I had a lot of thoughts and observations bouncing around my mind lately, so I wanted to gather them in one place.

Background:

• Developed LC upon 3rd infection in late July 2023
• Had had 4 vaccine shots, though the last one had been ~8 months prior
• Coincided with an extreme stress period of my life (toxic job, dental work, etc.) which I theorize but can't prove was a factor
• Prior to LC was generally fit and healthy: decent diet, good BMI, didn't smoke or drink, could do 5 mile hikes on hilly terrain, concentrated on difficult mental tasks for long stretches as a software engineer, no co-morbidities beyond stuff like GERD and seasonal allergies (which is just to say: I had no serious conditions prior to LC)
• Had long been a data nerd and so I had historical step-counter data, plus with LC I added a Fitbit to the mix to capture HRV*, resting HR*, and sleep measurements

Examples of symptoms at their worst (Dec 2023/Jan 2024, 5-6 months in):

• Brain fog so bad that even a 10 minute online chess game one day set off hours of it; frequent difficulty recalling common words
• Strong joint / bone / body pain that lasted for hours at a time where all I wanted to do was hide in bed
• Days-long fatigue, like heavy limbs and little energy to do things; maybe 1 or 2 "good" days a week
• Heart rate would easily shoot up from even mild activities like vacuuming a small room and take a while to come back down
• Was a rare day to see HRV* in the 40 ms range and it would dip into the low 20s ms range
• Was a rare day to see resting HR (lower is better) below 60 BPM and it often hovered around mid 60s BPM
• Frequent middle of night insomnia, bolt-upright and awake at 3 AM on many nights
• SOB* attacks from what would have been mild activities pre-LC (like 30 minutes of walking), sometimes so bad that I would feel panic
• Step counter showed a drastic decline in my average steps per day, from 6,500 pre-LC to sub-3,000 during this period

Examples of symptoms now (Aug 2024, ~13 months in):

• Brain fog: still not what I used to be able to do, but much improved: can do upwards of 3 hours of concentration on difficult tasks a day if having a good day; much less difficulty recalling words
• Pain: considerably reduced, only getting it once in a while / on especially bad days; I think LDN played a big role in the improvement
• Fatigue: considerably improved; LDN seems to have played a big role here; do still have days when I feel wiped out or run down, but it's more like 2 days a week instead of 4-5 days a week and I seem to bounce back from crashes faster
• Heart rate: does not spike as easily anymore; hardly even think about lighter activities like the vacuuming a small room example; it will still spike if I do more vigorous activities like certain kinds of yard work
• HRV: mostly in the 40s ms now, even saw a 52 ms this week; I'm seeing nothing below 39 ms in the past few weeks
• Resting HR: almost always in the 50s now; have seen as low as 55 BPM; will rise to the low 60s if I'm doing a poor job managing stress; note that this is quality resting HR data, not just off-the-cuff readings: Fitbit only records the number if it can gather 3 hours of resting HR while you sleep
• Middle of night insomnia/waking: happens less frequently, usually only when I am stressing during the preceding daytime
• SOB: much harder to trigger; only happens if I push too hard on physical activity, like not pacing myself during yard work; if I watch my Fitbit and take breaks when it meets or exceeds a (220-age)*0.60 HR it won't appear
• Step counter: improved; averaging ~5,000 steps per day now without big crashes; often having the desire to get up and walk around; I would not go hiking in the hills yet, but I don't feel as "crippled" as before

Things I believe have helped (me personally; YMMV):

• Pacing: it's one of the biggest helpers; spacing out tasks, breaking up tasks, deferring non-urgent tasks, taking frequent breaks
• LDN: seems to have helped a lot with pain and energy; it's thought to work by being an opiate agonist (so it kick-starts your body into producing endogenous opiates) as well as lowering the production of cytokines (which are involved in inflammation and potential auto-immune responses)
• Avoiding stress: besides strenuous physical exertion, the other reliable way to make LC symptoms worse for me is to stress out about things; this even includes stuff like news and doom-scrolling, so I will take 1 day a week where I don't use reddit or read the news
• Stoic thinking: it's just about re-framing your thoughts; realizing what's in your control and what's not; spending most of your time/energy on what you can do instead of what you can't; "The Daily Stoic" is a good book for this if interested
• Meditation: another thing that helps build a calmer, quieter, less-reactive mind; the more I do it, the better I feel; when I start skipping sessions, I start feeling worse

Things I believe did not help (me personally; YMMV):

• Diets and supplements: my diet was already good pre-LC, but I did have a phase where I experimented with probiotics and taurine and so forth and found it made no difference
• Traditional exercise (and especially anything like graded exercise therapy): I found instead it's key to let my body tell me what it's ready for, rather than force it to do anything; I do not believe you can "exercise your way out of long covid"
• Radical rest: I tried a long period of this and while I didn't get worse, it did not move the needle on feeling better; normal rest is obviously important, but in testing the theory of "what if I did Super Duper rest?", I found I could not "rest my way out of long covid"; in fact, on days when I am too immobile/sedentary, I feel worse; (obviously this could be very different for bed-bound people; I have never been truly bed-bound beyond a few stretches of bad days early on)
• Getting another vaccine shot (my 5th shot total): I did feel better for about 2 weeks, but then went back to baseline LC symptoms
• The long covid clinic in my area; given rule 10 of the sub, I cannot elaborate further

Things I'm not sure if they helped or not (me personally; YMMV):

• Avoiding re-infection: I've been religiously following the data on the Pandemic Mitigation Collaborative site, so I have been in full-on Hermit Mode during waves and only going out in public during the dips in numbers; thus I have no idea if a re-infection would be bad, good, or indifferent; but my pure guess is that it would make things worse, so I err on the side of caution
• Breathwork / breathing exercises like 4-7-8: I was big on this a while back and they kind of seem to help; they seem to improve my mood temporarily; but they don't touch symptoms like SOB or change the baseline much; meditation seems like it's a lot more powerful and helpful; I read that book "Breath" by James Nestor and felt it was deeply unscientific and anecdotal

* initialisms: HRV = heart rate variability (higher is better); HR = heart rate; BPM = beats per minute; SOB = shortness of breath; LDN = low dose naltrexone