ME/CFS
Severe → somewhat betterIll 3 years before improving or writing
Moderate-to-severe ME/CFS, somewhat better with low-dose naltrexone and aripiprazole
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
I'm moderate-to-severe ME, depending on the day.
In context ↗ - At worst: Severe
Moderate-to-severe or severe here, depending on which scale you use. ... I spend most of my time either in bed or on the living room couch
- Now: Somewhat better
It's not a giant boost in energy, as I'm nowhere near where I was when I was healthy, but I can definitely do about twice what I was able to do before ... ME/CFS moderate-to-severe here.
- Began after: mould or toxic exposure
My trigger was breathing in too much wildfire smoke.
In context ↗ - Says they never had: Mast cell (MCAS) & allergies
Never had covid or MCAS or EDS or whatever
Read from 93 of their posts and comments; links to the 33 this page draws on
Summary
A woman with ME/CFS since about 2018, triggered by wildfire smoke, who declined from mild to moderate-to-severe after two years of graded exercise, credits low-dose naltrexone and low-dose aripiprazole with more energy and less brain fog, plus CoQ10, D-ribose, inosine and pacing. The graded exercise left her permanently worse, never back to her level before it, while IVF put her at severe for a few months before she got back to baseline. She remained moderate-to-severe, using a power chair for outings, in 2026.
Ask Miruvor AI
What they tried
What they credit
Also tried
ivabradine (Corlanor)· Helped a lotdiclofenac· HelpedBRAT diet· HelpedReglan· Helpedacceptance therapy· Helpeddiltiazem· Helpedcannabis (high CBD)· HelpedGabapentin· HelpedGarmin Lily· HelpedAcetyl L-Carnitine· No changebeta blockers· No changeQuercetin· No changegraded exercise therapy (GET)· WorseMagnesium· WorseIVF· Much worseubrelvy· Not said
Their words about each treatment
- graded exercise therapy (GET) · Worse
GET makes every one of my symptoms worse. Every time a doc would push it on me, I'd exacerbate everything
In context ↗ - PACING · Helped
it's really really really really hard and takes a lot of practice. Been at it for 8 years and I'm still bad at it.
In context ↗ - CoQ10 · Helped
800mg CoQ10 when I wake up and again before going to bed. It reduces the intensity of my PEM
In context ↗ - Magnesium · Worse
Magnesium supplements made my fatigue worse.
In context ↗ - Acetyl L-Carnitine · No change
I was on it for over a year (Stanford CFS Center recommendation) and it never did anything for me
In context ↗ - low-dose Abilify · Helped a lot
I'm having some success with it! ... I can definitely do about twice what I was able to do before!
In context ↗ - Riboflavin · Helped
I added 400 mg of CoQ10 and 200mg of Riboflavin per day, and both have helped reduce my migraine intensity.
In context ↗ - diclofenac · Helped
It didn't do anything for my fatigue, and only did a little more than that for the migraines.
In context ↗ - BRAT diet · Helped
I switch to a BRAT diet: bananas, rice, applesauce, toast. ... It keeps things from getting worse while I wait for my stomach to calm down!
- low-dose naltrexone · Helped
It helps me! Not a ton but enough that it's worth continuing.
In context ↗ - Reglan · Helped
I take Reglan, which reduces my gastroparesis by a lot.
In context ↗ - ivabradine (Corlanor) · Helped a lot
Got my resting heart rate from around 140 down to about 70, it's awesome.
In context ↗ - IVF · Much worse
The whole process kicked my ass really hard ... this put me at solidly severe for a few months.
In context ↗ - beta blockers · No change
Metoprolol barely did anything for me, same with other beta blockers.
In context ↗ - acceptance therapy · Helped
For me, acceptance therapy has helped me handle it better.
In context ↗ - D-ribose · Helped
It took a really high dose in order to have any useful effect, but it makes my PEM less wretched.
In context ↗ - oxymatrine · Helped
oxymatrine increases my energy
In context ↗ - diltiazem · Helped
With ivabradine and diltiazem: resting heart rate 60-80, up to 100-110 with mild activity.
In context ↗ - cannabis (high CBD) · Helped
Cannabis, especially high CBD, helps me manage my pain and insomnia.
