ME/CFS with memory loss, now much better and back to work after LDN and vitamin C
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 19 months
- Last post
- Nov 2022
In their words
- Condition: ME/CFS
I've been coping with EBV/mononucleosis-indiced CFS for quite a while, basically post-COVID since April 2021.
In context ↗ - At worst: Moderate
helped bring me back to work and exercising regularly
In context ↗ - Now: Much better
helped bring me back to work and exercising regularly. I still have crashes here and there but life is way better since I started it.
In context ↗ - Began after: glandular fever or EBV
I've been coping with EBV/mononucleosis-indiced CFS for quite a while, basically post-COVID since April 2021.
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
They developed EBV/mononucleosis-induced CFS, dating it from April 2021. Finding a good low-dose naltrexone dose plus high-dose vitamin C brought them back to work and regular exercise, though crashes continued. Memory loss persisted, though phosphatidylcholine helped long-term recall; they stopped it because it brought on depressive recall, and sinus pressure with post-nasal drip remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped a lot
figuring out a good LDN dose (coupled with high-dose vitamin C) helped bring me back to work and exercising regularly
In context ↗ - Lion's Mane · Not said
I've tried a lot of things over long periods of time: Lion's Mane, NooTropics Curcumin, R-Alpha Lipoic Acid, Alpha Brain, Phosphatidylcholine, Phosphatidylserine
In context ↗ - Phosphatidylcholine · Helped
So phosphatidylcholine helped with long-term memory - I had better memory of stuff that happened in the past 2 years quite well.
In context ↗ - sativa/indica (THC) · Helped
the only times that I have really good memory recall is taking X mgs of sativa/indica (THC), which might only last 4 hours
In context ↗ - Azelastine · Worse
sometimes even Flonase or Azelastine
In context ↗ - Doxycycline · Helped
Doxycycline (an antibiotic, this helped but they won't prescribe it again for me)
In context ↗ - sinus rinses · Helped
it provides relief but not a cure
In context ↗
Approaches: 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 |
|---|---|---|---|
| April 2021 | EBV/mononucleosis-induced CFS began after COVIDbasically post-COVID since April 2021In context ↗ | Moderate | |
| 2022-06-23 | back to work and exercising regularly, with crashes here and therefiguring out a good LDN dose (coupled with high-dose vitamin C) helped bring me back to work and exercising regularlyIn context ↗ | Mild | Low-dose naltrexone |
| 2022-11-29 | still battling sinus pressure and post-nasal drip; memory still poorI've been battling my symptoms one at a timeIn context ↗ | Mild |
Adverse events
- Phosphatidylcholine“Unfortunately though, high doses of choline can cause depression ... I'd spend a lot of time dwelling on shit that made me sad in the past.” In context ↗ Mood or psychiatric effects
- Azelastine (Astepro), Fluticasone nasal spray (Flonase, Avamys)“Certain triggers make my symptoms worse, like perfume, exercising, sometimes even Flonase or Azelastine.” In context ↗ Made symptoms worse
- Azelastine (Astepro)“Certain triggers make my symptoms worse, like perfume, exercising, sometimes even Flonase or Azelastine.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
I have awful memory recall, my imagination is shot
In context ↗ - Post-exertional malaise
I still have crashes here and there
In context ↗ - Headaches & migraine
a deep, constant nagging pressure at the bridge of my nose
In context ↗
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