Mostly bedbound with long COVID a year in, much better doing wheelchair parasports on meds
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
19y- I got Covid last March and have been a clarinetist for the past 8 years. I was very sick for about 5 weeks
In context ↗ - At worst: Severe
Almost 12 months now and still mostly bedbound.
In context ↗ - Now: Much better
I now do parasports (wheelchair basketball, wheelchair racing, wheelchair tennis, etc). It makes a world of difference being able to be active, even if it’s not the same as before
In context ↗ - Began after: COVID
I got Covid last March
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
COVID in March 2020 left this 19-year-old student very sick for five weeks; by six months they hiked and climbed again. An autumn relapse brought asthma and stopped them playing clarinet, and they were mostly bedbound a year in. An inhaler improved breathing and let them play again; supplements, healthy eating and cautious walks helped energy, though walking too far put them in bed for days. By 2026, on mitochondrial supplements plus MCAS and POTS medication, they do wheelchair parasports.
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What they tried
What they credit
Also tried
Their words about each treatment
- preventer inhaler and rescue inhaler · Helped
I’m now on a preventer inhaler twice a day and I have a rescue inhaler too. It hasn’t solved all my problems but it has improved my breathing a lot!
In context ↗ - loads of supplements · Helped
I’m also on loads of supplements and eating healthier and I go for a walk every day when I can. This has definitely helped my energy levels and concentration
In context ↗ - walk every day / training myself up slowly · Helped
I go for a walk every day when I can. This has definitely helped my energy levels and concentration but I need to be careful with the walking because if I go slightly too far it’ll put me in bed for days
In context ↗ - high dose Coenzyme Q10 · Helped a lot
Mainly in the form of supplements that have absolutely changed my life- high dose Coenzyme Q10, L-Carnatine, Creatine
In context ↗ - L-Carnatine · Helped a lot
supplements that have absolutely changed my life- high dose Coenzyme Q10, L-Carnatine, Creatine
In context ↗ - Creatine · Helped
Creatine (when I can tolerate it because I have issues with water absorption), Augmented NAC, Glutathione
In context ↗ - Augmented NAC · Helped a lot
Augmented NAC, Glutathione and I’ll be starting D-Ribose soon too.
In context ↗ - Low Dose Naltrexone (LDN) · Helped
These in combination with a very specifically compounded formula of Low Dose Naltrexone (LDN by itself doesn’t work for me without these supplements).
In context ↗ - medicating my MCAS · Helped
6 years later with extreme amounts of mitochondrial support and medicating my MCAS and POTS, I now do parasports
In context ↗
Approaches: Amino acids and carnitine · Exercise and activity · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2020 | COVID-19; very sick for about five weeksI was very sick for about 5 weeks and genuinely thought I was taking my last breathsIn context ↗ | Severe | |
| 6 months post covid (around September 2020) | hiking and climbing mountainsI was hiking and climbing mountains at 6 months post covidIn context ↗ | Near normal | |
| September/October 2020 | big relapse related to covid, left with asthma and unable to play clarinetI had a health relapse in September related to covid which left me with asthma and completely unable to playIn context ↗ | Severe | |
| January 2021 | on the right meds, able to breathe at night, play again and walk longer distancesnow that I’m on the right meds I’m able to breathe at night and play againIn context ↗ | Moderate | |
| March 2021 | mostly bedbound almost 12 months inAlmost 12 months now and still mostly bedbound.In context ↗ | Severe | |
| August/September 2026 | doing wheelchair parasports after mitochondrial supplements and MCAS/POTS medicationI now do parasports (wheelchair basketball, wheelchair racing, wheelchair tennis, etc)In context ↗ | Moderate | CoQ10 / ubiquinol |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if I go slightly too far it’ll put me in bed for days
In context ↗ - Breathlessness
left me with asthma and completely unable to play
In context ↗ - POTS & dysautonomia
medicating my MCAS and POTS
In context ↗ - Brain fog
This has definitely helped my energy levels and concentration
In context ↗
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