Long time lurker, first time poster.

I've been sick with Long Covid since May of 2022. I have tried pretty much every treatment I can think of with little relief of symptoms. I suffer from chronic headaches and extreme light sensitivity; I can't leave the house without theraspecs and a hat and then I can't be in the sun for very long. I have body aches every day. My body FEELS inflamed. I have MECFS, which is probably my worst symptom. I am SO SICK AND TIRED of being SICK AND TIRED. Subsequently I've had three infections in the last 2 months requiring antibiotics (just from being out in the world). I just got over a c-diff infection that lasted 6mo and I still have post infectious IBS from that infection. I can't get out of bed without 30mg of Vyvanse. My depression has become treatment resistant. I might try ketamine next, but I don't have high hopes.

I've been seen at UCLA in their Long Covid program. At my last appointment they said "We have nothing more to offer you. This disease has no cure. You could try Stanford." It took me 4 months to get into that program and I took a 6mo leave from work. I paid a doctor $5,000 to be my "concierge doctor" and he helped me get into the program. I've tried Stellate Ganglion Blocks. I've tried IV NAD+, I've tried low dose naltrexone (which DID WORK-- but then stopped working after a few blissful months). I have a great therapist and a great Psychiatric NP. I take about 10 prescriptions and another 8 supplements. I don't even feel like any of it is really working.

I've seen so many people post "I'm just surviving, not living." And that resonates with me so deeply. I'm 43yo. I was never sick before I got Covid, and I've had it 5 times. I'm a nurse, or at least I was, I just had to quit my job. I'm just too sick to work. I've burned through all my savings. I just sold my car so I can pay rent. I'm renting my house out but it's just a matter of time before I have to sell it so I can continue to survive, not live. I have legitimately spent tens of thousands of dollars on this disease. Last year I spent $13k alone. And I'm about to lose my health insurance since I've had to quit my job. I suppose disability is an option but I know another nurse who went down that path and it took her 4 years to prove her disability. I don't have that kind of fight left in me.

I feel like no one really truly understands, and that is so invalidating. I'm not willing to continue down this path for much longer. I don't have any hope that there will be treatment for what we have. UCLA was clear that there isn't any government funding for research (yes they are doing some but the physicians doing it came from other places and brought that funding with them).

Which brings me to the title of this saga: how much longer do I have to survive? The quality of life is so so poor. I too, like others on here, have accepted that I will remain alone. I was married. And like others, he couldn't deal. I don't blame him, I wouldn't want to be with me either.

Life is meant to be lived. And I can't live mine. How much longer y'all? How much longer?

Question

I’m 39. For context I have hypermobile Ehlers Danlos and Long COVID, and I’ve been doing pretty well until about a month ago when I crashed after a long period of extreme stress related to elder care. I injured my right hand, and I’ve been having on and off joint, muscle, and nerve pain all over my body plus intense fatigue. I have a doctor who specializes in EDS who wanted to run my iron levels, which I agreed to despite the fact that I’ve always had higher than average hemoglobin and iron stores. Turns out: anemic. I don’t know if this is related to Long COVID, EDS, something else, or a combination! My vitamin D and thyroid levels are already monitored, and I am on a D supplement and levothyroxine. For the last few weeks, I have been barely able to get out of bed due to pain and/or exhaustion. I’m thinking of asking for a CBC to find out my WBC. Is there anything else I should be thinking of and/or asking my doctors for? I can’t continue to live like this with all my commitments—work, home, family, etcetera—waiting on me.

I follow a lot of influencers who have post viral illnesses and health conditions. And let me tell you, it helps a LOT to see their experience TRULY helps me feel less alone, but one thing I can’t help notice is how all of them have partners who help them, all of whom they met BEFORE they got sick. Not making sweeping assumptions, just what I’ve seen personally. And to be honest, it’s so helpful seeing how they speak to and care for their loved ones and really get to understand them.. it’s the sweetest thing ever and gives some hope good people are out there! However makes me wonder if anyone is going through the depths of LC exacerbations alone here, how you manage, questions whether they will meet the right one while sick, or if someone has met their partner while actively sick between flares. 🫠Just curious if anyone else relates. Or, someone out there who met their significant other while sick and can touch on that experience of how their partner adapted to your situation and such. Give us some hope here!!! I know it is hard to find a friend who even understands and will not have triggers around for a few hours, understands needs to cancel, it significantly affects relationships, so wondering how that experience is for you all, too. Also feel free to just vent if you need to.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

This podcast is a very interesting interview with professional athlete Oonagh Cousins, who had been chosen for the British Olympic rowing team before experiencing Long COVID which ended her career.

Feel free to skip to 2:56 to bypass the introductory fluff.

If you're annoyed by podcasts, fortunately there is an interview transcript on the page.

The discussion covers: relapsing due to pushing through fatigue to train again, medical gaslighting, other athletes experiencing limitations due to LC, test results that turn out fine even while the patient is obviously not, ignorance in the mainstream and the medical establishments, personal identity as a professional athlete who cannot be athletic, and scam treatments.

I’ve been dealing with Long COVID for years, and I honestly never thought I’d be writing this.

