Long COVID
Severe → no benefit
Bedbound with long COVID, remained bedbound; no improvement from naltrexone or mestinon
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Aug 2026
In their words
- At worst: Severe
They were the only clinic willing to do telehealth, as I’m completely bedbound.
In context ↗ - Now: No benefit
I’ve not actually implemented any solutions that have worked.
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
A person in Australia developed long COVID about six months after an MS diagnosis at 18; they became bedbound. Low-dose naltrexone, trialled for most of a year (held at 4.5 mg; told to ramp to 12 mg regular naltrexone), brought no improvement and seemed to worsen their fatigue, paralysis and hyperalgesia. Mestinon did nothing after a couple of weeks; only oxycodone gave a few hours of stability. They remained bedbound.
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What they tried
Also tried
oxy· Helpedanti parasitics· No changeMestinon· No changeLDN· Worsewheelchair· Worseworkouts / pushing to fatigue· Much worsepainkillers (opioid and non-opioid)· Not saidLyrica· Not said
Their words about each treatment
- LDN · Worse
We spent most of a year adjusting the dose of LDN up and down the scale repeatedly to no avail. I felt in some ways it was making me worse; more fatigued.
In context ↗ - anti parasitics · No change
I have used all day chemist successfully for cOnTrOvErSiAl anti parasitics, but unfortunately that didn’t work.
In context ↗ - painkillers (opioid and non-opioid) · Not said
I only ever took a mix of opioid and non-opioid painkillers to manage my MS symptoms, such as Lyrica, to manage at work, which I stopped when long covid started.
In context ↗ - Lyrica · Not said
such as Lyrica, to manage at work, which I stopped when long covid started.
In context ↗ - workouts / pushing to fatigue · Much worse
Every time I got the tiniest bit better, my ego and old patterns of pushing to fatigue during the workout kicked in, until I was bedbound.
In context ↗ - wheelchair · Worse
I had a trial of one and it just couldn’t do anything and exhausted me further.
In context ↗ - Mestinon · No change
I started Mestinon recently too, I had high hopes but don’t feel much of anything and it’s been a couple of weeks.
In context ↗ - oxy · Helped
The only thing that gives me stability back for a couple of hours is oxy. Something to do with endorphin receptors and autonomic stability
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| repeatedly during her illness | small gains lost after pushing to fatigue in workouts, back to bedboundEvery time I got the tiniest bit better, my ego and old patterns of pushing to fatigue during the workout kicked in, until I was bedboundIn context ↗ |
| 2026-08-18 | still bedbound; Mestinon no help, oxycodone gives a few hours of stabilityI started Mestinon recently too, I had high hopes but don’t feel much of anything and it’s been a couple of weeks. The only thing that gives me stability back for a couple of hours is oxyIn context ↗ |
Adverse events
- Low-dose naltrexone“We spent most of a year adjusting the dose of LDN up and down the scale repeatedly to no avail. I felt in some ways it was making me worse; more fatigued.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I’ve been holding at 4.5 mg for a long time based on previous advice, but I’m slowly ramping down, because I think for me it’s worsening paralysis and general hyperalgesia.” In context ↗ Made symptoms worse
- Wheelchair (manual or powered)“I had a trial of one and it just couldn’t do anything and exhausted me further.” In context ↗ Made symptoms worse
Symptoms mentioned
Headaches & migraineMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
It has a single-handedly represented my worsening by a notch for each time I overdid it
In context ↗ - Muscle weakness
I think for me it’s worsening paralysis and general hyperalgesia
In context ↗ - Neuropathy & tingling
tingling in paralysis in my dominant hand the more that I used it
In context ↗ - Temperature regulation
extremely bad temperature management
In context ↗ - Headaches & migraine
One day I woke up with the most unholy migraine and no vision in my right eye
In context ↗ - POTS & dysautonomia
Something to do with endorphin receptors and autonomic stability
In context ↗