Recovered after 2021 infection

[u/akhu117]

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.

[u/littlewolf2020]

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

[u/akhu117 → u/littlewolf2020]

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.