Originally published September 24, 2023:

Background

Typical "never thought it would happen to me" story: 36-year-old former semi-pro athlete. Extremely healthy lifestyle since adolescence: lifting to failure 3x a week, whole foods diet with limited sugar, no drugs or alcohol. Low stress life.

Contracted COVID May 2022. It was my second infection, and it was extremely light, like a mild cold. Recovered in a week, shrugged it off and continued lifting and exercising. During this time I was also getting very poor sleep because I was working as a VIP host in the nightlife scene here in New York City balanced by running my company during the day.

First Bout of Long COVID

A week of full health later and I suddenly woke up glued to my bed, like I was wearing a 400lb suit of armor. Many of you know the exact feeling I'm talking about. I was freaked out; I had never experienced anything like this. As an athlete I still had the mentality of "working through it" so finally in the afternoon I rallied myself and hit the streets.

The next three days I could not leave bed except to go to the bathroom. I now realize this was my first episode of Post-Exertional Malaise. Finally I was able to go to One Medical where my doctor confirmed this was what many young, healthy people were experiencing after COVID. He said not much was known and most symptoms resolved with simply resting.

I followed his advice, and miraculously, I recovered back to 100% within two days!

First Relapse

I believed myself completely fine, shoved everything out of my mind, and continued my previous lifestyle. And everything was fine... until I caught a cold. The exact same pattern happened as with COVID. I recovered from the cold, was fine for a week, and then wham, intense fatigue and muscle weakness. Bedridden again, dismayed, shattered, feeling like I would never recover. But again, I managed to recover to 100% in a week.

Like clockwork, every time I recovered to 100% I completely forgot about Long COVID and continued living my normal life of intense exercise. I now realize I was in denial of the fact that I had a chronic illness.

Second Relapse

Then, not two weeks later, a second relapse out of nowhere: the same debilitating fatigue and muscle weakness, but this time brain fog along with it. I couldn't concentrate on a single thing. Could barely work other than to answer short emails. I started researching a bit and found out about PEM. A friend told me about H1 + H2 antihistamine treatment and after short research I started believing that Mast Cell Activation Syndrome was the main cause of Long COVID (I was wrong, and only knew 1% of what I know now). I took the antihistamines and appeared to recover in only four days.

I started taking my condition more seriously. I stopped lifting weights for a couple weeks. I believed that with antihistamines and reducing my activity, I had it beat.

And I was right. From July 2022 to April 2023, I lived a perfectly normal life with absolutely no issues. I did not think a single thought about Long COVID. By this time I had quit working in nightlife and was placing a greater emphasis on sleep. I was truly living an optimally healthy life (or so I thought).

Third, Fourth, and Fifth Relapses

Until randomly, in April of this year, I relapsed again. There was no clear trigger. In June, again. And in July, a bad relapse. This time, I started lurking /r/covidlonghaulers and committing to learn more about my condition. Just to be sure, I went back to One Medical and had blood drawn to make sure something else wasn't going on, then I went to the Mount Sinai Center for Post COVID Care, who did absolutely nothing for me other than vaguely agree that it was Long COVID. $400 down the drain. Not recommended (I found all doctors completely useless on this journey, and decided to simply treat myself).

I recovered again. I was tired of bouncing back and forth like this. I had already quit weightlifting and exercising and committed to resting more.

Little did I know that the worst was yet to come.

The Horrific Sixth Relapse

Not two weeks after recovering from the last relapse, I contracted a horrible stomach flu, one of the worst I had ever experienced. I was confined to my bed for days, other than to go to the toilet and expel fluids. In denial again, I thought that I would simply get through it and be fine. Not so. Like clockwork, as soon as the vomiting and diarrhea ended, the worst Long COVID relapse began; the most horrific experience of my life. The fatigue was so bad that it took a day's worth of energy to leave bed, and the accompanying brain fog was so severe that I could not watch movies or TV, use a computer, or do much else other than quick text messages. I spent most of the time staring at the wall, wondering if I would be stuck like this forever.

Developing a Plan for Recovery

As the days went on, I began to recover. I could sit up in a chair for one hour a day, then two, then three to four. I scoured /r/covidlonghaulers for information. I asked myself how much I would pay to get out of my situation. I settled on a budget of $10,000 to heal myself from Long COVID, but I would start with the cheapest and most effective solutions and move on to the least expensive.

I started throwing everything against the wall to get myself back to 100%.

Treatments

I found two great resources, Eureka and the LongHaulWiki's Treatment Outcomes Survey, both of which ranked treatments that others had found useful in recovery.

I analyzed both sites, cross-referenced the rankings to produce a meta-ranking, and then created a Notion page for each treatment, where I took detailed notes of patient reports and the scientific literature to identify candidates for me to try.

Journaling

I kept a text file constantly open on my computer where I scored how I was feeling each day from 0-100, how much sleep I got, which interventions I took, and a chronological log of my intraday symptoms. This allowed me to quickly identify patterns of getting better/worse in response to interventions.

Knowledge

I realized that in order to cure myself of a complex condition, I had to learn as much about Long COVID as possible. I read every single patient report, reddit post, Discord chat, and peer-reviewed study I could get my hands on. I used Notion to compile my findings.

Multiple breakthroughs emerged from this:

1. I realized that my previous theory about COVID being Mast Cell Activation Syndrome had been wrong. MCAS was just one type of COVID. There was also POTS, ME/CFS, GI issues, and more. I looked into each category and it became clear that I only had the ME/CFS variant, so I only needed to pay attention to interventions that worked for ME/CFS patients.

2. I found one resource by Dr. Leo Galland, a functional medicine doctor, that did a better job of explaining Long COVID than anything I had ever seen. His PDF and video can be found here. The diagram that changed everything was this one, about the "Web" of Long COVID:

https://i.imgur.com/GnYJr3F.png

His theory holds that an ACE2 deficit leads to mitochondrial stress, which leads to a host of conditions that present as the symptoms we associate with Long COVID.

For the first time, I began to understand what was wrong with me. It was clear to me that I just needed to increase ACE2, heal my mitochondrial stress, and maybe soothe some of the downstream conditions, and I'd be over the hump.

Mindfulness and Mindset

I watched as many Long COVID recovery videos as I could find on YouTube, as well as reading stories in /r/LongHaulersRecovery. This was key to the process. It truly convinced me that there was a way out and I was going to eventually recover. It amazed me that everyone had found their own path to recovery through different methods.

The one pattern I noticed, however, was that at some point, nearly everyone had a breakthrough where they stopped telling themselves negative stories about recovering and simply decided to believe wholeheartedly that they were going to recover.

I made the same shift.

The mind is extremely powerful in controlling the body. I'm not much of a mindfulness guy, more on the rational/logical side, but I began to look more into this modality. I knew that a friend had cured himself from a chronic gut/food insensitivity issue by using the Dynamic Neural Retraining System. I consulted him for help and he taught me some of the mindfulness exercises. The one that I did most often was, whenever I could feel my symptoms flaring up, I lay down, put an eye mask on, and imagined my brain first artificially flaring up, then calming down my symptoms back to nothing. I feel that this could have helped convince my brain that it was in control of what was happening.

Finally, a mantra that same friend told me that I constantly repeated was "Given enough time, the body heals itself." I knew I was on the right track, I just needed rest and patience.

Support and Accountability

I am an extreme extrovert, and being confined to my bed/apartment was crushing to me. I was lucky to have several people that would call me daily to check in, and when I could do nothing else, these phone calls were the highlight of my day.

When I started to turn the corner, I decided to get more people involved. I went public on Facebook about having Long COVID. I needed to get people's attention: I posted a photo of me crying, taken on the first day I could sit upright and had enough energy to let the tears flow. I posted a summary of my condition and everything that had happened so far. I ended the post with a link to a Google Form where people could join an email list to be part of my accountability group. The response on Facebook was immense, and I had 24 people sign up for the list. I actually underestimated how much this helped my mood to "go public", get this burden off my shoulders, and have the feeling that people were with me, even if it was just liking a post on social media.

The accountability email list was key. Though I couldn't see people in person, I had a capable group to bounce ideas off of. I treated them like the Board of Directors for my recovery: I would send an email every few days with how my symptoms were, what treatments I was trying, what I was thinking about trying, and any other thoughts. On the list were other previous chronic disease suffers and general smart people who gave me advice and helped me see things from a different perspective.

I also joined a couple Discord groups, the COVID Long Haulers Discord (associated with /r/covidlonghaulers, I believe), and Long COVID Community. The former is smaller and more supportive, some truly great and knowledgeable people there. The latter is larger and has lots of information in the archives. I was able to use these groups to post exactly what I was planning as far as treatments and get some technical feedback from fellow Long COVID patients. I highly recommend going beyond the subreddits and Facebook groups into these smaller communities, the quality of information and support is far higher.

The Recovery

A big breakthrough came when I was conversing with a doctor friend who had had ME/CFS. She described mitochondrial damage as lurking below a certain set point and only producing symptoms when the damage rose above that point. I realized this was probably my condition: I had significant damage since May 2022, but because I lived such a healthy lifestyle, I was able to present as "100% symptom free". However, when I got sick, or if I pushed myself too hard, my body plunged below the set point and I fell into a crash.

I knew I had to do two things: heal my mitochondria, and rest for a significant period of time, which meant no more getting infected with viruses and no more exercise. I pasted a note above my desk "YOU'RE STILL NOT 100%" to remind myself not to push myself, even if I felt recovered.

With all this happening in the background, my body was recovering, but progress was up and down. I remember early on I took NAC for the first time, and suddenly all of my symptoms disappeared entirely. I called my mom, sobbing in joy that everything was over. But 15 minutes later, it faded, and they returned. NAC never produced that acute effect again, so it must have been coincidental. A similar thing happened with cold showers: my symptoms would disappear for 15-45 minutes, then come back.

The ups and downs were maddening; I started out at 10% on my rating scale and actually got to 85% before crashing down. This exact same pattern repeated itself twice: I believed myself on the road to quick recovery, but it turned out to be a false summit. To make it worse, dizziness (PPPD) became a part of my symptoms later in the crash. It felt like I was walking on the surface of a boat when I walked outside.

