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ME/CFS Very severe → somewhat betterIll 6 years before improving or writingNeeds ongoing treatment

Very severe, bedridden ME/CFS, now somewhat better with LDN and ketotifen

Marsh 16925 on RedditLast post Oct 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
6 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSWe both developed CFS ME, PEM and POTS and got diagnosed with those in 2021. In context ↗
  • At worst: Very severeI couldn't hold my head up and was on bed pan In context ↗
  • Now: Somewhat betteri still have severe sensory issues but better to the point of able to write this with special screen and light filter In context ↗
  • Began after: COVIDgot sick at the same time in 2020 with an extra aggressive covid strain
  • Says they never had: Anxiety & low moodI never had depression, not even anxiety
Read from 158 of their posts and comments; links to the 51 this page draws on

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Summary

Marsh 16925 fell ill with COVID in 2020 and was diagnosed with ME/CFS and POTS in 2021, becoming very severe, bedridden and near IV nutrition. They credited LDN, ketotifen and other antihistamines, a low-histamine diet, mitochondrial supplements and later Mestinon with piecemeal gains. Six years on they remained severe and bedridden, better than their worst, and were hospitalised twice after trying ivabradine and cromolyn.

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What they tried

What they credit

LDN· Helped a lot · mainKaneka Ubiquinol Q10· Helped a lotNADH sublingual from Dr. Birkmayer· Helped a lotKetotifen· Helped a lotC8 MCT oil· Helped a lot · mainketogenic / no-carb diet· Helped a lotMestinon· Helped a lot · mainIvabradine· Helped a lotlow histamine diet, no gluten/lactose· HelpedFluvoxamine· HelpedSanopal forte· Helpedstopping standing/walking, pacing· HelpedMelatonin· HelpedMagnesium malate· HelpedMagnesium glycinate· Helpedalpha lipoic acid· Helped

Also tried

stellate ganglion block of both sides· Helped a lotPaxlovid· Helped a lotFexofenadine (Allegra)· HelpedDesloratadine· HelpedDiphenhydraminchloride· HelpedFamotidine· Helpedall food blended· HelpedMidodrine· Helpedpower wheelchair· Helpedelectric bed frame· Helpedsaline IV infusions· Helpedsalt water and electrolytes· Helpedbioidentical progesterone creme· Helpedbreath work, mantra and meditation· HelpedCBT· HelpedGarmin watch with the CFS ME interface / rthm.com· HelpedIV corticosteroids· No changenormal magnesium· Worseprescribed exercise· Much worseCromolyn (Cromoglycin)· Much worseEye drops· Not said
Their words about each treatment
  • prescribed exercise · Much worsewent on a doctor prescribed mini biketour, went home, normal to bed at night and never stood really up again In context ↗
  • LDN · Helped a lotI started at 1,5mg because it was 2021 and I had the worst migraines for like three weeks In context ↗
  • stellate ganglion block of both sides · Helped a lotA stellate ganglion blockage of both sides. That helped the vertigo a lot. In context ↗
  • Kaneka Ubiquinol Q10 · Helped a lotthen Kaneka Q10 as Ubiquinol and NADH sublingual from Dr Birkmayer actually made a huge difference after some weeks In context ↗
  • NADH sublingual from Dr. Birkmayer · Helped a lotNADH sublingual from Dr. Birkmayer (4 other NADH did nothing) In context ↗
  • Ketotifen · Helped a lotKetotifen intensified Ketotifen extremely the first weeks, but then it was my life saver, I was down to 2 foods and docs wanted to start parenteral nutrition. In context ↗
  • Cromolyn (Cromoglycin) · Much worseGot twice hospitalised for each a week after trying Ivabradin and again after Cromoglycin. In context ↗
  • Fexofenadine (Allegra) · HelpedI also added 60mg of Allegra to the 3, it reduced my brainfog. In context ↗
  • Desloratadine · HelpedAntihistamines, like Fexofenadine or Desloratadine, best with Ketotifen. Ever since I sleep way better. In context ↗
  • Diphenhydraminchloride · HelpedDiphenhydraminchloride, it literally gets sold for vertigo/motion sickness. In context ↗
  • Famotidine · HelpedMy "chronic gastritis" stopped with this In context ↗
  • C8 MCT oil · Helped a lotPlus, ridiculously high amounts of C8 MCT oil. I'm very severe and it feels like taking a light switch. In context ↗
  • ketogenic / no-carb diet · Helped a lotI do best when I'm in ketosis but my body is broken so even with 0 carbs I'm hardly in ketosis but I'm waaaay better without/super low carbs. In context ↗
  • low histamine diet, no gluten/lactose · Helpedno histamine/gluten/lactose plus Ketotifen In context ↗
  • all food blended · HelpedWhat saved me at the last second from a feeding tube was getting everything blended. In context ↗
  • Fluvoxamine · HelpedLDN, Ketotifen, Fluvoxamine helped the most. In context ↗
  • Sanopal forte · HelpedSanopal forte, it's expensive and needs to be ordered from Austria, but it works great for crashes. In context ↗
  • IV corticosteroids · No changeThe steroids, even though IV, didn't change anything about my energy levels In context ↗
  • Mestinon · Helped a lotThen it started to help and now I love it and take 60mg up to 4 times a day. In context ↗
  • Ivabradine · Helped a lotI started on 1,25 and I'm now on 2,5 twice a day but it got my HR from 160 so much down and it reduced my extreme fatigue by a lot. In context ↗
  • Midodrine · HelpedAlso Mestinon, midodrine and abdominal bindages are so helpful In context ↗
  • stopping standing/walking, pacing · HelpedI started to get better when I stopped trying to see stand/walk In context ↗
  • power wheelchair · HelpedThe biggest help for me was a power wheelchair In context ↗
  • electric bed frame · Helpedmy adjustable bed frame was the best thing I got for this illness In context ↗
  • Melatonin · HelpedGot prescribed 8-10mg of melatonin to help brain waste-clairing at night from my CFS ME researching specialist. It does help me. In context ↗
  • saline IV infusions · HelpedI got them once regularly 2-3 a week and it's literally the same as drinking electrolytes In context ↗
  • salt water and electrolytes · Helpedever since changing to only salt water and as capsules potassium gluconate and magnesium malate In context ↗
  • Magnesium malate · HelpedMagnesium malate helps a bit with energy In context ↗
  • Magnesium glycinate · HelpedMagnesium glycinate helps at night for better sleep In context ↗
  • normal magnesium · WorseNormal magnesium made everything worse. In context ↗
  • alpha lipoic acid · Helpedsome like alpha lipoic acid, kaneka Q10, NADH sublingual In context ↗
  • bioidentical progesterone creme · HelpedProgesterone creme from cycle day 12-28 helped me a loooot with this In context ↗
  • Paxlovid · Helped a lotthen paxlovid started to kick in and it got so much better. That medication is a miracle. In context ↗
  • breath work, mantra and meditation · HelpedI then did breath work, mantra and meditation for an hour to lower my resting HR from 90-100 to the normal 55-60 In context ↗
  • CBT · HelpedI think CBT is great, you just need to specify the goal you have for it In context ↗
  • Garmin watch with the CFS ME interface / rthm.com · HelpedThe physical stress and body battery are actually useful for me In context ↗
  • Eye drops · Not saidmy severe dry eyes I can't take eye drops for thank to anaphylaxis, my eyes swell up In context ↗

