Long COVID
Severe → no benefitIll for 4.5 years
Bedridden with long COVID, then constant pain and no improvement from treatments
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 4.5 years
- Last post
- Apr 2025
In their words
- Condition: Long COVID
Had Covid back in Jan 2021 which later progressed into long covid and ushered in a plethora of debilitating symptoms
In context ↗ - At worst: Severe
I barely have the energy to go to the bathroom these days
In context ↗ - Now: No benefit
I'm physically worse and mentally dead.
In context ↗ - Began after: COVID
I contracted Covid back in early January
Read from 69 of their posts and comments; links to the 32 this page draws on
Summary
A Canadian man in his mid-40s caught COVID-19 in January 2021 and was bedridden for two weeks. A facial rash and neuropathy followed, and a first Pfizer dose in May 2021 made everything worse, adding burning skin pain, dermatographia and severe dysphagia. Over four years he reported no clear improvement from antihistamines, PPIs, Lyrica, nortriptyline, LDN or IVIG; prednisone briefly helped swallowing but worsened his facial rash. He could not work and was in constant pain.
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What they tried
Also tried
Raw ginger· Helpedgaviscon advance· HelpedIvabradine· Helpedbaths· HelpedProbiotics (Bio-k)· No changeRaw Garlic (2 cloves a day)· No changeRaw Garlic (2 cloves a day)· No changeantihistamines (cetirizine)· No changelow-histamine diet· No changenortriptyline· No changeranitidine and Pepcid AC· No changeranitidine and Pepcid AC· No changeamitriptyline· No changerifaximin· No changeXolair injections· No changepsilocybin· No changecbd· No changeLDN· No changeNizoral/Denoside cream· Worsecorticosteroids sprays· Worsefluvoxamine· WorsePrednisone· WorsePPIs· WorseMCT (the C8 kind)· WorseIVIg· WorseCOVID vaccination as treatment· WorseOmega/Krill· Not saidB12· Not saidVitamin C· Not saidZinc· Not saidCurcumin· Not saidTrazodone· Not saidpregabalin (Lyrica)· Not saidmirtazapine· Not saidelectrolytes· Not saidLiverCare· Not saidfasting till noon· Not saidOpioids· Not saidbenzos· Not said
Their words about each treatment
- Omega/Krill · Not said
Just a list of supplements I've been taking (possibly to my detriment): Omega/Krill, B12, Vitamin C, Zinc, Curcumin, Probiotics (Bio-k), Raw Garlic (2 cloves a day), Raw ginger.
In context ↗ - Probiotics (Bio-k) · No change
Probiotics have also done nothing in my case.
In context ↗ - Raw Garlic (2 cloves a day) · No change
I didn't do the garlic thing long enough to feel any different
In context ↗ - Raw ginger · Helped
the ginger was soothing I found for the sore throat but I think I went overboard with it
In context ↗ - antihistamines (cetirizine) · No change
I'm being doing antihistamines 10/10mg of cetirizine (morning and night) to no real help.
In context ↗ - low-histamine diet · No change
Tried a antihistamine diet, wasn't too religious about it but the feeling I get is that diet has little to do with what's happening.
In context ↗ - Nizoral/Denoside cream · Worse
I was prescribed Nizoral/Denoside cream which hasn't really helped, possibly made it worse.
In context ↗ - Trazodone · Not said
I'm talking Trazodone as well (for about a week or so )and am also feeling terrible burning in my sinuses.
In context ↗ - corticosteroids sprays · Worse
I tried corticosteroids sprays but they don't necessary do anything and I think seem to make matters worse.
In context ↗ - pregabalin (Lyrica) · Not said
I was prescribed pregabalin (Lyrical) early on, back in the summer, took it for a month, and I don't know if it helped to honest.
In context ↗ - nortriptyline · No change
Another neuro prescribed nortriptyline but I think it was too light a dosage to see any effects.
In context ↗ - fluvoxamine · Worse
I asked for fluvoxamine if we were going to go down that road. I did it for a month and felt like barely living.
In context ↗ - mirtazapine · Not said
I'm taking anti-histamines, electrolytes and probiotics now, with mirtazapine at night for the insomnia.
In context ↗ - electrolytes · Not said
I'm taking anti-histamines, electrolytes and probiotics now
In context ↗ - LiverCare · Not said
Not sure it's doing anything.
In context ↗ - Prednisone · Worse
Tried prednisone for the month which maybe helped the swallowing a little but made the rash on my face much worse.
In context ↗ - PPIs · Worse
I think PPIs made things worse for me.
In context ↗ - ranitidine and Pepcid AC · No change
Yes, tried ranitidine and Pepcid AC, no effect as well.
In context ↗ - gaviscon advance · Helped
little relief with pepcid and gaviscon advance
In context ↗ - Ivabradine · Helped
I'm currently taking a small dose of something called Ivabradine, seems to reduce hr by 10 bpm or so.
In context ↗ - amitriptyline · No change
tried lots of stuff. steroids, ssris (luvox / amitriptyline), low does psilocybin, cbd, and most recently LDN with no noticeable reduction with the imflammation nor anxiety.
