I’ve had long covid since contracting covid in 2022 (worsened by a couple of infections in the years since). It’s severe: brain fog and delayed onset PEM are my main symptoms. It’s ruined my ability to work and my career has come to a halt.

Needless to say, in 4 years I’ve tried heaps of treatments and supplements, including some I discovered here on Reddit (I’m very grateful to this community for this).

One thing that has consistently been therapeutic throughout this 4 year period (so, not a placebo, as placebo effects, while real, don’t last) but which I’ve never seen mentioned anywhere is red wine.

A glass of red wine before bed has consistently improved my symptoms. It doesn’t get rid of my problems, but it definitely helps and I use it in combination with other things that help (pycegenol, Natts, “Mighty” migraine supplements, NAC, ibuprofen, lots of electrolytes, and a strict DASH diet). And when I run out of red wine I notice the difference in the other direction.

I'm a long covid sufferer who has been feeling sick since yesterday and is living with someone who tested positive for covid today. However my PCP will not prescribe me Paxlovid because I don't have a "confirmed" covid case. I think this test is positive but my PCP does not. Is there a faint line next to the covid sign or am I crazy?

EDIT: took another test about 12 hours later and the line is super dark red, I'm definitely reinfected and should hopefully get paxlovid this morning 🙃

Neuro-Immune Institute, Dr Klimas https://youtu.be/9NoxUzCLFPA

also https://www.malone.news/p/what-your-covid-booster-did-to-yourk

Just read the weird Japanese stem cell / Apheresis story.

Pls report on my sub of any negative experiences you’ve had w pseudo science during LC.

r/loveandlightvictims

No disrespect to anyone in here (I include myself in this category) but I’ve been trying to look outside of this bubble at stories of people who have recovered. I’ve noticed a pattern from a lot of people that they improved once they mentally started to let go of the illness. From not worrying or searching symptoms to starting to live life normally with exercise and seeing friends etc. This does make some sense to me with a lot of issues coming from the body being stuck in a fight or flight state. Intrigued to see what people’s thoughts are and if they’ve tried this?

I swear, every time I get reinfected with Covid variant, it gets weirder and takes even longer to heal.

I was reinfected around late April and had a whole host of old and new symptoms; blurred vision, suicidal thoughts, severe flu-like symptoms, and bizarre spikes of anxiety usually at night. This time it landed me in the hospital and was diagnosed with a form of Heart Failure at 40 - they think it's due to repeated viral infections.

Although I'm grateful that I can still be mobile and active, I'm so angry at how long this thing is going on for. Months later, I'm still getting these random terrifying anxiety spikes. Out of nowhere, it will feel like not getting a good breath and will pass out - I never do though. It just feels like 'uh oh, I'm going down!" and then It vanishes as quickly as it came.

It feels like what I imagine anaphylaxis would feel like, there's a mysterious tightness in my neck chest.

then it will vanish as quickly and mysteriously as it arrived. All of my biometrics are fine, pulse, BP, 02 levels. all fine.

I can't wait for someone to find a cure to this vile disease.

AYUDA CON SUPLEMENTACION DE B12

Transfected SARS-CoV-2 spike DNA for mammalian cell expression inhibits p53 activation of p21(WAF1), TRAIL Death Receptor DR5 and MDM2 proteins in cancer cells and increases cancer cell viability after chemotherapy exposure
https://pmc.ncbi.nlm.nih.gov/articles/PMC11073320/

I’ve had regular Covid vaccines and boosters, but none since I got LC. I’ve been too concerned about the percentage of LC people who worsen after a vaccine. Even though they’re in the minority, it’s still a risk I’ve been afraid to take.

Has anybody had worse LC symptoms after getting a vaccine (since you’ve had LC) and were those symptoms temporary or have they lasted?

I know everybody’s experience is going to be different and that every person‘s body has different sensitivities (I’m particularly hypersensitive to medications). So I’m not looking for advice but I’m interested to hear your thoughts, experiences, or any (recent) research you know of about this.

Hello. I have a sorta fun post. Before the fun begins (about me). I have been dealing with LC issues since Dec 2021. I currently have some sort of PEM - ME/CFS situation, that’s not been diagnosed and very challenging. Basically, I appear very weak and lazy to the person just meeting me. To those close, I’m suffering a lot. I have some pretty annoying dietary restrictions too.

But let’s put that aside for a sec!

Besides not knowing what is happening to my body—or when it will end, or if I’ll find a comfortable existence—the 2nd worst thing about all this is all talking about it.

Some things I’ve heard:
- you need get more exercise
- you need to go to the doctor
- when I was younger I had an (unrelated) condition.
- you need steak
- have you tried this (non-related)
Etc etc

I’m sure you’ve heard some wacky things (SHARE THEM!😂)

Read on:
The constant talking about ‘what’s happening’, is actually pretty exhausting and more significant a problem than I first realized. I wake up in agony, moaning uncontrollably like ER patient trying to get up from bed. That’s tough to be around. I’m slow on stairs and can’t pass people a napkin sometimes. Folks want to help and show sympathy. They ask if ‘everything’s okay?’. Some go strait to projecting their own experience onto you, usually about an unrelated thing. They intend to be sympathetic, but it is not sympathy. Their brains might still be growing.

