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ME/CFS Very severe → somewhat betterNeeds ongoing treatment

Very severe ME/CFS twice, bedbound four months, now somewhat better after LDN

Oak 48906 on RedditLast post Oct 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
Not stated
Last post
Oct 2026
In their words
  • Condition: ME/CFSMy mecfs is def post viral In context ↗
  • At worst: Very severeI am not moderate but on the "lower" end of severe after being very severe twice. In context ↗
  • Now: Somewhat betterI’m still bedbound for most of the day but my cognitive has also improved In context ↗
  • Began after: another virusMy mecfs is def post viral and I have low igA, ebv reactivation, etc. In context ↗
Read from 68 of their posts and comments; links to the 43 this page draws on

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Summary

Oak 48906 has ME/CFS, definitely post-viral with EBV reactivation, and was very severe twice; chronic norovirus once took them from mild to severe, and they were bedbound for four months one winter. Slow LDN titration, ketotifen, H1/H2 blockers, antivirals, tirzepatide and repeated vaccinations each brought small gains, leaving them at the lower end of severe and bedbound most of the day.

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What they tried

What they credit

LDN· Helped · mainketotifen and cromolyn sodium· Helped · main · wore offketotifen and cromolyn sodium· Helped · main · wore offnitazoxanide· Helpedpacing· HelpedCovid vaccine· Helpedflu, pneumonia and TDAP vaccines· Helpedmagnesium glycinate and threonate· Helpedrizatriptan· Helpedmeditation· Helpedmethylene blue· Helpedrapamycin· Helpedcreatine· Helpedacebutolol· Helped

