I have all kinds of weird symptoms. I have light sensitivity, sound sensitivity, but more recently if I sit up, my heart rate will go to about 105 and not always but a lot of the time I’ll have this sort of pulling feeling in my stomach sometimes once sometimes multiple times after standing up or changing positions

The sun seems to cause this like energy drain where I feel mental and physical fatigue, and I’ll lie down and I’ll feel my blood pumping really fast to my head. It seems and then after that I feel fairly restored depending on the day this will happen multiple times does this sound like some sort of vascular issue or more dysautonomia?

I included a normal day in visible. When I went to the bathroom it spines. Sometimes just moving on certain days in my bed causes my to get this feeling. And it feels like it’s harder to breath sometimes, almost feels like something shifting in my diaphragm, causing it to be more hollow or something

I'm currently writing a book on my experience with Long Covid to keep myself from going insane. In chapter 5 I explain what a day is like and why it is so hard for me to deal with it on a day to day basis. I thought it might be good to share it.

The name of the chapter: Another rerun of life, slightly rebranded by a catastrophe.

You can read it here: https://jmp.sh/s/QyBE7SG4DYJOAl2UUaDP

(available for 24 hours, pm me if you want to read it after that - tool doesn't allow for l)

Does anyone else deal with bouts of neuroinflammation? Like it going and coming? At around the middle of Feb I started getting this awful derealization and anxiety and constantly feel like Im not real. Slowly, especially these past 2 weeks, a bunch of my symptoms like right sided weakness, headaches, vertigo, brain fog, phantom smells, trouble sleeping and visual snow seemed to have worsened or become more noticeable. In mid December of last year to the end of Jan I had a similar experience which stressed me out badly. Anyone got any advice on how to deal with this/cope?

Follow up to this post:

https://www.reddit.com/r/covidlonghaulers/s/BxKZ9KaCrJ

I finally got to see my family doctor last week (out of the country for a month).

He found a swollen submental lymph node on my left side under chin, it is below the lump if you look at the lump in OP pics and trace it south.
I’ve never had a doc find swollen lymph nodes in my life that I’m aware of.

Prior to this the lump was noticed by me on March 13th.

By this point I had ongoing bleeding gums for 3 months.

The dentist thought I just had plaque build up though my hygiene is great, he actually missed the lump on the physical exam (pissed because I had to pay for that).

I lost a lot of weight and have a serious lack of appetite, I sometimes get night sweats, today I felt awful tired after trying to sweep my deck, so tired I went to bed as early as possible like 9pm and passed out hard, both are unusual for me.

If anyone else is dealing with or has dealt with swollen lymph nodes and painful lumps, I would like to hear your experience please.

For those of us who are holding down jobs - I find it really frustrating when I have a "good day" because I so desperately want to take the day off work and do things that actually like, feed my soul.

But I take so many sick days on bad days. I really can't afford another sick day, but it sucks spending my best hours in work :(

Hi, I tried paxlovid generic for 8 days with no noticable improvement, I am thinking whether to try favipiravir next which is available in india , don't know about other countries .has anyone noticed any improvements with it or anyone who has improved?

Been on lumbrokinase few days now, am I getting a herx reaction? My headaches are almost the craziest they’ve ever been.

Hey everyone,

I'm 28F , I'm pretty sure I've developed alopecia areata due to LC. My hair has been falling a lot for 8 months and the sides of my hair is looking thinner. My eye lashes also started to fall off. I used to have long thick lashes and hair. This is so devastating and I'm scared to go bald. I assume this is alopecia due to my hair won't stop falling and I've read about people having Telogen effluvium due to LC but theirs stop falling in 6 months and start to grow. I have a feeling mine won't stop for a while or not sure if it will at all. I also have other LC symptoms but this one will ruin me more because I'm already insecure about my illness and I already hate looking at myself in the mirror and this hair loss is making it worse.

Did any one develop it due to LC ? And did it resolve or does anyone know how to stop the hair fall ?

P.S. I don't have a history of baldness in my family. We all have thick hair with no hair loss.

I have heard a few good recovery stories using exosomes. Anyone use them?

