ME/CFS
Severe → relapsedIll 4 years before improving or writingNeeds ongoing treatment
Housebound and largely bedbound with ME/CFS; drugs helped somewhat but he relapsed
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2026
In their words
- At worst: Severe
the weightlifting was the final straw that made me 90% bedbound
In context ↗ - Now: Relapsed
i was in remission for 7 months with no symptoms though just recently ... but i relapsed after a recent infection and im feeling terrible again, back in disability
In context ↗ - Began after: another virus
i did have viral onset. some sort of stomach bug 3 1/2 years ago. never been the same since.
- Says they never had: Light & noise sensitivity
i don’t have any sensitivities to light or sound or anything
Read from 260 of their posts and comments; links to the 62 this page draws on
- Apr 2021
- Feb 2026
- May 2022
- Apr 2021
- Feb 2021
- Oct 2021
- Apr 2021
- Oct 2021
- Oct 2021
- Jun 2021
- Feb 2021
- Jan 2022
- Jul 2022
- Jan 2022
- Sep 2021
- Apr 2022
- Jul 2022
- May 2021
- Apr 2021
- Apr 2022
- Jun 2021
- Jun 2021
- Jul 2021
- Jul 2022
- Oct 2021
- Nov 2021
- May 2022
- Jan 2022
- Apr 2021
- Aug 2021
- Feb 2022
- Apr 2023
- Oct 2022
- Sep 2022
- Mar 2023
- Mar 2023
- May 2023
- Apr 2023
- Mar 2024
- Feb 2026
- Aug 2026
- Jul 2022
- Jul 2021
- Apr 2021
- May 2021
- Apr 2021
- Apr 2021
- May 2021
- Apr 2021
- Jul 2021
- Apr 2022
- Nov 2021
- Apr 2023
- Feb 2026
- Mar 2021
- Apr 2022
- Apr 2022
- Apr 2021
- Jun 2021
- Dec 2020
- Apr 2022
- Oct 2021
Summary
A man who fell ill at 19 after a stomach bug was mild for three years, then became housebound and largely bedbound after exercising while undiagnosed. From 2021 abilify, mestinon and other drugs helped somewhat, but he remained moderate to severe and used an electric wheelchair. He had spent over $10,000 on unhelpful treatments and doctors.
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What they tried
What they credit
Also tried
electric wheelchair· Helped a lotstrict elimination diet then whole food plant based diet· Helpedstrict elimination diet then whole food plant based diet· Helpedstrict elimination diet then whole food plant based diet· Helpedallicin and grapefruit seed extract· Helpedallicin and grapefruit seed extract· Helpedprobiotics and prebiotics· Helpedherbal mixture for gut lining· Helpedlow dose naltrexone· Helpedl carnitine· Helpedapple watch heart rate monitoring· Helpedativan· Helpedmetoprolol· Helpedhigh dose omega 3· Helpedbcaa· Helpedcold shower· Helpedblue light blocking glasses· Helpedsalt and electrolytes· Helpedsolriamfetol· Helpediron infusion and iron supplementation· No changevalcyte· No changecreatine· No changecoenzyme q10· No changenadh· No changeb12 injections· No changeglutathione injections and intranasal spray· No changefludrocortisone· No changetens machine vagal nerve stimulator· No changemindfulness practice· No changeivabradine· No changeclonidine· No changevericiguat· No changearginine and citrulline· No changeguanfacine· No changesodium phenylbutyrate (NaPb)· No changeTUDCA· No changeritalin· No changevitamin d· No changehigh dose thiamine· Worsenac· Worsefenofibrate· Worselyrica· WorseCOVID vaccination as treatment· Worseworking out / exercise· Much worsehydroxychloroquine· Not saidlactoferrin· Not said
Their words about each treatment
- working out / exercise · Much worse
biking like that every day seriously dropped my baseline from mild to moderate over time and then that last workout plummeted me to severe real quick
In context ↗ - strict elimination diet then whole food plant based diet · Helped
did strict elimination diet for a few months, then slowly added foods back and stuck with a whole food plant based diet for like a year
In context ↗ - allicin and grapefruit seed extract · Helped
i’ve had success with diet changes, things like allicin and grapefruit seed extract for bacterial overgrowth
In context ↗ - probiotics and prebiotics · Helped
probiotics and prebiotics on occasion (these all mostly fixed my gut problems but it was a long journey)
In context ↗ - herbal mixture for gut lining · Helped
i definitely think the mixture helped a bit, at least for my “leaky gut” and pots
In context ↗ - iron infusion and iron supplementation · No change
i had an iron infusion and my ferritin levels increased to well above normal. over 100. i had no change in symptoms
In context ↗ - low dose naltrexone · Helped
ldn eliminated my chronic sore throats
In context ↗ - valcyte · No change
i was on it for 4 months with no noticeable benefit so i gave it up
In context ↗ - creatine · No change
creatine hasn’t helped at all noticeably yet
In context ↗ - l carnitine · Helped
i use sparingly with some slight benefit
