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.

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.