ME/CFS
Severe → much betterIll 2 years before improving or writingNeeds ongoing treatment
ME/CFS with a crutch indoors and 16-18 hours of sleep, much better on pyridostigmine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I've been out of work since Sep 2024 with the ME/CFS version of Long Covid.
In context ↗ - At worst: Severe
At my worst, I slept about 16-18 hours a day and used a crutch to even walk around my house due to leg weakness.
In context ↗ - Now: Much better
After I found meds that took me to mild and the brain fog wasnt really an issue, I was very fortunate to return part time to my previous job after being gone almost 2 years.
In context ↗ - Began after: a vaccination
I supposedly have a lighter version of long covid from the vaccine, which triggered an MS relapse
- Says they never had: POTS & dysautonomia
I do not have POTs or EDS.
Read from 46 of their posts and comments; links to the 22 this page draws on
Summary
Acorn 38534 fell ill with the ME/CFS form of long COVID around September 2024, and at her worst slept 16-18 hours a day and used a crutch indoors. Mitochondrial supplements and Augmented NAC with lumbrokinase gave small gains, while B-complex/MIC injections helped enormously; pyridostigmine in early 2026 brought immediate, large relief and a return to part-time work from home, though pain remains.
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What they tried
What they credit
compounded b complex + MIC injection· Helped a lotIV doxycycline and oral antibiotics· Helped a lotPyridostigmine· Helped a lot · maininfared sauna banket· HelpedAcetyl L carnitine· HelpedMitopure (urolithin A)· HelpedPQQ· HelpedCoQ10· Helpedovernight resting heart rate and HRV pacing· HelpedAugmented NAC· Helped · mainlumbrokinase· Helped
Also tried
meal kits· Helpedfish oil· Helpeddaily baby aspirin· Helpedbirth control (seasonique)· HelpedMelatonin· HelpedWonder Sleep by PlantPeople· Helpedsteroid for the MS· HelpedNAC (regular)· No changemethylated oral supplements· No changestrength training· Worsesurgery to remove endometriosis· Not saidhysterectomy· Not saidGabapentin· Not saidlow dose naltrexone· Not said
Their words about each treatment
- infared sauna banket · Helped
I've been using an infared sauna banket for a couple weeks now. ... I do feel like it helps recovery
In context ↗ - Acetyl L carnitine · Helped
Acetyl L carnitine - present in mitochondria inner membrane, used in fatty acid metabolism ... this stack in the morning seems to get me a couple extra functional hours most days
In context ↗ - Mitopure (urolithin A) · Helped
Mitopure is stupid expensive, but I notice the most difference from taking it than any other singular supplement.
In context ↗ - PQQ · Helped
PQQ - supports making new mitochondria ... this stack in the morning seems to get me a couple extra functional hours most days
In context ↗ - CoQ10 · Helped
CoQ10 - electron carrier in energy making process ... this stack in the morning seems to get me a couple extra functional hours most days
In context ↗ - NAC (regular) · No change
I felt no difference on regular NAC previously though, so I'm hopeful.
In context ↗ - compounded b complex + MIC injection · Helped a lot
My doc has me on a compounded b complex + MIC injection. Helps enormously.
In context ↗ - strength training · Worse
I kept trying to do even light workouts and then needing a week to rest.
In context ↗ - overnight resting heart rate and HRV pacing · Helped
I've dropped my resting heart rate 10 bpm and gotten more consistent energy just by what I've learned here.
In context ↗ - meal kits · Helped
By having it shipped I found that not having to plan, grocery shop, etc saved enough energy to be pretty helpful.
In context ↗ - fish oil · Helped
I have lowered my resting HR by increasing my fish oil and adding daily baby aspirin.
