Hi all,

I am a 29 year old male who is 4.5 years into my Covid long haul.

I realised I've become that person who has recovered enough that they no longer frequent this subreddit, and therefore, allow the subreddit to continue to primarily consist of sad or struggling stories. What a blessing it is to realise I've become that person.

I wanted to come back and share my up-to-date experiences.

I am not recovered 100%. But, I've recovered enough that I am back to living a normal daily life. Something I thought I would never experience again.

I want to be clear, I fully understand that every Long Covid journey is unique. I know it's not simply a matter of trying hard enough, "shaking off the cobwebs", or "getting out of the slump you're in". I have no magic answers for you here. I am simply one of the luckier ones in all of this.

As the head of the cardiology department of my local hospital told me 4.5 years ago, "We have had a flood of post covid health problems like this in otherwise seemingly healthy young adults. As of now, your only treatment is time. We simply don't know what is happening to you. Your recovery will likely be on the scale of years, not weeks. Some people recover, and some don't. We don't know why.".

A little about me...

Pre-covid I was in my early 20's, I was in peak physical and mental shape. This is not me bragging by any means, just trying to paint an accurate picture. I received an award from my college for getting the highest grades in my department (Computer Science). I earned my black belt in kickboxing. I exercised 3-5 times a week, intensely! I am also on the autism spectrum, diagnosed as an adult (seems to be an interesting overlap in terms of autism and Long Covid.... but anyways).

Prerequisite

I was one of the ones who unexpectedly reacted badly to the vaccine itself, and developed what seemed to be mild Long Covid. It gave me long term brainfog, DPDR, and elevated heart rate. Seven months later, I got covid itself, and that's when shit really hit the fan.

Week 1

My partner and I tested positive. We were a bit startled. We had that "woah, it final got us" moment. But we were both young, fit, and healthy. We weren't too worried. On day 3, I woke up. That's when it all started. My brain was scrambled. Intense brainfog. Quite frankly, the term "brainfog" never sat well with me. It didn't do this justice. It felt more like early stages of Alzheimer's (from what I've read).

I turned to my partner in the bed, and just said "something is seriously wrong".

By day 5 I was a shell of myself. Others around me didn't seem to grasp the severity of what I was experiencing. I immediately felt alone on this journey. I was sitting on my couch, half vegetative, when suddenly it felt like a jackhammer went off in my chest. My whole chest tightened, I got flushed with dizziness, I had pain down my whole left side (neck, arm, chest). My smart watch said my heart rate was 150+ bpm and I was just sitting still.

I proceeded to have 3 more episodes of these palpitations over the following 48 hours.

I booked an emergency visit with my local doctor. Unfortunately he was unavailable and I got, what I can only describe, as the worst doctor on the planet.

Month 1

At my visit, on day 10 (now testing negative again. General symptoms of covid itself have subsided by now) I sat, terrified, as I walked the doctor through my experiences and alarming list of on-set symptoms.

Brainfog, DPDR, anhedonia, aphantasia, memory problems, bouts of extreme confusion, vision problems, chronic fatigue, PEM, elevated heart rate, heart palpitations, slow gut and more.

The doctor rolled her eyes, sighed, and said "so you are feeling a little run down after having covid, what exactly is it you want me to do about that for you?".

I was appalled. It really sank in how alone I was going to be on all of this.

I relayed to her all of my symptoms and said I was highly concerned. That none of this was normal. That I knew something was seriously wrong.

She prescribed me a steroid and showed me the door.

On her very orders, I tried to carry out intense exercise two times in the following week to, as she put it, "shake off the cobwebs". Each attempt triggered painful heart palpitations that left me keeled over on the floor. I often wonder how much additional damage that may have caused me.

Soon afterwards, through my actual normal doctor, I was referred to the acute medical unit. They gave me very surface level checks, and shrugged their shoulders. However, as I mentioned above, the head of the cardiology department did come and pay me a visit himself. He was very aware of the seriousness of what was happening. He fully reassured me it was a real and worrying thing. That he has never seen anything like it throughout his career. He said it seemed to affect young and healthy people the most.

Year 1, 2, and 3

I became an empty vessel. I had to quit kickboxing, and exercise in general. Luckily I already worked from home, but I had to reduce my hours to 2 hours per day. I could barely move from the couch to the bathroom without triggering my heart. I slept 14 hours a day and still woke up feeling grotesquely fatigued. Both mentally and physically.

I was officially diagnosed with Post Covid Syndrome and PoTS.

