r/LongHaulersRecovery

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.

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.

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.

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.

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.

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

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.