit they never had covid, i'd call that a vaccine allergy. Makes sense yoh can't get long covid if you never had covid.

I heard my pots cardiologist tell a client to never ever get vaccines closer than 6 weeks apart. I've never tested positive but have hsd it three times, first before the vaccine was made, July 2020 I've been sick for years. I'm on 02 during the day. Pots. BP meds, CPAP at night with 02 etc. I know how bad this is, believe me.

I had a blood test done that doesn't show immunity but if you actually had it. Mine read high. I never tested positive! I think its people noy knowing they had it or tested negative do called it the flu. There was much shame and denial early on. Allergies to vaccine ingredients sre not uncommon esp if allergic to eggs or the binder they use in the med.

REPLY
@chrisself

A good & knowledgeable teledoc I’m using is Dr Syed Haider at MygotoDoc.com

Jump to this post

How does he check your blood pressure, listen to your lungs etc? Drs have to see mire than your head on.occasion to read body language. And more. Thanks

REPLY
Please sign in or register to post a reply.