In context ↗ - coenzyme q10 · No change
i tried both nadh and coenzyme q10 but didn’t get much benefit
In context ↗ - nadh · No change
nadh didn’t do much for me
In context ↗ - pacing and heart rate monitoring · Helped
low dose abilify, high dose omega 3, pacing, have all helped substantially
In context ↗ - apple watch heart rate monitoring · Helped
i use the apple watch to heart rate track and it’s been such a good addition to my daily routine
In context ↗ - b12 injections · No change
i did 3x a week injections for quite some time even despite normal serum levels. sadly i didn’t get much benefit
In context ↗ - glutathione injections and intranasal spray · No change
i did glutathione injections 3x a week for about 6 weeks without much benefit. i also did intranasal glutathione and didn’t get much benefit
In context ↗ - low dose abilify · Helped
i’ve been on low dose abilify for a month and a half now. it’s definitely helping a bit
In context ↗ - mestinon · Helped
mestinon has really been a great addition to my life
In context ↗ - high dose thiamine · Worse
i had a paradoxical reaction after doing it for a few days and thought i was dying
In context ↗ - ativan · Helped
i personally use ativan once or so a month before i go to an appointment and it helps a lot
In context ↗ - celebrex · Helped
celebrex has helped me a lot
In context ↗ - fludrocortisone · No change
this didn’t help me much at all
In context ↗ - metoprolol · Helped
i’ve only been on this beta blocker for 2 weeks now but it’s helping so much more than the propranolol did
In context ↗ - electric wheelchair · Helped a lot
it’s increased my functioning 10 fold
In context ↗ - high dose omega 3 · Helped
i’ve also started supplementing high dose omega 3s which seems to help. i’m taking 3000mg a day
In context ↗ - nac · Worse
i’ve used nac and sadly it just makes me feel terrible
In context ↗ - fenofibrate · Worse
it caused me significant pem
In context ↗ - tens machine vagal nerve stimulator · No change
i tried the do it yourself tens machine vagal nerve stimulator and it wasn’t effective for any of my symptoms
In context ↗ - kpax immune · Helped
kpax immune. quite expensive but tbh it’s working well for me
In context ↗ - bcaa · Helped
i just take a branch chained amino acid! about 7grams daily
In context ↗ - mindfulness practice · No change
general mindfulness practice has left me with a better view of the world. but physically these things have done absolutely nothing to help me
In context ↗ - cold shower · Helped
a cold shower right before bed has helped me
In context ↗ - blue light blocking glasses · Helped
i use blue light blocking glasses of good quality before bed
In context ↗ - salt and electrolytes · Helped
drinking lots of electrolytes and hydrating a lot helps manage my pots but does little if anything for my fatigue
In context ↗ - hydroxychloroquine · Not said
im starting hydroxychloroquine this week to start to address it
In context ↗ - ivabradine · No change
zero benefits for my POTS or any of my symptoms
In context ↗ - lyrica · Worse
sadly i do not benefit much, it actually makes me feel quite horrible
In context ↗ - midodrine · Helped
my stack at the time was: propranolol 20-40mg TID, mestinon 60mg TID, midodrine 2.5mg TID, marijuana
In context ↗ - clonidine · No change
it was not effective for my symptoms at all
In context ↗ - vericiguat · No change
i trialed vericiguat for 3 months with arginine/citruline. no success
In context ↗ - arginine and citrulline · No change
i tried vericiguat with a combo of arginine/citrulline. a very potent combo for NO boosting. very minor benefits, was pretty disappointed
In context ↗ - guanfacine · No change
i trailed guanfacine and NAC for 2 months without effect
In context ↗ - lactoferrin · Not said
ive trialed lactoferrin intermittently
In context ↗ - sodium phenylbutyrate (NaPb) · No change
i didnt really notice much i dont think, besides some gastro side effects
In context ↗ - TUDCA · No change
i took 3g NaPb and 1g TUDCA for 6 weeks
In context ↗ - ritalin · No change
only ritalin. and just like ritalin, nadh didn’t do much for me
In context ↗ - marijuana · Helped
marijuana was really helping my me/cfs symptoms. i was recently in remission for like 7 months
In context ↗ - solriamfetol · Helped
solriamfetol is preferred for me. the stimulating effect lasts throughout the day
In context ↗ - vitamin d · No change
the supplements don’t give much benefit. i take them because my vitamin d is low
In context ↗ - COVID vaccination as treatment · Worse
the first one made me feel extra terrible as well
In context ↗
Approaches: POTS medication · Other drugs and medicines · Pacing · Supplements
Their path
