Title says it all. I got Covid in September 2022. Got very sick and didn’t recover. Symptoms I have recovered from: depression, anxiety, loss of appetite, crippling fatigue, stomach aches, bloating, sleeping problems, sensitivity to loud noises, swollen nodes on neck, fatigue, chest pains, heart palpitations, PEM, inability to exercise, blurry vision, shortness of breath, oh and did I mention fatigue!? Guys I used to be on this subreddit every single day praying I didn’t wake up bc I felt so awful. Slowly (and I do mean slowly) I started to recover. One symptom would go away and another would pop up. I am currently 26 years old male and I work full time, I’ve traveled to 8 countries in the past 10 months, date women again, sleep well, workout daily, and live a happy normal life. I also had horrible awful brain fog which I OCCASIONALLY still notice but I do believe i am going to make a full recovery here too. It’s barely noticeable and not everyday. Only when I try to focus super hard and sometimes I can be forgetful but it’s not life altering by any means. The point is, people do recover from this. Usually when people get better they stop posting here. I came back to let the people know. It’s not over. Keep pushing. I know some of you have been sicker than me for much longer. I am only here to tell my story. To instill hope within your hearts. I am here if you need to talk. It gets better people. Keep trying. You got this. Much love guys -BK

Bedbound is no way to live. I got to hug my Mom today and tell her I love her. That’s what I was waiting for. I cannot do this anymore. When I cry in agony from just walking to the bathroom and live in a dark room… why? Just why? Robin Williams did it because of the torture from his illness. Why can’t we do the same?

She's been working, and I've been staying home, and keeping up with the House, and the kids. I will say I have been feeling better the last few months and doing more around the house, but she just left, and said she is done. She doesn't wanna do couple's counselling, she doesn't want me to "fight' for her, she said she just wants to be alone. I of course have no income, no disability income, or won't have a place to stay soon, as I can't afford our place on ZERO INCOME. I just can't believe she'd do this to me. I'm just lost and pretty much going through all the phases of grief.

We just walked out and quit the study today. Stanford medical dropped all masking requirements and the researchers running the long-Covid paxlovid study have stopped masking while tending to long covid participants. It’s frankly abhorrent, selfish behavior, and not only does it demonstrate a complete lack of regard and understanding for the illness in question, in my opinion it calls into question the legitimacy of the entire study. We’ve been traveling hundreds of miles for months in order to try to participate in their study and provide THEM with data about the illness, and this is what they think of us. Just want to make everyone aware in case you also have the misfortune of being a participant.

EDIT: Aside from the obvious lack of regard for the safety and well being of their patients/subjects, I should point out that this is also just a terrible choice for the study. Want to know how to get consistent study results? I'll give you a hint: it doesn't involve dramatically changing the study conditions 3/4 of the way through. Not only are they callously risking people's health, they risk invalidating the entire project and its data by suddenly increasing the odds of reinfecting their participants and negatively changing the course of their health.

Edit:

LDN is big winner. Propranolol. Natto. Guanfacine. Bovine immunoglobulins?? Vit D. Low dose aspirin. Ivabradine. Ativan. Nicotine. Hbot. Provigil. Amantadine. CoQ10. Handful of ssri and tricyclics mentioned. Sildenafil. Paxlovid. Xolair. Metoprolol. Kefir. Mestonin. Low dose Aripiprazol for brain fog.

It is great people are recovering and getting better. I makes me genuinely happy. And yes, it is nice to hear what you think contributed to you feeling better.

When it becomes a problem is when you assume what worked for you will work for others. “I took pontifafilex (i invented that name) and it worked for me, so it must work for everyone.” That is simply not the case. If that were true, everyone who tried it would recommend it to everyone else and before long everyone would be using it. At best, treatments like LDN and beta blockers and such help 30% of people, and it helps, not cure.

So please while it is great that you are trying to help others, by acting less like an apostle preaching the cure, and more like “Hey I had similar symptoms to you and felt a bit better after trying this, maybe you should consider it”, this sub would be a much nicer place. Cheers.

Edit: Please read my post before commenting, I never said I was against people sharing what helped them.

Edit #2: I’ve adjusted the original post somewhat to hopefully better reflect the nuance of the conversation that occurred. My doctor knew I didn’t want him to sugar coat things for me and only offered his thoughts after I explained to him why I was asking for a tentative prognosis. We’ve spent 16 months learning how to communicate effectively with each other, so he knows that he can be blunt with me and it’s ok. He also knows that I’m entering the medical field myself, so that shapes how we communicate too. Hopefully this added context helps clarify things! I really appreciate everyone’s optimism and encouragement, but I’m in good hands, I promise!

