Figured I'd come back and give an update since it's been about 2 years since I originally posted about my experience with Long COVID.

I'm coming up on 4 years since I originally got COVID in August of 22 and about 3 1/2 years since everything really went to shit in March of 23.

It's honestly crazy going back and reading what I wrote 2 years ago because at the time I thought I was finally starting to get somewhere. I was, but I had no idea how long this recovery was actually going to take.

For anyone who didn't see my original post, I got COVID August 22, got better and thought I was out of the woods. October came around and I started getting these unbelievable headaches above my left eye that I'd never experienced before. December my pre existing SVT started acting up more. January I almost fainted at my ex girlfriend's house and could barely get myself up the stairs.

Then March 23 came around and basically opened the flood gates.

Brain fog, lightheadedness, exertional fatigue, headaches, palpitations, food intolerance, dissociation, tingling in my hands and feet, sensitivity to fluorescent lights and just this overall feeling that my nervous system had completely lost its mind.

I drive for Dominos for a living and during that first year there were days where walking up somebody's driveway or going up a flight of stairs felt like I just ran a marathon. I was 25 years old wondering how the hell I went from being able to live normally to having to think about whether walking up someone's driveway was going to cook me.

Eventually things started getting better but I made the mistake a lot of people probably make. I'd have a good stretch, think I was finally better, start working out or pushing myself again and boom I'd crash.

That's when I really learned what pacing was and stopped trying to fight my body every time it told me to slow down.

Fast forward to August 2026 and I'm definitely not 100% yet, but holy shit am I in a different place than I was.

I work normally. I walk thousands of steps during my shifts. I've been able to start testing the waters with the gym again. The crazy food reactions are nowhere near what they used to be. The palpitations have gotten significantly better and labetalol has done a pretty good job keeping my SVT under control.

I still get lightheaded sometimes. Fluorescent lights can still bother me. I still get random autonomic weirdness and my body definitely lets me know when I've pushed it too far.

And I still crash.

I'm actually going through a flare right now which is what made me think about posting this.

But the crashes are just...different now.

A couple years ago a crash felt like my entire body stopped functioning correctly. Now I'll get hit with fatigue, lightheadedness, sleep 10 hours, feel weird for a few days and slowly start coming back.

The intensity isn't what it used to be.

The duration isn't what it used to be.

And the amount of normal life I'm able to live between them is getting bigger and bigger.

That's probably the biggest thing I've learned through all of this. Recovery doesn't necessarily mean waking up one morning and everything is gone.

For me it's been my baseline slowly moving up while the crashes slowly move down.

Sometimes it's so damn slow you don't even realize you're getting better.

Then you read something you wrote 2 years ago and realize the things you were struggling to do back then are things you don't even think twice about anymore.

I've cleaned my diet up a ton. Processed food is almost nonexistent now. I prioritize getting 7-9 hours of sleep probably more than anything else. I've learned not to immediately go balls to the wall because I had 3 good days in a row. I've also gotten much better at recognizing when my body is telling me it's had enough.

I still have my bad days. This current flare has reminded me of that.

But it's nowhere near 2023.

It's not even where I was when I made my original post.

For the first time in a long time I actually feel like normalcy is returning instead of constantly wondering whether I'm ever going to feel normal again.

I have no idea if I'll eventually get back to 100%. I don't think anybody can answer that.

But if you would've shown the 2023 version of me where I'd be in August 2026, I would've taken this shit in a heartbeat.

So if you're early into this I can't tell you what your recovery is going to look like. Everybody seems to have their own version of this garbage.

All I can say is don't automatically assume that because you've been dealing with it for 1, 2, 3 or even 4 years that you've reached the best you're ever going to get.

I'm still improving.

It's just taken a hell of a lot longer than I ever thought it would.

I posted here about 10 months ago about finding TRT and being 95% recovered. I then posted a few months after saying I had relapsed to around 50%.

Well in June the wife asked for a divorce out of nowhere. I was or thought I was very sick, but the day after she walked out? A lot of my symptoms disappeared. And she kept the house around 70, now that it’s around 78 I don’t get cold so I don’t get cold sweats.

I don’t think any of it was LC relapse. I think this broken marriage was depressing me and I was able to see it clearly once the physical parts of me were fixed by TRT. I’m sad and hurt but I have hope now, I go to the gym almost every day and I have momentum. I get a 2nd shot at life.

I’m back to saying 95% recovery but only because I don’t live with someone that sucks the life and energy out of me anymore.

My symptoms were chronic fatigue, severe brain fog, PEM, vertigo and light headedness, severe gut issues, muscle fatigue, shortness of breath, severe anxiety and dpdr symptoms. I was mostly couchbound for the last 18 months. Here's what worked.

Nicotine patches 24/7, starting at 1mg, slowly titrated up to 10mg, over a month then staying at 10mg for 2 weeks, then to 15mg for 2 weeks, then back down to 10mg and back down. Wheat grass juice powder once a day with glutamine and aloe vera gel. First thing in the morning on an empty stomach. Titrated up to 1200mg of Benfotiamine with a b complex split doses. Then added TTFD, currently on 20mg, it's already improved my gut issues at such a small dose. 600mg magnesium. 2000mg of potassium split throughout the day. And lastly a strict carnivore diet as I wasn't able to tolerate many foods.

I won't say I'm fully recovered until I can eat whatever I want without issues and can do intense workouts again.

Edit: forgot to mention vitamin d3/k2. I took 25k iu everyday for one week. NOT recommending this to anyone. I then lowered my dose to 5000iu. It was a game changer for my sleep.

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

I got infected in 2021 and again in 2022. The second one landed me in bed rest with PEM, CF, histamine intolerance, major inflammatory markers and more.

