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ME/CFS Very severe → much betterIll 6.5 years before improving or writingNeeds ongoing treatment

Severe ME/CFS, mostly housebound for over two years, now much better with rest and pacing

Vale 28138 on RedditLast post Oct 2026

Condition
ME/CFS
At worst
Very severe (bedbound, unable to do basic care)
Ill before improving or writing
6.5 years
Last post
Oct 2026
In their words
  • Condition: ME/CFSMy post viral condition is Myalgic encephalomyelitis In context ↗
  • At worst: Very severeThe first year with bedpans and requiring people to bring me food and water was by far the hardest. In context ↗
  • Now: Much betterMyalgic Encephalomyelitis patient here, was severe, now moderate but still mostly homebound. In context ↗
  • Began after: COVIDI was exposed March 8 of last year and fell ill March 11.
Read from 172 of their posts and comments; links to the 75 this page draws on

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Summary

A Hawaii worker fell ill with COVID in March 2020 and developed severe ME/CFS, mostly housebound and unable to work for over two years. Dozens of supplements, LDN, cannabis and other remedies brought little; rest, pacing and salt for POTS helped. They improved somewhat from very severe but remained mostly housebound with severe ME/CFS, spending thousands on supplements.

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What they tried

What they credit

food-based probiotics (goat kefir, kombucha, miso, sauerkraut, kimchi, 40 billion microbe supplement)· Helpedintermittent fasting (15-18 hours)· Helpedpacing· Helped · mainaggressive rest· Helped · mainblack seed oil (Nigella sativa)· Helpednicotine (vaping and patches)· Helpedurolithin-A· Helped

