ME/CFS
Moderate → much betterIll 6 years before improving or writing
Moderately severe ME/CFS with much time in bed, much better after LDN and Abilify
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 6 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I'm diagnosed with ME & am usually moderate, if that helps.
In context ↗ - At worst: Moderate
I went from moderately severe to mild/moderate with just LDN but it was rough for a while.
In context ↗ - Now: Much better
LDN gave me (most of) my life back years ago, but recently amitriptyline & slightly increasing my abilify nudged me up another 10%
In context ↗ - Began after: stress or burnout
I come from an emotionally & mentally abusive childhood, and my current theory is that it caused my epilepsy and (later) CFS
Read from 44 of their posts and comments; links to the 33 this page draws on
Summary
Had ME/CFS for about 12 years, moderately severe and spending much time in bed before low-dose naltrexone in 2018 gave them most of their life back. Each LDN dose increase brought three to five days of PEM-like symptoms. Low-dose Abilify, slowly raised to 0.7 mg, later made their PEM shorter and far less severe; amitriptyline plus a slight Abilify increase added another 10%. Compounded LDN cost $80 a month; a second COVID shot worsened their CFS, and LASIK left lasting side effects.
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What they tried
What they credit
Also tried
naturopath· Helpedgoing to bed earlier· Helpedstationary biking· Helpedlysine· Helpedwedge pillow· Helpedtherapist· Helpedacupuncture· No changetreatment for candida· No changecovid vaccine (2nd shot)· WorseLasik eye surgery· Worsesauerkraut / kimchi· Worseantihistamines· Much worseKetotifen· Not said
Their words about each treatment
- acupuncture · No change
I go to acupuncture every other week & it doesn’t really help me.
In context ↗ - LDN · Helped a lot
LDN gave me (most of) my life back.
In context ↗ - covid vaccine (2nd shot) · Worse
my overall CFS symptoms have been noticeably consistently worse. I'm convinced the vaccine messes with CFS
In context ↗ - Abilify · Helped a lot
Finally got to .7 & it changed my life, PEM-wise.
In context ↗ - Ketotifen · Not said
so my doc proposed Ketotifen ... Have decided to go for it.
In context ↗ - naturopath · Helped
I had a lot of success with a naturopath when I ran out of specialist to see
In context ↗ - treatment for candida · No change
they pushed for multiple rounds of treatment for candida (which did very little)
In context ↗ - going to bed earlier · Helped
Going to bed earlier was a slight, surprising help.
In context ↗ - cutting out dairy, sugar & alcohol · Helped
Cutting sugar certainly didn’t cure anything but brought me back to my baseline.
In context ↗ - stationary biking · Helped
have taken up stationary biking ... I find the exercise does wonders for my mental health (& cardio endurance)
In context ↗ - antihistamines · Much worse
Just got off a couple that weren’t meant to help with ME symptoms directly but we’re for the food intolerances I’ve developed because of ME. Made all of my ME symptoms much worse
In context ↗ - Lasik eye surgery · Worse
struggled with lasting side effect like nausea, light-headedness, dizziness and numbness in your hands ... its been 2 weeks & it’s really kicking my butt
In context ↗ - sauerkraut / kimchi · Worse
I started adding sauerkraut to a snack earlier this last week & am struggling with my energy being worse than normal.
In context ↗ - lysine · Helped
Lysine twice a day has cleared them up for the most part.
In context ↗ - amitriptyline · Helped
recently amitriptyline & slightly increasing my abilify nudged me up another 10%
In context ↗ - wedge pillow · Helped
I bought a wedge pillow (meant for acid reflux help) & it’s been a game changer.