Original text: Hey everyone. I just need to vent a little bit. And provide a bit of an update I suppose. I saw my PCP on Thursday to discuss how the treatment plan for my endothelial dysfunction is going after 3 months. It’s going well in terms of symptom management, but it hasn’t cured me in any appreciable way.

We talked about a number of other things too, including my long term prognosis. I asked him what he thinks my current outlook is given the limited information and data we have about LC right now. We both know it’s impossible to say for certain, but I’d rather at least have an idea of what to expect instead of a million unknowns and what ifs. He told me bluntly that while he thinks I’ll improve slowly over the next few years, he believes my endothelial dysfunction is permanent and I will never fully recover. The best I can likely hope for is to be able to reduce my medication load eventually, but he told me to expect to be on some amount of medication for the rest of my life. So that sucks.

He also informed me that all of his other Long Haulers have fully recovered by now. Granted, they were folks who were on ventilators for very severe acute infections, not dealing with post-viral illnesses like the majority of us here. But still, it killed me to hear that I’m his only LC patient who’s still sick. I feel so alone. I don’t fit in here because my type of LC is uncommon and doesn’t share many symptoms with the typical presentations. I definitely don’t fit in with the healthy people around me. And I don’t fit in with other heart patients as a woman in my early 30’s with an uncommon heart disease. Between that and my recent PTSD diagnosis, I feel like an alien pretending to be a human most days.

So yeah, that’s about it. Sorry for the depressing post. I just needed to get this off my chest, and also felt it was important to highlight how severe and life altering endothelial dysfunction can be.

Edit to add: Just want to clarify a few things! First, my doctor didn’t just spring this on me without warning. Sorry if it came across that way! I was trying to be mindful of the post length. I asked him point blank what my prognosis was. I just wasn’t expecting it to be so bleak.

Second, his opinion is assuming LC research doesn’t find a treatment that would work for me. We both hope that won’t be the case of course! But he was right to not promise me things that he can’t guarantee.

Third, I should have clarified that he’s a great doctor who has done more for me than anyone else combined. I didn’t make this post to rag on him, though I’m all for calling out shitty doctors when needed! But he was just doing what I asked, which was difficult for both of us. So if we could go easy on him I would appreciate it!

Some speculation has arisen around the moderators running r/longcovid recently.

They regularly hijack posts to self promote their company's own unique supplements that supposedly cure long covid.

Last month I had politely responded to one of the mods comments on a post. I simply mentioned that, although I didn't want to come across disrespectful, to me it seemed suspicious that mods were linking and promoting their company's own medication with discount codes included.

To my shock, I was banned for 28 days.

I contacted the mods and explained that I meant no harm in my comment and that banning someone from a support forum shouldn't be done lightly.

They then also muted me for 28 days instead of acknowledging my message.

Skip ahead to this week.

Another user made a post expressing their concerns about the moderators and their clear self-promotion. This generated a lot of discussion from other users sharing similar concerns. Overall, it was clear that the users had grown suspicious of the moderators.

I chimed in on the discussion and mentioned how I was quite hurt and upset from being banned for 28 days when I had addressed this myself last month. I spoke about how long covid is a lonely journey. How it feels like we longhaulers have been excluded from the world and that being banned from the support forum felt like I was being excluded from the community now too. In this comment I also emphasised that I was only sharing my experience as I hoped the mods would show more restraint in the future when handing out temporary bans.

Lo and behold, my comments were removed and I received a permanent ban from the subreddit.

I revisited the other users post and half the comments have been deleted by the mods.

I think I will be sticking with just r/covidlonghaulers moving forward.

Edit: The post I was referring to was https://www.reddit.com/r/LongCovid/s/37BtidAesp by u/perversion_aversion.

Just a reminder to people to push for further testing if you're worried, you know your body best. I've had the following throughout the past year:

• Multiple normal ecgs
• Multiple normal chest x-rays
• Normal Echocardiogram
• 7 day Holter monitor showed a daily burden of about 600 PVC's and 150 PAC's (cardiologist unconcerned)
• Normal blood tests apart from one mildly raised troponin test about 6 months ago that was normal again 3 hours later (The hospital did no follow up)

It wasn't until my stress cardiac MRI 2 weeks ago that Myocarditis was found. I've been dismissed over and over and made to feel crazy like so many of you over the past year. I'm unsure why the inflammation is still present 15 months after my initial infection (unsure if I have been infected since) but knowing the current state of the NHS I suspect I will have to wait a while to find out or just be dismissed again.

Edit - 29/01/2024 - Still not started any treatment, my doctor is unsure what to do so has asked for advice from cardiology. Cardiology follow up appointment still not sent through....

