ME/CFS from 2012, from active to almost nothing, somewhat better with vinegar before meals
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 11 years
- Last post
- Oct 2024
In their words
- Condition: ME/CFS
I've had ME for a good long while now. I have a diagnosis.
In context ↗ - At worst: Moderate
When I got ill I worked a lot and was was active in other areas, so going from that to doing nothing was really hard.
In context ↗ - Now: Somewhat better
While I'm a long way from being healthy, my base state is significantly better
In context ↗ - Began after: stress or burnout
I used to lift before me/cfs. It's what I believe drove me over the edge.
Read from 26 of their posts and comments; links to the 17 this page draws on
Summary
Coast 67379 fell ill with ME/CFS around 2012, which they linked to weightlifting, going from working and being active to doing almost nothing. Over the years B12 injections were a lifechanger, Xolair helped breathing though itching remained, rehydration salts reduced brain fog, low-dose naltrexone works well, and 5 Tibetan exercises didn't cause a crash; vinegar before meals left their base state significantly better from 2023. They were still a long way from healthy in late 2023.
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What they tried
What they credit
Also tried
Their words about each treatment
- Mekabolomine (B12 injections) · Helped a lot
Ingesting it barely made a difference, injecting it has been a lifechanger for me.
In context ↗ - vitamin D supplements · Helped
I tested for almost zero (my docs words) and got immediately taken on supplements and it's helped.
In context ↗ - ketamine · Helped
This is my experience as well.
In context ↗ - alcohol (wine) · Helped
I did have some decent energy levels though. Only good for short periods of time in my opinion, maybe 2-3 days (for me).
In context ↗ - low carb diet · Helped
Try eating low carb, that helps me.
In context ↗ - akupressure mat · Helped
if I lie down on the akupressure mat the likelyhood of me falling back to sleep is far greater
In context ↗ - David Wheldon protocol (ms-treatment.pdf) · Not said
I did https://www.davidwheldon.co.uk/ms-treatment.pdf and felt fine, after the first.. couple of weeks or so.
In context ↗ - MSM · Helped
Msm helps me with my joint pain.
In context ↗ - intermittent fasting (one meal a day, 5 days a week) · Helped
I fast 5/7 days a week. I eat one meal (dinner) and then only drink water when I get hungry.
In context ↗ - LDN · Helped
LDN works pretty well for me. ... Seems to be working well for me, but it's hard to tell because there are so many factors.
- Xolair · Helped a lot
Xolair has worked wonders. I'm still itchy but for the first time I can remember my sinuses are clear and I can breathe much easier.
In context ↗ - Rehydration Salts/Solution (RHS) · Helped
I believe it's because I take RHS morning and evening. ... Got a lot less brainfog when I started it though.
In context ↗ - 5 Tibetans · Helped
This is the first excercise I have done in the last 10 years that didn't make me crash.
In context ↗ - vinegar (non-balsamic, in water) · Helped a lot
While I'm a long way from being healthy, my base state is significantly better and I can think of no other reason for it than the vinegar.
In context ↗ - meditation · Not said
Meditation. I think it's fair to say there's an emotional aspect to ME.
In context ↗ - salt · Helped
I take 4x 1/2 teaspoon of salt per day
In context ↗ - vitamin C · Not said
along with some c-vitamin to flush it down
In context ↗ - Antibiotics (unspecified) · Not said
felt fine, after the first.. couple of weeks or so
In context ↗
Approaches: Diet · 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 |
|---|---|---|---|
| ~2012 | ME onset; stopped working and became largely inactiveWhen I got ill with ME ~10 years agoIn context ↗ | Moderate | |
| 2020-08-05 | B12 injections gave a large improvementinjecting it has been a lifechanger for me.In context ↗ | Moderate | Vitamin B12 |
| 2022-02-22 | health gradually better over the previous six monthsit's been getting better the last 6 months since I've been feeling better (health wise)In context ↗ | Moderate | |
| 2022-05-17 | breathing and sinuses much better on XolairXolair has worked wonders.In context ↗ | Moderate | Omalizumab / Xolair |
| 2023-10-21 | base state significantly better on daily vinegarWhile I'm a long way from being healthy, my base state is significantly betterIn context ↗ | Mild | |
| 2024-10-04 | salt doses cut night-time toilet visitsBrought down my nightly toilet visits from 3-5 to 1.In context ↗ | Mild | Salt, electrolytes and fluids |
Adverse events
- Antibiotics (unspecified)“felt fine, after the first.. couple of weeks or so” In context ↗ Herx / die-off reaction
- Intermittent fasting“Was rough in the beginning, especially getting sleep” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
The results were poor and I often crashed.
In context ↗ - Brain fog
Got a lot less brainfog when I started it though.
In context ↗ - Sleep problems
when I wake after what feels like a negative amount of sleep
In context ↗ - Pain & fibromyalgia
Msm helps me with my joint pain.
In context ↗ - Breathlessness
even with just doing menial tasks like doing the dishes, makes me breathe very hard
In context ↗ - Mast cell (MCAS) & allergies
I'm still itchy but for the first time I can remember my sinuses are clear
In context ↗
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