Long COVID
Severe → much betterIll 2 years before improving or writingNeeds ongoing treatment
Acute psychosis and bed rest with long COVID, now much better with pacing and testosterone
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
The covid19 that killed me, and caused my serious long covid
In context ↗ - At worst: Severe
I was mostly on bed rest for a year (I was in pretty rough shape) after my 2023 infection
In context ↗ - Now: Much better
found a new normal which is a long way from my old normal, but I'm fighting and gaining ground
In context ↗ - Began after: COVID
The covid19 that killed me, and caused my serious long covid, was a 2023 infection I picked up in Canada on my way back to Spain, likely omicron.
In context ↗
Read from 38 of their posts and comments; links to the 18 this page draws on
Summary
He got long COVID from a December 2023 infection in Canada: AFIB with an 11-second pause, then acute psychosis and two weeks in a psychiatric ward, then a year mostly on bed rest and eight months off work. A 90-day antiviral and steroid protocol lifted him near normal for a week before fading; tofacitinib made him worse. Testosterone, thymosin alpha 1 and pacing brought gradual gains; by 2026 he walked 7,000 steps most days but still crashed.
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What they tried
What they credit
dexamethasone· Helped a lot · wore offTRT/Testosterone· Helped a lot · mainpaxlovid· Helped · wore offthymosin alpha 1· Helped · mainKLOW (TB-500, BPC-157, GHK-Cu, KPV)· HelpedKLOW (TB-500, BPC-157, GHK-Cu, KPV)· HelpedKLOW (TB-500, BPC-157, GHK-Cu, KPV)· HelpedKLOW (TB-500, BPC-157, GHK-Cu, KPV)· HelpedKLOW (TB-500, BPC-157, GHK-Cu, KPV)· Helped
Also tried
SS-31· Helpedold school anti histamine, generation 1· Helpedquviviq· Helpedpacing· Helpedpushing myself from time to time· Helpedmaraviroc· No changeTruvada· No changeretatrutide· No changeTofacitinib· WorseShingrix vaccine· WorseBaricitinib· WorseHCQ· Not saidprednisone· Not saidSofosbuvir/daclatasvir· Not saidcolchicine· Not saidvaltrex· Not saidthyroid hormones· Not saidAntipsychotics (unspecified)· Not said
Their words about each treatment
- HCQ · Not said
I was briefly treated with HCQ by the immunologist, but it didn't do much to the move the needle
In context ↗ - prednisone · Not said
I was on prednisone and HCQ previously and they didn't nudge my IgG down at all either.
In context ↗ - dexamethasone · Helped a lot
Dexamethasone - definitely felt better while on this, but only did a two week run
In context ↗ - paxlovid · Helped
The combination of the paxlovid and the dexamethasone brought me almost up to 100%
In context ↗ - Sofosbuvir/daclatasvir · Not said
The paxlovid is hard on the liver, so I'm doing the Sofosbuvir/daclatasvir and half dose until it ends.
In context ↗ - maraviroc · No change
Truvada/Maraviroc - no real change that I could tell
In context ↗ - Truvada · No change
Lots of people had success with Truvada, but it didn't do much for me.
In context ↗ - Tofacitinib · Worse
I started the jak stat afterwards, which progressively made me feel worse day by day over the 10 days I took it.
In context ↗ - colchicine · Not said
I'm adding colchicine as well to help dampen that.
In context ↗ - Shingrix vaccine · Worse
I vaccinated myself last week against shingles and the very next day had a flare up of those same shocks.
In context ↗ - valtrex · Not said
I also added valtrex to keep the VZV at bay as I thought that would be a better idea.
In context ↗ - thymosin alpha 1 · Helped
Thymosin alpha 1 - this works and is probably what's caused my absolute lymphocyte count to go up. I take this three times a week, 1.6mg per injection
In context ↗ - SS-31 · Helped
SS-31 - this seems to help, at least for a few hours after taking it.
In context ↗ - TRT/Testosterone · Helped a lot
TRT/Testosterone - this made a big difference in my brain fog and overall well being.
In context ↗ - thyroid hormones · Not said
I'm now on thyroid hormones and testosterone, and have been using retatrutide to lose weight.
In context ↗ - retatrutide · No change
Can't say it's helped with my LC, but I'm losing some weight which is good.
In context ↗ - Baricitinib · Worse
Had to stop. Was making me feel worse.