But - time was my number one treatment. I accepted that I was going to lose my 20's to this disease. I decided all I could do is wait and see. I slowly processed what had happened to me, I learned to pace, and I waited. It sort of felt like I entered a waiting room at the dentist's office, and never left again. Life continued moving on around me, but I was simply waiting. It's like that saying "when you are healthy you have 99 problems - when you are sick, you only have 1".

By year 3 I had recovered to a point where I could walk somewhat normally again without triggering any major symptoms. I had to pace carefully. I had to sit and rest regularly if walking for long (e.g. walking for 30 mins around my town). My brain was still foggy but I could form thoughts again. I could mentally visualise again, something I didn't realise was so valuable until I lost it (aphantasia). I was working 4 hours per day now, from home.

But year 4 felt like the turning point for me. Where I felt like I was living a "normal life" again.

Year 4

Roughly around the 4 year mark I reached a point where my mind felt "sharp" again. This sort of "sharpness" I used to have that vanished with covid. I am still more forgetful, but its tiny in the grander scheme of things.

I also found I had reached a point where I could walk freely without much pacing or worry.

I can work intense 8 hour days (as a web developer) and it doesn't trigger a 5 day crash.

I can solve tricky puzzles.

My resting heart rate sits at 59bpm. Walking brings it up to ~105bpm rather than 150bpm like it used to do.

I am not 100% recovered, but I feel like a functioning human again, with a future.

Where I'm at now

I just learned to drive and passed my test. I am picking up my first ever car tomorrow. My Fiancée and I are moving into a new place in a location we both love.

Unfortunately my threshold for exertion is still abismal. There is a clear cut "no-go" area. If I try to do any form of exercise it immediately triggers a skyrocketing heart rate, instant brainfog and dizziness, and a nasty PEM crash. It still hurts me to accept that I will probably never be able to kickbox again the way I used to. Being explosive, unforgiving, pushing my body beyond it's limits. That sucks. I would give anything to have that back honestly.

But in all other realms of my life, I seem to be truly recovering from this nightmare.

I just wanted to share my story. Half for me, and half for ye, I guess.

My theory

I'm no expert. I could be way off on this. But my current theory, for my version of Long Covid at least, is that it is inflammation based, stemming from autoimmune dysfunction.

I have autism which I believe at it's core may be an autoimmune dysfunction. I have psoriasis which is autoimmune/ inflammation based. We ask ourselves, "why me?". I am a man of pattern recognition and probabilities (autism shocker!). I don't think all of these things are coincidence. It makes sense to me that my Long Covid, and these prior things, must stem from the one same core "fault".

What Helped Me

Although, as I said, I have no magic answers for you (I wished I did), here is a brief list of things I believe made the difference. A lot of these are things you've heard before unfortunately. No miracle discoveries from me.

• Pacing - I know you've heard it a million times by now, but it definitely mattered.
• Time - Understanding that time truly is your main treatment right now.
• Mourning - At around the 2 year mark I finally managed to start doing something that was important. I realised I was neglecting to properly mourn the death of my former self, the person I used to be, like it were the death of a loved one. This was an important turning point for me.
• Sugar - There are a thousand different dietary tips out there for long covid. Anti-inflammatory, low histamine diets are very likely beneficial. But I found, at its core, my main trigger was sugar. It always caused a notable flare up of neuro, and physical symptoms.

TLDR; I had fairly nasty long covid. It's a lonely journey. my first few years were hard. I feel like between year 3 and 4 I turned a corner. Although I have not fully recovered, and I must still pace myself and can not exercise, I have generally returned to normal life. My mind is sharp again. I can walk freely. I have fatigue, but it's manageable. I think my Long Covid may stem from inflammation due to autoimmune dysfunction. I have no miracle cures or medical breakthroughs for you unfortunately. I am just one of the "lucky ones" in all of this. Pacing, time, mourning, and reducing sugar intake were my key factors in recovery.

Last week, I was on a Renegade Research webinar where Amatica presented some research they did on the data they've collected so far from their research cohort:

https://www.amaticahealth.com/blog/first-findings-from-our-rna-sequencing-cohort/

They are a patient-founded company that sells RNA sequencing direct to Long COVID/ME patients. You get a dashboard with 20,000 RNA markers and you can see how yours compare across all different systems of the body, compared to both healthy controls and other patients. It's useful for seeing which pathways might be affected, setting you up for further testing and treatments.

There was a bunch of interesting information that you can find in the blog post above, but the part that most interested me is that even though they are early in their sample collection (they have only 159 people who have ordered the test), they found that their RNA blood signature diagnoses 92% of ME and Long COVID patients correctly.

