Long COVID and COVID pneumonia, now much better with rest and FLCCC protocol
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Feb 2025
In their words
- Condition: Long COVID
Long COVID in 2020
In context ↗ - At worst: Severe
I slept around the clock with minimal awake time for 3 weeks when I moved in with her.
In context ↗ - Now: Much better
Very very gradual and not 100% after 5 years. I still have to pace what I do everyday
In context ↗ - Began after: COVID
about 2 months after getting COVID in February of 2020
In context ↗ - Says they never had: Brain fog
Not brain fog, more like things weren’t real.
- Says they never had: Loss of smell or taste
never lost my smell
Read from 13 of their posts and comments; links to the 11 this page draws on
Summary
Sandpiper 20680 fell ill with long COVID in February 2020, was hospitalised with COVID pneumonia and later retired on disability. Improvement came gradually over about four and a half years, credited to sleep, rest, the FLCCC protocol, medication and time outdoors. By 2025 they could work about two days a week but still paced and slept 13-15 hours some days; a head cold brought back tinnitus and headaches.
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What they tried
What they credit
Also tried
Their words about each treatment
- Tramadol · Not said
I was on Tramadol for 16 years before trying LDN
In context ↗ - Abilify · Not said
I also take a wee bit of Abilify but was already on it for treatment resistant depression
In context ↗ - LDN · No change
LDN didn’t do anything for me- probably because I was on Tramadol for 16 years before trying LDN.
In context ↗ - Solu Medrol pak · Helped
taking the Solu Medrol pak because my hives were SO BAD ... I actually FELT GOOD after a couple of days into the pak.
In context ↗ - Benadryl · No change
Hydrocortisone, Benadryl, antibiotic ointment, standard lotion, nothing helped.
In context ↗ - Aquaphor, hydrocortisone, antibiotic ointment, calamine lotion and other lotions · No change
I had tried Aquaphor, multiple lotions, Benadryl cream, Benadryl pills, A and D ointment, calamine lotion, etc.
In context ↗ - Ponds cold cream in the green jar · Helped
The only thing that helped to settle down the rash was Ponds cold cream in the green jar.
In context ↗ - FLCCC protocol · Helped
I did get better, not all the way, took a good 4.5 years. But I credit God, my family, my doctor, the FLCCC protocol, and two specific medications.
In context ↗ - rest · Helped
it took about 4 and 1/2 years, with sleep sleep and sleep some more, rest rest rest and the right medications
In context ↗ - God / Jesus · Helped a lot
Only Jesus got me through.
In context ↗ - SNRI · Not said
I’m on the highest dose of a SNRI
In context ↗ - Melatonin · Worse
Melatonin made me feel like I was lucid dreaming.
In context ↗ - Ambien · Worse
Ambien- ugh! That stuff is from the devil- weird dreaming and acting out the dream…
In context ↗ - Vitamin D and time outside · Helped
I started getting better in the summer of 2023 when I spent a lot of time outside. ... it’s crucial you take Vitamin D daily
In context ↗ - pacing · Not said
I still have to pace what I do everyday
In context ↗
Approaches: Alternative therapies · Other drugs and medicines · Radical rest · Supplements
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. 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 |
|---|---|---|---|
| February 2020 | COVID-19 onset, later hospitalised with pneumonia; too ill to keep workingabout 2 months after getting COVID in February of 2020In context ↗ | Severe | |
| about 2.5 years after onset | roach infestation in rented apartment; paranoia, psychosis, sleeping around the clockabout 2.5 years after getting ill it turned out the apartment I rented after losing my house had roaches in itIn context ↗ | Severe | |
| summer 2023 | started getting better spending a lot of time outsideI started getting better in the summer of 2023 when I spent a lot of time outside.In context ↗ | Not stated | Vitamin D and sun exposure |
| December 2024 | able to work two days a week, do housework and errands, with pacingNow I can work about 2 days a week, do laundry, clean the house, run errands but I have to make sure I get enough sleep and pace myself.In context ↗ | Mild | |
| January 2025 | head cold brought back tinnitus, headache and sleep attacksI got a head cold about 3 weeks ago. I hadn’t been sick since the initial COVID infection.In context ↗ | Mild | |
| February 2025 | still pacing and needing long sleeps, not back to their old selfI still have to pace what I do everyday, still sleep 13-15 hours 2-3 times a weekIn context ↗ | Mild |
Adverse events
- Melatonin“Melatonin made me feel like I was lucid dreaming.” In context ↗ Side effects
- Zolpidem (Ambien)“Ambien- ugh! That stuff is from the devil- weird dreaming and acting out the dream…” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Tinnitus
my tinnitus kicked in at a moderate intensity
In context ↗ - Headaches & migraine
same with headache ( same characteristics)
In context ↗ - Sleep problems
still sleep 13-15 hours 2-3 times a week
In context ↗ - POTS & dysautonomia
I was also extremely dizzy in my head.
In context ↗ - Mast cell (MCAS) & allergies
my hives were SO BAD
In context ↗ - Anxiety & low mood
treatment resistant depression
In context ↗ - Gut problems
certain smells made me quite nauseated
In context ↗
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