r/covidlonghaulers

I caught covid in August 2024. Initially, it was just bloating and recurring diarrhea, symptoms I still have today, despite having undergone every test imaginable. However, in recent weeks, I’ve noticed increased food sensitivities, difficulty digesting food, and a sense of brain fog.

I’ve found that H1 antihistamines really help alleviate the symptoms, and I have an appointment scheduled with an MCAS specialist in a few months.

I wanted to know if anyone else has experienced this kind of disease progression.

Background
I’m a 32-year-old Indian entrepreneur in Texas. I own and operate a real estate company with about 40 employees which I started while I was 20 years old and was thriving until I got hit with COVID.

Before COVID, I was in excellent health and extremely high-functioning mentally and physically. I had great memory, strong communication skills, plenty of energy, high motivation, sex drive and felt like I could work endlessly.

I caught COVID in June 2020 at age 26, well before any vaccines were available. I also never got vaccinated when they did come out later.

I don’t carry health insurance (that will change come November), so everything so far has been paid for out of pocket. I’ve spent a significant amount trying to figure this out, with some findings but no real solution yet.
At this point I’ve largely been managing my own medical journey because several doctors essentially told me my tests were normal, nothing major was wrong, or I was simply getting older.

My COVID Experience
During the infection, I completely lost my energy and motivation. I didn’t want to work, answer calls, socialize, or interact with anyone.
My highest fever was around 103.4°F, and the fever resolved within roughly three days.
Aside from fever & fatigue the only strong symptom I recall is developing a strange smell distortion where almost everything smelled like a burnt cigar — food, candles, marijuana, etc. (I did take a few puffs from a buddy’s cigar a week prior which I believe is the night I caught the virus)

By around day 5 I no longer felt severely sick, but the exhaustion and cigar smell remained.

About three weeks later I tried a NeilMed sinus rinse to curb the awful cigar smell which lingered on with little to no improvement since the onset. The burnt-cigar smell curbed by roughly 80% almost immediately, with the remaining 20% subsiding over the following week.

The fatigue and cognitive problems never went away.

Symptoms I Struggle With Today
-Inability to think critically (feel like my IQ dropped by 50 points)

-Brain Fog

-Terrible memory and recollection (short term & long term)

-Decline in diction/verbal fluency and ability to speak as professionally as before

-Chronic fatigue regardless of how much I sleep. Ex. I lie on the couch to watch TV or read emails on my phone, I fall asleep and literally drop the phone on my face

-More days with virtually no drive or energy than not

-Very low motivation

-Anhedonia-type symptoms

-Low Cortisol more often than not

-Low libido despite still being able to get erections

The biggest change is that I simply do not feel like the same person cognitively or motivationally that I was before COVID.

Testing / Treatments So Far
Function Health — Blood Testing App
I use Function Health for extensive blood work and tracking trends over time. I personally recommend it for anyone who wants a large amount of lab data organized in one place.

Amen Clinics SPECT Brain Scan — 2022
Nothing useful came from it. Report was that everything generally looked appropriate.

Endocrinology / Low Testosterone — 2022
Testing showed:
Total Testosterone: 223 ng/dL
Free Testosterone: 6.29 ng/dL
SHBG: 12.8 nmol/L
I never had hormone testing before COVID, so I have no idea what my normal testosterone levels were when I felt healthy.
I was placed on TRT and stayed on it for about three years.
TRT probably improved how I felt by around 20%, and at the time every bit helped.
However, I never experienced the dramatic improvements in energy, drive, motivation, cognition, libido, etc. that many men describe on TRT.
I also lost roughly 60% of my hair during those years.
I stopped TRT in December 2025.
Interestingly, I did not experience major negative effects immediately after stopping. Around five months later, my testosterone had essentially returned to my pre-TRT levels.

Gastroenterology — 2025
I had comprehensive stool testing for bacterial and gastrointestinal abnormalities. Nothing significant was found.

Pituitary MRI — 2026
A newer endocrinologist ordered a pituitary MRI. Nothing was found that explained the severity of my symptoms.

What I’m Doing Next
—ACTH stimulation test scheduled Monday to further evaluate adrenal function.

—Scheduling my first neurology appointment @ Baylor College of Medicine. As I’m increasingly wondering whether the primary problem is neurological rather than purely hormonal/endocrine.

What have you done that you feel others have not & have you found an underlying cause?

Has anything meaningfully bring your cognitive ability, energy, motivation, or personality back toward your pre-COVID baseline?

