Long COVID with lost smell and taste; improved, then relapsed and can no longer work
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I have LC after contracting Covid in March 2021.
In context ↗ - At worst: Severe
I slept most of the 3 months after that and got better.
In context ↗ - Now: Relapsed
I've got Covid twice since then and have gone backwards each time.
In context ↗ - Began after: COVID
I have LC after contracting Covid in March 2021.
In context ↗
Read from 22 of their posts and comments; links to the 11 this page draws on
Summary
She developed long COVID after a Covid infection in March 2021, losing all sense of smell and taste. Repeated crashes while working a high-pressure job led her to retire; after sleeping most of three months she improved enough to freelance. A cytokine storm after multiple vaccines in fall 2023 and reinfections in December 2023 and again in 2025 set her back each time, and she is no longer able to work. She was later diagnosed with orthostatic hypotension.
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What they tried
Also tried
Their words about each treatment
- Paxlovid · Helped
I do think taking it made my case much milder. ... It didn't help my LC
In context ↗ - multiple vaccines at once · Much worse
I had multiple vaccines at once last fall that triggered cytokine storm, I was deathly ill for a solid 3 weeks.
In context ↗ - pacing · Helped
When I was diagnosed with PEM and learned pacing, mine improved so much.
In context ↗ - antibiotics · Worse
Since I got long covid, I crash on them every time.
In context ↗ - feverfew · Helped
One thing that helped a LOT was the herb feverfew.
In context ↗ - rest · Helped
I retired before it killed me. I slept most of the 3 months after that and got better.
In context ↗ - Visible pacing monitor · Helped
I have Visible and I find it helpful.
In context ↗ - metoprolol · Not said
She put me on metoprolol and order a tilt table test.
In context ↗
Approaches: Pacing · Radical rest
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. 3 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| March 2021 | Covid infection followed by long COVID; lost smell and tasteI have LC after contracting Covid in March 2021.In context ↗ | Mild |
| — | repeated crashes at a high-pressure job, then retired and slept most of three monthsI would crash but never got recovery time. When I finally figured it out, I retired before it killed me.In context ↗ | Severe |
| — | improved after retiring and resting, able to freelanceI was able to freelance even.In context ↗ | Mild |
| fall 2023 | cytokine storm after multiple vaccines at once, deathly ill three weeksI had multiple vaccines at once last fall that triggered cytokine storm, I was deathly ill for a solid 3 weeks.In context ↗ | Severe |
| December 2023 | second Covid infection, took a month to shake offIt took a month or so to shake it off and figure out my new normal.In context ↗ | Mild |
| 2025 | third Covid infection, constant exhaustion, heart issues, stopped workingI am no longer able to work. I'm in the process of figuring out my heart issues that began after my most recent bout of Covid in 2025.In context ↗ | Moderate |
| October 2026 | still struggling after the last infection, with brain fog and exhaustionThe last one I had gave me huge setbacks that I'm still struggling with.In context ↗ | Moderate |
Adverse events
- Paxlovid / nirmatrelvir“But of course, I could taste the metallic taste of the Paxlovid.” In context ↗ Side effects
- COVID vaccination as treatment“I had multiple vaccines at once last fall that triggered cytokine storm, I was deathly ill for a solid 3 weeks.” In context ↗ Autoimmune or inflammatory flare
- Antibiotics (unspecified)“I'm allergic to several of them” In context ↗ Allergic reaction / anaphylaxis
- Antibiotics (unspecified)“Since I got long covid, I crash on them every time.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
When I was diagnosed with PEM and learned pacing, mine improved so much.
In context ↗ - Brain fog
I have a lot of brain fog today, so hope my post makes sense.
In context ↗ - Loss of smell or taste
I lost my senses of smell and taste.
In context ↗ - Heart symptoms & palpitations
I'm in the process of figuring out my heart issues that began after my most recent bout of Covid in 2025.
In context ↗ - POTS & dysautonomia
Ends up, I didn't have POTS, but Orthostatic Hypotension.
In context ↗
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