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Long COVID exists for 5+ years: Share what has or not worked for you
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.
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So I have this neck thing going on that I don't know what it is. It comes and goes, my airway is open buy feels like it is hard to breathe, like i am being choked, or like I am not getting oxygen into my blood but is restricted to my throat area (clot in Area?). When it gets bad I feel like I am going to pass out / stop breathing. Any idea what this is? What is going on? This started a few months ago.
It’s kind of hard to do when it’s been 4 years and you’re still not tasting or smelling your food or anything else for that matter! 5 years is a long time and wouldn’t you think that some doctor somewhere would have found a cure by now? It’s getting very old, very fast and we’re still struggling.
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1 Reaction@lkirnbauer
My daughter's CFS lasted 18 years, then she had about 20 years of feeling very good and now something CFS-like is back. She did have COVID in 2023, but no apparent appearance of Long-COVID. I got COVID first, then she got it (we were travelling together outside of the US). My Long-COVID has not shown any remission. It appears that Long-COVID, like CFS, may last a lifetime, or there may be recovery to pre-COVID status only to be followed by a return of previous symptoms. I just did an A-I search of "viruses that leave life-long symptoms" and I'm surprised at the number of them like measles coming back later as shingles, and others that simply have symptoms that don't go away.
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2 ReactionsOver a year ago I read an article about a study that taking a combination of CoQ10 and Alpha Lipoic Acid helped 50% of the people with brain fog. I gave it a try and it definitely helped me. Through the Mayo Clinic I learned of a small study of people going into a Hyperbolic Oxygen Chamber. I did that on December 19th and so far I haven't had one of the page and a half of the things I have felt with come back. I have been feeling great the last two months.
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3 ReactionsHi @mitribri. I am on my 5th yr and experience this same thing. As so many, providers have no specific cause and hard to describe so unless they have personally had it finding helpful techniques to manage has worked for me. I did have one reference to clothes hanger neck that resonated yet our own individual reactions may not fit that? Talking when feeling even a little worse or with other activity like writing or others in room brings this on for me🙃. I have put a heating pad at the top of pillow I lean against in upright position that I can adjust the temp to respond to severity and calm the reaction. May I suggest you research histamine reactions if new to you as that also really helped to reduce my episodes and I have a epi pen..Hope this helped and quickest healing to you🌈
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2 Reactions@joanland, I'm sorry to hear that you were turned down by your local Long Covid clinic. I believe many clinics specializing in long Covid receive more requests than appointments available. At Mayo Clinic, people seeking long Covid care are first evaluated in Internal General Medicine. Submitting a request for an appointment does not guarantee an appointment. If you contact Mayo Clinic, the appointment coordinator can give you a better idea of appointment availability https://mayocl.in/1mtmR63
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2 Reactions@colleenyoung
Thank you very much for your kind response to my posting. I have decided that it would be too taxing to visit a Mayo Clinic; I'm using my energy to take care of myself. Again, thank you for describing the process of obtaining assistance from a Mayo Clinic.
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1 Reaction@lkirnbauer completely agree. It’s almost 5 years for me and it’s very depressing. No one seems to understand nor to care. The doctors pretty much just tell me they don’t know or they are even more discouraging. I tried the essential oils, the nicotine patches, zinc, quercetin, and nothing seems to work. People keep saying covid is over but for many of us the struggles continue. God bless you all.
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7 Reactions@po777
What are your symptoms?
@drbf no taste/ smell almost 5 years now. I can do salty, sweet, spicy, sour but I don’t know what it is I am eating. It’s very depressing. Also, brain fog, forget easily, and first lost a lot of weight and in the past year started gaining even with good diet and exercise. Saw PCP, ENT, Neurologist and no help.