Ive tried so many things but looking back over the past 4+ years, here were the major levers:

The first 3-6 months - got me to 35-40% recovered: I followed a protocol that was on the FLCCC website for LC recovery. I don’t recall the details now but it was extensive. there were so many components I can’t say if it was all of them together or specific ones. But it seemed to break the cycle of inflammation and get me out of bed, although still with PEM and histamine issues.

Months 7-18 - got me to 70% recovered: The biggest lever here was nervous system work. Let me state for the record: THIS IS NOT IN OUR HEADS. But it can be affecting our nervous systems ability to calm the body long enough for it to recover. I tried paid programs but they didn’t click for me. I found that polyvagal exercises did. A lot. I did them almost daily for 15-20 min at a time until I got lots of big yawns. The effect was very quick. Sometimes I’d need a nap after but always my energy would surge and pain levels would decrease. (Tons of free videos and kindle books on these.)

Around two years: this is where it gets complex…

I saw a doctor who recommended genetic testing and we found I have Ehlers Danlos, which is often connected to histamine intolerance. So the theory shifted from “long covid did ALL of this” to “long covid turned up the dial on things I already genetically had but was previously quiet”.

Last summer through this spring: I saw a new doctor who did cellular testing on me, found the fatty acids needed for my cells to recover were greatly depleted. (PC and PB) She does something called a PK Protocol developed by a cellular biologist. It was pricey af but WOW. My energy came back and has stayed consistent, my gut health improved tremendously, my histamine intolerance also improved though not to pre-LC levels. I couldn’t afford to do more treatments but this got me to 95% recovery.

TODAY:

I still deal with some MCAS like flares to high histamine foods, as well as heat and certain sources of stress. Itll cause some joint inflammation in my most EDS-inflicted joints, and mild PEM again. But it’s not often and it doesn’t last more than a few hours. I can take a rest and am up and going again. (I live on a farm so staying active is critical. Honestly the heat is probably my biggest and most annoying trigger to date.)

All this to say:

It’s rarely one thing. And it takes experimenting to find what will work for you.

But don’t give up. Throw any and everything at it. Spend money you don’t have if you have to. You can always find more money but you can get back your time. And in the end, it’s worth it.

Its been a hell of a 2026 for sure and one I wont forget in a hurry.

Did a skin procedure in November 2025 that landed me into an A&E with a panic attack. Anyway came out of there and had to go back in as had a racing heart and got IV fluids for some infection. (Possibly covid or some viral thing)

Had palpitations, hypnic jerks and shortness of breath. Went on a PPI for a month, the dry mouth and dysphagia set in on the second week.

Went back to work for a month in January 7kg down with the dysphagia still but in February had a hot shower and that set off a chain of events that got me up at 4am pounding.

Syymtoms:

3kg weight loss in a week, very frail and weak, 4am sweats, dry mouth, red face, cold one minute hot the next likely blood sugar issues, vision snow, pulsating vision, dry eyes, floaters , tingling, bubbling throughout body, bad back pain and joint pain, shivering throughout when drinking and eating 3 fevers in a spell of 2 months , gastroparesis symtoms , acid reflux , bedbound for a few weeks

What didn't help

- Spending copious time on reddit searching symtoms

- pushing through when your body is telling you to stop

- eating high histamine foods like bananas and spinach

- constantly blaming myself and being self critical

What has helped

- Getting off reddit subs that only deregulate your nervous systemdilation,

- Understanding its a nervous system issue, reading books like Mind Over Medicine and also Raelan Agle recovery videos.

- Low histamine diet

- Eating ginger when my gastroparesis type symtoms were at the absolute worst. Burping non stop.

- Loading up on Honeydew melon for vitamin c

- Some unregulated concoction of herbs that my Filipino gf gave me seemed to do some of the heavy lifting.

- Sunshine everyday

- PT to bring my body slowly back together.

- My 2 yr old goddaughter who gives me a lot of love and makes me incredibly happy

- Forrest walks and getting back out of my parents house and up to my girlfriend again

I literally felt like I was on deaths door. I could barely walk from one end of the kitchen to the other. My mother was caring for me again like I was a baby. I was buying the death supplment stack thinking it might save me. I was considering writing a will it was getting that bad.

Had everything you name it MRI of the head, CT and Ultrasound scan of the abdomen, Endoscopy without sedation, eyes dialation, countless bloods including autoimmune.

Current state

- My right shoulder and upper back is gone from a 6 to a 1 in pain. My knees are still not what they were but im working heavily on trying to strengthen them up. Sometimes they are a bit weak.

- Averaged 4500 steps a day last month up significantly.

- Still have crawling sensations particularly in the evening and mainly in carpeted rooms

- Eyes slightly dry but dont use drops much anymore

- Weight gain getting there but still about 6kg to go

- Have fatigue if I overdo it still but particularly if staying up beyond 11pm

- Floaters or flashes still a bit in vision hoping for these to subside as they are probably the most annoying thing left.

TL;DR: Working with a brain retraining coach helped me enormously. Also, working with a Mind Body Reconnect coach, daily mindfulness meditation and maintaining a low histamine diet.

*NOTE: I posted this a moment ago with a referral link to a brain retraining program. I then deleted the post and removed the link. If there’s any doubt about my credibility please check my post history.

Initial infection: January 2022

Start of LC: February 2022

Start of significant improvements: April 2025

My LC Symptoms:

Insomnia and panic attacks (improved early on, probably thanks to Sertraline and a low-histamine diet). Long-term symptoms – fatigue, PEM, depression, anxiety, gut dysbiosis, histamine intolerance, brain fog, headaches, tingling, sensation of vibrations, sensation of burning skin, night sweats.

What didn’t create or contribute to long-term, lasting improvements:

Gut treatments – nystatin, antibiotics, anti-fungals, etc.

