ME/CFS with brain fog and PEM, somewhat better on methyl-B12 and supplements
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 years
- Last post
- Dec 2024
In their words
- Condition: ME/CFS
I'm neuro-cognitive cfs
In context ↗ - At worst: Moderate
At most I can handle going out to eat once in a while with people or a car ride to the store with someone.
In context ↗ - Now: Somewhat better
Yeah I'm at a somewhat better baseline now with the rest of my stack but my cognitive PEM can still turn into a disaster
In context ↗
Read from 27 of their posts and comments; links to the 21 this page draws on
Summary
Meadow 67645 has had ME/CFS for over seven years, with cognitive PEM, brain fog, daily flu-like feelings, air hunger, muscle heaviness and food and gut sensitivities. They describe a somewhat better baseline held up by a supplement stack, including 2000 mcg of methyl-B12 daily that they say keeps them alive. Stopping everything crashes them back to housebound.
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What they tried
What they credit
Also tried
Their words about each treatment
- methyl-b12 · Helped
Methyl-b12 is one of the only things keeping me alive, my sweet spot with it is 2000 mcg and I use the bestvite capsules that only have a little rice flour in them.
In context ↗ - nicotine patches · Helped
Nicotine improves my focus and I can feel more dopamine like feelings with it too but after it starts to wear off my focus goes into the negatives and my anxiety shoots through the roof.
In context ↗ - vitamin D3 (vegan d3) and calcifediol · Worse
I had to do so much trickery with my body to get it to accept d3.
In context ↗ - salt · Helped
if I eat a bunch of salt when it hits it becomes slightly more tolerable
In context ↗ - coffee · Helped
I cant live without it, like I actually can't as my body would stop functioning.
In context ↗ - THC · Worse
all forms of thc besides microdoses in full spectrum cbd oil make me go mad. I cant handle it at all, its not my personality.
In context ↗ - kava · Worse
I used to be a heavy kava drinker, eventually gave me bad digestive issues but with mine now I might go back
In context ↗ - fasting / partially fasted state · Helped
The only way I found to minimize it is fasting and living in a partially fasted state.
In context ↗ - dietary trigger elimination · Helped
I've also pinned down a lot of stranger dietary triggers making worse, so there is also a lot of micromanagement involved too im still figuring out.
In context ↗ - supplement stack · Helped
my supplement line up keeps me at least alive as if it drops disaster strikes
In context ↗ - therapy · Not said
I forced myself to go to a later therapy appointment and the brain fog was so thick that I could barely talk right or fluidly think.
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. The first step with a time is 7.7 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 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 |
|---|---|---|---|
| 2017 | became ill with ME/CFSI needed it since I got ill over 7 years ago at this point.In context ↗ | Not stated | |
| — | crashed to housebound when off their supplementsIf I stop everything I just crash to housebound.In context ↗ | Moderate | |
| 2024-09-03 | made some progress on a supplement stackI've made progress and with every failure I only learn more.In context ↗ | Moderate | Vitamin B12 |
| 2024-11-06 | somewhat better baseline but still very limited sociallyAt most I can handle going out to eat once in a while with people or a car ride to the store with someone.In context ↗ | Moderate |
Adverse events
- Vitamin B12“I can override the physical fatigue with high doses of methyl-b12 but there's side effects for doing so” In context ↗ Side effects
- Vitamin B12“Ill typically take more if I'm in for a brutal week energy drain wise I cant avoid but also ends up cognitively taxing me more in the long run.” In context ↗ Made symptoms worse
- Vitamin B12“If I go lower its not enough and higher I get the adrenaline dump and crash.” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“I cant handle ANY vitamin D supplements without life ruining side effects either” In context ↗ Side effects
- Vitamin D and sun exposure“I still got far sicker with every dose but sometimes I'd get more energy randomly.” In context ↗ Made symptoms worse
- Vitamin D and sun exposure“I then tried calcifediol for a couple days which made me extremely lethargic but better in some areas, I couldn't continue taking it.” In context ↗ Made symptoms worse
- Nicotine patches“Nicotine helps for a brief amount of time but then I rebound into a far worse position” In context ↗ Made symptoms worse
- Nicotine patches“after it starts to wear off my focus goes into the negatives and my anxiety shoots through the roof” In context ↗ Mood or psychiatric effects
- Nicotine patches“Nicotine is kind of on and off with me with the patches, sometimes it's alright and others I just feel more tired.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“all forms of thc besides microdoses in full spectrum cbd oil make me go mad. I cant handle it at all” In context ↗ Mood or psychiatric effects
- Kava“I used to be a heavy kava drinker, eventually gave me bad digestive issues” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
my cognitive PEM can still turn into a disaster if I don't abide my old limits
In context ↗ - Brain fog
the brain fog was so thick that I could barely talk right or fluidly think
In context ↗ - Flu-like symptoms
its the daily flu like garbage
In context ↗ - Anxiety & low mood
anxiety and other mood stuff
In context ↗ - Gut problems
My guts are like that, too much too often and I'm a mess
In context ↗ - Muscle weakness
lead body when exhausted
In context ↗ - Temperature regulation
I get overheated but its difficult for me to sweat in general
In context ↗
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