Miruvor
Sign up
Long COVID Severe → somewhat betterIll 4.5 years before improving or writingNeeds ongoing treatment

Unable to work with long COVID, now somewhat better with pacing and inhalers

Stream 82409 on RedditLast post Oct 2026

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 COVIDI'm a long hauler since april 2020 In context ↗
  • At worst: SevereAbout 25% of my old self again, very disabled still. In context ↗
  • Now: Somewhat betterAfter 4,5 years, it's also going in the right direction with me. ... my PEM and POTS have certainly improved! In context ↗
  • Began after: COVIDInfected april 2020.
  • Says they never had: Gut problemsI have no stomach related issues
Read from 166 of their posts and comments; links to the 64 this page draws on

Request to remove this story

Summary

A woman in the Netherlands fell ill with COVID-19 in April 2020 and was left with brain fog, extreme fatigue, tinnitus, visual snow, neuropathic itch and severe asthma, unable to work. Rehabilitation ultimately failed, though pacing helped; antihistamines and infrared light gave only small, short-lived gains. Vaccines and at least three reinfections made her worse. Her asthma was nearly controlled after 1.5 years of inhalers, and by four years she could walk up to 8,000–10,000 steps a day, though other exercise and chores remained difficult and she remained disabled.

Ask Miruvor AI

Asking aboutStream 82409’s story

What they tried

What they credit

building up daily steps with a mini treadmill· Helped a lotpacing· Helped a lot · mainspecialized rehabilitation programme· Helped · wore offfluvoxamine· Helpedzopiclone (zopyclon) / zolpidem· Helped · mainzopiclone (zopyclon) / zolpidem· Helped · mainCymbalta (duloxetine)· Helpedquercetine· HelpedAcceptance and Commitment Therapy (from a book)· Helpedcreatine· HelpedNalcrom· Helpedlymphatic exercise and lymphatic drainage massage· Helped

