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ME/CFS Very severe → no benefitIll for 2 years

Bedbound with ME/CFS after COVID, still at Bell 20 or below; Acyclovir worsened fatigue

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill for
2 years
Last post
Nov 2025
In their words
  • Condition: ME/CFSMy second Covid infection however gave me severe ME/CFS. In context ↗
  • At worst: Very severelying down 22 hours of the day, only getting up to eat and go to the toilet In context ↗
  • Now: No benefitI'm overall a lot worse off than before taking it. This effect seems to be permanent for me. In context ↗
  • Began after: COVIDMy second Covid infection however gave me severe ME/CFS
Read from 26 of their posts and comments; links to the 16 this page draws on

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Summary

Lagoon 54886 developed ME/CFS-type long COVID after a second COVID infection in October 2023, initially mild-moderate, then deteriorated fast from Christmas 2023 and was bedbound. Two doses of Lexapro caused a severe crash; mirtazapine improved their sleep and helped them out of it. In 2024 they were 99% bedbound; by 2025 they were still at about Bell 20 or below, and said Acyclovir had permanently worsened their fatigue.

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What they tried

Their words about each treatment
  • budesonide (asthma inhaler) · Not saidIt's a common asthma medication, I've been using it since I was a child. In context ↗
  • corticosteroids · Not saidI got corticosteroids during acute infection and now have LC/ME. In context ↗
  • pacing and resting · No changeResting and pacing but keep getting worse ... I think I've done all the right things, but I keep deteriorating at a scary speed In context ↗
  • meditation and yoga nidra · Not saidtrying to balance that with meditation, radical rest breaks and yoga nidra In context ↗
  • radical rest breaks · Not saidMy aim is 8 of such rest breaks for 15 minutes each day. In context ↗
  • Lexapro · WorseI started Lexapro on Friday and unfortunately had to stop 2 days later because the side effects were truly unbearable for me In context ↗
  • zopiclone · HelpedSo I took a zopiclone last evening - eased my symptoms, calmed me down. In context ↗
  • melatonin · HelpedI fall asleep okay-ish on Melatonin, but constantly wake up after an hour In context ↗
  • Ativan · Helped a lotlast night I took an Ativan - 8,5 hours of uninterrupted, refreshing sleep ... Benzos seem to help, but I don't want to take it for more than 3 days
  • Mirtazapine · Helpedfor me Mirtazapin is helping me out of the crash because it made me sleep a lot better In context ↗
  • Acyclovir · Much worseAcyclovir worsened my fatigue very significantly and I'm overall a lot worse off than before taking it. This effect seems to be permanent for me. In context ↗

Their path

Very severeSevereModerateMildNear normalRecoveredonset6 mo12 mo18 mo2 y

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
WhenWhat happenedWhere they wereAfter
October 2023ME/CFS-type long COVID after second COVID infection; mild-moderate at first, off work from NovemberI have the CFS type Long Covid (since October last year) ... Until Christmas, I was able to cook my own meals, go for a slow 20 minute walk and meet friends at my home for a few hours, with mostly mild symptoms and lots of rest In context ↗Mild
Christmas 2023fast deterioration; moved in with mother, lying down 22 hours a daySince Christmas, it's been going downhill FAST. ... lying down 22 hours of the day, only getting up to eat and go to the toilet In context ↗Severe
February 2024crashed after 2 doses of the SSRI Lexapro, fully bedboundI crashed big time after 2 doses of an SSRI, which I reacted really terribly too. Haven't gotten out of this crash yet (fully bedbound) In context ↗Very severe
March 2024coming out of the crash on Mirtazapine, sleeping better but still 99% bedboundMirtazapin is helping me out of the crash because it made me sleep a lot better. I'm 99% bedbound coming out of this crash ... Still Bell 5Very severe
July 2024week of horrible new-type symptoms without clear trigger, 99% bedboundI've been feeling absolutely horrible (in waves) for a week now, without a clear trigger ... I'm 99% bedbound In context ↗Very severe
April 2025Acyclovir worsened fatigue significantly and permanentlyAcyclovir worsened my fatigue very significantly and I'm overall a lot worse off than before taking it. This effect seems to be permanent for me. In context ↗SevereAcyclovir
November 2025still severe ME/CFS, about Bell 20 or belowMy second Covid infection however gave me severe ME/CFS ... Especially when already at Bell 20 or belowSevere

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaisewalking caused minor PEM, longer conversations and cooking exhausted me In context ↗
  • Sleep problemsI'm also dealing with severe insomnia, and not even sleeping pills work that great. In context ↗
  • Light & noise sensitivitylight sensitivity is there, but barely noticeable ... When my noise sensitivity isn't that bad In context ↗
  • Flu-like symptomsThis morning I actually feel decent! No flu symptoms, no tired but wired feeling, reduced noise sensitivity. In context ↗
  • Anxiety & low moodI'm still in the very early phases of this disease and grieving and panicking In context ↗

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