Bedbound with ME/CFS, now a lot better but not fully recovered, credits rest and time

Condition: ME/CFS
At worst: Severe (mostly bedbound)
Ill before improving or writing: 6 years
Last post: Aug 2026

In their words

Condition: ME/CFSMy LC is ME/CFS so the idea is to stay at your baseline and hope you don't get worse. In context ↗
At worst: SevereI was completely bed ridden. Had no appetite. Couldn't even stand without feeling like I had just gone through a 3 day festival pushing my body past its limit everyday. In context ↗
Now: Much betterThankfully now Im mild and can do little workouts to not feel useless, but holy fuck is it still a struggle every day 5y later. In context ↗
Began after: COVIDSick since mid march.

Read from 179 of their posts and comments; links to the 56 this page draws on

Summary

A 25-year-old California man fell ill with COVID-19 in March 2020 and was bedbound that spring with daily gut problems, pressure headaches, breathlessness and post-exertional crashes. He improved slowly but had severe relapses, including around Christmas 2020. He credited rest, time, a strict vitamin regimen, pantoprazole and possibly diet changes, though he was unsure about the low-histamine diet, and by early 2021 he still had daily symptoms, could do only small workouts that still caused crashes, and was far from fully recovered.

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What they tried

What they credit

pantoprazole· Helped a lot · main rest and pacing· Helped a lot · main low histamine diet· Helped · main L-Citrulline Malate· Helped whole foods diet (no sugar, processed food or leftovers)· Helped whole foods diet (no sugar, processed food or leftovers)· Helped whole foods diet (no sugar, processed food or leftovers)· Helped daily sunlight· Helped Beet Root Powder· Helped Cialis· Helped time· Helped · main

Also tried

fasting· Helped Quercetin· Helpedsunglasses for light sensitivity· Helpedmelatonin· Helped Moderna and Novavax COVID vaccines· Helpedtwo other anti-acid medications· No changeZinc· No change probiotics (Align, Lactobacillus rhamnosus GG)· No change Nicotinic Acid (niacin)· No change famotidine· No change LDN (naltrexone)· No changeIbGard (peppermint oil pills)· Worseworking out (treadmill walks, weights, running, push-ups)· Worse Vitamin C· Worse kombucha· Worse ibuprofen· Worse penicillin· Much worse vitamin d3· Not said Selenium· Not said Desipramine· Not said Albuterol / salbutamol (Ventolin)· Not said