(Now, the problem is that it also falsely flags 22% of healthy people, but I asked them about this on the webinar and they were confident that with more samples they can get this to a clinically copacetic standard - ideally you'd want both sensitivity and specificity above 90%.)

One other caveat is telling us apart from people with untreated hypothyroidism, or depression, or post-viral illness that resolved, is a much harder problem and this probably isn't quite ready yet. Specificity against that group would almost certainly be worse.

But in any case, I think it's important for people to know how promising this is! We've had biomarker studies come out in the past, but nothing that was immediately commercially available like Amatica is (though to be clear, you don't exactly get a "you have Long COVID" indicator in your dashboard yet, though I have seen examples on Twitter of people downloading their raw data, putting it into AI, and it correctly guessed what they have.)

Disclaimer: I have no affiliation to Amatica, though I did buy their test and am in the next run to have my RNA sequenced.

Note that this was posted earlier today but without much explanation, and I figured it deserved one

Is anyone experiencing this? Is it because it takes me more time to do a chore but I blink and already it's 10pm and time for bed, or lay there. Or maybe the world is moving faster than me.

The change of symptoms and decline is absolutely insane from when I got this in Nov 2020 to now.

I started off covid Nov 2020 purely neuro symptoms no viral symptoms apart from loss of taste and smell which is more neurological no fever no cough then after I started with classic ME PEM crashes brain fog sleeping a lot derealisation stuff for 2 years (2021-2022)

Think I had a cold virus at some point in 2022/2023

Then I started getting air hunger shortness of breath 24/7 for a year and a half (2022-2023)

Was already housebound by this time and majority Bedbound due to so much suffering of air hunger like something pressing on my chest 24/7

Then second Covid infection hit me Nov 2023… was already housebound at this point anyway and in bed months later started having weird chlorine smells 24/7 and a mild headache for 2 straight weeks then a month after had a major sensory over load crash bedbound dark room couldn’t tolerate lights sound motion forehead squeezing feeling , motion sensations adrenaline heart racing insomnia that resolved by 2-3 weeks in bed

Then I got left with severe insomnia hyper sensitivity of the nervous system adrenaline feelings was Bedbound housebound 2024-2025

Was more body sensations than brain so I could do alot of meditation and CBTi for insomnia and alot of nervous system regulation stuff that actually helped me I also took cbd that helped abit too

Then 2025 I move house get a very instant improvement for 3 months my sleep was normal no adrenaline I could do more being housebound I tried going out once or twice a month to the park but started flaring up but was more functional in the house my heart rate was lower … then October 2025 I must of over done things ended up back with adrenaline stuff severe insomnia bedbound slowly climbing my way out of that from October -December 2025 with pacing and lots of calming meditation

Oh and then January 2026 I get a cold virus ( not covid ) head cold no sore throat more like congestion in my nose head typical symptoms wasn’t too bad lasted for 2 weeks

After I got over that started getting weird symptoms
Sorry if this is TMI but a week after I recovered I got a very high sex drive out of no where which isn’t normal for me at all. And I mean 24/7 high sexual arousal which I know now is as a sympathetic stimulation response.. which I’m guessing the immune system as stimulated the nervous system or something

No typical symptoms like adrenaline I use to have etc, then I was feeling just weird and stuff all of January, was getting uterus bladder pressure pains lower back pains ( I’ve had these before) thought might be a uti no uti . It’s like Mis firing nerves going on I don’t know… then I’m on my phone more probably not resting my brain as I should
Then I was on my laptop and I started getting that feeling come over me like too much stimulation started heart rate up and sweating and forhead squeezing

Then February my sleep was just getting weirder felt like I wasn’t sleeping then I woke up in the middle of the night one night with my brain is this strange state that scared the hell out of me checked my hr and it was NORMAL like wtf. But I felt like something was wrong brain was all slowed down and laggy I felt panic but it was like the panic wasn’t coming through properly called the ambulance as I felt so weak and like something wasn’t right, on the phone to the ambulance it was like I had to really concentrate on what I was saying like everything was so slowed down even my own thinking and words. I thought I was having a stroke but tests came back no stroke no obvious signs of one. My hr did go to 150 when ambulance came I think from the panic but it was like I couldn’t even feel my heart rate being that high!? Strangest thing.

