My first covid long-haul
In early April of 2020, I developed typical covid-19 symptoms; a runny nose, some congestion in my lungs, a slightly elevated temperature and some fatigue. Within two weeks my lungs cleared completely but I developed a gut ache with some mild nausea, a headache and some brain fog. Only once did my fever climb above 99.0 F. Little did I know at the time; this was just the beginning of a months long battle to regain my health.
Initially, I toughed it out, battling fatigue while working remotely from home. I would sneak in naps as best I could. Sometimes they turned into long naps. After 2 months, my brother Jim called me and wanted to talk about our annual Fall elk hunting trip – a highlight of the year for both of us. I was pessimistic that I would be able to hike and camp with my poor health and constant fatigue, headaches, and brain fog. Still, I resolved to loose 15 lbs with the goal of going elk hunting in the Fall. For this reason, I started 16:8 intermittent fasting. Which more descriptively should be called 8 hour time-restricted eating. Not eating or fasting for 16 hrs each day – counting time sleeping. So, I began to skip dinners and as I learned more, I tried to cut out all added sugars and all processed carbs. To my surprise, almost immediately I began to feel more energetic. My “viral headaches” became less frequent and my brain fog lifted. Two weeks later, I had my last headache – a strong 8 hr headache – and then they were gone. I was noticing a few gaps in my memory. The names of some familiar things were completely gone. Nothing at that memory location. I found this quite disconcerting.
I began to take day hikes in the Colorado mountains. At first, I could not keep up with my friend, especially at higher altitudes. 12,000 ft of elevation felt like 15,000 ft. of elevation. I persisted, hiking at least once a week. The next day I would be very fatigued, having to take a long nap. I was suffering from Post-exertional malaise or PEM.
As the Fall hunting season drew closer, I was desperate to find a remedy. On YouTube, I had seen a few fasting videos talking about autophagy being enhanced during time-restricted eating and during longer water fasts. I decided to try my first ever water fast. From Sunday evening till Friday morning, I fasted. On Monday evening, I felt a mild pain, mostly just a pressure under my sternum on the left side. “Oh no! Is this a heart attack?!” I thought. I decided to stay put on my couch. I experienced 5 or 6 hours of heart inflammation. Little did I know, but this was my first long-covid experience of my putative biomarker of autophagy; transient increased inflammation. In brief, I believe that autophagy results in antigen presentation of SARS-CoV-2 viral fragments on the cell surface in conjunction with MHC receptors. Immune surveillance, likely by cytotoxic CD8+ T cells, then triggers the transient local inflammation. The increased inflammation tells me – and other long-haulers – exactly where in our bodies there are viral proteins – either functional virions or viral debris. Real-time information, that covid long-haulers can feel and experience in a reproducible manner.
After my water fast, I recovered a few days. I then tested my recovery by going on back-to-back 7 mile hikes in the mountains. No more PEM. I declared myself 100% recovered. A fantastic feeling! Several weeks later I went backpacking and elk hunting at 11,000 feet in the rugged Colorado mountains with my brother. I felt great for the first 3 days. Then I came down with a bit of a head cold… Similar to what my brother was experiencing. He began showing new signs of shortness of breath and some coughing. He experienced fatigue, I was right behind him on those symptoms. Then he got a text from his wife one afternoon as we were resting high on a remote mountainside. She had just tested positive by PCR for Covid-19. We just sat and looked at each other for a few minutes… we both knew this meant an early end to our hunting trip.
My second long-haul
I fully expected that antibodies from my first covid-19 battle would protect me from reinfection. I was mistaken. Well, at least they would surely limit me to a mild case… And indeed, initially that seemed to be the case. Like my brother, I just had a mild head cold that lingered on for a second week. Jim tested positive for Covid-19 by PCR 6 days after his initial symptoms. Three days later, I got my nasal swab. 5 days later I got my negative PCR result. That was very frustrating. By the third week I was feeling better. That weekend I did a strenuous backcountry backpacking trip. Glorious trip, but a huge mistake! The day afterwards, a wall of fatigue hit. The next day, all my old long-haul symptoms returned, with a vengeance! Fatigue, gut ache, nausea, headache, brain fog, anosmia, insomnia and a strange “bobble-head” feeling. A week later I was in worse shape; my second long-haul was much worse than my first covid long-haul! It was a low point, both mentally and physically. I had been laid off from work unexpectedly in July. That compounded with the prospect of another long-haul was quite demoralizing.
