ME/CFS
Severe → relapsedIll 5 years before improving or writingNeeds ongoing treatment
ME/CFS: relatively well, then worsened to bedridden, trying bupropion and valganciclovir
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Jan 2018
In their words
- Condition: ME/CFS
I am currently being treated for CFS at Stanford
In context ↗ - At worst: Severe
I still have not recovered, and have either been bedridden or have to really pay attention to my energy since then.
In context ↗ - Now: Relapsed
it was the first time in about 5 years that I had felt that well ... I still have not recovered
In context ↗
Read from 7 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user ill for about five years and treated for CFS at Stanford felt relatively well in summer 2017, then travelled to visit their brother and worsened, becoming bedridden or having to ration energy. By December 2017 they were still not recovered, with worse brain fog, joint pain and digestive problems, resting for a day before any outing. Bupropion and a slow valganciclovir trial were under way; valganciclovir made them sick above 1 mL.
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What they tried
Also tried
Their words about each treatment
- Mediterranean diet · Not said
I am currently being treated for CFS at Stanford- and am told to adhere to the "Mediterranean diet".
In context ↗ - bupropion XL · Helped
for energy I actually take bupropion XL mornings (a prescribed medication), it doesn't feel like a kick of energy but over time without it I notice a big difference
In context ↗ - resting completely the day before outings · Not said
before going out (making a longer grocery trip, getting coffee with someone) I was advised by my specialist to at least the day before to COMPLETELY rest
In context ↗ - valganciclovir (liquid Valcyte) · Worse
when I started an anti-viral (liquid valcyte starting at 1mL) ... But once I started 2mL I became very sick every single day until I realized it was probably the meds
In context ↗ - Valtrex · Not said
I was briefly on Valtrex (forget the dosage rn), and didn't notice side effects.
In context ↗
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 5 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 |
|---|---|---|
| onset | CFS onset, cause not identifiedI am currently being treated for CFS at StanfordIn context ↗ | Not stated |
| summer 2017 | felt better than in years though still symptomaticit was the first time in about 5 years that I had felt that well (although still pretty sick and experiencing symptoms)In context ↗ | Moderate |
| summer 2017 | crashed after a trip to visit their brotherI still have not recovered, and have either been bedridden or have to really pay attention to my energy since then.In context ↗ | Severe |
| December 2017 | still ill, resting fully before any outing; valganciclovir limited to 1 mL by sicknessbefore going out (making a longer grocery trip, getting coffee with someone) I was advised by my specialist to at least the day before to COMPLETELY restIn context ↗ | Moderate |
Adverse events
- Valcyte / valganciclovir“once I started 2mL I became very sick every single day until I realized it was probably the meds.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
After said energy-sucking event, I have to really make sure I have time to rest again.
In context ↗ - Brain fog
my brain fog and memory is worse (I cant always continue a conversation because I'll forget what someone just said or can't focus)
In context ↗ - Gut problems
my stomach and digestive system seems all out of whack
In context ↗ - Pain & fibromyalgia
My joints are in pain, and I've had costochondritis since it suddenly hit me in the middle of the trip.
In context ↗ - Anxiety & low mood
whenever I began to panic or become anxious I would just leave and walk or run until i couldn't anymore
In context ↗