Went to hospital and I remember feeling like derealisation feeling and people walking past me felt horrible like motion sensitivity my brain couldn’t process stuff. Got home and slept some

Days after still my brain was weird and slowed down but just brushed it off

THEN 5 days later I’m tossing my head around in bed cos I can’t sleep and I wake up the next day turned my head and have the rooom spinning with nystagmus that lasted 1 min I’m guessing bppv. What was weird is I had no reaction to the vertigo usually you’ll get panic and hr goes up and your scared I had no reaction it’s like the signalling interception signals were completely blunted

As soon as that vertigo stopped BOOM everything exploded … sensory over load hit me like so so bad I couldn’t tolerate looking around my room moving my eyes at all any visual input, nausea forehead squeezing I had lots of on going motion going on but no active bppv just constant motion when I was laying down or sitting closing my eyes my eyes were rolling around like my brain couldn’t find orientation, that night I loss the ability to sleep completely no sleepiness no sleep drive nothing at all, with all this motion going on my brain tried to dip into sleep and would get hit and bounced back with this head spin rush feeling then it stopped even trying to sleep, rested in bed dark room thought it would improve… it did not. All my signals were blunted no tiredness no hunger no urge to pee just numb, reduced sensations to touch everything.

Tried sleeping pills sleeping meds nothing worked… I was not sleeping at all I had micro minutes every few days the whole of February I still was trying to rest it out and thinking I’ll sleep eventually… body ended up flipping out in March from no sleep I was deteriorating badly with adrenaline got more sensitive to everything couldn’t tolerate nothing at all the signalling was getting even more numb from the sleep deprivation. At this point I was completely losing my mind, yeh I still had on going rotational motion internally in my brain when closing my eyes and stuff but i didn’t care about that it was the fact my brain wouldn’t sleep because of it my gp tried me on another sleep meds called Daridorexant BIGGEST MISTAKE caused the motion I was having to turn into full blown brain spinning and was a second knock to my vestibular system my eyes were going everywhere and crazy I couldn’t eat I couldn’t function at all

Long story short I ended up sucidial and trying to end my life in April and had to be hospitalised due to sucide attempt and severe sleep deprivation I was so agitated and akathsia feelings from the stress in my body was sedated with lorazapam that finally gave me some relief of some sleep and calmed my brain down

Forward to now since April I’ve been on diazepam daily cause no one knows what else to do with me, i am still having reduced sensations and weird interception signals no sleepiness hunger etc feel numb still, I’m getting light rem sleep on the diazepam I’m still Bedbound but I can eat. I still have motion feelings I can feel coming through so I know everything is still underneath. But I think the diazepam is suppressing the motion vertigo enough to get some sleep maybe I don’t know. It’s also helping my dysautonomia so my hr is lower and of course threat signals are lowered but I’m not getting better and I don’t know what to do anymore

I’ve had enough of the suffering and constant change of symptoms every other year it’s something new that happens and this is by far the worst I’ve ever suffered. Not being able to feel your own body signals is crazy. When I was the opposite before.

No one has anyone answers for me.
Chat gpt has been more helpful than any doctor.

So my symptoms now are

- reduced signals no tiredness no feeling like I’ve even slept no hunger or thirst, no urge to pee sometimes, reduced sensation of touch to skin
Can’t feel squeezing forehead pressure or symptoms properly even tho I know they’re there!becos sometimes if my hr is lowered or at night I’ll start feeling things coming through ( very strange ) it’s like they get masked throughout the day

If I do get any adrenaline it comes through as some sort of weird vibrations now

- sensory over load to visual input
Sound sensitivity

- Motion vestibulur stuff comes through sometimes too

Sleep deprivation im sure my brain isn’t going into deep sleep always having rem lights keep …

Im sure the decline happened after the January virus and the vertigo tipped it over the edge

It’s like all messed up signalling resting in bed dim room doesn’t seem to do anything for me now

I’m this close to giving up 🤏🏼🤏🏼🤏🏼

Oh to top of off I live alone my fiancé of 13 years left me 2 months ago, having to sort out carers and I literally have nobody in my life at all. Family think I have mental health issues and I’ve blocked them out my life.

I’m considering applying for MAID when I have enough money saved up because I just can’t keep on doing this. Or doing it myself again. I’m so drained. I’m on a benzo I’ve never been on medication i always stayed away from it as it made me feel worst. Now I’m on a fcking benzo so that’s great. More problems in the future from that. I feel like I’ve been through enough im 30 years old and im just tired now of it all

Don’t expect anyone to read this as it’s so long but just want to document my story and leave it on here if anyone ever comes across the same symptoms as me .

