Thread by @SalvMattera

1 in 37 Americans have COVID. This means that there are ~300K ppl who have COVID right now that will develop long COVID, just as I did. This is what it's like to get long COVID as a healthy young person, and what treatments are available when you have $$ and great insurance:

I was diagnosed with long COVID shortly after my third COVID infection in early 2023. This is despite getting all the vaccines and all the boosters, and despite taking paxlovid. I was 33 years old, with no major health problems. Only time I saw a doctor was at my annual physical

I worked out 5-6x/wk, sometimes 2x/day. I had a personal trainer at Equinox. The day I found out I had COVID for the 3rd time, I had booked a hot yoga class for that night. I had to call and cancel, "sorry I have COVID," I said. I didn't know it would probably be the last time I ever booked a hot yoga class

After that third infection, probably because of taking paxlovid, I tested negative for COVID within a few days. Yet, I just sort of never recovered. I had crushing fatigue and a racing heart rate for months afterwards.

This gross, sickly feeling would come out of nowhere and envelope me for hours at a time. It came in waves and felt like I had the flu. I would have to go and lay down until it passed. Over time, it became less frequent, but happened on and off for more than a year.

The worst part was probably the chest pain. When it first began, it freaked me out, and I sped to the ER thinking I was having a heart attack. It felt like someone was sitting on my chest. "That happened to me for about a month after COVID," the ER doctor told me, before he did an EKG and sent me home.

For me, it lasted a lot longer than a month. In total, it was about a year, though even 18 months later it still occasionally happens. Not just pressure, but also stabbing pain, like a knife in my heart. Palpitations that would last all day, every day for weeks straight.

There were times when I felt I was recovering, but then new symptoms would emerge seemingly out of nowhere. In March, 3 months after the infection, I thought I was mostly better, and so I went to a friend's bachelor party in Arizona.

There I discovered that I have a heat intolerance, which still plagues me to this day. Now, anytime I'm outside in weather above 85 degrees or so, my heart starts racing, my vision goes dark, and I feel like I'm going to pass out.

This had never been an issue for me before, in fact, less than a year earlier, I was at Burning Man 2022, an especially hot year where the temperature was well over 100 degrees every day. I danced and drank, and slept 4 hours a night in a tent, and had no problems at all.

The 2nd time I went to the ER was in June, about 5 months after the infection, when the left side of my face went numb for no particular reason. "I'm afraid I'm having a stroke," I told the person at the desk. Thankfully, I wasn't having a stroke

But the CT scan they ran showed some abnormalities that weren't caught until the next day. "Your husband needs to get a brain MRI right away," the doctor told my wife, in a frantic phone call he made to her when I didn't answer my phone.

Unfortunately, the wait list to get a brain MRI in the Bay Area was, at least as of last summer, about 3 months at most hospitals. For about a week straight, I used my lunch hour at work to call hospitals to see if I could get in any sooner.

Eventually I did get in, and fortunately, the brain MRI didn't show much. But my symptoms continued. At one point, I kept a Google Doc with all of my symptoms, and I would journal every day before I went to bed. I had dozens of different symptoms:

Sometimes, my muscles would twitch in different parts of my body. I recorded this video for my neurologist where you can see my hand visibly jerking involuntarily. I would have pain all over the place, but especially in my right shoulder, and in my neck and upper back.

I would lose my hearing for a few minutes almost every day. I would get dizzy spells that would last for an hour or more. I'd have intense nausea that would come on quickly and last for about an hour. I had weird episodes with my vision where things would get blurry

Sometimes my hands would go numb. Once, I had a bad panic attack. I used to be a moderate to heavy drinker, but lost the ability to handle alcohol. Even a few sips of wine would give me terrible chest pain, and the next day I'd have the worst hangover. And many other things.

Now, about year and a half later, I'm mostly better, but still not back to normal. Issues with heat and alcohol, loss of smell and taste, and some numbness and pain in different parts of my body still bother me.

I'm not someone who exaggerated this to get out of work or something. Other than a few sick days, I continued to work through this whole ordeal. In fact, I performed well enough to get promoted. But the rest of my life suffered.

I cancelled all of my vacations. At night and on the weekends, for months straight, I basically just had to lay on the couch to rest and recover. It put a lot of stress on my wife, who also works full time, as she had to mostly take care of our toddler by herself.

If this happens to you, know that you are screwed. There is nothing and no one who can really help you. There are some people who claim they can help you, but they are mostly lying, possibly just to take your money.

I am quite privileged when it comes to accessing health care. I have plenty of money. I have literally one of the best, if not the best, health insurance plans you can possibly get. I live within driving distance of several world-class hospital systems.

I actually have a benefit at work where a team of doctors and nurses will work on my behalf, calling around to find treatments, pester doctors for referrals, and get second and third opinions from highly regarded specialists for me.

And despite all of this, I have found almost nothing that actually works. Sure, there are some things that sort of work a little bit sometimes for some people in some instances, but recovery mostly comes down to pure luck. Throwing darts and praying.

And I've tried. Many, many different pills. Surgery. Injections. HIV drugs. My blood distilled down, then injected back into my nose. And supplements, so many supplements. Probiotics imported from Hong Kong.

My case is mild compared to many other people. I have friends who are younger and healthier than me, and have been hit even harder. Many of them can no longer work. Last week, @BernieSanders introduced a bill to fund long COVID research. It is vital that it be passed.

@_proud_atheist By far the worst*