5 yrs post covid. Is there any help out there?

Hi Kevin, sorry to hear what you’re going through. I have some of your symptoms ie 24 7 brain fog, short term memory loss, insomnia, exertional fatigue and so on. I’ve had it for 5 years next month and it’s not any better. I see a long covid clinic and a neurologist and honestly after numerous tests, they don’t show a whole lot. My MRI showed some abnormal findings, but doesn’t say it’s “covid related” which I think it is. My labs were normal. Everything they prescribed wasn’t a treatment, but just treating symptoms. Nothing worked except vestibular therapy did help my balance. I do try to have the same sleep/wake cycle every night. That’s what the sleep dr recommended, so I go to sleep by 10-11. Then, set an alarm to wake up at 8. I think it’s beneficial. I also take NAC and Magnesium Glycinate(headaches/sleep).

I would get your insomnia under control stat. Insomnia is one of the most common LC symptoms. Lack of sleep can cause the body’s health to go off the rails. Not saying everything else will automatically go away, but a good night’s sleep is necessary and it will give you more energy during the day. Look for a “Speech Therapist” - they can help with memory and brain fog. https://www.expressable.com/learning-center/adults/long-covid-how-speech-therapy-helps-people-who-have-long-term-symptoms

We’ve had success with a natural medicine doctor who can test for the spike protein which can linger in the body/blood and act like a biotoxin. If present, you’ll need to detox from that and then address the other area of need. Often times, dormant bacteria’s that the immune system has been able to keep at bay, come alive and start doing damage to the body/nervous system. The detox is most important and can really help with brain fog.
Western medicine only has a test for the spike protein antigen which is different.

@h2998sc Glad to hear t's almost non-existent now!
Like the others I would love to know about the supplements. But also, what is the week long pills regime and the medication name? Thanking you in advance.

Low dose naltrexone has taken care of about 50% of the pain from inflammation for me and given me more energy and I sleep better. I tried every cream the dermatologist recommended but finally found that once a day application of AproDerm colloidal oat cream prevents rashes. Doc said the blue/white toes I get are Raynaud's Syndrome which came along with COVID induced scleroderma and psoriatic arthritis - no treatment advised as the toes only change color sporadically. I still get fatigue if I push too much and over exercising can set me back for 2 or more days but I have a much better life.

Had Covid Nov 2020 and subsequently long COVID—which started with the heart problems about 6 weeks in. In June 2024 I tested positive for micro clots through Dr Jordan Vaughn’s labs in Birmingham , Alabama. Started treatment in July 2024 with some drugs and many supplements, and in May 2025 began to feel almost normal again. I’m continuing with Dr Vaughn’s treatments and the improvement continues. All of my visits have been virtual. It’s been worth the expense and inconvenience of taking the medication and supplements.

@vostie how long did LDN take to work to help your inflammation? I’ve been on it since January 4 and I started at 1 mg and I’m titrated up to 3 mg. Did you have brain inflammation? I think mine must be pretty great because my anxiety is so bad at times even taking Klonopin. My doctor tested me for mold and that was fine. It’s just insane. How bad my anxiety is. It’s more physical rather than mental if that makes sense.

@robinrm I started giving relief at 3 mg but he eventually got the most relief at 4.5 which is where I have stayed. My belief is all long. Covid patients have inflammation of the brain and throughout their body. Drugs like LDN really helped minimize the inflammation and modulate the immune system so that it is not constantly causing inflammation. For me if I stay on a fairly strict diet, I no longer have any headaches, joint or muscle pain but as soon as I indulge in carbohydrates or sugar, about 50% of my pain comes back. I had short spells of anxiety, but nothing that lasted for more than just a few days, but I do hope LDN will help you as much as possibly can!

@janetlbhughes are you able to indicate ballpark expense of telehealth, labs, supplements? 6 years in March for me and feels hopeless. glad you're getting relief. the LC clinic I went to early on has since shuttered, sadly.

The first year was around $3000 for doctor support, labs were covered by Medicare, supplements are around $200 when I reorder every 6 weeks or so and the drugs were expensive until my deductible was met. But once I knew I had micro clots, we made a decision to spend the money. Who knows if I would be where I am today if I had not done it, but my husband and I knew I didn’t have any quality of life back then so we were willing to try. It has been successful for me. Of course I am aware that things could change, but right now I’m so much better. And that includes my brain. Because of my age, 76, I was very afraid I would never get my brain back, but it’s back. Good luck. The long distance support was very good the first year and is still ok, but I do think they are overwhelmed with so many patients who need help. I continue on the same routine and send a portal message if I have a question.