ME/CFS
Outcome unclear
Bedridden with severe ME/CFS, using xylitol mouthwash and sleep measures
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- Not stated
- Last post
- Aug 2025
In their words
- Condition: ME/CFS
I’m severe/very severe (bedridden)
In context ↗ - At worst: Very severe
I’m severe/very severe (bedridden)
In context ↗
Summary
Posting in August 2025, Shore 46801 described themselves as 'severe/very severe (bedridden)', too ill to brush their teeth as often as they wanted or get to dentist appointments, and used xylitol in water as mouthwash because regular mouthwash triggered their MCAS. Earlier they listed sleep measures they used: glycine, magnesium, melatonin, herbal tea and lorazepam when things got very bad. No onset or change in their condition was described.
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What they tried
Also tried
Lorazepam· HelpedAvoiding blue light before 6 PM· Helpedwarm baths (epsom salts)· Helpedweighted blanket· HelpedGlycine· Not saidMagnesium· Not saidMelatonin· Not saidherbal tea like chamomile or valerian root· Not saidherbal tea like chamomile or valerian root· Not saidxylitol dissolved in water (mouthwash)· Not said
Their words about each treatment
- Glycine · Not said
Glycine + magnesium + melatonin + herbal tea like chamomile or valerian root.
In context ↗ - herbal tea like chamomile or valerian root · Not said
herbal tea like chamomile or valerian root
In context ↗ - Lorazepam · Helped
Lorazepam when it gets very bad.
In context ↗ - Avoiding blue light before 6 PM · Helped
Avoiding blue light before 6 PM
In context ↗ - warm baths (epsom salts) · Helped
warm baths (you can add epsom salts or if you're severe just wash your hands and face with warm water)
In context ↗ - weighted blanket · Helped
and a weighted blanket also help
In context ↗ - xylitol dissolved in water (mouthwash) · Not said
I use xylitol dissolved in water because regular mouthwash has something that triggers my MCAS
In context ↗
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
regular mouthwash has something that triggers my MCAS
In context ↗ - Sleep problems
Lorazepam when it gets very bad.
In context ↗