I’ll have a string of days where I’m okay with the mundanity of my life but then I’ll see something that reminds me of how abnormal and pathetic my life is. It’s just sad to think about the possibility of deteriorating, through no fault of my own because shit happens, and never being healthy again. But then I think about the fact that even if I do reach remission or raise my baseline significantly, it might be too late to “catch up” on experiences I missed out on. Who would hire me? How will I have enough money to live on my own or retire? Who would be friends with or date me? Most 23-year-olds don’t have their life on pause due to a weird illness so most won’t be understanding. The thought of my life being just as bad or worse, indefinitely, really makes me wish this disease was terminal. It just feels like my one life is being wasted. What will I even be known for, being sick? So many beautiful things I could be experiencing at this age and beyond are out of reach now. Each day I just wait for it to pass hoping that I’ll wake up and be better, but this never happens. I’m unsure it ever will.

My LC story is a weird one. I can't even tell if my symptoms were triggered by covid or the vaccine because I was so mild for years that I didn't know I was ill in the first place.

I had covid in early 2020 and got the vaccine the following year. A few months later I noticed that I had to take a nap each day after work. Like clockwork always at the same time. If I tried to skip the nap by exercising or watching TV or any sort of activity, I'd feel tired the entire evening. And my naps were short, like 45 minutes. They weren't even proper naps because I didn't fall asleep, I was just resting. This never happened on the weekend or after physical exertion and I was working from home all the time and didn't have a busy job so it's not like I had a reason to be exhausted. I thought I was just getting older or had a vitamin deficiency maybe, but I never looked into it because I thought everyone was like that lol.

Until, somehow, I started getting tired after very short walks last year. Took my usual naps and woke up with a headache. This has now developed into severe ME/CFS and it took me forever to realise that I was probably super extra mild for years. No idea what triggered it last year. A lot of people report that covid knocked them out straightaway, but I never had a post viral period. Has anyone else experienced something similar?

I first had Covid a few years ago. I experienced a sore throat at first and then the neurological symptoms set in. Brain fog, sore neck feeling, headaches and fatigue set in. This went on for 15 days. I would have hours of clarity but all of the symptoms came back on and off.

I noticed that the symptoms seemed worse if I ate pasta or overate. I stopped eating much toward the end of my illness. It cleared up and went away. I was about 43.

I just got what I believe to be Covid about 2 mo this ago. Same symptoms. Started with a sore throat, progressed into chest stuff and all of the neurological symptoms came back. I was feeling better after about 9 days.

I went out with friends for a late evening and everything came roaring back. My chest stuff turned into bronchitis and the brain fog and fatigue were terrible for another 5-6 weeks. At this point I am 46 years old.

Chest symptoms are clearing by the end of this time but brain fog, headaches, fatigue and sore neck are up and down the entire time with maybe 1-3 hours of relief from these symptoms a day. They always came back.

I happened to have HRT in my apartment- I had planned on starting estrogen and progesterone- cyclic bc I still get my period. I ordered it from Winona, an online pharmacy, but I wanted to get the plan checked with a doctor in person who I am scheduled to see in April.

I was so desperate and after reading some research literature I decided to start on my own. Within two days all symptoms had resolved. I also went on a crash diet out of fear- very few carbs and entered a calorie deficit probably around week 4.

All symptoms gone after starting HRT within 48 hours. I feel great. It is possible it was a coincidence but sure doesn’t seem like it!

So I am feeling great and then I get a massive exposure of Covid from my massage therapist one week after my issues resolve. 4 days later I get headache, achy neck, fatigue. No brain fog. This resolves in 6 days and now I am left recovering from the illness overall but feel quite normal.

Kept a detailed health journal for 3 months while I took it.

The drug didn't do jack squat for me, outside of consistent canker sores which started about a month in and went away a week after I stopped.

The journal helped make the importance of sleep more clear though. The majority of my crashes followed periods of poor sleep.

Hey everyone,

I wanted to share some research I’ve done on the Aviv Clinic and their approach to treating long COVID, brain fog, traumatic brain injuries, and other chronic neurological conditions. I know many of us are navigating the overwhelming world of healing options, and this is one of those clinics that caught my attention — both for the science behind it and the steep price tag.

