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Long COVID Very severe → near normalIll 2 years before improving or writingNeeds ongoing treatment

Bedbound with long COVID, now nearly back to normal on anticoagulants and LDN

Pebble 30893 on RedditLast post Mar 2026

Condition
Long COVID
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
2 years
Last post
Mar 2026
In their words
  • Condition: Long COVIDI'm going on 4 years with long covid, now back to pre-covid levels In context ↗
  • At worst: Very severeI was completely bedbound and only awake for 2 hours a day at this point. In context ↗
  • Now: Near normalI went from Severe to in remission, mainly due to LDN. ... the underlying ME/CFS isn't cured just all the symptoms are masked In context ↗
  • Began after: COVIDIn May of 2020, despite an excess of caution, I got Covid while grocery shopping.
Read from 80 of their posts and comments; links to the 28 this page draws on

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Summary

They caught COVID in May 2020 and after months of recurring Covid-like episodes became completely bedbound, awake only two hours a day and too breathless to talk. Triple anticoagulant therapy took them to about 65-70% recovered; low-dose naltrexone at 3 mg daily then got them back to full-time work and exercise. Missing three LDN doses caused a two-month relapse, but they returned to remission on all their treatments.

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What they tried

What they credit

triple therapy / blood thinners· Helped a lot · mainLDN· Helped a lot · main · wore offvery gentle exercise· Helped

Also tried

Topamax· Helped a lothigh dose antihistamines (Rupanase)· HelpedQuercetin· HelpedBovine Collustrum· Helpedelectrolyte drinks· Helpedpropranolol· Helpedbenzos· Helpedvyvanse· Helpedcaffeine· HelpedEpilim· HelpedPrednisone· Worsezinc· WorseRitalin· Worsetriptans· Worseintermittent fasting and some 36 hour fasts· Not saidEsomeprozole· Not saidrest and pacing· Not saidNSAIDs (unspecified)· Not said
Their words about each treatment
  • triple therapy / blood thinners · Helped a lotI started triple therapy when I was 2+ years in. I went from completely bedbound to about 65-70% recovered. In context ↗
  • Prednisone · WorseInitially I was also given Prednisone to help with the inflammation that comes with breaking down microclots. But stopped taking it because it worsened my condition and didn't really help me. In context ↗
  • LDN · Helped a lotI spoke to my other doctor about LDN and gave that a 6 month trial. That slowly got me back to a 10/10. In context ↗
  • high dose antihistamines (Rupanase) · HelpedFortunately, I am on an ungodly dose of antihistamines already. It was a major breakthrough for a lot of my allergic type symptoms In context ↗
  • Quercetin · HelpedBeen on Quercetin since December last year and it helps me but still very ill. In context ↗
  • Bovine Collustrum · HelpedI find the Quercetin helps more with fatigue and the Bovine Collustrum with digestive symptoms In context ↗
  • zinc · WorseI took zinc early on and it caused more issues. In context ↗
  • electrolyte drinks · HelpedElectrolytes, electrolytes, electrolytes! They make me feel less tired. In context ↗
  • intermittent fasting and some 36 hour fasts · Not saidI also do intermittent fasting and some 36 hour fasts. In context ↗
  • propranolol · HelpedFortunately, propranolol sorted out this issue. In context ↗
  • very gentle exercise · HelpedMost of the improvement now is coming from very gentle exercise combined with the meds In context ↗
  • benzos · Helpedhe gave me some benzos to try for 2 weeks ... But now in the second week, I feel... almost normal. In context ↗
  • vyvanse · HelpedI still feel extremely sleepy if I don't take vyvanse and caffeine In context ↗
  • Ritalin · WorseYou can take the same med everyday for months and suddenly it affects your circulation (looking at you, Ritalin) In context ↗
  • Esomeprozole · Not saidI was already on a strong PPI for heartburn, so I continued with that (40mg Esomeprozole) In context ↗
  • Epilim · HelpedI was prescribed Epilim by my Neurologist. It really improved my symptoms, but the side effects were difficult to manage In context ↗
  • Topamax · Helped a lotI did Topamax 100mg as well and that sorted things out. I only get about 1 episode a year now, but I need to stay on the Topamax otherwise it goes to 1 episode a month In context ↗
  • triptans · WorseThe triptans would give me a headache (ironic) and not stop the migraine. In context ↗
  • rest and pacing · Not saidJust wanted to second all of the people who are saying to rest and pace yourself. In context ↗
  • NSAIDs (unspecified) · Not saidthe only trouble I have with NSAIDs is related to my GORD/heartburn In context ↗

Approaches: Anticoagulants · Exercise and activity

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
2020long COVID began as recurring Covid-like episodes after a mild infectionA few months later, I got the exact same Covid symptoms: extreme fatigue, sore muscles, brain fog, loss of smell, shortness of breath. In context ↗Moderate
2022progressively worse until completely bedbound and awake two hours a dayI was completely bedbound and only awake for 2 hours a day at this point. In context ↗Very severe
March 2023went from bedbound to about 65-70% recovered, later plateauingI went from completely bedbound to about 65-70% recovered. In context ↗MildTriple anticoagulant therapy
October 2024back to pre-Covid levels, working full time and exercising twice a weekI'm not only back to pre-Covid levels, I'm better than before. I work a full-time job and exercise at least twice a week. In context ↗Near normalLow-dose naltrexone
April 2025relapse after missing three LDN doses, back in a wheelchair and off workI missed 3 doses while waiting for more to be compounded. It's been two weeks and I am still feeling awful. In context ↗Moderate
November 2025back in remission after about two monthsIt was two months. Fortunately I'm back in remission now. In context ↗Near normalLow-dose naltrexone
2026in remission, generally fine while taking all treatments and supplementsAs long as I take all the things (yes, supplements too), I'm generally fine In context ↗Near normal

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
  • Post-exertional malaiseEven gentle exercise would cause PEM and put me out of action for days. In context ↗
  • Brain fogBrain fog also much better, I can remember much more and think more clearly. In context ↗
  • BreathlessnessThe shortness of breath completely resolved on the blood thinners before I started LDN. In context ↗
  • Heart symptoms & palpitationsI would get weird palps at night when sleeping (they would wake me up several times each night). Haven't had them since starting propanolol In context ↗
  • Sleep problemsI need more stimulation - I have to take so much caffeine and I still fall asleep throughout the day. In context ↗
  • Headaches & migraineI only get about 1 episode a year now, but I need to stay on the Topamax In context ↗
  • Mast cell (MCAS) & allergiesI have been diagnosed with MCAS In context ↗
  • Temperature regulationI became intolerant of any temperature above 12°C, which we only see in the middle of winter. In context ↗
  • Muscle weaknessIf I was sitting on the floor, I couldn't get up without somebody basically lifting me to standing. In context ↗
  • Gut problemsI get really bad heartburn, from before Covid In context ↗
  • Anxiety & low moodI have Bipolar and am normally depressed, with anhedonia as part of that. In context ↗
  • Loss of smell or tasteSome symptoms have resolved completely, such as feeling out of breath with normal O2 when just talking, chest pain, and loss of smell. In context ↗
  • Pain & fibromyalgiaI got the exact same Covid symptoms: extreme fatigue, sore muscles, brain fog, loss of smell, shortness of breath. In context ↗
  • Light & noise sensitivityDuring migraines, I can't read, walk, use screens, or even listen to anything because everything was too loud, even people whispering to me. In context ↗
  • Vision problemsIf it is really severe then my eyes move back and forth involuntarily, making reading next to impossible. In context ↗

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