Long COVID
Severe → somewhat betterIll 4 years before improving or writing
Mostly bedridden with long COVID, now somewhat better with time
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Oct 2024
In their words
- Condition: Long COVID
I have been dealing with long covid since December 2020 - and have tested positive 4 times
In context ↗ - At worst: Severe
i haven’t left the house in months and am basically bedridden
In context ↗ - Now: Somewhat better
I’m on the upswing (I hope). Still nowhere near myself - I’d say I’m at 40%
In context ↗ - Began after: COVID
the worst version of it was December 2020 - the 1st time I had it - which was when my long Covid symptoms started
In context ↗
Read from 33 of their posts and comments; links to the 25 this page draws on
Summary
A 54-year-old New York merchandiser whose long COVID symptoms began after a severe December 2020 infection and worsened after later reinfections; in 2023 she was mostly bedridden at '5% of my former fit self'. Wildfire smoke and a severe allergic reaction triggered flares. She credited time as she improved to about 40–50% by late 2024, after the allergic reaction had dropped her from 65% to 10–15%; steroids, supplements and nerve blocks gave little lasting help, and Cymbalta brought 30 lb weight gain.
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What they tried
What they credit
Also tried
heating pad· HelpedBiofreeze· Helpedsteroids· Helped · wore offbeta blockers· Helpedover the counter melatonin (OLLY SLEEP BlackBerry gummies)· HelpedDLPA· Helped · wore offBotox· Helpedstellate ganglion block· No changeIV infusions· No changesupplements· No changeAmlodipine· No changeivermectin· No changeCymbalta· WorseNAC· Not saidquercetin· Not saidnatto· Not saidStatin· Not saidnerve injections in my neck· Not saidvitamin B injections· Not saidEpiretinal membrane surgery· Not said
Their words about each treatment
- heating pad · Helped
Used the heating pad on my ribs during the worst of the Covid pain - it helped a lot
In context ↗ - Biofreeze · Helped
so did using Biofreeze on my back during the worst of my breathing issues - it really helped clear things and eased the breathing issues
In context ↗ - stellate ganglion block · No change
I have had them in the past and they have been helpful neurologically
In context ↗ - steroids · Helped
Same results! ... Helped a lot - but short term.
In context ↗ - IV infusions · No change
I’ve done steroids and IV infusions- supplements and I am just as a bad as ever
In context ↗ - supplements · No change
I’ve tried every supplement with no luck.
In context ↗ - Amlodipine · No change
My doc has me on Amlodipine and my blood pressure has still been high.
In context ↗ - beta blockers · Helped
My blood pressure has been sky high (beta blockers have helped with that)…
In context ↗ - over the counter melatonin (OLLY SLEEP BlackBerry gummies) · Helped
I was surprised to see how much an over the counter melatonin works.
In context ↗ - DLPA · Helped
I just started DLPA and it’s been great for the brain fog and some energy!
In context ↗ - Botox · Helped
my neurologist injected Botox in my back muscles ... But helpful
In context ↗ - NAC · Not said
Just started these as well
In context ↗ - Statin · Not said
I am on ten different meds now ... Statin
In context ↗ - nerve injections in my neck · Not said
Had nerve injections in my neck because I thought it would help.
In context ↗ - vitamin B injections · Not said
I have a deficiency so I do injections monthly instead of supplements now.
In context ↗ - Cymbalta · Worse
I’m wishing I would have avoided Cymbalta - 30 plus pounds gained and I’m STILL massively depressed
In context ↗ - LDN · Helped a lot
I took my first dose Monday and I am feeling great today. More alert and not fatigued!!
In context ↗ - ivermectin · No change
We just tried 12mg ivermectin but had no results.
In context ↗ - Epiretinal membrane surgery · Not said
I had to have an Epiretinal membrane surgery on my left eye - vision was fine before long Covid.
In context ↗ - time · Helped
time - time was my only help
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| December 2020 | long COVID symptoms began with a severe first COVID infectionthe worst version of it was December 2020 - the 1st time I had it - which was when my long Covid symptoms startedIn context ↗ | |
| December 2022 | fourth COVID infection worsened long COVIDMy long Covid started in 2020 and became hell after this last (my 4th) Covid infection in December of 2022.In context ↗ | |
| June 2023 | flare-up after Canadian wildfire smokeI have had one of my worst flare ups ever - the fires were blowing here three weeks agoIn context ↗ | |
| August 2023 | bedridden and out of workCurrently feel like I am 5% of my former fit self - miss me and my old very active lifeIn context ↗ | |
| July 2024 | improving physicallyGetting better physically but not mentally ... I also feel like I’m at 50%In context ↗ | Time and spontaneous remission |
| August 2024 | severe allergic reaction to airborne allergen set off a flareI had a severe allergic reaction to some random airborne allergen, which set off my current LC flare up. I am back down to (10-15% myself).In context ↗ | |
| September 2024 | felt alert and not fatigued after first LDN dosesI took my first dose Monday and I am feeling great today. More alert and not fatigued!!In context ↗ | Low-dose naltrexone |
| September 2024 | on the upswing, about 40% of herselfI’m on the upswing (I hope). Still nowhere near myself - I’d say I’m at 40%In context ↗ |
Adverse events
- Corticosteroid pulses“Steroid helped my breathing issues but I am having horrible GI issues and headaches” In context ↗ Gut side effects
- Methylation support (unspecified)“vitamin B reactions (can only take any B via injection/IV otherwise I develop rashes) ... I was getting cystic acne from vitamin B” Allergic reaction / anaphylaxis
- Duloxetine (Cymbalta)“I’m wishing I would have avoided Cymbalta - 30 plus pounds gained and I’m STILL massively depressed” In context ↗ Side effects
- Low-dose naltrexone“Monday I took it late and was wired and couldn’t fall asleep” In context ↗ Insomnia from treatment
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Brain fog
it’s been fatigue, weakness and brain fog that are the worst
In context ↗ - Gut problems
I am having digestive issues - (like my digestion becomes paralyzed) - IBS - nausea - hiatal hernia - heartburn
In context ↗ - Vision problems
Vision is still bad and blurry but it corrected the membrane.
In context ↗ - Neuropathy & tingling
having internal vibrating/humming feeling like zaps on and off
In context ↗ - POTS & dysautonomia
My blood pressure has been sky high (beta blockers have helped with that)
In context ↗ - Heart symptoms & palpitations
Had horrible heart pounding issues
In context ↗ - Sleep problems
Not sleeping well
In context ↗ - Anxiety & low mood
I’m STILL massively depressed
In context ↗ - Breathlessness
Can’t get a full breath in - only way to explain it is that I can feel paralyzed to breathe from the diaphragm down
In context ↗ - Muscle weakness
Noticing weakness coming on in my extremities bad the last few weeks
In context ↗ - Temperature regulation
bizarre sweating issues - RIGHT sides only
In context ↗ - Mast cell (MCAS) & allergies
Allergies seem to trigger my flares
In context ↗ - Headaches & migraine
I am having horrible GI issues and headaches
In context ↗
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