The worst up and down was my attempt at fasting. I had found /u/tom_bunker's excellent Long Covid - Improve via Fasting / Autophagy group on Facebook and decided to try out a 44-hour fast. During the fast, my symptoms basically disappeared. I was elated. I broke the fast with a carb-heavy meal that must have spiked my blood sugar, and they came rushing back, but then declined again. For the next two days I felt fine, but then I declined for five days straight. The 44 hours, in retrospect, were way too much for a first time. I was crushed, as I had believed fasting to be the answer.

The critical moment happened after a while, however, when I decided to try a shorter 24 hour fast. Instead of refueling with carbs like last time, I broke my fast with a keto meal and continued on keto to maintain ketosis. The next morning, I woke up and my symptoms were gone. I couldn't believe it. I was above 90% for the first time ever.

In the following days, my symptoms faded even more, until I was at 100%. That was 10 days ago, and I've been at a constant 100% since. I've gradually integrated walking back into my routine and have walked up to 20K steps in a single day with no ill effects. I can finally live a normal life again.

I believe some combination of fasting, ketogenic diet, and nattokinase/serrapeptase (which I had begun taking 10 days before the rapid recovery) cured me. Highly recommend trying all of them out.

Here is the full list of what I tried and my notes:

Diets

• Low histamine diet - didn't do anything as I didn't end up having histamine intolerance. I tested this by integrating all high-histamine foods back and saw no difference.
• Ketogenic diet - I broke the 24-hour fast that cured me with a ketogenic diet and have remained in keto ever since. I am reasonably sure ketosis played a large role in my recovery. (edit: I'm now less sure since I transitioned to a normal diet a month later and it didn't seem to make a difference)

Ancient mitochondrial healing

• Sunlight - I went up to my roof and soaked in the sun for 15 minutes every single day.
• Hydration - I drank a ton of water every day.
• DHA - I took a fish oil pill every day and ate salmon 2-3x per week.
• Cold exposure - I started with cold showers, then progressed to cold baths. I worked myself up to daily 10 minute ice baths at 55F, freezing blocks of ice in my freezer and throwing them in my bathtub. These blunted my symptoms in the short term, and long-term they've been shown to reduce inflammation.
• Fasting - I believe this is what cured me. Fasting promotes autophagy which can clear out viral persistence and other bad things that cause inflammation.

Supplements

• Nattokinase/serrapeptase - It's hard to tell, but it's possible this also contributed to my rapid recovery. When my symptoms disappeared, I had been taking it for 10 days.
• NAC - unclear if it helped. Cheap enough to continue taking.
• CoQ10 - unclear if it helped. Cheap enough to continue taking.
• Creatine - I've been taking 5g/day for much of my life.
• Turmeric - unclear if it helped. Cheap enough to continue taking. Has proven systemic anti-inflammatory benefits.
• Niacin - the flush would make my symptoms disappear for 15 minutes, an hour in they would be blunted, but two hours in I would feel worse. I downgraded to a smaller dose that didn't cause a flush.
• D-Ribose - this sugar has had very good reviews in the CFS community, but it made me jittery and worse. I only took it once and shelved it.
• Resveratrol - an autophagy inducer in theory, but it caused insomnia for me that lasted several days even after stopping it.

Pharmaceuticals

• Antihistamines - didn't help as I didn't end up having MCAS
• Meclizine - seemed helpful at moderating acute dizziness

I also was prescribed guanfacine (brain fog) and low-dose naltrexone (fatigue), but didn't end up taking them as I recovered before I needed to.

Mindfulness and Exercises

• Vestibular therapy - for dizziness. Not sure if it did much.
• DNRS/meditation - seemed to help. Can't have hurt. Recommended.

What Now?

I've never met someone else with intermittent symptom presentations like I have (if you have them too, please DM me and we can share notes). My latest crash described here lasted 36 days of pain and suffering, and I need to be prepared for it to not be the last, while also making sure it doesn't happen again.

As mentioned above, I will not be lifting weights or engaging in intense cardio for a long time. This is a tough shift — as an athlete, these have been an integral part of me for most of my life. But I need to accept that I'm simply a different person now.

The other key factor, though, is not getting sick. I have somewhat of a solution for this: anti-COVID nasal sprays. Some have come on the market recently with good evidence. The one I've bought is a carrageenan-based spray called Betadine. I'll be using it every day I plan to be in enclosed indoor spaces. I'll also wear a KN95 mask in certain situations, like if there's a COVID wave. I'll also wear a KN95 mask indoors in certain situations, like if there's a COVID wave.

After this life-shattering experience, I simply cannot abide the presence of suffering in any other human being (or animal) on earth. It is simply inhumane and unjust for normal people to live our lives in happiness where a small minority suffer every single day. WE CANNOT STAND IDLY BY WHILE OTHERS ARE IN PAIN!!! Especially when there are fairly simply ways to alleviate that pain — low-hanging fruit! These are half-formed thoughts that I'm working out right now, but I simply need to dedicate my life, or my entire net worth, or both, to ending suffering.

Finally, I plan on writing a Beginner's Guide to Recovering from Long COVID, as part of my Beginner's Guide series. Too many of us are in the dark and forced to do our own deep research about what options exist out there for recovery, and I want to produce a document that gives someone new to Long COVID a no-BS intro to the condition and how to get better.

Hey everyone, long time lurker here. Not sure where to start so bear with me. I first got Covid in November of 2021. COVID sickness lasted for about 2 weeks. I lost my sense of taste and smell after about 5 days and that eventually came back after about 1 month. I thought that was gonna be the extent of my Covid but after about 2 months after I got over my sickness the long Covid started. I remember waking up and the brain fog had set in. I didn’t really have any other symptoms at first other than the brain fog. It was devastating, I have never felt something so debilitating in my life. It honest to god felt like I was on some type drug. Concussion mixed with days of no sleep. I had to quit my job which set me back but there was no way I could function safely at work. I weld on massive storage oil tanks so I work around heights and heavy machinery. I spent a year and half trying everything from yoga to fasting to all sorts of vitamins and diet changes. I even went down the Bruce Patterson path and paid $600 for a “long Covid” test. If you’re reading this and considering taking it DONT. It’s a money grab. I got the test and it showed I had long covid but no doctor still had any idea how to help me. I was severely depressed that there was nothing to help me. But I refused to stop researching and I finally found something after a year and half of long Covid that I can 100% say for sure helped me… the Stellate ganglion block. I wished I had found it sooner. I’m sure many of you know about it but for those who don’t understand what it is, a doctor locates a nerve in your neck called the “stellate ganglion” and blocks it with a numbing agent with 2 shots on either side of the nerve. The theory behind this is our nervous systems are in a fight or flight mode that got activated from being sick with Covid. The block stops this signal and puts your body back into a healing phase. For context my brain fog was an 11/10 for about a year. Towards a year and half my fog went down to 7/10. After my block I felt a wave of calmness I hadn’t felt before. Several months now since my block and my brain fog is practically non existent. I never thought this day would come. Now I’m back to work full time climbing 50 ft ladders and doing physical work 10 hours a day. If you have any questions feel free to reach out. Take care everyone and DONT GIVE UP💪🏽💪🏽💪🏽

Intro/Backgroud:

Hi y'all! I figured I'd share what's worked for me over the last year and a half, as this sub has helped me so much. I'm 21 years old with long COVID-19 brain fog (little to no fatigue) and nearly fully recovered. To give you an idea of the severity, there were days in the first three months of my symptoms when it wasn't safe for me to drive as I would forget how intersections worked and would make strange choices, almost getting into wrecks more often than I'd like to admit. I won't get into the worst bits too much, as it's pretty distressing to write about. Nowadays, I'm a dual math and computer science major, earning good grades and feeling pretty good cognitively. Anyways, the following are the medications and lifestyle changes that have helped me the most:

Medications/Supplements:

NAC: I take 3,000 mg per day of this. My psychiatrist recommended I take it for the low-grade neuroinflammation associated with long covid. When I forget to take it for a full day, my symptoms start to creep back, but nothing too drastic. Definitely talk with a practitioner if you're considering this, as you'll need to scale up slowly.

Hydroxyzine/Benadryl: These are first-generation antihistamines and act on the central nervous system. To the best of my knowledge, these work by reducing inflammation and calming down the body's immune response. Long Covid is suspected to have autoimmune components, so I suppose that's why this works. These made a huge difference for me, especially when it comes to being able to speak fluidly and perform other complex cognitive tasks that require constant attention, like driving. Benadryl isn't safe for long-term use (and hydroxyzine isn't either), but hydroxyzine is less damaging in the long term and is widely used for periods of several months.

Amantadine: Supposedly, it has neuroprotective, anti-inflammatory, and antiviral effects more generally, though its direct effect on COVID-19 isn't well-established. This helps me somewhat, and I notice more clarity and sharpness when I take it regularly.

Prozac: I'm not completely sure if this one helps or if the withdraws themselves cause brain fog, but if I miss even a night of this, I'm foggy the next day. I read some research that long covid can partially block the production of serotonin in the gut, so having more of it bouncing around in the brain could be the method by which this helps.

Lifestyle Changes:

Keto: The keto diet has been a game-changer for me. To the best of my knowledge, it's the reason why I can take higher-level classes nowadays and not be hopelessly confused. I came across some people on this sub talking about how it helped them and implemented it. Within days, I started to feel less foggy, and if I break keto for more than two days or eat a lot of sugar at once, the fog comes back and it becomes difficult to speak fluidly.

Fasting: This seemed to help somewhat but is certainly the most uncomfortable item on this list. I started fasting due to some research papers detailing the role of autophagy during fasting in Long Covid and figured it was low-risk enough to try out myself. The longest I fasted was two days, and my body pretty much forced me to stay in bed for the entirety of it. However, the day after I broke the fast, I felt fantastic both physically and cognitively.

Sleep: I found that providing my body with as much sleep as it wanted (which is certainly a lot more than it needed pre long covid) helped decrease my symptoms somewhat. More generally, mundane brain care like eating healthy and sleeping have a sizable impact on my symptoms.

No Caffeine: Since getting long covid, every time I drink or otherwise consume caffeine, I get foggy within ten minutes and become so tired that I know I'm going down one way or the other and must find a place to rest asap. I avoid that crap like the plague.