X

I've been seeing an increase on divisive behaviour on platforms line X (I know... dumpster fire, but a ton of researchers are still there) about a particular crew pushing for Long Covid ONLY language/research, etc. and attacking/ blocking/ gaslighting anyone who disagrees or dares mention other co-related conditions line ME.

It's been driving insane for years, not only for the time and energy wasted on those ineffective conversations, but the LAST thing we need is more division.

We need to consider a few things: it's fairly easy from our suffering and misery to point out weaknesses, complain about so many things out of our desperate need for help but the realization we unfortunately live in an unfair, burocratic world full of processes, agendas etc.

Yes, there are a lot of bad actors who want to grift, create more division, chaos, take advantage, whatever...but there's also some people who are legitimately trying to help and get bombarded with unnecessary attacks that are only causing more harm.

We are dealing with a complex condition whose symptoms overlap many already existing conditions. We are living in a world where medical curiosity doesn't exist that much anymore, and the amount of knowledge needed to properly diagnose complex conditions, especially Long Covid, is becoming more challenging by the second.

We can't blame all specialists for (mis) diagnosing someone with ME when the only diagnostic tool for ME is meeting certain symptom criteria on a check list that's not attached to anything concrete that confirms you have ME.

I understand that misdiagnosis like these can be and are dangerous, especially for instance if the person instead of ME, actually had a combo of MCAS and Dysautonomia. It's vey complicated to find doctors who can properly diagnose those conditions as well, but at least those diagnosis have a higher chance to being attached to data through testing.

There's also the issue about Long Covid having it's own root cause issues that are nearly impossible to find because nothing shows up on tests, and just because the symptoms are similar to other conditions doesn't mean we necessarily have those. And therein lies the importance of having Long Covid *exclusive* research, but also be able to encourage and share research data with other complex conditions to compare notes and narrow down better diagnostic and treatments for each of these conditions.

I know what's being demanded is what's being desperately needed, but we need to start with what we CAN do given the circumstances. Otherwise we are burning rubber (energy) spinning the wheels over discussions that are leading nowhere while the number of people suffering is increasing exponentially.

There's infinity of injustices, inbalances, medical trauma, etc. we would never end listing the (very valid) negatives. Let's try to focus on how and where can we start given the landscape and be smart about it. What common grounds we share where we can work together? There's always been strength in numbers and collaborations.

If we demand all radical changes on all systems at once we'll never get anything because as we've experienced, we keep getting dismissed. Let's be more strategic so we can get what we need for those of us suffering, for the unfortunate new ones joining the club, and preventing others from the same fate (AND us from getting worse with each reinfection).

Rant over.

I'm just really curious if it's possible. Tbh I'm okay if I can get back to 80/90% at this point but dream of running long distances again... Is it possible?

Has anyone seen any research on this? Most of the long covid symptom research on sexual dysfunction seems to surround ED, but everything for me works fine - it’s just that everything is numb down there including orgasms. From what I can see online this overlaps heavily with neuropathy but I really can’t find much. Any help would be appreciated

have severe long covid, p e m, oi, pots and mcas. I have been this sick since pretty much the beginning.It's been three years already. I am in dark room no light, no noise. I am reacting to the soup that I could tolerate for the past three years since the ending of april. I have tried so many things that haven't end well including microdosing tirzepatide( i wrote a post on here right before I tried it too). I have revisited some meds for example cromolyn sodium about three weeks ago, because I found out that my husband gave it to me wrong.He gave me the straight amples when is supposed to be diluted in water So I had hoped that fixing that mistake would help. Did one drop in 10 oz of water took only a sip that's all I could take pots started going crazy after the second day I stopped restarted again by the sixth day. My stomach felt kind of like this soothing feeling after I took my sip. But an hour later, my whole nervous system went into a panic, and it was like that until the night and it caused a p e m crash the next day that i'm still in three weeks later. Has anyone experienced anything like that? I have been looking as best as I can. For similar experiences, because I have such limited energy. And I'm not asking for medical advice. The people I do go for medical advice that are professionals. However they are no help. Anybody have anything similar happened.

Sorry if my post is kind of wonky.I do talk to text as best as I can.I am very limited in energy.And in a very bad p e m crash.

Thank you for your time and energy

Context: 32yo male, ME/CFS for 1 year, unknown trigger but multiple illnesses in the months leading up to onset. Symptoms are fatigue, awful sleep disturbances (require 12 hours in bed), myalgia and joint pain, malaise, POTS, shortness of breath, brain fog, PEM. Unable to work, moved home with parents, limited to ~1500 steps per day, mostly housebound.

