Long COVID, semi-functional 2-3 days a week, now somewhat better with LDN and leg massage
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I have been managing Long Covid symptoms since the second infection (of three).
In context ↗ - At worst: Moderate
I am only semi functional 2-3 days per week on average, but it's starting to feel like 3-4, if exposures are managed with appropriate recovery time.
In context ↗ - Now: Somewhat better
I still have fatigue issues, but it's better. I can go for a walk up to 5k steps 3-4x per week now, whereas I could hardly walk any distance a few years ago without significant impact and exhaustion.
In context ↗ - Began after: COVID
I have been managing Long Covid symptoms since the second infection (of three).
In context ↗
Read from 19 of their posts and comments; links to the 13 this page draws on
Summary
A UK male student who developed long COVID after a second COVID-19 infection, he was semi-functional only two to three days a week, with dizziness, double vision, insomnia and breathlessness, and said he had never recovered. With LDN, isotretinoin, creatine and leg massage he improved gradually, reaching walks of up to 5,000 steps three to four times a week by 2026, though fatigue and cognitive limits persisted.
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What they tried
What they credit
Also tried
Their words about each treatment
- reducing obligations and exposures · No change
other than reducing obligations and exposures, I haven't experienced anything that I would describe as 'recovery'
In context ↗ - LDN · Helped
I am also using LDN (3.0mg), and have seen inflammation baseline reduction
In context ↗ - massage system for legs that inflates and mimics lymph massage · Helped
I recently got a massage system for legs that inflates and mimics lymph massage; it's been a game changer
In context ↗ - prism training tool · Helped
The prism training tool has been helpful to see how I am doing
In context ↗ - 5HTP · Helped
now supplement 5HTP with the evening LDN dosage and sleep has improved a lot
In context ↗ - cycling home trainer · Worse
I've gotten a cycling home trainer to log some cardio and started with just 20 minutes. That was too much.
In context ↗ - isotretinoin · Helped
I have seen positive effects of isotretinoin ... regarding microglial stabilisation that affects inflammation flares
In context ↗ - GRF1-27 · Not said
I have used LDN, isotretinoin, and GRF1-27, besides consistent leg massage, as much sleep as I can get.
In context ↗ - tirzepatide · Helped
tirzepatide (50IU) ... is showing some improved cognitive tendencies
In context ↗ - creatine · Not said
otherwise supplement with creatine as an ATP precursor
In context ↗ - lymphmyosot by Heel · Not said
I use lymphmyosot by Heel to keep lymph activity in check.
In context ↗ - 3rd treatment attempt (dermatologist) · Helped
I'm on the 3rd treatment attempt and fortunately it's helping
In context ↗
Approaches: Alternative therapies · Other drugs and medicines
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 2.2 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 | After |
|---|---|---|---|
| 2022 | long COVID began after a second COVID-19 infectionI have been managing Long Covid symptoms since the second infection (of three).In context ↗ | Not stated | |
| 2024-09-02 | barely treading water, few good daysI feel like my good days are just about treading water, and there are not many of them.In context ↗ | Moderate | |
| 2024-10-21 | gradual improvement with self-support approaches; semi-functional most of the weekI use a variety of approaches to support myself, and feel like I am gradually improving.In context ↗ | Moderate | |
| 2026-08-20 | walking up to 5k steps 3-4 times a week; fatigue and cognition betterI can go for a walk up to 5k steps 3-4x per week now, whereas I could hardly walk any distance a few years agoIn context ↗ | Mild | Low-dose naltrexone |
| 2026-09-21 | inflammation-related symptoms milder on LDNIn my observation LDN has correlated with inflammation related symptoms not worsening generally and being milder.In context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Everyday exercise and activity“I've gotten a cycling home trainer to log some cardio and started with just 20 minutes. That was too much.” In context ↗ Made symptoms worse
- Low-dose naltrexone“The only downside is the emotional flatness and feeling of indifference regarding food.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
whereas I could hardly walk any distance a few years ago without significant impact and exhaustion
In context ↗ - Brain fog
My cognitive load capacity has gradually improved too, but still fluctuates.
In context ↗ - POTS & dysautonomia
but do occasionally get a bit dizzy
In context ↗ - Sleep problems
I have had insomnia. Ignored.
In context ↗ - Pain & fibromyalgia
have joint pain in my ankles, knees and hips from walking
In context ↗ - Headaches & migraine
I had a lot of sensitivity develop and still get migraines
In context ↗ - Breathlessness
Respiratory issues and feeling suffocated, especially at night. Ignored.
In context ↗ - Heart symptoms & palpitations
I had the heart stuff and had it monitored. Ignored.
In context ↗ - Gut problems
I had the digestion thing. Ignored.
In context ↗ - Vision problems
although the double vision has not completely resolved, it is significantly reduced
In context ↗ - Hair loss
Periodic hair loss. Ignored.
In context ↗
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