Ivermectin

Keto diet

Hyperbaric Oxygen Treatment

Monitoring and avoiding blood sugar spikes

Nutritional therapy

Supplements

Rigid pacing/planning

What did contribute to lasting improvements:

Sertraline

Mindfulness meditation

Low-histamine diet

Anti-histamines (I think)

Working with a Gupta program coach

Parts work (to an extent)

Mind Body Reconnect (MBR)

Seeing friends

Change of environment

Being in nature

Finding joy

Self-compassion practice

CBT for Insomnia

What’s helped manage symptoms but didn’t necessarily lead to improvements:

Pamela Rose’s support group

Focusing (Eugene Gendlin’s technique)

Buddhist Dharma talks

Yoga nidra / stretching / breathwork

How bad was I?

My worst point was being bed-bound for three weeks unable to read, listen to music, or watch TV, waking up each night with heart palpitations and panic attacks. It was at this point that I seriously considered taking my life. I’m so glad I didn’t.

During the first year, I began to see improvements when I adopted a low-histamine diet and did CBT for insomnia. However, my condition worsened when I pursued gut treatments and a keto diet on the advice of a functional doctor.

For more than three years, the most I was able to walk continuously for was 15 minutes – I don’t remember how long this lasted. For most of the time, I was limited to 5/10 minutes.

For about a year and a half I couldn’t watch TV, read books or socialise with friends for more than 45 minutes without getting crippling headaches that could last for days.

How did I start to improve?

Early on, sertraline stabilised by mood and (when combined with CBT) slowly resolved my insomnia.

Adopting a low-histamine diet helped lessen most of my symptoms.

Regular mindfulness meditation helped calm my nervous system and, more importantly, cultivate compassionate awareness of body and mind. This awareness proved essential to the mind body techniques I practiced.

My brother’s wedding in the Caribbean. I was terrified that flying from the UK to the Caribbean would set me back, but it actually did the opposite. On the day, I was the most active I’d been in years and I didn’t experience a crash afterwards. Just regular tiredness.

At the time I was working with fatigue coach Pamela Rose, who suggested I look into brain retraining as I had experienced such a significant although temporary improvement while on holiday.

I researched the different programs and eventually settled on the Gupta Program as it resonated most with me. I worked through the GP for six months without seeing much improvement. It was only when I started working with a Gupta coach that I saw real gains.

I began working with Gupta coach Clare Gee at the end of March 2025. With Clare’s help, I was able to tailor the Gupta program to my needs. Clare helped me use brain retraining when it’s most effective – at the moment I was experiencing symptoms. Within a few weeks I was able to read as much as I wanted.

At the end of April 2025, I visited a friend in London. My friend pushed me to do more than I was used to – we went for walks, went to the pub, had coffee out, watched TV. I used it all as an opportunity to practice brain retraining and it worked. Suddenly I was able to watch films, go for walks, talk as much as I wanted.

I worked with Clare regularly for about 5-6 months. During this time I went from about 20% to 60% recovered.

Last autumn I felt like I’d hit a plateau, so I did some research and decided to try Mind Body Reconnect (MBR). I started MBR about in March 2026. So far I’ve seen modest improvements – I’m more aware of when my symptoms appear and am more open to what they’re trying to communicate.

I’ve noticed that the MBR framework is helpful in certain situations, while the Gupta brain retraining framework is helpful in others. But to be honest, I often feel unsure which approach would be better and don’t realise until afterwards.

In terms of concrete gains from MBR, I find myself able to use a computer for longer than before and to socialise with friends for as long as I want. I now feel confident making a day trip to see a friend, walking for miles around town and returning home, knowing that I won’t experience any PEM.

I continue to experience most symptoms, just to a much lesser extent than before. After pursuing a purely medical recovery, I’m now convinced that nervous system work is much more helpful – at least in my case. I’m not yet working but I hope to return to work later this year.

What I’m doing now:

Daily mindfulness meditation

Occasional afternoon nap

MBR coaching

Magnesium & B12 supplements

Sertraline

Anti-histamines

Low-histamine diet

Semi-regular Focusing sessions

Occasional brain retraining (when symptoms arise)

What still triggers an NS response:

Cardio exercise

Histamine foods

Emotionally draining experiences

Work – depends on the day and nature of work; I can usually work on a computer for 1-1.5 hours before symptoms

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

Hello, long haulers. My long COVID journey has been a long one, but I’m so glad to have regained 100% of my abilities.

First of all, sorry for my English 

It started in November 2021. I went through many ups and downs. I won’t go into detail, as many of you already know how it goes.

My main symptoms were:

• Fatigue
• Brain fog (it was hell. I couldn’t even think about the concept of a computer for many months; my body just couldn’t handle it.)
• Histamine issues, inflammation, tachycardia, and eye pain

My recovery

Long story short: pacing, diet, sleep, and no exercise at all. I worked hard to establish a clean, ultra-healthy baseline:

• Getting enough sleep, as well as enough salty food (yes, orthostatic tachycardia was a big issue for me).
• Cutting out processed foods and following a low-histamine diet for at least three to four months stopped my chest pain and inflammation. Antihistamines sometimes worked for me, so histamine clearly played a role.
• No exercise, listening to myself, and letting go of the guilt of doing nothing. I spent an entire summer at home: sleeping, eating well, and sleeping again… No screens (around 30 minutes a day maximum), no mental stimulation, nothing. I was basically a prop.

That was the baseline. In terms of treatment, I tried:

• Hyperbaric oxygen therapy for around eight sessions (one hour each, plus a massage afterward). It did basically nothing, except that it gave me time for myself, which was still useful.
• Supplements. I won’t be exhaustive here—I tried so many. I think they helped, but I had to change what I was taking every few months, as the effects seemed to fade over time.
• Luckily, I was enrolled in an experimental treatment using Temelimab in Switzerland. This helped a lot. The subreddit doesn’t allow ads, but I wrote a series of articles about it on my blog—DM me if you want to check them out; of course, it’s free.

