Long COVID
Moderate → much betterNeeds ongoing treatment
Long COVID with breathlessness and brain fog, much better with rabeprazole and vegan diet
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2022
In their words
- Condition: Long COVID
I had delta covid bilateral pneumonia which resulted in severe long covid
In context ↗ - At worst: Moderate
I have been struggling to breath throughout the day ... I actually cant function without it
In context ↗ - Now: Much better
Recently went back to full blown normal duties (1 year later post covid) at my physically demanding job. ... I have maybe 1-2 brief heart pains a day along with my usual elevated heart rate since covid.
In context ↗
Read from 71 of their posts and comments; links to the 36 this page draws on
Summary
A person developed long COVID after delta pneumonia, with breathlessness, blurred vision, burning hands and feet, brain fog and chest pain. Rabeprazole gave them near all-day breathing relief and going vegan eased bloating; glasses corrected their blurred vision. A hemorrhoid ligation six months in was followed by lasting small-fibre neuropathy, and by late 2022 they were back at their physically demanding job but still symptomatic.
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What they tried
What they credit
Also tried
glasses (regular)· Helpedgiving blood / blood draws· Helped · wore offLions Mane· HelpedVapocool MAX lozenges· Helpeddrinking lots of water· HelpedRabeprazole (PPI)· Helpedreturning to a normal sleep schedule· HelpedPepto· Helpedcolonoscopy prep· Helpedamoxicillin· Helpedprism glasses· HelpedBenadryl / antihistamines (Blexten)· No changeBenadryl / antihistamines (Blexten)· No changePepcid / famotidine· No changeinhaled corticosteroids / asthma inhaler· No changebreathwork· No changetrazodone· No changevitamins / supplements· No changecolchicine· No changeanti-histamine approach / low-histamine diet· No changeHisDAO (DAO enzyme)· No changefluvoxamine· No changemyotape / nose breathing during sleep· No changesertraline· No changeVortioxetine· No changeNAC· No changeprobiotic· No changeGabapentin· Worseexercising· Worsehemorrhoid ligation· Much worseGingko· Not saidintermittent fasting· Not saidno-sodium diet· Not saidCoQ10· Not saidTMG· Not said
Their words about each treatment
- hemorrhoid ligation · Much worse
I did a hemorrhoid ligation 6 months post covid on the 1 hemorrhoid they thought was the main issue
In context ↗ - glasses (regular) · Helped
regular glasses solved my blurred vision, but my eyes were still in pain
In context ↗ - giving blood / blood draws · Helped
My symptoms vanish when I give blood.
In context ↗ - Gabapentin · Worse
It stopped my burning hands and feet, but since I have *long covid blurred vision*, it made that **a lot** worse.
In context ↗ - Lions Mane · Helped
I do notice maybe a 5% increase in my brain activity.
In context ↗ - Gingko · Not said
Probably worked the best in comparison to Gingko and the likes, but still not good enough.
In context ↗ - Vapocool MAX lozenges · Helped
nothing works but immediate and temporary relief by vapocool max
In context ↗ - Benadryl / antihistamines (Blexten) · No change
anti histamines do nothing for mine. in fact no medication does
In context ↗ - drinking lots of water · Helped
I used to drink lots of water and I think that helped.
In context ↗ - Rabeprazole (PPI) · Helped
But to my surprise, a morning PPI 30 minutes before my first meal ***significantly*** helps with breathing for almost an entire day (tapers off at night).
In context ↗ - returning to a normal sleep schedule · Helped
It did eventually disappear when I returned to a normal sleep schedule.
In context ↗ - Pepcid / famotidine · No change
did nothing for me
In context ↗ - Pepto · Helped
VapoCOOL Max and Pepto oddly seemed to be better relief than any inhaler, breathwork or pepcid could provide.
In context ↗ - inhaled corticosteroids / asthma inhaler · No change
It increased my PFT by 1%. So essentially useless.
In context ↗ - trazodone · No change
def better tranqs, just highlighting how traz didnt work for me
In context ↗ - vitamins / supplements · No change
I also don't find relief in any vitamins
In context ↗ - colonoscopy prep · Helped
My colonoscopy prep certainly made my gut issues vanish.
In context ↗ - colchicine · No change
I can tell you from experience colchicine does not stop my myo chest pains
In context ↗ - vegan diet · Helped
But it has helped quite a bit and I know my blood vessel/heart aren't taking a beating.
In context ↗ - intermittent fasting · Not said
I usually do intermittent fasting by skipping breakfast.
In context ↗ - amoxicillin · Helped
recently finished a cycle of amoxicillin for suspicion of sinus infection. haven't noticed it since.
