Long COVID
Severe → somewhat betterIll 4.5 years before improving or writingNeeds ongoing treatment
Housebound and partly bedbound with long COVID, somewhat better after Nalcrom and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
developed into Long Covid with PEM and ME-CFS
In context ↗ - At worst: Severe
I got partially bedbound and fully housebound after the crash.
In context ↗ - Now: Somewhat better
Slowly stabilizing now fortunately, but life does suck quite a bit at the moment.
In context ↗ - Began after: COVID
And then I got covid, which spiraled me to rock bottom.
In context ↗
Read from 48 of their posts and comments; links to the 27 this page draws on
Summary
Horizon 30985, a man in the Netherlands, caught COVID in March 2022 and partly recovered enough to graduate and work 28 hours a week. In late 2024 burnout and major surgery triggered a severe crash that left him housebound and partly bedbound. Nalcrom for MCAS eased gut pain, cut brain fog and restored weight; ivabradine, pacing and a powered wheelchair helped him stabilise, but by late 2026 he was still housebound and unable to work.
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What they tried
What they credit
Nalcrom (Cromolyn)· Helped a lot · mainheartrate-based pacing· Helped · mainGarmin watch and Fatigue Sense app· HelpedLevocetirizine· HelpedFamotidine· HelpedIvabradine· Helpedclass-2 compression garments· Helpedelectrolytes / ORS· Helpedglutenfree and dairy free diet· Helpedglutenfree and dairy free diet· HelpedOmega 3· HelpedVitaminD· Helped
Also tried
physical therapy / rehabilitation· Helpedradical rest· HelpedLow-FODMAP diet· Helpedlow histamine diet· Helpedcombined anti-inflammatory + bronchodilator inhaler· HelpedLamotrigine· HelpedMagnesiumbisglycinate· Helpedsilver splints· Helpeddynamic lying system (Levare Cura)· Helpedpowered wheelchair· HelpedUV-reactive prescription glasses· HelpedMindfulness (MBCT training)· WorseDAO enzyme supplement· Not saidparacetamol· Not saidstomach protector· Not saidmedical fiber sachets· Not saidNutricia drinking food· Not saidbreathing-specialised physiotherapy· Not said
Their words about each treatment
- physical therapy / rehabilitation · Helped
Even very light physical therapy which was still recommended as treatment back then made me even sicker.
In context ↗ - heartrate-based pacing · Helped
Now that i'm actively trying to stay below 120bpm to prevent reaching the 130bpm i eliminated at least 1 of my frequent PEM triggers.
In context ↗ - Garmin watch and Fatigue Sense app · Helped
I can't live without my Garmin anymore regarding pacing, and pacing saves me a lot of PEM!
In context ↗ - radical rest · Helped
if i know it is filled more than usual, i'll eat my safest and low histamine foods, and take radical rest (to lessen a PEM/POTS/MCAS flare)
In context ↗ - Nalcrom (Cromolyn) · Helped a lot
Stomach aches were gone in a few days, food intolerances got less, and over a few months time my brainfog got about 70% less.
In context ↗ - Levocetirizine · Helped
Ik neem nu een halfjaar dagelijks levocetirizine en dat lijkt ook wel te helpen.
In context ↗ - Famotidine · Helped
The Famotidine also helps me get some deeper sleep according to my Garmin watch.
In context ↗ - DAO enzyme supplement · Not said
I take a DAO enzyme supplement when i eat high in histamine or histamine liberators.
In context ↗ - Ivabradine · Helped
Ivabradine has helped me feel a bit better, lower my heartrate and my stresslevel and get a higher Body Battery because of better sleep!
In context ↗ - class-2 compression garments · Helped
wearing ribcage-high or thigh-highs compression and that helps quite a bit!
In context ↗ - electrolytes / ORS · Helped
Drinking isotone drinks or ORS helps for enough fluids and elektrolytes.
In context ↗ - Low-FODMAP diet · Helped
completely low-fodmap takes away a lot of the irritants/issues, so it might be good to give your guts some rest
In context ↗ - glutenfree and dairy free diet · Helped
cutting these out of my diet and the Nalcrom have stabilised my GI issues, gave me a bit more energy, made me gain weight again (which was needed) and way less brainfog
In context ↗ - low histamine diet · Helped
i eat dairy and wheat/glutenfree, lower in histamine where i can
In context ↗ - combined anti-inflammatory + bronchodilator inhaler · Helped
Got meds for this and that helps a bit with my energy level.
