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Long COVID Severe → somewhat betterIll 13 months before improving or writingNeeds ongoing treatment

Bedbound for months with severe long COVID, now moderate and slowly recovering with pacing

Kestrel 51568 on RedditLast post Jan 2025

Condition
Long COVID
At worst
Severe (mostly bedbound)
Ill before improving or writing
13 months
Last post
Jan 2025
In their words
  • Condition: Long COVIDI also found a ton of mould in my bedroom, right in the midst of LC onset, and I also too have ME/CFS. In context ↗
  • At worst: SevereI was severe bedbound after onset of LC for a month, then slowly was able to walk around the house and do basic chores.. but that's where I was stuck for 10 months In context ↗
  • Now: Somewhat betterME/CFS type from severe bedbound (December 2023) to housebound to moderate with pacing. In context ↗
  • Began after: COVIDThis was my 5th or 6th infection I think. Never experienced LC before this.
  • Says they never had: POTS & dysautonomiaI don't have POTS but yes, I basically did a brief cardio workout
Read from 144 of their posts and comments; links to the 44 this page draws on

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Summary

They have had severe long COVID since December 2023 and were bedbound for months; they were found to have airway inflammation (FENO 155ppb). Inhaled corticosteroids improved their breathing and heart rate within a day, and extra-fine particles improved breathing further within days. Cutting carbs and sugar briefly removed their limb fatigue and crashes. Food and overdoing activity could set them back; two infections in 2023, seven months apart, left them severe for months, then moderate and slowly recovering only with aggressive pacing.

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What they tried

What they credit

Pacing and aggressive rest· Helped a lotRed meat (170-200g most days)· Helped a lotCutting out wheat, eggs and dairy (gluten-free, low carb)· Helped a lot · main · wore offCutting out wheat, eggs and dairy (gluten-free, low carb)· Helped a lot · main · wore offCutting out wheat, eggs and dairy (gluten-free, low carb)· Helped a lot · main · wore offIron supplements· HelpedB12· HelpedGiving up coffee· HelpedGarmin fitness watch and O2 Ring· Helped