Excellent article!

https://www.canadianaffairs.news/2025/04/06/is-covid-quietly-sabotaging-our-immune-systems/

Has anyone seen or heard of this? Did an mri and my report says 'low T1 signal in the parietal lobes and in the peritrigonal white matter' and wondering if this is because of COVID

With the whole world not caring about us, no one taking precautions, mask bans in the works, resurgence of measles… I’m just about done with trying to live in society.

I recently watched a YouTube video about a group of young hippies that live in these old renovated school buses in the middle of the woods in Northern California. They’re completely isolated from the rest of society and they just peacefully live in this group together. This would’ve sounded like a crazy thing to me years ago but the more and more our situation worsens, the more intriguing it sounds to me.

Imagine if a group of us long haulers, already abandoned by our families and friends, lived together somewhere far from society and just lived happily. No worrying about masking, no stress from covid deniers.

I’m 6”2 and I weighed myself today and im down to 155lbs and I was just over 160 last month and I feel a bit sad and discouraged. I eat about 3 times a day and I have to work full time and recently got Covid again last month which I think is re activating appetite loss and fatigue for me just been super tired all weekend. Has anyone seen any appetite recovery with supplements or medication? I’m considering megestrol acetate it’s helped me at one point but I think it was mostly water weight I looked bloated but I felt healthy till I got sick again. protein powders don’t seem to work neither I just wanna get back to a healthy 180lb. Has anything worked for you guys who’ve recovered? Thanks

I went into a flair. I have not quite gotten to a point I would declare that I have victory over LC, but I was trending in a positive direction.

Something changed on Friday/Saturday. Nit sure it’s the stress from the stock market at a time finances are already concerning. Or could it be that I may have inadvertently exposed myself to some virus (hope it’s not Covid) on Friday morning by, gosh forgive, I have breakfast out once. Then for the first time in a year I played a video game with my son for fun. I really had trouble with screen time during the worse if LC and could not do games.

So Sat night, runny nose, headache. Had trouble sleeping, headache. Been off all day today. Headache, dizzy, tired, ears ringing.

So wondering what people think. Could a game cause PEM? Is a crash still to be expected at this point in recovery. Feeling really down.

Wondering if there are any girls out there looking to chat for a long term relationship who are committed to never getting Covid again? I have had long covid 2 times now and am getting ready to change my life by selling my paid for house and moving into the country to live an outdoors lifestyle/full hermit. I’m 39 years old and have a good work from home job and am an average guy. My family and society doesn’t take any covid precautions and I don’t want to be sick for 2 years every time I get covid.

For those who use H1 & H2 Histamine blockers. How long did it take when using them for you to feel the effects?

Also when taking them, is there a specific way to take them to enhance the effects, like specific timing gaps or something else along those lines?

Started taking Zyrtec & Pepcid this week. Havent felt much from it.

And I'm still stuck in this post-viral hell.

This is my story. It is a long read, not for everyone, but I hope someone might read it and offer some help.

At this point, I feel like I've exhausted every possible avenue and I'm done using ChatGPT as a sounding board.

The initial infection

Just over 2 years ago I came down with a nasty virus that had all the hallmarks of covid (despite testing negative) - loss of sense of taste, loss of sense of smell, high temperature, muscle aches and the most fatigue I have ever felt, completely bedridden for over two weeks.

For the first 7 months, I wouldn't say I had the kind of long Covid I have now (more on that later), but I certainly noticed some things were odd. I would crash after carb-heavy meals or deserts and would need to sleep for an hour or two in the middle of the day. For approximately the first 4 months, I needed a mid-afternoon nap because I could not keep my eyes open. I was so tired, especially after lunch. At this point, this fatigue and insulin-like resistance was my only real symptom.

Some 8 months after my initial infection, after being incredibly careful about not engaging in physical exercise after reading all the horror stories on here, I decided to slowly build up my fitness and hire a personal trainer. In my second week of training, I woke up one day before my session feeling quite groggy and tired. I felt like cancelling the session, but figured I was just being a coward. Boy was I wrong. About 5 minutes into my warmup on the treadmill, I felt like I was going to die. I checked my heart rate - 190 bpm. My personal trainer told me to stop and we ended the session for the day. I have not ran since.

