1. < Post-COVID Recovery & COVID-19
Profile picture for chuckstran

Long COVID exists for 5+ years: Share what has or not worked for you

Posted by chuckstran @chuckstran, Oct 6, 2025

It is out of my skepticism and disillusioment that I have pro-actively sought the truth, and found much of it elsewhere than in conventional medicine's approach to dealing with my own long COVID.

That's what led me to this board, where I have learned much and have contributed what I can.

The medical community has been dealing with long COVID for five long years.

Isn't that long enough for treating brain fog and post-exertion fatigue with amped-up doses of creatine and L-glutamie to become widespread?

Isn't that long enough for using NAC, guiafeninsen, and/or mullien to combat the respiratory effects of long COVID to become widespread?

Are we left to trust our altruistic philathropic benefactors, such as Bill Gates, to back away from his moneychanging tables at Moderna and let us in on what is readily at hand that works? Or do big pharma, in league with power politics, have too big a grip on our healthcare?

My personal care physician is a good man, a good doc, and is doing the best he can. But even he and those like him have a big patch of tall weeds to find their way through, in searching for the truth which they in turn attempt to deliver to us. And he and others like him, along with some of us, have reason for our skepticism.

But in our skepticism we must press on, encourage one another, share what works and what doesn't, verify what is successful - and then trust.

Be strong, and of good courage. God has not forgotten us. Trust Him, hope in Him, and press on.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

Profile picture for joanland
joanland | @joanland | Jan 20 5:44pm

There will be a seminar on the trajectory of Long-COVID Recovery in Adults by a panel. The program is sponsored by RECOVER, working under the National Institutes of Health. Here's the announcement:

Upcoming R3 Seminar: Long COVID trajectories in adults
Tuesday, February 10, 2025, 12:00–1:30 PM ET
The R3 Seminar Series shares the latest RECOVER research with the broader community.
In this seminar, panelists will share findings from the RECOVER adult observational study about clinical presentations of Long COVID and its progression over time, including different symptom patterns. Panelists will discuss from their perspective what these findings mean for the diagnosis of Long COVID, patient care, and clinical trials.

Panelists for this seminar will include:
Sarah Donohue, PhD, MPH, University of Illinois College of Medicine
Timothy Henrich, MD, University of California San Francisco
Mady Hornig, MD, MA, RECOVER Patient and Caregiver Representative; The Feinstein Institutes for Medical Research, Northwell Health; Massachusetts Institute of Technology
Tanayott (Tony) Thaweethai, PhD, Massachusetts General Hospital, Harvard Medical School

To register for the seminar go to: RecoverCovid.org, look for the Seminar, register using the link.

REPLY
Profile picture for joanland
joanland | @joanland | Jan 20 5:48pm
In reply to @shario "I got Covid last March and have had long Covid since then. My Dr. does believe..." + (show)
Profile picture for shario @shario

I got Covid last March and have had long Covid since then. My Dr. does believe it exists and for that I have been most thankful. His belief is that I will get better and that has been true. I went through periods of being so dizzy, brain fog, anxiety, shortness of breath and fatigue that I could hardly function at all. I was getting afraid to drive somedays as my focus, attention, and alertness were all off plus being dizzy. If I tried cooking something I would have to sit down 3-4 times because I was too dizzy to stand for more than couple minutes. I use the word Dizzy but that is not quite accurate to the experience. I am sure some of you know what I mean. I told my Dr. once I feel like my brain is swollen doesn't fit in my head. Thick headed? Woozy? Would need a 2 hour nap every afternoon I would be so wiped out. Now I have good days where I feel totally normal. I chose not to take anything to treat symptoms as the options of different supplements, medications etc. etc. to try seemed too overwhelming. My challenge now is when I have a "good" day, I believe I might be well finally but find that's not the way it is. But I am improving so try be hopeful. Today I took my dog to the park and walked which I had not been able to do for a long time. I am encouraged. To all of you, try to stay hopeful and be sure to have a Doc who believes you.

Jump to this post

@shario
Wishing you many more "good" days!

REPLY
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 2 9:07pm
In reply to @rgoldstein909 "To the Mayo Clinic Long COVID Team, My name is Richard Goldstein. I contracted COVID-19 on..." + (show)
Profile picture for rgoldstein909 @rgoldstein909

To the Mayo Clinic Long COVID Team,

My name is Richard Goldstein. I contracted COVID-19 on January 6, 2021 while working on duty as a police officer. More than five years later, I am still living with persistent symptoms and am now medically retired, yet I am still involved in an ongoing workers’ compensation process where insurers continue to question the legitimacy of my condition.

My symptoms include brain fog, tinnitus, chronic fatigue, reduced lung capacity, joint pain, body aches, muscle weakness, reduced endurance, and a pattern of having “good days and bad days.” Some days I can function relatively well, and the next day I may be completely exhausted. A pulmonary specialist has documented glass-type nodules in my lungs, and I have also experienced rashes on my arms and legs.

Like many others, I have been made to feel as though my symptoms are not believed, which has been extremely frustrating and emotionally difficult. Finding communities of people experiencing the same long-term effects has been validating and reassuring — I finally know I am not alone and not imagining this.