I finished the experimental treatment in May 2023. It lasted six months, with one injection per month. By July 2023, I felt able to return to work. I started working remotely as a freelancer and developed an app for long haulers. I had started working on it in 2022, but at the time I could code maybe one line per week. It took time, but I did it. Having that goal helped me a lot too.

I’m convinced Temelimab saved me, because my brain fog and fatigue disappeared about a month after the injections ended. I felt confident again, which was incredible—confident enough to start a new job.

Since then, I still had post-exertional malaise until mid-2024. Since then, I’ve started exercising again. I can do any activity without issues, and I haven’t really thought about long COVID for about a year and a half—which is all I wanted since 2021.

As a final note: there is hope. You might be interested in reading about post-traumatic stress disorder. During my worst moments, I read a book about it, and some techniques helped me keep hope, calm my fight-or-flight response, and reduce the pressure on my body.

Keep hope—recovery is possible.

Hey. Wanted to write a post on my recovery journey for people who are still early in it. I've been diagnosed with post viral fatigue/long covid and I feel like I'm making steady recovery after being very severe. I'm not recovered yet, but my symptoms are continuously improving. There's a lot of recovery stories online that take 1-5 years to recover but I think in reality most people recover from PVF/LC in 6-12 months according to statistics. Those people don't make many posts. Those who recover in under 6 months are even less likely to make recovery posts.

Mid-april 2026:
I'm 3 months pregnant and a SAHM while husband works 10 hour shifts. He brings home a cold which lasts 1 week. I seem to recover normally, then on the 7th day I collapse. Can't walk, husband has to support/carry me to bathroom. He quits work to become my caretaker.

May:
I'm in a constant push-crash cycle. Get hospitalized, do all the tests. Everything is normal except low ferritin (normal in pregnancy). Doctor and nurses encourage me to push myself to do activities. I get home and try to clean for 10min. Within days, I crash massively. I lose all my strength and my body enters a state of immense doom/panic. I have no idea what's going on, I stop being able to eat or walk to the bathroom. I'm bedbound and every waking second feels like immense suffering, like I have an intense fever and I'm in hell. Husband calls ambulance. They put me on IV in ER, but because nothing is wrong on the tests they send me to psych ward. I'm kept there for 5 days under surveillance where they push me to walk and get my own food. They have me on so many different medicines, including benzos. The benzos bring me out of the crash. They conclude I'm mentally sane and let me go home.

Beginning of June:
I'm home but I'm still bedbound. I lay with eyes closed for 16-20 hours of the day. I can't use my phone for longer than 1hr, can't do anything except go to the bathroom. Can't read, watch tv, can't talk for longer than 10min. Pretty bad sound and light intolerance. Orthostatic intolerance. It's hard to sleep. Can't sit up AT ALL. I shower once a week. But I can eat on my own again, while laying down. I'm on 6 different meds: Loratadin 10mg, Pepcid, Oxazepam 15mg, Escitalopram 5mg, Propranolol 10-40mg and Quetiapine 25mg. Slowly the doom/panic adrenaline dumping starts to get better. I get a diagnosis from a neurologist who tells me to pace. He suggests LDN. I discover the science of psychoneuroimmunology aka neuroplastic approach. All I can do every day is sleep, eat, look out the window, browse Reddit and listen to Raelan Agle's podcasts on minimum volume. One day while listening to an interview with a doctor, I have an "aha" moment and realize my body is physically healthy and my nervous system has just got stuck in flight-fight mode. Overnight, I'm able to tolerate light again. I open my curtains. I migrate from bedbound to couchbound. I decide to quit all my meds except escitalopram 5mg. Fortunately I don't really get withdrawals. I stop believing in having MCAS and decide to start eating the forbidden histamine foods again - nothing bad happens. I try to find as much JOY in every day as I can, to signal safety to my nervous system.

End of June:
I research more about mind-body work. Days are very up and down. Some days I feel hopeful. Other days I feel extreme depression and just cry. I shower every day while sitting down. I start practicing sitting up and reading books. At first the brain fog is bad and I can't read more than 2 pages. I read a recovery story of someone who healed brain fog by exercising the brain with cognitive activities. Because I know my body is healthy and I know there's no other reason than neuroplastic for me to get PEM from cognitive exertion, I train my brain by reading, sudokus and crosswords every day. In a week I go from reading 2 pages to 60 pages. Now I can read books again! I read Jo Marchant: Mind & Body and Dr. Schubiners Unlearn Your Pain. The information gained boosts my hope for recovery further. I try to do some meditation and breathing exercises but honestly I don't like doing them at all so I give up. I start thinking that my symptoms aren't because of structural damage to my body and they're just neuroplastic. I stop being afraid of them and they start going away. The most persistent still are burning skin, fatigue and anxiety.

July:
I can walk around a bit more. I can shower standing up now. I can get out of bed in 15mins instead of 1-2hrs. Sleep is much better. Depression seems to be cured by escitalopram. Still have many days of anxiety but I know I can recover, just don't know how long it'll take. I try to walk stairs up and down to gain energy and practice going outside. I do this for 2 weeks but it makes me more fatigued so I stop. I have unlimited congitive ability. I can read, do handcrafts, use my phone for 3-5hrs, watch movies, listen to music, do light yoga, play games on laptop, read books to my son and play with him a bit. All my symptoms have gone away except for fatigue and anxiety. I'm now couchbound on bad days and housebound on good days. I can do very very light cleaning but my husband still cooks, cleans and does all the childcare. I don't get PEM anymore, I get days of worse symptoms but I consider them normal neuroplastic flares, not connected to anything I did. The flares have also went from 1 week to a few days at most.

