Long COVID
Severe → relapsedIll 5 years before improving or writing
Bedbound by long COVID, then walking 4,000 steps before a full relapse
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I’ve been ill since my second Moderna vaccine followed by a severe Covid exposure which affected my digestive tract.
In context ↗ - At worst: Severe
I am basically bed bound.
In context ↗ - Now: Relapsed
I may get slightly better then as soon has anything viral comes my way I am literally back to square 1 .
In context ↗ - Began after: a vaccination
I’ve been ill since my second Moderna vaccine followed by a severe Covid exposure which affected my digestive tract.
In context ↗
Read from 122 of their posts and comments; links to the 53 this page draws on
- Apr 2025
- Mar 2022
- Jul 2026
- Mar 2023
- Jan 2023
- Aug 2022
- Jan 2022
- Mar 2022
- Mar 2022
- Mar 2024
- Apr 2022
- Jul 2022
- Sep 2022
- Jan 2024
- Jan 2023
- Jan 2023
- Nov 2024
- Oct 2022
- Oct 2022
- Nov 2022
- Dec 2022
- Jan 2023
- May 2023
- Jul 2024
- Jul 2023
- Dec 2023
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- Dec 2024
- Jun 2025
- Sep 2026
- Sep 2026
- Nov 2022
- May 2023
- Jun 2023
- Dec 2024
- Jan 2025
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- Mar 2025
- Oct 2022
- May 2023
- Jul 2023
- Jan 2024
- Sep 2024
- Sep 2025
- Jul 2022
- Jun 2025
- Sep 2022
- Dec 2021
- Oct 2022
- Feb 2023
- Jan 2024
- Nov 2025
Summary
Canadian long hauler ill since 2021, bed bound by early 2022 with facial and throat swelling, gut problems and crushing fatigue. Antihistamines, steroids and a low-histamine diet gave only slight relief. By January 2024 they could walk 4,000 steps a couple of times a week, but an emotional event in May 2024 caused a full relapse; viral illnesses repeatedly set them back, leaving 25–30 symptoms and no gains from supplements or drugs.
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What they tried
Also tried
acupressure points· Helped a lotBenadryl, Claritin, Reactin, Blexten· Helped · wore offBenadryl, Claritin, Reactin, Blexten· Helped · wore offBenadryl, Claritin, Reactin, Blexten· Helped · wore offBenadryl, Claritin, Reactin, Blexten· Helped · wore offPepcid AC· Helpedlow histamine diet· Helpedrest / dark quiet room· Helpedomega 3· Helpedhystaquel· Helpedsteroids (prednisone pills, IV steroids)· Helpednaturopath· HelpedAtivan· Helpedprescription cough syrup with codeine· HelpedMonostat cream· Helpedhoney and black pepper· Helpeddenture ointment· Helpedelimination diet· Helpedchanging geographic area and altitude· Helped · wore offsupplements· No changeCBD· No changeSingulair· No changeprescription antacids / PPI· No changeherbal remedies· No changefasting· No changeTylenol and Advil· No changecalcium supplements· Worselymphatic drainage technique· Worsegrounding mat· Worsevitamins· Much worsecastor oil pack· Much worseantibiotics, doxycycline· Not saidepi pen· Not saidcharcoal· Not said
Their words about each treatment
- Benadryl, Claritin, Reactin, Blexten · Helped
Antihistamines Benadryl bring me some relief. 2 years out still have the symptoms
In context ↗ - Pepcid AC · Helped
I have tried the H1 H2 blockers mentioned in the sub. Plus low histamine diet. Those have helped somewhat.
In context ↗ - low histamine diet · Helped
Low histamine diet. ( some what helpful )
In context ↗ - rest / dark quiet room · Helped
Only thing that helps is a dark quiet room and laying down.
In context ↗ - vitamins · Much worse
Vitamins only make things much worst as well as most medications.
