(Last updated June 18, 2026)

The First Time I Got Covid

Remember that time that they shut the whole world down, because they thought it was so bad for people to get covid that it’d be better not to have a world? Well, I got that version of covid, in October 2020. During the infection, I had a psychotic episode, which only lasted a few hours. I’ve never had one before or since. I was convinced that I needed to hide from my roommate, and everything was moving so quickly I thought I was on drugs. A few days after this passed, my breathing got bad enough that I went to the hospital. I got super lucky, and my breathing came back online. I went home from the hospital on the same day, and I woke up the next day feeling like a million bucks.

(I called Upali on a Monday to say I might be dying, and to talk about what he should do if that happened. Then I called on Tuesday to say “Hey actually I’m all better, you don’t even need to cover for me at work today.”) I got so fully healthy that I was driving around and doing long hikes, with no problem. But then …

Two Weeks Later

Two weeks after getting better from covid, most of my body systems started malfunctioning. One night I couldn’t stop itching from the inside. I developed what seemed like jet lag, where I’d wake up at 3AM ready to go. My heartbeat became arrhythmic, and I would feel sick anytime I ate food. The worst problems were cognitive. I had huge troubles understanding language, forgetting many words, and having such poor attention that it was hard to listen to conversations, even when they consisted of words I could still recall. My memory had also become so poor that I couldn’t remember where I was in conversations.

The First Nine Months

The first nine months of covid (Oct 2020 to June 2021) was nearly total disability. Things kept getting worse for the first few months until I largely forgot how to read. I was driving over the Bay Bridge when I realized I hadn’t looked at the road in a while. Terrified, I then started focusing on driving, but the same thing happened again a few minutes later. I blessedly made it home unscathed and (of course) decided that I no longer knew how to drive. I went to an ATM to get money out, and I had to confess to my friend who drove me that I longer understood how the machine worked, and I needed him to use it for me. This level of impairment was my baseline. During more severe episodes, I would be unable to speak, unable to walk in a straight line, or make the simplest decision (like what the people around me should do with me when this was happening). My husband would sometimes have to put my shoes on me, because I forgot about how to use laces.
Eating would usually make things worse, especially overeating or carbo-loading. I started carrying gum everywhere, so that when I would stop feeling hungry, I could put it in my mouth to prevent myself from mindlessly taking more food. During this period, my quality of life was low enough that, if there weren’t any hope for improvement, I would not have wanted to keep going. Conveniently, long covid was a new disease that didn’t even have a name yet, so there was plenty of hope that matters would improve. (While we now know it’s similar to or the same as CFS/ME, this wasn’t clear at the time).

When Things Started Getting A Little Better

I was trying desperately not to become physically deconditioned, despite my limited energy and capabilities. So any time I had the energy, I’d get in whatever exercise I could. Around June 2021 were the initial reports that exercise was one of the main triggers for long covid symptoms. I would get sick about 24 hours after exercising, so I hadn’t been able to notice the correlation. Once I stopped doing cardio, I started alternating bad periods with actually quite good periods. There would also be periods – up to a month at a time – where all symptoms of the disease would vanish, and I would think I was finally cured. For a while, it was pretty much one month of disability and one month of normalcy. By the end of the first year, my heart was back to normal (my cardiologist said “You should frame your EKG. It looks like you’re in high school.”) But my neurological symptoms and cardio intolerance continued.

Some of the Continuing Neurological Symptoms

1.) Getting “stuck.” I would fall into these episodes where I could do pretty much anything I wanted to, as long as there was some external forcing function. Like if my husband said “Get out of bed,” I would just get out. Even my calendar could say “go to work,” and I’d go. But if nothing was telling me to do something, I was incapable of doing it. There was one day I was stuck in bed until 6PM, because my family was out, and no one was there to say “get up.” Another day I was in bed, naked, and holding a pair of underwear. I spent about 4 hours trying to put it on, and I knew that if I yelled for help, someone would come get me out of this, but I was too embarrassed to admit that there were clothes in my hand that I wasn’t capable of putting on my body.

2.) Fear of loud noises. I don’t normally have an issue with loud noises, but during the episodes, I look like I’ve got severe autism. When there’s a loud noise, I cover my ears, basically get into a fetal position, and start moaning.

3.) Paranoia. This went away, but it was so severe that even the first time it happened, it was clear that it was a delusion. I would feel that everyone around me hated me, and couldn’t wait to get rid of me. I would feel like my husband and I were in a fight, and I would have vivid memories of the fights that I was aware – even at the peak of the episode – didn’t actually happen.

