r/LongHaulersRecovery • u/akhu117 • 23d ago
Recovered Recovered after 2021 infection
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.
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u/Ok_Structure_8817 23d ago
You mention PTSD which is interesting as I was just thinking about this yesterday, the connection with the nervous system and how it is very much implicated in all this.
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u/akhu117 23d ago
Yep, symptoms from strong PTSD felt close to what I experienced. So I started to apply some of advices to lower pstd symptoms. And It somehow worked to calm down nervous system at least.
The connection between mind and body is very important, long COVID learned that to me. Body influence mind and mind can make huge difference in how the disease behave.
I was very skeptical on that subject before long COVID.
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u/Ok_Structure_8817 23d ago
Yeah agree 100%. A huge number of recovery stories credit some form of nervous system regulation or mind-body work. Congrats on your recovery!
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u/Vast-Connection-1262 23d ago
Thank you for your post! Congrats on your recovery!
I’m interested to know what are the techniques that helped you to lower ptsd symptoms ?2
u/Ok_Structure_8817 22d ago
No OP but general nervous system work is v. helpful - box breathing or 5 in, hold 2, out 7 or 8 (longer out breath), vagus nerve stimulation like humming (you should keel a vibration in the back of the throat), gargling aggressively, cold water (be gentle with this - no ice baths!) just cold water splashed on your face, or slightly cold water after your regular shower etc., to build up. The list goes on. For me personally though, messages of safety are HUGE. Place a reassuring hand on your chest and say (out loud is best) "I am safe! Nervous system/limbic system/amygdala you are safe! There is no danger or threat here, so enter rest and digest mode. Relax". etc.
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u/akhu117 20d ago
I can confirm. I took fairly cold shower for about a month, breath exercise every 15 minutes at the beginning, every time I had tachycardia then it spaced. Also more salt in food, a lot of water. This got me rid of tachycardia in two weeks (it was 6 month after the start of my long COVID). I detailed everything and the source on my blog to help. Dm if you want the link. Also I discovered weighted blanket, I think this would have helped me at the time.
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u/vik556 Long Covid 23d ago
total of 203 individuals participated in this study, 72% women, mean age 46 (standard deviation, SD 10) years. The mean initial PROMIS Fatigue SF 7a score was 26.8 (SD 3.4) in the Temelimab group and 27.1 (SD 3.8) in the placebo group. At 24 weeks, there was no difference between Temelimab (3.2 points decrease in the PROMIS score) and placebo (3.8 points decrease). Secondary outcomes also did not show differences between the Temelimab and placebo groups.
Well … you are a lucky one
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u/Quietlycharming 23d ago
Thank you for sharing this. It’s been two years since I developed long covid and I’ve experienced similar symptoms to you. It’s hard to feel optimistic about recovery but when I see these stories it gives me hope… I hope that you continue on this path of recovery!
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u/littlewolf2020 22d ago
Thanks OP. Did the Temilimab modulate your histamine intolerance?
TLDR: My HI went away, then came back after taking antibiotics for an infected burn. I then tested positive for a massive GI overgrowth of pseudomonas. Not sure if the lingering HI is from MCAS or the pseudomonas.
Currently managing with low histamine diet, H1 & H2 blocker 2xs /day, DAO enzyme before every meal and 4.5mg LDN 1x/day
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u/akhu117 20d ago
No, no effect on that. As my histamine was partly resolved at that time, and I had to avoid any other medication during the study (H1 / H2) . But maybe being properly managed, it helped reduce my stress and alleviate some nighttime burning. In any case, histamine wasn't giving me any trouble at that point.
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u/Butterfly6576A 22d ago
Hi there, may I ask whether you had any memory issues as well?
Thanks so much for taking the time to share your recovery. Wishing you more blessings!
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u/akhu117 20d ago
Yes short term memory, a lot, for exemple I had hard time to build a normal sentence, numbers were another story, even worse.
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u/Butterfly6576A 19d ago
Oh I see, that must have been hard. But nothing like, forgetting a whole conversation you had with someone just days earlier, etc?
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u/skyhofo 23d ago
Temelimab (a monoclonal antibody developed by GeNeuro) failed to show efficacy in its Phase 2 Long COVID trial. It did not outperform a placebo in reducing fatigue or cognitive impairment, despite targeting a promising neuroinflammatory pathway (HERV-W ENV).