Also tried

inhalers (Beclometason and Formoterol, 'Foster')· Helpedosteopath· Helpedmicrodosing mushrooms (psilocybin)· HelpedTara Brach talks (radical acceptance)· Helpedantihistamines (incl. hydroxyzine)· Helped · wore offbaby aspirin· Helped · wore offlow histamine diet / histamine diet· HelpedMontelukast· Helpedprobiotics (Orthiflor/Orthica)· Helpedfish oil with high DHA· Helpedvitamin D· HelpedDAO supplements (Natur Dao)· Helpedhigh dose magnesium· HelpedLungwort· Helpednystatin· Helpedpainkillers· Helpedinfrared light (2200W)· HelpedTai Chi, stretches and yoga· Helpedmatcha (green tea)· Helpedmucuna tablets and high dose theanine· Helpedhypoallergenic toothpaste, waterpick and oil pulling· Helpedflu shot· No changegluten free diet· No changeCBD· Worseweed (cannabis)· Worselow carb diet· Worseintermittent fasting· Worsenattokinase· Worse24-hour fasts (broth and tea)· WorseADHD stimulants· Worseresveratrol (Lucovitaal)· WorsePfizer shots and Moderna booster· Much worselow sugar diet· Not saidmelatonine· Not saidpotassium supplement from nettles· Not said
Their words about each treatment
  • specialized rehabilitation programme · HelpedI've rehabilitated in an intense programme that specializes in chronic conditions, but I must say that the help in general was 'meh'. In context ↗
  • inhalers (Beclometason and Formoterol, 'Foster') · Helpedthe only real progress that I've made is with this inhaler that combines Beclometason and Formoterol In context ↗
  • Pfizer shots and Moderna booster · Much worsePfizer shots made me temporarily worse, Moderna booster hospitalized me for a day. In context ↗
  • osteopath · HelpedI git the tip there to go to an osteopaat. It has helped me with some very specific symptoms, like nerve pains, ear and jaw problems and breathing issues. In context ↗
  • microdosing mushrooms (psilocybin) · HelpedI actually did this and it did wonders for my mood, but it worsened my neuropathic symptoms. In context ↗
  • CBD · WorseWell, I tried it and it had a really weird and intense effect on my face muscles (felt strained and swollen). In context ↗
  • weed (cannabis) · WorseI also got some odd muscle tensions and spasmes in my face and chest with cbd and weed. In context ↗
  • Tara Brach talks (radical acceptance) · Helpedthe best thing I have done for me is listening to the talks of Tara Brach on youtube In context ↗
  • low carb diet · WorseI have tried low carb, but it kind of started messing with my brainfog in a negative way. In context ↗
  • intermittent fasting · WorseI had the Same with intermittent fasting. Amazing results for about a week, then my energy dropped again. In context ↗
  • flu shot · No changeIt did nothing! So glad. In context ↗
  • gluten free diet · No changeUnfortunately it didn't reduce my symptoms, but I've only tried it strictly for about three weeks In context ↗
  • antihistamines (incl. hydroxyzine) · HelpedI have taken a few kinds of antihistamines, including hydroxyzine and it helps me with energy and neuropathy, but weirdly the effects wear off after a few weeks. In context ↗
  • baby aspirin · Helpedfor two weeks this helped with my neuropathy/itch, but the effect wore off In context ↗
  • low histamine diet / histamine diet · HelpedThe ONLY thing that seems to reduce my neuropathy is the low histamine diet. In context ↗
  • low sugar diet · Not saidI tried cbd, weed, fasting, histamine diet, low sugar diet, and a lot of supplements. In context ↗
  • Montelukast · HelpedMontelukast helps a little. In context ↗
  • probiotics (Orthiflor/Orthica) · HelpedI tried a few different probiotics, but I think I had minor positive result with orthiflor/orthica In context ↗
  • fish oil with high DHA · Helpedfish oil pills with a high % of DHA. It help a little with neuro symptoms, but it's not performing any miracles. In context ↗
  • vitamin D · Helpedthe only supplements that might actually do something (small) for me are vit D and omega-3 tablets with high DHA levels. In context ↗
  • nattokinase · WorseNattokinase (promotes bloodflow, but gave me histamine reactions) In context ↗
  • 24-hour fasts (broth and tea) · WorseI did a 23-24 hour fast twice with contrasting results and have done intermittent fasting. In context ↗
  • fluvoxamine · HelpedThis was a game changer for me on cognitive symptoms, bloodflow, and vision. In context ↗
  • DAO supplements (Natur Dao) · Helpedhigh dose of DAO supplements before meals and antihistamines before sleep. In context ↗
  • zopiclone (zopyclon) / zolpidem · HelpedZopyclone (not exactly 100% a benzo, but kinda) has been literally life saving. In context ↗
  • Cymbalta (duloxetine) · HelpedCimbalta was the only thing that helped me. In context ↗
  • ADHD stimulants · WorseALL stimulants give me terrible side effects now. In context ↗
  • melatonine · Not saidI'm trying the Huberman sleeptrack and melatonine right now, but it's definitely not powerful enough to keep me sleeping during heart problems In context ↗
  • high dose magnesium · Helpedhigh dose of magnesium. I use different kinds that surmount to 500-600% of the daily recommended intake. In context ↗
  • Lungwort · Helpedimproved from **Lungwort**, but it worsened my itch/pain In context ↗
  • nystatin · HelpedFor the tongue problems helped nystatin. In context ↗
  • painkillers · HelpedPainkillers help temporarily. In context ↗
  • infrared light (2200W) · HelpedI have a 2200w infrared light at home and I'm under it everyday and have been for the past year. In context ↗
  • Tai Chi, stretches and yoga · HelpedAlso tried Tai Chi and stretches/yoga with works slightly better but also drained me. In context ↗
  • building up daily steps with a mini treadmill · Helped a lotI did notice that after a while I was able to build up my daily steps. I decided to embrace it and bought a mini treadmill. In context ↗
  • matcha (green tea) · Helpeda cup of strong matcha helps for the brainfog and maybe even for mood In context ↗
  • quercetine · HelpedI used both of those things! The matcha and the quercetine. I think it definitely helps at least a little. In context ↗
  • resveratrol (Lucovitaal) · Worsewithin two days some symptoms that I had way in the beginning (active infection) returned In context ↗
  • Acceptance and Commitment Therapy (from a book) · Helpedsome principles of ACT helped deal with the disease. In context ↗
  • creatine · HelpedI can attest that creatine could definitely help a bit. In context ↗
  • potassium supplement from nettles · Not saidI just got some supplements to try that's potassium derived from nettles. In context ↗
  • mucuna tablets and high dose theanine · HelpedThere are more natural, watered-down versions available online that also actually help, like mucuna+high dose theine. In context ↗
  • Nalcrom · HelpedI've just started with Nalcrom, and after a weird start, I think it's getting less severe. In context ↗
  • lymphatic exercise and lymphatic drainage massage · Helpeddoing lymphatic exercise and doing lymphatic drainage massage really helps In context ↗
  • hypoallergenic toothpaste, waterpick and oil pulling · HelpedOne thing I figured out is that hypoallergenic toothpaste helped me a little. In context ↗
  • pacing · Helped a lotAfter pacing intensely my PEM, POTS, and breathing issues have become milder. In context ↗

Approaches: CBT & mindset · SNRIs · SSRIs · Alternative therapies · Antihistamines & MCAS · Other drugs and medicines · Pacing · Physiotherapy and rehab · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 y