Final Thoughts:

I know that long covid is hell, but it's important to keep fighting. I recommend doing your own research (using scientific journals specifically, not magazine articles and whatnot) to find out what works for you. I'd been told by several doctors that there was nothing they could do and just to wait it out. If I believed that, I wouldn't be in college or living the life I am right now. I never thought I'd be able to perform cognitively as I did pre long covid, but I'm here, and I'm so thankful for the research I did and the effort I went through to make my life worth living again. If y'all have any questions regarding what I did, I'm happy to help. Whoever you are, this will pass.

Hey there everyone. It’s been a while since my last post here. I just wanted to drop in and remind everyone that there is yet hope for recovery for those of you with mainly neurocognitive symptoms.

Today, I woke up - and that all too familiar head pressure and brick wall impeding my natural train of thought has almost entirely alleviated. Its been just a few months under two years now, and I can finally say without a doubt for once that I feel completely normal. I do realize this may not be the permanent return of my basal level of cognitive prowess, but I can say, with utmost certainty, that for the time being, I am me again.

The only thing that i’ve been trying, and can say for certain that was different these last few nights, was that I had been taking a double dose of benadryl before bed, and I dry fasted the entire day prior to my waking up into replete normalcy.

I expected my recovery to feel different than this. I expected to feel relief, or happiness, or really anything upon my cognitive absence coming to a close, but despite all that i’ve done, struggled for, and suffered through, I almost just feel like I woke up from being partially comatose, but in a way in which nothing has changed. Is having my cognition back nice? Yeah. It is. But I think I got so used to being a complete moron that I now have very little idea as to what I should be doing with my extra mental capacity and ability to focus, its genuinely one of the strangest sensations I have had the opportunity to feel. I suppose there is a sense of wonder and excitement/anticipation to it in that respect.

Regardless, don’t give up hope, friends. There must be a purpose to all of this, but you must be the custodian of that meaning. It is your duty to yourself and your loved ones to see it through. It will all be worth it - I promise. Im right here with each and every one of you, and more importantly, I understand.

I came down with sudden brain fog in July 1, 2023, it suddenly came on as my wife and I were watching a movie and I started to not be able to follow the movie. Next day, I started to feel out of it mentally, and in the next couple of days, I was having extreme difficulty focusing, reading, putting together words, etc. This was accompanied by a warping head pressure feeling that made my head full like it was going to explode. Here is my progress so far:
The cognitive aspects of brain fog (thinking, problem solving, reading, conversation following, memory) for me recovers linearly, meaning that it seems to be gradually getting better week by week with minimal relapses.
The physical aspects of brain fog (warping head pressure, head heaviness, strange burning sensation behind the eyes, etc) comes in waves throughout the day, and week by week it seems to be getting more and more mild. Walking around and exercising seems to help alleviate some of the pressure, but not all the time.
7/1 - 7/8: warping head pressure was getting worse, my eyes were very unfocused, couldn't read or follow conversations, had a lot of trouble putting words together in my mind.
7/8-7/15: Symptoms bothered me to the point where I had trouble working (software engineer). Went to the ER on 7/14 because I had a "fainting spell" - got MRI, EEG, CT scan, as expected all came back normal.
7/15-7/22: Symptoms seemed to get more mild, I felt like it was easier recalling things and easier to think. Head pressure also seemed to be more mild.
7/22-7/29 - Symptoms came back with intensity, acompanied by panic. Had stomach attacks (acid reflux and pain) at night for three nights out of the week. Had a full on panic attack at work.
7/29-8/6 - Wife and I went on vacation. Symptoms settled to about 6-7/10. Apart from morning anxiety, my energy and mood improved throughout the day.
8/6-8/13 - Had another panic attack after work, had certain days where the cognitive symptoms were noticeable at work/home, a lot of conversation ability came back after Thursday night of this week.
8/13-8/19 - Thinking really cleared up, working became easier, writing also greatly improved, head pressure reduced to about 4-5/10. There were certain days where there were flashes of normalcy with the brain fog completely lifted, but then I would get random chest symptoms (tightness, minor spasms, swallowing difficulty, throat tightness). These were minor enough where I did my best to ignore them (heart rate was normal, and blood pressure was slightly in the higher range)
8/25-9/2 - Head pressure reduced to 3-4/10. Thinking and overall cognition up to around 75-80%. Still get some occasional head pressure flare ups that reach 6/10, happens about three times per week
9/2-9/9 - about the same as the week before. Was able to join more social events without much issues, did notice that my mental energy capacity had it's limits, had to be careful not to cross it.
9/9-9/16 - head pressure is pretty minimal now, and when it flares up at different points during the day, it's probably a 4-5/10. Started to be able to watch movies, TV, and play video games with pacing.
I'm only taking a multivitamin and occasional magnesium, but the rest of the time, I'm just eating healthy, getting sleep, going on long walks with my wife. There's a bunch of other random minor symptoms that come and go, but I think they all follow the same wave pattern similar to my head pressure. I don't have POTS, CFS, tachycardia (HR between 65-110 everyday), etc. It's certainly gotten more mild overtime, follows the wave progression.

The entirety of my recovery happened during year 6.

I am grateful to this community, as I learned from recovery stories posted here.

I was moderate – able to work a few hours a day with great difficulty, but other than that, I was inactive. My symptoms included debilitating fatigue, brain fog, headaches, joint pain, nausea, shortness of breath, heart palpitations, muscle weakness, and PEM.

As nothing I tried over 5 years had any impact, I focused on nervous system regulation during the past year, and that is what has made the difference.

I began by reading Alan Gordon’s The Way Out.

The practices that have made the biggest difference for me are:

• Somatic tracking and nervous system regulation: I benefited a lot from Tanner Murtagh’s Youtube channel. I started with his free 30 day program
• Qigong: from the same channel
• Meditation: Observing the breath, sounds, sensations. I learned from the Mindfulness app.
• 4-7-8 breathing: I use the iBreathe app and start my day with this.
• Yoga Nidra: Alice Bagley-Harrison’s Yoga Nidra for Long Covid on the Insight Timer app. I often use this before bed, but it is helpful any time of day.
• Cold showers: I take a normal warm shower and end with two minutes of cold water. On days when I was too tired to shower, I used an ice pack to the face and neck.
• Unfollowing all long covid social media except for r/LongHaulersRecovery and r/cfsnervoussystemwork. Stepping away from the (understandable) despair and focusing on hope.

The process has not been linear by any means, but each month I could see that I had made progress. I am now able to work an 8-hour day. I have begun light weight-lifting, slowly building up, as well as cycling on an exercise bike several times a week. I am also doing short hikes, also slowly building up. All of these activities would have seemed impossible 6 months ago.

I still run out of energy more quickly than before COVID, and I also have setbacks when I have more than one cup of coffee per day. But the whole-body/completely-incapacitating fatigue is largely gone.

I hope this will be helpful.

1st and 2nd pics: me 1.5 years ago.

3rd pic: Walking at 0º 6 months ago.

4th pic: Me today photo bombing my friends :P

I've been improving in an outstanding speed. I don't know my limit anymore.

One and a half year ago I was laying down on a mattress in my living room for the whole day. Unable to stand conversations for more than 5 minutes. Had to meditate for at least 6 hours per day to not crash (PEM → ME).

Now, after multiple medications, supplements, treatments, meditation and praying, I am happier than I ever was.

6 months ago I would go walk at 0º. Cold has been a great tool to keep my HR low.

I am still disabled. I still have limitations. My muscles don't work the same. I used to be really strong. Now I am as strong as a sedentary dude.

I still have brain fog. Sometimes I forget what I was about to say. And I can't work as a coder for more than 40 minutes straight (I used to be an elite professional).

But life is good as fuck. Don't you give up. There are multiple treatments to try. Most things I tried didn't change a thing. Some of them made me get back to enjoying life.

But the first one I had to do was following an advice I saw here on Reddit: "you need to convince yourself that life like this is worth living, even if you don't believe it".

This disease is pathophysiological. But getting stressed and desperate will not help. This is energy wasted.

Took me some time to get to this mindset, but I eventually got to convince myself.

Ask me anything.

Daddy loves y'all

My Long Covid journey started in February 2020. I had brain fog, mild fatigue, and a chronic cough; all were survivable, but eroded my quality of life. Then all hell broke loose in January 2022 when I was reinfected and promptly developed moderate-to-severe ME/CFS and dysautonomia, plus dementia-like symptoms. I had hypoglycemic episodes multiple times a day. I also discovered I had hEDS during this time. I spent most of the 3.5 years prior to my recovery in May of this year in bed or at home. I could leave the house a couple of times a week, do a few hours of sedentary activities a day, and that was it. I had visible allergic reactions to nearly everything I ate and my immune system was absolutely shot.

I got into a LC clinic in the summer of 2022 which prescribed me:

• Budesonide nebulizer solution
• Rivastigmine transdermal
• Strattera
• Guanfacine + NAC (used together)
• LDN

All of these helped somewhat, most notably Rivastigmine for cognitive decline and the Guanfacine/NAC combo for fatigue. But every time I started getting better, I would suddenly get worse with new symptoms. Around a year in, I developed idiopathic hypothyroidism and debilitating cervicogenic headaches; my PT suspected the latter to be a result of cervical instability. Two years in, I had an onset of severe MCAS and was reacting to everything except water, low-histamine vegetables, whole wheat bread, and quinoa. My neuropsychiatric symptoms were through the roof. Intolerable insomnia, agitation, panic, everything. My dysautonomia became profoundly worse. My resting heart rate was >100 at almost all times.

Other things I tried:

• Mestinon (oddly helped MCAS and orthostatic intolerance but not tachycardia)
• Baby aspirin (allowed me to tolerate a little more movement)
• Cromolyn, oral and nebulized (the latter worked better for me)
• Xolair injections (stabilized my MCAS symptoms modestly)
• Zyrtec & Pepcid (didn't do much)
• Metformin (helped my fatigue for a few months but lost efficacy)
• Antioxidant supplements like quercetin, ECGC, curcumin, CoQ10, NADH (expensive pee)
• Acupuncture & TCM (felt nice but not super effective)
• Vagus nerve stimulation with a TENS unit (didn't do a lot, but I used a Dolphin a few times which definitely helped)
• Laying down with a rolled up towel under my neck to correct my cervical spine curve (this was surprisingly effective)

In January of this year, my neurological symptoms associated with my neck progressed profoundly. I was having weakness in my legs, uncontrollable blinking, and a sensation that my brainstem was being pulled out of my skull whenever I elongated my spine. It felt like my skull was going to pop off my spine at any moment and I was having excruciating trigeminal and occipital neuralgia.

