Hey everyone.

I live in a very large city in Europe (10+ million people). And in my hometown, you can see many people wearing masks in buses, trams, metros. We, the mask-wearers are not a majority. But, still, many people are aware of the dangers of Covid reinfections. Whatever. Last week, I visited Amsterdam for the first time after 6 years. As a longhauler, I wore my FFP3 everywhere except outdoor spaces, away from crowds . In my flight to Amsterdam, there were only 2-3 people who were wearing masks. But, in Amsterdam, there was literally NO ONE wearing a mask. I've just spotted a few Asian tourists, a man in the supermarket and an older Dutch lady in a tram. I could not believe my eyes. It looks as if the Dutch are completely immune to Covid and Long Covid. People were staring at me as if I were an alien. One day, I was at the supermarket, buying some fruits to eat. Of course I was wearing my mask. I was passing by a lady and she murmured in Dutch, turned her face towards me and told me something in Dutch. I said "Excuse me, I don't understand Dutch." So, this nosy Dutch lady told me: "Are you afraid?" I said: "Afraid of what?" She said: "Getting ill." Of course I was in a rush and did not want to spend my time lecturing an ignorant Dutch lady about the effects of Covid and how awful Long Covid is. I just said: "No. I'm not afraid. I'm just taking precautions. I'm currently travelling, and I don't want to get sick and spend my limited time here in bed." And she looked at me with a blank face :) I believe what I said was pretty understandable and reasonable. She told me "Ok. I wish you happy holidays." I turned back and walked towards the cashdesk.

A few days later, I've flown to Rome. Visited numerous museums packed with thousands of people. The situation was no different than Amsterdam.

And I should add, everywhere, literally everywhere, in the airports, museums, cafés, walkways, I've come across hundreds of people coughing their lungs out, yet still keep on living. I can't get it...Why are you torturing yourself? If you're ill, simply, just stay in your damn bed. Why are you doing this to yourself? Why are you spreading your illness to others? I literally hate most of the people on this earth.

This paper discusses paradoxical B12 deficiency which is where there are other issues causing serum B12 levels to be normal on assay. However, B12 isn’t able to be used for several different reasons leading to a ton of symptoms to include CFS.

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.

Woohoo! It's the 5 year anniversary of me getting COVID.

I've been keeping a step count going, to measure on a long term roughly how well my recovery is going. I posted it last year or the year before - here's the latest!

The last two years I've hovered around 5,000 steps per day. I'm on a small upswing the last few months. I've been eating a gut-health focused diet, mostly due to another condition (Ankylosing Spondylitis, apparently triggered by COVID) and it's suiting me well. No dairy, sugar, alcohol, caffeine or bread, and where possible swapping out pasta and potatoes for beans and lentils.

I work from home, and feel lucky that I've got a supportive spouse, no children, and a manager that doesn't mind that my IQ has clearly dropped about 20 points! My drumsticks and bike are gathering dust, I don't really drive any more, my hobby of making music has slowed to an absolute trickle, and I haven't been to a club or pub for a decent night out since early 2020. Just the thought of four hours in a busy noisy environment exhausts me.

But I'm still here, still plugging away, and sending solidarity to all the other 5-year crew in the forum. And of course, all our more recent friends!

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.

It’s crazy expensive, if there’s a really good chance it’ll actually help me then obviously I’d do it but I’ve heard mixed things. Please let me know if you have any experiences with it and what and how it’s helped you or if it hasn’t at all

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.

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?

I’ve had LC since 2021 from both the jab and actual COVID. I’ve noticed that now my inflammation is so much worse even when I get other viruses.

Ever since I got Covid I always get chest pain when I get inflammation. Sinus infection, or flu, or just a regular cold, now I always get chest pain. Pain in my hands, too.

Has anyone else dealt with this phenomenon? That your Covid/LC symptoms carry over to sicknesses that aren’t Covid?

So I'm immune compromised, and covid has put me through hell and back. First it started with long covid with no symptoms, but I felt extremely fatigued all the time. The doctors had no idea what was wrong with me. I then caught a newer strain, tested positive, and was given Paxlovid. My energy levels tripled only 24 hours later.

Then a year on, I caught another strain. This time with a dry cough. Same thing, went onto Paxlovid, felt better but was still left with very inflamed sinuses.

Well it's been 5 months, and frankly, I still feel terrible. I have thick gluey white and yellow mucus coming from my nose and sometimes when I cough. My hearing is almost non-existent from the swelling. I've noticed, strangely, that the symptoms get worse if I eat or drink dairy.

Been to my GP numerous times, and tried several different antibiotics. They have made no difference whatsoever. I still have inflamed sinuses, my ear burns on the left side and my eardrum is apparently very inflamed but with no sign of infection. They've given me PPI's and antifungals. Went on a long course of both (1-2 months). Nothing has made any difference.

So despite not testing positive, they've given me Paxlovid again to see if I have long covid. I started yesterday and woke up this morning blowing out huge thick green chunks of mucus. Is this a good sign that my body is now finally fighting it off?