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
April 2020COVID-19 infection with a very bad acute phaseI've had a bad acute phase in April 2020 and in hindsight, I should've been hospitalized (low oxygen levels in blood). In context ↗Severe
July 2021some symptoms starting to get better after an intense rehabilitation programmeAfter about 16 months and with a looooot of rehabilitation, I can finallt say some symptoms are getting better (and some not btw). In context ↗ModerateGraded rehab and self-made programmes
2022omicron and the Moderna booster ended her ability to work out at allafter omicron/booster, I can't work out at all anymore (I could do that at a very slow pace before) In context ↗Severe
September 2022lowest baseline: unfit to work, struggling with domestic tasksI'm completely unfit to work and have a lot of trouble performing domestic tasks. In context ↗Severe
March 2024built daily steps up from not being able to walk uprightI went from not able to walk up right to 10.000 steps over the span of four years. In context ↗ModerateGraded rehab and self-made programmes
October 2024PEM, POTS and fatigue improved while histamine and neuropathic symptoms stayed severeMy histamine issues and possible neuropathic issues are still murder, but my PEM and POTS have certainly improved! In context ↗ModeratePacing and the energy envelope
January 2025crashed after holiday social overexertion; spasms and twitches 100x worseI might have overdone it with the holidays (social stuff while trying to maintain my 'fitness'). In context ↗Moderate
April 2025Nalcrom, lymphatic drainage and prescribed antihistamines helping somewhatNot completely resolved, but there are a few things that I think that really help me. In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
  • Post-exertional malaiseI also have PEM then. In context ↗
  • Brain fogmy main symptoms are: brainfog In context ↗
  • POTS & dysautonomiamy PEM and POTS have certainly improved! In context ↗
  • Mast cell (MCAS) & allergiesI have developed Mcas In context ↗
  • Sleep problemsThe itching keeps me out of my sleep literally the whole night. In context ↗
  • Pain & fibromyalgiaLimbs: pins and needles, dull and sharp pains In context ↗
  • Light & noise sensitivityI can't go out into the streets easily anymore, I hate the sound of traffic and children playing outside now. It's literally painful. In context ↗
  • Breathlessnessmy PEM, POTS, and breathing issues have become milder In context ↗
  • Heart symptoms & palpitationsmy main symptoms are: brainfog, extreme fatigue, loud tinnitus, snow vision/eye vision problems, forgetfulness, heart problems In context ↗
  • Neuropathy & tinglingneuropathic symptoms, a jaw tremor In context ↗
  • Anxiety & low moodYesterday, I had suicidal thoughts. In context ↗
  • Flu-like symptomsthe chills are back, throat problems that had taken more than three years to recede are back In context ↗
  • Temperature regulationmade my tremors and my body temperature problems worse In context ↗
  • Vision problemssnow vision/eye vision problems In context ↗

Ask Miruvor AI

Asking aboutStream 82409’s story

Similar stories

  • Bedridden then housebound with long COVID, now much better with pacing and LDN

    Much better Acorn 29837 Long COVID Very severe at worst reddit.com Jun 2025

    They had ME/CFS from EBV since age 19 and were mild until COVID in February 2020 left them bedridden then housebound for years; exercise advice in 2021 disabled them further. Pacing, rest, low-histamine diet, supplements, LDN, semaglutide and peptides lifted…

  • Largely bedbound for a year with long COVID, now near normal after keto and antihistamines

    Near normal Cardinal 77532 Long COVID Severe at worstIll 4.5 years before improving or writing reddit.com Sep 2024

    Cardinal 77532, a man in his early seventies when COVID-19 hit in late 2019, was largely bedbound for a year. He credited a strict keto, low-histamine diet, antihistamines and supplements with lifting most symptoms to about 95% at times. Shingles and…

  • Long COVID 80% recovered with LDN, then a workout crash left them housebound

    Relapsed Zephyr 10189 Long COVID Severe at worstIll 19 months before improving or writing reddit.com Oct 2026

    Zephyr 10189 fell ill with long COVID in early 2022. By 19 months they were about 80% recovered, crediting LDN, antihistamines and gut treatments. A 20-minute leg workout, reported in June 2024, caused a crash with heavy, cramping limbs; by August 2024 they…

  • Long COVID crashes and wrecked gut, now near normal on antihistamines and diet

    Near normal Badger 97535 Long COVID Mild at worstIll 5.5 years before improving or writing reddit.com Oct 2026

    Badger 97535 developed long COVID after a covid infection in early 2021. He worked through months of 2-4 hours' sleep early on, a wrecked gut, mast cell reactions and flu-like crashes after exercise. Antihistamines, keto and very-low-calorie diets, PEA,…

A little hope, every Sunday

New recovery stories and data-driven research on ME/CFS and long COVID. Ideas worth considering, and the evidence behind them.

Free · Unsubscribe anytime