ME/CFS
Moderate → somewhat betterIll 10 years before improving or writingNeeds ongoing treatment
In bed for a year with ME/CFS, now somewhat better with ketosis and low-dose Abilify
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 10 years
- Last post
- May 2026
In their words
- Condition: ME/CFS
I've had cfs for ten years
In context ↗ - At worst: Moderate
I'm mild/moderate. I become mostly bedbound when I exert myself, and have low energy on most days. I cannot work etc.
In context ↗ - Now: Somewhat better
LDA transitioned me into mild from moderate, but mild is also so emotionally challenging.
In context ↗ - Began after: another virus
I got the cmv that triggered cfs
In context ↗
Read from 54 of their posts and comments; links to the 34 this page draws on
Summary
Summit 53929 became ill with CFS after a CMV infection around 2014, was in bed for a year by 2018 and later called herself mild to moderate and unable to work. Ketosis gave her more usable hours, and low-dose Abilify moved her from moderate to mild. She was moderate again by 2026, still brain fogged, and said alcohol, Adderall and many supplements only propped her up at a cost.
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What they tried
What they credit
Also tried
dexedrine· Helpedalcohol· Helpedcompression tights· Helpedapple cider vinegar· Helpedphenazopyridine· Helpedvaccines· Helped · wore offLDN· Helpednicotine· Helpedpropranolol· HelpedMagnesium malate· HelpedFeverfew· HelpedCoenzyme q10· HelpedVitamin b2· Helpedmilk thistle· HelpedMestinon· HelpedUbiquinol· HelpedAdderall· HelpedMethelyne blue· Helpedcreatine· Helpedpsychedelics· Helpedduloxetine· No changebeginner aerial silks class· Worsetryptophan· Worsetrazodone· Worse5-htp· Worseglp-1· WorseRetatrutide· WorseBupropion (Wellbutrin)· Not said
Their words about each treatment
- beginner aerial silks class · Worse
That particular class left me fuzzy headed and dizzy for a week afterward
In context ↗ - dexedrine · Helped
Resting this much helps me manage the brain fog, dexedrine also helps
In context ↗ - alcohol · Helped
5 stops PEM to a certain extent
In context ↗ - compression tights · Helped
My doc just prescribed compression tights and I have been fainting less and have a slightly easier time standing
In context ↗ - tryptophan · Worse
I supplemented with tryptophan when I first started getting ill to improve my sleep quality, and the next day was hell
In context ↗ - trazodone · Worse
I initially fell asleep for about an hour on trazodone, then woke up and my brain was on fire
In context ↗ - 5-htp · Worse
If I take 5-htp I end up crying and exhausted the next day
In context ↗ - apple cider vinegar · Helped
Now, when I feel one coming, I drink a few shots worth of apple cider vinegar throughout the day, as much as necessary really
In context ↗ - phenazopyridine · Helped
It helps with pain and also forms a barrier to keep the bacteria from sticking to the lining of your urinary tract
In context ↗ - keto · Helped
I'm keto now but every meal is a chore. Idrc though because I feel better on it ... Seems to prevent crashes for me as well
- rest · Helped
I always end up having a remission of random lengths if I put the time to rest in
In context ↗ - vaccines · Helped
I actually briefly improved after all of my vaccines. Got worse again after catching a very mild case of covid
In context ↗ - LDN · Helped
I like it but it makes me susceptible to migraines
In context ↗ - LDA · Helped a lot
LDA transitioned me into mild from moderate
In context ↗ - nicotine · Helped
It can help me feel more energized but no lasting change
In context ↗ - IV saline · Helped a lot
IVs help me immensely
In context ↗ - propranolol · Helped
Propranalol helped me at first but now I don't need it
In context ↗ - Magnesium malate · Helped
he wanted to start me on a supplement stack ... surprisingly it worked
In context ↗ - Feverfew · Helped
Feverfew - 380mg x2 a day
In context ↗ - Coenzyme q10 · Helped
Coenzyme q10 - 200 mg 2x a day
In context ↗ - Vitamin b2 · Helped
Vitamin b2 - 100 mg a day, sometimes twice
In context ↗ - milk thistle · Helped
I take 3 milk thistle pills before drinking and it helps so much with hangovers
In context ↗ - duloxetine · No change
It was incredibly physically motivating, but it didn't help "fatigue" ... it was masking the fatigue, not treating it
In context ↗ - Mestinon · Helped
Mestinon really helped with my POTS btw!
