Severe ME/CFS after a COVID vaccine, somewhat better with low-dose naltrexone and NUCCA
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- At worst: Severe
I had ME before but got severe after the COVID vaccine.
In context ↗ - Now: Somewhat better
I had even recovered somewhat after getting COVID for the first time but I haven't recovered from getting the vaccine five years ago.
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
Cedar 82980 has ME and lives alone, working to survive with no support and disability support next to impossible. A first COVID infection left them somewhat recovered, but a COVID vaccine about five years ago made them severe and they have still not returned to their pre-vaccine baseline. Low-dose naltrexone is the only medication that has helped, a NUCCA chiropractor helped this year, and they could not tolerate other treatments.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
Yes LDN is the only thing that has helped me. ... I usually can't tolerate any medication but LDN has really helped me
- creatine · Worse
I can't take it at all and I also found out that it can increase Endometriosis so I stopped trying to take it
In context ↗ - Ketotifen · Worse
I couldn't tolerate 2 mg for even two days. Extreme sleepiness and fatigue and my mood crashed. So I stopped and never trying it again.
In context ↗ - nucca chiropractor · Helped
I've been seeing a nucca chiropractor this year and it's been helping.
In context ↗ - IV vitamin c · Not said
doctor told me to get IV vitamin c before after and a week later to help me not get worse from the vaccine
In context ↗ - COVID vaccination as treatment · Worse
I had ME before but got severe after the COVID vaccine. ... But I still have not gone to my pre vax baseline
In context ↗
Approaches: Alternative therapies
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 |
|---|---|---|
| — | recovered somewhat after first COVID infectionI had even recovered somewhat after getting COVID for the first timeIn context ↗ | Not stated |
| 2021 | became severe after the COVID vaccineI had ME before but got severe after the COVID vaccineIn context ↗ | Severe |
| 2026-10-26 | still below pre-vaccine baseline, working to surviveBut I still have not gone to my pre vax baselineIn context ↗ | Mild |
Adverse events
- Ketotifen (Zaditen)“I couldn't tolerate 2 mg for even two days. Extreme sleepiness and fatigue and my mood crashed.” In context ↗ Side effects
- Ketotifen (Zaditen)“Extreme sleepiness and fatigue and my mood crashed. So I stopped and never trying it again.” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“I had ME before but got severe after the COVID vaccine. ... But I still have not gone to my pre vax baseline” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can tell that even the mood symptoms are probably PEM caused by the added burden on my body while I'm ill.
In context ↗ - Anxiety & low mood
I am feeling so anxious, how my colleagues and my manager must be judging me.
In context ↗ - Flu-like symptoms
I got a sore throat earlier this week.
In context ↗
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