Bedbound with ME/CFS, now much better after famciclovir
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
My ME/CFS appears to be linked to chronic EBV reactivation
In context ↗ - At worst: Severe
Famciclovir got me from severe to mild-moderate.
In context ↗ - Now: Much better
I went from bedbound to pretty functional. I’m not anywhere near where I used to be, though.
In context ↗ - Began after: glandular fever or EBV
My ME/CFS appears to be linked to chronic EBV reactivation
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
A person with ME/CFS linked to chronic EBV reactivation was bedbound at their worst and took eight years to be diagnosed. From January 2025 they pushed themselves to do more, saying symptoms became their most severe, and composite fillings replaced in October 2024 preceded a decline. Famciclovir took them from severe to mild-moderate, though nowhere near their old level, and gut symptoms after eating persisted.
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What they tried
What they credit
Also tried
Their words about each treatment
- respecting symptoms and resting · Helped
I’m someone who used to respect my symptoms and allow myself to rest
In context ↗ - composite fillings · Worse
I got some old fillings replaced by new composite ones in October and those teeth are crazy sensitive and I’ve been going downhill since then.
In context ↗ - pushing myself · Much worse
I promised my spouse I would begin really pushing myself to do better for us. Now my symptoms are at their most severe and I’m terrified.
In context ↗ - Famciclovir · Helped a lot
taking other antivirals have helped me get back on my feet ... Famciclovir got me from severe to mild-moderate
- bug bite thing · Helped a lot
The bug bite thing (purchase it online) was a life changer for me
In context ↗ - digestive enzymes · Helped
every once in awhile I use digestive enzymes and eat risky foods and I’m fine.
In context ↗
Approaches: Antivirals
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 7.6 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 |
|---|---|---|---|
| onset | ME/CFS onset, later linked to chronic EBV reactivationMy ME/CFS appears to be linked to chronic EBV reactivationIn context ↗ | Not stated | |
| January 2025 | began pushing themselves to do more for their spouse; symptoms became their most severeStarting in January ... Now my symptoms are at their most severe and I’m terrified.In context ↗ | Severe | |
| June-July 2025 | went from bedbound/severe to mild-moderate and pretty functionalFamciclovir got me from severe to mild-moderate.In context ↗ | Mild | Famvir / famciclovir (Pridgen) |
| 2026-08-31 | still functioning at antiviral-improved level; feels sick after eatingI feel this same way after eating.In context ↗ | Mild |
Adverse events
- “my swollen lymph nodes that wont go away ... I’ve only really noticed them after getting composite fillings” In context ↗ Side effects
- “those teeth are crazy sensitive” In context ↗ Side effects
- “I’ve been going downhill since then” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I promised my spouse I would begin really pushing myself to do better for us. Now my symptoms are at their most severe and I’m terrified.
In context ↗ - POTS & dysautonomia
chronic EBV reactivation which I believe has led to POTS
In context ↗ - Neuropathy & tingling
small fiber neuropathy
In context ↗ - Flu-like symptoms
my swollen lymph nodes that wont go away
In context ↗ - Gut problems
I feel this same way after eating. My suspicion is it’s my microbiome. High fodmap foods are an absolute killer for me.
In context ↗
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