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
| When | What happened | Where they were | After |
|---|---|---|---|
| 2017 | post-viral onset after a stomach bug; mild for three yearsi was mild for 3 years but recently went to moderate/severe after a period of overexertionIn context ↗ | Mild | |
| 2020 | worsened to moderate from biking 6 miles every other day while undiagnosedthe biking slowly brought me from mild to moderate cfsIn context ↗ | Moderate | |
| late 2020 | crashed to bedbound after heavy weightlifting sessionsthe weightlifting was the final straw that made me 90% bedboundIn context ↗ | Severe | |
| May 2021 | felt better and improving a bit after adding low-dose abilify and mestinoni have felt better overall since including it and i finally feel like i’m improving a bit after being mostly in bed for 4 monthsIn context ↗ | Severe | Low-dose Abilify / aripiprazole |
| mid 2025 | seven symptom-free months on POTS drugs and daily marijuanai was recently in remission for like 7 monthsIn context ↗ | Recovered | |
| February 2026 | relapsed after an infection, back in disabilityi relapsed after a recent infection and im feeling terrible again, back in disabilityIn context ↗ | Severe | |
| 2026 | still disabled, trialing solriamfetol with beta blockersalso have quite severe potsIn context ↗ | Severe |
Adverse events
- Everyday exercise and activity“exercise made my cfs severe and has ruined my life” In context ↗ Made symptoms worse
- COVID vaccination as treatment“the first one made me feel extra terrible as well” In context ↗ Made symptoms worse
- COVID vaccination as treatment“second vaccine was brutal, felt absolutely terrible for a full day with chills, flu like symptoms, headache” In context ↗ Side effects
- Thiamine / benfotiamine“i had a paradoxical reaction after doing it for a few days and thought i was dying” In context ↗ Side effects
- Metoprolol (Lopressor, Toprol)“i suspect my beta blocker is contributing to some of my terrible fatigue as starting it coincided with a worsening of symptoms” In context ↗ Side effects
- Mestinon / pyridostigmine“i had muscle twitching and stomach pains as side effects on the mestinon for the first week or so” In context ↗ Side effects
- Mestinon / pyridostigmine“had chills the first few weeks though” In context ↗ Side effects
- Mestinon / pyridostigmine“when i increase my dose a bit much i get that weak feeling as well” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“besides chills occasionally” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“i tried increasing my dose and had worsening of symptoms” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“maybe slight ataxia? but im not really sure” In context ↗ Side effects
- Celecoxib (Celebrex)“it gave me bad chest pains so i only take it if i really need it” In context ↗ Side effects
- Fenofibrate (Tricor)“it caused me significant pem” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine)“i've used nac and sadly it just makes me feel terrible” In context ↗ Made symptoms worse
- Lorazepam (Ativan)“a dose of 1.5mg is my sweet spot. increasing further makes my symptoms a bit worse” In context ↗ Made symptoms worse
- “i experienced very bad nausea” In context ↗ Gut side effects
- TUDCA“besides some gastro side effects (which was to be expected)” In context ↗ Gut side effects
- Cannabis (THC, marijuana)“if i wasnt well hydrated or medicated for my POTS it would give me very bad tachycardia” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
i have very severe PEM, fatigue, POTS
In context ↗ - Brain fog
brain fog still impacts me but it’s much less debilitating than it used to be
In context ↗ - POTS & dysautonomia
also have quite severe pots
In context ↗ - Gut problems
my ibs went in to remission after overhauling my diet
In context ↗ - Pain & fibromyalgia
i have a lot of pain sadly
In context ↗ - Muscle weakness
i suffer from PEM, brain fog, debilitating fatigue, muscle weakness, orthostatic intolerance
In context ↗ - Headaches & migraine
ive had incredibly bad headaches, pressure and migraine like
In context ↗ - Heart symptoms & palpitations
further chest pains
In context ↗ - Anxiety & low mood
without my mestinon my fight or flight is on overdrive all day and my anxiety is significantly worse
In context ↗ - Flu-like symptoms
i had persistent soar throat but it’s now resolved with the aid of low dose naltrexone
In context ↗ - Sleep problems
since starting it my sleep has improved oddly enough
In context ↗ - Vision problems
unusual visual perceptions
In context ↗ - Mast cell (MCAS) & allergies
i had very typical mcas reactions in the beginning of my illness but not so much at all now
In context ↗
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