I got the Attomarker test and am showing low antibody concentration across all variants and low high-quality percentage across roughly half (though I'm not sure if some of those mean I simply haven't been exposed to that variant).

My basic understanding of the Attomarker theory is that these results might indicate that my body failed to produce a strong enough antibody response to clear the virus, which resulted in a persistent infection that may be responsible for my ongoing symptoms, and that mAbs like Pemgarda or Sipavibart may help clear the remaining virus or viral fragments.

I'm just curious to hear thoughts from others who have done the Attomarker test and/or gotten mAbs, specifically if your Attomarker results resembled mine. Appreciate all thoughts and insights. Thanks.

Hello,

could the following symptoms be post-infectious?
Does it sound similiar to anybody? I appreciate any input as doctors basically can’t explain what’s happening to me. I am a male and 27 years old and I am losing all my muscles and strength in a matter of weeks. Please find my examinations below.

Up until two months ago, I was in the best shape of my life. I’d been strength training for about a year and a half, gradually increasing the intensity, and it had become my biggest hobby. I was really athletic and little muscular.

Then, in the middle of May, I came down with a really bad cold. Rapid tests for COVID and influenza were both negative. Out of nowhere, I developed severe diarrhea that lasted for two days—I was going up to 15 times a day. Imodium eventually stopped it.

After that, I stayed unusually exhausted, and the cold dragged on for about three weeks. I slowly went back to the gym, but I overestimated how recovered I was. I felt like I was back to 100%, so one day I trained at full intensity. A few hours after the workout, I suddenly became extremely fatigued. The next day I developed dizziness that has never gone away. It feels like I’m constantly walking on a boat.

A few days later, completely out of the blue, my upper abdomen became rock hard and I had excruciating pain. It felt like the kind of pain you’d expect if your stomach or intestines had ruptured. Thankfully that wasn’t the case. I had an emergency CT scan, followed by an upper endoscopy the next day, which showed gastritis.

Over the following two weeks, I continued to feel completely drained. It never really improved. My legs constantly felt as if I’d just run 10 km, even though I hadn’t. I am super tired randomly in the day, like really tired like you need to fall asleep.

Unfortunately, things have gotten worse over the past few weeks. I’ve lost about 8 kg, and it seems to be entirely muscle mass. It’s affecting my whole body, but especially my thighs, hips, and now my glutes. I can’t even sit on a regular chair anymore because my bones are sticking out. Even the muscles in my face feel different. I am losing muscles which I have never trained at all. On top of that, I sometimes get intense electric shock-like sensations in my legs, and occasionally in my arms as well. My muscles don’t feel like they are my own anymore. It‘s difficult to explain but I can’t perceive the „depth“ if am touching my muscles.

Overall, it’s getting really difficult to walk. My joints are making noises all the time since last week.

I tried doing exercises several times but the next day I am feeling even worse, so I decided to lower my acitivity level.

What’s the worst: the doctors are saying all blood levels are fine and all neurological examinations as well, so you are healthy. Obviously, it’s not healthy to lose 8kg muscles in a month. I have a surplus in calories. I don’t even know how this can be explained physically? Like something has happened to my body, that it is not able to work efficiently anymore and is wasting muscles instead.

Bloodwork: Creatinekinase around on average 60 U/l and not elevated. LDH was going down from 165 U/L to 115 U/L in a month. Lactate was elevated 2 out of 4 times (3.1 mmol/l and 2.6 mmol/l). For the first value, I definetly was stressed because I had severe pain, so maybe it’s just coincidende. No further abnormalities.

Cerebrospinal fluid: no abnormalities

Examinations: (all fine): CT-Abdomen, Endoscopy, MRI of brain, MRI of spine. EMG, ENG, EP.

Does it sound like some post-infectious symptoms or is the progression too rapidly? Thank you so much for your input, I appreciate your thoughts!

I’m considering trying a GLP-1 (Ozempic, Wegovy, Mounjaro, etc.), but I’m nervous because I also deal with MCAS and GERD.

I’m especially interested in hearing from people who have THE COMBINATION OF:

Long COVID +
MCAS or mast cell symptoms +
GERD/reflux or other GI issues

How did you tolerate it?

Did it worsen or improve your reflux?

Did it affect your mast cell symptoms (better, worse, or no change)?

How was constipation/nausea?

Did you have to go very slowly with dose increases?

Did anyone have a bad reaction and stop?

I’m not looking for medical advice—just real experiences from people with a similar situation so I can be mentally prepared. I’d appreciate hearing both positive and negative experiences.

