Unable to get out of bed with long COVID, improved on rest and LDN, then relapsed
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Oct 2026
In their words
- At worst: Severe
The first few months I really couldn’t get out of bed
In context ↗ - Now: Relapsed
Literally 3 days ago, I was celebrating how much better my POTS symptoms were. Today, I woke up with my heart rate back to 130-140. I feel terrible again
In context ↗ - Began after: COVID
I was prescribed doxycycline when I initially got sick with COVID & pneumonia.
Read from 13 of their posts and comments; links to the 11 this page draws on
Summary
A college student who developed long COVID in October 2025, at first unable to get out of bed and barely able to hold up their head. Rest, medical leave and low-dose naltrexone brought large gains; by April 2026 they could ride a stationary bike for 30 minutes. Acupuncture in August 2026 flared symptoms badly, and a POTS relapse in September pushed heart rate back to 130-140.
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What they tried
Their words about each treatment
- doxycycline · No change
I still ended up with Long COVID and didn’t feel any better while taking it unfortunately.
In context ↗ - pacing (break from the gym, short walks) · Helped
Coping with the fact that I needed to take a break from the gym was hard, but it has helped my progress significantly.
In context ↗ - LDN · Helped a lot
The only change I made was taking LDN. Not cured, but much much better.
In context ↗ - acupuncture · Much worse
I just had acupuncture yesterday and my symptoms are 1,000,000 times worse.
In context ↗ - propanolol · Worse
I’ve been feeling worse on it for the first few days.
In context ↗ - b12 · Worse
I’ve been taking b12 and feeling worse
In context ↗
Approaches: Pacing
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 1 month 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 | After |
|---|---|---|---|
| first few months, late 2025 | lowest point, in bed and barely able to hold up their headThe first few months I really couldn’t get out of bedIn context ↗ | Severe | |
| 2026-01-17 | about 20% better than the worst, still not functionalI would say I’ve improved around 20% since the worst of it.In context ↗ | Moderate | |
| 2026-02-11 | stopped gym work and walked only in short boutsI walk in very short increments (no longer than 5 minutes at a time) just to keep my blood flowing.In context ↗ | Mild | Pacing and the energy envelope |
| 2026-04-13 | could ride a stationary bike 30+ minutes after LDNI couldn’t sit up straight for more than ten minutes at first. Now I can ride my stationary bike for 30+minutes.In context ↗ | Mild | Low-dose naltrexone |
| 2026-08-12 | severe flare after acupuncture, felt like the first monthI just had acupuncture yesterday and my symptoms are 1,000,000 times worse.In context ↗ | Severe | |
| 2026-09-29 | POTS relapse, heart rate back to 130-140Today, I woke up with my heart rate back to 130-140. I feel terrible again, but I don’t believe I was reinfected.In context ↗ | Moderate | |
| 2026-10-01 | still feeling worse while taking B12I’ve been taking b12 and feeling worseIn context ↗ | Moderate |
Adverse events
- Acupuncture“I just had acupuncture yesterday and my symptoms are 1,000,000 times worse. ... I am extremely dizzy and short of breath.” In context ↗ Made symptoms worse
- Propranolol (Inderal)“I’ve been feeling worse on it for the first few days.” In context ↗ Made symptoms worse
- Vitamin B12“I’ve been taking b12 and feeling worse” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I do have issues with head pressure on days where I crash.
In context ↗ - Brain fog
my symptoms were making it impossible to sit in class and retain information
In context ↗ - POTS & dysautonomia
Today, I woke up with my heart rate back to 130-140.
In context ↗ - Breathlessness
I am extremely dizzy and short of breath.
In context ↗ - Heart symptoms & palpitations
the most concerning are chest pains, dizziness, exercise intolerance, tremors, and some vision issues (blurriness/ light sensitivity)
In context ↗ - Muscle weakness
I’m still not really functional due to the fatigue and weakness.
In context ↗ - Vision problems
My ophthalmologist says I have perfect vision, but everything was so blurry.
In context ↗ - Light & noise sensitivity
some vision issues (blurriness/ light sensitivity)
In context ↗
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