Approaches: POTS medication · SSRIs · Antihistamines & MCAS · Diet · Pacing · Supplements

Their path

Very severeSevereModerateMildNear normalRecoveredonset12 mo2 y3 y4 y5 y6 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. 2 steps have no time and sit in story order between the steps around them. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
2020COVID infection; still working, repeatedly 'sick' after doing moreWas an endurance athlete and my friend, extreme couch potato, got sick at the same time in 2020 with an extra aggressive covid strain In context ↗Mild
2020crashed after a doctor-recommended mountainbike ride; never walked more than 500m againI did a small tour, (Mikro compared to before) woke up the next day, fainted and never again was able to walk more than like 500m. In context ↗Severe
2021fainted on sitting up after part-time job; hospitalised with CFS/ME diagnosis, on bed panafter the first week I woke up and fainted whenever I tried to sit up, got hospitalised and the CFS ME diagnosis. In context ↗Very severe
—stopped trying to stand and walk; wheeled stool, then power wheelchair and electric bedI started to get better when I stopped trying to see stand/walk, it takes too much energy with pots and CFS. In context ↗SeverePacing and the energy envelope
June 2026severe vertigo largely resolved and controllable with medsA stellate ganglion blockage of both sides. That helped the vertigo a lot. In context ↗SevereStellate ganglion block
June 2026Mestinon helped breathing, chewing, digestion, dry eyes and energy, without new capabilitiesit helps a lot I feel, without having gained actual new capabilities but thats severe lol In context ↗SevereMestinon / pyridostigmine
October 2026still severe and bedbound, no upright time, needs a carerBut yeah, still severe, had been hospitalised several times because pots and MCAS got off the rails, that severe. In context ↗Severe

Adverse events

Symptoms mentioned

Brain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityLoss of smell or tasteMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
  • Post-exertional malaisemy PEM is mainly viral and neurological not really fatigue In context ↗
  • Brain fogI couldn't read at all or follow any conversations. In context ↗
  • POTS & dysautonomiaI have CFS ME, POTS with severe dysautonomia, MCAS. In context ↗
  • Mast cell (MCAS) & allergiesI have also very sever MCAS In context ↗
  • Sleep problemsMy sleep with LDN looks so goddamn bad on my watch. In context ↗
  • Pain & fibromyalgiaI have severe pain, muscle weakness, constant fainting and so on. In context ↗
  • Headaches & migraineany other kind of screen gives me pain, nausea and migraines In context ↗
  • Gut problemsmy digestion was also not working I was down to severe underweight die to the gastroparesis In context ↗
  • Light & noise sensitivityI'm severely light sensitive, so my light alarm stays at 1% brightness and a normal alarm. In context ↗
  • Breathlessnessit improved my blurry vision, air hunger, chew abilities, muscle strength, digestion In context ↗
  • Heart symptoms & palpitationsI have 150 when I try to stand. In context ↗
  • Muscle weaknessI can't stand as my muscles are not able to carry my weight In context ↗
  • Neuropathy & tinglingI also have MG, CFS ME, MCAS, SFN In context ↗
  • Flu-like symptomscollapsed the next day with fever, vertigo, swollen lymph knodes In context ↗
  • Temperature regulationI faint above 27. Feel worse above 23. In context ↗
  • Vision problemsI get deep red hot skin blotches, can't see, think.. In context ↗
  • Loss of smell or tasteIt actually improved my ability to smell and taste a bit, after years. In context ↗

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