Slept 20 hours a day and barely crossed the house, now much better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
profile for mild to moderate ME/CFS (and POTS and MCAS)
In context ↗ - At worst: Severe
I was exhausted, sleeping 20hours a day and barely able to walk to the other end of the house.
In context ↗ - Now: Much better
things are looking up again. But I have a fair way to go to get back to that point. Still in the mild category though
In context ↗ - Began after: nothing they could name
Hated PE but made it through. In retrospect I understand why it all felt so hard.
In context ↗
Read from 6 of their posts and comments; links to the 5 this page draws on
Summary
At their worst they slept 20 hours a day and could barely walk across the house, with light and noise sensitivity. They had Lyme treatment, and after low-dose naltrexone they worked four days a week and walked 12,000 steps a day on gentle routes. A whooping cough vaccine four years ago cost them those long walks, and losing their Lyme-literate doctor set them back; vitamin A and MCAS treatment have things looking up, though they are still mildly ill with a way to go.
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What they tried
What they credit
Also tried
Their words about each treatment
- rest · Helped
I swapped my showers to night time when I got sicker. ... Any exercise (walking, shopping, cleaning) gets done after 2pm because otherwise I'm wiped for the rest of the day.
- water · Helped
I've also recently started drinking 250-500mL of water before getting up in the morning, and that's making a bigger difference than I would've imagined it could. Never really treated the orthostatic intolerance before.
In context ↗ - Lyme treatment · Helped
Mum and I both got positive results from a Lyme PCR within weeks of each other. ... I no longer have access to a Lyme literate doctor and have gone backwards.
In context ↗ - LDN · Helped a lot
I've had a couple years as OP describes more recently too. After LDN. Working 4 days a week at a desk job. 12k steps a day
In context ↗ - Extra Vit A · Helped
Extra Vit A, some histamine interolance/MCAS treatment and things are looking up again.
In context ↗ - COVID vaccination as treatment · Not said
My reaction to the covid vaccine was in line with expectations - a couple of off days.
In context ↗
Approaches: Antibiotics
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|---|
| school age | already unwell at school, struggled through PEHated PE but made it through. In retrospect I understand why it all felt so hard.In context ↗ | Mild | |
| age 25 | got much worse at 25Got way worse at 25 though.In context ↗ | Not stated | |
| — | exhausted, sleeping 20 hours a day, barely able to walk across the houseI was exhausted, sleeping 20hours a day and barely able to walk to the other end of the house.In context ↗ | Severe | |
| — | couple of years of near-normal lifeI've had a couple years as OP describes more recently too. After LDN. Working 4 days a week at a desk job. 12k steps a day, if I walked in the afternoon/evening on routes with minimal hills.In context ↗ | Near normal | Low-dose naltrexone |
| 4 years ago | whooping cough/diphtheria/tetanus vaccine; lost the long walksGot tripped up by the whooping cough/diphtheria/tetanus vaccine 4 years ago and lost my ability to do those long walks.In context ↗ | Mild | |
| 2024-12 | symptoms improved significantly for no clear reasonMy symptoms have improved significantly since then. Not sure what I did to make that happen but the specialist wasn't surprised.In context ↗ | Mild | |
| 2025-01 | went backwards after losing access to a Lyme-literate doctorI no longer have access to a Lyme literate doctor and have gone backwards.In context ↗ | Mild | |
| 2025-08 | looking up again with extra vitamin A and MCAS treatment, still mildly illExtra Vit A, some histamine interolance/MCAS treatment and things are looking up again. But I have a fair way to go to get back to that point. Still in the mild category thoughIn context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“My reaction to the covid vaccine was in line with expectations - a couple of off days.” In context ↗ Side effects
- “The pertussis vaccine though, had a significant impact on my health. ... Got tripped up by the whooping cough/diphtheria/tetanus vaccine 4 years ago and lost my ability to do those long walks.” Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Any exercise (walking, shopping, cleaning) gets done after 2pm because otherwise I'm wiped for the rest of the day.
In context ↗ - Sleep problems
I was exhausted, sleeping 20hours a day and barely able to walk to the other end of the house.
In context ↗ - Light & noise sensitivity
In retrospect I was also super sensitive to noise, light and being touched hurt so much.
In context ↗ - Headaches & migraine
without triggering a migraine from a sugar crash afterwards
In context ↗ - POTS & dysautonomia
Never really treated the orthostatic intolerance before.
In context ↗ - Mast cell (MCAS) & allergies
(and POTS and MCAS)
In context ↗
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