Long COVID
Severe → no benefitIll for 6 years
Long COVID, almost completely bed or couch bound, no improvement after LDN and Abilify
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Jan 2026
In their words
- Condition: Long COVID
Yes, I'm year 4/5 Long Covid (March 2020)
In context ↗ - At worst: Severe
I've gotten worse; almost completely bed/couch bound.
In context ↗ - Now: No benefit
I'm actually no better than when I finally got referred in late 2022
In context ↗ - Began after: COVID
I had gotten LC in March 2020
In context ↗
Read from 14 of their posts and comments; links to the 13 this page draws on
Summary
A woman who fell ill with long COVID in March 2020 was almost completely bed or couch bound by 2024 and later used a wheelchair or rollator depending on distance. She tried LDN and low-dose Abilify; LDN did not help and Abilify caused severe side effects. She later got much worse and her baseline remained lower. Pacing, a Visible heart-rate monitor and mobility aids helped her cope, but years on she reported no real improvement.
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What they tried
Also tried
gallbladder removal· HelpedVisible app and heart rate monitor· Helpedlow dose Naltrexone (LDN)· No changenasal spray· No changepacing· No changelow dose Abilify· Worsecolonoscopy· Much worseHydroxychlorquine· Not saidFitbit watch· Not saidanti-inflammatory diet· Not saidKetotifen powder in capsules· Not saidLPlantarum· Not said
Their words about each treatment
- low dose Naltrexone (LDN) · No change
The first drug I tried with Stanford LC Clinic LDN and it didn't work.
In context ↗ - nasal spray · No change
Also did a nasal spray for no sense of smell, taste; didn't work.
In context ↗ - low dose Abilify · Worse
put me low dose Abilify (which has been shown to work with some LC symptoms) ... too many side effects to tolerate
- Hydroxychlorquine · Not said
Just started Hydroxychlorquine; we'll see but I am worried about side effects.
In context ↗ - gallbladder removal · Helped
None of my LC, MECFS, or GI symptoms got worse; in fact the GI symptoms are better.
In context ↗ - Visible app and heart rate monitor · Helped
I've had mine for maybe 6 months and I wish I'd gotten it sooner. ... It makes me feel like I'm not crazy
In context ↗ - Fitbit watch · Not said
I was using my Fitbit watch prior to this and the difference in the data provided is dramatic.
In context ↗ - colonoscopy · Much worse
I got much much worse, and my baseline has remained lower since
In context ↗ - pacing · No change
the strict advice to pace, respect my need for dark and quiet ... has saved my sanity
In context ↗ - anti-inflammatory diet · Not said
and to eat anti-inflammatory has saved my sanity
In context ↗ - Ketotifen powder in capsules · Not said
LC Clinic also prescribed Ketotifen powder in capsules which I am not at the full dosage yet. ... the extra sleep I'm getting is kind of a relief
- LPlantarum · Not said
Unsure whether LPlantarum is helping at this point.
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 4.2 years 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 |
|---|---|---|
| March 2020 | Long COVID beganI had gotten LC in March 2020In context ↗ | Not stated |
| May 2024 | worsened to almost completely bed/couch bound; prescribed a wheelchairI've gotten worse; almost completely bed/couch bound.In context ↗ | Severe |
| October 2024 | much worse after a colonoscopy; baseline stayed lowerI got much much worse, and my baseline has remained lower sinceIn context ↗ | Severe |
| January 2026 | nearly six years in, still trialling off-label treatmentsThe only reason I'm continuing with it is that the extra sleep I'm getting is kind of a relief.In context ↗ | Severe |
Adverse events
- Low-dose Abilify / aripiprazole“So far (one month in) I think the Abilify is making all of my symptoms worse.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“my doc had me discontinue use after the first increase due to horrible side effects, mainly make my LC symptoms much worse” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“Then low dose titered Abilify; too many side effects to tolerate.” In context ↗ Side effects
- “both also causes some PEM, due to just overwhelming assault on the senses” In context ↗ Made symptoms worse
- “my first one was transport wheelchair and I started hurting about 3 minutes into a ride” In context ↗ Other
- Ketotifen (Zaditen)“this side effect seems tame. I really hope it works (and that I adapt to the tranquilizing effect)” In context ↗ Side effects
Symptoms mentioned
Brain fogGut problemsLight & noise sensitivityLoss of smell or tasteMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
PEM and brain fog being the ones I hate the most
In context ↗ - Brain fog
My brain fog and fatigue is so so bad rn
In context ↗ - POTS & dysautonomia
My doctor attributes all the many symptoms I have to dysautonomia
In context ↗ - Muscle weakness
my legs fail to work; it's like they just are not getting the signals from my brain
In context ↗ - Loss of smell or taste
Also did a nasal spray for no sense of smell, taste; didn't work.
In context ↗ - Pain & fibromyalgia
it helps with all the other pain we live with
In context ↗ - Gut problems
None of my LC, MECFS, or GI symptoms got worse; in fact the GI symptoms are better.
In context ↗ - Light & noise sensitivity
respect my need for dark and quiet
In context ↗