Long COVID with PEM, fatigue and brain fog, now near normal after ketotifen and LDN
- Condition
- Long COVID
- At worst
- Not stated
- Ill before improving or writing
- 2 years
- Last post
- Mar 2025
In their words
- Condition: Long COVID
Longhauling since Feb 2023 - mostly PEM, fatigue, brain fog, anxiety, exaggerated fight/flight, disordered sleep.
In context ↗ - Now: Near normal
Still experiencing non-refreshing sleep, some brain fog, and sometimes PEM
In context ↗ - Began after: COVID
my 2nd covid infection which gave me LC
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Oak 72757 has had long COVID since February 2023, with PEM, fatigue, brain fog, anxiety and poor sleep. By early 2024 they were mostly recovered: after a good night's sleep they could have a relatively normal day and exercise, though sleep problems, brain fog and occasional PEM remained. Ketotifen helped their sleep and they also took low-dose naltrexone; monolaurin didn't clear their reactivated EBV, and a third COVID vaccine caused problems.
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What they tried
Also tried
Their words about each treatment
- iron supplements · Helped
recently I got it to 40 (with iron supplements) but stopped taking regularly and back down to 18
In context ↗ - Simply Heme · Helped
I have found Simply Heme helpful.
In context ↗ - various supplements · Not said
On various supplements and an antiviral, though I haven't tried LDN or nicotine patches.
In context ↗ - avoid gluten · Not said
I still avoid gluten
In context ↗ - low histamine diet · Not said
lately trying to eat low histamine to see if it will improve my sleep
In context ↗ - Ketotifen · Helped
Ketotifen helped with my insomnia + night wakings
In context ↗ - LDN · Helped
Evening. Helps with my sleep as far as I can tell.
In context ↗ - nicotine patches · Not said
I've not been able to sleep with them so I just wear them during the day.
In context ↗ - monolaurin · No change
I've tried monolaurin for periods at a time for reactivated EBV and still have reactivated EBV - didn't have any apparent side effects for me
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 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| Feb 2023 | long COVID after second COVID infectionLonghauling since Feb 2023 - mostly PEM, fatigue, brain fog, anxiety, exaggerated fight/flight, disordered sleep.In context ↗ | Not stated | |
| Feb 2024 | mostly recovered, could have a relatively normal day and exerciseStill experiencing non-refreshing sleep, some brain fog, and sometimes PEM, but otherwise \*if\* I get a decent night of sleep, I can have a relatively normal day. I can generally exercise.In context ↗ | Near normal | |
| 2025-02-01 | ketotifen and LDN helping sleepKetotifen helped with my insomnia + night wakingsIn context ↗ | Near normal | Ketotifen (Zaditen) |
Adverse events
- Nicotine patches“I've not been able to sleep with them so I just wear them during the day.” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Sleep problems
Still experiencing non-refreshing sleep
In context ↗ - Anxiety & low mood
anxiety, exaggerated fight/flight
In context ↗