What is Aviv Clinic?
Aviv Clinics, based in Florida (with other global locations), offers an advanced Hyperbaric Oxygen Therapy (HBOT) protocol combined with cognitive and physical training, dietary coaching, and a personalized program targeting neurological recovery and cellular regeneration.

Their method is based on research published in peer-reviewed journals, including work out of Tel Aviv University. In a nutshell, their HBOT protocol uses fluctuating oxygen levels (including oxygen “dips”) to trigger the body’s natural regenerative processes — especially in the brain. They claim improvements in:

• Cognitive function (memory, focus, processing speed)
• Energy levels and physical performance
• PTSD symptoms, depression, and anxiety
• Long COVID symptoms, especially brain fog
• Post-concussion syndrome and mild traumatic brain injury

What Stood Out to Me
The most impressive thing was the brain imaging — SPECT scans and fMRIs — done before and after the 12-week program. Many patients show measurable improvements in brain activity, blood flow, and cognitive testing. For someone dealing with long COVID and/or neuroinflammation, that’s a huge deal.

They also provide baseline testing that’s far more in-depth than what many of us have access to through traditional providers. You don’t just get a “one-size-fits-all” oxygen session — it’s paired with tailored neurocognitive exercises, physical training, and diet coaching, which all reinforce the HBOT.

The Catch: The Price Tag
Unfortunately, the cost is absolutely out of reach for most people — around $60,000+ for the full 3-month protocol. It’s not covered by insurance since it’s considered elective or experimental outside of FDA-approved conditions.

That’s a hard pill to swallow. For many of us struggling with chronic illness, long COVID, or brain injury, we barely have the capacity to work — let alone pay tens of thousands for a treatment, no matter how promising.

My Take
I do think Aviv is doing something important by advancing HBOT beyond wound care and into the neurological space. The science is promising, and it’s given me hope that healing IS possible, even when mainstream medicine doesn’t have answers. But I also want to acknowledge the real frustration of discovering something so potentially life-changing, only to be blocked by finances.

If you’ve tried Aviv or any similar HBOT clinic with a more accessible model, please share your experience. I think we’re all trying to find the balance between hope, skepticism, and realistic options.

Wishing healing to all of us on this journey.

YouTube Video Explanation
I’ve attached a link to a YouTube video that explains their theory and protocol in detail, straight from their clinical team. It really helped me understand why their approach is different and what makes it potentially so effective. https://www.youtube.com/watch?v=6GDY_pBwmG4&t=2857s

I've recently had a significant improvement in my energy levels and anhedonia (inability to feel pleasure) after starting iron supplements. I no longer feel tired throughout the day - it's like going from a 4.5 to a 7 on the energy scale.

Taking a large dose of vitamin D also improved my symptoms. So far, iron and vitamin D have been the most helpful supplements for me.

The iron seems to be helping with both anhedonia and post-exertional malaise (PEM) - I haven't experienced PEM in the last few days. This is only my third day on iron, so I'm cautiously optimistic.

What I'd Recommend Trying as one-off:

• Large vitamin D dose (80,000 IU) with a high-fat meal
• Iron (80-100mg) on an empty stomach with vitamin C (1000mg)

I strongly suggest speaking with your doctor before trying any supplements, especially at higher doses. My experience is just one data point, and a healthcare provider can help determine if these supplements are appropriate for your specific situation and can order tests to check for any deficiencies.

It's possible I had iron deficiency that wasn't showing up in standard tests. Some research suggests chronic inflammation can affect iron biomarkers, potentially masking deficiency.

I've also been taking other supplements (niacin, L-carnitine, D-ribose, alpha-lipoic acid, fish oil, ubiquinol, oxaloacetate and others) for a while but never noticed as dramatic an improvement as I did with iron and vitamin D.

This isn't a cure, but if you're struggling with similar symptoms, discussing these supplements with your doctor might be worth considering to check if you have any deficiencies.

I'll keep you all posted on whether these improvements last. I've noticed that sometimes when I share positive changes, they mysteriously stop working shortly after (seems to be my luck). Fingers crossed this time is different!

Please tell me you are out there, and if you are please share your story, your symptoms, anything to please give us hope. Everyday is a struggle, i started hating my body as to why its screwing up my life left and right. You dont have to share a long story, if you hate articulating you can write something quick and brief....it makes me hang on to little hope if any please.