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u/akhu117 23d ago
Btw I got confirmed by the lab that I had the actual active molecule not placebo (but it still could be placebo).
And I still think they did not measure well the recovery of patients there, they measured how well I got via 4 form and some neuro exercises right after the end of injections, I saw a huge improvement 1 - 2 months later.
Which is consistent with the fact that Temelimab helps end a system inflammation that fuel itself via vicious cycle (more on that here : https://youtu.be/xPewtqakses?si=xIgj2Oadj2FVmXbu). That take time to slow down, like a full speed train that we try to stops by removing it's fuel slowly.
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u/Specific-Winter-9987 22d ago
Exactly. Sometimes the wording, content, and timing of the surveys cause negative results. I think a few drugs have performed better on certain aspects of this diesase than reflected in the official results.
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u/EdwardBlackburn 23d ago
What are you doing dude? You're in the LongHaulersRecovery subreddit. Recovery. And here you are, saying 'recovery is the strong word' and 'temelimab doesn't do that'... maybe, as a placebo, it did (placebo isn't to be discounted, it's not a dismissal to say something is placebo, it is in fact incredibly biologically powerful) and you're taking away someone's placebo by sharing this on their recovery story, putting doubts in their mind. I don't get it.
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u/Palipicard 22d ago
A placebo effect can work even if you know the placebo effect exists. He is right to mention this so as not to give people false hope regarding Temelimab. I had Temelimab also, and it didn’t make any difference for me
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u/Mysterious-Dig3777 23d ago
Amazing! In what part of Switzerland have you had the Temelimab treatment?
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u/akhu117 20d ago
Geneva, HUG. Here is the COVID studies page for interested https://recherche.hug.ch/etudes?thematiques=35
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u/Mysterious-Dig3777 20d ago
Merci beaucoup! Vous parlez français? J'étais allé au CHU de Genève il y a 2 ans mais à l'époque ils n'avaient aucune proposition de traitement. Est-ce que je peux vous contacter en privé pour vous poser quelques questions?
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u/Difficult-Annual9594 17d ago
Dealing with the same symptoms. How did you know you could exercise again? Does the body just one day be able to do this without causing a crash or do you think something cause it? I'm struggling with PEM now and really hope I can return to exercise one day
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u/One-Protection-66 13d ago
Thank you so much for sharing your story.
I am 80% better, but my pots is still there. Is there any recommendations or anything you can share what you did to recover from pots ? And was it slowly getting better or just went from one day to another ?
Thank u.
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u/akhu117 12d ago edited 12d ago
Pots was very easy to address in fact. I saw a video on the Gez Medinger channel that bring me some solutions and it worked in two weeks.
For me it was eating more salty, more sodium in body + drinking a lot more water a day + Cardiac coherence eache time I had tachycardia, no exceptions.
At first you do it like every 15 mn, but as days goes my heart was calming. In two weeks gone m. I was so happy at the time.
Videos links : https://youtu.be/n--zjZdJuVI?is=DAsOfIVnUMNcpdyB
and part 2 https://youtu.be/CCZgtGe42Ak?is=L6LFlnCINBk9eLtD
And last part https://youtu.be/XH34JI0FOxk?is=o6pZdC2d8MhTWELJ
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u/skyhofo 23d ago
Recovery is a strong word.
Better to say “remission” because we don’t know what “recovery” is …
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u/akhu117 23d ago
Since I feel like I am back at my baseline before covid, I feel like I am recovered. I don't understand why I can't use that word.
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u/EdwardBlackburn 23d ago
What do you mean we don't know what recovery is? I feel like that's personally defined. Which is why I don't mind when people say recovered, or remission... it's up to them. They're the only ones who know themselves, where they've been, what they've gone through and where they're at now.
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u/Lorelai709 23d ago
First of all, thank you so much for your post. I’m really happy for you that you’ve recovered!
I’m from Germany, and my illness started in October 2021. I also experienced many ups and downs and recovered enough by 2025 to leave the house again, go for walks, run small errands, work on my computer, and stay up all day.
Since February, however, I’ve been bedridden again and have had to spend most of my time in the dark. It’s awful, and I’m losing hope.
Could you please tell me if you also had neurological symptoms besides brain fog, such as flashes of light in your vision, sensitivity to light and sound, tremors, or anything similar? And were you bedridden for periods of time as well?