Severe ME/CFS with pain and gut damage, a little better after leaving a mouldy apartment
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2022
In their words
- Condition: ME/CFS
The most help I’ve found through this illness has been listening to my own body
In context ↗ - At worst: Severe
I’ve seen this to be true for other severe cases like myself
In context ↗ - Now: Somewhat better
I’ve never met anyone who has cfs who has not at least improved a little once they get out of an apartment that has mold. Myself included.
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
Dune 77412 wrote on r/cfs in 2022 as a self-described severe CFS case with MCAS, severe pain and gut damage that stopped them taking things by mouth, needing a litre of IV saline weekly. They said diet drove their symptoms: sugar triggered candida and inflammation and vegetables tore their stomach up, so they ate mostly red meat, carbs and fat. They improved a little after leaving a mouldy apartment.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- lots of fat · Helped
I do well with lots of fat myself.
In context ↗ - no sugar including fruit, no gluten, no alcohol, no caffeine, no fake sugar · Helped
The most help I’ve found through this illness has been listening to my own body, really watching what I eat (no sugar including fruit, no gluten, no alcohol, no caffeine, no fake sugar), and resting.
In context ↗ - resting · Helped
listening to my own body ... and resting
In context ↗ - red meat, carbs and fat diet · Helped
My best diet is lots of red meat, carbs and fat. ... If I eat lots of veggies my stomach gets torn up.
In context ↗ - IV saline · Not said
I require 1 Liter of IV saline per week because stomach damage causes me to not be able to take things. ... I always feel sleepy and chilled out after.
- Pepcid · Not said
I had to be off Pepcid for a while a couple of times, and there was always a period where after getting back on I’d feel tired and icky for a while, but it slowly wore off.
In context ↗ - getting out of an apartment that has mold · Helped
I’ve never met anyone who has cfs who has not at least improved a little once they get out of an apartment that has mold. Myself included.
In context ↗ - lactose pill · No change
For me it doesn’t matter if I drink Lactaid or take a lactose pill, the milk itself causes inflammation and my mast cell to flair up.
In context ↗ - benzos · Worse
I was on benzos for a long time. ... They will not help your situation only make your illness much much much worse.
In context ↗
Approaches: Diet · Mould avoidance · Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2022-06-28 | described themselves as a severe case with pain and food-triggered inflammationI’ve seen this to be true for other severe cases like myself, but people can be different.In context ↗ | Severe |
| 2022-07-16 | improved a little after getting out of a mouldy apartmentI’ve never met anyone who has cfs who has not at least improved a little once they get out of an apartment that has mold. Myself included.In context ↗ | Severe |
| 2022-07-27 | still reacting to milk with mast cell flaresthe milk itself causes inflammation and my mast cell to flair upIn context ↗ | Severe |
Adverse events
- Famotidine (Pepcid)“after getting back on I’d feel tired and icky for a while” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
My pain is through the roof if I eat “normal”.
In context ↗ - Mast cell (MCAS) & allergies
My MCAS is flared up like a beast at the moment.
In context ↗ - Gut problems
If I eat lots of veggies my stomach gets torn up.
In context ↗ - POTS & dysautonomia
for me I require 1 Liter of IV saline per week because stomach damage causes me to not be able to take things
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound at worst with long COVID, now much better with pacing and supplements
Pebble 85566 caught Covid in early 2025 while burnt out and developed long Covid with POTS and ME/CFS, becoming bedbound at worst. Pacing and naturopath-prescribed supplements, which they credit, brought them to moderate/mild by January 2026. A five-week…
-
Long COVID, unable to work 1.5 years, now somewhat better with antihistamines and diet
Spruce 93935 got COVID in early 2020 and developed long COVID, unable to work for 1.5 years and with severe chronic pain for months at the start. They credit antihistamines for MCAS, diet changes, CoQ10, somatic experiencing and a movement and touch physical…
-
Long COVID with crippling fatigue, now much better with pacing and low-histamine diet
Former mountain-bike racer who fell ill with long COVID in late 2021; two years in was their lowest point, with 40 pounds lost and crippling fatigue, anxiety and cramps. They improved from about 26 months, crediting time, pacing, a low-histamine diet,…
-
Not enough detail to draw a path
ME/CFS: unable to walk or use hands after relapse, slowly improving with rest and pacing
Crest 83796 caught COVID in March 2020 and developed long COVID; a June 2020 relapse left her unable to walk or use her hands and caused speech issues. She improved gradually with rest, pacing, physical and speech therapy, diet and meditation. COVID vaccines…