All the recovery stories are people with mild symptoms in comparison, they either can walk 5000 steps, jog, still working etc. plus i try to message people whom recovered by i keep getting cannot load profile, its so depressing...

Example

Yes i was severe, had pots, no meds, only supplements, felt better in month 11.

Example 2

Yes i was moderate, had neuro issues, started to get better around month 13.

Example 3

Yes i was severe, im on heavy medication, i can partially function and i am starting to recover around month 8

Example 4

Was severe, recovered around 18 months, feeling back to normal and exercising daily....

Example 5

Was severe, spontaneous recovery in month 10

If you wish to expand and write more, the better but please share your fresh stories i really need to get better as i feel lost with this disease.

I caught Covid in 2022 and my initial infection was fairly mild. About a month after recovery, I got a bunch of LC symptoms. My main symptoms are neurological, including visual snow, numbness and perceived weakness on the right side of my body, brain fog, head pressure, headaches, vertigo and dizziness. When these symptoms first appeared, I was very, very stressed, constantly thinking the worst. My health anxiety skyrocketed. Eventually, I got accustomed to my symptoms and they seemed to die down and not really affect my life. Sure, there were days with flares and where I felt awful again, but they weren't that common.

In mid December of last year, a lot of my symptoms came back or intensified. I experienced a lot more eye floaters than I did before, I developed some vertigo, I was having constant headaches, my brain fog returned and was anxious/felt like I was dying at all times. I was experiencing a lot of symtpoms of a brain tumor and MS. If you go through my post history, you can see the time period where I was constantly posting to this sub searching for answers. Eventually, these symptoms died down again in around early January but I couldn't help but notice I didn't feel as great as I did previously.

Now, for the past month and a half, Ive been experiencing a lot of these symptoms again. Particularly, depersonalisation/derealization and more recently, horrible brain fog, vertigo and constant headaches. I often forget what Im thinking about like 5 seconds after I think it and have just felt cognitively slow, and a lot of times I feel like I'm just watching myself live like I'm in a movie. These past few days my hearing has felt awful and I often feel like im rocking or swaying when standing.

To sum it up, what I'm saying is that I'm starting to fear something that isn't being caused by Long Covid, such as a brain tumor or something severe like that. I have a bunch of symptoms (headaches, numbness of one side, dizziness, phantom smells, pins and needles, some fatigue) that coincide with ones of a brain tumor. The only ones I don't experience are vomiting, nausea , seizures and noticeable changes in vision or personality. It feels like Ive just been getting worse and worse as time goes on.

Hi guys, I'm very new to this but I used the search bar and felt like there wasn't much consensus on what high spike proteins mean. My doctor thinks that I have covid vax injury I believe and ordered the spike protein antibody test. I was (and am) skeptical, particularly since a) my issues largely predate covid and b) there's been so much politicization of this issue that I don't know what's true or not.

Anyway, in spite of my skepticism, my spike protein antibodies came back off the charts high (>25,000). I see him on Monday and was hoping to get some idea of what that actually means, because some places are saying that high antibodies are good and others appear to be suggesting that they're harmful.

Idk if it's of interest but my EBV antibodies for past infection have also always been off the charts high. I had it in elementary school and I think it's reactivated at least once. It hasn't been active in years but the antibodies are still higher than the reference range goes.

Last month i finally got diagnosed with MCAS etc. I tried LDN twice and i felt it made a massive improvement, but 0.5 is too much for me and i cannot sleep, plus now i'm in a deep blue mood and i'm afraid that would make me even worse. so i took it only twice some 10 days ago, and now i'm desperately waiting to get a 0.1mg dosage to start asap.
In the meantime my terrys nails are spreading, my fingertip ache, lunas began to discolor even from thumbs.
Today i just realized it's a lot harder now to do what i was able to do even just in january, in the middle of all the mess. I also noticed that on the same saturimeter i used before, and that scored 97% in july, then 98% from september to january, i now score 95%, with a 93 bpm while sitting.

The specialist that saw me told me that if these nails werent getting better soon, i should check my lungs.
My systemic problems started in may. My lungs got checked in june and they were 100% fine (i also never smoked).
I however started to worsen in many departments, including a zoster reactivation, end of last september, at the same time of a water infiltration in the outer wall of the bedroom i was using that developed mold soon after and which i treated with a product wearing a mask, and then stopped using the room.