Also tried

Extra fine particle inhaled corticosteroids (Qvar, Kelhale)· Helped a lotSupplemental oxygen (oxygen concentrator)· Helped a lotTiotropium Bromide (long-acting bronchodilator)· HelpedCaffeine pills (Pro Plus)· HelpedCold showers· HelpedAspirin and paracetamol· HelpedOxaloacetate (BenaGene)· No changeCPAP· WorseFamotidine (Pepcid)· WorseALCAR (acetyl-L-carnitine)· WorseHot tub· WorseVitamins and supplements (general)· WorseADHD stimulants· Much worseIntense stairmaster workouts· Much worseVitamin D 50k· Much worseGadolinium contrast (MRI)· Much worseBeta blocker· Much worseTaurine· Not saidSIM01· Not saidNasal rinsing· Not saidWhey protein· Not saidProbiotics and fermented foods· Not said
Their words about each treatment
  • CPAP · WorseWhen I used my CPAP years ago, it was causing me further issues with waxing/waning and arousals. In context ↗
  • ADHD stimulants · Much worsethe stimulants really put a huge stress on me, and ended up feeling really unwell In context ↗
  • Intense stairmaster workouts · Much worsemy intense stairmaster workouts 100% pushed me in to In context ↗
  • Vitamin D 50k · Much worseI did this (50k) and a week later or less (it takes time for your body to start processing it) I was in the ER with my heart going mental In context ↗
  • Gadolinium contrast (MRI) · Much worseI had an extremely bad reaction to Gadolinium. In context ↗
  • Beta blocker · Much worseI stopped the beta blocker they had me on (they made me worse, fucked with my oxygen levels moreso and my ability to move around, get out of bed) In context ↗
  • Iron supplements · HelpedI gave up all iron supplements (even though initially this how I raised levels and started to feel much better) In context ↗
  • B12 · HelpedCovid trashed my ferritin and B12, but I brought them up which improved everything dramatically. In context ↗
  • Extra fine particle inhaled corticosteroids (Qvar, Kelhale) · Helped a lotInhaled corticosteroids changed my life. In context ↗
  • Tiotropium Bromide (long-acting bronchodilator) · HelpedWhat got me from bedbound to housebound and more was taking Qvar and Tiotropium Bromide to reduce inflammation and open my airways. In context ↗
  • Supplemental oxygen (oxygen concentrator) · Helped a lotAt my worst I used to use a portable one, and it was like night and day. In context ↗
  • Pacing and aggressive rest · Helped a lotME/CFS type from severe bedbound (December 2023) to housebound to moderate with pacing. In context ↗
  • Famotidine (Pepcid) · WorseSame. Ultra depression. In context ↗
  • Giving up coffee · Helpedremoving coffee specifically over the last month (9 months on), not caffeine (I take pills now) has given me such a dramatic improvement in GI symptoms In context ↗
  • Red meat (170-200g most days) · Helped a lotI'm convinced eating red meat most days has done more for my recovery than most things aside from rest In context ↗
  • ALCAR (acetyl-L-carnitine) · WorseDay 2 500mg my bowels threw an absolute fit and it felt like I'd gone back in time. Bedbound with diahrea and bloating, gas the works. In context ↗
  • Caffeine pills (Pro Plus) · Helpedcaffeine itself isolated in pill form is totally fine for me and helps with things In context ↗
  • Taurine · Not saidTook my first 1000mg capsule of Taurine just now. In context ↗
  • Garmin fitness watch and O2 Ring · Helpedowning a Garmin or other fitness watch where you can track physiological stress, HRV, resting/sleeping heart rate on a daily/weekly basis is invaluable in regards to pacing In context ↗
  • Hot tub · Worse3rd time using it, got out after 20 minutes.. body felt immediately wrong.. walked the dog 2 minutes down the street and BAM, back to 150bpm adrenaline dumping bullshit. In context ↗
  • Cold showers · HelpedI love finishing my shower with cold water! It definitely does something to calm the system. In context ↗
  • Cutting out wheat, eggs and dairy (gluten-free, low carb) · Helped a lotWithin a few days I think I'm free of my long standing ME/CFS symptoms, and all I did was cut out wheat, eggs and dairy. In context ↗
  • Oxaloacetate (BenaGene) · No changeI tried 500mg. Didn't do shit. In context ↗
  • SIM01 · Not saidI'm staying the course and I'll do 6 months of this as per their study In context ↗
  • Aspirin and paracetamol · HelpedI feel much better after aspirin and paracetamol, my nose has cleared and the aches have gone In context ↗
  • Nasal rinsing · Not saidthat's something I've only started doing recently and I've wondered if that could actually be causing my new onset of these pains In context ↗
  • Vitamins and supplements (general) · WorseVitamins never did anything for me and seem to cause more bother. In context ↗
  • Whey protein · Not saidI can't take whey due to histamine In context ↗
  • Probiotics and fermented foods · Not saidAnyone else get headaches from taking something like this - probiotics, gut bacterium strains, etc? In context ↗

Approaches: Diet · Pacing · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset6 mo12 mo

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
WhenWhat happenedWhere they wereAfter
December 2023Acute severe long COVID/ME-CFS onset, bedboundME/CFS type from severe bedbound (December 2023) to housebound to moderate with pacing. In context ↗Severe
early 2024Able to walk around the house and do basic chores, then stuck there for monthsthen slowly was able to walk around the house and do basic chores.. but that's where I was stuck for 10 months In context ↗ModeratePacing and the energy envelope
August 2024Inhaled corticosteroids for airway inflammation; heart rate and breathing improved within a daywithin 24 hours it was immediately obvious I was improving - my heart rate started coming down In context ↗Moderate
October 2024Generally OK if pacing and limiting walking outsideprovided I don't walk for more than 5-10 minutes outside I'm generally ok. Took 10 months to get to this stage. In context ↗ModeratePacing and the energy envelope
November 6, 2024Cutting wheat, eggs, dairy and coffee; limb fatigue and crashing briefly goneWithin a few days I think I'm free of my long standing ME/CFS symptoms, and all I did was cut out wheat, eggs and dairy. In context ↗Mild
November 12, 2024Crashed after eating a suspected trigger food, back to bedI was doing so well, then I ate the wrong thing. Nightmare Morning, back to bed. In context ↗Moderate
November 14, 2024Crashed after third hot tub session and a short dog walknow I'm aggressively resting and back to being totally housebound until I recover my baseline. In context ↗Moderate
December 2024Viral infection temporarily lifted ME/CFS for about a weekI was bloody cured of ME/CFS and I could do anything and my heart rate would remain low. In context ↗Near normal
December 2024Crashed after the infection's effect wore offI'm really struggling to keep my heart rate down now it's back.. even just walking slowly around the house it's spiking 100-120+bpm. In context ↗Moderate
January 12, 2025Turned a corner after two viral infections; moderate and pacingI feel I have turned a corner significantly in the last 2 months and I put this down to catching 2 viral infections almost back to back. In context ↗Moderate

