Long COVID
Moderate → no benefitIll for 13 monthsNeeds ongoing treatment
Long COVID with severe morning fatigue, dysautonomia and brain fog; ibudilast no benefit
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill for
- 13 months
- Last post
- Sep 2024
In their words
- Condition: Long COVID
there was a point in my LC journey
In context ↗ - At worst: Moderate
I just need to lie down and close my eyes.
In context ↗ - Now: No benefit
Even now, a 70mg dose feels like a 50mg dose or something
In context ↗ - Began after: COVID
about 7 months before I got Covid
- Says they never had: Post-exertional malaise
I don’t have chronic fatigue and PEM in the same way I’ve read other people here describing it
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Developed long COVID in August 2023 with severe morning fatigue, dysautonomia, MCAS with repeated anaphylaxis and brain fog. Vyvanse, already taken for ADHD, kept them functional, though they sometimes needed double doses. They joined an ibudilast trial but suspected placebo, and by September 2024 brain fog persisted and their usual dose felt weaker.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- Vyvanse · Helped a lot
If I hadn’t had this prescription, I would have been absolutely not functional since August when it all started. ... Without any vyvanse, I’d be doomed.
- Prazosin · Helped
I took that for massive PTSD nightmares over a period of a few years. Was a huge help.
In context ↗ - Salt / electrolyte capsules · Helped
take my electrolyte capsules! It makes a huge difference for me too
In context ↗ - Quercetin · Worse
I had my first episode of anaphylaxis after I took Quercetin.
In context ↗ - antihistamines · Not said
sometimes have to have my partner bring me a coffee, my antihistamines, and my vyvanse in bed
In context ↗ - ibudilast · Not said
I was ibudilast arm and I assume also placebo. ... can’t tell
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2023-08 | Long COVID onset after Covid infectionI would have been absolutely not functional since August when it all startedIn context ↗ | Moderate |
| 2024-02-19 | still severely fatigued each morning, needing to lie down dailyI feel like I’ve been hit by a truck in the mornings, I need 2891 alarms to wake upIn context ↗ | Moderate |
| 2024-09-15 | stimulant dose feels weaker, brain fog persistsEven now, a 70mg dose feels like a 50mg dose or something, like my ADHD is less severe than unmedicatedIn context ↗ | Mild |
Adverse events
- Baicalein and quercetin“I had my first episode of anaphylaxis after I took Quercetin. It’s possible it was one of the side fillers ingredients” In context ↗ Allergic reaction / anaphylaxis
- Lisdexamfetamine (Vyvanse, Elvanse)“It’s 4 pm and I’ve had a pitiful amount of water, a single latte, and no food thanks to vyvanse.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
It’s just the severity of the brain fog.
In context ↗ - POTS & dysautonomia
A lot of my main symptoms seem to stem from increased dysautonomia
In context ↗ - Mast cell (MCAS) & allergies
I’ve had anaphylaxis so many times, have an Epi-Pen just in case, and get daily reactions from cold, heat, and any food I eat
In context ↗ - Sleep problems
I need 2891 alarms to wake up
In context ↗ - Gut problems
had no change in my GI symptoms
In context ↗