ME/CFS brain fog, much better with Equilibrant and low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 4 years
- Last post
- Jan 2022
In their words
- Condition: ME/CFS
I've never been as severely ill as you were
In context ↗ - At worst: Mild
physically my fatigue has been manageble, I could even play a full game of soccer, but the brain fog impaired me from working or having a social live. I barely managed to graduate from University and crashed hard afterwards.
In context ↗ - Now: Much better
I also had massive improvements on ldn. I've been on 4.5mg for a while now, just before bed, and I guess I've kind of plateaued.
In context ↗ - Began after: nothing they could name
It started after a trip to Southeast Asia, after which I had rare occurences of brain fog, but it was manageable.
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Sequoia 31056, in the Netherlands, dated the illness to a Southeast Asia trip; brain fog worsened and mental functioning declined rapidly after a Kenya trip illness, leaving them unemployed for nearly two years. Equilibrant helped within about two months despite crashes on each dose increase, and low-dose naltrexone gave massive improvement before plateauing. A COVID infection in late 2021 passed fine.
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What they tried
What they credit
Their words about each treatment
- Guardia Lamblia eradication · No change
They did find Guardia Lamblia about 1.5 years after Kenya, but eradicating it didn't do a lot for me
In context ↗ - equilibrant · Helped
After 2 months now I'm quite confident that this stuff is helping me quite a bit as well
In context ↗ - Inosine · Helped
I've also been taking Inosine now for 1.5 weeks and since then I've been feeling emotions that I haven't been able to feel for a long time.
In context ↗ - ldn · Helped a lot
I also had massive improvements on ldn. I've been on 4.5mg for a while now, just before bed, and I guess I've kind of plateaued.
In context ↗ - aspirin · Not said
I was adviced to take one aspirin a day, which acts as a blood thinner. Couldn't tell you if it made a difference
In context ↗
Approaches: Antivirals
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 |
|---|---|---|---|
| onset | Illness began after a Southeast Asia trip with occasional brain fog while doing a mastersIt started after a trip to Southeast Asia, after which I had rare occurences of brain fog, but it was manageable.In context ↗ | Mild | |
| 2 years after the Southeast Asia trip | Fell ill after a Kenya trip; mental functioning then declined rapidlyafter which I fell ill for a couple of weeks with swollen lymph nodes in my neck, and night sweating for maybe 1-2 months. After that my mental functioning started declining rapidly.In context ↗ | Mild | |
| 2021, before starting equilibrant | Unemployed for nearly two years, brain fog making them useless though physical fatigue manageableI have been unemployed since. That's nearly 2 years now. ... the brain fog still renders me completely uselessIn context ↗ | Mild | |
| 2021-05-20 | Able to do some programming and studying again on equilibrantSince starting equilibrant I've been able to do some programming and studying, which I havent been able to do for a while, so that's hopefull!In context ↗ | Mild | Oxymatrine / Equilibrant |
| 2022-01-23 | Massive improvement on low-dose naltrexone, then plateauedI also had massive improvements on ldn. I've been on 4.5mg for a while now, just before bed, and I guess I've kind of plateaued.In context ↗ | Mild | Low-dose naltrexone |
Adverse events
- Oxymatrine / Equilibrant“every time I upped my dose, I had quite a bad crash with worsening of all symptoms, before improving.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
the brain fog still renders me completely useless
In context ↗ - Post-exertional malaise
the crashes that I've been having recently are mainly because I've been trying to do too much lately
In context ↗ - Flu-like symptoms
I fell ill for a couple of weeks with swollen lymph nodes in my neck
In context ↗ - Temperature regulation
night sweating for maybe 1-2 months
In context ↗
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