Well, the fatigue and insomnia and anxiety were a rough combination. I could only sleep continuously for 2 hr at a time. I suspected that my cortisol stress hormone levels were through the roof. I began to meditate twice a day. My step counter showed that I was averaging only 250 steps a day. It was a major effort to even take a shower. Ok, how to get better? I was too weak to fast. I couldn’t even limit my eating to 8 hrs a day. I decided to try inducing autophagy with Resveratrol. I was already taking 800 mg per day of the plant flavonoid Quercitin with 22mg of Zinc to try to stabilize my Mast cells and limit viral replication. On Oct 29th, I took 600 mg of 98% pure Resveratrol. Early that night, I woke up with a mild pain on the right side of my lower spine. Really, more of a pressure than a pain. In fact, I could feel a pulsing of my kidney with each beat of my heart. Weird! I also had an increased gut ache and an increased headache. I turned over and went back to sleep. The next day, the kidney pressure was gone, but my increased headache and gut ache continued on. Thus, began my experimentation with using autophagy to trigger degradation of viral proteins.
Over the next 10 weeks, I tried many potential autophagy inducers. To my surprise, most worked! At least, they worked as judged by my biomarker of transient inflammation. I even discovered a few by accident! Here is a partial list: Resveratrol + Quercitin, extra virgin Olive Oil, a bar of 85% Cocoa Chocolate, Hydrogen water, Beta Hydroxybutyrate (KetoneAid Ke4), the diabetes drug Metformin. Various longevity supplements proved effective also: ResveraCel, Senolytic Activator, and Spermidine. Finally, I tried various NAD+ precurors and they were all effective as well: Nicotinic Acid, NMN, NR, and Niacinamide. Currently, I favor 500 mg of Niacinamide take at 2-3 pm or 4 ml of KetoneAid taken mid-morning and mid-afternoon. When I took ResveraCell, I had my strongest induction of autophagy ever. I took 2 capsules on Saturday, didn’t have much inflammation, got impatient, and took 4 capsules on Sunday. That evening I had a strong gut ache and a strong headache. I felt edgy, a bit weak, and if I held my hands out, they would shake. Those feelings continued all evening and through the entire night. I did not sleep well. The next morning, my increased gut ache lingered for a few more hours. Wow, too much autophagy! That afternoon, I noticed my urine had turned brown. Not slightly brown, very brown. I wonder if this was cellular debris from lysis of virally infected cells? Hard to tell. But other long-haulers have now reported similar experiences. Fast forward to Thursday Jan 7th as I write these words. Eleven weeks of inducing weekly autophagy to battle what I believe is a persistent SARS-CoV-2 infection. If there is no longer functional virus, at least there are still residual misfolded proteins – likely as inclusion bodies. All my long-haul symptoms have gone away. My symptoms disappeared in this order: bobble-head feeling, nausea, brain fog, anosmia, headaches, fatigue, gut ache, insomnia. I am now able to walk 6 miles a day with no ill effects. I have not yet resumed any strenuous exercise. I am not yet fully recovered, as when I induce autophagy strongly, I still get a mild gut ache. I do hope that I am just a few weeks away from 100% recovery. That is my experience of Autophagy
* This article was submitted to the academic journal Autophagy on Jan 8th, 2021 at the request of it’s senior editor, Daniel Klionsky Ph.D.
March 15, 2021 Update: I am now fully recovered for 1 month. In all, my complete recovery took 3.5 months with the biggest improvement in symptoms the first 2 months. Then a more gradual slow recovery to 100% in the next month and a half. I can eat sugary foods. I can exercise and shovel 2 feet of heavy snow. I appear to be fully recovered via periodic autophagy… a second time!
