ME/CFS
Very severe → no benefitIll for 5 yearsNeeds ongoing treatment
Bedridden with ME/CFS, no improvement after LDN and Abilify
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill for
- 5 years
- Last post
- Mar 2026
In their words
- Condition: ME/CFS
I have severe ME/CFS and OCD.
In context ↗ - At worst: Very severe
I'm bedridden and 100% dependent on others. I can't even hold my phone without a pillow.
In context ↗ - Now: No benefit
What frightens me the most is that everything seems to be getting worse every single day.
In context ↗ - Began after: COVID
I developed severe ME/CFS and dysautonomia after COVID.
Read from 92 of their posts and comments; links to the 33 this page draws on
Summary
Stefan Arce, in Mexico, fell ill after COVID in 2021 and became bedridden in 2023; he later needed a J tube and weighed about 28 kg. A single haloperidol injection in May 2023 triggered a lasting relapse with tardive dyskinesia. He tried LDN, low-dose Abilify, IVIG and SSRIs; Abilify and the SSRIs left movement and other side effects. He stayed bedridden on Ativan and zolpidem, worsening daily.
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What they tried
Also tried
IV saline· Helped a lotZolpidem (Ambien)· Helped · wore offAtivan (lorazepam)· Helpedpacing and a strict predictable routine· Helpedanticonvulsants· No changeCBD· Worsefiber· WorseTPN, then J-tube feeding with Peptamen 1.5· Worsenutritional supplements· WorseSSRIs (ISRs)· WorseMeditation, yoga, breathwork· WorseAbilify (LDA)· Much worsehaloperidol· Much worseLDN· Not saidIVIG· Not saiddiet to avoid constipation· Not said
Their words about each treatment
- LDN · Not said
probé ncljso LDN y LDA
In context ↗ - Abilify (LDA) · Much worse
But Abilify didn't help me, it just left me with tardive dyskinesia and akathisia.
In context ↗ - Zolpidem (Ambien) · Helped
I have to take 40 mg, it's a lot, but if not I don't sleep and the effect doesn't last long.
In context ↗ - Ativan (lorazepam) · Helped
I take lorazepam and zolpidem. They calm my nervous system a little, but they sedate me, flatten my emotions, and cause hypotension.
In context ↗ - diet to avoid constipation · Not said
Having to watch my diet to avoid constipation, repressing food cravings.
In context ↗ - pacing and a strict predictable routine · Helped
Pacing: not a whim, but the only thing keeping me alive in this fragile state.
In context ↗ - CBD · Worse
I had bad results with cbd
In context ↗ - fiber · Worse
I can't tolerate fiber
In context ↗ - anticonvulsants · No change
and anticonvulsants don’t work
In context ↗ - TPN, then J-tube feeding with Peptamen 1.5 · Worse
Just putting my enteral feeds through my J tube causes collapses
In context ↗ - nutritional supplements · Worse
That guy screwed me, a lot of supplements with pem
In context ↗ - IV saline · Helped a lot
It's the only thing that made me better
In context ↗ - SSRIs (ISRs) · Worse
ISRs left me with terrible side effects: dyskinesia, akathisia, and a thousand more.
In context ↗ - haloperidol · Much worse
In May 2023, I was given a single dose of haloperidol, and that’s when I had a severe relapse.
In context ↗ - Meditation, yoga, breathwork · Worse
Even thinking or trying to meditate makes symptoms worse.