The real hell begins

For the next week, I was bedridden with what I can only describe as ME/CFS symptoms, or perhaps PEM. I could not do anything. After eventually finding some energy to get up on the 3rd or 4th day, I immediately felt dizzy and this dreaded feeling of palpitations and anxiety began. I checked my heart rate and it was 140 bpm. I had POTS. Somewhere around that same time, I also developed yellow and foul smelling stools, which remain to this day, undigested food in stools and bloating after meals. Thankfully, the CFS/ME symptoms dissipated over a couple of weeks, but they do come back in full force if I let my heart rate get too high for too long. I also seem to have developed a short fuse, I get emotional and angry easily, but it's hard to say whether this is because I feel so stressed and upset at the situation my body is in or because it's a direct symptom of whatever the hell this is.

Since this dramatic worsening in September of 2023, I have tried every supplement under the sun, achieving a couple of short-term remissions:

a) January 2024 I had a 3-week remission after taking 1,200mg of NAC/day. This effect eventually wore off.
b) November 2024 I had another short period of remission after supplementing with SAM-e, Dihydromyricetin, Boron, Vitamin B2 and Tongkat Ali. I stopped after developing stomach pains.
c) 70% remission on low-histamine, low sulfur, low fat diet after 5 days (combined with anti-histamines and fat-soluble vitamins A and E). I relapsed pretty quickly, because all I was eating on this diet was rice.

I've also achieved some mild improvements in my POTS with certain antihistamines, including Xyzal and Bilastine but the effects are small and not permanent, and my stools have not improved either.

Bloodwork & other tests

Unremarkable. The only abnormal biomarker was low IgM, which I was told was clinically insignificant, although I'm not convinced. H pylori, stool tests for parasites and active viruses (HIV, CMV and EBV) all came back negative. SIBO breath tests for both hydrogen and methane also came back negative. It's not possible to test for H2S SIBO where I am but I don't think I have it. B vitamins and trace minerals all came back normal. Iron normal. Testosterone is within normal range albeit on the low end of normal for a man of my age (early 30s).

My personal working theory is that somehow there is a metabolic/liver element to my type of long Covid given that both NAC and SAM-e seem to have improved my condition, albeit temporarily. I also believe there is a histamine component, and I also think I may have functional fat-soluble vitamin deficiencies given my yellow stools.

I had pre-existing grade I fatty liver at the time of the initial infection, which remains to this day. On this basis, I have tried to supplement liver supporting herbs such as milk thistle, artichoke, dandelion and TUDCA, but these have not brought me any improvements in my POTS, and they've dramatically worsened my stools every time and also given me BAM symptoms.

I have also had my microbiome tested with biomesight, where I discovered high elevations of novispirillum (proteobacteria), which I have since brought back to normal levels using interventions such as lactulose and high dose vitamin C. My bifido although improved is still low, while my akkermansia and lactobacillus are non-existent. My bacteroides are now slightly elevated, but they were normal when I first had POTS anyway.

In the last 6 months, I would say I've also developed some gastritis-like symptoms. It's unclear if this has been brought on by stress, or by using my body as a guinea pig trialing all sorts of supplements, drugs and snake oil, daily-coffee on empty stomach (which I've done for years), or is simply another delayed long-covid symptom.

Here's a non-exhaustive list of supplements and drugs I've tried from the top of my head - when I last counted the ones in my cabinet it was over 107:

- Quercetin
- Pine bark extract
- Alpha Lipoic Acid
- NAC
- Cranberry Extract
- DIH
- Nattokinase (made me worse)
- Indol 3 Carbinol
- Vitamins B12/B9/B2/b5/b7 - methylated forms as well
- Fat soluble vitamins A, K, D and E
- Benfotiamine
- Lactulose
- Lactoferrin
- Vitamin C
- Chromium
- Pomegranate Extract
- Monolaurin
- MCT oil
- DAO
- Melatonin
- Ox bile
- TUDCA
- Bifido GI Balance
- Lactobacillus Rhamnossus GG
- Streptoccocus Salivarius K12 (made me worse)
- Streptoccocus Salivarius M18 (made me worse)
- Vivomix probiotics
- Lactobacillus Rueuteri
- Activated Charcoal
- Chlorella
- Artichoke
- Dandellion Root
- Mastic gum
- Bromelain
- Butyric acid
- Caprylic acid
- TMG
- Magnesium
- Zinc
- Selenium
- Boron
- Potassium
- SAM-e
- Acacia Fibre
- Arabinogalactan
- PHGG
- Pectin
- Psyllium Husk
- BCAA
- Acetyl Carnitine
- Phosphatidylcholine
- Omega 3
- Alpha ketoglutorase
- Iron
- Taurine
- Colostrum
- Lysine
- Arginine
- Imunoglukan
- Astragalus
- D, L-Phenylaline
- 5 HTP
- Passion flower
- Korean Ginseng
- Ginko Biloba
- Candibactin-BR
- Pepzin GI
- Black seed oil
- Allicin
- Cabbage juice
- High dose garlic
- Homemade yogurt with L reuteri
- Milk Thistle
- Bilastine
- Xyzal
- Benadryl
- Aerius

