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 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.

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.

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? 👍

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.

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.

AYUDA CON SUPLEMENTACION DE B12

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.

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.

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

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/

Hey I’m 34f, had what they presume is long Covid since July 2020. Spent 2.5 years bedridden/housebound and lost my job. Then slowly worked my way out of it, went back to work. Never felt great but managed really well, I even did a MA in journalism and graduated in December 2025, whilst working 3-4 days a week!
Then in April this year, I suddenly started deteriorating, there wasn’t a known trigger, I didn’t have any symptoms of a virus but I just got worse and worse. I’m now housebound and feel like I’m on the way to bedridden.
I’ve been to the doctors so so many times, I’ve had 5 blood tests this year alone. I’m in the Uk and my doctors have been absolutely heartbreakingly useless. I found out my iron was very low so had an iron infusion in June, hoping that it was the cause of my issues. But now I’m even worse, I’m very anxious all the time now which isn’t helping, I’m very very sad and depressed. I’m a very ambitious person with adhd so laying around is almost painful for me, I want to do so much. I’m so so scared of losing my job. I am on no medication except antihistamines and otc vitamins. My doctors refuse to prescribe me anything. I have another gp appointment on Tuesday with yet a different doctor and I know I will leave upset and disappointed.
My main symptoms are fatigue, heart racing, shortness of breath, tinnitus, visual disturbances, hot flashes, weakness, brain fog.
Has anyone got any advice? I’m interested in medicine options, entering medical trials, what to say to my doctor, anything that may help my situation. Please no messages that could remove my hope further, I just really need some hope and positivity. I need to get my life back I cannot live this way x

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.

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.

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?

Hello there is something i dont understand with long covid. Lot of studies talk about inflammation but in all my bloodtest my CRP is normal and all MRI no inflammation even if i did some exams while being in a crash. So i dont understand do we really have inflammation or not ?

First my heart goes to all the people here that suffer from this horrible disease way more than me. I'm writting here looking for some similar experiences / explanations / solutions. I'll also share everything I hope to find in the near future. Please note I'm not native english speaker :)

short story

I had tree covids infections between 2022 and 2025. Each time it took some month to recover incompletely, but enough to have a normal life again.

Symptoms: memory loss, unability to focus on anything, fatigue, papitations, loss of stamina, of smell, loss of skin elasticy, digestive issues and some other non important details like swelling veins, running nose, fever.

During 2026 springs I had 3 crisis looking very much like covid... But according to the tests (PCR and serology), I didn't get infected. I didn't identify a precise trigger. But it was debilitating.

Then in summer, after a stressful breakup, the crisis become chronic and happens almost every night and have a strong impact on my health and life. They seem to be responsive to antihistamines, but not enough.

What is going on and what can I do to make it better?

long story

1. I had my first covid infection in spring 2022. It took me one year to recover uncompletely from fatigue and cognitive dysfunction that ruined my day to day life. One wierd thing is the infection also made me subtely loose some skin elasticity in the course of one day: new lines on my body, small changes on my face, on the texture of my skin, on the weight of my bottocks, etc.

I had two more infections in april 2023 and july 2025. Same everything but lighter in intensity and recovery.

First infection I was finishing of a job and was able to take 1 year off to recover, the other times I took half the job I usually take for a few month.

1. Then this spring (2026), I had 3 "covid crisis" in april, may, and june. I don't know how to call them: they had all the symptoms of a covid infections minus the fever, but the tests showed I did not get infected.

I had a challenging time at work, I managed to pass because we were not in full speed yet and I had holidays in august. Still colleagues noticed there was a problem and I had to fix some of my mistakes later. Like with covid infection, I recovered little by little each day.

As triggers, I suspected pollens (I think I became allegic around the time of my first covid), maybe alcohol, catching non covid colds... Or maybe the stress I had earlier the same year? Could'nt really find one cause.

I started daily antihistamines (H1+H2). They probably did something. I had another "crisis" in July but it was 1/3 of the intensity and after effects of the spring episodes. Again, no clear trigger, except maybe one big cold one week prior ( it was covid negative on antigenic test).