I am willing to spend as much money as I need to improve my situation. For me, on the business end, it’s more expensive for me to do nothing. Curing myself would allow me to make the investment back 10 fold, not to mention the priceless quality of life I would which all of us are after.

My (31F) boyfriend (40M) has been suffering from LC for 4 years now. It has destroyed his quality of life, he cannot work, and he is now in financial ruin. Losing his place to live because he can’t afford rent, he doesn’t keep up with friends since he got sick, and essentially only finds happiness when being with his 5 year old daughter.

He told me last night that he doesn’t want to live anymore and I am in shambles. I want him to keep trying, I don’t want him to end his life. But he keeps telling me that it isn’t fair to ask him to keep suffering anymore when there’s next to no chance he will ever get better.

From folks in this community who have LC-ME/CFS… can you tell me what you would do? Or what you’d want your partner to do? Am i cruel for asking him to keep going, like he says?

I love him so much, I don’t want to lose him. Moving in with me isn’t an option because I have two roommates (and I’m not in a financial position to move out with him and cover all bills), and he has his daughter over when is he able to look after her. I am at a loss 😭 My heart is breaking. 💔

I (33F) have had long Covid for four years. Its largely been severe, but over the last few months my energy envelope has been expanding. I've still been pacing, but this week I got overexcited and overdid it. I went on a two hour shopping spree in a noisy shopping centre then went to watch Othello the next day.

I've been stuck in bed ever since. Profound weakness. My brain feels sluggish again. I eat a meal then fall asleep. When I'm awake I'm horizontal and staring into space. No books, no TV, no music. I haven't been this severe for a long time. I hoped it'd last only a day but it's been a few days now

Tomorrow I'm meant to have a date with a guy who I've liked for a really long time and I was really looking forward to it. I'm gutted that I'll have to postpone until I'm out of this flare, whenever that may be.

I've been doing a lot of voluntary work as well for different ME and long covid charities. I've got a lot on my to do list, which I was getting done before this crash, but I've not been able to do anything for days and I feel so guilty. I'm sure they'll be understanding because of the nature of the charities but I still feel bad

Next week I'm meant to be attending a friend's graduation and another friend's birthday meal.

I'm so angry at myself for getting so overexcited and overdoing it. I really hope I return to baseline sooner rather than later, so I can pick up where I left off with the date and charity work, and I've not ruined anything for myself.

Plus I'm scared I may have permanently worsened my baseline.

Hi, all — I’ve been dealing with my cluster of symptoms since the last week of September 2024 (just hit my two year anniversary 😂). My primary symptoms were near-constant light headedness, feelings of pre-syncope (never fainted, but frequently feeling like I’m about to), nausea, heart palpitations, restlessness, and, when in the throes of a flair, brain fog. When this began, I was a healthy 30 y/o man, about to run the NYC Marathon.

I saw every specialist there was to see and had full work ups from all of them — all always clear. I would bring up with each that this began about 6 weeks after having my fourth COVID infection, but most would just note that and not mention it or its connection again. (It’s worth adding that I was diagnosed with PPPD in November 2025, but I’ve never felt good about that diagnosis and I really don’t think the doctors did either.)

After recently moving to NYC, I learned about NYU’s long COVID clinic as a part of their pulmonologist practice (your symptoms do not have to be pulmonary). I made an appointment for an assessment — they were able to get me in about a month after I called.

After a thorough hour-long assessment with an NP, she told me that she was almost certain I had dysautonomia caused by COVID, and she was pretty sure it was POTS. Sure enough, after doing a NASA lean test, I’m perfectly in line with a POTS diagnosis (I still have a tilt table coming up to confirm). She immediately had be start a POTS protocol and let me know that I likely won’t see results for about 3 months:
-3,000 mg sodium/day
-3 L water/day
-30-40 compression stockings
-CoQ10
-Alpha Lipoic Acid

This is all to say: DON’T STOP TRACKING DOWN ANSWERS! After 2 years of endless appointments, scans, and tests, all it took was the right person hearing my story at the right moment. Also, I highly recommend NYU’s clinic — and I’ve heard great things about Mt. Sinai’s, as well.

Feel free to ask if you have any questions!

Simple observation: After reading about dopamine transmitters damaged/not working with LC
Should the focus be on dopamine releasing drugs?

Psilocybin did wonders for me ( at least for quite some days )
Weed too but I find it not sustainable in the long term.

What else is there?

I've been microdosing Zepbound for about three months now and had a consistent pattern of 3-4 days of fatigue following shot day, which is both unpleasant and counterproductive. I'm lucky to have a pharmacist colleague who will answer every wacky question I send her, and she suggested two things:

1. Shift my shot to morning instead of evening, so the fatigue hits in the middle of the night (thank you pharmacodynamics!)