I have also noticed that red light therapy seems to help somewhat with symptoms. I am curious whether others with Long COVID experience the same fluctuation in energy levels — feeling relatively strong one day and significantly worse the next.

I would appreciate any information about your Long COVID programs, evaluation options, or resources available to patients like me.

Thank you for the work you do and for recognizing the reality of this condition.

Sincerely,
Richard Goldstein

Jump to this post

@rgoldstein909, it can be hard to get care for long COVID. It's not uncommon for people with long COVID to have their health problems dismissed by others, including healthcare professionals, family members or employers.

Pulling together information about symptoms and timing can be a challenge. This is especially true when medical history is fragmented or when someone is managing symptoms related to memory or that affect the thought process.

To request evaluation for Long Covid at Mayo Clinic, your first step is to submit a request to General Internal Medicine here: https://mayocl.in/1mtmR63

REPLY
Profile picture for joanland
joanland | @joanland | Feb 4 12:17pm

@collene young Thank you so much for this post. Does Mayo Clinic accept most Long-Covid patients? I was turned down by the only Long-Covid clinic in OR (at OR's med school) because they only accept referrals from their own primary care providers. Living 4 hours away from their location, it was not reasonable for me to go there to see a primary care provider. Again, thank you for your information.

REPLY
1 reply
Profile picture for kyrazpollet
kyrazpollet | @kyrazpollet | Feb 6 12:24pm

I got Mayo Clinic info on my Connect Mayo-.
There is no Mayo Clinic. I just reading Patients’ comments. I was hoping this joint ,which advertises tement and you’ll be seen by a real doc, who specializes in this. They are billing Medicare now . It was and is a waste of taxpayers money.

REPLY
1 reply
Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 6 2:16pm
In reply to @kyrazpollet "I got Mayo Clinic info on my Connect Mayo-. There is no Mayo Clinic. I just..." + (show)
Profile picture for kyrazpollet @kyrazpollet

I got Mayo Clinic info on my Connect Mayo-.
There is no Mayo Clinic. I just reading Patients’ comments. I was hoping this joint ,which advertises tement and you’ll be seen by a real doc, who specializes in this. They are billing Medicare now . It was and is a waste of taxpayers money.

Jump to this post

@kyrazpollet, you're right. This site Mayo Clinic Connect is an online forum where patients can connect and share their health experiences and knowledge. If you are looking for expert medical advice, you can submit an appointment request to Mayo Clinic here: https://mayocl.in/1mtmR63

For questions about insurance coverage for medical services at Mayo Clinic, contact Billing & Insurance https://www.mayoclinic.org/billing-insurance

For information about Long COVID from Mayo Clinic, visit this website:
- Long COVID: Lasting effects of COVID-19 https://www.mayoclinic.org/diseases-conditions/coronavirus/in-depth/coronavirus-long-term-effects/art-20490351

If you have any questions about Mayo Clinic Connect or wish to delete your account, contact a moderator using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

REPLY
Profile picture for mitribri
mitribri | @mitribri | Feb 7 10:35am

I am turning 50 this year and have for over 12 months suffered from Long COVID. Symptoms seem to start with severe restriction in my neck area. I can breathe so not asthmatic, but feels like I am being strangled. This can go on for hours which seems to transfer to my diaphragm (like I am wearing a very tight corset). Other times I get uncomfortable to sharp pains in my left chest area including palpitations. Then there is the brain fog. I can exercise lightly, but I pay for it severely later which is quite difficult for me as I am a 20 yr endurance athlete. I have not worked out regularly in over a year.

Agree that you need to find a Dr that listens and believes. I just changed Dr after passing every test they threw at me for 12 months and not being believed. Current Dr is actually looking into Long Covid and starting me out on vitamins (K2, D3, Magnesium glycinate), Neltrexon, Nattokinase, Probiotics, melatonin, and next week Ivermectin. Too early to tell anything yet.

REPLY
Profile picture for anney
anney | @anney | Feb 8 6:24pm

The ONLY good help I've found is from Dr. Tim Robinson at: longcoviddoctor.com.
He was a private doctor in England for 30 years, then joined the English National Health Service, and started this site to help us with Long COVID. For each symptom, he has Part 1 explaining what is going on in your body and how you got LC. In Part 2 (Management and Treatment) he agrees that there is no treatment, but he carefully shows us how to gradually feel better. For Exertion and Exercise Intolerance, which I have, he shows guideposts. I blacked out after my usual 36 laps in the swimming pool; with his help, I have slowly worked from 5 laps to 6 to 7 etc. Now I can swim 14 laps, going on 15. Also, since he can't legally tell us what supplements to take, he tells us what some other patients have found helpful. Anney

REPLY
Profile picture for jfbock
jfbock | @jfbock | Feb 9 11:46am

two months ago I went into a hyperbolic oxygen chamber for about two hours. I haven't yet dealt with any of the long list of issues I was dealing with. Hoping it continues.

REPLY
Profile picture for beachbum
beachbum | @arichards3 | Feb 10 5:53am

Believing it was LC and finding out it was Mold Illness triggered by the Covid vaccine.

REPLY
View MoreView Less
Please sign in or register to post a reply.