Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[SNT Gatchaman]

Example of rapid progression from stable mild to severe level crash.

Have been crashing over last few weeks. as of 48 hours ago I can no longer walk at all. I can’t make it to bathroom without heart racing and legs trembling (no longer trying to either). Lost ability to swallow last night. I was very mild 3 months ago. I could ski, hike, go out with friends. Not on any meds.

They had tried new supplements, though I suspect not related to deterioration and didn't precede the overall deterioration. Note the cycling of onset of symptoms followed by apparent recovery, then deterioration. This mirrors my own experience.

I tried to travel abroad for the first time getting sick. Had new onset severe pain, went to ER. Combo of er miss dx + jet lag + drug side effects ended with me in the hospital for 3 days. Got worse in the hospital from all the meds that they gave me. got home spent two weeks recovering. Felt totally normal. Had a totally normal week of doing things. Week after starting napping more not like a considerable amount more. Suddenly one night sitting at dinner I got really hot, dizzy and nauseous. Woke up next day with the worst fatigue. There’s been good days and bad days. I’ve been pretty comfortable as long as I stick to my bed, going to bathroom, and eating. Tried starting some new supplements my dr recommended. Crashed again. Haven’t been able to stabilize. Don’t leave my bed at all now. Can’t stand or swallow.

 

[Hutan]

That reddit thread is quite the roll call of supplements and actions that people are suggesting:
rest, benzodiazepine, ice-packs on neck, anti-histamine, Pepcid, propranolol, LDN, valium, protein smoothies, ibuprofen, NAC, dextromorphan, creatine, theobromine, audiobooks, motherwort, omega 3, ashwaghanda, lemon balm, linden, LDN again

And that's just 4 hours since the OP posted! All posted with good intent I am sure, but so many posted with high confidence that these things help. We have no idea about what helps, it's such a shame.

For example, I personally think the ibuprofen might help, even if just with making things more bearable, and it's something we could have had a trial of - does it reduce the severity of PEM? But, we don't even know that.

 

[Chandelier]

Options for gentle dentist treatments that might be helpful to know for very severe pwME:

TL;DR: Geriatric dentist offered help during bedside visit for dental problems in bedbound pwME

I'm very severe and bedbound and met a dentist who is very knowledgeable about geriatric dentistry.

He recommended using Tooth Mousse by GC International to gelp remineralize the tooth enamel after meals. This to aid cavity prevention.

It was developed to help kids with "chalky teeth" and he said he'd used it to good effect in geriatric patients in retirement and care homes who have trouble with regular dental hygiene.

---

As an aside, he offered me alternative treatments feasible at my home to either drilling/regular filling or tooth extraction. Not all would be viable long-term but having options at all was a huge relief.

I lost a filling a year ago and have a cavi6in another tooth that need treatment.

He proposed to a) cleanse and disinfect the site of the broken filling and seal it with fluoride lacquer. This would have to be regularly reapplied by caretakers. b) to use colloidal silver to disinfect the broken filling and seal it, either temporarily with fluoride lacquer or long-term with dental cement. c) to use atraumatic dental procedure to clean the site of the damaged filling and possible additional cavities with handheld tools (not power tools) and seal the cavity with dental cement.

The latter is a technique and material commonly used in South American (rural?) dentistry. It doesn't require a mobile treatment unit with dental suction system to properly bind (as do more modern components).

Reddit link