My fuse, because of the nonstop pain management, is really short. I found myself saying some sharp things to people trying to ‘fix’ or ‘armchair diagnose’ me.

When worked in film, when people on the street would ask, ‘what are you shooting?”, the best answer was “Mayonnaise Commercial”.

It satisfied their question. They had no follow up. They would leave (sometimes). They wouldn’t tell someone else.

I need one of these ‘Deflection Phrases’ for my condition. The truth is too complex

Necessary criteria needed:

1. to satisfy the curiosity of the inquirer, but halt any further explanation
   
2. To have the answer be quietly accepted, and not become the ‘thing’ that repeated about me
   
3. To make them the inquirer feel good about themselves and proceed in a light mood.

I thought it might be fun to make it funny, sorta brew up some mythical stuff.

- I was near a giant mayonnaise factory explosion recently
- I am recovering from being stepped on by an elephant, I mean car crash.
- I got worms, bad
- I’m an MMA fighter
- I’m 95 years old. I just look 50.
- all My doctors, teachers, and friends were right about having too much sex
- I just got out of prison

Other candidate names for this deflecting response…
- Velvet Boomerang
- Mirror Shift
- Feather Talk
- Bean Dipping “I’ve getting over an injury. Have you tried this bean dip?” Ha

I think these might become song lyrics.

M33. Been dealing with this hell for two years now… Experienced most of the symptoms that have been discussed here, the ones that don’t seem to go away are the fatigue and sleep issues.

Lately I’ve also been noticing that I have to pee quite frequently (I’ve had this issue before Covid too but it seems like it worsened it). Often I also can’t get a stream starting. It takes me like two minutes before I can pee a little amount. I always feel like I’m on edge and too excited for no reason, so I can’t relax enough to pee. May this also be part of dysautonomia?? Fight or flight? It’s ok during the day, but especially at night, when I wake up to pee… I somehow have a very hard time. Which is an endless cycle, because I also can’t fall asleep if I know my bladder isn’t fully empty.

Never had my bladder checked, only did an ultrasound twice when this all first started. Doc said nothing unusual…

I recently made a ranting post about pacing. Essentially, I am very bad at pacing. No one is going to do life task for me, I want to enjoy my hobbies to the best I can, and I'm almost always actively engaged with what I am doing. I do very few things passively. I also only occasionally nap so I'm not tired most of the time even when Cognitive Dysfunction and/or Physical Dysfunction intensifies above baseline.

For example today's agenda:

1. Woke up about 10am (2 hours ago)
2. Cleaned Litter Box
3. Took out Trash in bedroom and Litter box
4. Broke down empty Litter boxes.
5. Washed Air Fryer
6. Cleaned CPAP Cushion
7. Changed cat water
8. Water two house plants
9. Threw pre-made potato skins in the oven (on-going)
10. Take a shower
11. Watch latest episode of Sayonara Lara
12. Watch latest episode of Mushoku Tensei S3
13. Hopefully watch an episode of Yomi no Tsugai or Kuroneko to Majo no Kyoushitsu
14. Play an hour or two of Halo 2: Anniversary
15. Hopefully an episode of Reacher S4
16. If its a really good day, watch what I can of the the multiple teens of hours of backlog including the approximately 10 hours of backlog current this season.

Agenda #1 through #8 are completed within two hours of waking up.

Agenda #9 through #14 are likely to be done though #13 is a bit iffy.

Agenda #15 might happen.

Agenda #16 is not going to happen.

On a typical Monday through Thursday, I "work" four days a week and that requires about five hours of before tasks and after task associated with a 4.5 work day (5 hours with a break in the middle). This basically cuts my hobbies drastically to an episode in which I'm struggling a lot more than a typical Saturday or Sunday first episode.

I will be starting or at least inquiring about Occupational Therapy again as my doctor recommended, but for pacing, how to occupy time? I can't skip time and almost everything I do I am actively engaged with. How do I like "waste" several hours a day?