2. Start supplementing with B12

This has cut my post-shot fatigue by about 80%.

I really don't think I can hold on much longer.

I was reading an unrelated article about a boy who was developing normally in the ‘Medical Mysteries‘ section of the Wa Po titled - “A toddler’s wobbly walk, hand tremors send parents on a medical journey“ and long story short it identified a genetic issue induced by bad flu he had 15ish years ago as a toddler. It affected his mitochondria.

“At first, Wangler said, he was skeptical. Like other clinicians, he’d seen several patients with DNM1L mutations, but he said their physical symptoms — such as early-onset epilepsy — were different, and more severe, than Oliver’s.“What changed my mind was finding other families who have similar symptoms with the same identical gene variant,” Wangler said.The DNM1L gene provides instructions for making a crucial protein that helps mitochondria, the tiny powerhouses that supply energy to cells, divide and maintain their shape, Wangler said. DNM1L performs a similar role in peroxisomes, small cellular structures that help process specific fats and protect cells from oxidative damage, he added.”

So I searched for if DNM1L had been related to long covid and found this recent article and thought I’d pass it along immediately. Has anyone researched this?

Gave up everything in my life 4 years ago because Long Covid ruined my life, which I'm sure you're all very familiar with. Now, for the last few months, I've been drained beyond what is "normal" for me. Like, normally I can paint a little once every week, or play with my cat every few days, or cook something once in a while. Now I can do literally none of those things without feeling disproportionately awful after. The price I pay for making a simple dish is the same I used to pay for a 2 hour conversation (weeks of recovery). And now in the last few days my light sensitivity has increased dramatically?? I'm really sensitive to sound now, which is weird enough and I could never understand how that is a symptom, but now light too?? I'm honestly venting so that I don't let myself feel the fear of what this all might mean. My health going downhill even more to the point where I am laying in a dark and quiet room is a nightmare that hits a little too close to home. Idk, I'm just done with this shit.

My nervoussystem feels way worse for two weeks now slowly getting worse with no clear trigger. It is my first time experiencing a october slide. But i dont understand why. My day to day has not changed at all and temperatures did not drop that much either.

Last year I had the same issue but it was my first covid year so i was just pacing worse. But this year it really seems to just be from the change of seasons.

Is there anything to make this period easier?

Has anyone with Long COVID or ME/CFS had GPCR autoantibodies tested? What happened after you got the results?

Did your doctor use them to decide what to do next, or were you left with a result that nobody really knew how to interpret?

If you remember which test or laboratory you used, that would help too.

I’m in highschool, have had symptoms for years. And just feel like my nervous system is dyregulated and fried. How much rest should I be getting. I was scrolling and saw someone said they were sleeping TWENTY THREE of twenty fours hours of the day. There no way. I get tired easy, have all the traditional symptoms. Im attending school but flare up daily during gym class. I’m looking for help. Read my other posts for more info.

It is nice outside, the trees are turning colors, foods and flavors are changing, not to mention Halloween is coming.

Beware the October slide. Don't over do it. We don't want to repeat what happened last year now do we, where we barely got out of bed for a month. You just barely recovered in time to attend Thanksgiving.

Reason for this message: I tried to move some garden border bricks. That was enough for me to go into a light PEM. So no more playing around.

Anyone sees improvement on this medicine? Can you please share experience?

Anyone’s genetic study fire serum amyloid variant? Mine just did… my LC clinic was wondering if I have micro clots well after this finding I guess it’s time to start down this path.. it’s wild!?!

Hi, I know leaving the house isn’t a luxary all of us gave, but for those who can, I have really bad agrophobia because of how random and severe my symptoms can present, but I really am tired of being inside and I also really need to try and get out more so I can make it to appointments I need, since not all are zoom.

I tried going to the movies yesterday and I took a lap around the mall before hand, but I started getting overheated and sweaty. I thought eating lunch would help so I ate at the food court but I just felt so sweaty then I got kinda nauseous. I pushed through and got in the actual theatre, but I was still nauseous and a bit dizzy and I didn’t pull through, so I panicked and called my mom.

Of course though once my mom came, I felt better and probably could have stayed for the movie. So I’m sure this was an anxiety response.

I’m willing to do anything to try and get passed this and just want to ask how you guys get passed this, my main fear is passing out or puking in front of people in public or my symptoms presenting in a dramatic way.

Anybody get episodes where you feel lightheaded and like you’re going to pass out if you keep talking. So you have to take shallow breaths and breathe slowly until the feeling passes?