Their words about each treatment

IbGard (peppermint oil pills) · WorseShe did have my try the peppermint IB gaurd pills early on though. They did absolutely nothing but make me feel heartburn. In context ↗
working out (treadmill walks, weights, running, push-ups) · WorseNow if I try to workout I relapse hard. In context ↗
pantoprazole · Helped a lotPantoprazole has single handedly helped me through this whole experience. In context ↗
two other anti-acid medications · No changeTrued two other anti-acid medications but they didnt work. In context ↗
fasting · HelpedFasting has helped me ive noticed. Sometimes it does the opposite though. In context ↗
rest and pacing · Helped a lotWhat helped me most was pacing, diet, and letting time heal me. In context ↗
low histamine diet · HelpedI found time, pacing, and low histamine diet were the only things that helped me recover. In context ↗
vitamin d3 · Not saidThen later towards dinner time, I take Quercetin again and vitamin d3. In context ↗
Vitamin C · WorseI definitely feel like Vitamin C fucks with my stomach so I dont really take it tbh. In context ↗
Zinc · No changeAs for C, Zinc, and B-3, haven't taken them since in the past they haven't helped. In context ↗
Quercetin · HelpedSince starting quercetin this week, i have definitely felt an improvement. In context ↗
probiotics (Align, Lactobacillus rhamnosus GG) · No changei tried align early on and it did nothing for me. In context ↗
sunglasses for light sensitivity · HelpedI also had to buy sunglasses and wear them every day at work In context ↗
Nicotinic Acid (niacin) · No changeTodays my 3rd day and havent noticed much of a difference yet. In context ↗
melatonin · HelpedSo I've been taking melatonin daily for it. In context ↗
famotidine · No changeFamotidine was too weak but pantoprazole has worked wonderfully. In context ↗
kombucha · WorseInstantly got a headache and major fatigue. In context ↗
Moderna and Novavax COVID vaccines · HelpedOddly enough, I dont feel as fatigued as I used to post vaccine. In context ↗
L-Citrulline Malate · HelpedAs for L-Citrulline Malate, a redditor recommend it to me and I also felt like it slightly helped. In context ↗
Desipramine · Not saidThe anti-depressants was Desipramine, which I did see helped with stomach issues a little. In context ↗
LDN (naltrexone) · No changeI don't feel like it helped me but it has helped others in the cfs community. In context ↗
whole foods diet (no sugar, processed food or leftovers) · HelpedSwitch to a whole foods all fresh veggies and fruits heavy diet with lots of salmon and chicken. Has helped me a lot. In context ↗
penicillin · Much worse2 week course of penicillin has destroyed a lot of stomach progress In context ↗
ibuprofen · Worseit seemed like the ibuprofen is making me very sluggish and tired. I feel some chest tightness and it's a little harder to breath. In context ↗
daily sunlight · Helpedgetting some sunlight every day In context ↗
Beet Root Powder · HelpedAlso, i recommend Beet Root Powder. It dilates your blood vessels which could potentially help you. Been helping me recently thankfully. In context ↗
Cialis · HelpedTook me years to work up the courage to take Cialis. Its helped a bunch! In context ↗
time · Helpedhonestly just letting time heal me In context ↗
Albuterol / salbutamol (Ventolin) · Not saidGot prescribed albuterol even though I tried that in april and it didnt work for me except for like 2 days, followed by extreme anxiety and headaches. In context ↗

Approaches: PDE5 inhibitors · Proton pump inhibitors · Diet · 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
March 2020	COVID-19 onset; felt like a light cold, then lost appetiteMarch hit and I felt sickish, like a light cold and I got over it relatively quick. In context ↗	Mild
April 2020	bedbound with no appetite, too weak to standI was completely bed ridden. Had no appetite. In context ↗	Severe
August 2020	walking on the treadmill up to 1.5 miles and light weights; still daily stomach issuesBut have gotten way better than before. In context ↗	Mild
November 2020	big relapse after pushing exercise too hardstill did it until i got hit with a big relapse In context ↗	Mild
December 2020	could do push-ups without chest pain after vitamin regimen, pantoprazole, low-histamine diet and restAfter 9 fucking months. I can do some pushups and my chest doesnt start hurting immediately. In context ↗	Mild
24 December 2020	nasty relapse on Christmas Eve, GI symptoms explodedHad a nasty relapse, way worse than past ones, on Christmas eve. In context ↗	Moderate
March 2021	fatigue much better after vaccination and being off workI dont feel as fatigued as I used to post vaccine. In context ↗	Mild	Time and spontaneous remission
May 2021	progress stagnated after the vaccine gainsi did a little better after the vaccine but ive stagnanted In context ↗	Mild
March 2022	wisdom tooth infection and 10-day penicillin course wrecked stomach progressmy stomach is a mess and feels like it used to half a year ago In context ↗	Moderate
July 2022	able to attend music festivals again, 3-4 hours at a timeI've lately been able to go to music festivals again!!!! In context ↗	Mild
October 2022	regressed for about two months after dancing at two ravesI did this over summer and I regressed probably for 2 months In context ↗	Moderate
January 2023	whole-foods, fresh-vegetable and salmon diet helped a lotSwitch to a whole foods all fresh veggies and fruits heavy diet with lots of salmon and chicken. Has helped me a lot. In context ↗	Mild	Low-histamine diet
March 2023	put himself at about 80% of his old self; festivals possible, food tolerance still limitedNot 100% but id say 80% from who I was. In context ↗	Mild
June 2024	rated himself mild ME/CFS, still with day-to-day symptomsVery much mild me/cfs atm thankfully In context ↗	Mild
September 2025	mild, does small workouts, can dance at festivals for a couple of days then crashesThankfully now Im mild and can do little workouts to not feel useless In context ↗	Mild

