Miruvor
ME/CFS Severe → substantialIll for 2 years

My Valcyte pilgrimage

OnlyInDreamsforums.phoenixrising.mePublished Aug 2012

Condition
ME/CFS
At worst
Severe (mostly bedbound)
Ill for
2 years
Published
Aug 2012

Summary

About two years into illness with a persistent CMV infection (titer 107 against a normal range of 0-18), severe brain fog, extreme fatigue needing 12+ hours of sleep, and tachycardia and breathing trouble so bad she "felt like I was dying," started Valcyte 1350mg daily alongside supportive drugs (propranolol, nortriptyline, milk thistle, LDN). By three months she could function on six hours of sleep and think clearly; by five months brain-sizzle sensations stopped and stamina improved; by seven months her brain fog was "completely gone" and her CMV titer showed its first recorded drop; by ten months she was still gradually improving. The gain was maintained through her last update, roughly seven months into an 18-month planned course.

Read it in their words

forums.phoenixrising.me

Read the original ↗ Archived copy

What they credit

Low-dose naltrexonePOTS medicationAlternative therapiesAntiviralsBeta-blockersLow-dose naltrexoneValcyte / valganciclovir

Symptoms mentioned

Brain fogPOTS & dysautonomia

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