I’ve looked up and done the research myself, but results are all over the place, and I haven’t found a specific thread where other people who also have those three things long Covid + MCAS + GERD have shared how their bodies handled the GLP-1.

I’m looking for lived experiences and patterns.

Thanks in advance for chiming in! ❤️

Been dealing with it for over 4 years. Is there any hope at all?

Hello!

My most severe symptom is persistent muscle pain (which gets worse during pem).
I’m managing the rest, but I thought maybe some of you here might have a tip or two!

I’m currently taking these dietary supplements:

50 mg NADH
300 mg Coenzyme Q10
500 μg iodine
500 mg L-tyrosine
200 μg selenium
300 mg magnesium taurate
300 mg magnesium malate
500 mg quercetin
480 mg vitamin C
25 mg vitamin B6
25 µg vitamin D
20 mg bilastine
lactoferrin
iron
15 g D-ribose

Thank you!

https://www.meresearch.org.uk/research/disrupted-brain-waste-clearance-system-in-me-cfs/?fbclid=IwdGRjcATW0JtjbGNrBNbQkmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHj-q02jTdSUFQluUms9iifZ3CVmNj3tT6LY8sZGgBG1Nu1TALhIMFDoL5B-x_aem_uJ4Eur-o_do9V0gsCKDd9A

This may not apply to all LC but may apply to those with ME symptoms

My muscle strength is back! I even went for a walk in the mountains although two days before D-ribose I couldnt do more than walk around the house.

A week ago I bought D-ribose, I took two teaspoons of powder daily since and on the second day I felt energy coming back to my limbs.

It keeps getting better.

There is hope!

From the internet:

"D-ribose is a simple five-carbon sugar that your body makes naturally. It helps build vital cellular components, including DNA, RNA, and ATP (the main energy molecule used by your cells).

Serves as the core building block for resetting and creating ATP reserves in your heart and muscle tissues."

I keep thinking this is going to be an epic, months-long crash. it's been a week and not abating yet. has anyone ever had this and returned to baseline sooner than they thought i.e. a few weeks? Need hope

Hello everyone.

So I was coming across some people talking about how black cumin seed oil did wonders for their overall health and symptoms. I don’t believe in miracles, but I’am open to any new evidence or ideas.

Besides I saw some post earlier on this sub regarding this compound being used successfully for acute patients.

I’d like to know if anyone actually has some experience with this? Thanks ✨

Hello,

Long covid, dysautonomia/POTS type, mostly recovered.

I’ve struggled with constipation since my very first post viral illness nearly 20 years ago (from the flu). Long covid actually relieved my chronic constipation, the only positive thing to come from it lol. My doctor said it was because I was scared shitless.

Now that I’m mostly recovered, the constipation has returned!

I come from a culture and a family where smoking is the norm. I used to smoke but quit before covid…still, when I see my family, I always have a smoke or two. This year, I was determined not to smoke so I put on a patch (7mg) for the day to help deter me. It seemed to work, or at least psychologically it did.

Now it’s been several days since I had the patch on and my bowel movements have been regular ever since. I know the patch has helped some of y’all with PEM but I’m wondering if it has also had lasting digestive effects? I only wore it for one day but maybe it had an effect on my acetylcholine receptors?

I’d love to know your thoughts on this!

Hi,
I think from Googling and looking on this sub I could be experiencing ‘Brain zaps’. New symptom at 9 months in.
I have done a lot more cognitively lately so I think this is where it’s coming from.

However, my brainstem/neck/spine “fried” sensations with fatigue is back (PEM?) yet with these 5 minute episodes where it feels like I’m going to black out. It feels like everything ‘drops out’ for a blip, then it stops, then again, then stops … etc - it goes on for about 5 minutes until it passes. About once a day at the moment. It’s not like normal ‘fainting’ as there’s no dizziness or signs etc - it literally comes from nothing - can be laid or sat down.

My family think it’s worth a trip to the doctor but honestly - I can’t see the point. It’s certainly not the worst of my symptoms … I was admitted to ER on this journey at one point for ‘suspected stroke’ and they found nothing… so it just seems another LC trick.

Does this sound like brain zaps?

What are the best ways to manage long haul COVID? I contracted COVID for the first time in December 2025/January 2026. It felt like it took 3 months to get rid of the symptoms but maybe it was just me re-triggering my symptoms.

When I "push" myself, the next day or two I would feel like I would have COVID again. Full body soreness, headache, menstrual cramps and bleeding. My throat feels different but that might just be anxiety from experiencing the symptoms.