In context ↗ - therapist · Helped
it took a therapist calling me out ... but I've seen a significant improvement in my mental health and sense of personal value
In context ↗
Approaches: Diet · Other drugs and medicines · Tricyclic antidepressants
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 6 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 |
|---|---|---|---|
| 2012 (about) | ME/CFS beginsI’ve had this for 10+ years so I know my body & the risksIn context ↗ | Not stated | |
| 2018 (before LDN) | moderately severe, much time in bedI went from moderately severe to mild/moderate with just LDNIn context ↗ | Moderate | |
| 2018 | low-dose naltrexone gave most of their life backLDN gave me (most of) my life back.In context ↗ | Mild | Low-dose naltrexone |
| 2021-07 | overall CFS symptoms worse after 2nd COVID shotmy overall CFS symptoms have been noticeably consistently worseIn context ↗ | Moderate | |
| 2022-03 | low-dose Abilify at 0.5 mg shortened PEMsit somewhat helps to shorten any PEM I might haveIn context ↗ | Mild | Low-dose Abilify / aripiprazole |
| 2024-04 | severe PEM after moving apartmentstriggered pretty severe PEMIn context ↗ | Moderate | |
| 2024-06 | lasting nausea, dizziness and numb hands after LASIKstruggled with lasting side effect like nausea, light-headedness, dizziness and numbness in your handsIn context ↗ | Moderate | |
| 2025-05 | amitriptyline and a higher Abilify dose added 10% functionrecently amitriptyline & slightly increasing my abilify nudged me up another 10%In context ↗ | Mild | Amitriptyline (Elavil) |
| 2026-10 | Abilify raised to 0.7 mg; PEM much shorter and milderIt wound up really helping with my PEM.In context ↗ | Mild | Low-dose Abilify / aripiprazole |
Adverse events
- Low-dose naltrexone“It took a few dosage increases to feel anything, but the adjustments in between are brutal.” In context ↗ Side effects
- COVID vaccination as treatment“my overall CFS symptoms have been noticeably consistently worse.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“.3mg hit me like a truck - exasserbated current symptoms and gave me some new ones.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“I was first prescribed the compounded tablet but kept having side effects, so I got off it.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I later tried the liquid and made it all the way (incrementally) to .6mg before I couldn't handle it again” In context ↗ Side effects
- Low-dose naltrexone“I'm on LDN and Abilify and experienced rough adjustment periods for both of them, more so for LDN.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I'm on LDN and Abilify and experienced rough adjustment periods for both of them” In context ↗ Side effects
- Low-dose naltrexone“I couldn't tolerate any dose the pill form.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I couldn't tolerate any dose the pill form.” In context ↗ Side effects
- Low-dose naltrexone“I went through really intense PEM-like symptoms ... for maybe 3-5 days. I had a splitting migraine” In context ↗ Made symptoms worse
- Low-dose naltrexone“It took me a few dosing adjustments - with some crappy side effects during each adjustment” In context ↗ Side effects
- Low-dose naltrexone“i had a headache, some nausea, and felt like i was getting sick” In context ↗ Side effects
- H1 antihistamines (unspecified)“Made all of my ME symptoms much worse (worsening fatigue)” In context ↗ Made symptoms worse
- H1 antihistamines (unspecified)“plus all the side effects of antihistamines (sore throat, nausea, dizziness)” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“struggled with lasting side effect like nausea, light-headedness, dizziness and numbness in your hands? ... its been 2 weeks & it’s really kicking my butt.” In context ↗ Side effects
- Low-dose naltrexone“I had a bit of a rough adjustment when starting (felt drained & had migraines)” In context ↗ Side effects
- Acupuncture“after my 3rd appointment went through what I later was told was an “energy withdrawal” that usually only lasts 3 days.” In context ↗ Side effects
- COVID vaccination as treatment“I do both shots together every year & the pain usually hits me in the middle of the night” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“There was an adjustment period every time I increased, so I’d go back down.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“Worsening of symptoms & new symptoms that I’ve never had before. I’d titrate up, tolerate it well, then go up again a couple of weeks later as recommended & not do well.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
If I want to do what makes me happy, I have to accept that the next day will suck
In context ↗ - Sleep problems
while waking up still sucks, it sucks just a little less
In context ↗ - Brain fog
helped with my ability to focus, if that helps
In context ↗ - Breathlessness
I learned that my oxygen stays tank when I’m fully reclined & the pillow helps
In context ↗ - POTS & dysautonomia
light-headedness, dizziness
In context ↗ - Neuropathy & tingling
numbness in your hands
In context ↗
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