For context, my main symptoms weren’t just fatigue. I developed constant brain fog, severe anxiety, PPPD (Persistent Postural-Perceptual Dizziness), air hunger where I always felt like I couldn’t get a satisfying breath, GERD/LPR, IBS, low energy, depression, chronic aches, and this constant feeling that my nervous system was stuck in overdrive. Bright lights, busy environments, supermarkets and anything overstimulating would make me feel awful. Every day felt like I was surviving rather than living.
I’ve tried so many things over the years. Some helped a little, but nothing ever made me feel like my old self again.

About a month ago I finally decided to try retatrutide. I was actually terrified to inject it and almost talked myself out of it. I started on a very low dose (0.5 mg), and after the initial anxiety of giving myself the injection, something unexpected happened.

Within days I felt… calmer.

As the weeks went on, it became more and more noticeable.

The biggest change has been my brain. The brain fog has essentially disappeared. I can think clearly again. I can concentrate, hold conversations, and actually feel mentally sharp. It’s honestly hard to describe unless you’ve lived with brain fog for years.

The anxiety that constantly sat in the background has dramatically improved. My mind feels quieter instead of racing all day.

The craziest improvement has been my breathing. For years I had that horrible “air hunger” feeling where I could never quite get a full breath, despite normal oxygen levels. Since starting retatrutide, I can actually breathe deeply again. Taking a full, satisfying breath is something most people never think about, but after years of struggling, it’s an incredible feeling.

My PPPD has also improved massively. I feel steadier, more grounded and much more comfortable in busy environments that used to overwhelm me.

Even my gut seems happier. My IBS symptoms have reduced significantly, my reflux is better, and I generally feel like my whole body has less inflammation.

Exercise feels enjoyable again instead of something I have to push through. My mood is better. I have more energy. I don’t constantly think about how sick I feel anymore.

I’m fully aware this is just one person’s experience, and I’m not saying retatrutide is a cure for Long COVID. It may not help everyone, and there’s no evidence yet that it treats Long COVID directly.

But for me?

It’s been life-changing.

For the first time in years, I genuinely feel normal again.

I forgot what normal even felt like.

I’m smiling more. I’m looking forward to the future again. I don’t spend every day obsessing over symptoms or wondering if this is how I’ll feel forever.

I’m posting this because if someone else out there is experiencing what I went through, I want them to know there is still hope. Recovery doesn’t always happen the way you expect.

Has anyone else with Long COVID noticed improvements while taking GLP-1 or GLP-1/GIP/glucagon medications like retatrutide, tirzepatide, or semaglutide? I’d genuinely love to hear whether anyone has experienced something similar.

I’ve had long Covid for 5 years now. The symptoms are bad but almost worse is the lack of any social contact. I genuinely feel like an old man that can’t leave the house and is lonely af. Ive kind of forgotten how to even socialise properly too.

For real why are all the Reddit post about this being deleted? Like this could really be a real solution for long COVID and PVS.

Almost 5 years w LC. Hardest years of my life physically, mentally and emotionally. Fighting “the system” to get what I need. My husband has been the one stepping up to help me out. He was just diagnosed with cancer. Malignant tumors but treatable with chemo. It means that now I have to step up. I have to be the strong one. The one that keeps the home. The one that gives support. The caretaker instead of the ill. We are both in our 40s. Trying to take it one day at a time. Nervous system in extra overdrive. Post exertional malaise hitting me even harder… how TF I’m going to do this?!?

Hey folks,

So I had COVID in the summer of 2022 - I was out for almost 5 weeks, very sick - soon afterwards, my cough was persistent, and I continue to cough up daily bloody phlegm. Since then (4 years later!) I still have this persistent cough, I still cough stuff up most mornings (and if I don't, I literally feel like I'm drowning in my own phlegm, it's so awful), I have chronic fatigue, and post-exertion malaise. I've been told it's post-nasal-drip and have been given al lthe sprays and nothing has worked. My life has never been the same. I am finally getting a CT scan of my lungs in a couple of weeks. My Respirologist has done extensive testing and everything "looks normal" in my lungs. No asthma, yet walking up a hill feels like I've sprinted a marathon (I used to be a runner and very, very active, and no longer can do the sports I used to do), and I am bent over trying to catch my breath. For gods sakes im in my 30s. Covid ruined me and my mental health declined drastically, like so many have already mentioned. It's such a vicious cycle with the stress of it too, and chronically feeling like your body is fighting something.

The weird thing is, though. I was in Bali for a month, and the cough and phlegm went away within a week. I mean Bali is Bali and I had very little stress there and now am wondering about the climate I live in and how stressed my life is (which is made worse with long covid). Has anyone experienced this? I live in a very dry climate and wonder if the humidity had something to do with it but man, it was glorious.

Also, has anyone been able to resolve the PND or phlegm build-up (whatever the hell it is). It's so frustrating.

I would like to know, of the people who suffer with long covid that read this, how many of you got an mRNA vaccine? Please comment an answer if you read this it would mean a lot, it’s unclear to me what proportion of long covid sufferers had an mRNA jab relative to the long covid sufferers who did not. I’d find this information very helpful.
Thank you

https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964%2826%2900222-7/fulltext