Long COVID with severe fatigue and PEM, now 85% back after thiamine and ganglion blocks
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3.5 years
- Last post
- May 2025
In their words
- Condition: Long COVID
I'm worried that I got over my LC but I also have this permanent neurological condition.
In context ↗ - At worst: Moderate
I had severe fatigue with PEM starting around a year ago, peaking last winter.
In context ↗ - Now: Much better
I am doing better, maybe 85% of what I was but I've grown to be okay with that.
In context ↗ - Began after: COVID
I'm worried that I got over my LC but I also have this permanent neurological condition.
In context ↗
Read from 17 of their posts and comments; links to the 11 this page draws on
Summary
A 22-year-old man developed long COVID in 2021 with severe fatigue and PEM, and later sudden daytime sleepiness; he could barely keep up with two classes. Rest, beta blockers and a week of high-dose thiamine (1500 mg daily) raised his energy baseline; bilateral stellate ganglion blocks added smaller gains. He was back to full-time study in 2022 and about 85% of his former self by 2025, still troubled by sudden sleepiness.
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What they tried
What they credit
Also tried
Their words about each treatment
- rest · Helped
rest and beta blockers being the most effective until recently
In context ↗ - thiamine · Helped a lot
I've noticed significant improvement in energy baseline (no significant crashes) while engaging in "normal" levels of activity.
In context ↗ - Nicotine (gum or lozenge) · Helped
Nicotine (gum or lozenge) and alpha-GPC seem to improve cognition in the short term for me.
In context ↗ - Turkesterone · Helped
Turkesterone (500mg) helps me recover from mild exertion.
In context ↗ - fasting · Helped
I have noticed better mental clarity and a wide range of other improvements after doing them.
In context ↗ - bilateral SGB · Helped
I have also tried bilateral SGB, which was moderately helpful.
In context ↗ - optimizing my sleep-wake cycle · Helped
Currently the biggest thing for me is optimizing my sleep-wake cycle and letting myself rest.
In context ↗
Approaches: Beta-blockers · Diet · Radical rest · Supplements
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 5 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 |
|---|---|---|---|
| 2021 | post-viral symptoms beganhad been experiencing post-viral symptoms for about 8 monthsIn context ↗ | Not stated | |
| winter 2021-22 | fatigue peaked with PEMI had severe fatigue with PEM starting around a year ago, peaking last winter.In context ↗ | Moderate | |
| spring 2022 | dramatic improvement in months 7-8actually seeing dramatic improvement months 7-8In context ↗ | Mild | |
| 2022-05-04 | relapse after spinal fusionAbout a week post-op, I began experienced a significant relapse in symptoms, especially fatigue.In context ↗ | Moderate | |
| 2022-06-01 | daytime sleepiness became milderIt has gotten milder and evolved, though I wouldn't say it's completely gone. I saw notable improvement a couple weeks after my initial post.In context ↗ | Mild | |
| 2022-08-05 | energy baseline rose on high-dose thiamineI've noticed significant improvement in energy baseline (no significant crashes)In context ↗ | Mild | Thiamine / benfotiamine |
| 2022-09-23 | rated himself 70% recovered14 months, 70% recovered.In context ↗ | Mild | |
| 2022-10-12 | back to full-time studynow I am back to full time and doing pretty wellIn context ↗ | Mild | |
| 2022-10-22 | better mental clarity after long fastsI have noticed better mental clarity and a wide range of other improvements after doing them.In context ↗ | Mild | Extended water fasting (3+ days) |
| 2024-11-18 | life manageable, long COVID no longer main concernmy life is manageable now and LC is not my greatest concernIn context ↗ | Mild | |
| 2025-05-12 | about 85% of former selfI am doing better, maybe 85% of what I was but I've grown to be okay with that.In context ↗ | Mild |
Adverse events
- “About a week post-op, I began experienced a significant relapse in symptoms, especially fatigue.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I had severe fatigue with PEM
In context ↗ - Sleep problems
My main symptoms are sudden bouts of sleepiness
In context ↗ - POTS & dysautonomia
inability to stay standing for a long period of time
In context ↗ - Brain fog
Nicotine (gum or lozenge) and alpha-GPC seem to improve cognition in the short term for me.
In context ↗ - Anxiety & low mood
I've strongly felt like that multiple times over the last 3 years.
In context ↗
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