ME/CFS
Outcome unclear
ME/CFS with EBV and POTS uncontrolled at worst, tried valacyclovir and famciclovir
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Jul 2022
In their words
- Condition: ME/CFS
my CFS specialist
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Crocus 34218, posting in 2022, had ME/CFS with positive EBV and POTS, uncontrolled at their worst. Valacyclovir 500 mg daily helped them feel better; 1 g caused awful tinnitus. Famciclovir and Abilify made them worse (especially Abilify), and spironolactone 100 mg only made them pee more; an expensive supplement protocol did nothing. They were still trialling ubiquinol.
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What they tried
Also tried
valacyclovir· Helpedspiro· No changesupplement protocol· No changeubiquinol· No changefamciclovir· Worseabilify· Worse
Their words about each treatment
- valacyclovir · Helped
I am currently taking valacyclovir 500mg daily ... just 500mg really helps me feel better
In context ↗ - famciclovir · Worse
The famciclovir actually made me feel worse
In context ↗ - spiro · No change
I was on spiro 100mg daily ... all it did was make me pee more
In context ↗ - abilify · Worse
both of which made me worse (especially the abilify, what utter poison)
In context ↗ - supplement protocol · No change
the insanely expensive supplement protocol that did nothing
In context ↗ - ubiquinol · No change
I haven't increased to 200mg yet and I'm feeling nothing
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| — | worst of illness, POTS not yet controlledduring the the worst of my illness (before the POTS was controlled)In context ↗ | |
| 2022-07-03 | valacyclovir 500 mg daily helps them feel betterjust 500mg really helps me feel betterIn context ↗ | Valtrex / valacyclovir |
| 2022-07-11 | still on valacyclovir, trialling ubiquinol without effect yetI haven't increased to 200mg yet and I'm feeling nothingIn context ↗ | CoQ10 / ubiquinol |
Adverse events
- Valtrex / valacyclovir“At 1g daily I got awful tinnitus so I dropped back” In context ↗ Side effects
- Famvir / famciclovir (Pridgen)“The famciclovir actually made me feel worse” In context ↗ Made symptoms worse
- Spironolactone“all it did was make me pee more” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“both of which made me worse (especially the abilify, what utter poison)” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
before the POTS was controlled
In context ↗ - Tinnitus
At 1g daily I got awful tinnitus
In context ↗