Also tried

self compassion· HelpedCefaly device· HelpedNerivio device· HelpedH1 blocker· HelpedH2 blocker· Helpedicing and gentle massage for TMJ· HelpedSAMe· HelpedGammaCore· Helpedthymosin alpha-1· Helpedtirzepatide· HelpedXanax· HelpedMidodrine· HelpedDramamine· Helpedvaltrex· Helpedturmeric· HelpedKachava meal replacement· Helpedglycine· Helpedfludrocortisone· Helpedcompression stockings, salt and electrolytes· Helpedcompression stockings, salt and electrolytes· Helpedgluten free, dairy free, low carb diet· Helpedgluten free, dairy free, low carb diet· Helpedgluten free, dairy free, low carb diet· Helpedtenofovir· WorseCBT and CPT· Not saidRelivion device· Not saidShotsy app· Not saidmemantine· Not saidanti-fungals· Not saidoxaloacetate· Not saidZoe program· Not said
Their words about each treatment
  • LDN · HelpedIt helped reduce my pain and headaches/migraines (but if I went up too quickly it could cause worse migraines). In context ↗
  • CBT and CPT · Not saidAfter CBT, CPT, etc. I found self compassion worked best for me. In context ↗
  • self compassion · HelpedI found self compassion worked best for me. In context ↗
  • Cefaly device · Helpedbrings the pain down a notch/distracts from it for about an hour. Honestly it's the most helpful of the 3. In context ↗
  • Nerivio device · Helpedthis arm band called the Nerivio (rx needed) that's for migraines but I found as a side effect it seems to help me switch into a parasympathetic state In context ↗
  • Relivion device · Not saidI've also tried the nerivio and relivion devices. Of all 4, I find the cefaly to be the one I use most consistently. In context ↗
  • H1 blocker · HelpedI trialed 2 weeks of H1 and H2 blockers and it helped my headaches a bit. In context ↗
  • H2 blocker · HelpedA good H1+H2 blocker combo works too. Both helped with my pain. In context ↗
  • ketotifen and cromolyn sodium · HelpedHeadaches improved. Abdominal pain improved. Air hunger improved. In context ↗
  • icing and gentle massage for TMJ · HelpedI also found gently massaging it helps a lot too. In context ↗
  • nitazoxanide · Helpedbrought me down from mild to severe before nitazoxanide helped me clear it In context ↗
  • SAMe · HelpedTaking the supplement SAMe helped me the most. In context ↗
  • pacing · HelpedPacing + LDN is the slowest but got me from only tolerating 3 min of videos/shows with 2 minute breaks (max of 30-45min) to 10 minutes with 2 minute breaks (max of 1-1.5h). In context ↗
  • Covid vaccine · HelpedMy covid vaccine last year helped me out of very severe. In context ↗
  • flu, pneumonia and TDAP vaccines · HelpedHappened again recently when I got my flu vaccine. I had regressed a bit before the shot due to life being stressful (alas), after recovering from the vaccine it’s undone some of the regression. In context ↗
  • GammaCore · HelpedI used it for about 3 months. Nothing super obvious, I think it mildly helped calm my vagus nerve. In context ↗
  • thymosin alpha-1 · HelpedThese days I'm not seeing any side effects and I'm seeing about 5% improvement overall? In context ↗
  • tirzepatide · HelpedIt’s the only thing that has helped with my brain fog. In context ↗
  • Xanax · HelpedI use it very sparingly even though it helps me feel better and prevent bad PEM. In context ↗
  • Midodrine · HelpedMidodrine: 7.5mg-10mg reduce some headaches, nausea, and feelings of being totally drained when sitting up. In context ↗
  • magnesium glycinate and threonate · Helpedtaking magnesium glycinate+threonate In context ↗
  • rizatriptan · Helpedin addition to triptans etc. for pain and memantine as a prophylactic In context ↗
  • meditation · Helpedneuromodulation (Cefaly)+meditation+rizatriptan as needed to calm my migraines and nervous system helped me the most In context ↗
  • Shotsy app · Not saidI used the Shotsy app and tracked my symptoms against the predicted amount in my system for the first month while I adjusted dosing to figure this out. In context ↗
  • Dramamine · HelpedDramamine for motion sickness (a new mecfs symptom) and helps me sleep in the car In context ↗
  • valtrex · HelpedReduction of headaches and GI pain on Valtrex, slight improvement in fatigue. In context ↗
  • tenofovir · Worsethe tenofovir made me feel horrendous and once I was off of it the EBV came back. Was a decent 2 weeks while negative. In context ↗
  • memantine · Not saidmemantine as a prophylactic In context ↗
  • turmeric · HelpedLow inflammation diet, supplements (magnesium, turmeric, SAMe), neuromodulation devices to calm nervous system, good sleep hygiene, etc. It helped a bit. In context ↗
  • anti-fungals · Not saidanti-virals+anti-fungals on top of the LDN In context ↗
  • Kachava meal replacement · HelpedWhen my gut was totally destroyed and couldn't handle any meal replacement shake, I was able to tolerate Kachava really well. In context ↗
  • oxaloacetate · Not saidI do 500mg with each meal bc I actually don't notice a significant difference between 500mg vs 1000mg. In context ↗
  • methylene blue · HelpedWeirdly, taking methylene blue my have helped my air hunger (after POTS meds). In context ↗
  • glycine · HelpedGeneral things: glycine, some mast cell stabilizer or H1/H2 blocker, an apple before bed In context ↗
  • fludrocortisone · HelpedIt does help me feel less physically ill when I sit up for a while and improves my BP. In context ↗
  • Zoe program · Not saidFor a while I followed Zoe (zoe.com), it's a for-profit company that does research into the microbiome In context ↗
  • rapamycin · HelpedNot sure which it was exactly but rapamycin, creatine, methylene blue, and acebutolol. Combined with not overexerting. In context ↗
  • compression stockings, salt and electrolytes · HelpedI find thigh high compression stockings consistently the easiest. In context ↗
  • gluten free, dairy free, low carb diet · HelpedI've "cured" some of my MCAS reactions to garlic and onions through diet In context ↗