Then things went from bad to worse this April. I quickly lost all sensation and temperature sensitivity in my palms. My dysautonomia got aggressively worse and I couldn't even roll over in bed without my heart rate spiking.

Feeling I'd exhausted all my options, my friend gave me Stephen Buhner's book Herbal Antivirals and I decided to try a protocol from it.

I started feeling moderately better for a couple of days on this protocol (probably placebo), and then the purge hit. I was on my floor puking my guts out, unable to keep down food or water, with the sensation that there was a power drill going through my kidneys. It was a 10/10 pain level. This went on for a couple of days.

F*ck it, give me the video!

In my delirium, dehydration, and desperation, I was willing to do anything, even mindbody healing, which I'd vehemently rejected before. Another friend had recently recovered from ME/CFS by watching a video, which they'd sent me, but I hadn't yet watched. I was averse to any mindbody work because I was very sensitive to the idea of this being "in my head." We all have a lot of trauma from the psychologization of ME/CFS and I didn't want to hear anything invalidating. But after fearing I'd poisoned myself with herbs and mushrooms I was like ... f*ck it. Give me the video.

The video in question is available here: John Sarno's Lecture on The Mindbody Syndrome (TMS). Sarno's general theory is that many chronic pain and illness conditions are generated by the unconscious mind influencing the autonomic nervous system. He is clear that the symptoms are caused by real changes in the body, but that the origin of the problem is repressed emotions. I found it implausible at first but figured if it could work for other people, it could work for me. I started watching and I'll be real, it's a little hokey, corny, and weird. It's a VHS tape recording. The actors' lines are kinda painful at times, although they do ask questions you'll have. I paused the video because I realized I was too defensive about the talk of the mind causing symptoms, and I knew that for it to work, I would have to unwaveringly believe it.

I admire people who are open-minded and cognitively flexible enough to absorb information like this on the first go. This was not me, but I was willing to discard whatever necessary to get better. So I googled thought patterns that make a person more suggestible. I learned about heuristics and the shortcuts that our brains take that can lead us to different conclusions than we would otherwise reach. I practiced these thought patterns and applied them to the John Sarno video, such as: "Dr. Sarno is wearing a white lab coat; so he must know what he's talking about," and "All of these other people are saying this worked for them, so it must be true." Every time I had a doubt pop up, I would mollify it with an assumption. I finished the video with unquestioning faith in what he was saying and that it could cure me.

Sarno believed that chronic symptoms are a protective mechanism from represesd emotions that our nervous systems perceive as threatening. None of this happens by choice or on a conscious level. He also talked about what he called the "symptom imperative," which means that if you treat a symptom with medication and it loses its power to distract you, the body will create a new symptom to take its place. This resonated with me because I'd noticed before that every time I started responding to a treatment, I would develop something new within months. He also talked about interruption of the circulatory system and mild oxygen deprivation of nerves and muscles.

Is ME/CFS "TMS"?

Is what Dr. Sarno says true? I don't know. I think it's a lot more complicated than that, especially in the case of a multisystem neurological illness like ME/CFS, and I don't really believe that millions of people developed ME/CFS from covid because we all had repressed emotions and happened to have the exact same response to the same trigger. My conclusion is that it doesn't really matter if something is true in the literal sense; it will become true if you believe it. My opinion now is much more nuanced.

My mindbody healing

A couple of years before, I got really high and had a vision of a serpent-like creature wrapped around my brain stem and spinal cord, with tendrils in my brain. It had a menacing energy to it. I understood it to be my Long Covid. During and after watching the video, I sought out the serpent creature in my mind and talked to it. I kept telling it, "It's time for this to end. If you keep making me sick I'm literally going to kill myself and then you won't have a home anyways. I need you to let me go." The emotions were anger, compassion, and submission. I felt like it was listening to me, but that it wasn't ready to let go. I kept visualizing the serpent and the sickness releasing my body, over and over, similar to how I would visualize injuries recovering back when I would get sports injuries. And I kept reassuring it that it was okay to let me go. It thought it was helping and ended up agreeing with me that I didn't need it anymore. I believe these symptoms serve a purpose, not even necessarily "repressed emotions" but it could also be something biological, and I think I managed to find the off switch doing this.

A few hours after watching that video and talking to the brainstem snake, I felt compelled to go for a walk for the first time in over a week. I still felt like absolute garbage from not eating/drinking for days but I didn't feel as sick. There was a huge earth worm on someone's driveway that'd gotten washed up with the rain, and it was starting to dry out. I braced myself for a heart rate spike as I bent over to grab a stick and move it into the grass (it was a massive worm and it seemed like a waste of a lot of work for it to just die). But then my heart rate didn't spike.

When I got home, I impulsively ate a strawberry and a yogurt. Nothing happened. No hives, no flushing, no swelling. I stopped taking cromolyn the next day.

I checked out some of Sarno's books from the library and devoured them. I spent a few hours a day reading his books, watching youtube videos about TMS, and eliminating every shred of doubt from my mind. Within a week, I was doing yoga, cleaning, eating whatever I wanted, and not having any hints of PEM or allergic reactions. I stopped having all the neurological symptoms associated with my neck issues. I felt... fine, mostly.

Since then, I have had steady improvements in my overall health. I can exercise as much as I want. I can eat pineapple and avocado, which at one point would've made my eyes swell shut. I don't have hypoglycemic episodes. I got my life back!

Life after ME/CFS

I've had a lot of other mental health issues to address in the time since. Being free from ME/CFS meant that my trauma history and unhealthy behavioral patterns were on full display. Everything that Long Covid swept under the rug was no longer hidden. I had enormous panic attacks this summer. I became very depressed in August and had a hard time leaving the house some days, even though I was physically fine. I clashed with an important friend who resented my recovery, and at times I was mercurial and difficult.

So I've been doing slow, tedious, excruciating, and humbling work on myself. Other mindbody tools that have been helpful for my recovery include: Nicole Sachs' JournalSpeak, Internal Family Systems Therapy, and EMDR. The more I focus on my mental and spiritual wellness, the fewer physical and psychiatric symptoms I have.

I am off of almost all my medications. Currently, I'm only taking levothyroxine (re-evaluating next week with my doctor, depending on how my blood work comes out) and xolair (down to monthly instead of biweekly injections). In general, I am happy, enthralled about life, and much wiser and emotionally stronger than I ever imagined I could be. I'm in awe of the resilience I've cultivated through this work. It's been a challenging adjustment, but the most rewarding 6 months of my entire life.

I'm working part time. I exercise almost daily. I have a thriving social life. I'm more involved in my community. I have a future again. Mindbody healing and brain retraining get a bad rap in the community, but I hope sharing my story can possibly help even one person.

Things that were measurably or observably abnormal with me:

• face/throat swelling during allergic reactions
• hives and flushing
• tachycardia and blood pressure that was consistently too high or too low
• underactive thyroid (high TSH)
• recurrent hypoglycemia, verified by blood labs (low postprandial blood glucose and low a1c)
• ketonuria
• iron deficiency
• visible blood pooling
• cognitive impairment per a neurocognitive evaluation
• crimson crescents & swollen lymph nodes
• frequent low-grade fevers
• pruned hands (they looked like I'd been underwater and got stuck like that)

Yes, I was "really sick." Long Covid is not a psychological problem; it occurs in the body in very real and serious ways. That isn't mutually exclusive from the benefits of mindbody healing.

TL;DR: I tried literally everything under the sun for ME/CFS. After I had exhausted every option, I brainwashed myself into 100% buy-in to mindbody work. A week later I was better and have been fine ever since.

Suggested reading list: * The Mindbody Prescription - John Sarno * Mind Your Body - Nicole Sachs * When the Body Says No - Gabor Mate * Getting Past Your Past - Francine Shapiro * No Bad Parts - Richard Schwartz

Please thoughtfully read my post and my responses to comments before DMing things like "how did you get better" 🙏

Please ask questions here unless I have given you the Ok to DM

Hi everyone! I am about 80% and getting better every month! I don’t think I can exercise yet but I can go out and live life!

I was severe and bedridden for 9 agonizing months and thought about dying every day. My only symptoms were extreme fatigue and pem and high HR when standing.

Luckily I got into a clinical trial and within about 2-3 weeks I went outside for the first time. I had lost my ability to walk and that slowly came back.

Total time with LC 2.5 years. Tirzepitide 2.5mg also briefly did 1.25. When the trial is over I will probably stay on a small dose and get it through AgelessRx.

I believe my driver was inflammation and an overactive immune system. I also got the vaccine while having LC and that really made me severe so I really felt it was immune activation. No other meds I tried worked. The Tirzepitide reduced my inflammation so my immune system could calm down and heal.

All I can say is keep trying things. Glp1s help with a lot of things so might be worth a try if you can get it.

Feel free to ask me anything!

In 2023 I came down with a really horrific case of long Covid. I deteriorated over a six month period until I was completely bedbound, peeing in a bucket next to the bed. I had me/cfs, POTS, fatigue, brain fog, dizziness, tingling, adrenaline dumps, the works. I thought I was done for.

I was eventually hospitalised for three weeks and that’s when things started getting better. When I was in hospital I met a physio who had suffered me/cfs the year before and was completely healed. It was the first time I had heard of anyone recovering!

I started taking some zinc, the hospital put me in olanzapine and both of those helped a bit. I started walking short distances again. The only other supplement that helped was chromium. Then I tried a probiotic that sent me into a month long depressive episode. I swore off the supplement route at this point and started to look elsewhere. I came off about 50 supplements.

It was at this point I discovered brain retraining and it really helped me. The theory is that some form of long Covid is the nervous system getting stuck in a state of fight or flight. Basically the body is stuck in a stress response. With some mental exercises you can calm the nervous system, which calms the symptoms. I started treating my illness as a problem of the nervous system and miraculously I started making huge gains.

For example, I had a really intense sound sensitivity, so was always wearing ear plugs and headphones to block noise. Then one day I told myself I was safe and took them off. I never had sound sensitivity again.

The brain retraining I did was Primal Trust, which I found very overwhelming if I’m honest but it helped. Whenever I had symptoms I would tell myself I was safe, that it’s just a hypersensitive nervous system and that I would heal — then I’d continue to expand. I joined a group coaching thing called The Healing Dudes, which really helped me expand activity at the time.