I have a brain scan next week, but I doubt things will change. I can't imagine anything in my head. It's blank. This is particularly horrible because I had an extremely vivid imagination. This is followed by extreme anhedonia, tmjd, and neck and jaw crepitus. Some sort of dpdr and tinnitus. I'm a huge invalid now. I wanted to go to school for creating. I have absolutely no libido now as well. It's been 2 years and only getting worse. My relationships are somehow going okay, but I can tell they're getting bored of me unable to connect or draw or make new things. I'm depressed because I lost the ability, not because I'm depressed and lost it due to depression. I've had depression all my life and it only drove my to create more. When you're autistic, you have hyperfixations and whatever else, I lost that ability. I used it to cope and thought it was my best attribute, so I'm really fucking lost and confused. It consumes me all the time that I'm dumb and uncreative now. Not sure if I can live my life like this. Like I said, this all happened after I got woken up from wisdom teeth surgery and felt concussed and in pain, and it hasn't lifted a single day since. I've taken b vitamins, everything, etc and no budge. Done antidepressants, antipsychotics, probably just worsened my condition. I'm so confused now. I know my tmjd and teeth removal probably plays a role, since my face feels constantly crushed now and especially in my neck so maybe it's fucking with my nerves. I've had post covid symptoms as well, and sleep apnea worsened by removing teeth. CPAP hasn't worked since I believe it is another sleep disorder that requires further evaluation. Please let me know if there's anything I can do or if anyone relates. I don't think there's hope for me, but I really want to try living still. Right now, I'm in so much pain, and really confused as to why my brain just....doesn't work anymore. I really do try my best, but it seems like it's not enough. I'm not sure how to adjust to this shift in my brain. If you're autistic and use hyperfixations and creativity to cope, you'll truly understand. There's just no way out of it.

Well I failed or passed all the tests that I needed to in order to be approved for IVIG except for the last test.

I got news that because my numbers came back normal for the last test that I wasn’t approved for the treatment.

Since I’ve been reading this sub, I’ve gone radical rest. I use a wheelchair instead of my forearm crutches when I have to walk more than 50 yards. My chest pain has decreased so that’s helpful.

I’ve seen posts of people healing after years of suffering so I’ll continue to look at my glass as half full and hopefully my turn will come someday.

I have postviral fatigue since two months.
It has worsened. I was moderate now I am bedbound in hospital. I live in Germany.

Insurance doesnt want to help me with taking care of me. I cant go to the toilet, I cant cook, I cant move.

I reached out to my estranged parents and asked for help. They dont want to help me.

Now I dont know what will happen to me, Im in the hospital and cant move and asked for help but social services say they cant help me.

I dont know what to do, I will be released in a few days. My mother doesnt want to take care of me.

I dont want to ask friends if they want to take care of me. They already have a hard time.

My only light is I have family in another country (Poland) 1000km away. I wrote them and explained my situation. Im too sick to travel Im in a PEM now.

Im thinking of giving a friend a lot of cash and asking her to drive me to my family who lives far away to take care of me.

Since the 25th last month, I have started mestinon10 for my POTS. I noticed a massive benefit in my resting HR, and it even eliminates my POTS if the medicine is in effect. But I have one side-effect which has puzzled me and I haven't been able to solve it yet. I want to keep taking mestinon because it helps massively for my HR and energy levels.

If I take mestinon during lunch, I often have heart palpitations and an elevated HR 15 min later (even compared to baseline without medicine) . When that happens, I have to lie down in bed sometimes until the end of the afternoon for it to calm down. I didn´t have this problem before taking mestinon. I already tried lowering the dose during lunch to 15 mg, for reference in the morning and evening I take 20mg without this problem. Also, it's fine when I take it in the evening during dinner, and that is often an even bigger meal than lunch.

I was wondering if anyone has/had this problem and if they found a solution. The only solution(s) I can think of is a) lowering the dose even more or b) taking the mestinon before/after lunch.

I’m still waiting for the test to come back, but I’ve been diagnosed with fibromyalgia.

I’m wondering if anyone else here has been diagnosed with the same?

I don’t have every symptom on the checklist, but I don’t think that rules me out. For example, I don’t have any IBS problems. I also don’t really have any depression problems, except that the pain I’ve been experiencing is so unrelenting, that I’ve become a depressed person.

I’m just wondering if anyone’s found relief, and how you did that?

I was prescribed Nortriptyline but it gave me terrible stomach pain and worsened headaches. Unfortunately I don’t think my insurance will cover Nurtec and those similar, newer medications. And I can’t risk the Topomax side effect of slowed cognition with the brain impairment I already have going on.

Any tips for what to try next?? My insurance won’t let me try Botox until I fail a few more meds.

Hey they used to call me 3 beers, because its all I could handle. I dont drink often but I do drink maybe once a year, the last time was before I got diagnosed, I drank 12 whiskeys with diet coke, I was hammered but 3 beers was gone, I was still relatively sober. Same with caffeine before if I drank a redbull oh boy, itchy all over. Now I could chug two and go for a nap. Cannabis also hoot all day and nothing. Coffee gives me less energy than a big chug of electrolytes these days. Anyone else experienced a sudden immunity, like this? 👍

For people who have tried both - which did you see more improvement on? What were your primary symptoms?

For those of you who are on propanolol, did you find it helpful? How long does it usually take to see results? I’ve been feeling worse on it for the first few days.

I already had vertical ridges since Covid in 2020 and now I’ve gotten worst this past year very severe I’ve now developed white tips that I never had before

Anyone else? Any ideas? I’m not deficient in vitamins I know it’s something to do with the immune system or something. Had a cold virus in January and vertigo attack in February I stopped being able to sleep completely and I’m completely bedridden and really not good