Long COVID
Severe → no benefitIll for 10 months
Unable to work or sit upright with long COVID, no improvement after antibiotics
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 10 months
- Last post
- Dec 2022
In their words
- Condition: Long COVID
Me too - I’m exercising and eating almost nothing but protein and doing everything you ‘should’ do but it keeps getting worse.
In context ↗ - At worst: Severe
I have had to quit working, I’ve quit being social, I have no function at all.
In context ↗ - Now: No benefit
And it’s been a long slow continual decline since.
In context ↗ - Began after: a vaccination
This all started after getting the COVID vaccine, but they won’t even touch that possibility.
Read from 8 of their posts and comments; links to the 5 this page draws on
Summary
A previously healthy self-employed teacher and performer fell ill in March 2022 and declined over the following months, unable to work, sleep or sit upright, with spreading pain, muscle wasting, gut problems and a racing heart. Doctors called it anxiety; tests found Lyme in spinal fluid and Epstein Barr, and antibiotics did nothing. They blamed a COVID vaccine, and by December 2022 reported still suffering and dying.
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What they tried
Also tried
Lyme antibiotics· No changenaltrexone· No changeexercising· Worseeating almost nothing but protein· Worse
Their words about each treatment
- exercising · Worse
I’m exercising and eating almost nothing but protein and doing everything you ‘should’ do but it keeps getting worse.
In context ↗ - Lyme antibiotics · No change
Lyme antibiotics for two months now and counting hasn’t helped anything.
In context ↗ - naltrexone · No change
Been on it about 2 months now - no change good nor bad thus far
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 |
|---|---|---|
| March 2022 | overnight switch from fully functional to ill after one SSRI doseI went overnight from functional to not.In context ↗ | Moderate |
| 2022-07-09 | quit work and social life; constant pain, insomnia, gut problemsI have had to quit working, I’ve quit being social, I have no function at all.In context ↗ | Severe |
| 2022-10-20 | continual decline; Lyme in spinal fluid and EBV found, antibiotics and low-dose naltrexone brought no changeit’s been a long slow continual decline sinceIn context ↗ | Severe |
| 2022-12-21 | still declining, attributes illness to the vaccineNow going to lose it in the most painful horrible manner possible.In context ↗ | Severe |
Adverse events
- “I took a dose of that medication on March 3rd, and since then my life has been ruined.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodFlu-like symptomsGut problemsHeart symptoms & palpitationsLoss of smell or tasteMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
When I try and push myself and actually do anything, like a short walk or workout, I am laid out somewhere quick for hours.
In context ↗ - POTS & dysautonomia
My autonomic systems were ruined, and now my heart races all the time. My blood pressure is suddenly oftentimes low.
In context ↗ - Heart symptoms & palpitations
now my heart races all the time
In context ↗ - Sleep problems
I get no rest whatsoever from sleep
In context ↗ - Pain & fibromyalgia
my back pain especially is never ending
In context ↗ - Gut problems
I’ve suffered either terrible constipation
In context ↗ - Muscle weakness
I have suffered so much muscle atrophy and weakness
In context ↗ - Flu-like symptoms
I have waves throughout the day that feel like the flu when I have no fever or anything else
In context ↗ - Anxiety & low mood
I keep hoping to just go in my sleep.
In context ↗ - Loss of smell or taste
Now, everything tastes terrible, like sour in my mouth
In context ↗