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I have been dealing with something that sounds very much like what you describe. It started a few years ago. At the moment it is manageable. I've been in and out of many many doctors' offices. Bloodworks actually indicated a recent (but past) EBV infection, that's why your post rang bells with me.

Would you have pointers to how to nail this down? Introductory material or such?

I have to say I really feel your description of the anxiety cop-out. I literally had doctors shouting at me "you are not sick what are you doing here" at some point when I was sitting there already nearly crying because once more I was sitting there, mostly fine, when a few hours ago I was barely able to get up, let alone get on a bike to go to a doctor. And yes, "anxiety disorder" was diagnosed, but no treatment... because I guess the solution is just to "man up" right and stop being such a wussy. :(

Edit:

since others are sharing their experience of the cognitive impact, I'm gonna chime in here.

For me, the episodes came in two flavors:

1. I was feeling weak, and felt like falling. That was both in reality (I was having trouble staying upright and had to lean and hold onto everything and anything while standing/walking) and in my head. It wasn't so much that the world was spinning. It was more like sitting on a chair, rocking back and forth on the hind legs only. And then the moment when you realize you lost your balance and are going to fall over backward. That feeling.

2. I was also feeling weird but had no trouble with balance. However, the whole world suddenly seemed unreal and far away. Like seen through a bad CCTV screen.

Needless to say, both of those states, experienced at random times over months and months, with no explanation, and little support from doctors who were either uninterested or seemed to think I was just seeking attention, did indeed make me more anxious than I ever was.

Sounds similar to Lyme disease as well. I think the body deals with some persistent infections in a similar way, but I've also observed that there is little interest in researching or treating these conditions.

Autoimmune patients often get checked for Lyme, as the symptoms line up well.

Sjogrens, a cousin of lupus, has an insane amount of odd issues associated with it. POTS symptoms, lots of various organ involvement, brain fog, etc.

Well maybe now we'll get some more interest in it... Hooray! /s

I was diagnosed with depersonalization when I was a teenager suffering from severe anxiety and depression. Sounds. Exactly the same.

Especially the bit about doctors telling you that you’re ok but that you don't want to accept it. This sounds like hypochondria?

> sounds like hypochondria?

I can assure you that I have considered that. Still do. But ultimately, that would mean "learning" to not believe my own physical reality. I'm very much into intersubjectivity, but this is the one exception. That would be different if any of those doctors had actually seen me during an episode. The only time that happened however was when I was visiting friends. I had an episode while just hanging out there (holiday season stuff) and there happened to be a physician in the house when it hit. That guy never asked whether what I'm feeling was real. So it's that guy and me, vs a bunch of people who have never seen it happen.

I hope you find the help you need whatever that may be. It sounds like a really difficult thing you're going through.

I'm sorry to hear that, but I'm glad you managed to learn to control it somehow.

I personally know two COVID survivors who are experiencing a barrage of various symptoms several months after they were told they were healthy, and new symptoms keep appearing. Both have been in contact with other survivors who've reported the same thing.

Now obviously this is just a single data point (or two depending on how you see it), and I am no medical professional, but I have no doubt what they're experiencing is real and a direct result of COVID. If we assume there are others, even if it is just a small percentage of the people who recover, then we're still going to end up with a shitload of people who will live with a multitude of issues that will make life very difficult. And the worst case is we don't know how much more is to come.

It's amazing how people think a virus that lives latently in B cells and epithelial cells, and is strongly associated with various forms of cancer among a big helping of autoimmune disorders, is incapable of causing post-viral syndromes. No, it must be anxiety, of course!

EDIT: Just because a disease makes you frustrated because you can't really do anything about it except empathize and listen, doesn't mean you can just slap the anxiety band-aid on it and call it a day.

Correct, I don't expect doctors to cure me. I expect them to acknowledge that EBV could play a part here. But nope, just anxiety.

Post viral fatigue syndrome has been observed following infection with many different viruses which "include Coxsackie B viruses, EBV, CMV, influenza, various arboviruses, HHV-6, and HTLV -1 and 2".

https://www.sciencedirect.com/topics/medicine-and-dentistry/...

With this kind of argument if HIV2 comes we shouldn't worry because these symptoms already exist with HIV1

> But things like autoimmune issues, persistent 15-year brain fog (I'd rather call it frosted glass layer) which randomly clears once a month to remind me how nice it is to be able to think straight

I've been experiencing something similar for the past 5 years: brain fog (frosted glass is a much better way of putting it.) and some short term memory issues. The doctors put me through a battery of tests to find...that they could find no reason for my ailment. Curious to know what if anything has helped you the most. The 'randomly clearing' brain fog for a day happens to me maybe once every 3 months and it's both a blessing and a curse.

Sorry to hear this. I cured mine with a CPAP machine. I had to be tested with apnea twice bc the first one came out ok but i wasnt convinced.

In any case, i hope you feel better

Thanks - already had/have a CPAP machine, so unfortunately that's not it.

> staunch believer in post-viral syndrome

+1

The last time I had a serious viral infection, I began having panic attacks and severe anxiety with mental fog, which didn’t go away when all the other symptoms did. My wife said I had “changed”.

When I tell doctors, they just kind of shrug. It sucks that it’s not taken seriously. I hope COVID-19 leads to more awareness of post-viral syndrome. Before Covid-19, we were all too cavalier about getting sick or getting other people sick.

This might seem a bit out there / like woo woo to some, but have you tried "breathing exercises" (intermittent hypoxia) and cold exposure to counter those effects you are talking about? Particularly, the Wim Hof Method?

I know it helps for people with autoimmune diseases anecdotally, but there's also some good scientific evidence for it.

I regularly monitor my O2 saturation (via an OTC pulse-ox) when flying unpressurized airplanes.

It’s extremely easy to raise my O2 sats at altitude by conscious deep-breathing, but IME, it’s incredibly difficult to lower them near sea-level by any amount of conscious breathing changes. I’m curious to try the Wim-Hof methods on my pulse ox and I’ll do that, but I fully expect to see consistent 98-99% O2 sats here at 10 meters above sea level with anything other than changing the air composition to reduce partial pressure of O2.

From my understanding, the deep breathing doesn't particularly raise O2 (which is already 97-99%) but purges CO2, which then lets you hold your breath (empty lungs) for 2-3 minutes. In this period, my O2 (on my finger) drops to 85% before I feel a need to breathe in. It is important to 'replenish' the CO2 between deep breathing, otherwise I get very loopy.

Yep, and it certainly helps. Also Dr. Joe Dispenza's Mind Body Connection. I think a lot comes from stress, anxiety and dealing with your body with a wrong mindset.

But it doesn't explain all the issues away.

This has some parallels to what happened to me as a child, in that case it was clear that some kind of post-viral syndrome was in effect, but I never connected to the brain fog (I would describe my sensation as my brain turning into fog) I got some years later.