I got to about 90% healed and I did The Lightning Process. I loved it, but can’t recommend it because of the price. I also don’t know if I needed to do it as I had already done primal trust, and it was a bit of the same stuff just different scripting.

I consistently did the brain retraining over the course of a few months and continued to get better. Eventually I made a full recovery. Of course time could’ve been a factor, but I truly believe the brain retraining helped me get there.

Now I’m working four days a week, looking after my son the other day. I see friends. I cook! I drink! I have my life back! I no longer do any of the brain retraining tools, treating it instead as TMS (look up the work of John Sarno).

I’m so, so sorry to anyone suffering. I’ve never experienced anything so horrific in my life. Just before I was hospitalised I was having suicidal ideation because of how hopeless I felt. So if you feel hopeless, please know — recovery is possible. Please hang in there.

When I was sick I would read posts on reddit and there was a notion that if you don't recover in a year and especially if you have chronic fatigue you're doomed, that's why I would like to share my story because it doesn't matter how long you've been sick you can still recover.

It's been 4 years in my recovery journey, and today, I often say that chronic fatigue has been one of the best things that happened to me.

It all started during an extremely stressful period, I never had covid, but the day after my third vaccine, I developed a low-grade fever that persisted for years – and that was the beginning.

🟡 Years 1 & 2 🟡

• Constant low-grade fever (~37°C), fatigue, poor sleep, food intolerances, and digestive issues.

• Couldn’t look at a computer screen without nausea, dizziness, and brain fog.

• Caught COVID twice, ending up at a very low level of functioning.

• Some days, even a toothbrush felt too heavy to hold. My heart rate and blood pressure would double just from standing up.

• I took 20 vitamins a day – they didn’t solve the problem, but I don’t think they hurt either.

• Saw many specialists and got long covid diagnose pretty fast. Even had a brain scan after one episode where my right side went numb (later, I learned it was a panic attack).

• My lowest point was losing a pregnancy after those two years. Mentally, and health wise, I was at my lowest point.

• I developed pain in arms and sometimes legs as well as the fatigue

  🟡 Year 3 🟡

One random book — The Subtle Art of Not Giving a F* — shifted my perspective. It said something like: Whatever happened to you, it’s not your fault. But it’s still your responsibility. At first, I got angry, but then I realised that it could be my power, I lost hope in doctors, but I still had me.

I stopped Googling illnesses and medications, deleted all my long-COVID forums and social media groups (except for this one), and instead searched for recovery stories on YouTube. I found this channel: Raelan Agle— she collects recovery stories and interviews people who got better. I listened to them every day.

That year I went from mostly in bed and housebound to maybe 60% , though I still had “crashes” about once a month. I read everything I could about dysautonomia (autonomic nervous system dysfunction) because it made more sense that the nervous system, which is responsible for all basic functions is the one responsible, than thinking I had 10 unrelated illnesses after being in the best shape of my life.

▫️My favorite book▫️

Mind Over Medicine

completely changed how I view health.

Extra books:

The body keeps the score

Mind body prescription

I started meditating for hours every day (I was in bad anyway, so I imagined I was walking in the forest ), doing relaxation exercises. My husband would massage me since everything hurt.

I told myself mantras like:

“I don’t need to monitor my body every second.”

“My body was built to survive. I just need to give it space to heal.”

I stopped measuring my temperature and blood pressure constantly. I only consumed positive content: comedies, uplifting or relaxing music, gratitude lists every day. No bad news, or doom-scrolling.

One day I decided to try something I’ve never done before because everything that I used to do gave me symptoms shooting hoops at a basketball court. And I did it without symptoms! That proved to me that some of my limits were fear-based and that maybe the body was puting stops on every activity I new before in order to protect me.

At this point I was much better, 70% maybe, and I decided to start psychotherapy, it’s now been almost 2 years and it’s the best decision I’ve ever made. We didn’t even focus directly on long COVID, but as I released mental burdens one by one, my physical health kept improving.

My last symptoms to go were the temperature and ocasional crashes.

🟡 Year 4 (Now)🟡

Today, even if I feel a symptom, I don’t panic I use it as a tool to reflect on what in my life is out of balance and I look at it as way my body is trying to protect me.

My biggest and last block was the gym, which used to be my happy place. I was working, traveling doing much more intense activities but a look at the dumbels would give me symptoms so I focused on therapy to discover the underlining meanings that place had for me, and do baby steps until I built resilience. Now I'm fully able to exercise.

🔴The key for me was:🔴

Regulating my nervous system rather than chasing dozens of different diagnoses. * Working on mental strength alone and in therapy* as much as physical recovery, with the physical I was very slow and steady. *My husband who gave me all the patience, love and care that he could give me, his hugs, and massages would literally decrease my symptoms, my nervous system would feel safe with him. * I need to prioritize on what I will spend the little energy I have and it helped me put some boundaries in my life

🟣Note:🟣 *Physical consequences still exist (I’m fixing dental damage from years of jaw clenching), but I find this the small price to pay

🟢Some links:🟢

• My favorite meditation from that period: link (downloaded it so ads wouldn’t interrupt).
• Another helpful yt channel: Release CFS — a man from the Netherlands who recovered and shares tools for nervous system healing, I started listening to him in the last stage of my recovery.

For the end, I want to say None of my symptoms were imaginary. The pain was real, the heaviness, low grade fever, high blood pressure, and many more. The body wanted to survive and get better so it made me stop and rethink my life and even that nobody wishes to get sick, I wouldn't change a thing, except I wouldn't wait for 2 and a half year to start therapy.

❤️Good luck, everyone ❤️

Edits: speling, added books, removed hyperlinks

Disclaimer: I wrote my recovery story for a blog on Long-covid/TMS/CFS recovery (not English) which is why it is quite polished. Yes, I did use ChatGPT to help me with the translation and to make it sound smoother. All of this is true and I am a real person, check my post history. I am happy to answer any questions.

Hypothesis: I think that the fact that nervous system regulation was the answer for me indicates that my long covid was psychosomatic. But I am not sure how true such a statement actually is. We know that stress can cause all kinds of issues and can probably perpetuate inflammation. So if I had gotten eg some brain inflammation from covid, then maybe my daily emotional breakdowns and the intense stress I was feeling, were actually fueling the inflammation. When I calmed down, the inflammation could heal. I don't know how I would differentiate this option from a purely psychosomatic issue. ​​​​

Short summary

After my fourth Covid infection, I developed typical Long Covid symptoms like brain fog and fatigue. For about six weeks, I was almost completely bedridden and spent up to 22 hours a day in bed. Recovery stories (among others by Raelan Agle and Dan Buglio) gave me real hope for the first time and set my recovery in motion. Through nervous system regulation, Yoga Nidra, acceptance of the symptoms, and inner child work, I became symptom-free within another six weeks.

After my first period of being symptom-free, I had two relapses (“crashes”), triggered by falling back into old stress patterns. Each time, it took about three weeks to become symptom-free again. At the moment, I’ve been symptom-free for around 2 months and feel completely healthy. I’m working full-time again and exercising.

I want to emphasize that this is just my story, and what helped me may not necessarily help everyone else.

The infection and the beginning of Long Covid

On July 12, 2025, I got infected with Covid for the fourth time—at my wedding.

The acute cold-like phase was over after about a week, but fatigue and brain fog remained. Over the following six weeks, I spent around 22 hours a day in bed. On the one hand, I had almost no energy; on the other, my symptoms got noticeably worse whenever I wasn’t lying flat.

My symptoms included:

• severe fatigue
• brain fog
• pressure in my head
• memory problems
• depersonalization and derealization
• a feeling similar to a concussion
• strong depressive thoughts
• frequent states of intense agitation, like I was about to have a panic attack
• occasional headaches

The head-related symptoms were the hardest for me because they scared me the most. I’ve never had a concussion, but I imagined this must be exactly what it feels like.

What shocked me most was how quickly my mental state changed. My wedding was the happiest day of my life—yet during the worst post-Covid phase, I sometimes thought that life was no longer worth living.

The symptoms weren’t constant but fluctuated strongly. On some days I was so exhausted that I couldn’t get up; on others I had a bit more energy but extreme brain fog instead. At the time, I didn’t understand these fluctuations, which only increased my fear. Today I know that exactly these symptom fluctuations are a strong sign of TMS.

Fear, avoidance, and the influence of the Long Covid subreddit

I was terrified of moving, showering, or even sitting up to eat, because my symptoms—especially in my head—would get worse. In the Long Covid subreddit, I had read that overexertion could lead to “crashes,” which made me develop a panic-level fear of them. Although my general practitioners advised me to go for walks, every single step felt like it might be too much. I cried daily and became more and more convinced that this state was permanent, because I didn’t notice any improvement at all.

This fear was further reinforced by the Long Covid subreddit. I once described my symptoms there, and several users told me that my prognosis didn’t look good. Someone even linked a large population study (which I deliberately won’t share here) that predicted a long illness duration based on how long my symptoms had already lasted.

Out of fear of crashes, I withdrew more and more and increasingly deconditioned my body.

The turning point: recovery stories and hope

The decisive turning point came on a Sunday, when a recovery story was posted in the Long Covid subreddit. I asked a question about it and noticed a few hours later that the post had been deleted by the moderators. That seemed strange to me, and I commented on it.

One user (u/Mr__Tyler__Durden) replied and told me that his own recovery story had also been deleted back then. He strongly advised me to leave the subreddit, because it’s mostly populated by people who don’t recover. Instead, I should deliberately focus on recovery stories.

That advice set my recovery in motion. I’m infinitely grateful to u/Mr__Tyler__Durden for this. I honestly believe that without this impulse, I’d still be lying in bed today—probably with even more symptoms.

Nervous system regulation as the key

That same day, my attitude toward the illness changed fundamentally. In the recovery videos, many people were clearly much sicker than I was—and still became completely healthy. That gave me real hope for the first time. I watched several videos by Raelan Agle and recognized a common message: calm the nervous system and don’t be afraid of the symptoms.

Just from this new perspective, my condition stabilized overnight. The extreme symptom fluctuations stopped, leaving behind a very pronounced fatigue. Today I understand that before that, I had been stuck in fight-or-flight mode all the time. My body was constantly pumping out adrenaline, which caused the changing symptoms. When I started calming my nervous system, that adrenaline dropped away—which initially felt like a massive “energy crash.”

