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ME/CFS Moderate → relapsedIll 4 years before improving or writing

Mild-to-moderate ME/CFS with PEM and pain; DMT and thiamine helped, then relapsed

Condition
ME/CFS
At worst
Moderate (mostly housebound)
Ill before improving or writing
4 years
Last post
Sep 2023
In their words
  • Condition: ME/CFSI discovered the value of N, N-DMT for treating CFS In context ↗
  • At worst: ModerateI’m mild/ moderate. In context ↗
  • Now: RelapsedI had a bunch of remissions my first 4 years, like maybe 30% of that time I was in remission. Now it seems less and less likely that I’ll have another one In context ↗
Read from 10 of their posts and comments; links to the 9 this page draws on

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Summary

A person described mild-to-moderate ME/CFS with PEM, chronic pain and depression, ill for over four years with remissions in the first four, now less likely. They credited N,N-DMT with temporary pain relief, clearing PEM and resetting severity from moderate to mild, and later thiamine and B-vitamin/cofactor supplements with feeling better after a week. Cannabis stopped crashes and eased pain but caused tachycardia, and depression if overused.

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What they tried

Their words about each treatment
  • methylated B complexes / basic B's · WorseI have a severe paradoxical reaction to methylated B complexes that includes anhedonia ... I had to stop taking those. In context ↗
  • thiamine (TTFD) · HelpedGood results with TTFD format. ... also I’m benefitting a lot from thiamine
  • magnesium, electrolytes (sodium, potassium) · HelpedI just restarted a supplement regimen and this time I’m starting with the basic B’s and cofactors—magnesium, sodium, potassium. Mildly reacting at the beginning but starting to feel pretty good after a week+ in. In context ↗
  • cannabis (weed / THC) · HelpedIt can stop an upcoming crash dead in its tracks. I feel better the next day too. ... a couple times of week is amazing. In context ↗
  • healthy diet habits · HelpedPairing occasional weed use with healthy diet habits is honestly as close to feeling healthy as I can get. In context ↗
  • modafinil · Not saidI haven’t done many, but that includes things like modafinal, adderal, cocaine of course, even coffee and sugar. In context ↗
  • N, N-DMT · Helped a lotsmoking N, N-DMT in a high quality form could do the following for me: ease pain symptoms, rejuvenate me physically and mentally, eliminate post-exertional malaise and reset my severity (from moderate to mild) In context ↗
  • going some place with clean air, low population, elevation · Helped a lotGeographic location has the biggest impact on my symptom severity. Going some place with clean air, low population, elevation or perhaps some other unknown factor will see me improving within 12 hours. In context ↗
  • ketamine · HelpedIt’s pretty nice, like a vacation for your brain (strong anti-inflammatory effects). Long term, it doesn’t seem to have much affect In context ↗

Approaches: POTS medication · Other drugs and medicines · Supplements

Their path

Very severeSevereModerateMildNear normalRecovered

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
WhenWhat happenedWhere they wereAfter
onsetME/CFS onset; later remissions in first four yearsI had a bunch of remissions my first 4 years In context ↗Not stated
first 4 yearsseveral remissions, about 30% of the first four yearsI had a bunch of remissions my first 4 years, like maybe 30% of that time I was in remission In context ↗Mild
a few years agoN,N-DMT eased pain, cleared PEM, reset severity from moderate to mildeliminate post-exertional malaise and reset my severity (from moderate to mild) In context ↗Mild
2023-06-26restarted B-vitamin/cofactor regimen; felt pretty good after a weekstarting to feel pretty good after a week+ in. In context ↗MildThiamine / benfotiamine
2023-06-30cannabis stopped an upcoming crash; felt better next dayIt can stop an upcoming crash dead in its tracks. I feel better the next day too. In context ↗Mild
2023-07-20fewer remissions; months without oneNow it seems less and less likely that I’ll have another one as months and months pass without it In context ↗Moderate
2023-07-26still mild/moderate; no recent remissionI’m mild/ moderate. In context ↗Moderate

Adverse events

  • Vitamin B complex“I have a severe paradoxical reaction to methylated B complexes that includes anhedonia (I’m very undermethylated)…I had to stop taking those.” In context ↗ Mood or psychiatric effects
  • Cannabis (THC, marijuana)“I have to limit my usage of it because I’ll get depressed if I do it too much, but a couple times of week is amazing.” In context ↗ Mood or psychiatric effects
  • Cannabis (THC, marijuana)“I’ve seen marijuana give me tachycardia (I was hooked up to medical equipment at the time). I imagine that it must usually do that to me but I like the benefits anyways” In context ↗ Heart rhythm problems
  • DMT“I reached the conclusion that the mental effects of smoking DMT are too strong, in general, to warrant frequent use for pain-relief.” In context ↗ Side effects

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseIt can stop an upcoming crash dead in its tracks. In context ↗
  • Pain & fibromyalgiachronic pain relief, mood boost In context ↗
  • Heart symptoms & palpitationsI’ve seen marijuana give me tachycardia In context ↗
  • Anxiety & low moodI’ll get depressed if I do it too much In context ↗

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