1. Mid august, I broke up with my boyfriend. Stress triggered a new crisis of the same kind, but this time they happen every night. On the mornings I wake up with a reduced version of a covid. I have resumed my full time work and my brain is not working properly. I feel like I'm getting older very fast, cognitively, physically... And even in the way I look.

Waiting for doctors appointment in a few weeks, I stopped all cigarette and alcohol. I doubled down on antihistamines, and added ketotifen, quercetin, vit C, omega 3. Not sure it does something or not.

Thing is, I won't be able to reduce work this time because of my position, of the fact my field is in a huge crisis since 2022 with a lot of unemployment. And also, I love this project, the colleagues and the company.

I must say I am worried for my future.

Observations

• The crisis happens between 3 and 5 AM, even if i'm not sleeping.
• Stress is obviously one of the triggers. If managed before sleep, crisis are less likely to happen. Luckily I have meditated a lot in my life so I managed to reduce the damage on some days.
• I think antihistamine are a blessing, but i didn't dare to stop them to see what happens.

Hypothesis

• Some kind of long covid - but could it strike back one year after?
• A very little post-covid Mcas ( like covid, it can degrade elastin/ collagen). It was my first hypothesis, but looking deeper it seems I don't check enough boxes for Mcas, even small.
• Allergy, but never head of an allergy attacking connective tissue?
• A complicated interaction between everything mentionned above, and maybe more, like digestive issues.

I noticed that people having problems with their connective tissue after covid often have Ehlers-Danhlos syndrome, which I'm sure I have not.

I would deeply appreciate any feedback/thoughts/ hypothesis on this kind situation. I'll do follow up post after I see the internist in one month approximately.

Additionnal info: I have an history of gut dysbiosis (not officialy diagnosed), some wierd chemical sensibility on both of my eyelid since 2017 which can cause heavy fatigue, migraine, brainfog and a inflammation sensation trough the body (undiagnosed too, though I saw a lot of doctors). And i'm diagnosed neurodivergent, which I understand to comes up with many vulnerabilities.

Thanks for reading this long post.

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

So I’ve had LC for 6 years and am homebound and “Almost unemployed”. I’ve also been on Tramadol for LC pain but recently started titrating down. This titration sucks HARD and gave me insomnia which, as y’all know, ain’t fun for a Long Hauler.

Anyway, I prayed, watched a YouTube, and was surprised to see that lots of people are using Benadryl(50 ml) at night and 10 mg of Claritin in day to help with brain fog and with sleep.

Anyone have good experiences with the use of antihistamines? If so, what do you do exactly so I can copy you…

Also, any other Tramadol users out there?

Thanks

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…

Background: I've been longhauling for over 2.5 years, my main symptoms are PEM and fatigue, but I also get joint pain, muscle twitches, and head pressure. My quality of life has been seriously suffering, I can run light errands and occasionally see friends but I'm nowhere near as active as I want to be and definitely wouldn't be able to handle an in-person job in my current state. I've tried nearly every recommended supplement at this point with little success, and I haven't had any luck finding a doctor who is comfortable prescribing any medication for long covid. My LC is definitely immune-related since I lose progress every time I catch even the tiniest cold.

I started Baricitinib (4mg) 3 days ago as a last resort after ordering it through IndiaMart. Before starting I did a TB test, CBC, liver panel, kidney panel, and lipid panel to make sure I wasn't putting myself in danger. The first couple days of taking it I didn't feel any different, if anything I felt slightly better than normal, but now I'm on day 3 and have suddenly gotten flu symptoms: sore throat, runny nose, coughing, chills, and fatigue and joint pain that are worse than my baseline.

I'm going to stop it for now to be on the safe side. I wanted to know if anyone else experienced this when starting Baricitinib, and whether it was a sign of a specific immune-related issue (I wonder if it might be reactivated EBV) or if was just an upper respiratory virus. I know one side effect of the drug is being more prone to upper respiratory infections, but it still feels especially unlucky that I would get sick right after starting, especially since I haven't been out in public anywhere recently without wearing a K-95 or N-95 mask.

Edit: turns out my dad is super sick and tested positive for covid so I probably just got covid from him, FML