In context ↗ - fasting till noon · Not said
I'm going to try fasting till noon for a couple of days
In context ↗ - rifaximin · No change
i did rifaxmin for borderline SBO, didn't seem to help.
In context ↗ - Xolair injections · No change
My allergist recommended the Xolair injections and after 3 months of treatment, I cant say I feel different.
In context ↗ - MCT (the C8 kind) · Worse
everything I put on my sebderm seems to further inflame my skin, including MCT (the C8 kind without lauric acid)
In context ↗ - psilocybin · No change
low does psilocybin
In context ↗ - cbd · No change
cbd, and most recently LDN with no noticeable reduction with the imflammation nor anxiety
In context ↗ - LDN · No change
most recently LDN with no noticeable reduction with the imflammation nor anxiety.
In context ↗ - IVIg · Worse
after 5 rounds, it hasn't helped the sfn and might have made it worse
In context ↗ - Opioids · Not said
Opioids, benzos, and lyrica is no why to live.
In context ↗ - baths · Helped
I've been good at keeping these rashes as bay through baths and such.
In context ↗ - COVID vaccination as treatment · Worse
Became much worse after the 1st dose of the pfizer vaccine
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 |
|---|---|---|
| early January 2021 | COVID-19, bedridden for two weeksI contracted Covid back in early January (bedridden for two weeks and no hospitalization)In context ↗ | Severe |
| March 2021 | facial rash with severe burning; small bouts of neuropathyin March, I developed some sort of facial rash around my nose, redness accompanied with severe burning and painIn context ↗ | Mild |
| early May 2021 | first Pfizer dose, then pins and needles and burning skinI got the 1st dose of the pfizer vaccine. Felt like shit again (as in January)In context ↗ | Moderate |
| July 2021 | many long-COVID symptoms piled up: extreme fatigue, leg weakness, palpitations, headachesmany LH symptoms I thought I was saved from, have now all appeared. Extreme fatigue, weakness in the legs, difficulty constructing sentences at timesIn context ↗ | Moderate |
| July 2022 | a year of dysphagia, 60 lbs lost, unable to work, severe depressionIt's been a year now living with a swallowing disorder and I have lost close to 60 lbs in the process. I am unable to workIn context ↗ | Severe |
| April 2025 | continued worsening over four years; small fibre neuropathy confirmed; IVIG did not helpI'm physically worse and mentally dead.In context ↗ | Severe |
Adverse events
- “Creams do nothing but make the matter worse.” In context ↗ Made symptoms worse
- Ketoconazole (Nizoral)“The first visit, I was prescribed Nizoral/Denoside cream which hasn't really helped, possibly made it worse.” In context ↗ Made symptoms worse
- Steroid nasal sprays (unspecified)“I tried corticosteroids sprays but they don't necessary do anything and I think seem to make matters worse.” In context ↗ Made symptoms worse
- Proton pump inhibitors (unspecified)“prescribed a PPI (suspected LPR), which ruined my stools for weeks now.” In context ↗ Gut side effects
- Corticosteroid pulses“I think I'm having a bad reaction to it, high HR” In context ↗ Heart rhythm problems
- Corticosteroid pulses“Tried prednisone for the month which maybe helped the swallowing a little but made the rash on my face much worse.” In context ↗ Made symptoms worse
- Fluvoxamine (Luvox)“I did it for a month and felt like barely living.” In context ↗ Mood or psychiatric effects
- “everything I put on my sebderm seems to further inflame my skin, including MCT (the C8 kind without lauric acid).” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Became much worse after the 1st dose of the pfizer vaccine” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Freaked out, thought I was having a heart attack, went to the ER” In context ↗ ER visit
- COVID vaccination as treatment“First pfizer shot ruined me. Gave me dysphagia, neuropathies and SFN.” In context ↗ Nerve pain
- IVIG / subcutaneous Ig“the side-effects were in some ways harder than LC to begin with.” In context ↗ Side effects
- IVIG / subcutaneous Ig“after 5 rounds, it hasn't helped the sfn and might have made it worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTinnitus
Their words about their symptoms
- Neuropathy & tingling
I still have the pins & needles on my arm/back/neck
In context ↗ - Mast cell (MCAS) & allergies
Covid killed my tolerances to allergies.
In context ↗ - Pain & fibromyalgia
constant toe/index finger pain and knee pain
In context ↗ - Headaches & migraine
massive head pressure headaches that came out of nowhere and remained for weeks
In context ↗ - Gut problems
Stools have been terrible this last year and a half with bouts of diarrhea and now chronic constipation.
In context ↗ - Brain fog
difficulty constructing sentences at times
In context ↗ - Muscle weakness
weakness in the legs
In context ↗ - Heart symptoms & palpitations
chest burning after little activity, palpitations
In context ↗ - POTS & dysautonomia
Same, mild pots.
In context ↗ - Sleep problems
mirtazapine at night for the insomnia
In context ↗ - Flu-like symptoms
sore throat (difficulty swallowing)
In context ↗ - Anxiety & low mood
I contemplate suicide a lot.
In context ↗ - Tinnitus
also hear a "static-like" noise every morning for hours
In context ↗ - Loss of smell or taste
after regaining my sense of sense
In context ↗