Has anyone completely gotten over Long Covid? Please post here

What is NRI and TENS. How did it help?

Yes; good to know someone is vastly improved. LC here since St. Pat's Day, 2023; usual stuff; debilitating fatigue; PEM with sleeplesssness; lightheadedness, loss of balance, occasional vertigo; rash (still got that, comes and goes); weird blood results (IgM about eight times normal, still looking into it); peripheral neuropathy; foggy brain, terrible memory problems, etc. I kept careful records, waited a year to get into a LC cliinic at Northwestern Memorial Hospital in Chicago. It consisted of one two-hour evaluation with a neurologist, lots of questions but no answers. Seems like with most LC clinics we are the subjects of their research... and many are closing because fewer people are turning up and there are really no "medically approved" treatments. Their recommendation: Monthly Zoom support/self-help meetings with others in the clinic; referral to "cognitive rehab" at Shirley Ryan Ability Lab, seven or eight sessions and really nothing I hadn't already figured out through research and reading this forum (pacing, lots of rest between efforts and not much else); also a referral to check out a wonky blood result (immune system is out of whack, working on that with a hematologist now, nada); and a prescription for Amantadine (stimulant, anti-viral, which they are studying now for usefulness in combatting fatigue but O! the side effects... so I'm not doing that. Otherwise, the head doc said this: "Most people with LC get better; we don't know why... maybe they eat more peanut butter... " Humorous, encouraging? Not very helpful. Since they didn't suggest any follow up visits, (you can have a virtual appointment with a PC if you request it, but nothing new there, just a check-in), so I can't imagine how a clinic knows people get better, let alone why. I agree... I think people just drift away if we get better... in the beginning we're very motivated to "figure it out," eventually research leads us to the same dead ends and we just ... lose interest in reading all about it. In my case, after a two and half years, I AM gradually getting better... fatigue is less debilitating, PEM less frequent and intense; brain is clearing up a bit... still got the rash. Maybe at 60-65% of "old" me now, from < 40 most days in the past. No days spent on the recliner waiting for bedtime so that I could NOT get some restful sleep, etc. I'm hanging in, meditating, reading positive stuff (The Beauty of Dusk by Frank Bruni; How to be Sick by Toni Bernhard) and now I can push myself a bit to exercise, do stuff, walk more... and those efforts used to flatten me for days. No prescription medications, no more alcohol, a better diet (sort of Mediterranean) daily supplements (multi; D, C, and Macuguard for the macular degeneration. (Oh yes, I am OLD.) The biggest change is probably attitudinal; from obsessive research, fury and outrage (and a little self-pity) at the whole thing, especially the medical profession, plus most people's lack of empathy/ignorance about LC... to something like acceptance without resignation. Some people truly have it a lot worse... not the life I ordered, but it's the one I got, etc. We are tough, we are survivors... and we have each other for understanding. Here, no one has to explain why they haven't just gotten better yet... And on the brighter side; research seems to be zeroing in on tiny particles of the Covid virus still dug in to various organs, very hard to detec... offering a direction for research that looks promising. Maybe not for me, but for the younger patients... all this takes a lot of time apparently. And money for research ... so...maybe a very long time.

Miraclestar,
Would you share with us more specifically HOW you “found ways to function exceptionally well?”. That would surely be a great benefit to all of us. We know about “pacing.” Did you do that as well as other things to overcome your LC symptoms?

Hello- This is not an easy question to answer as it has several pathways. Long covid/vaccine injury can be the main symptoms of brain fog, fatigue and SOB for example, however LC/VI can affect other systems and cause immune dysregulation, autonomic nervous dysfunction, hormone imbalance, mast cell activation, recurrent covid flares, vascular inflammation, activation of autoimmune, thyroiditis, activation of dormant viruses for example EBV. The treatment is different for each pathway, and some patients have several or all pathway complications, making their LC/VI more severe and chronic with other comorbidities. It is important to have a PCP who is up to date on current research to manage and treat effectively. As a practitioner with LV and a VI with the more severe complications, I keep up on research and treat many patients. So, to answer your questions, YES, some patients do slowly improve 100% while many do not.
A few things that do work is water fasting at least 5 days up to 21 days. This has to be done properly to be successful and feel great. There are many YouTube videos on this to educate yourself. Fasting is not for everyone but it is amazing for your body. The theory behind it is that when your body goes into autophagy, it does DNA repair and breaks down all the spike proteins that are thought to be causing havoc. Another thing that is helpful is blocking the mast cells, for example- Zyrtec, famotidine, aspirin, as well as others that need a prescription. Lastly, follow a low-histamine and low-inflammation diet. I am not giving advice, so please consult with your PCP and do your own research that is available. Hope this helps- Just wanted to share some things that I have found helpful over the years. Good Luck!
BillieSue