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’ve seen a few posts like these and I wanted to share my story. I am going to preface this by saying I have a family history of autoimmune issues so I’m not going to rule out that my problems aren’t exasperated by my genetics. But after getting COVID and the vaccine a few years ago, I would notice these weird tingling sensations either in my head or groin. I’d take some ibuprofen and they’d go away in a few weeks. Didn’t think much of it. Then in the last year, I developed by bi lateral tingling in my hands that was worse when bending my elbows. My elbows are jacked from Jiu Jitsu so I didn’t think much of it. Then I injured my ankle and my ankle burned for 4 months. I got surgery on it, and post surgery I had what I can only describe as a complete attack on my nervous system. Severe burning in both feet, crawling sensation in my legs, burning in my hands, vision changes, autonomic issues, bladder retention, GI problems. This lasted for 3 weeks before I sought help.

Freaked the F out, I went to the hospital and they told me nothing was wrong. Gaslit me into saying it was in my head. Thankfully my urgent care thought maybe something autoimmune might be going on and they prescribed me prednisone. That alleviated a lot of my symptoms.

I then followed up with a Rheumatologist. All of my tests came back negative with the exception of an Early Sjogrens panel. That’s not enough to diagnose Sjogrens. But thankfully he doesn’t care and is treating me regardless. And I’ve been prescribed Gabapentin and Duloxetine for the nerve pain.

All this to say, I may or may not have Sjogrens which can cause SFN and Dysautonomia. But what I can say for sure is that I never had any nerve problems until COVID rolled around and I think it awakened an insidious beast inside of me. I’m hoping some of the immunosuppressants I’ve been prescribed will be enough to keep things at bay and help me to heal. I also hope that I can get IvIG.

29M w/ 3+ years of long haul

TLDR: Deep, prolonged, focused breathing/meditation last night offered great relief and led to me feeling like my pre-COVID self for a good portion of the day.

I have had ups and downs over these few years, including one confirmed reinfection about 1 year ago that certainly didn't help. The last couple months have been especially rough, in part due to added life stress and quitting nicotine.

While I've had some periods of feeling better, even for weeks or months, I don't think I have ever felt back to normal. I can maybe remember a few instances of "wow, I feel some real relief and hope", but often after starting a new supplement or something else.

I have meditated throughout my life (on and off for at least 15 years) and, before COVID, could rely on this for immense relief and mental clarity. It has been very hard since having LC.

Last night I had a different level of commitment, deep patience, and focused breathing that, along with mental intentions, allowed for some immense physical relief last night. While that was nice, the greater joy and surprise was how I felt today. I have been in a bit of a crash (even again now as I write this, still up at almost 5am). But, the first half of this day, I felt so shockingly well, clear of mind, free of physical discomfort/fatigue, and really did feel like I was my old self.

I am not saying I am cured and I am always cautious at this point to not get hopes to high, but just that glimpse of true wellness and normalcy gave me a feeling of "Maybe I don't have to feel so awful forever. Maybe I can get over this".

I exerted myself and did things throughout the day, resulting in declining a bit back to normal discomforts, but I do believe that the deep, prolonged meditation (kind of similar to yoga nidra), with an intention and focus on relaxing the nervous system, can offer immense relief. It is very hard, even for me with experience meditating, but I so strongly encourage others to explore this as you are able to. Requires no energy/exertion and can be done even if you can't get out of bed. Again, I don't want to promise anything, as everyone is different and it is very challenging task to do effectively, but I was almost in tears today just to feel the glimpse of normal that I had. I hope you all can have that too and possibly even see if this can help develop lasting healing if done consistently.

Very severe, can’t talk or tolerate anything.

Yesterday I had a medical appointment at home, I had the chance to stay in my bed but I still had to talk a bit and stay in the light for 15 minutes. During it I suddenly had a scary attack, sudden onset of extreme DPDR and confusion, then there was like a heat wave or electric wave that traveled across my whole body and brain, it made me very weak and I thought I was about to collapse. I then had extreme racing thoughts, hallucinations and and hot flashes during an hour before being a bit better.

Then this morning I had a similar thing happening while looking at my phone, sudden wave in my whole body, I now feel like I’m on the verge of having a stroke from nearly every stimulation. What do you think this is? It doesn’t really feel like my usuals adrenaline dumps, it feels more related to the cns or brain. Thanks

• The mental counting I talked about in a previous post, and I was so agitated that I even did counting by twos, counting backwards, etc. to make it extra good at taking my mind off
• 4-7-8 breathing -- too much can make me feel too energetic and becomes anti-synergistic with sleep, but a few rounds of it can work in bed to interrupt physical anxiety
• Dumping/venting to an AI model about the stressful event that preceded the insomnia. It might sound weird if you have never tried it, but it is surprisingly effective, particularly some of the better paid/subscription models paired with custom instructions (personalization about its tone/etc.). It's "not a person", but it is a great sounding board and can give me a more objective, less-anxious point of view.

I ended up getting 4-5 hours of sleep, broken up into two blocks, plus a quiet, comfortable, non-sleep resting period. I feel half-decent this morning. Without the techniques I think it would have been 2-3 hours at best.

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 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. 🙏💪❤️

Apparently at low doses it is a glutamate modulater that helps boost brain derived neutropic factor driving nerve growth, synapse formation, myelin repair, and reduced neuroinflammation.

Seen one or two posts on here and on the cfs subreddit that were encouraging

If so interested in dosage and your experiences!

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.

Anyone else get LDN from Dickson’s? Is it just me or is there less in the bottle lately? I feel like I’m having to get a refill much sooner than before so it’s kind of annoying (it was already too frequent - wish i could get two bottles at once to cut the admin).

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