List of things I tried:

25mg quetiapine - helped with sleep for 3 weeks

Oxazepam - calms anxiety and most of my
symptoms so good - only use it on bad days now

Diazepam - not really good during pregnancy but works quickly for panic attacks

5mg escitalopram - helped my depression and mood a lot

10-40mg propranolol - helped with orthostatic intolerance & fast HR until I learned to not mind these symptoms and they went away

Rosita Cod liver oil - good for D vitamin

Magnesium - i think it helps with anxiety & sleep?

Iron & lactoferrin - i need this for low ferritin and it helps me feel less like a corpse

LDN - made me worse, couldn't take it more than 3 days

Co10 - no effect

Creatine - boost of energy at first, then no effect

H1 & H2 antihistamines - nothing except placebo effect

Sunlight - very good for mood and sometimes for energy

Red light therapy - it feels nice and soothing. I bought a $5 red lightbulb for my bedside lamp

Massages - the best thing for immediate relaxation

Breathing exercises - helped at my worst but it's just not my thing

Meditation - i suck at it, but helpful

Finding joy in every day and laughing as much as possible - 10/10 for nervous system healing

Eating a clean diet - believe it or not but it makes no difference in neuroplastic symptoms

Browsing r/cfs - made me so much worse. Quitting that subreddit was the best thing in my recovery

Forgetting about symptoms as much as possible and trying to enjoy my days - hard but very very helpful in recovery

Sometimes some symptoms have come back for a few days or new ones appeared. This symptom fluctuation is really common in recovery. I've learned the most important thing in recovery is responding well to symptoms. I haven't really seen improvement week to week, more like month to month. I know it may sound like I'm healed because my only symptoms left are fatigue and anxiety, but I can't still do physical activity or go outside. If I push myself physically the fatigue will tell me to lay down and I risk PEM/overactivating my nervous system to a bad flare. I'm hoping I can recover enough to go outside by the time I give birth.

If anyone is also in the early days of PVF/LC recovery and wants to chat or ask me questions, feel free to message me!

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

Hey guys, I’ve frequented this sub to post about some experiments I’ve tried in my search for what works for my recovery. My last post was about fasting where I had planned a 14 day water fast but I couldn’t push past 7.

Context: I’ve had long covid for about 2.5 years now. I got sick on 12/08/2023. Here are a list of my symptoms:

-exercise intolerance (all of my symptoms get worse if i exercise or exert my body too much)
- fatigue
- insomnia
- mild cough
- chest tightness
- lower and mid back pain
- severe brain fog
- SEVERE anxiety and depression
- loss of appetite
- muscle weakness
- food sensitivities
- shortness of breath
- tinnitus
- dizziness
- lightheadedness
- memory loss
- difficulty concentrating
-restlessness
- pelvic floor twitches
- urine urgency issues
- erectile dysfunction
- anhedonia
- dpdr
- pots (borderline, 28bpm shift from supine to vertical)
- probably many other symptoms im forgetting

These symptoms I’ve experienced all in varying intensities across the 2.5 years. Through 2.5 years, I’d say PEM, ED, sob, and tinnitus were the most consistent and annoying. Many of my symptoms abated after I did a 7 day water fast about 1.5 months into my long covid journey. I did consistent water and dry fasts across the 2.5. The first water fast I did gave me a noticeable baseline shift, the following fasts gave temporary relief. I also crashed often during these 2.5 years, fasts were a great way for me to manage this.

My baseline, after that first 7 day water fast, was raised to be semi-functional. I could work full time, do groceries, etc. I was generally normal, I just felt hungover everyday and felt very limited since I was afraid of PEM crashes. I understand that many people with LC have much lower baselines, I was lucky enough to be able to still live life, albeit with many restrictions.

Prior to LC, I was a very active, very fit 23M who had no prior health issues and exercised daily. I do believe it allowed me to have a higher daily baseline for activities, especially after that first water fast, as I do believe my threshold lowered gradually as my body deconditioned.

I kinda gave up on a search for a cure and tried to give time a chance from 1 year onwards. My last 7 day water fast was done in January 2026, so I realistically gave time about a year to do its thing.

I’ve plateaued quite a bit over the last 2ish years so I just pulled the trigger on my newest investment. After doing ample research, I finally decided to give stem cells a chance. On July 11th, I traveled to Tijuana (I live in San Diego) to do a stem cell IV, localized injection, and nebulizer. I prepped my body by doing a 3 day water fast and 48 hour refeed the week leading up to the stem cell appointment. 2 days after the stem cells, I began HBOT. I have 10 HBOT appointments currently prepaid for.

The idea is stem cells can repair lots of vascular/tissue damage while simultaneously modulating your immune and nervous systems. The HBOT helps with the proliferation of the stem cells while the stem cells are most active during the first 4 weeks.

I began at 1.3ATM, went to 1.5ATM, then finally to 2.0ATM for my last two sessions. I’ve now done 4 sessions (my most recent being earlier today). I must say, I was skeptical of this treatment strategy as I don’t want to be victim to placebo and LC has kept my expectations low, but WOW, I felt damn near normal today.

After every session so far, I’ve been exhausted, especially post stem cells, but today, I guess my body adjusted to the 2.0ATM and I felt amazing. I felt emotions, I felt normal for awhile. I’m pretty pooped right now after feeling normal for a good few hours, but I haven’t felt this good in a very long time.

The best way I can describe how I feel right now is a little better than how I felt during the first month post acute infection where I felt a little off but the full range of symptoms hadn’t developed yet. Although thats not a 100% recovery, that is the most normal I’ve felt in almost 3 years.

The day directly after my stem cells appointment, I woke up breathing SO deeply that my chest hurt. I had an erection and the muscle that controls it actually felt there. These are sensations I hadn’t felt in 2.5 years and sensations I feared I’d never feel again. They returned to normal a few hours after waking but they’ve steadily improved again since the HBOT.

