ME/CFS for seven years, worst crash, improved with brain training then relapsed
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 years
- Last post
- Nov 2022
In their words
- Condition: ME/CFS
I have had CFS for about 7 years
In context ↗ - At worst: Moderate
usually only leaving the house one or two times a week
In context ↗ - Now: Relapsed
I was in remission for a few months until a few weeks ago, when a bunch of stuff happened at once including a procedure done on my neck with general anesthesia and I relapsed.
In context ↗ - Began after: stress or burnout
It did make me realize that I probably have CFS because of early emotional trauma
Read from 9 of their posts and comments; links to the 6 this page draws on
Summary
Plover 41226 had CFS for about seven years, which they linked to early emotional trauma, and spent the first years treating Lyme, Babesia and mould. Moving to a desert city in 2019, pacing and Nexavir helped; brain training was a big part of a remission lasting a few months, and prolotherapy for CCI brought about two weeks of remission. In late 2022 a neck procedure and family stress triggered their worst crash; with brain training they reported about 75% recovery.
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What they tried
What they credit
Also tried
Their words about each treatment
- treated Lyme and Babesia and mold · Not said
The first two years I treated Lyme and Babesia and mold
In context ↗ - injectable peptides · Not said
but I started taking injectable peptides
In context ↗ - moved to a bigger city in the desert · Helped
I moved to a bigger city in the desert and I think I benefitted from the lack of mold
In context ↗ - pacing · Helped
Happiness along with pacing helped a ton.
In context ↗ - Nexavir · Helped
I also started taking Nexavir that year which is an amazing drug.
In context ↗ - brain training · Helped a lot
A big part of how I got into remission the first time was through brain training.
In context ↗ - dealing with old trauma · Helped
all along I was dealing with old trauma and habits that stemmed from the trauma
In context ↗ - prolotherapy treatments in my spine and neck · Helped
after the second neck treatment felt in remission for about two weeks
In context ↗ - collagen · Helped
I took some collagen and it helped!
In context ↗ - supplements from the Cusack protocol · Helped
I do see a difference if I keep up with supplements (I do one or two supplements from the Cusack protocol)
In context ↗
Approaches: Antivirals · Brain retraining · Mould avoidance · Pacing · Trauma & somatic work
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 3 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 |
|---|---|---|---|
| 2015 | onset of CFSI have had CFS for about 7 yearsIn context ↗ | Not stated | |
| 2019 | moved to a desert city, accepted illness, pacingThe fourth year (2019) I moved to a bigger city in the desert and I think I benefitted from the lack of moldIn context ↗ | Moderate | Pacing and the energy envelope |
| 2021 | brief remission after second neck prolotherapyafter the second neck treatment felt in remission for about two weeksIn context ↗ | Near normal | |
| 2022 | few months of remissionI was in remission for a few months until a few weeks agoIn context ↗ | Near normal | |
| 2022-11 | relapse after neck procedure and family stressthe worst crash I’ve ever hadIn context ↗ | Severe | |
| 2022-11-21 | about 75% of the way back using brain trainingI’ve made about 75% progress in coming back doing the brain training though.In context ↗ | Mild |
Adverse events
- “I was in remission for a few months until a few weeks ago, when a bunch of stuff happened at once including a procedure done on my neck with general anesthesia and I relapsed” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
recently felt like I was in or close to remission (no PEM, could handle stress
In context ↗ - Anxiety & low mood
being in the same city as my mom again has brought up a lot of fear
In context ↗
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