ME/CFS
Severe → no benefitIll for 15 yearsNeeds ongoing treatment
Moderate/severe ME/CFS, days in bed; tried low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 15 years
- Last post
- May 2023
In their words
- Condition: ME/CFS
I learned about MECFS from a colleague that also had it so I did my research and took it to my doctor who finally diagnosed me when I was 25.
In context ↗ - At worst: Severe
I'm now 30 and am moderate/severe, I spend my days in bed. I can't do much else.
In context ↗ - Now: No benefit
I'm so careful with mine, I don't crash that often. But I've only got sicker and sicker....
In context ↗ - Began after: glandular fever or EBV
I got sick with what I now believe to be mono when I was about 15
Read from 10 of their posts and comments; links to the 6 this page draws on
Summary
Fell ill at about 15 with what they believe was mono, followed by recurring tonsil infections, depression and mounting exhaustion. They were diagnosed with ME/CFS at 25, lost their job and never worked again; by 30 they were moderate/severe and spending their days in bed. Low-dose naltrexone in 2021 brought some improvements but caused severe nausea and fainting, leaving them with a hiatus hernia and H. pylori and ongoing nausea.
Ask Miruvor AI
What they tried
Also tried
pacing· Helpedantibiotics· No changeLDN· WorseGET· Not saidanti nausea medication· Not saidantibiotics for H. Pylori· Not saidPPI medication· Not said
Their words about each treatment
- GET · Not said
Oh shit! So I shouldn't be doing this? No wonder I'm struggling to do it!
In context ↗ - antibiotics · No change
no amount of antibiotics helped
In context ↗ - pacing · Helped
I've been doing ok recently, relatively level, by making sure I don't over do it. ... I'm so careful with mine, I don't crash that often.
- LDN · Worse
I started taking LDN the summer of 2021 and was having side effects of some pretty bad nausea, like 'couldn't eat or drink for days nausea' everytime I upped my dose.
In context ↗ - anti nausea medication · Not said
on the phone to my doctor most weeks trying different anti nausea medication
In context ↗ - antibiotics for H. Pylori · Not said
We were able to treat the H. Pylori with 2 sets of antibiotics (this was hell as antibiotics make you.... nauseous!
In context ↗ - PPI medication · Not said
I'll be on PPI medication for the rest of my life for the hiatus hernia
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 | After |
|---|---|---|---|
| age 15 | Illness they believe was mono, then repeated tonsil infectionsI got sick with what I now believe to be mono when I was about 15, seemed to recover, but then had numerous tonsil infections every other month.In context ↗ | Mild | |
| after university, started working | Decline sped up in stressful jobsAfter I finished uni and started working, things started going down hill much more rapidly.In context ↗ | Mild | |
| age 25 | Diagnosed with ME/CFS, signed off work and made redundantIt felt like I was killing myself trying to hold down a job.In context ↗ | Moderate | |
| November 2021 | At 30, moderate/severe and bedboundI'm now 30 and am moderate/severe, I spend my days in bed. I can't do much else.In context ↗ | Severe | |
| December 2021 | Hospitalised with fainting while on LDN, then hiatus hernia and H. pyloriBy December 2021 I was in and out of hospital as I was fainting due to being unable to eat or drink.In context ↗ | Severe | Low-dose naltrexone |
| May 2023 | Still nauseous most days, lifelong PPI medicationI'll be on PPI medication for the rest of my life for the hiatus hernia and I still struggle most days with bits of nausea.In context ↗ | Severe |
Adverse events
- Graded exercise therapy (GET)“Oh shit! So I shouldn't be doing this? No wonder I'm struggling to do it! Fuck sake!” In context ↗ Made symptoms worse
- Low-dose naltrexone“I started taking LDN the summer of 2021 and was having side effects of some pretty bad nausea, like 'couldn't eat or drink for days nausea' everytime I upped my dose.” In context ↗ Gut side effects
- Low-dose naltrexone“By December 2021 I was in and out of hospital as I was fainting due to being unable to eat or drink.” In context ↗ Low blood pressure or fainting
- Low-dose naltrexone“By December 2021 I was in and out of hospital as I was fainting due to being unable to eat or drink.” In context ↗ ER visit
- Low-dose naltrexone“The LDN had caused me to have a hiatus hernia and woken up a bug living in my stomach lining called H. Pylori” In context ↗ Other
- Low-dose naltrexone“I did, and my stomach is permanently damaged.” In context ↗ Gut side effects
- Antibiotics (unspecified)“antibiotics make you.... nauseous!” In context ↗ Gut side effects
- Low-dose naltrexone“For me, it was a feeling of constant debilitating nausea” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
it was a feeling of constant debilitating nausea
In context ↗ - Anxiety & low mood
doctors put my tiredness down to depression and anxiety, which I did have
In context ↗ - Flu-like symptoms
numerous tonsil infections every other month
In context ↗