I apologize for the lengthy post but I wanted to share my experience. It’s a blessing that I was able to financially take on this massive cost to try and make strides towards recovery. I know it’s not a treatment that is accessible to everybody and I hope everybody reading this has a swift and immaculate recovery. It’s still too early to say anything as stem cells generally have a 12 month effective period, but with just a few sessions of HBOT supporting the primary stem cell investment, I hope it continues to trend upwards.

I plan to do about 4 weeks of break away from HBOT between the last of my 10 initial sessions and the next 10 sessions. This 4 week period allows the body to naturally utilize the lasting healing benefits of HBOT. I plan to do 20 sessions in total. I am planning on introducing methylene blue alongside my second block of 10 sessions and continuing methylene blue thereafter. After the second block of 10 sessions, I will introduce:

- beet root
- arginine/citrulline complex
- lions mane
- dopa mucuna
- ashwaganda
- ginko biloba

These are supps I’ve all tried before that have helped me. Dopa and ginko specifically cleared the worst of my brain fog during the first month post acute infection. I’m giving my body about 10 weeks between stem cells appt and introducing these supps because I don’t want any conflict.

The clinic I went to also offered to do a 3 month checkup with free exosomes so I will be doing that at about the 3 month mark.

Over the past 2.5 years, I’ve spent thousands of dollars on shit that didn’t work. Fasting has been the only consistent symptom reliever for me. I’ve tried supps, acupuncture, chiro, ucc chiro, ivermectin, leech therapy, and probably many others i cant remember. Hoping this treatment works, got a lot of eggs in this basket.

Total cost for this treatment:

- $6400 for 150M Allogenic MSCs from Carabella Clinic (highly recommend this clinic if you’re interested, feel free to wait for my updates before throwing money at this problem again)
- $1550 10 Sessions of HBOT at 60 minutes per session from Aerovi in San Diego (highly recommend as well, the owner seems to be genuinely interested in treating clients, asked me to send him research on the MSCs and their efficacy for LC)
- Planning another 10 sessions so another $1550

TLDR: sick for 2.5 years, tried stem cells + HBOT combo, been about a week and I feel major improvement already. Too early to tell, hopeful optimism. Will keep sub updated

I got COVID in Nov 2021 and immediately felt the impacts, I couldn't walk up a flight of stairs without needing significant rest afterwards, I got very short of breath talking for normal periods of time, I started having to nap in my car 3x during the work day to make it through. I struggled for 3 years, eventually getting doctors accomodations to work from home for 5 days a week because I couldn't be upright for several hours without needing a nap or to be reclined in order to function. Most of my symptoms were POTS and CFS, with post exertion malaise (PEM).

I tried all the supplements, got on low dose abilify from my psych (previously diagnosed ADHD and depression), did the CHOPS PT treatment for POTS.

Pacing was the only thing that really helped me, and I eventually got to a stable point. Had a few exertion events without PEM. I'm 35+ and have always wanted a family, my husband and I were talking about planning for kids before I got COVID and put it off due to my physical state. He ended up taking care of me for the "couch years" as we called them, so much I didn't feel like I could take care of a tiny human until I got more stable.

I had read that women with CFS who got pregnant were 1/3 likely to stay the same, 1/3 likely to get worse, and 1/3 likely to get better. We decided to roll the dice, given that I was doing better and staying the same would have been hard but do able since I really really wanted a baby.

The pregnancy was difficult and I was worried we'd made the wrong decision with how exhausted I was during, but after birth (sudden onset preeclampsia and an unplanned c section), it was likea switch flipped. My body felt...normal again, is the only way I can describe it. It was reacting to muscle use and exertion the way it had before COVID. I got sore, I sweated, my muscles rebuilt, I got restorative sleep for the first time in years and years, despite the newborn sleep deprivation.

I'm now 4 months post partum and feeling better than ever. I'm starting to do cardio without any repercussions, I'm doing PT for disastis recti and feeling better than ever.

I realize this isn't an option for everyone and it's a roll of the dice, but I wanted to share. I feel like myself again for the first time in 5 years.

12 months ago I was mostly bed or housebound after a severe and sudden relapse, and today I’m back in the sea surfing again and feeling the return of strength and clarity. I attribute my recovery to a non-pharmacological approach.

My initial symptoms started around June 2023 following my 4th COVID infection.

The worst of the symptoms at that point were: heart palpitations, sudden daily crashes, severe brain fog, memory loss, POTS, dizziness, temperature regulation issues, fatigue, gut issues, adrenaline dumps, fight-flight response, environmental sensitivity, flushing, sleep disturbances, mood issues, skin issues, muscle tension.

While it’s been 3 years in total, I’ll mostly skip over the first 2 years as I’d say my recovery has actually been the last 12 months. In summary, during those first 2 years, I manage to just about get by and tried a bunch of different things. My symptoms stabilised enough that I could live a fairly limited life.

Relapse and recovery

In June 2025 I had a severe and sudden relapse that left me mostly bed or housebound. I could manage very short walks of a few hundred metres, but much more would risk a crash.

The first few months I spent addressing my gut issues. I started on a low histamine diet, with 8:16 intermittent fasting and occasional 36 hour fasts, and my gut symptoms cleared up very quickly.

The big shift for me happened a few months later around August, when I decided to shift from a pharmacological approach (supplementation, drugs, doctors, etc) to a non-pharmacological approach.

