Long COVID
Severe → no benefitIll for 4.5 years
Bedbound with long COVID since 2023, slowly worsening, no treatment helped
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 4.5 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
Im a M23 with Long Covid since january 2022. Bedbound since 2023.
In context ↗ - At worst: Severe
Bedbound since 2023. ... not able to sit up long
In context ↗ - Now: No benefit
Throughout the 3 years it slightly getting worse.
In context ↗
Read from 32 of their posts and comments; links to the 18 this page draws on
Summary
A man in the Netherlands developed long COVID/ME/CFS after a COVID infection in January 2022 and has been bedbound since 2023 with 24/7 fatigue, possible PEM and light and sound sensitivity, slowly worsening. SSRIs, LDN, LDA, Valtrex, Celebrex, nattokinase, CoQ10, NADH and supplements failed to help; Celebrex caused stomach issues and one treatment only raised his heart rate. Tests suggested adrenal insufficiency; he had not started hydrocortisone.
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What they tried
Also tried
melatonin· Helpedeye drops· Helpedeye gel· Helpedcitalopram· No changeanti histamines (cetirizine)· No changenattokinase· No changeq10· No changeUbiqinol· No changed-ribose· No changePQQ· No changeNADH· No changeNAC· No changeLDN· No changeLDA· No changevaltrex· No changecelebrex· No changeDHEA· No changestopping all activities· No changefluvoxamine· Worsebeclometasone inhaler· Worse
Their words about each treatment
- citalopram · No change
I started with 10 to 20 mg citalopram. That didnt work
In context ↗ - fluvoxamine · Worse
Fluvoxamine 100 mg didnt work for me ... Maybe even slightly worse
In context ↗ - anti histamines (cetirizine) · No change
i dont benefit from anti histamines (cetirizine)
In context ↗ - nattokinase · No change
i dont benefit from nattokinase (microclotting)
In context ↗ - q10 · No change
Also q10 en d-ribose etc doesnt work
In context ↗ - Ubiqinol · No change
PQQ, NADH, COQ10, Ubiqinol didnt do anything
In context ↗ - NAC · No change
I tried NAC for 2 months, no changes
In context ↗ - melatonin · Helped
Sometimes i take 0.2 mg if i need to be early for the doctor and then i fall asleep at 21:00.
In context ↗ - LDN · No change
LDN slik ik nu maar voel daar geen verbetering door
In context ↗ - LDA · No change
didnt help but didnt make me worse. Only higher hr
In context ↗ - valtrex · No change
took valtrex for six months. Didnt help. 3 grams
In context ↗ - celebrex · No change
didnt work for me, celebrex caused stomach issues also
In context ↗ - DHEA · No change
I used some american brand, but didnt help back months ago.
In context ↗ - beclometasone inhaler · Worse
I think i also got issues from beclometasone inhaler. Stretch marks low cortisol, higher acth, failed synacthentedt
In context ↗ - stopping all activities · No change
I stopped all activities for months. Only watching netflix in bed and the fatigue doesnt go away.
In context ↗ - eye drops · Helped
And eye drops? For me it helps a little
In context ↗ - eye gel · Helped
maybe you need eye gel instead of drops. Worked for me better.
In context ↗
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. The chart starts 18 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2023 | became bedbound and has stayed bedboundBedbound since 2023.In context ↗ | Severe |
| 2025-12-30 | still bedbound, no treatment has helped | Severe |
Adverse events
- Fluvoxamine (Luvox)“Fluvoxamine 100 mg didnt work for me😢 Maybe even slightly worse” In context ↗ Made symptoms worse
- Celecoxib (Celebrex)“didnt work for me, celebrex caused stomach issues also” In context ↗ Gut side effects
- “I think i also got issues from beclometasone inhaler. Stretch marks low cortisol, higher acth, failed synacthentedt” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“didnt help but didnt make me worse. Only higher hr” In context ↗ Heart rhythm problems
- Lubricating eye gels and ointments“The eye gel makes my vision blurry, so it forces me to go to sleep in the evening.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsLight & noise sensitivityPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
some kind of PEM or exercise intolerance
In context ↗ - Brain fog
Still got heavy fatigue, cognitive pem
In context ↗ - Sleep problems
little deep sleep (apple watch) but steady 10 hrs
In context ↗ - Light & noise sensitivity
moderate sound and light sensitive
In context ↗ - Breathlessness
a little shortness of breath
In context ↗ - POTS & dysautonomia
tremors, dysautonomia etc
In context ↗ - Vision problems
chronic eye fatigue, purple eyebags
In context ↗ - Gut problems
celebrex caused stomach issues also
In context ↗