In context ↗
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 23 months 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 |
|---|---|---|---|
| 2021 | Illness began after COVID, with worsening OCDIn 2021, post-COVID, I was already feeling something strange, an increase in my OCDIn context ↗ | Not stated | |
| May 2023 | Severe relapse after a single haloperidol injection; became bedridden and malnourishedIn May 2023, I was given a single dose of haloperidol, and that’s when I had a severe relapse.In context ↗ | Very severe | |
| 2025-12-15 | IV saline gave some relief but he stayed bedboundIt's the only thing that made me betterIn context ↗ | Very severe | IV saline and fluids |
| 2025-12-16 | Left without Ativan for a weekend; got much worsethey left me without Ativan because they forgot to refill the medication, and I got much worseIn context ↗ | Very severe | |
| 2026-03-05 | GJ tube changed and Port-a-Cath removed; baseline worsenedIm very very overwhelmed post my j tube change my baseline was go to shitIn context ↗ | Very severe | |
| 2026-03 | Still bedridden and worsening, living on a rigid routine to limit brain fogI am so severe that sometimes I cannot even reach my earplugs with my own arm when I need them.In context ↗ | Very severe |
Adverse events
- Zolpidem (Ambien), Lorazepam (Ativan)“I cannot tolerate benzodiazepines because they cause asphyxia and bronchoaspiration.” In context ↗ Side effects
- Zolpidem (Ambien), Lorazepam (Ativan)“Benzos makes my Dysautonomia and fatigue weakness stronger” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“I already took lorazepam and it doesn't help me. I think it hurts me more because of the weakness.” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“But the fog it leaves me with is horrible. I can't think about anything or move” In context ↗ Side effects
- Lorazepam (Ativan)“Ativan makes me feel sedated during the day.” In context ↗ Side effects
- Zolpidem (Ambien), Lorazepam (Ativan)“they sedate me, flatten my emotions, and cause hypotension” In context ↗ Low blood pressure or fainting
- Zolpidem (Ambien), Lorazepam (Ativan)“Anxiolytics significantly worsen my brain fog” In context ↗ Side effects
- Haloperidol (Haldol)“I developed extrapyramidal symptoms, became bedridden, and then developed tardive dyskinesia.” In context ↗ Side effects
- Haloperidol (Haldol)“Since a haloperidol injection in 2023, everything has worsened.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“But Abilify didn't help me, it just left me with tardive dyskinesia and akathisia.” In context ↗ Side effects
- Antidepressants (unspecified)“Probably much worse post SSRI” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“ISRs left me with terrible side effects: dyskinesia, akathisia, and a thousand more.” In context ↗ Side effects
- Antidepressants (unspecified)“Yo también lo tengo y empezó con ISRs” In context ↗ Side effects
- Antidepressants (unspecified)“P todos los antidepresivos me han dado males” In context ↗ Side effects
- CBD (cannabidiol)“I had bad results with cbd” In context ↗ Side effects
- Fiber and fiber supplements“I can't tolerate fiber” In context ↗ Gut side effects
- “That guy screwed me, a lot of supplements with pem” In context ↗ Made symptoms worse
- Tube feeding (NG, NJ, PEG, TPN)“Just putting my enteral feeds through my J tube causes collapses” In context ↗ Made symptoms worse
- Tube feeding (NG, NJ, PEG, TPN)“Feeding, for me, is not an ordinary or simple act. It’s a process that hurts.” In context ↗ Made symptoms worse
- Tube feeding (NG, NJ, PEG, TPN)“the problem is severe PTSD that each feeding leaves me in meltdown and I get worse” In context ↗ Made symptoms worse
- Tube feeding (NG, NJ, PEG, TPN)“I also couldn’t tolerate the noise of the feeding pump; it had to be soundproofed, and I still lost more weight.” In context ↗ Made symptoms worse
- Tube feeding (NG, NJ, PEG, TPN)“Im very very overwhelmed post my j tube change my baseline was go to shit” In context ↗ Made symptoms worse
- Tube feeding (NG, NJ, PEG, TPN)“I got infected when I had a TPN.” In context ↗ Other
- “Vaccine makes my worst” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“Even thinking or trying to meditate makes symptoms worse.” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“Breathing exercises can activate me more” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I suffer from severe PEM (post-exertional malaise)
In context ↗ - Brain fog
the brain fog is severe and disabling
In context ↗ - POTS & dysautonomia
I have severe dysautonomia and myalgic encephalomyelitis
In context ↗ - Sleep problems
Severe insomnia
In context ↗ - Pain & fibromyalgia
I also suffer from severe pain
In context ↗ - Headaches & migraine
persistent burning and pressure sensation inside my head
In context ↗ - Gut problems
I'm struggling with dysphagia, bowel dysfunction
In context ↗ - Light & noise sensitivity
extreme sensory hypersensitivity to sound, light, touch, and movement
In context ↗ - Breathlessness
I also experience shortness of breath, especially in the evenings
In context ↗ - Heart symptoms & palpitations
A lot of bradycardia
In context ↗ - Muscle weakness
My muscles are super wasted from so much looping.
In context ↗ - Neuropathy & tingling
“Zaps” in my head, like internal electrical discharges
In context ↗ - Anxiety & low mood
I'm struggling with ME/CFS anxiety
In context ↗