Also tried

NAD+· HelpedSAM-E· Helpedallergy meds, hydroxyzine, cetirizine and other OTC antihistamines· Helpedallergy meds, hydroxyzine, cetirizine and other OTC antihistamines· Helpedorganic green coffee enemas· Helpedsalt and electrolytes· Helpedcannabis (CBD/THC, full-spectrum cannabinoids)· Helpedbee sting· Helpedalcohol (about one drink a night)· Helpedintravenous saline· Helped · wore offprayer· Helpedpowdered cumin· Helpedhuperzine-A· Helpedactivated charcoal· Helpedbeef and simple carbs (comfort foods)· Helpedmeditation and calming breath work· No changelow histamine diet· No changemelatonin (Sleep3)· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changevalerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi· No changebenzodiazepines· No changeresveratrol· No changefungal medications· No changegabapentin· No changestatin drugs· No changePfizer mRNA vaccine (two doses and a Moderna booster)· Worseraw garlic cloves· WorseLDN· WorseAmbien (zolpidem)· Worsemethylene blue· Worsepsilocybin and ayahuasca· Worsecollagen powder· Worsequercetin powder· WorseGLP-1· Worsetherapy· WorseAntidepressants (unspecified)· Worsetreadmill stress test· Much worseantibiotics· Much worsekrill oil and salmon oil / fish oil· Not saidanti-inflammatory diet· Not saidB vitamins· Not saidlions mane, reishi, Cordyceps and Chaga mushrooms· Not saidFitbit· Not saidbenfotiamine· Not saidivermectin· Not saidGABA· Not saidmagnesium (CALM)· Not saidturmeric root and ginger· Not saidturmeric root and ginger· Not saidfat-soluble vitamins A, D, E & K· Not saidEnsure meal replacement· Not saidmetformin· Not saidCPAP and sleep apnoea treatment· Not said
Their words about each treatment
  • food-based probiotics (goat kefir, kombucha, miso, sauerkraut, kimchi, 40 billion microbe supplement) · HelpedI think intermittent fasting (16-18 hours between dinner and breakfast) and a lot of probiotics did help rebuild my gut. In context ↗
  • NAD+ · HelpedOne supplement that helped my energy is NAD+, but it’s not without side effects (mild liver discomfort and feeling of flushing in the face similar to niacin.) In context ↗
  • SAM-E · HelpedSAM-E provides mild help with mood and energy. In context ↗
  • pacing · HelpedPacing and resting maybe a bit more than i think i need seem to be better than any vitamin or therapy I’ve tried In context ↗
  • aggressive rest · HelpedDoing less than I feel I am capable of… In context ↗
  • krill oil and salmon oil / fish oil · Not saidKrill oil in the morning and salmon oil in the evening and an anti-inflammatory diet along with various other immune boosting supplements. In context ↗
  • anti-inflammatory diet · Not saidI’m eating an anti-inflammatory diet and taking all the right supplements and keeping a consistent bedtime… In context ↗
  • meditation and calming breath work · No changeI do meditate but don’t see it improving oxygen levels. In context ↗
  • B vitamins · Not saidOne supplement I took in addition to B vitamins for nerve health is In context ↗
  • lions mane, reishi, Cordyceps and Chaga mushrooms · Not saidLast week I made seven mason jars filled with mushroom tincture containing reishi, Cordyceps, Chaga and Lion’s Mane. In context ↗
  • Fitbit · Not saidSo, I got a Fitbit and can keep an eye on my pulse, and try to keep BPM under 105. In context ↗
  • Pfizer mRNA vaccine (two doses and a Moderna booster) · Worsefive mRNA vaccinations that didn’t help my PASC In context ↗
  • treadmill stress test · Much worseThis stress test required me to run several minutes, sprinting at the end. That day was severely damaging to my recovery. In context ↗
  • allergy meds, hydroxyzine, cetirizine and other OTC antihistamines · Helpedhydroxyzine is somewhat effective, but not without side effects In context ↗
  • low histamine diet · No changeLow histamine diet? Can’t say it helped me, and the restrictions only complicated things like no more lemons or avocados and other traditionally healthy foods. In context ↗
  • organic green coffee enemas · HelpedI finally relented, and it’s the weirdest damn thing but my sleep improved. In context ↗
  • salt and electrolytes · HelpedSalt and other electrolytes have been tremendously helpful for reducing pulse fluctuations and lightheadedness In context ↗
  • raw garlic cloves · WorseRaw garlic causes my PASC autoimmunity to flare. In context ↗
  • benfotiamine · Not saidI’ve been taking a different kind of thiamine called Benfotiamine, and when it runs out then I’ll try TTFD. In context ↗
  • ivermectin · Not saidI tried ivermectin and LDN, but because my insurance provider (Kaiser) cannot (will not) prescribe them to me, I am finding them through less than legal means. In context ↗
  • LDN · WorseDoesn’t seem to be helping and in some ways makes me feel worse. In context ↗
  • black seed oil (Nigella sativa) · Helpeda natural product that seems to be helping me In context ↗
  • GABA · Not saidI was taking GABA at night but it was causing minor convulsions and twitches In context ↗
  • cannabis (CBD/THC, full-spectrum cannabinoids) · HelpedSmall amounts of cannabis are helpful, accidentally overdoing it interferes with sleep and significantly raises resting pulse much too high In context ↗
  • magnesium (CALM) · Not said2 teaspoons of CALM (magnesium supplement) In context ↗
  • melatonin (Sleep3) · No changeMelatonin is a joke In context ↗
  • valerian, passion flower, skullcap, kava, l-theanine, chamomile, tulsi · No changeNone of it touches what’s wrong with me In context ↗
  • turmeric root and ginger · Not saidLiving in Hawaii I have access to fresh, whole, raw turmeric root that I eat nightly In context ↗
  • fat-soluble vitamins A, D, E & K · Not saidI do take fish oil and turmeric for inflammation, and the fat soluble vitamins A, D, E & K. In context ↗
  • Ambien (zolpidem) · WorseNot even responding to Ambien or other heavy duty sleep drugs. In context ↗
  • benzodiazepines · No changeBenzodiazepines made me very calm but I was still Wide-awake In context ↗
  • bee sting · Helpedlast summer I stepped on a Bee and I think the venom improved my symptoms. In context ↗
  • antibiotics · Much worseI took an ambulance to the ER after four days on antibiotics. In context ↗
  • resveratrol · No changebeen through through three bottles of resveratrol and couldn’t tell if it made any difference so stopped buying it. In context ↗
  • alcohol (about one drink a night) · Helpedone or two drinks can calm the immune system and nervous system down In context ↗
  • fungal medications · No changethe various fungal medications they gave me didn’t knock it out In context ↗
  • Ensure meal replacement · Not saidEnsure meal replacement FTW when I can’t even prepare a simple meal. In context ↗
  • intravenous saline · HelpedAt least I learned that night two bags of intravenous saline significantly reduced post-covid POTS. In context ↗
  • nicotine (vaping and patches) · HelpedNicotine patches for me have been Only Mildly helpful In context ↗
  • prayer · Helpedspend hours and hours in prayer and meditation daily In context ↗
  • methylene blue · WorseAbout a year ago I purchased methylene blue and both times I tried it developed stabbing pains in my liver(?) In context ↗
  • psilocybin and ayahuasca · WorseLaying flat tripping created PEM in me so I’m wary, despite beneficial insights. In context ↗
  • powdered cumin · HelpedI bought some and it seems to help me In context ↗
  • gabapentin · No changeKaiser Permanente will only offer me gabapentin and antidepressants. These don’t help, and may make things worse. In context ↗
  • statin drugs · No changeall my current doctor can offer me are antidepressants and statin drugs, neither of which help with post viral disabilities. In context ↗
  • urolithin-A · HelpedUrolithin-A helps me minorly which is far better than no help at all In context ↗
  • huperzine-A · HelpedCaused in me Minor stomach/G.I. upset but noticeably sharper more energized mind. In context ↗
  • collagen powder · WorseBody pain worsened significantly, urine was more funky. In context ↗
  • quercetin powder · WorseI (evidently) took too much at once of this bulk, fine-particulate, yellow powder and it gave me a furious case of the squirts. In context ↗
  • activated charcoal · Helpedsometimes activated charcoal supplement pills slow down or stop temporarily my gut dysbiosis. In context ↗
  • beef and simple carbs (comfort foods) · HelpedI often feel better with simple beef and carbs. In context ↗
  • GLP-1 · Worseall my doctor can prescribe for me at present is GLP-1 (made things worse) and metformin In context ↗
  • metformin · Not saidall my doctor can prescribe for me at present is GLP-1 (made things worse) and metformin, neither of which are adequate treatment. In context ↗
  • therapy · Worsefor me what passes as therapy has been next to useless, and at times counterproductive. In context ↗
  • Antidepressants (unspecified) · Worseand I felt slightly worse, absolutely zero help or improvement. In context ↗
  • CPAP and sleep apnoea treatment · Not saidI find it almost impossible to sleep with multiple straps and tubes all around my face In context ↗