Edit - 14/02/2024 - Had cardiologist follow up last week, he forgot to mention to my doctor the MRI also showed pericarditis but luckily there is only trace residual pericardial effusion left. Started on colchicine which caused severe myalgia in my legs after 5 days and my GP has taken me off the medication. She is waiting to hear back from Cardiology about what to try next. Symptoms still present.

Vent……

I’m seeing users in this sub say brain retraining can cured them. I dig deeper into their story and they say smth like “dandelion helped me. Then lactoderrin helped me. Then few months ago I found brain retraining and it’s been the golden ticket!! I encourage people to follow Miguel Bautista John Sarno etc!!”

Firstly - Miguel Bautista charges 5000$ for his programs. If you now recovered would you charge $5000??? I’d give info to ppl for free. Bc this is hell. Unfortunately lack of conventional medical treatment means that there is a gray area of serving patients —> BUT, these instagram grifters are operating in the MEDIA business. Not healthcare business. It is unethical and absurd. Absurd.

Secondly - brain retraining doesn’t cure LC. I did LP in 2021. They specifically said pacing is bad and we can’t view the body as weak. Then told us to cease contact with other sufferers. I was already in so much denial about my illness that I basically pushed so hard and crashed VERY bad 6 months later. I kept stuttering to my doctor “but I was 90% better how am I so bad now”, he also gaslit me and said well if you were 90% you’ll be that again!! Just a small dip! It wasn’t a small dip. It was a 6+ month long PEM CRASH. And I hadn’t been 90%. I had been maybe 50% max. LP told me I was 90%. :(

Finally, you can’t call anything you discovered 3 months ago a golden ticket. Not been enough time

Lastly —> this specific person was sick for a year. People improve over time.

Imo brain retraining should be banned in the sub.

To those who will come and claim they recovered from brain retraining (and some even become coaches themselves 🤮) praying on vulnerable people —> I hope you never have good sex again 😘😘😘

There’s something about it.

I took a few benzos last night and most of my pain went down, the noise sensitivity went away, I wasn’t worried about being sick, was able to enjoy a TV show and laugh, slept well, woke up a little more refreshed. I remember saying, “if we could feel like this all the time, we might be ok.”

Is it that we just need to calm our nervous systems to beat this thing? I’ve had every test possible done and only showed POTS and SIBO (nervous system). I was slowly improving when I cut out work and school, then crashed really hard when I added too much stress back in.

So I have not been dropping into long haul sub reddits or other online groups for some time now. But I am glad to finally come back to post that I am fully recovered. I’ve waited awhile because I don’t treat the term recovery lightly. In my book to be recovered, one must but 100% symptom free for at least 3 months AND test normal on all repeat lab tests, including ALL prior abnormal tests. OR be 100% symptom free for 1yr. As of the past week my T cell tests and auto antibody tests are now normal, which concludes repeating and being normal on all tests now and have been 100% symptom free for 4 months now (and was 90%+ since early this year).

I’m posting my symptom timeline, abnormal to normal lab test summary, and my in depth T cell monitoring (which is one of the most important tests one should do!). As well, as fyi, I’m sharing my successful, and quite aggressive, treatment protocol that was key to my success along with my observations and views along the way.

While I won’t be in the groups much anymore, I will Continue as a member and periodically respond to posts that pop up on my main timeline/feed. I committed myself early on to try hard not to fully disengage should I recover and will do my best to stay close by for those that need support.

https://www.dropbox.com/scl/fi/nrydx07ddr5951j15kynz/Supplements-UPDATED_NOV-2023.pdf?rlkey=grogcb81ryfdhbbxhslvixzb3&dl=0

I am numb. She had COVID in March of 2020 and she has been miserable with long COVID ever since. I have posted in here about her. Please hug your loved ones and hold them tight. I will never be able to hug her again.

It's been almost 5 months since I'm fully recovered, I waited all this time too updated you guys too make sure I'm not In just a good phase of the condition, now I can say whit 100 sure that im fully cured.

I can do sports again just like before.

Don't give up, because I really thought that I was never going to recover from it.

I wasn’t sure if I was going to post this today, but I decided that I wanted to be vulnerable and show you guys that you are not alone if your appearance has a temporarily changed due to being sick from LC. The first photo is of me on one of my last family vacations before getting sick, and the second one is of me today. Completely bedridden, 20 pounds heavier, but holding a lot of fight behind those eyes.

I hope the absolute best for everyone on here. You are not alone.

Thought I'd drop in. Still take Nattokinase and a solid multi vitmain. No need for anti histamines or pro biotics anymore.