In context ↗ - omega 3 · Helped
Started omega 3 and hystaquel showing some slight improvement s
In context ↗ - supplements · No change
all of the antihistamines, supplements, prescriptions, diet changes, cautions all seem for nothing
In context ↗ - CBD · No change
I tried CBD and had no relief.
In context ↗ - steroids (prednisone pills, IV steroids) · Helped
When I have a severe flare up which is swelling in the face and throat they give me steroids iv or pills. It sometimes helps sometimes not.
In context ↗ - naturopath · Helped
The supplements did help but one bottle of pills was 130 dolllars for 120 pills max needed a day 6.
In context ↗ - Ativan · Helped
The only thing that works for me is Atavan.
In context ↗ - Singulair · No change
I was prescribed singular but it didn’t help.
In context ↗ - antibiotics, doxycycline · Not said
my GP gave me 8 days of antibiotics to clear up what ever it was.
In context ↗ - prescription antacids / PPI · No change
Right now it’s stomach pain with extra bile that won’t stay down even with the ppi.
In context ↗ - herbal remedies · No change
plus herbal remedies nothing seems to help
In context ↗ - prescription cough syrup with codeine · Helped
It was the only thing that helped me. Only the prescribed one worked for me.
In context ↗ - calcium supplements · Worse
if I consume dairy, calcium supplements, or sugar. My heart rate increases the feeling of skipped beats.
In context ↗ - Monostat cream · Helped
The only thing that stops it is Monostat cream
In context ↗ - acupressure points · Helped a lot
Acupressure points for me have been a huge help.
In context ↗ - fasting · No change
I have done the elimination diet, fasting, low histamine, supplements, antihistamines,Pepcid ac, natural path, specialists. There is not much improvement for me.
In context ↗ - honey and black pepper · Helped
Honey and black pepper for the win.
In context ↗ - denture ointment · Helped
The only thing that helps a bit is a denture ointment.
In context ↗ - epi pen · Not said
I carry Benadryl a epi pen
In context ↗ - elimination diet · Helped
Oral specialist has had me eliminate all fruit, nuts, and seafood.
In context ↗ - lymphatic drainage technique · Worse
if I try touching or doing any sort of lymphatic drainage technique it makes things way worse.
In context ↗ - castor oil pack · Much worse
I tried a castor oil pack, it was a short duration immediately felt extremely unwell.
In context ↗ - Tylenol and Advil · No change
Tylenol and Advil do nothing.
In context ↗ - charcoal · Not said
The odd supplement, charcoal, and watching what I consume.
In context ↗ - grounding mat · Worse
It was recommended and all it caused was a flare?
In context ↗ - changing geographic area and altitude · Helped
If I change my geographic area and altitude I’ve felt better it lasts about a day and a half after I get home
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. The chart starts 7 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| August 2021 | Symptoms began after second Moderna vaccine, starting with the earsfast forward Aug 2021 after second vaccine body started doing weird things started with my earsIn context ↗ | Not stated |
| March 2022 | Bed bound, unable to drive, crushing fatigue and food intolerancesI am basically bed bound.In context ↗ | Severe |
| March 2023 | Reinfection caught from a relative back from holiday; back to square oneI was exposed to a variant from Mexico end of March a relative was passing through after vacation. I got sick so I’m back to square one.In context ↗ | Severe |
| June 2023 | Second reinfection from a relative with a cold2nd time another relative came to stay and did not mention they were sick with a “cold”In context ↗ | Severe |
| January 2024 | Slow, gradual gain: could walk 4,000 steps a couple of times a week and brain fog lifted about 60%I can now walk 4000 steps a couple times a weekIn context ↗ | Mild |
| May 2024 | Complete relapse after an emotional eventI had an emotional event that happened in May and it was a complete relapse too. Still struggling to find my way out.In context ↗ | Moderate |