I wonder if my problems can be a result of LC + mold exposure? Has this happened to anybody else? does it make any sense to get one of those mold testing kits or are they too inaccurate to make sense?

In addition to an antihistamine & antidepressant , aspirin provided relief of my remaining symptoms such as tight feeling in veins all over my body, remaining brain fog and head pain, & muscle tightness. The remaining pins and needles also resolved as well. My labs indicated inflammation for sure but would i have to look into a clotting issue?

What supplements are you guys taking for clotting/spike protein reduction? LDN might be on my list of medications to try for my LC issues.

So my weight is constantly going up or down, five to eight pounds over the course of a few days to a week. If I start sleeping more poorly, pushing myself harder, and other autonomic things start flaring, I start dropping weight like clockwork. Even without any change in my diet it’ll start going.

Does anyone else get this? I don’t technically know that it’s due to autonomic disturbance but I don’t think it’s an energy thing; I can do nothing but rest, but if my sleep is all over the place it starts up again.

I started taking NAC with molybdenum and selenium as well as a little bit of glycine every night. Stuff makes me great for a week or two then I get a lot of joint inflammation. It goes away after I stop for a week or so. Anybody know what's going on here or have something similar happening? Am I missing something?

Going on 4 years of LC, for the most part all of my symptoms cleared up besides the muscle twitching and anxiety. I got reinfected in December this past year. This last week I’ve felt very unbalanced and dizzy, but not like a spinning kind of dizzy, more just an uneven feeling. Hard to describe. I’ve had intense brain fog and dizziness before, and the feeling that I wasn’t walking properly but this is a different level. My anxiety is through the roof thinking I have MS. I have to concentrate on walking, and my legs feel very wobbly. My one foot also feels super reactive? Like when I step it lifts off the ground right away. The dizziness and brain fog seem to come back around spring always so can’t help but feel allergies really have an impact. Being a part of this group so long I know a lot of these are very common LC symptoms, but hopeful there’s some similar stories with a quick recovery time out there. I’m 32, male in good shape, but struggling to simply walk my dog right now. I also wonder how much my anxiety is affecting all my symptoms.

I'm looking into getting an SGB. Ive heard such varying results from people who have had it done. I'm not sure if there are certain doctors in the US that it is best to go to for this or it can just be any clinic that performs them. I live in a rural area so I'd most likely have to fly out somewhere, but that's okay if it's worth it.

Anyone have any advice? Anyone have an SGB done?

Hi all- just wanted to share some information in case it’s helpful for anyone. I’m located in Australia and I’m a 35yo female. Vaccinated x 2 with Pfizer and x 1 with Novavax. Waiting for Novavax to be available in Australia again. I work full time (and it’s a push- I don’t have a choice sadly, I haven’t worked full time this whole time).

I was infected with COVID for the first time in July 2022 (I tried VERY had not to get COVID before then and after and I’ve had it a second time in November 2024). My main symptoms were low grade fevers, myoclonic jerks at sleep onset, weak joints and muscles, fatigue, PEM with these symptoms getting worse after physical activity. The worst of my symptoms were myoclonic jerks at sleep onset.

As many of us have done, I’ve been to many health professionals and finally found a great GP who has an interest in long COVID. She prescribed LDN and over time I’ve been able to tolerate more activity, and although it didn’t change the myoclonic jerks, when I did sleep I was sleeping deeper.

After I got COVID a second time I panicked and knew I needed a medication to help me get through the months of waiting to see what new symptoms may emerge (I took Metformin for 3 weeks during and post the second infection). My GP had offered Valdoxan prior and I said no because I was anxious about anything possibly making my jerks worse (it’s an atypical antidepressant). Over time, the Valdoxan has helped me get 7-8 hours sleep a night. I still get the myoclonic jerks but rather than having them for 3-5 hours and hundreds of them, now a bad night is once a month and most of the time I’m falling asleep within 30 minutes with reduced jerks. Exercise will make it worse but I’m cautiously and slowly introducing more activity at the moment.

My 3rd neurologist thinks that I have damage to my nDNA receptors, meaning that I have difficulty inhibiting the excitability of these neurons and therefore movement. He said he’s seen it after COVID but people got better by 1.5 years (I’m over 2 years).