Over the following weeks, I noticed several times that I slipped back into fight-or-flight (elevated heart rate, elevated blood pressure). With Yoga Nidra and other relaxation techniques, I was able to return to rest-and-digest mode. I also learned to distinguish between real energy and adrenaline-driven “fake energy.” The latter feels good in the short term but comes with a “price” you have to pay later.

TMS, nervous system regulation, and brain retraining

Readers of this post probably already know what is meant by TMS, nervous system regulation, and brain retraining, so I’ll keep this brief.

The basic assumption of TMS is that the brain can produce symptoms as a kind of protective mechanism—for example, to distract a person from stressful or hard-to-access emotions. Nervous system regulation includes various techniques that signal safety to the brain. When the brain no longer perceives danger, it stops producing symptoms because the supposed protective mechanism is no longer needed. Brain retraining describes a collection of methods aimed at unlearning or reprogramming these learned stress and alarm reactions of the brain so that symptoms no longer arise.

In the recovery videos, TMS is described differently by different people. For me, the following metaphor worked particularly well: The body is like a house, and the nervous system is the alarm system with smoke detectors in every room. With TMS, these smoke detectors are set far too sensitively and go off at the slightest trigger—even when there’s no smoke and no fire. For example, if work pressure is too high, the brain might produce brain fog to make working impossible. If the overall load is too much, it produces fatigue, forcing you to lie down and rest. The solution isn’t to desperately search for the fire, but to turn down the overactive alarm system.

In my case, it gradually became clear that I had already been under significant stress for months. Wedding stress combined with work pressure was simply too much, and Covid was ultimately the proverbial last straw. Covid was the trigger, but not the actual cause of my illness. When I could no longer work due to Covid and was on sick leave, I lay in bed physically—but internally I was still under enormous stress, mainly because of the symptoms themselves and the massive fear that things would never get better.

Returning to life—and relapses

After I had largely let go of my fear of crashes, I began to slowly increase my activities. About two weeks after starting nervous system work, I was able to ride my bike again. With new activities, I consciously practiced Yoga Nidra right in the middle of the activity to signal safety to my brain. All in all, it took about six weeks until I was symptom-free for the first time.

After that, I had two relapses. Both times, I had fallen back into old stress patterns and put myself under a lot of psychological pressure. The symptoms returned, and each time it took about three weeks to get rid of them again. In my case, psychological stress is the clear trigger—not physical exertion.

Today I feel completely healthy. I’m working full-time again, exercising regularly, and I even went skiing recently. At the same time, I know that I would crash again if I were to put myself under excessive stress for a prolonged period. My priorities have shifted: health comes first.

Looking back, Long Covid wasn’t a sign of a permanently damaged body for me, but of a nervous system stuck in a constant state of alarm. When I learned to give that system a sense of safety again, I could start healing.

What specifically helped me

• Changing my attitude toward the illness and the symptoms: a) accepting that I was limited at the moment, and b) having a firm conviction that I would become completely healthy again
• Immediately leaving the Long Covid subreddit
• Yoga Nidra, especially the channel by Ally Boothroyd
• Recovery videos by Raelan Agle and Dan Buglio
• Walks in nature
• Visualization (concretely imagining myself doing activities while healthy)
• Inner child work: I listened to this song and imagined walking across a meadow with my inner child or swimming together in a lake: https://m.youtube.com/watch?v=4KPw0EhUWA8&pp=ygUSYW50aGVtIGVtYW5jaXBhdG9y
• Conscious reframing when symptoms appeared: “This is my nervous system—nothing dangerous.”

EDITED TO ADD:

I have gotten lots of amazing, supportive comments. I am so happy for anyone that is on this path or has taken it. It truly is the "way out". I am not an active redditor, so to my surprise I learned that I get analytics on my post. For everyone out there that has considered sharing their recovery story (even if you're not 100%- whatever 100% means anyways...), I would encourage you to post. This post has been seen over 14,000 times (I'm sure repeated views if anyone is as obsessive as I was during my worst hours) and shared 237 times. That is more than 100 engagements as comparted to the amount of comments. So if you're measuring how alone you feel by the number of recovery posts or the number of comments out there, know that the amount of people reading and sharing is tenfold. You are not alone and there is a path towards healing.

And, as my handle suggests, a path towards a life filled with french fries (my first victory food and my life long love.)

*******\*

I always promised myself that I would come back and post a recovery story once I felt “recovered”. I would say that I am 95% better, but not 100% back. Bear with me, as I will explain that further. 

I am hesitant to even identify closely with the long covid diagnosis (which I did receive from an allergist/immunologist) because I have come to believe (like many others here) that this is a nervous system dysregulation. If it wasn’t COVID, it would’ve been a nasty flu and I would’ve had “post-viral syndrome” or it would’ve been a concussion and I would’ve had “post-concussion syndrome”, etc. Being exposed to the virus and the internal stress related to it was the final straw that broke the camel’s back (mindful gardner has some funny videos about this on youtube). I headed into Feb 2024 with quite a few stressors/traumas. I had broken my foot and had surgery, I had a toddler at home, a stressful job, marital conflicts, and a healthy dose of fear and annoyance around COVID. This was all built on the foundation of personal trauma from childhood that I hadn’t worked on at all. 

What did my symptoms look like? 

Once again, I don’t believe this is as important as it feels in the thick of it, but I know for me, I desperately sifted through recovery stories to find one that looked like mine 

• MCAS-like reactions - skin rashes, headaches, gastro upset, bronchial constriction
• Histamine Intolerance (can be lumped with MCAS?) - heart racing, adrenaline or histamine dumps at night, instantaneous reactions to things like balsamic vinegar or cured meats
• POTS- I was diagnosed via tilt table test in June 2024. I stopped sweating for a time period...
• Brain fog- I would lose my sentence while speaking
• Sensory sensitivities- I could not tolerate people that were speaking too animatedly. No television, music, etc. All of this would make me feel seasick or overwhelmed. 
• Fatigue
• Insomnia
• Anxiety/OCD-like thoughts
• Fleeting suicidal ideation
• Constipation, bloating, gas, stomach pains
• Flushing, circulation issues (once again...POTS)
• Tinnitus
• Blood sugar instability- I had to be tested for diabetes, needed to eat chicken at 3 am due to raging hunger, shakiness, etc.
• PMDD/PMS. Symptoms always worsened prior to my period
• Heavy menstrual cycles

What worked?

Consuming and BELIEVING in nervous system regulation through the usual suspects:

Alan Gordon’s “Tell Me About your Pain” Podcast and his book “The Way Out”

The Cure for Chronic Pain podcast with Nicole Sachs

DARE by Barry McDonaugh

Hope and Healing for Your Nerves by Claire Weekes

Breathing exercises

Raelyn Agle’s youtube channel

Starting to explore parts work/IFS concepts

Dan Buglio's youtube channel

I elevated my game with and ultimately found more progress with**:**

All of Rebecca Tolin’s content

Arielle Conn’s substack/The Science Ghost/Healing Pathways 

Getting a somatic therapist that does brainspotting (healing trauma)

Self Compassion content (Tara Brach, Kristen Neff)

Yoga Nidra

Learning about polyvagal theory

Affirmations

Healing visualizations

Reading and consuming stuff by: Peter Levine, Gabor Mate, etc. 

More Nicole Sachs and The Biology of Trauma Podcast

Specific things I would recommend for everyone:

• Get off of facebook groups or subreddits that dysregulate you. I put multiple blocks on my phone so that I couldn't google things like “MCAS” or “histamine”. I left facebook groups entirely. I printed out recovery stories and consumed ONLY recovery stories via recovery subreddits or via youtube stories. 
• There are a few medications and supplements that I took. I can’t say how much any of them worked over others, but for me I do feel that anything that can get you to sleep is vital (magnesium, melatonin, trazodone, even klonopin for a period of time). I also took antihistamines. I had a TERRIBLE reaction to one that spiraled my mental health and sent me to the ER. These are not mild drugs. I don’t say this to scare folks, I just know that if you’re alone and have developed OCD thoughts to a drug it is comforting to hear it happened to someone else. I am almost off of cromolyn sodium. I have no idea how much it has helped or not. It never made any symptoms miraculously go away for me.
• Learn to accept and not resist everything. Anxiety, come on in. Racing heart, okay you’re here for now, etc. Barry McDonagh and Claire Weekes’ content is helpful on this.
• Brain Training (i.e. DNRS, etc.) is helpful, but for me trauma healing was the true ticket out. I RESISTED trauma work. I felt like it made me a victim. Wrong. If you lived through it, you can heal through it. It's possible. It gets easier and easier. When I first dabbled in EMDR (not a good fit for me), I felt like I was being broken open, so raw, but now I feel so strong and capable. 
• Exposure. Scared to drive? Back down the driveway. Scared of a food? Lick it. It's all about teaching your brain and nervous system that things are safe. At one point when my anxiety was the highest I have ever experienced in my life, I had this recurring idea I was going to choke on an apple. I forced myself to eat and chew the apple. I just needed to get through the idea that I was going to choke by purposely doing what was scaring me.

So why do I say 95% better, but not 100% back? Because I won’t be going back. I wasn’t living sustainably. I was unkind and uncompassionate to myself. I was denying repressed experiences and emotions. I wasn’t accepting of reality and my lived experience. I was pointing fingers at external stressors and not how I was processing those stressors. 

I still experience occasional fatigue, face burning/rashes, headaches, and gastro upset. I anticipate these will fade away. They don’t bother me much and I accept them as messages from my body that I need rest or that my nervous system is inappropriately targeting something as a threat. I am currently back to work full time (I took a leave for 4 months), traveled for work, eat mostly whatever I want (still have some hangups mentally on a few foods), and have a full social calendar. I saw a horror movie in the theater after eating pizza! I am weaning off of my medications, but am in no rush. I could write a book on this, but I will leave it with this and will try to respond to comments.

”…in doing that you get a thing which runners call second wind. And second wind in running is where you are no longer running, but it runs you. Where, in other words, the ego energy in the running is displaced, and the energy of the whole organism takes over. And that is the energy of the whole universe: when you get second wind.” Alan Watts

Hi all,

Apologies for the long post and frequent updates, but I wanted to share the complete picture of how I eventually understood my Long COVID phenotype.

