Very sick with ME/CFS, resting fully for weeks, now a little better with valacyclovir
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 years
- Last post
- Jul 2024
In their words
- Condition: ME/CFS
I’m pretty much still at the start of this ME journey
In context ↗ - At worst: Severe
I don’t have any PEM as I’m not exerting myself at all anymore. But even complete rest, now for weeks, doesn’t seem to improve me.
In context ↗ - Now: Somewhat better
overall felt a little less fatigued, and quite a lot less brain fog ... still at the start of this ME journey as I’ve been knocked out so hard from the opioid issues
In context ↗ - Began after: another virus
after having traced my symptoms is estimated to be when I was infected
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Horizon 21728 dated her ME/CFS to a viral infection about 15 years before 2024, alongside panhypopituitarism and autism. By 2024 she was very sick, resting fully for weeks and collapsing with a pulse of 33 bpm, which led to an ER visit and an inpatient stay. A one-month course of valacyclovir, 1000 mg daily, left her a little less fatigued and with much less brain fog, and she started a three-month course.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- replacement (pituitary hormone replacement) · Not said
In my case all my hormone levels are undetectable if it were not for replacement.
In context ↗ - Lysine · Not said
I’d been taking high strength Lysine, Vitamin C, D, Zinc for years now not knowing I had ME
In context ↗ - medical weed · Not said
I don’t tell anyone except my family that I use medical weed, because even though I have it for the multiple conditions I have that cause pain
In context ↗ - keeping my heart rate below a certain level · Helped
I do find that keeping my heart rate below a certain level really helps PEM.
In context ↗ - complete rest · No change
But even complete rest, now for weeks, doesn’t seem to improve me.
In context ↗ - opioids · Much worse
was an inpatient as I collapsed from low heart rate (caused by opioids)
In context ↗ - Valacyclovir · Helped
I was on 1000mg daily for 1 month, and overall felt a little less fatigued, and quite a lot less brain fog.
In context ↗
Approaches: Antivirals
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 15.2 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 | After |
|---|---|---|---|
| ~2009 (15 years before 2024) | estimated viral infection starting ME/CFSafter having traced my symptoms is estimated to be when I was infectedIn context ↗ | Not stated | |
| April 2024 | collapsed with a pulse of 33 bpm, taken to ERI landed there in April after collapsing, pulse was 33bpm!In context ↗ | Severe | |
| 2024-06-21 | used to have good weeks, now constantly badI used to be able to have good weeks at least, lately is just constantly bad.In context ↗ | Severe | |
| mid-2024 | less fatigue and much less brain fog on a one-month courseoverall felt a little less fatigued, and quite a lot less brain fogIn context ↗ | Severe | Valtrex / valacyclovir |
| 2024-07-16 | still very sick, starting a three-month valacyclovir courseI’m pretty much still at the start of this ME journeyIn context ↗ | Severe |
Adverse events
- Opioids (unspecified)“I collapsed from low heart rate (caused by opioids).” In context ↗ Heart rhythm problems
- Opioids (unspecified)“I’ve been very sick for 3 months now and was an inpatient as I collapsed from low heart rate (caused by opioids).” In context ↗ Hospitalisation
- Opioids (unspecified)“I’ve been knocked out so hard from the opioid issues that it’s overshadowed all my other symptoms.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I do find that keeping my heart rate below a certain level really helps PEM.
In context ↗ - Brain fog
overall felt a little less fatigued, and quite a lot less brain fog
In context ↗ - POTS & dysautonomia
I landed there in April after collapsing, pulse was 33bpm!
In context ↗ - Pain & fibromyalgia
I have it for the multiple conditions I have that cause pain
In context ↗ - Anxiety & low mood
the crazy anxiety that accompanies having to watch your life evaporate in front of you
In context ↗
Ask Miruvor AI
Similar stories
-
ME/CFS, mostly housebound, somewhat better with Valtrex and dipyridamole
She had ME/CFS for over a decade; mild for the first decade until cardio pushed her to moderate, mostly housebound and unable to work. Valtrex helped after a few weeks, and dipyridamole from the Stanford clinic cut her brain fog and depression within two…
-
Long COVID with PEM and brain fog, now close to normal after keto and fasting
Lake 45346 got long COVID after a COVID infection in August 2022 and had PEM, brain fog, broken sleep and carb intolerance. He credits keto, fasting, fermented foods, low-dose naltrexone, cold plunges, nightly guanfacine, sauna and high-dose thiamine TTFD…
-
Bedbound half of most weeks with ME/CFS, now rarely in bed after mestinon
Pond 40993 has had ME/CFS since bronchitis about 18 years before her latest post. She was bedbound half of most weeks before a specialist helped her trial medications; mestinon gave the best effect and antivirals added small gains, taking her from half her…
-
Largely bedridden with long COVID, now somewhat better on antivirals
She developed long COVID in 2022 after two COVID infections, and after a booster in November 2024 became largely bedridden and wheelchair-dependent; a mini stroke and a Sjögren's diagnosis followed. TMS, Plaquenil, peptides, nattokinase, antivirals and a…