4.) Poor balance and grip. I smashed my phone, my laptop, and lots of other things. I couldn’t walk in a straight line or hold onto things. I would also get inaccurate depth perception, such that riding in a car, it always looked like we were about to crash. My friend who also has long covid has broken several bones from falling or crashing into things, but I’ve been lucky enough to just break my stuff.

5.) Overwhelm. I was visiting my friend Erik, who made us a stew for dinner. He told me to go get some, and I noticed there wasn’t a ladle in the pot. My sense was that this problem was so unsolvable that there wasn’t really any point going on with life. Erik saw that look on my face, and opened up the drawer and took out a ladle. No problem was simple enough that it couldn’t make me feel too overwhelmed to function during an episode.

“Body Fuzz”

There’s one other symptom that I call “body fuzz.” I think it might be similar to fibromyalgia, though I suppose I should have looked that up for sure before writing this essay. It’s full-body pain. The only other thing I’ve had like it is when you get a high fever, and your whole body hurts, but the pain isn’t located anywhere in particular. This also goes along with stiff joints and, similar to when you’ve got the flu, it’s kinda hard to move. Fortunately, this symptom just comes in attacks, and when it’s not happening, I’m generally pain-free.

What Helped

I got into the UC Davis Long Covid Clinic very early on. Each week, I’d have a meeting with an NP (online, since I couldn’t drive). She would ask very detailed questions while being extremely nice to me and assuring me that this wasn’t all in my head (given that I have a PhD and could no longer read, I wasn’t especially concerned that this was just anxiety!). At the end of each meeting, she’d let me know that this disease had no known etiology or treatment, and that we’d talk again next week. Eventually I stopped going to these appointments, as nothing ever came from them. Stanford Health was approximately as useful for long covid in these early days.

Eventually, I got into the long covid clinic at Kaiser (which was just one doctor!). She put me on low-dose naltrexone, which is a standard treatment now but was pretty creative back then. I called after a few months to say it didn’t do anything, so she told me to go up on the dose. At 3 mg it did a lot, and at 4.5 mg, I switched from having good months and bad months, to having 3 bad hours 1-2x/month. The protocol is: take 1.5 mg per day for 2 weeks, then 3 mg for 2 weeks, then 4.5 mg/day forever. The only side effect I had was diarrhea for a few days each time I went up on the dose. I’ve talked to a bunch of long covid patients who got nothing from LDN, but it’s certainly worth a shot (it’s cheap, safe, and easy to get, and works really well for some people).

I went to see a functional medicine doctor, who started me on a supplement called NAC. Of the bajillion supplements I’ve taken since getting sick, this is the only other one that seemed to clearly have a positive effect.

2024 Relapse & Vascular Dementia Symptoms

In 2024, after living a normal-ish life for a while, I had a severe relapse. It was around the time of my 3rd covid infection, but I couldn’t tell for sure if that’s what caused it (the 2nd infection had no effect on my symptoms). During this relapse, I started getting symptoms akin to vascular dementia, and I was awfully worried that I wouldn’t be able to live independently if these symptoms continued to worsen. I would frequently mix up facts about my husband, my brother, and a long-ago ex, as though I couldn’t remember who was who. My mom called and told me she was in New York City, so I asked her where she was staying. After a long pause, she reminded me that she had lived there (in New York) for twenty years, and was of course staying at her apartment. I couldn’t consistently remember my friends’ names. I also couldn’t walk in a straight line anymore, so while I could walk around the neighborhood and through my house, I couldn’t go to the supermarket or a restaurant without help, as I’d be crashing into everything.

I was doing research literature reviews a few times a year (which is so much easier now that there are LLM’s that work), and there had recently been a study showing that if you spent a boatload of time in a hyperbaric oxygen chamber, you could reduce covid-induced brain damage. Including commute time, I spent 20 hours a week in the chamber for eight weeks, while trying to work full-time (the chamber was so expensive that I didn’t want to cut back on hours), raise kids, and try to do things like eat a meal from time to time. The first month, the chamber didn’t have any apparent effect, but as I had no backup plan and had already paid for the sessions, I kept going. Around session 21 out of 40, I started feeling a lot better, and by 40 sessions, I was as healthy as I had ever been, besides a continuing inability to do cardio without making my brain shut off.