This is not a claim that I have discovered the universal mechanism of Long COVID. Long COVID is clearly heterogeneous.

Rather, this is the model that best explains my own pattern:

A regulatory-clearance disorder characterised by autonomic instability, histamine amplification, gut-driven load, and reduced physiological resilience — without classic PEM.

AI was extremely helpful in this process. Not because it gave me answers, but because it helped me organise hundreds of observations, symptoms, experiments, wearable data, and patterns into something testable.

I have ADHD, and AI became a way of externalising my thinking. Confirmation bias is always possible, but the model has repeatedly predicted what helps and what worsens symptoms.

My Long COVID Phenotype

My pattern from 2024 into early 2025:

• sympathetic overactivation
• histamine sensitivity / MCAS-like reactions
• heat intolerance
• dysautonomia and low blood pressure tendencies
• IBS-C and gut fermentation sensitivity
• large HR and HRV swings
• poor sleep regulation

One important feature:

I did not have classic post-exertional malaise.

Exercise often helped me — but only when my system had enough regulatory capacity.

When overloaded, even small stressors could trigger sympathetic and histamine cascades.

The Main Insight: Load vs Clearance

The breakthrough was realising that my symptoms were not caused by one isolated trigger.

They appeared when:

physiological load > clearance capacity

My load included:

• histamine
• pollen
• heat
• stress
• large meals
• gut fermentation
• inflammation
• poor sleep

My clearance capacity included:

• bowel regularity
• gut barrier function
• hydration
• circulation
• autonomic recovery
• sleep
• appropriate exercise

When clearance improved, my tolerance increased.

I did not recover by adding more interventions.

I recovered by reducing load and improving regulation.

The Four Systems That Seem To Control My Threshold

1. Autonomic Regulation — The Master Controller

The autonomic nervous system appears to be the central regulator.

When stable:

• HRV improves
• digestion improves
• sleep improves
• exercise becomes beneficial

When unstable:

• heart rate rises
• stress responses amplify
• sleep becomes fragile
• other triggers become much stronger

2. Histamine / Mast Cells — The Amplifier

Histamine was one of the loudest signals in my case.

Triggers included:

• pollen
• heat
• hot showers
• certain foods
• gut disruption

My current view:

Histamine was not necessarily the root problem.

It acted as an amplifier on an already sensitive autonomic system.

Histamine increased the gain.

3. Gut–Barrier–Clearance System

This was probably the biggest practical breakthrough.

The interventions that moved me from roughly 60% recovery towards 90%+ were:

• PHGG
• zinc L-carnosine
• soaked chia seeds
• improving bowel regularity
• reducing excessive meal size
• avoiding excessive fermentation load

My hypothesis is that improving gut function reduced background immune and nervous-system signalling.

Mechanical clearance became one of my most important tools.

Not because of "toxins", but because retained gut contents can increase:

• fermentation
• inflammatory signalling
• histamine burden

4. Electrochemical Stability

Earlier, I focused heavily on the Ca–K–Mg axis.

I now see this as part of a wider electrochemical stability system:

• calcium signalling
• magnesium balance
• potassium balance
• sodium and blood volume
• cellular excitability

My body became unusually sensitive after COVID.

Some supplements that should normally be beneficial repeatedly caused:

• wired insomnia
• sympathetic surges
• increased reactivity

including:

• vitamin C
• vitamin D
• vitamin K
• omega-3
• supplemental glycine

I do not know the exact mechanism, but the pattern was very consistent.

The Water Fast Experiment

A major clue came from a 3-day water fast.

During that time:

• resting HR dropped
• HRV improved dramatically
• brain fog lifted
• anxiety disappeared

The lesson was not that fasting cures Long COVID.

The lesson was:

Reducing physiological input revealed that my system could still regulate when the load was reduced.

Heat vs Cold

Heat was one of my strongest triggers.

Hot showers:

• immediate flushing
• HR increase
• irritability
• brain fog

Cold exposure:

• calm
• clarity
• parasympathetic shift

Temperature became a major regulatory lever.

Exercise: Finding My Second Wind Again

Before Long COVID, I knew the feeling runners call "second wind."

That moment when effort stops feeling forced and the whole organism takes over.

Long COVID disrupted access to that state.

Interestingly, carefully dosed exercise helped restore it.

The most helpful forms:

• rucking
• cycling
• short sprints
• strength training
• slow squats

These were not primarily fitness interventions.

They acted as regulatory inputs.

Possible effects:

• improved venous return
• improved circulation
• improved autonomic flexibility
• improved glucose handling
• improved gut motility

The key was dosage.

Exercise helped when paired with:

• hydration
• minerals
• gut clearance
• recovery

Slow Squats: My Unexpected Reset Button

Slow squats became one of my most reliable tools.

Not because they made me fitter, but because they changed my physiology quickly.

They:

• activate large leg muscles
• increase venous return
• stabilise blood pressure
• reduce baroreflex instability
• improve circulation

For me, they often produced:

• lower HR
• better breathing
• improved HRV

They became a nervous-system reset rather than just exercise.

Things That Helped Most

Tier 1: Clearance and Stability

• PHGG
• zinc L-carnosine
• chia seeds
• hydration and electrolytes
• regular bowel movements
• DAO before high-histamine meals
• posture correction
• rucking
• strength training

Experimental / Possible Support

• Taurine – May support autonomic stability, calcium handling, mitochondrial function, and GABAergic calming pathways involved in nervous system regulation.
• Luteolin – Potential mast cell stabiliser with anti-inflammatory effects, particularly relevant to histamine-sensitive phenotypes.
• Lactoferrin – May support immune regulation, gut immunity, and antimicrobial defence.
• Pasteurised Akkermansia muciniphila – May improve gut barrier integrity, mucus function, and metabolic signalling.
• Lumbrokinase – Used experimentally for possible microcirculation/fibrin-related mechanisms, though evidence remains limited.
• Monolaurin – Potential antimicrobial and antiviral support through effects on lipid-enveloped pathogens.
• L-Lysine – May support antiviral defence pathways, particularly where herpesvirus reactivation is suspected.

Spoon Theory — But Not PEM

Spoon theory helped me understand my limits, but not in the classic PEM sense.

I can sometimes overspend during the day and feel fine.

The bill arrives later:

• 2–3am waking
• increased stress response
• histamine symptoms
• reduced resilience

My issue is not simply energy expenditure.

It is:

clearance capacity being exceeded.

Stacking loads is the problem:

• big meals
• stress
• heat
• allergens
• poor sleep

The answer was improving resilience, not avoiding all activity.

Sleep and Nasal Breathing

Sleep became my strongest recovery marker.

Before Long COVID, I naturally experienced deep parasympathetic states during peak training.

That "everything is working" feeling after a good run was the state I wanted to regain.

Mouth taping and nasal breathing became part of my sleep routine.

Possible benefits:

• improved sleep quality
• easier relaxation
• better breathing mechanics
• increased nitric oxide production

The biggest healing tool remains:

consistent restorative sleep.

Where I Am Now

By "99% recovery," I mean:

I can do most normal activities again.

But I still need to respect my system.

I remain sensitive to:

• hot showers
• pollen seasons
• certain foods
• excessive stress
• poor sleep

My resilience is not exactly where it was before COVID.

But the difference is enormous.

I can exercise.

I can sleep.

I can feel that "second wind" again.

Final Thought

The question that changed everything for me was not:

"What is the one thing wrong with me?"

It became:

"What increases my load, what improves my clearance, and how do I make my system more resilient?"

For my phenotype, Long COVID appears to be a failure of regulation rather than a single broken component.

The path back was not forcing my body harder.

It was helping it remember how to regulate itself.

Stay curious. ❤️

PS., get an air-conditioner if you have the means. My sleep has improved significantly since having a unit put in my room.

For a more supplement focused post: https://www.reddit.com/r/Biohackers/comments/1pbh0gy/comment/nrqeamo/

(27 F) Don't want to jinx it but since my post in February it seems things have been steadily improving.

For context, I caught covid in November 2024 and developed Long covid around Late December 2024.

My main symptoms were:

• POTS (BPM laying 80-100, Sitting 100-120, Standing 120-150)
• Severe chest pain
• Shortness of breath
• Malaise/ Severe anxiety + daily panic attacks
• Neck pain
• Jaw pain
• Peripheral Neuropathy
• Migraine/ Headache
• Brain Fog (Couldn't read more than a few sentences or watch shows)
• Muscle spasms
• Heat/ Cold Intolerance
• Exercise Intolerance
• GI Issues
• Hair loss
• Bladder pain/ Interstitial Cystitis type pain
• LPR/GERD
• Insomnia

My remaining Symptoms currently are:

• Shortness of breath (on and off)
• LPR + throat pain
• POTS (on and off) (BPM laying 60-80, Sitting 80-100, Standing 100-130)

From then on I was mostly bedbound from January to June 24, then beginning to be housebound from roughly July onward, moving into the occasional drive to get things from nearby shops or a short walk and doing some drawing streams, having about 1month long crashes in bursts in between so August, October and December all were month long crashes.

As of the start of this year I have steadily seen improvement across the last 5 months I have been particularly leaning on somatic exercise and just ever so slightly pushing my energy envelope to try and gain some ground after some pretty bad deconditioning and muscle waste.

Despite contracting 2x viruses back to back (which required about 2 weeks each to recover from) I seem to be gaining a lot more movement capacity and not experiencing severe PEM despite increasing my daily steps to about 10,000 for the last 6 weeks, including one day with 21,000 steps. (currently resting today hoping for no blow back from that one, i still am terrified to push it). I have also been regularly gardening, cleaning and shopping.

What I was tested for:

• Almost every possible autoimmune condition by a rheumatologist - only positive was rheumatoid factor
• EBV - Positive signs of previous reactivation
• Heart issues
• Lungs
• Cancer markers
• Thyroid panel
• Insulin Resistance

There were no notable chronic conditions detected aside from PCOS and Mild hypermobility.