In context ↗ - L-citruline · Helped
L-citruline: 3,000 mg on an empty stomach. Subtle but consistently better able to move
In context ↗ - Ubiquinol · Helped
Ubiquinol: 400 mg
In context ↗ - Adderall · Helped
Adderall: 10-20mg (couldn't handle while moderate but ok now that im mildish
In context ↗ - Methelyne blue · Helped
Methelyne blue: 10 drops as needed
In context ↗ - creatine · Helped
It helps for sure but it makes me ugly my looks are sort of my only consistent asset right now
In context ↗ - glp-1 · Worse
I wanted to lose some vanity pounds i picked up from lda but the glp-1 made me so tired for a few days ... for now I'm off of them
In context ↗ - Retatrutide · Worse
Retatrutide has been overall bad for my quality of life. I can't access the mania I need to get through projects while I am on it ... It makes me more tired, if anything
In context ↗ - psychedelics · Helped
psychedelics gave me a good spiritual foundation that continues to comfort me on bad days
In context ↗ - Bupropion (Wellbutrin) · Not said
It makes me see the shadow people, unfortunately.
In context ↗
Approaches: POTS medication · Diet · Other drugs and medicines · Radical rest · 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 chart starts 4 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| onset | CFS triggered by a CMV infectionI got the cmv that triggered cfsIn context ↗ | Not stated | |
| 2018 | laid in bed for a yearI had been laying in a bed for a yearIn context ↗ | Moderate | |
| 2022 | remission after a month of restingI was crashing pretty hard for a month and woke up a week ago manic and have been able to work and do stuff I enjoyIn context ↗ | Moderate | Radical rest |
| 2024 | mostly in bed for the summerI had spent the rest of the summer before mostly in bedIn context ↗ | Moderate | |
| 2024-10-16 | weekend lake trip without crashingI didn't crash after despite doing a bit of swimming and walkingIn context ↗ | Mild | Keto and low-carb diets |
| 2025-09-15 | LDA moved her from moderate to mildLDA transitioned me into mild from moderateIn context ↗ | Mild | Low-dose Abilify / aripiprazole |
| 2026-04-30 | moderate again, worse with alcohol and retatrutideI'm moderate but can alleviate my symptoms with 1,000 supplements, Adderall, and liquor + electrolytesIn context ↗ | Moderate |
Adverse events
- Dexamfetamine (Dexedrine)“I take dexedrine, and experience a v similar thing, but my body goes the opposite direction. I get extremely low blood pressure and grey out constantly. Also high HR.” In context ↗ Low blood pressure or fainting
- Tryptophan“I supplemented with tryptophan when I first started getting ill to improve my sleep quality, and the next day was hell. I remember crying, and being entirely unable to move.” In context ↗ Made symptoms worse
- Trazodone (Desyrel)“I initially fell asleep for about an hour on trazodone, then woke up and my brain was on fire. I couldn't fall back asleep” In context ↗ Insomnia from treatment
- 5-HTP“If I take 5-htp I end up crying and exhausted the next day.” In context ↗ Made symptoms worse
- Low-dose naltrexone“LDN lowers my migraine threshold, really wish I could fully explore using it” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“Following because the same thing happened to me. I didn't tough it out because I was still trying to get through school at that point and couldn't afford the derailment. It also seems to lower my migraine threshold.” In context ↗ Insomnia from treatment
- Duloxetine (Cymbalta)“It was incredibly physically motivating, but it didn't help "fatigue". Just turned up the "wired" on the "tired but wired" sensation. Also i couldn't orgasm.” In context ↗ Side effects
- Bupropion (Wellbutrin)“It makes me see the shadow people, unfortunately.” In context ↗ Mood or psychiatric effects
- GLP-1 drugs (unspecified), Retatrutide“I wanted to lose some vanity pounds i picked up from lda but the glp-1 made me so tired for a few days.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“This was never a problem before the abilify appetite, so I started taking Retatrutide to counteract that” In context ↗ Side effects
- Retatrutide“Retatrutide has been overall bad for my quality of life. I can't access the mania I need to get through projects while I am on it. ... It makes me more tired, if anything.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I also experience post exertional malaise after active days
In context ↗ - Brain fog
I'm still experiencing severe brain fog relative to my healthy cognitive capacity
In context ↗ - POTS & dysautonomia
I get extremely low blood pressure and grey out constantly
In context ↗ - Headaches & migraine
I have atypical hemiplegic migraine with aura
In context ↗ - Sleep problems
About the same anxiety and insomnia
In context ↗ - Anxiety & low mood
I've had much less depression during my PEM when I can just radically accept the reality of it
In context ↗
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