The specific protocol is 5 sessions a week, where you’re at a depth of 2.0ATM for 90 minutes (plus time on each end to pressurize and depressurize) breathing 100% O2, for eight weeks. Every 20 minutes, you take an O2 break and breathe air for 5 minutes, as the toggling between high and normal oxygen seems to be one of the main things causing the healing. Among a huge number of reasons hyperbaric oxygen helps long covid, the very frequent sessions actually cause you to grow new vasculature in your brain. Research shows extremely strong effects compared to active placebo at 40 sessions, and several studies have found no effect of 10 sessions. There isn’t much data on 11 – 39 sessions, so I went for 40.

2026 Relapse

For no apparent reason, I had another relapse in February of 2026, where I’d be fine sometimes, but every day there’d be a period where I would need help walking, couldn’t cross the street without someone to make sure I was doing it properly, and so on. This time I went into hyperbaric sessions immediately, and oddly, it was again session 21 when I started noticing effects. I have now spent more money on hyperbaric oxygen than I did on my Corolla, which I bought new. But even the simple ROI calculation of how much I earn by having a functioning brain is really in favor of spending all this! (Insurance generally doesn’t cover hyperbaric for long covid, as it’s still – God knows why – considered off-label).

A Summary of Everything That’s Helped Me So Far

1.) Low-dose Naltrexone, titrating up to 4.5mg/day

2.) NAC. The brand I use is Pure Defense with NAC, which has some other beneficial chemicals in it as well, including quercitin.

3.) Hyperbaric oxygen. As this is extremely expensive and time-consuming, I only do this when I get so sick that I can’t function without it. Note that the first half of the treatment often makes symptoms worse, so don’t despair too much if this happens to you. You need a medical-grade machine that can get you to a pressure of 2ATM (the soft chambers, which are pretty cheap to buy, don’t do this).

4.) Yerba Mate. The South American tea helped with fatigue more than anything else.

5.) Viagra. Yes, you read that right. It’s a vasodilator. Where it helps most is that sometimes after I have an episode, I lose all my energy. Viagra brings it back online (and doesn’t cause any embarrassing side effects). My doctor was kind enough to write “For long covid” on the pill bottle.

6.) Magnesium Chelate. My doctor recommended high doses of this (I think 1 – 2g) for the body fuzz. Magnesium has a huge number of functions in the body, and at the high doses, it made me feel angry all the time! I was going to my in-laws’ house with the kids, which I love doing, and was fumingly mad at everyone. This made me guess the anger was chemically induced, so I stopped with the routine high doses. But I take 200mg when the body fuzz comes on, and it usually goes away.

7.) A grounding mat. This is a very cheap mat that plugs into the ground of an outlet, and then you lie on the mat. I had an episode at my sister-in-law’s house, and she said I should try the mat. I did, and I got immediately better. I went home and bought one, and it did nothing. I returned it, and neither the second nor third mat did anything, either. But then I was back at her house and used her mat, and it stopped the episode again. I then bought a device to test outlet grounding, and her outlets were properly grounded and mine weren’t. A grounding mat sounds pretty woo-woo to me, but as I accidentally did a placebo-controlled trial on myself, and it costs < $20, I’m a believer now.

8.) Cannabis. It’s a fast acting anti-inflammatory that can cross the blood-brain barrier. I take this if the episodes are bad. I take just a small amount (25 mL of tincture, or 1-2 puffs on a pen), since taking more than this can replace one host of neurological dysfunctions with another one.

9.) NAD+. I’ve had mixed reactions to this. It’s especially helpful when the episodes cause me to forget words. I put some of the powder under my tongue, and the words come back very quickly. If I ever take it for a few days in a row, though, my symptoms start getting really bad. So I only take this when I forget words enough that I can’t talk.

10.) Photobiomodulation. I have a device called a VieLight. You stick it up your nose, and it blinks red and infrared light (through your nose is the easiest way to get to your brain). There’s some research showing anti-inflammatory effects of doing this, so I use it during acute episodes. It only works sometimes.

How Are Things Now

I’ve just finished another 40 sessions of hyperbaric oxygen, and things are back to their post-2020 baseline. In general, things are very good. I can travel internationally, work full time, and do pretty much everything I want to do except cardio. There are still bad episodes sometimes, but I’ve decided not to make any plans around this risk, and to just figure episodes out as they come. I’m going to try 20 more hyperbaric sessions, as the clinic says that they think this might make a big impact (but of course, they’ve got pretty strong incentive to say this). Because I got long covid earlier than anybody else you know, I keep getting strangers on the internet contacting me with questions about it, so I thought I’d write all of this up. While my top hope is that neither you nor anyone you know ever gets long covid, my second-order hope is that, if you do, this document can help a little. I’m writing this in June 2026, and I’ll try to keep it updated when there’s important new research, or when I learn of other treatments that work for me.