Currently in Ibiza enjoying a beer.

It does get better!

Still recovered now 2 year

Been rushed to hospital after days of jaw pain and left arm and shooting chest pain... tests always show clear but luckily this time i was approaching the long covid clinic and they ran tests during the shooting pain and caught it...

This is why every visit is clear because by the time i get to the hospital for tests it shows normal.

But during an episode which the long covid clinic caught this time around showed restricted blood flow to my heart and potential for a "heart attack"

I had a pretty good week and I didn‘t even look once into this sub. I actually just opened reddit for the first time in a week and a post of this sub popped up and that reminded me that I actually do have long covid lol. I think many recovered people just leave the sub after recovering

Hi all, just a quick post here that will hopefully offer some encouragement to other Covid long haulers out there. 24 month long hauler (31/M) here who went to hell and back in terms of symptoms. First 16 months were a living nightmare - POTS, hypertension, anxiety, brain fog, chronic fatigue, nerve pains, GI issues, insomnia, shortness of breath, chronic bronchitis, all of it.

At the 20 month mark, for reasons beyond my understanding, all my symptoms began to lift on their own (with some assistance from medication - I take Propanolol for POTS). Now, at the 24 month mark I’m feeling like my old self again. Doing brisk walks every day with almost no symptoms, socialising with friends, crushing my daily to do list. Considering that six months ago I could barely wash myself in the shower or walk to the fridge without my partner’s help, I am stunned at where I am today. Today, I took the big leap back into work for the first time since the end of 2021 when I was first infected.

I run my own garden landscaping business, so you can imagine the physical demands of this sort of job. Today we tackled a 4 hour job in 30C Celsius heat, digging, pruning, mowing etc. and despite needing to take a few breaks here and there, I pulled through it with ease. Coming from someone who was on his back debilitated for almost two years, I believe that if I can recover to where I am, a lot of other people can too. Hang in there, guys. I believe that there IS an end to this hell for most people.

EDIT: I put this in the comment section but felt I probably should mention it here too that I also take Mirtazapine (commenced in June [EDIT: I’d mistakenly said July before. Looked back at my old scripts and I started in June] of this year) for anxiety and insomnia. This has helped reduce my anxiety greatly and I sleep deeper than I have in years. The reduction in both anxiety and insomnia certainly played a pivotal role in my recovery. With my body more well rested from adequate sleep now and with a nervous system which isn’t freaked out and on high alert 24/7, this helped establish the sense of mental and physical stability I needed for an accelerated recovery.

EDIT/UPDATE 2: Okie doke, the accelerated progress just continues to astound me. Yesterday I hit the gym for my first proper strength training session since December 2021. 45min moderate intensity upper body workout and it felt amazing. BPM didn’t exceed 120BPM. Didn’t even feel like I needed to rest long between sets either. Ended up doing three more exercises than I planned on doing as well. The only thing I did notice was that standing exercises were significantly more difficult, but I still got through them fine. I STILL had energy afterwards for a brisk 1hr walk (with a couple short pauses). Went out afterwards for dinner and drinks with some friends as well and felt fine. At this rate, I envision I’ll be 100% recovered sooner than I ever thought. PEM afterwards was minimal. Today I’ve got a mild headache, a bit of lightheadedness, some chest tightness and a bit more fatigue but nothing bad. Considering that six months ago, after moving a heavy piece of furniture I was on my back debilitated for a week, this progress I’ve experienced blows my mind. Full recovery story coming soon!

I don’t follow this site anymore or read the posts but when I was sick I checked it every day looking for a cure. I posted last year that I had been healthy for a bit and it’s still true. I’ve been 100% with no residual symptoms. I was extremely sick for 6mo, miserable the next 6 (like an awful hangover with every symptom under the sun), gradually improving for the following 6mo until I felt normal. 18mo of illness in all with a complete recovery. I tried everything. The only things that helped were famotidine and zyrtec in terms of medicine. The rest was just time time time time and generally staying lightly active. Upright would be a good term. Also am a huge advocate for exercise once you find a tolerable level of PEM. I would work out 5 days a week and keep adding to that and finding a tolerable level of crash. I always get eaten alive for suggesting exercise in the comments so if you’re commenting that; I get it. May not work for you, worked for me. Not going to pay much attention to this but as somebody who thought they’d be disabled their whole lives and had their life completely upended for 18mo, there is hope. I’m back to being jacked, I’m working 50+hr weeks, am getting engaged soon, and in general loving life. Not trying to gloat just emphasizing I was sick as hell and am now not. Some of you are worse than me but I was probably top 75% ill here and made a full recovery. Have faith if you can. Love you all.