| March 2025 | Flare and downhill slide after MRI contrast, then dental workit put me into a bad 3 day flare and then a downhill slide for about 3 weeksIn context ↗ | Moderate |
| September 2025 | One near-normal morning, then a crash with no bottomNow I’m in a crash with no bottom it seems.In context ↗ | Severe |
| July 2026 | Still 25–30 symptoms; slight gains wiped out by any virusI may get slightly better then as soon has anything viral comes my way I am literally back to square 1In context ↗ | Moderate |
Adverse events
- “Vitamins only make things much worst as well as most medications.” In context ↗ Made symptoms worse
- Calcium“if I consume dairy, calcium supplements, or sugar. My heart rate increases the feeling of skipped beats” In context ↗ Heart rhythm problems
- “I’m sitting on 100s if dollars of pills I can’t seem to tolerate.” In context ↗ Side effects
- Bilastine (Blexten, Bilaxten)“I was prescribed Blexten a new super antihistamine which promptly gave me a body rash.” In context ↗ Allergic reaction / anaphylaxis
- Diphenhydramine (Benadryl), Loratadine (Claritin), Cetirizine (Zyrtec), Bilastine (Blexten, Bilaxten)“now this week a reaction to a new antihistamine. A trip to the hospital for a steady heart rate of 110 bpm” In context ↗ ER visit
- Manual lymphatic drainage“if I try touching or doing any sort of lymphatic drainage technique it makes things way worse” In context ↗ Made symptoms worse
- Corticosteroid pulses“now a prescription for fast acting steroids that ruin what little sleep I get” In context ↗ Insomnia from treatment
- Castor oil and castor oil packs“I tried a castor oil pack, it was a short duration immediately felt extremely unwell. Wound up at the ER for tests on my allergic reactions.” In context ↗ Made symptoms worse
- Cetirizine (Zyrtec)“I had this with reactin” In context ↗ Heart rhythm problems
- Diphenhydramine (Benadryl)“I took a stupid amount of antihistamines and now find myself unable to recall yesterday, last week, last month.” In context ↗ Side effects
- “Had a rigorous dental cleaning last week, completely ruined my fragile baseline.” In context ↗ Made symptoms worse
- “it put me into a bad 3 day flare and then a downhill slide for about 3 weeks” In context ↗ Made symptoms worse
- “the vaccines I took pushed me over the edge” In context ↗ Made symptoms worse
- Grounding / earthing“It was recommended and all it caused was a flare?” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
It got somewhat better pushed my self into a relapse. Overdid it one day
In context ↗ - Brain fog
I took a stupid amount of antihistamines and now find myself unable to recall yesterday, last week, last month.
In context ↗ - POTS & dysautonomia
Dizzy unsteady on my feet.
In context ↗ - Mast cell (MCAS) & allergies
I now have idiopathic angioedema in my head and throat area.
In context ↗ - Sleep problems
I had horrible insomnia at one point I was functioning on 2 hours a night.
In context ↗ - Pain & fibromyalgia
I find I have overall body pains that come and go.
In context ↗ - Headaches & migraine
inability to eat a lot of foods, headache, ear pain, chest pain
In context ↗ - Gut problems
I also have ringing in the ears, bloating, stomach pain, diarrhea
In context ↗ - Light & noise sensitivity
my ears are so sensitive
In context ↗ - Breathlessness
gives me a feeling like I’m not getting enough air
In context ↗ - Heart symptoms & palpitations
Alcohol gives me stabbing chest pains now
In context ↗ - Muscle weakness
muscle aches insomnia, brain fog, left side weakness
In context ↗ - Neuropathy & tingling
My latest ailment is nerve pain in my hands and feet which keeps me awake most nights.
In context ↗ - Anxiety & low mood
the feelings of desperation that are steadily creeping in
In context ↗ - Flu-like symptoms
I just feel physically ill. It’s awful. Like a cross between morning sickness and the flu.
In context ↗ - Tinnitus
I also have ringing in the ears
In context ↗ - Temperature regulation
hot flashes, pain in joints
In context ↗ - Hair loss
My first year after the initial start of it all my hair was falling out at a incredible rate.
In context ↗