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Researchers find Alzheimer's-like brain changes in long Covid patients

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Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#151

I visited two friends recently when I was back in Ireland. They had both been fit climber/orienteering types. Both now incapacitated with long covid. Both had been vaccinated. I went for a very short very slow walk with one of them. She wears a fancy Garmin which beeps when her heart rate goes over 100bpm. We walked for 15 mins and it went off. I really hadn't realised quite how real and quite how incapacitating long…

My wife (also in Ireland) got covid in the first wave in 2020 and has had issues with muscle function (weakness and paralysis) since. She's ok right at the minute, and these days her issues are intermittent - her last episode was in April. Maybe that was the last one? Or maybe not. It's been a tough 4.5 years

I’m sorry. It’s difficult to live with a sick partner, and most people can’t quite imagine the myriad of effects it has (unless they have also been there). You’re not alone if that helps.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#152

Earlier quoted context omitted.

It feels like a Black Mirror episode. A bunch of things shaving little slivers off our intelligence until we're too stupid to save ourselves.

Or a passage from the holy Bible. The wisdom of the wise men will perish. Isaiah 29:14 For it is written: "I will make the wisdom of the wise men perish, and the intelligence of the intellectuals I will reject." 1. Corinthians 1:19 For the wisdom of this world is foolishness with God, for it is written: "He catches the wise in their own cunning." 1. Corinthians 3:19 The wise have been put to shame. They have become t…

your book doesn't have a single bit of insight into cell cultures, microscopy, viral interactions, immune responses or anything else we've figured out in the last few centuries.

its ridiculous to use such a thing to degrade modern intellectual persuit.

please keep your 1st century book of wooly mumblings in the tax free echo chambers where it belongs, adults are talking.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#153

Earlier quoted context omitted.

You can probably take a low dose of adderall to alleviate atleast the symptoms.

I suggested that once, but was down voted by resident HN Medical Experts LOL The irony of warning not to take medical advice on HN, and then proceeding to offer alternative medical advice... This, despite the fact that Doctors do actually prescribe stimulants for CFS.

Given that it's difficult to judge whether or not a specific piece of medical advice is good or bad, many people will flag anything that's 1) not solidly established standard of care or treatment and/or 2) not backed by a very robust reference or citation. Yes, it's likely that some potentially valid advice gets nuked in this regard, but it also captures a lot of the bad.

Medical information couched as "I'm not an expert, here's my experience and some supporting references, your mileage may vary" tends to fly far better than doubling down on dissing opposing viewpoints or wildly novel and unsubstantiated information.

Dang's somewhat adjacent commentary: https://news.ycombinator.com/item?id=20078667> (in the context of someone requesting that bad medical advice be flagged).

My view is that at best HN might raise potential treatments / practices which people should evaluate with a qualified medical professional. And yes, I'm aware that both access to and quality of same varies tremendously and can well be its own massive challenge. Particularly when capacity to seek out and engage with providers is itself limited.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#154

Yep. People think I'm exaggerating when I say I've developed dementia. It's pretty intense (and terrifying) on the inside, but I've found ways to compensate to appear vaguely normal on the outside. Look, I'm even using multisyllabic words here! I also have the profound cardiovascular deconditioning described in other comments. So many hopes dreams flushed down the toilet, but people assume that I'm just lazy and stup…

When were you sick? March 2020 here and while cognitively I have been ok, my heart and lungs are all messed up. Four years, three primary doctors, five cardiologists, over a dozen tests and still no real answers. I tested as borderline COPD, given an inhaler and my lung tests improved dramatically, well into healthy range. However even with the inhaler I still get that "air hunger" sensation and the feeling like I cannot get a full breath in.

Oddly I got COVID this past July and most of my heart/lung symptoms disappeared the day before being sick, and did not return until a week or two after I recovered. I have heard this before in the LC community going back years.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#155

Earlier quoted context omitted.

I hesitate to ask but have you been checked for Multiple Sclerosis.

I haven't specifically been checked for MS, though I have had a decently comprehensive array of tests done over the last decade before discovering I've had early-onset gout since my teens and it's likely that MS is something my doctors considered. Why do you ask?