In context ↗ - paracetamol · Not said
using paracetamol way more frequently due to myalgia and joint pain
In context ↗ - stomach protector · Not said
anti histamines, stomach protector 2/d
In context ↗ - medical fiber sachets · Not said
medical fiber sachets and Nutricia drinking food
In context ↗ - Nutricia drinking food · Not said
on severe crash days i use vegan (protein) nutridrink bottles that count as liquid meals
In context ↗ - Lamotrigine · Helped
Which worked wonderfully for the VSS, but unfortunately i had to quit after 6 weeks because i got the side effect of 'acute short term memory loss'.
In context ↗ - Mindfulness (MBCT training) · Worse
Some people say Mindfulness can make it less, but in my experience it made it worse. (Did an official MBCT training).
In context ↗ - breathing-specialised physiotherapy · Not said
I've also visited a breathing-specialised PT to normalise my breathing pattern
In context ↗ - Magnesiumbisglycinate · Helped
Magnesiumbisglycinate to make my muscles relax more during the night
In context ↗ - Omega 3 · Helped
Omega 3 + VitaminD
In context ↗ - silver splints · Helped
Using silver splints and being mindful of my movements helps prevent pain.
In context ↗ - dynamic lying system (Levare Cura) · Helped
my heartrate isn't rising as much anymore and my body actually releases muscle tension during sleep now!
In context ↗ - powered wheelchair · Helped
I now use a powered wheelchair for anything longer than 15mins of walking or standing still when outside my home and that saves SO MUCH energy!
In context ↗ - UV-reactive prescription glasses · Helped
i bought UV-reactive prescription glasses which help with the light sensitivity and sensory input
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · Antihistamines & MCAS · Diet · Pacing · Supplements
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 | After |
|---|---|---|---|
| March 2022 | COVID infection, Long Covid onsetAnd then I got covid, which spiraled me to rock bottom.In context ↗ | Moderate | |
| 2023 | partial recovery, graduated and started working 28h a weekManaged to get a bit better the following year, to graduate and started working 28h a week.In context ↗ | Mild | |
| late 2024 | crashed after job burnout and recovery from major surgeryI got into a burn-out triggered by my job and a heavy recovery time after a major surgery (not organ related) which triggered this flare-up.In context ↗ | Severe | |
| September 2025 | rehab: walking 10 min without sitting, heart rate kept under 120allowed' to walk 10 minutes without sitting down, unless my heartrate gets above 120In context ↗ | Severe | Pacing and the energy envelope |
| January 2026 | Nalcrom for MCAS: stomach aches gone, brain fog much less, weight gainStomach aches were gone in a few days, food intolerances got less, and over a few months time my brainfog got about 70% less.In context ↗ | Severe | Cromolyn (Gastrocrom, Nalcrom) |
| February 2026 | able to walk 30 minutes twice a weekam able to walk 30 minutes 2 times a week nowIn context ↗ | Severe | Pacing and the energy envelope |
| October 2026 | still mainly housebound, powered wheelchair outside, stabilisingI'm still mainly housebound and an ambulatory power assisted wheelchair userIn context ↗ | Severe |
Adverse events
- “a heavy recovery time after a major surgery (not organ related) which triggered this flare-up” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“laag tempo revalidatie maakt me tot nu toe alleen maar zieker helaas” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“De oefeningen voor bedlegerige patiënten heb ik dus ook gehad, (isometrische fysio) maar triggerden dus juist PEM helaas” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“Even very light physical therapy which was still recommended as treatment back then made me even sicker” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“Some people say Mindfulness can make it less, but in my experience it made it worse. (Did an official MBCT training)” In context ↗ Made symptoms worse
- Lamotrigine (Lamictal)“i had to quit after 6 weeks because i got the side effect of 'acute short term memory loss'” In context ↗ Side effects
- “i don't want the higher heartrate that it causes since i also have POTS and IST” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseVision problems
Their words about their symptoms
- Post-exertional malaise
Right now PEM is again my main issue
In context ↗ - Brain fog
my brainfog got about 70% less
In context ↗ - POTS & dysautonomia
I also have POTS and IST
In context ↗ - Mast cell (MCAS) & allergies
turns out i have MCAS
In context ↗ - Pain & fibromyalgia
using paracetamol way more frequently due to myalgia and joint pain
In context ↗ - Gut problems
at least my brainfog and stomach pain are way less than before!
In context ↗ - Light & noise sensitivity
which help with the light sensitivity and sensory input
In context ↗ - Breathlessness
One of my cues for PEM before i got my inhaler was difficulty breathing.
In context ↗ - Heart symptoms & palpitations
my heartrate is usually already around 110 when at rest during the day
In context ↗ - Anxiety & low mood
my chronic(!) depression was gone!
In context ↗ - Vision problems
i've had mild VSS my whole life, but it got extreme when i got infected with covid
In context ↗
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