In context ↗ - anti-histamine approach / low-histamine diet · No change
When I did it I didn't notice a difference.
In context ↗ - HisDAO (DAO enzyme) · No change
I was on HistDAO by xymogen. Sadly can't say I noticed any difference, which is why I stopped using it.
In context ↗ - fluvoxamine · No change
fluvoxamine did absolutely nothing for my mental state
In context ↗ - no-sodium diet · Not said
I actually did a no sodium diet even though I knew it has negatives
In context ↗ - myotape / nose breathing during sleep · No change
I used myotape to only nose breath during sleep, but my oxygen drops by 1%.
In context ↗ - prism glasses · Helped
Things are clear, but I feel off using them.
In context ↗ - sertraline · No change
Option 6: Neither did anything.
In context ↗ - Vortioxetine · No change
I can tell you the Vortioxetine doesn't do a damn thing.
In context ↗ - exercising · Worse
I felt like crap and actually regret exercising because of my undiagnosed myo.
In context ↗ - CoQ10 · Not said
maintain heart vitamins like Coq10 and TMG
In context ↗ - NAC · No change
nac doesnt do shit
In context ↗ - probiotic · No change
I tried that probiotic also, did nothing for the brain fog.
In context ↗
Approaches: Diet
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 |
|---|---|---|
| September 2021 | delta COVID with bilateral pneumonia, oxygen fell to 91%, not hospitalisedI had bilateral delta pneumonia that dropped my oxygen to 91% spO2 (which is now always 95%+).In context ↗ | Moderate |
| early 2022 | brutal chest pain and all-day breathlessness in the first monthsI had chest pain from covid, though it is a lot less, was brutal the first initial months.In context ↗ | Moderate |
| July 2022 | morning PPI gave near all-day breathing reliefa morning PPI 30 minutes before my first meal ... helps with breathing for almost an entire dayIn context ↗ | Moderate |
| November 2022 | back to full duties at a physically demanding jobRecently went back to full blown normal duties (1 year later post covid) at my physically demanding job.In context ↗ | Mild |
| 2022-11-29 | heart flutter after a day of errands; went to ER3 hours in my heart started to throb out of my chest in unpredictable and rapid throbs.In context ↗ | Mild |
| December 2022 | working but still symptomaticfor me the symptoms are still very much obviousIn context ↗ | Mild |
Adverse events
- AHCC and medicinal mushrooms (reishi, shiitake, maitake)“Didn't work for me and resulted in headaches.” In context ↗ Side effects
- Gabapentin (Neurontin)“it made that **a lot** worse” In context ↗ Made symptoms worse
- Gabapentin (Neurontin)“I also felt tipsy like my brain was scrambled, so I would say it did not help the brain fog.” In context ↗ Side effects
- Other surgery (adrenal, lung, venoplasty)“My entire body from the waist down, including my groin was in searing sharp nerve pain.” In context ↗ Nerve pain
- Other surgery (adrenal, lung, venoplasty)“until I finally caved and went to ER for a Percocet” In context ↗ ER visit
- Prism glasses“Things are clear, but I feel off using them.” In context ↗ Side effects
- Everyday exercise and activity“I felt like crap and actually regret exercising because of my undiagnosed myo. It correlated to the increasing chest pains.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaSleep problemsVision problems
Their words about their symptoms
- Brain fog
the dead head feeling and fog is still very much present
In context ↗ - POTS & dysautonomia
tilt table you need 30+ bpm, mine was 28 at its peak and has since lowered a little bit
In context ↗ - Mast cell (MCAS) & allergies
I have allergies also and recently finished a cycle of amoxicillin for suspicion of sinus infection.
In context ↗ - Sleep problems
which was true, I wasn't sleeping very much
In context ↗ - Headaches & migraine
yep, not so much headaches anymore
In context ↗ - Gut problems
Now with Long Covid I have full blown dysmotility and my diet is severely restricted
In context ↗ - Breathlessness
I have been struggling to breath throughout the day like most long haulers since day 1
In context ↗ - Heart symptoms & palpitations
I have maybe 1-2 brief heart pains a day along with my usual elevated heart rate since covid
In context ↗ - Muscle weakness
my legs as a whole have generally been weaker ever since
In context ↗ - Neuropathy & tingling
I no longer tingle, I just have the constant burning now (small fiber neuropathy)
In context ↗ - Flu-like symptoms
I have had sore throat ever since covid months ago
In context ↗ - Vision problems
I have had the same blurred vision (and soreness) that gets worse as the day progresses
In context ↗
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