Mono is caused by Epstein-Barr virus, which is also strongly implicated in MS.

Perhaps you can get a single attack of MS but not get (many) more. Certainly fatigue is one symptom of MS. Blurred / double vision is another.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#156

I visited two friends recently when I was back in Ireland. They had both been fit climber/orienteering types. Both now incapacitated with long covid. Both had been vaccinated. I went for a very short very slow walk with one of them. She wears a fancy Garmin which beeps when her heart rate goes over 100bpm. We walked for 15 mins and it went off. I really hadn't realised quite how real and quite how incapacitating long…

[flagged]

The first long COVID communities started cropping up in May 2020. In April 2020 is when people first started talking about it.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#157

I had Covid once - when people considered the pandemic mostly “over” (early this year). The worst was the brain fog which took weeks to clear up.

i've never had covid, and i am unaware if this is in the literature because it may not be directly caused by the virus; but, did you have a lot of trouble sleeping/staying asleep? Anyone can reply, especially interested if you have a fitness band/watch that tracks sleep and breathing/heartrate, if you noticed that your sleep was greatly disrupted by the disease. I had some weird virus a couple weeks ago that didn't s…

COVID, at least strains from a few years ago, were known to cause insomnia.

But it seems likely it's something that could be from any virus.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#158

Yep. People think I'm exaggerating when I say I've developed dementia. It's pretty intense (and terrifying) on the inside, but I've found ways to compensate to appear vaguely normal on the outside. Look, I'm even using multisyllabic words here! I also have the profound cardiovascular deconditioning described in other comments. So many hopes dreams flushed down the toilet, but people assume that I'm just lazy and stup…

When were you sick? March 2020 here and while cognitively I have been ok, my heart and lungs are all messed up. Four years, three primary doctors, five cardiologists, over a dozen tests and still no real answers. I tested as borderline COPD, given an inhaler and my lung tests improved dramatically, well into healthy range. However even with the inhaler I still get that "air hunger" sensation and the feeling like I ca…

Jan '22 here. I'm sorry to hear that you're not finding the answers you need either.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#159
post #147

Yep. People think I'm exaggerating when I say I've developed dementia. It's pretty intense (and terrifying) on the inside, but I've found ways to compensate to appear vaguely normal on the outside. Look, I'm even using multisyllabic words here! I also have the profound cardiovascular deconditioning described in other comments. So many hopes dreams flushed down the toilet, but people assume that I'm just lazy and stup…

did you just have covid once before developing these symptoms? If so, when did you get it?

Yes (that I know of). Jan '22.

Re: Researchers find Alzheimer's-like brain changes in long Covid patients

#160

Yep. People think I'm exaggerating when I say I've developed dementia. It's pretty intense (and terrifying) on the inside, but I've found ways to compensate to appear vaguely normal on the outside. Look, I'm even using multisyllabic words here! I also have the profound cardiovascular deconditioning described in other comments. So many hopes dreams flushed down the toilet, but people assume that I'm just lazy and stup…

What symptoms do you feel recently? Are they improving?

The brain fog is hardest to describe. One symptom is that I confuse things much more easily now. It's like the resolution on concepts has gone way down. Instead of remembering a specific fact about a specific country (that I recently learned and resolved to commit to memory), for example, it's "some Middle Eastern country... or maybe it was African, but somewhere over there... did this thing where... something medical. Or maybe scientific." It makes socializing really hard. While using my multimeter recently, I convinced myself that voltage and resistance were the same thing, because they both fell into the "electrical" bucket in my brain. Even scarier, the double-checking mechanism failed, so that I didn't detect the absurdity for a while. It only resulted in a blown fuse, but I can imagine this kind of confusion having much more serious consequences.

As for physically, I just get winded much more easily -- and it's not the kind of winded I used to get, where if I pushed through, my body might complain but gear up to meet the challenge anyway. I just hit a brick wall where my heart and lungs won't give any more, either immediately or over the long run.

I've seen a mild improvement cognitively lately, though not sure why.

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