Bedbound with ME/CFS, now somewhat better after peptides and leaving a relationship
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 9 years
- Last post
- Feb 2025
In their words
- Condition: ME/CFS
along the way I discovered I had POTS and ME
In context ↗ - At worst: Severe
They take me from severe to moderate.
In context ↗ - Now: Somewhat better
They take me from severe to moderate.
In context ↗ - Began after: mould or toxic exposure
Mold is where I started, and along the way I discovered I had POTS and ME
In context ↗
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
They had been in the mould community for almost a decade and were a severe reactor; they were bed bound and lost their partner and caregiver without warning, then improved once out of that relationship. Peptide injections (BPC-157 and alternating thymosin beta 4 and thymosin alpha 1) took them from severe to moderate, easing energy and PEM, and an electric wheelchair gave access to better doctors and a bigger life. Many symptoms remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- Bpc 157 · Helped a lot
I also feel much, much, much better when on peptides. Bpc 157, and alternating thymosin beta 4 and thymosin alpha 1.
In context ↗ - thymosin alpha 1 · Helped a lot
but for me they make a huge difference in energy and PEM
In context ↗ - thymosin beta 4 · Helped a lot
They take me from severe to moderate.
In context ↗ - treating for mold · Helped
treating for mold eliminated certain symptoms for me. However I was a severe reactor, and many symptoms remain
In context ↗ - pacing · Helped
Pacing helps you save energy for healing, as well as avoid crashes.
In context ↗ - compression stocking and salt water · No change
try some decent off label meds for pots, not this compression stocking and salt water bullshit
In context ↗ - electric wheelchair · Helped
It was the difference between being housebound and a) getting to better doctors for better treatment b) getting to have a bigger life.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| about 2015 | health problems began in the mould community; POTS and ME discovered along the wayMold is where I started, and along the way I discovered I had POTS and MEIn context ↗ | Not stated |
| — | bed bound and left by partner and caregiver without warningBed bound and left by my partner caregiver without warning.In context ↗ | Severe |
| before December 2024 | improved after getting out of a draining relationshipactually improved when I got out of the drain of the relationshipIn context ↗ | Not stated |
| by July 2024 | peptides lifted them from severe to moderateThey take me from severe to moderate.In context ↗ | Moderate |
| November 2024 | got an electric wheelchair, could reach better doctors and a bigger lifeIt was the difference between being housebound and a) getting to better doctors for better treatment b) getting to have a bigger life.In context ↗ | Moderate |
| 2025-02-25 | found new treatments and more rare diagnoses, hoping for further improvementI ruled out a lot of possible contributors to my fatigue, found new treatments that help me, and found out I had more rare diagnoses.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
for me they make a huge difference in energy and PEM
In context ↗ - POTS & dysautonomia
along the way I discovered I had POTS and ME
In context ↗
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