Approaches: Antihistamines & MCAS · Beta-blockers · Mind-body practices · Other drugs and medicines · Pacing · Supplements · Vaccination

Their path

Very severeSevereModerateMildNear normalRecovered

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
—ME/CFS onset, probably post-viralMy mecfs is def post viral and I have low igA, ebv reactivation, etc. In context ↗Not stated
before 2025chronic norovirus for over half a year took them from mild to severeFor me it never did and brought me down from mild to severe before nitazoxanide helped me clear it. In context ↗Severe
winter 2024-25four months bed bound; very severeAfter 4 months being bed bound last winter I started to like overcast days? In context ↗Very severe
2025came out of very severe after a COVID vaccine, with fewer hours in bedI went from bed bound 10h during the day down to 7-8h. HR spikes came down a little. Able to consistently leave bedroom for all meals. In context ↗SevereCOVID vaccination as treatment
2025-09two-week regression from stressI’ve been struggling with the same worries recently due to a regression the past two weeks. In context ↗Severe
2025-10about 5% overall improvement on thymosin alpha-1I'm seeing about 5% improvement overall? In context ↗SevereThymosin alpha-1 (Ta1)
2025-11tirzepatide cleared the morning brain fogI recently started tirzepatide a few days ago and ever since the fogginess has gone away. In context ↗SevereTirzepatide (Mounjaro, Zepbound)
2025-11-22worse body aches and migraine; ketotifen becoming less effectiveMy body aches so much and I have a migraine. Ketotifen is starting to be less effective for me. In context ↗Severe
2026-05back to the lower end of severe after being very severe twiceI am not moderate but on the "lower" end of severe after being very severe twice. In context ↗SevereLow-dose naltrexone
2026-06almost moderate-severe on tenofovir, but EBV returned after stoppingAlmost feeling mod-severe after a stint of Tenofovir which helped me get a negative EBV PCR In context ↗SevereTenofovir (Viread, Vemlidy)
2026-06-21cognitive function improved though still bedbound most of the dayI'm still bedbound for most of the day but my cognitive has also improved In context ↗Severe
2026-09further gains from rapamycin, creatine, methylene blue and acebutolol plus not overexertingNot sure which it was exactly but rapamycin, creatine, methylene blue, and acebutolol. Combined with not overexerting. In context ↗SevereMethylene blue
2026-10still severe; lowered fludrocortisone to 50mcg after blood pressure rose and manages it with midodrineSo I decreased to 50mcg to try to decrease my bp and instead manage that part with midodrine. In context ↗Severe

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
  • Post-exertional malaiseit helps me feel better and prevent bad PEM In context ↗
  • Brain fogIt’s the only thing that has helped with my brain fog. In context ↗
  • POTS & dysautonomiaI have POTS and better blood profusion to my brain improves my sleepiness and brain fog. In context ↗
  • Mast cell (MCAS) & allergiesMade me realize I had MCAS. In context ↗
  • Sleep problemscan sleep through the night finally but effect disappears under 1.4mg In context ↗
  • Pain & fibromyalgiaMy body aches so much and I have a migraine. In context ↗
  • Headaches & migrainemy headaches and migraines improved from daily to once every 3ish days In context ↗
  • Gut problemsMy recurring terrible stomach pain is mostly gone. In context ↗
  • BreathlessnessAir hunger improved. In context ↗
  • Heart symptoms & palpitationsI would wake up in the middle of the night with heart palpitations In context ↗
  • Muscle weaknessno difference in stamina/weakness (for me) In context ↗
  • Neuropathy & tinglingfuzzy or tingly feeling In context ↗
  • Anxiety & low moodthat I know can give me an anxiety attack In context ↗
  • Flu-like symptomsheadache/migraine/tinnitus/sore throat/aching legs/aching body In context ↗
  • Tinnitusheadache/migraine/tinnitus/sore throat In context ↗

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