ME/CFS after long COVID, severe stomach pain, insomnia; LDN helped then a relapse
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Mar 2024
In their words
- Condition: ME/CFS
I developed MECFS after long Covid. It’s been four years now.
In context ↗ - At worst: Severe
I am very weak now, and have lost a lot more muscle mass. I am now needing help with bathing
In context ↗ - Now: Relapsed
I had to go off low-dose naltrexone in December and have been declining ever since.
In context ↗ - Began after: COVID
I developed MECFS after long Covid.
Summary
They developed ME/CFS after long COVID and had been ill four years by March 2024. Low-dose naltrexone from autumn 2023 improved their eating and sleep, but after a severe reaction when they changed pharmacies they stopped it in December 2023 and declined steadily. They lost 20 pounds, had severe stomach pain and insomnia, lost muscle mass and needed help bathing; ivabradine did little.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
I started LDN last fall and was having pretty good results with better eating and sleep.
In context ↗ - low histamine · Not said
I believe I have histamine intolerance, so try to keep low histamine.
In context ↗ - Ivabradine · No change
I am taking Ivabradine , but it doesn’t seem to help very much.
In context ↗ - GI repair drink · Helped
I also take a GI repair drink first thing in the morning. I think it’s also helping a bit.
In context ↗ - PPI antacid · Worse
I tried to take a PPI antacid, but I had a terrible reaction to it so I did not continue.
In context ↗ - Tums · Not said
Sometimes I’ll take a Tums if the acid is bad.
In context ↗ - wedge pillow · Helped
I use a wedge pillow now for a couple hours after I eat. It’s not very comfortable, but it seems to help.
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 3.8 years after onset: the story doesn’t say how ill they were before that. 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 | After |
|---|---|---|---|
| 2020 | ME/CFS after long COVIDI developed MECFS after long Covid. It’s been four years now.In context ↗ | Not stated | |
| fall 2023 | started LDN, better eating and sleepI started LDN last fall and was having pretty good results with better eating and sleep.In context ↗ | Not stated | Low-dose naltrexone |
| December 2023 | stopped LDN, severe declineI had to go off low-dose naltrexone in December and have been declining ever since.In context ↗ | Severe | |
| 2024-03-25 | continuing decline with weight loss, stomach pain, insomniaI am very weak now, and have lost a lot more muscle mass. I am now needing help with bathingIn context ↗ | Severe |
Adverse events
- Low-dose naltrexone“I had to change pharmacies and had a severe reaction to it. ... I still wasn’t able to tolerate it so stopped.” In context ↗ Side effects
- “I tried to take a PPI antacid, but I had a terrible reaction to it so I did not continue.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
I also have loss of appetite and acid reflux with this
In context ↗ - Mast cell (MCAS) & allergies
I believe I have histamine intolerance, so try to keep low histamine
In context ↗ - Sleep problems
I also have severe insomnia.
In context ↗ - Muscle weakness
I am very weak now, and have lost a lot more muscle mass.
In context ↗ - Heart symptoms & palpitations
my heart rate is much higher than before
In context ↗
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