I'm not expecting anything to come of this post. It's part rant, part hope. I just don't know what to do anymore. I've ordered some bovine-serum derived IGG as a last hail Mary supplement given that my IgM is low, but given that the above list has failed I don't have any expectations.

I'm hoping maybe someone who recovered reads this and sees some kind of similarity, but I realise that is unlikely.

I just want my life back. I have my own business which at times can be physically demanding and I don't know for how much longer I can do this.

I had to push myself past my limits the past few weeks, and I'm just now settling down. My brain fog and DPDR are a lot worse and I'm trying to figure out if it's because of that. If so how is that even possible?

I actually felt pretty decent waking up today. Went to the beach near me did some stretching, some calisthenics, even jogged up and down the beach once (small beach).

I waited a long time into the day to take doxycycline and now Abilify which my psych lady recommended for derealization. Honestly I felt better before taking anything so I’m kind of pissed.

I took my youngest daughter to the arcade earlier. This is what I see in a place like that. What I see is almost like a zoo. Little kids running around, older adults. It feels like we’re all just animals walking around this planet in some weird prison distracted by entertainment and fueled by money. It’s so weird and disturbing. It’s like I can’t relax and enjoy my life like the people around me.

I just remember when it wasn’t like this. And I have no clue how to get back there. I’m only 36 years old and I have two young daughters so I’m hoping to be around a while. But it’s going to suck if it’s like this. I just want to feel normal so badly again. Be myself again. It’s like my identity and life is slipping and slipping away even though I’m still here.

Anyways, I was more hopeful this morning so I don’t want to lose sight of that. It’s just hard. I’m constantly analyzing people thinking about their brain and anatomy and just weird bizarre shit. I was never like this. I was very relaxed and always confident up for a good time.

If anyone knows how to come out of this DPDR please let me know. I have no clue how to get out and it’s killing me.

Praying for us all. 🙏💪❤️

i'm 19 and my family is splitting up and everyone is moving out, everybody says my pain is not real and i need to do more. I love my family and it hurts they don't believe me and they are leaving

I don't want to live alone or with some distance relative or move to a different country. I want to live with family but it's not working out anymore

I WANT TO DO MORE it's just my body won't let me. Every month i'm getting worse now i can't even focus more than 10 mins before i feel so fatigued. I'm so scared because the pain is getting bad i don't know what to do.

I sleep all day and my long covid is undiagnosed so i can't even get SSI.

I'm scared i'm going to end up forcing my body to further disability by working full time or going homeless.

I think i've acquired adhd becasue of this long covid and it's ruined my life.

I feel like a loser i just rot in my bed all day.

Hey everyone! Recently got covid for the third time, directly after a 2.5-week-long RSV infection that left me pretty immobilized. I took five days of paxlovid for the covid and am now finally symptom-free after a month (edit: 2.5 week rsv, 1.5 week covid) minus the odd fact that I remain unusually fatigued despite ample rest. After walking just a mile, I have to sit down and I can feel my heart rate slightly elevated.

I’m usually fairly active, walking several miles a day and weight-lifting 2x a week. I would like to get back to my baseline exercise level, but know that pushing it too hard can make you more prone to long covid. When do I know it’s safe to do return to more strenuous physical activity? Thanks so much.

does anyone with neurological symptoms smoke weed? if so has it made your symptoms better or worse?

I have a 3 year old that starts preschool this fall. I'm pretty nervous about the onslaught of illness that we're about to face. I have the ME/CFS and POTS type of LC so I feel like a bag of 💩 all day every day already and am not all that functional.

What's been your experience with sick kids? Have any of you been able to successfully avoid getting all the bugs your children bring home? Have any of the illnesses made your LC more severe?