I am aware Valdoxan isn’t available in every country. It also comes with a caution to check liver levels initially with the medication. I haven’t had any side effects other than finding it a bit harder to wake of a morning. It has also helped with anxiety. I’m very grateful that I’ve found some things that have helped reduce some suffering, and wanting to share in case any of this is useful to anyone.

Just a disclaimer, I am not talking about people who undoubtedly suffered damage to organs, blood vessels, immune system, etc as a direct result of the virus. I am primarily referring to diseases such as ME/CFS that existed long before COVID and have non infectious triggers such as surgery, pregnancy, and traumatic injuries.

I am realizing that the reason we have so little answers on “long COVID” is because we’re all lumped together in research. LC is treated as a single condition encompassing every condition ever, from a lingering cough to life changing disabilities. It seems much more reasonable to believe that covid is just a single trigger for different diseases.

I believe chasing viral persistence as a cause for covid induced ME/CFS is likely to be a dead end. I’m even starting to doubt it’s autoimmune, given how many of us have negative ANA and normal immunoglobulin. It’s very possible this disease was already looming inside us and could’ve been triggered by anything at any time. I suspect the root cause lies in an epigenetic switch that is flipped through traumatic experiences, ours being the virus. What are your thoughts?

I know many are bed bound from this illness so forgive me for asking the question. But those who are able to work or have to work has anyone said screw it? And just started living life how they used to and hope for the best?

I’m at the end of my rope. The derealization is too much. I am so tempted to say F it and order a pizza tonight and drink a couple beers. I’ve been so strict for 20 months now.

Honestly banking on the fact this won’t kill me and if it does at least I’ll enjoy my life in the meantime. I’m losing so much patience living like an animal in a cage.

Curious if anyone has tried this and whether it worked or caused crashes.

Appreciate any feedback. God Bless. 🙏💪

How sipavibart can help digestive disorders if this is linked to long Covid

I made 3 phone calls today to different places I need to get ahold of and they all hung up on me either before I could get through or while on hold. Why am I bothering anymore. Getting help is nearly impossible. It’s a joke at this point to have to call a government or medical office. How does anyone get care at this point outside of the ER? Anyone actually have a medical insurance that works? 😑

Like a couple weeks ago I was better, to the point where I was helping my dad welding. It felt amazing.

Now I’m back to hell? Aching all over, cold extremities, palpitations, anhedonia, muscle spasms, nerve twitches, suddenly feeling frozen.

I put on a 3.5mg nicotine patch, seems to be helping a bit. Also had a small amount of alcohol. Anything to kind of reduce the tension. The 10mg propranolol didn’t really help this time but I don’t want to get a tolerance.

I guess on the bright side I’m hopefully for another remission but I don’t understand how it’s so random.

I’m on 3 years, off and on.

I am frankly tired of people not understanding long COVID. Just today, I went to my great aunt's to stay for a while, it was a 4 hour car ride, and naturally I arrived exhausted. Just sitting for so long is already a lot, not to mention all the noise and light. And yet, my greetings were that I shouldn't be tired, because I wasn't driving. Except I am in fact more tired than the person who was driving.

I feel like I've tried a million ways to get the point across to multiple people, most of the time it just doesn't work. Maybe if I didn't have all of that brain fog I'd think of something better to say, but since that's clearly not the case right now, I was wondering, how do y'all explain long COVID?

Some parts are easier, like digestive issues, that's easily explained. Same for the respiratory/allergy part, since that's something I already had before, it's just become exponentially worse. Fatigue and PEM however I really have trouble explaining, idk how to make people understand that just because an activity isn't tiring for them, doesn't it won't knock me out for a few days.

Someone (@SalvMattera on Twitter/X) in the Long COVID community has built this new website: https://helpforlongcovid.com/care-providers

It’s a platform where people with Long COVID can share and read reviews of doctors, clinics, and treatments. The goal is to build a central, crowdsourced database of clinicians who actually understand Long COVID and to collect insights into what treatments are helping people.

If you’ve seen a doctor who helped you, or want to give a gaslighting doctor a bad review, or if you’ve tried any treatments worth reviewing, please consider submitting a review. Every contribution helps the whole community.

Bonus: For every review submitted, the creator of the website is donating $15 to a Long COVID-related organization.

If we reach 250 unique clinicians with at least one solid review each, he’ll also donate $500 each to Patient Led and PolyBio.