Bed bound with very severe ME/CFS, now more functional after Stem Cell Educator therapy
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 4 years
- Last post
- Jan 2026
In their words
- Condition: ME/CFS
Diagnosed with autoimmune autonomic neuropathy, post viral dysautonomia and MECFS.
In context ↗ - At worst: Very severe
Very severe for two years (bed bound, light and sound deprivation, constant PEM cycles, unable to speak).
In context ↗ - Now: Somewhat better
Over the past four months I’ve improved significantly from very severe ME (bed bound, unable to speak, light sound deprivation) to closer to severe/moderate (housebound but so much more functional).
In context ↗ - Began after: another virus
Sick since 2021 following upper respiratory infection and course of Augmentin.
In context ↗
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Falling ill in 2021 after an upper respiratory infection, Canyon 14478 had very severe ME/CFS for two years: bed bound, unable to speak, needing light and sound deprivation. From 2025 they improved over several months, crediting Stem Cell Educator therapy (over $30,000) and treating hydrogen sulfide SIBO with an elemental diet and molybdenum. They now call themselves closer to severe/moderate, housebound but far more functional; PEM is less frequent but not resolved.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · No change
I have tried LDN! I’ve tried so many things after years of this and it’s really just been the stuff detailed in the post that’s made a difference.
In context ↗ - extended course of antibiotics for a skin infection · Worse
The antibiotics I was on for the skin infection made the sibo symptoms a lot worse.
In context ↗ - Stem Cell Educator therapy (SCET) · Helped
SCET did seem to help some and I think it allowed me to tolerate what came next.
In context ↗ - elemental diet · Helped
I did it for three weeks straight and then transitioned back to food over like two weeks
In context ↗ - low sulfur diet · Helped
That symptom only improved for me after going on a low sulfur diet.
In context ↗ - molybdenum · Helped
Molybdenum: 150mcg 5-8 times a day (before meals and then extra as needed)
In context ↗ - vitamin B2 (regular riboflavin) · Helped
B2 (regular riboflavin): 6.5mg five times a day (usually before every meal)
In context ↗ - bismuth · Helped
using bismuth and hydroxy b12 to bind H2S
In context ↗ - B12 (methyl and hydroxyl) · Helped
B12 (methyl and hydroxyl): 1mg three times a day
In context ↗ - Epsom salt baths · Helped
Epsom salt baths (non dietary magnesium sulfate) consistently help
In context ↗ - B1 (thiamine hcl) · Helped
B1 (thiamine hcl): 6mg three times a day
In context ↗ - B3(niqcinomide) · Helped
B3(niqcinomide): 80mg three times a day
In context ↗ - B5 (pantothenic acid) · Helped
B5 (pantothenic acid): 25mg three times a day
In context ↗ - B9 (Folinic acid) · Helped
B9 (Folinic acid): 2.5mg three times a day
In context ↗ - xifaxin · Helped
I actually just did a course of xifaxin and bismuth and that helped a little, but elemental was more effective.
In context ↗ - motegrity · Helped
I was having constipation but that has improved with motegrity.
In context ↗
Approaches: Alternative therapies · Antibiotics · Diet · Biologics & antibodies · Other drugs and medicines · Supplements
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 |
|---|---|---|---|
| 2021 | illness began after an upper respiratory infection and a course of AugmentinSick since 2021 following upper respiratory infection and course of Augmentin.In context ↗ | Not stated | |
| — | bed bound, unable to speak, light and sound deprivationVery severe for two years (bed bound, light and sound deprivation, constant PEM cycles, unable to speak).In context ↗ | Very severe | |
| one month post SCET | small gains in PEM, light/sound sensitivity and energy, still bed boundI would’ve still been considered very severe and was still bed bound.In context ↗ | Very severe | Stem cell therapy |
| September 2025 | improved to closer to severe/moderate, housebound but more functionalcloser to severe/moderate (housebound but so much more functional)In context ↗ | Moderate | |
| January 2026 | continuing improvement, including sleep, from treating the gutTurning my attention to my gut has really turned things around for me.In context ↗ | Moderate |
Adverse events
- Antibiotics (unspecified)“The antibiotics I was on for the skin infection made the sibo symptoms a lot worse.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
The PEM is also less frequent and less severe but not entirely resolved.
In context ↗ - Brain fog
my day to day symptoms, especially the neurological ones like headache, fatigue, brain fog, sleep disruption, and neuropathy have all improved!
In context ↗ - Headaches & migraine
Main symptoms: PEM, headaches, extreme fatigue, brain fog, muscle pain, POTS, sleep disturbances, neuropathy.
In context ↗ - POTS & dysautonomia
Even my dysautonomia has improved slightly.
In context ↗ - Sleep problems
I had severe sleep issues that have improved as I’ve treated my gut.
In context ↗ - Neuropathy & tingling
neuropathy have all improved!
In context ↗ - Light & noise sensitivity
At one month post SCET, I had seen some small improvements in PEM, light/sound sensitivity and energy.
In context ↗ - Gut problems
right lower quadrant abdominal pain (ileocecal valve area)
In context ↗
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