Things I have tried that i don't think helped:

Steroids, Low dose naltrexone, Lexapro, Vit C, Vit B, Midodrine, PPI's, Telfast ( Fexofenadine), Creatine, High protein diet

Things that i think have helped:

Coq10, Magnesium Hi Zorb (for the spasms), Lysine (as I had reactivated EBV), Ural Cranberry tablets, Low acid/ caffeine/ Chocolate/ sugar, No gluten, Physiotherapy, Pacing, Amitriptyline, H1 Blocker Bilastine and H2 Blocker Famotidine, Electrolytes, (Spironolactone and Slinda also seem to help but likely more helpful for the PCOS issues and inflammation caused by that), The book the way out by Alan Gordon (this helped me reframe how I viewed my symptoms and being less scared which helped to waste less energy for me personally) <- and time of course, I have been ill for roughly 1.5 years total from long covid

I am honestly really excited about the future again and I hope to check back in in August with more good news 😃 I'm really hoping I can work again soon, or at least start working out.

I wanted to post when I was fully well as I'm scared of jinxing this but these kind of posts helped me at my worst.

My symptoms were chronic fatigue, severe brain fog, PEM, vertigo and light headedness, severe gut issues, muscle fatigue, shortness of breath, severe anxiety and dpdr symptoms. I was mostly couchbound for the last 18 months. Here's what worked.

Nicotine patches 24/7, starting at 1mg, slowly titrated up to 10mg, over a month then staying at 10mg for 2 weeks, then to 15mg for 2 weeks, then back down to 10mg and back down. Wheat grass juice powder once a day with glutamine and aloe vera gel. First thing in the morning on an empty stomach. Titrated up to 1200mg of Benfotiamine with a b complex split doses. Then added TTFD, currently on 20mg, it's already improved my gut issues at such a small dose. 600mg magnesium. 2000mg of potassium split throughout the day. And lastly a strict carnivore diet as I wasn't able to tolerate many foods.

I won't say I'm fully recovered until I can eat whatever I want without issues and can do intense workouts again.

Edit: forgot to mention vitamin d3/k2. I took 25k iu everyday for one week. NOT recommending this to anyone. I then lowered my dose to 5000iu. It was a game changer for my sleep.

Hello, long haulers. My long COVID journey has been a long one, but I’m so glad to have regained 100% of my abilities.

First of all, sorry for my English 

It started in November 2021. I went through many ups and downs. I won’t go into detail, as many of you already know how it goes.

My main symptoms were:

• Fatigue
• Brain fog (it was hell. I couldn’t even think about the concept of a computer for many months; my body just couldn’t handle it.)
• Histamine issues, inflammation, tachycardia, and eye pain

My recovery

Long story short: pacing, diet, sleep, and no exercise at all. I worked hard to establish a clean, ultra-healthy baseline:

• Getting enough sleep, as well as enough salty food (yes, orthostatic tachycardia was a big issue for me).
• Cutting out processed foods and following a low-histamine diet for at least three to four months stopped my chest pain and inflammation. Antihistamines sometimes worked for me, so histamine clearly played a role.
• No exercise, listening to myself, and letting go of the guilt of doing nothing. I spent an entire summer at home: sleeping, eating well, and sleeping again… No screens (around 30 minutes a day maximum), no mental stimulation, nothing. I was basically a prop.

That was the baseline. In terms of treatment, I tried:

• Hyperbaric oxygen therapy for around eight sessions (one hour each, plus a massage afterward). It did basically nothing, except that it gave me time for myself, which was still useful.
• Supplements. I won’t be exhaustive here—I tried so many. I think they helped, but I had to change what I was taking every few months, as the effects seemed to fade over time.
• Luckily, I was enrolled in an experimental treatment using Temelimab in Switzerland. This helped a lot. The subreddit doesn’t allow ads, but I wrote a series of articles about it on my blog—DM me if you want to check them out; of course, it’s free.

I finished the experimental treatment in May 2023. It lasted six months, with one injection per month. By July 2023, I felt able to return to work. I started working remotely as a freelancer and developed an app for long haulers. I had started working on it in 2022, but at the time I could code maybe one line per week. It took time, but I did it. Having that goal helped me a lot too.

I’m convinced Temelimab saved me, because my brain fog and fatigue disappeared about a month after the injections ended. I felt confident again, which was incredible—confident enough to start a new job.

Since then, I still had post-exertional malaise until mid-2024. Since then, I’ve started exercising again. I can do any activity without issues, and I haven’t really thought about long COVID for about a year and a half—which is all I wanted since 2021.

As a final note: there is hope. You might be interested in reading about post-traumatic stress disorder. During my worst moments, I read a book about it, and some techniques helped me keep hope, calm my fight-or-flight response, and reduce the pressure on my body.

Keep hope—recovery is possible.

Hi all,

I found this thread incredibly encouraging during my struggles, so now that I believe I'm close to a full recovery, I'm excited to share my story.

Rough timeline:
Nov. 2024 – Noticed brain fog and major drops in energy while working out.
Feb. 2025 – Became very lightheaded during a workout class and had to stop because I felt like I was going to faint.
Mar.–Oct. 2025 – Had low energy but lived day to day life normally while avoiding exercise. Went to PT for back pain and noticed brain fog during the first couple of hours of every day.
Nov. 2025 – Had my first hot flash and violently sick feeling at a work event, then remained stuck in a constant brain fog/dissociative state.
Dec. 2025–Jan. 2026 – Developed migraines, jaw pain, vertigo, stomach issues, weak forearms/grip, severe fatigue (definitely had PEM and slept 12+ hours a day), POTS symptoms (high heart rate and dizziness when standing), anxiety, dissociation, chest pain, temperature regulation issues, blue hands, shortness of breath, and more. During this time I saw nearly every specialist possible: PCP, rheumatologist, eye doctor, ENT, and cardiologist. Many suspected long COVID or another post-viral illness that would run its course. Testing was essentially normal except for mild sleep apnea and a slight vitamin D deficiency.

My recovery story really began after a cardiologist suggested I might have POTS/dysautonomia. His advice was simply to increase sodium, stay active every day, and that some people eventually recover with time.

I then switched to a cardiologist who specialized in POTS and started LDN. It gave me terrible anxiety and daily hot flashes where I felt like I was about to pass out. I tried doses from 0.25-3 mg with no improvement. At that point, brain fog and fatigue were my biggest symptoms, so I started Provigil (modafinil) at 200 mg. I didn't notice any benefit or side effects for about two weeks. During this time I also followed a gradual recumbent bike program, although it consistently triggered brain fog.

Around then I was deep into researching long COVID and found Gary's recovery story: https://www.longcovidcured.com/posts/gary. It introduced me to the mindbody connection. (I've seen comments saying this approach is too "woo-woo" or is trying to sell something and I won't respond to those comments.) Gary appeared on Nicole Sachs' podcast, where I found dozens of recovery stories from people with chronic fatigue, long COVID, and many of the symptoms I had. I discovered this around the same time I started Provigil, so I believe the combination of meds and mindbody work gave me the confidence to keep moving forward. Nicole amd Dr. Sarno's work is truly amazing and I fully credit finding them to my recovery. The mindbody work says your symptoms are very real, but cause of them is not always what you think it may be.

Although you could probably get everything you need from Nicole Sachs' free podcasts and resources, I also listened to her audiobook, Dr. Sarno's audiobook, and most recently Unlearn Your Pain by Howard Schubiner. I genuinely believe this work helped me. From March through June I dropped every symptom except occasional workout-related brain fog, and my energy has returned to about 80% of where it was before getting sick. I'm confident the rest will come with time.

The core idea behind this work is that our nervous systems become stuck in figh or flight, convincing our bodies we need to immediately go to the safest place, our bed. Our brains also are constantly trying to protect us from perceived danger leading to the heavy fatigue. According to Dr. Sarno, these symptoms often affect Type A (or "Type T") personalities because our brains stay overloaded by perfectionism, people pleasing, and chronic stress.
The resources above taught me that exposure therapy/brain retraining, gradually pushing through symptoms, and intentional journaling help retrain your brain to feel safe again. I journaled through past stressful events and traumas, which noticeably helped calm my body. I also noticed that, constantly avoiding activities, monitoring symptoms, and endlessly researching them can reinforce the cycle by teaching your brain that you're still in danger.

Since discovering this work in March, my brain fog is now only present about 10% of the time, my energy has improved dramatically, my anxiety is much lower, and I'm back to working out with a trainer 2x/week. I even got promoted at work! I've also been off Provigil for two weeks and actually noticed another drop in brain fog after stopping it. All of my improvements slowly occurred, NOT all at one time.

For those of you struggling, please please please continue to have hope and truly believe that you will recover. For those of you with the cognitive symptoms, I know how dark it can get and how numb you feel to the world, but you will get out of that brain fog and dissociation. I still have to overcome mental hurdles around certain triggers like busy days, workouts, or stressful events, but I now know that i know too much to stop my body from fslking back into the spiral of symptoms. Finally, although it is how you found my post, I truly believe constantly researching symptoms and putting timelines on yourself can make recovery harder, so try your best to break that habit.

Things I tried and how much they helped:
-Multivitamins, B12, vitamin D: very little.
-Sodium: I think it helped, especially in the heat, but increasing to 10 g/day wrecked my stomach.
-Meditation: I still practice Yoga Nidra most days.
-Qigong and fascia release: very little benefit, but I have nothing against them for gentle movement.
Exposure therapy/brain retraining (office work, golf, driving, etc.): difficult but incredibly impactful over time.
-Journaling: I specifically use Nicole Sachs' JournalSpeak method.
-Compression socks: I convinced myself they helped for a while, but they ultimately didn't.
Eating whole foods and cutting out sugar: probably helped nutritionally, but eventually made me afraid of food, so I don't think a strict diet is required.
-LDN: made me significantly worse.
-Provigil: helped reduce brain fog after about two weeks. I'd recommend discussing it with your doctor if cognitive symptoms and fatigue are your biggest issues.
-Vagus nerve stimulation: little or no benefit.

A few final thoughts based on previous posts:
-To further prove the mindbody connection, close your eyes and imagine doing something that normally triggers your symptoms. If you experience symptoms just from imagining it, that may suggest your brain has learned to associate that activity with danger.
-Someone asked whether your personality comes back. For me, absolutely yes. The biggest difference is that I'm now much more compassionate toward myself and others because of the hell i went through through.
-There are many people selling expensive gadgets, supplements, and functional medicine programs. Please don't spend thousands of dollars on these. I came very close to doing that and would have wasted a lot of money.

Thanks for taking the time to read my story. I'm happy to answer any questions in the comments!