Approaches: Diet · Pacing · Radical rest · 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. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they wereAfter
March 2020COVID-19 in the first wave; out of work from March 19I was exposed March 8 of last year and fell ill March 11. I’ve been out of work since March 19 with extreme fatigue In context ↗Severe
December 2020symptoms down from nearly two dozen but unable to work or shopDown from nearly 2 dozen; But still so bad I can’t work or do my own shopping. In context ↗Severe
April 2021crashed after a GP-ordered treadmill stress test; lost his forest walksThat day was severely damaging to my recovery. In context ↗Severe
May 2021as sick as ever; hospital tests found nothingThis is day 439 and I’m as sick as I’ve ever been. In context ↗Very severe
July 2021a little better after repeatedly bottoming outnow that I am in month 17 I am doing a little better than the past 16 months where I repeatedly bottomed out and needed help just surviving In context ↗Severe
December 2021downturn after the Moderna booster, with insomnia and flu-like symptomscan’t tell if I’m having a relapse that would’ve happened anyway or if the booster contributed to my recent downturn and worsening of symptoms In context ↗SevereCOVID vaccination as treatment
May 2022POTS and heart inflammation faded; ME/CFS still severeFortunately my POTS has faded over the past two years as did the inflammation around my heart. In context ↗Severe
March 202399% bedridden, Karnofsky 30I’m a 30 on the Karnofsky scale -99% bedridden- simply using a phone is extremely taxing. In context ↗Very severe
November 2023sudden unexplained worsening lasting about six daysBoth I and a long hauler friend 5000 miles away have gotten much worse the past six days or so In context ↗Severe
May 2024seated showers went from twice a month to twice a week by avoiding infections and stressI’ve gone from being able to take one or two brief sit-down showers a month to now able to take one or two brief sit-down showers per week In context ↗Severe
January 2025doing a little more than a year earlier, still homeboundThe good news is, I can do a little more today than I could even a year ago In context ↗Severe
February 2026went from very severe to moderate; can get the mail most daysSomehow, I've been blessed to go from very severe to moderate and can now get the mail most days, but not every day. In context ↗Moderate
July 2026still mostly homebound and pacing, but managing a day with minimal helpMy health remains extremely fragile, but at least now I can get through a day with minimal outside support, so long as I do not overexert In context ↗Moderate

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeart 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 malaiseWhen I push too hard, I may crash that same day or up to two days later. In context ↗
  • Sleep problemssleep remains one of my biggest issues… Not even Ambien helps for whatever is wrong in my body. In context ↗
  • POTS & dysautonomiaPOTS is improving over time but far from gone/resolved. In context ↗
  • Mast cell (MCAS) & allergiesI'm taking three or four different OTC antihistamines daily to help manage MCAS and other immune abnormalities In context ↗
  • Pain & fibromyalgiathe worse all my symptoms flare which include drug-resistant insomnia, tremors and spasms and muscle pain and sore throat. In context ↗
  • Gut problemssometimes activated charcoal supplement pills slow down or stop temporarily my gut dysbiosis. In context ↗
  • Light & noise sensitivityLacking the energy required simply to process sound In context ↗
  • BreathlessnessI don’t really get short of breath In context ↗
  • Heart symptoms & palpitationsthe tremors have mostly stopped and heart problems are significantly reduced In context ↗
  • Muscle weaknessCan’t stand up to shower or cook breakfast In context ↗
  • Neuropathy & tinglingI also have post Covid POTS and paresthesia and immunodeficiency and sleep issues etc. In context ↗
  • Anxiety & low moodBecause the body is not operating well at all, my mental health suffers. In context ↗
  • Flu-like symptomsMy nightly fevers have dropped to just one or two per week In context ↗
  • Loss of smell or tastethe phantom smells have passed, too In context ↗
  • Temperature regulationnow I’m more susceptible to cold and feeling chilled In context ↗
  • Vision problemsDon’t know if my vision will ever recover. In context ↗
  • Brain fogI also surprise myself regularly by intending to speak one word and an entirely different word came out of my mouth. In context ↗

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