Severe ME/CFS with POTS, somewhat better; low-dose naltrexone caused edema
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
severe ME and long covid
In context ↗ - At worst: Severe
severe ME and long covid
In context ↗ - Now: Somewhat better
I cant stop this medication it saved my life afte rmy last covid infection.
In context ↗ - Began after: COVID
it saved my life afte rmy last covid infection
Summary
A Reddit user in Germany with severe ME/CFS and long COVID, POTS and low blood volume started low-dose naltrexone 0.5 mg daily a few months before April 2026; it caused water retention, which is paradoxical given their low blood volume. Raising it to 1 mg worsened things with fainting, confusion and low urine output; an ER visit followed and doctors said to stop. Off it they felt better within days, but restarting 0.5 mg brought edema and low urine again. They kept it because it had saved their life after a COVID infection.
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What they tried
What they credit
Their words about each treatment
- LDN · Helped
I cant stop this medication it saved my life afte rmy last covid infection.
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. 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 |
|---|---|---|---|
| — | illness after a COVID infectionmy last covid infectionIn context ↗ | Not stated | |
| — | severe ME and long COVID with POTS and low blood volumesevere ME and long covidIn context ↗ | Severe | |
| — | water retention on 0.5 mg LDNI started LDN few months ago, 0.5 dayli. It caused water retentionIn context ↗ | Severe | Low-dose naltrexone |
| — | raised LDN to 1 mg, fainting and hypovolemia, ER visitI put a higher dosis, 1 mg and then everything went much worseIn context ↗ | Severe | Low-dose naltrexone |
| — | stopped LDN and felt better a few days laterA few days later i felt better and started again with 0.5In context ↗ | Severe | |
| 2026-04-18 | restarted 0.5 mg LDN, edema and low urine returnedInmediatly the water retention, edema and low urineIn context ↗ | Severe | Low-dose naltrexone |
Adverse events
- Low-dose naltrexone“LDN causes urinary problems, edema and liver damage” In context ↗ Side effects
- Low-dose naltrexone“LDN causes urinary problems, edema and liver damage” In context ↗ Liver or kidney problems
- Low-dose naltrexone“LDN INTOLERANCE, kidney problems, low blood volume” In context ↗ Liver or kidney problems
- Low-dose naltrexone“It caused water retention” In context ↗ Side effects
- Low-dose naltrexone“I put a higher dosis, 1 mg and then everything went much worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I was in the ER after 2 days fainting and stopping LDN. I had severe hypovolemia” In context ↗ Low blood pressure or fainting
- Low-dose naltrexone“I was in the ER after 2 days fainting and stopping LDN.” In context ↗ ER visit
- Low-dose naltrexone“Inmediatly the water retention, edema and low urine- proteins in urine but could be dehydration, started again.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
severe low blood volume from ME and POTS
In context ↗ - Brain fog
i was fainting, confused, very very weak
In context ↗
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