ME/CFS left unable to leave home or walk, much better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- May 2019
In their words
- Condition: ME/CFS
Mono in March 2012. CFS diagnosis in Nov 2012.
In context ↗ - At worst: Severe
Lost the ability to leave my home, to have friends or conversations, and to walk in 2016.
In context ↗ - Now: Much better
1.17mg of low-dose Naltrexone before bed improved my energy over the course of a year from 3/10 homebound/bedridden to 8/10 able to leave the house and work every day.
In context ↗ - Began after: glandular fever or EBV
Mono in March 2012.
Read from 23 of their posts and comments; links to the 11 this page draws on
Summary
A man who fell ill after mono in March 2012 declined over four years from full-time work to being unable to leave home or walk. He credited low-dose naltrexone, started in 2017 and titrated over a year to 1.17 mg at night, with a dramatic turnaround: he regained about 85% of his health, worked part time, exercised at a gym and went out regularly, though he still rested a lot.
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What they tried
What they credit
Also tried
Their words about each treatment
- low dose Naltrexone · Helped a lot
2017 I found low dose Naltrexone. It took a year to figure out how to dose it correctly. Today I take 1.17mg before bed.
In context ↗ - Nicorette gum · Worse
I’ve tried nicotine as an energy booster and it didn’t work for me. Tried chewing Nicorette gum. Just gave me more of that tired-and-wired feeling.
In context ↗ - Vyvanse · Worse
my GP agreed to prescribe me Vyvanse (similar to Adderall) to see if it would help. It did not. Made me crash, even in micro doses.
In context ↗ - abstaining from regular orgasms · Helped
I’ve found that abstaining from regular orgasms does indeed have a positive cumulative benefit for my CFS.
In context ↗ - meditation · Not said
No girlfriend, no pets. Just meditation and blogs.
In context ↗ - pacing · Not said
My doctor gave me a bunch of hope about pacing and therapy and years later I had almost completely degraded to the point where I was bedridden
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 |
|---|---|---|---|
| March 2012 | mono, then gradual onset of ME/CFS; still working before a slow declineMono in March 2012. CFS diagnosis in Nov 2012.In context ↗ | Mild | |
| 2014 | lost ability to work full timeLost my ability to work full time in 2014.In context ↗ | Moderate | |
| 2015 | lost ability to work part timePart time in 2015.In context ↗ | Moderate | |
| 2016 | lost ability to leave home, see friends, hold conversations and walkLost the ability to leave my home, to have friends or conversations, and to walk in 2016.In context ↗ | Severe | |
| 2018-09 | back to part-time work, gym three times a week, vacationsfrom being 95% bed bound to working part time, exercising 3x per week at a gym, and going on vacationIn context ↗ | Mild | Low-dose naltrexone |
| 2019-05 | leaves the house regularly and has a good lifenow I leave the house regularly and have a good lifeIn context ↗ | Mild |
Adverse events
- Nicotine patches“Just gave me more of that tired-and-wired feeling.” In context ↗ Made symptoms worse
- Low-dose naltrexone“Even 1.3mg actually made me sick.” In context ↗ Made symptoms worse
- Lisdexamfetamine (Vyvanse, Elvanse)“Made me crash, even in micro doses.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
less overall Post Exertional Malaise and also less severe crashes
In context ↗ - Muscle weakness
I was so sick I could not walk or talk.
In context ↗ - Anxiety & low mood
Many of us, including myself, have been there.
In context ↗
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