April 28, 2021 Update: Relapse after strenuous exercise: Well surprise surprise! My 3 days of snow shoveling combined with a very stressful/emotional day triggered a significant relapse. Over the next month I developed a slight headache, slight gut ache, my stools became loose and clay-colored (for two weeks), and I experienced hours of pronounced fatigue. Upon induction of evening autophagy I felt liver inflammation and some brief muscle pains in my ribs and glutes as well as knotting in my intestines. During this period I also received my two Pfizer covid-19 vaccinations. I have now resumed my autophagy weekends and am slowly working my way back to full health once again. I have not felt up to going on my daily walks. I estimate that currently I am at 75 to 80% of normal functioning.
August 5 2021 Update I am back to zero long covid symptoms… most of the time. I can walk 4 miles with no ill effects. When I induce autophagy, I still feel inflammation as a mild gut ache.. sometimes as a mild head ache. Last month I felt chest pains, like pericarditis a few times during autophagy. So continuing to try to get the viral debris completely gone. I think it is like I have swept the floor but now need to carefully vacuum the corners and baseboards. Very tough this time to get to 100% recovered. But still, happy that I am at 95% of normal functioning, sleeping good, and can think clearly!!
March 6, 2022 Update: Had a flare-up of symptoms Sept of 2021. Couldn’t read, sudden brain fog, developed ringing in my ears -tinnitus – suddenly. New symptoms… more evidence of viral persistence. This damn persistent sleepy bat virus. Periodic autophagy gradually decreased my tinnitus over 3- 4 months until it was gone. Now I only hear the ringing in my ears – mildly – when autophagy triggers in the evenings during a water fast or alternative method. I get some gut tightness and sometimes some head pressure too. No closer to declaring victory than I was in August. 7 months ago! This is a long long haul. And I am relatively well off compared to many long haulers.
March 10, 2023 Update: My current baseline symptoms are:
- mild or very mild gut-tightness with a slight bloated feeling
- mild or very mild head pressure
- mild or very mild cranial nerve soreness
During a flare-up or Verx, my symptoms typically are:
- gut-tightness with a bloated feeling
- mild nausea in association with a stronger Gut flare-up.
- moderate head pressure
- cranial nerve sorness, including the throat area, side of neck, and base of skull. Also soreness to pressure just in front of one of my ears. I suspect this is inflammation in the trigeminal nerve ganglion.
- Very mild tinnitus… much improved from my Aug 2021 relapse
- occaisional mild heart aches at 9-10 pm towards the end of my evening flare-up.
- Occaisional random spikes in my Heart Rate when standing or walking. Typically they spike to 130 bpm once or twice a day for a few minutes.
I now think that I likely have a permanent low-level SARS-CoV-2 infection in some cells and tissues. This is tough to accept. Yet, it makes sense. The immune system does not want to kill certain cell types… such as intestinal stem cells and nerves. Other than the gut, most of my symptoms now likely reflect viral persistence in the nerves and brain. On my latest Long Covid symptom survey, I would score about a 3 or 4 today. During an autophagy induce flare-up or Verx, I would score 7 or 8. That seems bad to me. But then I look at the survey scores of other long haulers and I see a median score of 37 for men and 52 for women. The highest score I have seen is now 111. By comparison, my issues seem minor.
My goal is now to minimize the viral load and maximize my body’s containment of the virus. To me, this suggests periodic autophagy, eating a no added sugar and plant-based diet. I now try to get 70-75 % of my calories from plants though I do eat some plain Greek yogurt, eggs and oven-roasted meats. I also take a 1 g Lysine supplement with any nut snacks as they are rich in the amino acid L-Arginine. I hope this regimen reduces the growth signals to my cells via insulin, insulin-like growth factor and arginine. I also avoid all strenuous exercise. I do a water fast of night-day-night for about 36 hours once a month. I hope that periodic autophagy helps improve my metabolic or cellular health. As far as exercies goes, I try to average 5000 steps a day. Mental and physical pacing helps. I recline and rest 20 min after lunch with an airline eye mask. As much as possible, I avoid major emotional stress. Anything that compromises or suppresses our immune system – such as emotional stress – should be avoided in my opinion.I