Adverse events

Albuterol / salbutamol (Ventolin)“Got prescribed albuterol even though I tried that in april and it didnt work for me except for like 2 days, followed by extreme anxiety and headaches.” In context ↗ Side effects
Vitamin C“I take Vitamin C (I take C kind of irregularly since it seems to set my stomach acid off pretty easily)” In context ↗ Gut side effects
Probiotics and fermented foods“Instantly got a headache and major fatigue. And now I feel like trash after 2 hours since I drank it.” In context ↗ Side effects
Everyday exercise and activity“I tried pushing harder and harder in july and did decent progress even though i felt weird the whole time. Until i had a hard relapse and stopped.” In context ↗ Made symptoms worse
Pantoprazole (Protonix)“I feel like the PPI i was taking was making my shortness of breath worse.” In context ↗ Made symptoms worse
COVID vaccination as treatment“Fever and body aches hit last night.” In context ↗ Side effects
Low-dose naltrexone“On 1.5mg and been on it 4 days. Have been feeling more tired than usual on it. Also more headaches and just feelings of malaise.” In context ↗ Side effects
COVID vaccination as treatment“I finally got out of bed and I now feel fatigue. I feel slowish and weaker than I normally am.” In context ↗ Side effects
Ibuprofen (Advil, Nurofen, Motrin)“it seemed like the ibuprofen is making me very sluggish and tired. I feel some chest tightness and it's a little harder to breath.” In context ↗ Side effects
Penicillin“my stomach is a mess and feels like it used to half a year ago. I can barely tolerate anything anymore” In context ↗ Gut side effects
Baicalein and quercetin“I tried quercitin but i have a reaction to it sadly so i had to stop.” In context ↗ Side effects
COVID vaccination as treatment“the vaccines do set me back about a month or 1.5 months in terms of my baseline dropping” In context ↗ Made symptoms worse
COVID vaccination as treatment“i did notice a drop in baseline a little bit. Very subtle and hard to notice though tbh. Took about a month to get over.” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Flu-like symptoms Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Muscle weakness POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Temperature regulation Vision problems

Their words about their symptoms

Post-exertional malaiseI can do little body weight workouts that do make me crash and feel shitty In context ↗
Gut problemsOne year after vaccine, still habe daily stomach problems. In context ↗
Headaches & migraineI got none unless im crashing which rarely happens In context ↗
Brain fogHeadaches, brain fog, massive gi issues In context ↗
Breathlessnessmy sob isnt as bad as it used to be In context ↗
Heart symptoms & palpitationsmy random spike in heart palpitations throughout the day or when I stand up In context ↗
POTS & dysautonomiaI started to feel dizzy and off balance out of nowhere In context ↗
Sleep problemsMy body wakes me up after 3-4 hours and i stay awake In context ↗
Pain & fibromyalgiaMost of my back and stomach has weird pains and aches daily. In context ↗
Muscle weaknessI get massive headaches and feel weak and shitty for the next couple of days In context ↗
Light & noise sensitivityLight was way too bright. In context ↗
Vision problemsI felt like I couldnt focus in on stuff. In context ↗
Temperature regulationin the beginning my body has no temperature control and i felt cold when it was hot or hot when it was cold In context ↗
Flu-like symptomsAlso been having a achy/sore-ish throat and ear pain for about a month now. In context ↗
Anxiety & low moodI have lots of anxiety when it comes to mind/body altering substances. In context ↗

Bedbound with ME/CFS, now a lot better but not fully recovered, credits rest and time

Ask Miruvor AI

What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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