About NIR:Red and Near-Infrared (NIR) light therapy, also known as photobiomodulation, is a medical treatment that uses specific, non-UV wavelengths of light to stimulate healing at a cellular level.
How It Works
The therapy works by delivering concentrated light (typically red light at 630-660 nm and NIR at 810-850 nm) to the body. This light is absorbed by mitochondria, the "powerhouses" within our cells, boosting their production of ATP—the body's essential energy molecule.
This increase in cellular energy creates a cascade of positive effects:
* Reduces inflammation
* Improves blood circulation
* Accelerates tissue repair
Established Medical Uses
These benefits explain its success in various medical fields:
* Wound & Burn Healing: The therapy speeds up recovery, reduces scarring, and lowers infection risk by decreasing inflammation and increasing circulation to the damaged tissue.
* Stroke & Brain Injury: Near-infrared light can penetrate the skull to reduce brain inflammation, improve blood flow to damaged areas, and help protect neurons, aiding in cognitive and motor recovery.
Potential for Long COVID Treatment
The core symptoms of Long COVID align directly with what this therapy can address:
* Systemic Inflammation: Light therapy can help calm the chronic inflammation common in Long COVID.
* Fatigue: By boosting ATP production, it may restore cellular energy and combat profound fatigue.
* "Brain Fog": Its ability to reduce neuroinflammation and improve cerebral blood flow offers a potential mechanism to improve mental clarity.
In essence, by targeting the foundational issues of inflammation and energy depletion, red and NIR light therapy is a promising approach for treating the persistent symptoms of Long COVID.

To Everyone Suffering From Long Covid: I want to share what has helped me. I have been suffering with extreme fatigue for almost three years. I have had Covid twice. I am almost 64 years old and I work part-time on my own business.
My most prominent symptoms are Fatigue and Post-Exertional Malaise (ie. I feel horrible if I exercise too long and too intensely). After many, many visits to a variety of different doctors -- both traditional and non-traditional, I got in to see Dr. Hurt at the Mayo Clinic. I saw him in July of 2024. He confirmed that I had Long Covid.
Prior to seeing Dr. Hurt, a compounding pharmacy suggested I take Low Dose Naltrexone -- I titrated up to a dose of 2.5 mg and YAY! I felt like I was back to my normal energy! I was able to work full-time again. However, I contracted Covid again in January 2024 and I was back to having extreme fatigue.
When I visited with Dr. Hurt, he said that this is a common occurrence -- Low Dose Naltrexone (LDN) stops working when people get Covid again -- what I relief to know I was NOT crazy!
After going to Mayo - he suggested continuing on LDN. He also suggested the following:
Taking pre and pro-biotics in the form of a yogurt preparation called Kefir (I try to drink 8 oz of this every day). I find it at Trader Joes and local grocery stores. However the highest bacteria count is found in Nancy's Yogurt Kefir -- I order it through a grocery delivery service.
He also prescribed the use of a Vagal Nerve Stimulator (Truvaga) -- two minutes, 3 times per day. I do this faithfully. It is not an immediate charge of energy, but I think everything together is helping.
Also suggested was a drug called Guanfacine - an attention deficit disorder drug. I tried it and hated it. I have also tried other stimulant drugs and I just hated the way I felt.... like my body was fighting against itself!!!
Other supplements suggested are: NAC 600 mg. (I'm taking this), CoQ10 and Selenium (taking), L arginine with Vitamin C twice a day (just started taking) and Urolithin A 500 (have not tried yet as I don't want to start too many things at once and I want to accurately asses what's working).

Like many of the people on this forum -- pacing and lots of sleep are the most helpful. If/When I overdue it or don't get enough sleep, I feel terrible. I have experienced improvement compared to how I felt last fall. I've found "giving into it" works better than fighting through it -- rest helps my body recover the most quickly.
I think this very frustrating "disease" takes time -- improvement is very, very gradual. I pray to God for the day I feel "normal" again.
I hope this helps some of you dear people -- may God bless your recovery!

My rheumatologist has asked what year I had first covid and first/second covid vaccine. He is seeing different severities of LC depending on which Covid strain clients had. I was diagnosed with autoimmune LC with liver and lung involvement and Telangiectasia. My first Covid infection (mild case) was fall of 2020 which was the Delta strain. I received my vaccines in 2021 spring...Phizer. I am 58 y/o female who smokes. I have a history of high blood pressure and obesity. I have had 4 Covid infections since...seems like each time I have it, it is a worse case.