Extremely severe ME/CFS, somewhat better but still bedbound with low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- 6.5 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
I've been suffering with ME for three years now, it's ruined my life
In context ↗ - At worst: Very severe
I was so severe I couldn't even think a thought, very severe, couldnt eat, let alone be on my phone
In context ↗ - Now: Somewhat better
my health is still getting better on LDN ... Still bedbound! But yeah
- Began after: glandular fever or EBV
A UTI antibiotic while taking ssris and gabapentin triggered reactivated EBV.
In context ↗
Read from 29 of their posts and comments; links to the 11 this page draws on
Summary
Lagoon 14576 fell ill with ME/CFS around 2020 after mono and SSRI withdrawal, and by 2024 was extremely severe, unable to speak, chew, tolerate light or sound, or use a phone. Low-dose naltrexone, started in 2024, brought slow, wave-like improvement; florinef, B12 injections, NAD+ spray and Valtrex gave smaller gains. Still bedbound, they can now read, write and make small crafts. LDA caused skipped heartbeats.
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What they tried
What they credit
Also tried
Their words about each treatment
- SSRIs · Not said
My symptoms got much worse after getting off my ssris
In context ↗ - Gabapentin · Not said
A UTI antibiotic while taking ssris and gabapentin triggered reactivated EBV.
In context ↗ - time · Helped
symptoms simply became less intense with time
In context ↗ - Quit my online job · Helped
Quit my online job and symptoms improved
In context ↗ - antibiotics · Helped
Sorry yes 100 n twice a day!
In context ↗ - Florinef · Helped a lot
Florinef - first med that helped me, made it so that I could sit upright and chew food again
In context ↗ - B12 injections · Helped
B12 injections - good for approximately 24 hours. Better circulation and I see color better??
In context ↗ - LDN · Helped a lot
because of LDN (both 1.5 and 2 mg doses improved me)
In context ↗ - Mestinon · No change
Mestinon - lowkey did nothing but it MIGHT have accelerated the improvement of LDN.
In context ↗ - Beta blockers · Helped
Beta blockers - literally does what it says for me, lowers heart rate a bit. Didn't really keep taking it, didn't help much.
In context ↗ - lda · Worse
Ive actually tried 0.1 lda & it made me feel twitchy and weird so idk about that one.
In context ↗ - Valium · Helped
Valium - fantastic for blocking PEM but I only take it like thrice a year
In context ↗ - Vitamin D · Helped
Vitamin D - did kinda make me feel better but I think it was mood
In context ↗ - Coq10 · Helped
Coq10 - did improve brain fog but lk made my thoughts too fast and vivid
In context ↗ - Oregano oil · No change
Oregano oil - did nothing
In context ↗ - Acupuncture · Helped
Acupuncture - helps circulation! But idk how to get it while bedbound
In context ↗ - NAD+ nasal spray · Helped
That NAD+ nasal spray - does help ! Gives me a little boost. Need to keep taking this
In context ↗ - Self done lymphatic massage · Helped
Self done lymphatic massage - calmed me but I doubt improved me
In context ↗ - Iron · No change
Iron- despite my ferritin being extremely low genuinely nothing noticeable
In context ↗ - Valtrex · Helped
i started taking valtrex recently (500 mg) and had like an immediate tiny bump in functioning
In context ↗
Approaches: POTS medication · Antivirals · Benzodiazepines · Supplements
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 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 |
|---|---|---|---|
| 2020 | ME/CFS began after mono and other infections, then worsened after stopping SSRIsI've been suffering with ME for three years now, it's ruined my lifeIn context ↗ | Not stated | |
| 2023-03-23 | symptoms eased after quitting online job and with time; still bedriddenQuit my online job and symptoms improved , but also symptoms simply became less intense with time. They're still bad enough that I'm bedriddenIn context ↗ | Severe | |
| 2024-10 | very severe: could not speak, chew, tolerate light or sound or use phoneI went from severe to moderate and now very severeIn context ↗ | Very severe | |
| 2025-01-13 | able to read books and use phone againnow I can read whole books and stuff, because of LDN (both 1.5 and 2 mg doses improved me)In context ↗ | Severe | Low-dose naltrexone |
| 2025-09-25 | able to be outside and speak out loud againmy health is still getting better on LDN ... I was also able to be outside for the first time last week and speak out loud againIn context ↗ | Severe | Low-dose naltrexone |
| 2026-07-29 | small boost in stability from Valtrex; still bedboundi started taking valtrex recently (500 mg) and had like an immediate tiny bump in functioningIn context ↗ | Severe | Valtrex / valacyclovir |
| 2026-09-06 | still bedbound but can write, read and do small craftslately I have been able to do small crafts againIn context ↗ | Severe | Low-dose naltrexone |
Adverse events
- Low-dose naltrexone“I worsened initially ... i crash like crazy with every ldn increase” Made symptoms worse
- Low-dose naltrexone“i get worse for two weeks, down to not being able to easily chew food again” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“it made me feel twitchy and weird ... it caused my heartbeat to skip in weird ways” Heart rhythm problems
- Valtrex / valacyclovir“after a side effect of having a fever ... just gave me massive anxiety and seems to be giving me bladder issues” In context ↗ Side effects
- CoQ10 / ubiquinol“did improve brain fog but lk made my thoughts too fast and vivid” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
My PEMS manifests as Malaise and also shakiness.
In context ↗ - Brain fog
Coq10 - did improve brain fog but lk made my thoughts too fast and vivid
In context ↗ - POTS & dysautonomia
even though my CFS muscle weakness and POTS was still pronounced
In context ↗ - Sleep problems
my CFS is of the quality where I also usually can't nap/ sleep in
In context ↗ - Light & noise sensitivity
Sound n light sensitivity also slightly reduced
In context ↗ - Muscle weakness
my CFS muscle weakness and POTS was still pronounced
In context ↗ - Heart symptoms & palpitations
insomnia and then hypersomnia, low heart rate and then high one
In context ↗ - Anxiety & low mood
I feel more hopeless than ever before
In context ↗ - Vision problems
I see color better?? Lol like my vision improves. Then it goes back to bad.
In context ↗
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