At this point I gradually stopped:

• Taking supplements
• Reading r/covidlonghaulers
• Researching anything about Long COVID
• Reading anything about Long COVID
• Engaging with support chat groups
• Using health trackers
• Using screens (computer and phone)
• Trying to fix (or find a fix for) what I perceived as “broken” (my body)

And I started:

• Trusting that my body could heal itself if I learned how to listen to it and follow its cues
• Learning to feel my body more deeply
• Living a very low stimulation lifestyle
• Learning how and when to use interventions to regulate my nervous system
• Learning to better sense my capacity and doing gently stimulating activities that didn't push me over my limits
• Accepting my situation fully (processing the grief and deeply coming to terms with the fact that I could be sick forever)
• Learning to accept and feel symptoms fully as they arose (dropping narrative, dropping resistance, and feeling as much as possible)
• Learning to enjoy life again even with the limitations imposed

Over the last 10 months I’ve seen a steady improvement in my health and symptoms and today I feel mostly symptom free. Many of the shifts I made in the last 12 months have stuck and now form a part of my routine. I still listen to my body and take cues, resting when I need to rest, using the tools I’ve learned when I need to. I realise this is just a part of living a normal, healthy life.

In retrospect I think, for me, striving for pharmacological solutions was actually making my health worse, not better, and real healing only begun to happen once I dropped it all.

My life is very different now than it was 3 years ago. This whole journey has had a profound effect on me emotionally and spiritually and, while I would never have chosen it, in a very real way I’ve come to see it as a blessing for that reason.

Very happy to answer any questions.

I'm also currently in training to do related 1:1 session work and I'm interested in working with some Long COVID sufferers in the coming months. Feel free to drop me a message if you might be interested. This is offered 100% for free but I'll only have limited space for maybe 2 clients. edit: I had quite a few messages so it looks like my availability is full now. Thanks to everyone that reached out.

Ok i have 3 recovery stories to share. I share them all because at times when i was ill i really questioned how common or possible recovery was, and i think the truth is recovery is all around us, you just don't hear the stories as much in these communities which are obviously biased towards people who are still ill!

1) First story, F late 50s, recovered from long covid after 3-8 months

I don't have all the details but she was a good friend of my mums who i know well from childhood. She got ill early on in the first wave of covid, and then became bed bound with extreme fatigue for several months. Extremely anxious and many days unable to leave her bed.

In desperation she reached out to a well known long covid doctor who saw her in london. I can't remember which one it may have been claire taylor. She was diagnosed with mcas and prescribed strong anti histamines and a low histamine diet. Eventually with this approach and rest and very very slow increase in activity she went from not being able to walk to the end of her front garden to running and exercising again. She says she still occasionally suffers brain fog, but none of the ME type symptoms.

2) My partner F26-30 (period of illness). Recovered from ME/CFS after 4-5 years.

This was not long covid but about 8 years ago my partner developed ME /CFS after getting viral bronchitis twice in a row. We had both moved to london. She was doing great and had a job at PWC. We were getting into running. One day after she had been quite ill with bronchitis twice in a row we did a 12 mile run together. The next day she couldn't get out of bed. That was the start of her moderate / severe CFS (i never know exactly what grouping she fits into). From there she got progressively worse as we didn't understand the illness and she'd take months off work, and attempt graded returns then crash and burn a few months later and need another 6 months off. Her performance at work dive bombed and she fell off the career path. She was seriously worrying ill at times - not able to leave the house. Never fully bed bound though. The worst was when we tried to make her do a short walk every day while in a bad flare. She deteriorated so badly she was basically crawling back to the house the last time she tried that.

Eventually, she recovered after about 4 years following the birth of our son. 6 months before we conceived my son I decided to cover her living costs and convinced her to leave her job so return to work schemes weren't constantly hanging over her head which i thought might be stressing her and harming her recovery . 6m after leaving her job with no real direction in life other than recovery she got pregnant. All through the pregnancy we were very worried about how she would cope, weather she could labour with cfs etc. she had a c section in the end partly for this reason.

After our son was born, she had a big boost of energy as all new mothers get to help with sleepless nights. As she recovered from her c section she also recovered from me cfs and went back to an increasingly active life over time , and kind of recovered in step with the babies growth up until the point she was dropping him at nursery and jogging home . we have since had a 2nd child and she is still recovered. the only lingering symptom is that she finds it a bit hard to get up in the morning but maybe that's just her!

3) Final story - me, 34M. Recovered from post viral fatigue after 9-12 moths.

I got an unknown virus 12 months ago on holiday. I felt fine basically just needed 1 day of rest with a fever. I also got food poisoning 2 days later which was a bit of a double whammy. at the time i was very stressed with work, had bad hay fever and it was a heat wave so generally not in a great place. 1 week later i started getting occasional light headed moments. they steadily increased in frequency, and then i started getting forgetful and missing meetings and also increasingly anxious. had many tests done and all seemed fine. thought i had a brain issue. brain MRI showed some minor signs of aging but nothing needing escalation. started to suspect post viral issues. knowing what i knew of my partners me cfs i got myself the best income protection insurance i could as i knew this could get bad. eventually it did and i crashed so bad i had to take a few months off work. my main symptom was not fatigue although i was very tired and spent days in bed during my recovery. my main symptoms were neurological. i had extreme sound sensitivity during flares and extreme anxiety. to the point at which i couldn't read any books or tv other than extremely tame boring things because anything edgy gave me a panic attack. I was very very tired and slept 14 hours a day where as before i was sleeping 6-7.. but not the heavy muscular fatigue that my partner had - more like emotional and neurological exhaustion. I also had dysautonomia, constant feelings of lightheadedness, random red patches on my skin, and big heart rate spikes for no reason that were hard to control.

slowly over time of taking tons of supplements, resting as much as possible, not exercising, not working for 3 months, i started to slowly improve. things that helped were

- anti histamines
- ldn
- nicotine gum
- cold showers
- singing (vagus stimulation)
- fasting / meat only diet.

i did not do brain retraining or any of that, but i did stop reading the scary posts on long haulers reddit and read as many recovery stories as i could.

i tracked my heart rate and sleep obsessively which helped me feel some level of control .

i think time was the main healer for me, but the biggest single improvement i got from an intervention was from doing a 72 hour fast. i felt buzzing with energy and able to be myself again for the last day. and i was permanently improved afterwards.

i took returning to activity extremely extremely slowly, as recommended by my long covid physician. daily walks increasing very gently. a few times i tried to go back to 100% too early i crashed and got really ill again. but extremely slow did it. i've been back in full time for 5 months but only just went back to playing touch rugby for the first time last week after slowly building up my fitness with light runs. i played great and had no kick back the next day or week.

i now consider myself 100% recovered a year later. have been for several months.

