Long Covid is a $16T problem already

We can’t keep ignoring Long Covid & ME/CFS. Well, maybe we can, but the results will be catastrophic. 

Want to know when my disability ramped up? Look at the frequency of my blog posts over time. I still have a file full of ideas for posts from back then. I ran out of energy for blogs/thought experiments. Then I ran out of energy for work. Writing & editing the last two entries knocked me out for a week, with residual effects even now.

I don’t wish this reduced life on anyone.  It’s better than the alternative, because I still have survival money & good days. (If I run low on/out of that I have options for help, but I lose independence. Yes, it’s that bad.) For a problem that feels fixable. I feel like I should be able to recover from whatever is wrong.

So if your health seems on a slippery slope down, barring incidents or accidents, chances are high you’re dealing with the the post acute effects of a virus, or the damage it caused or is causing, or your body’s immune response to the nasty 🦠. We’re slow off the mark in dealing with this despite lessons from the AIDS epidemic, because medical systems aren’t funded or designed around chronically ill patients that aren’t imminently fatal, and like to tell people to fix health issues with exercise. But if you get post exertional malaise, exercise can worsen baseline function temporarily or forever. If you don’t get help from doctors, you stop asking them for help. (Hint for the docs - low exercise levels correlate to bad outcomes *because* unwell people can’t exercise, not the reverse. Performing the activities of wellness doesn’t make one well.) Once “eat right & exercise” has done what it can, that’s when we see a doctor & we need medical interventions, not cliches.

Here are some first round Long Covid interventions. Some are repurposed antivirals from AIDS treatments, some are otc supplements. I started taking atorvastatin today. (I hear statins seem helpful for LC). 

I have been trying grape seed extract (super grapes ‘gummy’ heart chews). They cause, uh, loose stools. Not “explosively 💩 for 6 hours” like I get with metformin*, but a little concerning. Bodies dump a ton of water into our bowels to flush out nasty things, but I don’t know if the nasty thing getting flushed is the met/GSE (from a bad rxn) or the stuff those meds are fighting off (a good indication of effectiveness.) 

 "The urgent need for long covid meds", linked so I can find it again.

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a place to mention more of my metabolic med side effects 

Metformin helps clear my brain fog from ultra high insulin levels, but shreds my guts. I can’t physically take it more than 2 weeks at the lowest dose. I gain weight every time I take it because my brain interprets all pain signals from my stomach from level 1-8 as “hungry”. I put up signs saying “you’re not hungry, it’s metformin” but they don’t help enough. When it hits level 9, I get “pain/maybe hungry”. Level 10 is Pain, Not Hungry, 🤮 now.  Than I can’t eat for several days and am in pain. That isn’t great. Let’s try something else, right? But there are surprisingly few options to treat high insulin if your glucose is still in control, which mine is. With my intermittent metformin plan, my A1C went from 5.8 to [5.3-5.6], “ok” is <5.5.

I tried Victoza, but that took my sleep from 9-12 hours/day to 14-18 hours per day (just a mild insulin coma). So I put off trying the not totally dissimilar Ozempic, but I’m falling apart metabolically - all that insulin is shoving fat into my organs like it’s packing a carry on & can’t afford checked luggage. The ozempic does cause me to fall asleep after eating. After getting the 4-hour postprandial coma-naps down to 2-3/month, I was getting at least 2-3/week, to every day but for shorter durations. Having already started trying “intermittent fasting” (stuffing all food consumption for the day into fewer hours,) since years of small frequent snacks/meals hasn’t helped me, I could reduce these unplanned naps by eating less often. My hope was that if Ozempic started fixing my metabolism, the insulin spikes would become lower as they became less necessary. This improvement seems to be happening. (0.25mg every week, or every other week if I forget or need to make sure I stay awake for a crucial appointment.)

So far with Ozempic: I don’t get constant hunger signals, like I did with metformin, & actually feel satisfied after eating a snack or meal. My eye color had started fading. It’s back to being dark & vibrant after a couple weeks. (Maybe also related to getting iron infusions, but iirc it tracked more to Ozempic.) Also, my buffalo hump has gone from being a solid lump of semi-rigid fat to a thinner layer of flexible fat similar to most other areas on my body. It no longer moves as a unit. And I seem to have less post prandial sleeping unless I overdo things like I did with the last entry & the update to the previous one. That KOed me pretty hard.

I mention the buffalo hump, particularly, because that’s one of my “affects appearance/comfort/quality of life but probably doesn’t immediately need attention like brain fog, PEM, non-24, systemic tendinitis & fasciitis, excessive fatigue, coma-naps, pain, & restless leg (& more!)” symptoms. The hump is one of the key side effects that caused people to stop taking one of the earlier AIDS treatments. So it’s not a catastrophic symptom in and of itself, but people have ***risked dying of AIDS complications*** rather that put up with their body having that shape. Which makes me feel great that no one offered any solutions… “It’s genetic” was the best I got. And a YouTube video of upper back strengthening exercises akin to pulsing, appropriately, YMCA arm positions. I don’t know if my spine will straighten up any with it gone, & kind of don’t care as I’m still tall & the bulk is gone. But it’s definitely connected to glucose &/or other metabolic processes, and it went away in less than a month on the lowest dose, not after any amount of physical activity or lack thereof.  

I spend most of my time being horizontal these days. I can still stand and move around on demand if I’m not hard asleep, but I’m always, always looking for somewhere to sit or lay down. It limits my doing anything out of the house. It makes doing things in/to the house tricky. But it’s what I have.  If I could recover more functionality, back to being able to do road trips, or walk around an outdoor festival without feeling doomed, life would improve. But for now, I’ve lost maybe half the metformin weight, my eyes aren’t fading and the hump is, so I’ll take it. 

And hope that something better [is made to] come along.