ME/CFS
Severe → no benefitIll for 13 years
ME/CFS for over 13 years, too sick to work, with abdominal pain and brain fog, no better
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- 13 years
- Last post
- Nov 2015
In their words
- Condition: ME/CFS
I had it for 7 years and made what was apparently a full recovery.
In context ↗ - At worst: Severe
I worked for another 5 months until I was too sick to work or look after myself
In context ↗ - Now: No benefit
It's worse this time, and has been going for 13 years.
In context ↗ - Began after: another virus
Then a particularly bad flu went around at work.
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
Beech 71380 had CFS for seven years as a teenager, recovered fully and worked full time for five years, until a bad flu at 25 triggered a second bout that has lasted over 13 years. They were too sick to work or care for themselves, with crippling abdominal pain, poor sleep and brain fog. Folinic acid, a lactose-free diet, melatonin and CPAP helped some symptoms; doctors said they would not recover.
Ask Miruvor AI
What they tried
Also tried
MegaFolinic (calcium folinate, folinic acid)· HelpedPicolax· Helpedlactose free diet· Helpedquiet/dark room· HelpedMelatonin· HelpedCPAP· Helpedcaffeine· Helpedlactoferrin· No changeliquid only diet of Sustagen hospital formula· Worseantibiotics under the Marshall Protocol· Not said
Their words about each treatment
- MegaFolinic (calcium folinate, folinic acid) · Helped
It works for me. I felt a noticible improvement after 2-3 days, and blood tests showed my homocysteine levels had dropped to normal levels.
In context ↗ - Picolax · Helped
It's the only laxative that works on me, and the night after taking it I sleep 6 hours less and wake up completely refreshed
In context ↗ - antibiotics under the Marshall Protocol · Not said
Yes, I was on antibiotics for several years under the Marshall Protocol. I'm sure my gut flora is screwed up.
In context ↗ - lactoferrin · No change
I tried lactoferrin for a while with no success
In context ↗ - liquid only diet of Sustagen hospital formula · Worse
some time back I tried a liquid only diet of Sustagen hospital formula. The pain got worse
In context ↗ - lactose free diet · Helped
I've opted to try lactose free to start with. There's been a definite improvement. Still pain there, but less bloating and gurgling
In context ↗ - quiet/dark room · Helped
Quiet/dark room, Melatonin and CPAP have been working for me
In context ↗ - Melatonin · Helped
Quiet/dark room, Melatonin and CPAP have been working for me, at least to reduce the utter exhaustion I feel after waking up.
In context ↗ - caffeine · Helped
I've also found that caffeine is a huge boost during the day.
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. The chart starts 7 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 |
|---|---|---|---|
| as a teenager | first bout of CFS lasting seven yearsCFS for 7 years as a teenagerIn context ↗ | Not stated | |
| after 7 years of illness | full recovery; worked full time for five years and played sportI had it for 7 years and made what was apparently a full recovery. Worked full time, played sport after work and on the weekends.In context ↗ | Recovered | |
| age 25 | bad flu at work triggered a second bout of CFSThen a particularly bad flu went around at work ... over the following months I descended back into CFSIn context ↗ | Moderate | |
| 5 months after the flu | kept working until too sick to work or look after themselvesI worked for another 5 months until I was too sick to work or look after myself.In context ↗ | Severe | |
| December 2012 | folinic acid gave a noticeable improvement in symptomsfolinic acid has made a bigger difference to me than any treatment I've tried over the years. Takes about 3 days to kick in.In context ↗ | Severe | Folinic acid (leucovorin) |
| 2015-11-30 | still ill; melatonin, CPAP and a quiet dark room reduce morning exhaustionQuiet/dark room, Melatonin and CPAP have been working for me, at least to reduce the utter exhaustion I feel after waking up.In context ↗ | Severe |
Adverse events
- Antibiotics (unspecified)“Yes, I was on antibiotics for several years under the Marshall Protocol. I'm sure my gut flora is screwed up.” In context ↗ Gut side effects
- “I tried a liquid only diet of Sustagen hospital formula. The pain got worse” In context ↗ Made symptoms worse
- “my bowel movements vary between normal and diarrhea, and oddly most laxatives make me constipated” In context ↗ Gut side effects
- “But it's far too potent and unpleasant to take more than a couple of times a year.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
It leaves me wrecked afterwards and worse off.
In context ↗ - Brain fog
Not remembering things, typing jumbled words, etc.
In context ↗ - Sleep problems
My sleep cycle is at the mercy of my gut.
In context ↗ - Gut problems
Abdominal pain has been one of the most crippling parts of CFS for me.
In context ↗ - Headaches & migraine
it did fix a bunch of headache-related food intollerances
In context ↗