ME/CFS
Severe → no benefit
85% bedbound with ME/CFS after 10 months of antivirals, no improvement
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Mar 2018
In their words
- At worst: Severe
went from able to leave the house several times a week to 85%.bedbound in that time period
In context ↗ - Now: No benefit
went from able to leave the house several times a week to 85%.bedbound in that time period
In context ↗
Summary
They could still write in a cafe three or four days a week and leave the house several times a week before five months of Valtrex and then five months of Famvir in 2016. Over those ten months of antivirals they deteriorated, ending 85% bedbound by the end of that period in 2016. Their Stanford doctors denied the drugs caused the decline and wanted another six months of antivirals; the person intended to refuse unless the doctors answered their questions.
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What they tried
Also tried
Their words about each treatment
- Valtrex · Much worse
I took Valtrex for 5 months and Famvir for another 5 and went from able to leave the house several times a week to 85%.bedbound in that time period.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | before antivirals: still able to write in a cafe and leave the house several times a weekable to write in a cafe 3-4 days a weekIn context ↗ | Mild |
| 2016-2017 | deteriorated over 10 months of antivirals, to 80-85% bedboundI took Valtrex for 5 months and Famvir for another 5 and went from able to leave the house several times a week to 85%.bedbound in that time periodIn context ↗ | Severe |
| 2018-03-24 | still 85% bedbound; refused further antiviralswent from able to write in a cafe 3-4 days a week to 80% bedboundIn context ↗ | Severe |
Adverse events
- Valtrex / valacyclovir“I got significantly worse while taking Valtrex and still haven't got my doctors (Stanford) to agree that Valtrex was the cause.” In context ↗ Made symptoms worse
- Famvir / famciclovir (Pridgen)“But my deterioration accelerated a WHOLE LOT while taking Valtrex and later, Famvir ... I was on antivirals for 10 months and went from able to write in a cafe 3-4 days a week to 80% bedbound.” Made symptoms worse