Adverse events

  • Beta-blockers (unspecified)“I stopped the beta blocker they had me on (they made me worse, fucked with my oxygen levels moreso and my ability to move around, get out of bed)” In context ↗ Made symptoms worse
  • “the one they originally prescribed me was dry powder and while it opened my airways it made me worse” In context ↗ Made symptoms worse
  • “using a broncodilator before treating the inflammation made symptoms worst, especially SOB and chest pain” In context ↗ Made symptoms worse
  • L-carnitine“Day 2 500mg my bowels threw an absolute fit and it felt like I'd gone back in time. Bedbound with diahrea and bloating, gas the works.” In context ↗ Gut side effects
  • Iron infusion / ferritin repletion“they aggravated my digestive system and contributed to mild episodes, where I would taste iron, feel horrible and short of breath briefly etc until it passed” In context ↗ Gut side effects
  • Vitamin B12“even B vitamins made me depressed/angry” In context ↗ Mood or psychiatric effects
  • Stimulants (unspecified)“the stimulants really put a huge stress on me, and ended up feeling really unwell, short of breath etc just walking around the house” In context ↗ Made symptoms worse
  • Hyperthermia and sauna“3rd time using it, got out after 20 minutes.. body felt immediately wrong.. walked the dog 2 minutes down the street and BAM, back to 150bpm adrenaline dumping bullshit” In context ↗ Made symptoms worse
  • “I had an extremely bad reaction to Gadolinium. It was the first time I had adrenaline dumps the very same night, 8-12 hours later. Woke up at 2am and thought I was having a heart attack.” In context ↗ Side effects
  • Whey protein“I can't take whey due to histamine” In context ↗ Side effects
  • Probiotics and fermented foods“Anyone else get headaches from taking something like this - probiotics, gut bacterium strains, etc?” In context ↗ Side effects
  • CPAP and sleep apnoea treatment“When I used my CPAP years ago, it was causing me further issues with waxing/waning and arousals.” In context ↗ Other

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
  • Post-exertional malaiseAnd it all comes back; the aching limbs, the smelling of ammonia sweat, the fatigue, the being forced to walk like a snail, the nightmares, the wakenings. In context ↗
  • Brain fogJust doing the simplest things really infuriates me, as I can't follow the instructions or steps and remember what I'm supposed to be doing. In context ↗
  • Heart symptoms & palpitationsI have lots of ectopic beats. In context ↗
  • BreathlessnessTachycardia, repeated sloppy shits and short of breath all morning. In context ↗
  • Sleep problemsthe nightmares, the wakenings. In context ↗
  • Headaches & migrainemost days I wake up with a headache, clearly starved of o2 overnight In context ↗
  • Mast cell (MCAS) & allergiesIt is the food/allergy/MCAS - wheat, eggs and dairy so far I have proved are my culprits. In context ↗
  • Flu-like symptomsthen I started getting a soare throat, higher than usual heart rate In context ↗
  • Anxiety & low moodI get very depressed and down during PEM flares In context ↗
  • TinnitusWeird whooshing in the ears. In context ↗
  • Muscle weaknessAnd my upper and lowerlimb fatigue is just.. gone. In context ↗
  • Temperature regulationAlso, regular night sweats and awakenings? In context ↗

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