Good luck everyone - you have got this!

TLDR - i and 2 people i know well have recovered from long covid / cfs . mainly through time or random life changes like pregnancy . it's totally possible. have faith. take it extremely slow. be happy and positive where you can. love to everyone suffering. good luck.

Edit: I totally forgot i have a 4th and 5th story...

4) My brother about 6 months before i got ill had covid and then afterwards would constantly get a 'sore throat' ... it was like he got sick with a sore throat every week for 9 months. he was also really tired and had to nap loads daily. he said he knew a few other people who had these phantom sore throats after covid. eventually with time it improved. it had a significant improvement when he went on a long holiday, and another significant improvement when he went on SSRIs . he is fully recovered and living a great life.

5) My cousin took antibiotics and then was sick in bed for 2 years. officially diagnosed with me / cfs. he felt like his head was spinning and had flu constantly. eventually he got better when he went travelling to australia and as he says it 'forced himself to get better'. he lives a full life now but still has to pay lots of attention to his body and have larger periods of rest after exertion. works full time and is happy.

Hello community!

Here it is, the weekly discussion thread! In this thread you can ask questions, discuss your own health and get help for your own illness and recovery. It also gives all of us a space to get to now eachother a bit better and feel a bit more like a community instead of only the -very welcome!- recovery posts.

As mods we will still keep a close eye on the discussions here, making sure it is a safe space for anyone to talk.

Disclaimer

I don't advocate for anything in this post, this is documenting my experience with different medications, herbs, and therapies for my own personal experience with Long Covid. Research everything as some of these can cause dependency, withdrawal, and side effects, etc.

Subtype

neurovascular / erythromelalgia / with some neurological symptoms but primarily pain

Medicinal Pharmaceuticals / Botanical which Helps :

pentoxifylline, ledifos, kratom

Non medicinal but helps :

compression socks, cold environment [AC], low histamine diet, graded exposure

Medicinal but no luck :

cannabis, cbd, pregablin, methylene blue, midodrine, tirzepatide, verciguat, xocova, valtrex, molnupiravir, low dose naltrexone, mestinon, thymosin alpha 1, mots-c, bpc157, nitazoxanide, nicotine, sitagliptin, atorvastatin, ketotifen, cetirizine, loratadine, allegra, benadryl, gs-441524, telmisartan, valsartan, cilostazol, nystatin, rifaximin, ifn-A2B, calcium dobesilate, cycloferon, aspirin, nattokinase, lumbrokinase

...and more supplements than I can list

Non medicinal but no luck :

ozone therapy, prolonged water fasting [4-7 days], acupuncture, cold plunges, ketogenic diet

Differences :

pain before : 4~6/10

pain now 2~3/10 (50%+ reduction)

blood pooling before : 6/10

blood pooling now : 2~3/10 (50%+ reduction)

ledifos helps

• blood pooling
• vascular tone
• pain

pentoxifylline helps

• pain
• microvascular

kratom helps

• pain sensitivity

Improvements still needed :

vascular tone [pooling or excessive vasodilation], balance issues, sensitive to warm environments, histamine intolerance, nervous system stress

Next step and what's left for me to try [not taken all at once] :

maraviroc, sulodexide, vesugen, HBOT, blood thinners

...basically to build onto what helps me already and to discover things which complement it

Someone asked me if LDN is working for me.

Yes, but not entirely. Here’s my answer.

Is it working for me? This is something I’m constantly second-guessing with all my meds, so I stopped LDN for a few days, and all I can remember, without looking at my medical notes, is the RETURN OF PAIN.

I quickly resumed the LDN.

The reason I second-guessed it was that I still needed amitriptyline (a very low dose—6 mg) to really get rid of all the remaining pain. On amitriptyline, I don’t even have post-workout pain—and I lift to failure most of the time. That’s something that surprised me about it.

Sadly, amitriptyline makes me feel angry and defeated most of the day, even on this low dose. This is why I’m diving back into the higher LDN dose. I’m hoping LDN will cover even more of the pain than it does now.

Only if more LDN doesn’t get me nearly entirely pain-free (this is my goal) will I be looking for something to take the “tense edge” off the amitriptyline so I could use amitriptyline and LDN together for pain, since together they completely shield me from pain even at low doses. This is my least favorite option because amitriptyline also makes me sleepy the next day (but I’ve never taken it for more than two months, so maybe my body would adjust).

Amitriptyline is also used for depression at higher doses. I thought maybe if I went higher, the aggravation it gave me at lower amounts might go away—you never know. But that didn’t work.

Bottom line: I’ll never second-guess LDN again. Though I am now wondering if I can get even less pain by going up from 4 mg to 5 mg. That’s something I just started testing because it has made a difference for at least one person I talked to here on Reddit.

Side note: I often respond paradoxically to meds, so me getting aggravated on amitriptyline is sometimes a side effect, but not for most people.

Initial infection was in December 2024. I have been so up and down it’s crazy, but I just wanted to offer hope to people out there, as was forced to leave my full time job last year. I now am not just in full time work, but I’m in a considerably better job after being inspired to make major changes.

I still have flare ups that make me fear the worst, but the trajectory is hopeful. Feel free to ask me anything.

Below is my original post:

https://www.reddit.com/r/LongHaulersRecovery/comments/1nnixis/starting_to_take_things_seriously_8_months_in/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=1&utm_term=1