Daily exhaustion with ME/CFS, now somewhat better after low-dose medication
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Nov 2021
In their words
- Condition: ME/CFS
I have CFS/ME (due to chronic EBV)
In context ↗ - At worst: Moderate
My son has to take a nap everyday so that I can take a nap. I feel so much pain if I don't get to nap
In context ↗ - Now: Somewhat better
It was a game changer for me. ... this one has helped me a lot.
In context ↗ - Began after: glandular fever or EBV
I have CFS/ME (due to chronic EBV)
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
Mesa 55393 has ME/CFS attributed to chronic Epstein-Barr virus, and in early 2021 was exhausted, needing a daily nap and a dark room and crashing every afternoon while caring for a young son. They were on many supplements and had just started monolaurin without clear benefit. A low-dose medication (500 mg) was a game changer, and they felt better after their second Pfizer dose, with no side effects from the shots.
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What they tried
What they credit
Also tried
Their words about each treatment
- supplements · Not said
I am on a ton of supplements with sky-high early antigen levels for EBV that didn't go down after a couple of months of supplements
In context ↗ - monolaurin · Not said
I just started the monolaurin
In context ↗ - caffeine · Not said
I dose myself on caffeine and do what I can until the inevitable afternoon crash
In context ↗ - Valtrex · Helped a lot
I do find it extremely helpful and can't live without it ... It was a game changer for me.
In context ↗ - second Pfizer dose · Helped
I actually felt better after my second Pfizer dose
In context ↗
Approaches: Antivirals · Vaccination
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. 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 |
|---|---|---|---|
| — | ME/CFS attributed to chronic EBVI can't seem to find any evidence that anything really works for ME/CFS- which in my case seems to be due to CEBVIn context ↗ | Not stated | |
| 2021-03-09 | exhausted caring for a 3.5-year-old, daily naps and dark room, afternoon crashesI'm just so incredibly tired and unable to take it if I don't lay down in a dark room!In context ↗ | Moderate | |
| 2021-11-07 | low-dose antiviral (500 mg) called a game changerIt was a game changer for me.In context ↗ | Mild | Valtrex / valacyclovir |
| 2021-11-08 | felt better after second Pfizer dose, no side effects from the shotsI actually felt better after my second Pfizer dose.In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Sleep problems
my son has to take a nap everyday so that I can take a nap
In context ↗ - Light & noise sensitivity
unable to take it if I don't lay down in a dark room
In context ↗ - Pain & fibromyalgia
I feel so much pain if I don't get to nap
In context ↗
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