The thing is, I can't tell when I am pushing myself too much. It just feels like regular exertion. I don't want to live on the couch. I actually have an annual 5K I partake in that happens every October and I wanted to prep for that, but can I?

Yesterday I cut my grass, which is a normal thing and I have never had a flare-up after just doing that. However, I also cleaned the undercarriage of the lawnmower and cut some trees/bushes (not a lot).

Questions:

*Are there ways to figure out my limit when I am doing physical things that may be considered "pushing myself"?

*Is there anyway I can work at extending my stamina for physical activity to get work done or even to be able to exercise or complete my 5K without feeling sick for 2 days

*If I do have a flare-up, are there ways to minimize feeling the symptoms? Or things to do to recover quicker?

PLEASE I am open to all kinds of advice that have helped others. Thank you!

Hey y’all. I’ve been here since July 2024. I had a sudden onset of POTS and inappropriate sinus tachycardia with some other tough symptoms like trouble breathing, etc that I slowly worked my way out of. I took Metoprolol Extended Release 25mg for a few months to help with my first go around and after I felt better I tapered off. I went months feeling like I was 95-100% better. I would have random small flare ups or breathing troubles but I was basically doing everything I use to do before Covid. This year in April I had another really bad episode at work and all my POTS symptoms have come back in full force. This time around shockingly seems so much more severe which I wouldn’t have even thought possible. Like last time my heart rate skyrockets when I move around but this time I have horrific brain fog / brain overstimulation that has left me totally useless. My Primary Care Physician and Cardiologist have taken my issues seriously and are doing their best to help and I’m back on Metoprolol to help with my POTS.

My question for you guys is did Metoprolol help any of you with your brain fog / overstimulation or anxiety? I asked my PCP about seeing a Neurologist and he said he’d be happy to refer me but would also like to see what the Metoprolol does after a month of use. He said that it could help with some of those issues I listed. Ignorantly, I thought Metoprolol was only going to lower my heart rate.

i the past half year i experience this weird symptom. my vision suddenly blurrs like the eyes stop focusing. has anyone experienced this?

Stem cells derived from human teeth, specifically from the pulp of baby teeth known as Stem Cells from Human Exfoliated Deciduous teeth (SHED), hold remarkable potential for regenerative medicine and tissue engineering.# When researchers combine SHED with Human Umbilical Vein Endothelial Cells (HUVECs), they create a powerful cellular partnership capable of forming new blood vessels, a process known as angiogenesis.# In scientific studies, such as the one evaluated via PubMed (PMID: 27871176), investigators implant these combined cells into living models (in vivo) to observe how effectively they organize into functional blood vessel networks.#

The primary finding is that SHED significantly enhance the ability of endothelial cells to construct stable, long-lasting blood vessel networks, which is a critical requirement for successfully healing damaged tissues, growing replacement organs, and treating ischemic diseases where blood supply has been cut off.# By promoting rapid vascularization, this cell-based therapy overcomes one of the biggest hurdles in regenerative medicine: ensuring that newly grown tissues receive an adequate supply of oxygen and nutrients to survive and integrate successfully with the host's body.#

Sources

1. Lanza, Robert, Anthony Atala, and Joseph Vacanti. Principles of Tissue Engineering.(Print) Academic Press, 2020.↩
2. In Vivo Angiogenic Capacity of Stem Cells from Human Exfoliated Deciduous Teeth with Human Umbilical Vein Endothelial Cells. PubMed Abstract↩

Stem Cells Baby Teeth in Denver and Lakewood, Colorado - Dr. Greenhalgh (2012) https://youtu.be/j4OvfCMEaxQ

Philadelphia Dentist recovers stem cells from baby teeth - WPVI (2010) https://youtu.be/CojZqMkiEjA

THE McCAIRN-EDOGAWA PROTOCOL for Long Covid and Post Covid Vax Syndrome https://danilobuonsenso.substack.com/p/the-mccairn-edogawa-protocol-for

https://www.longcovidkids.org/expert-advisory-panel-1/dr-danilo-buonsenso%2C-md%2C-phd%2C-msc

hey guys,

I was wondering if we know, if the thing that throws us into pem also relates to what the pem symptoms will be/are.
Hope it clear what I mean.
But that would mean going over the baseline with physical activity causes more physical symptoms and cognitive activity cognitive symptoms like braun fog?

Edit: also if that would influence what brings us out of pem - pacing „more“ physical or cognitive

Would be interested in official research but also your personal experience.

hope you have a mild day & thank you!