In context ↗ - KLOW (TB-500, BPC-157, GHK-Cu, KPV) · Helped
I take TB-500 and BPC-157 via a peptide combination called KLOW ... I'm not cured by these, but I do believe they all help.
In context ↗ - old school anti histamine, generation 1 · Helped
Try an old school anti histamine, generation 1 (the drowsy ones). Those helped me a lot.
In context ↗ - quviviq · Helped
it does make it easier to get back to sleep if you wake up
In context ↗ - pacing · Helped
I have to pace myself lots
In context ↗ - pushing myself from time to time · Helped
I found I did worse when I didn't do anything
In context ↗ - Antipsychotics (unspecified) · Not said
I also had akathisia when they put me on anti-psychotics, it wasn't fun.
In context ↗
Approaches: Antivirals · Other drugs and medicines · Peptides · Sex hormones
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| December 2023 | COVID-19 infection caught in Canada that triggered long COVIDThe covid19 that killed me, and caused my serious long covid, was a 2023 infection I picked up in Canada on my way back to Spain, likely omicron.In context ↗ | Mild | |
| early 2024 | acute psychosis, involuntary psychiatric admission, profound illness, bed restTwo days later the cops found me wandering aimlessly around the city in a state of acute psychosisIn context ↗ | Severe | |
| mid-2024 | well enough after eight months off work to return to SpainI had to take eight months off work, still suffering with flu like symptoms, twitches, frequency crashes etc. I eventually felt good enough to come back to Spain, where the medical system moves a little faster.In context ↗ | Moderate | |
| August 2025 | felt almost like his old self in the first week of the antiviral and steroid protocolThe combination of the paxlovid and the dexamethasone brought me almost up to 100%.In context ↗ | Near normal | Paxlovid / nirmatrelvir |
| September 2025 | benefit faded and tofacitinib made him progressively worse; slowly regained baselineI started the jak stat afterwards, which progressively made me feel worse day by day over the 10 days I took it.In context ↗ | Mild | |
| January 2026 | new normal with testosterone, thymosin alpha 1 and peptides; small monthly gainsI've lost most of that weight and found a new normal which is a long way from my old normal, but I'm fighting and gaining ground.In context ↗ | Mild | Testosterone |
| March 2026 | stopped baricitinib because it was making him feel worseHad to stop. Was making me feel worse.In context ↗ | Mild | |
| May 2026 | walking daily and pacing, still crashing on bad daysI can do 7k most days. I just pace myself and stop when I don’t feel it.In context ↗ | Mild |
Adverse events
- Vaccines used as treatment (BCG, staph toxoid, JE)“I vaccinated myself last week against shingles and the very next day had a flare up of those same shocks.” In context ↗ Nerve pain
- Tofacitinib (Xeljanz)“I started the jak stat afterwards, which progressively made me feel worse day by day over the 10 days I took it.” In context ↗ Made symptoms worse
- Tofacitinib (Xeljanz), Baricitinib (Olumiant)“I even had one day where I woke up and my brain felt drunk, like I had had too much to drink.” In context ↗ Side effects
- Baricitinib (Olumiant)“i'm on day 5 and feeling a bit yucky.” In context ↗ Side effects
- Baricitinib (Olumiant)“Had to stop. Was making me feel worse.” In context ↗ Made symptoms worse
- Antipsychotics (unspecified)“I also had akathisia when they put me on anti-psychotics, it wasn't fun.” In context ↗ Side effects
- Daridorexant (Quviviq)“I do think it has a bit of a hangover effect.” In context ↗ Side effects
Symptoms mentioned
Brain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
I have horrible insomnia, brain fog, frequent PEM crashes
In context ↗ - Brain fog
Yah I felt about 50% less brain fog going up to 700.
In context ↗ - Sleep problems
I have horrible insomnia
In context ↗ - Tinnitus
my tinnitus completely disappeared
In context ↗ - Flu-like symptoms
still suffering with flu like symptoms
In context ↗ - Heart symptoms & palpitations
I had runs of six minutes of AFIB, and one 11 second pause where my heart just stopped
In context ↗ - POTS & dysautonomia
I started having heart issues, tinnitus, and pre-syncope
In context ↗ - Pain & fibromyalgia
All my muscles ache and I just feel like I could lie in bed all day.
In context ↗ - Neuropathy & tingling
I would get eye shocks and facial nerve shocks
In context ↗ - Temperature regulation
I was having large temperature fluctuations - randomly sweating, feeling cold.
In context ↗ - Gut problems
muscle twitches, sinus pressure, and severe nausea
In context ↗
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