ME/CFS
Mild → no benefitIll for 12 years
Deep fatigue after mono, later ME/CFS; hyperbaric oxygen and other tries gave no help
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill for
- 12 years
- Last post
- Jan 2022
In their words
- Condition: ME/CFS
I figured I’d go to a CFS expert and get diagnosed because it just had to be the thing I had
In context ↗ - At worst: Mild
First had mono in 2009 in HS and never regained my same level of fitness after. Felt a deep fatigue in the core of my being.
In context ↗ - Now: No benefit
I’m on antivirals for reactivated EBV and HHV-6 but I’m still struggling.
In context ↗ - Began after: glandular fever or EBV
First had mono in 2009 in HS
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
He had mono in 2009 in high school and never regained his previous fitness, feeling a deep fatigue ever since. Diagnosed with ME/CFS about 12 years later, he was on antivirals for reactivated EBV and HHV-6 but still struggling. Hyperbaric oxygen (40 sessions), photobiomodulation laser, neurofeedback and a $5,000 Amen Clinic SPECT scan did nothing, and he felt hyperbaric oxygen may have left him worse and anhedonic.
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What they tried
Also tried
weed· HelpedPhotobiomodulation laser· No changeNeurofeedback· No changeAmen Clinic / SPECT scan· No changeLDN· WorseHyperbaric oxygen· Worsekratom· Not saidantivirals· Not said
Their words about each treatment
- weed · Helped
Weed always powered up my body.
In context ↗ - kratom · Not said
I was smoking a lot of weed or taking kratom and telling myself I’m good with being alone.
In context ↗ - antivirals · Not said
I’m on antivirals for reactivated EBV and HHV-6 but I’m still struggling.
In context ↗ - LDN · Worse
I quit it, because I felt weird on it
In context ↗ - Hyperbaric oxygen · Worse
Hyperbaric oxygen (for which I did 40 treatments or so) did absolutely nothing for me. If anything I think I felt worse, I felt a strange amount of anhedonia after.
In context ↗ - Photobiomodulation laser · No change
Photobiomodulation laser for which I did 3 months of treatment also did absolutely nothing for me.
In context ↗ - Neurofeedback · No change
Neurofeedback did absolutely nothing for me.
In context ↗ - Amen Clinic / SPECT scan · No change
Going to the Amen Clinic for 5 grand and a SPECT scan did absolutely nothing for me.
In context ↗
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 |
|---|---|---|
| 2009 | Mono in high school; never regained previous fitnessFirst had mono in 2009 in HS and never regained my same level of fitness after.In context ↗ | Mild |
| 2021-12 | Diagnosed with ME/CFS after 12 years; on antivirals, still strugglingBut then finally this year (so 12 years later) I figured I’d go to a CFS expert and get diagnosedIn context ↗ | Mild |
Adverse events
- Low-dose naltrexone“I quit it, because I felt weird on it” In context ↗ Side effects
- Hyperbaric oxygen (HBOT)“did absolutely nothing for me. If anything I think I felt worse, I felt a strange amount of anhedonia after.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Anxiety & low mood
it’s been really hard having CFS and anhedonia and being depressed about fatigue
In context ↗