In context ↗ - Quercetin · No change
It didn't do much for me, but I'm not 100% sure I was taking the right type
In context ↗ - ubrelvy · Not said
ubrelvy for migraines
In context ↗ - Gabapentin · Helped
Gabapentin - reduces nerve pain and insomnia
In context ↗ - Inosine · Helped
Took about 2 weeks of fever and another 4-6 weeks of waiting before the extra energy kicked in, but it really made a difference!
In context ↗ - Garmin Lily · Helped
I do use it for relative calibration
In context ↗ - nattokinase and serrapeptase · Helped
I take nattokinase and serrapeptase which are enzymes that help bust microclots, and in the right dosages (it's different for everyone) they really help me.
In context ↗
Approaches: Anticoagulants · Antivirals · Other drugs and medicines · Pacing · Supplements
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2018 (approx) | ME/CFS began after breathing wildfire smoke; mild at firstMy trigger was breathing in too much wildfire smoke.In context ↗ | |
| 2020 (approx) | two years of graded exercise therapy made her worseI declined from mild to moderate-severe because of all the exercising.In context ↗ | |
| 2021-05 | low-dose Abilify roughly doubled what she could doI can definitely do about twice what I was able to do before!In context ↗ | Low-dose Abilify / aripiprazole |
| 2021-12 | IVF put her at very severe for six weeksI went from moderate to very severe for 6 weeksIn context ↗ | |
| 2022 (approx) | back to her moderate-to-severe baseline after IVFI did eventually get my baseline back.In context ↗ | |
| 2023-03 | severe crash after surgery and hospitalisationI'm in a severe crash now after a surgery and hospitalizationIn context ↗ | |
| 2026-08 | still moderate-to-severe; ambulatory at home, power chair for outingsME/CFS moderate-to-severe here. I am ambulatory around the houseIn context ↗ |
Adverse events
- Magnesium“Magnesium made things worse” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“The only negative side effect is that it gives me the munchies.” In context ↗ Side effects
- Graded exercise therapy (GET)“GET makes every one of my symptoms worse. Every time a doc would push it on me, I'd exacerbate everything” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“It's what happened to me when I did two years of graded exercise therapy, and I'm still not back to where I was before that.” In context ↗ Made symptoms worse
- “feeling like my body was actively shutting down” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
D-Ribose reduces my PEM
In context ↗ - Brain fog
After about a month of serious brain fog, my creativity is starting to come back!
In context ↗ - POTS & dysautonomia
Yup, have POTS and dysautonomia (and fibro) together with my ME.
In context ↗ - Sleep problems
Gabapentin - reduces nerve pain and insomnia
In context ↗ - Pain & fibromyalgia
Cannabis, especially high CBD, helps me manage my pain and insomnia.
In context ↗ - Headaches & migraine
My migraines also got worse with ME/CFS, though they're a different type.
In context ↗ - Gut problems
I take Reglan, which reduces my gastroparesis by a lot.
In context ↗ - Heart symptoms & palpitations
resting heart rate 100-120, up to 140-150 with mild activity
In context ↗ - Neuropathy & tingling
I use it for nerve pain, which for me is mostly chest pain.
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound then housebound with long COVID, now nearly back to normal after tirzepatide
Dew 60812 caught COVID-19 in March 2020 and was bedbound about half a year, then housebound for roughly two years with severe fatigue, brain fog and light sensitivity. They credit time, rifaximin (Xifaxan) for SIBO and later microdosed tirzepatide (Zepbound)…
-
Not enough detail to draw a path
Long COVID with 23 hours a day in bed, now much better; glutathione and antihistamines helped
Sandpiper 78792 developed long COVID in early 2023 after a January 2022 COVID infection, spending 23 hours a day in bed with fatigue, brain fog and insomnia. Glutathione briefly cleared fatigue in January 2025; antihistamines helped sleep, while a…
-
Bedridden then housebound with long COVID, now much better with pacing and LDN
They had ME/CFS from EBV since age 19 and were mild until COVID in February 2020 left them bedridden then housebound for years; exercise advice in 2021 disabled them further. Pacing, rest, low-histamine diet, supplements, LDN, semaglutide and peptides lifted…
-
Bedbound at times with long COVID, now nearly back to normal with low-dose naltrexone and pacing
A severe reaction to a Pfizer booster in June 2022 left her with neuro, POTS, gut and suspected mast-cell symptoms, plus crashes that could leave her bedbound. She credits low-dose naltrexone, pacing and gradual daily walking for improving to about 70% by…