In context ↗ - birth control (seasonique) · Helped
Tried every birth control. The 3 month one helped the most
In context ↗ - surgery to remove endometriosis · Not said
At 19 I had surgery to remove endometriosis and adenomyosis. Was mildly helpful but not really
In context ↗ - hysterectomy · Not said
at 21, I was able to get a hysterectomy
In context ↗ - methylated oral supplements · No change
we know I have the 50% mthfr gene so I took methylated oral supplements ... oral b vitamins do nothing for me
- Gabapentin · Not said
Gabapentin has fewer side effects and is easier to come off of in my experience
In context ↗ - Augmented NAC · Helped
My doctor said she saw good research on it so I gave it a shot. My improvement really started when I did.
In context ↗ - lumbrokinase · Helped
I am doing lumbrokinase (same function as nattokinase, I'm just soy sensitive so natto didnt sit well) with the NAC and am trending upwards
In context ↗ - IV doxycycline and oral antibiotics · Helped a lot
I did massive IV doses of doxycycline for months, followed by an oral regimen of 4 different antibiotics ... it was the single most effective treatment for me
In context ↗ - Pyridostigmine · Helped a lot
But about a month ago I finally got Pyridostigmine and it is an immediate, huge relief.
In context ↗ - Melatonin · Helped
Melatonin helped me fall asleep, but I struggled with waking up around 2 am for a couple hours and being super groggy.
In context ↗ - Wonder Sleep by PlantPeople · Helped
I like the supplement Wonder Sleep by PlantPeople instead. ... then I started sleeping through the night
In context ↗ - low dose naltrexone · Not said
I use it in combination with low dose naltrexone, but I had been on the ldn for a year or more by itself without these impacts.
In context ↗ - steroid for the MS · Helped
All other symptoms responded well to steroid for the MS
In context ↗
Approaches: POTS medication · Alternative therapies · Amino acids and carnitine · Antibiotics · Anticoagulants · Pacing · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| September 2024 | ME/CFS form of long COVID; out of work, sleeping 16-18 hours, crutch indoorsI've been out of work since Sep 2024 with the ME/CFS version of Long Covid.In context ↗ | Severe | |
| February 2025 | mitochondrial supplement stack added functional hoursthis stack in the morning seems to get me a couple extra functional hours most days. And even down days arent as bad.In context ↗ | Moderate | |
| early 2025 | compounded B-complex + MIC injections helped cognition and energyseveral other supplements/meds had helped me improve to about a 4 or 5 before pyridostigmineIn context ↗ | Moderate | Methylation support (unspecified) |
| late 2025 | Augmented NAC plus lumbrokinase, sleep down to 12 hoursAugmented NAC and lumbrokinase for the last several months have been making a difference and my sleep is down to 12 hours. Able to decently function for like 4-5 hours.In context ↗ | Mild | NAC (N-acetylcysteine) |
| April 2026 | pyridostigmine gave immediate relief; returning to part-time workBut about a month ago I finally got Pyridostigmine and it is an immediate, huge relief.In context ↗ | Mild | Mestinon / pyridostigmine |
| October 2026 | working part time from home, still painfulI work mostly mid-day 10 am - 2:30ish, but with flexibility to adjust that as needed ... I have a lot of painIn context ↗ | Mild |
Adverse events
- Doxycycline (Vibramycin)“With the initial big doses it was miserable. Joint pain, so tired, headache, etc.” In context ↗ Herx / die-off reaction
- Mestinon / pyridostigmine“So on my first attempt at the full dose I had pretty bad cramping.” In context ↗ Gut side effects
- Melatonin“Melatonin helped me fall asleep, but I struggled with waking up around 2 am for a couple hours and being super groggy.” In context ↗ Side effects
Symptoms mentioned
Brain fogFlu-like symptomsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
But the pem pattern fits.
In context ↗ - Brain fog
the brain fog wasnt really an issue
In context ↗ - Sleep problems
my sleep is down to 12 hours
In context ↗ - Pain & fibromyalgia
I have a lot of pain
In context ↗ - Muscle weakness
used a crutch to even walk around my house due to leg weakness
In context ↗ - Heart symptoms & palpitations
even sitting still my HR would be around 90 for no reason
In context ↗ - Flu-like symptoms
I noticed I didnt have the innate sick feeling
In context ↗ - Headaches & migraine
Joint pain, so tired, headache, etc.
In context ↗
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