Bedbound with ME/CFS, improved on metronidazole then relapsed and worse

Condition: ME/CFS
At worst: Very severe (bedbound, unable to do basic care)
Ill before improving or writing: 11 years
Last post: Oct 2026

In their words

Condition: ME/CFSmy ongoing ME/CFS diagnosed by a bunch of specialist was a bacterial infection as well In context ↗
At worst: Very severeI repeatedly did 10-15 mins exercise once a week for 3-4 weeks, and ended up very severe In context ↗
Now: RelapsedI been on and off bedbound now for the last 3 years ... rn since last year it’s been 97-100% In context ↗
Began after: a bacterial or tick-borne infectionI found out 10 years ago my ongoing ME/CFS diagnosed by a bunch of specialist was a bacterial infection as well.
Says they never had: Anxiety & low moodthe psychologist couldn't find any signs of depression, anxiety or anything else

Read from 94 of their posts and comments; links to the 46 this page draws on

Summary

Fell ill in 2015 after an infection and was bedbound until a two-week antibiotic course brought five years of remission, when they studied, worked and hiked. COVID and new infections brought ME/CFS back; metronidazole gave 8-9 months of improvement, but steroids and graded exercise at a physiotherapist left them worse. By 2026 they were 99% bedbound; rapamycin shortened their PEM.

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What they tried

What they credit

antibiotics· Helped a lot · main · wore off antifungals· Helped b1· Helped melatonin· Helped

Also tried

compression socks, water with salt· Helped a lot compression socks, water with salt· Helped a lotcombination therapy of a bunch of different antiviral meds· Helpedb complex· Helped B6· Helped rapamycin· Helped L-tryptophan· Helped GABA and taurine· Helped GABA and taurine· Helped oregano oil· Helped b12 injections· Helped · wore off ice pack on neck· Helped meditation· Helped cannabis· Helped Valtrex / valaciclovir· No change iron supplement· No change vitamin D· No change LDN· No change LDA· No change Ivabradine· No change H1 antihistamines· No change H2 antihistamines· No change low histamine diet· No change quercetin· No change C vitamin· No change pacing· No changehigh-fat, high-calorie diet· No changepain medication· No changebirth control· Worse coffee / caffeine· Worse anti inflammatory meds· Worse steroids· Much worse GET and physiotherapy exercise· Much worse Xolair (omalizumab)· Much worse psychologist· Much worse Metronidazole (Flagyl)· Not said Progestin-only birth control (mini pill, implant or shot)· Not said

Their words about each treatment

antibiotics · Helped a lotAfter antibiotics all my symptoms went away and I lost my diagnosis and went back to school. In context ↗
antifungals · HelpedI had to do both antivirals, antibiotics and antifungals, it’s been a long journey but it helped me to get out of very severe In context ↗
Valtrex / valaciclovir · No changeValaciclovir didnt work for my EBV sadly In context ↗
combination therapy of a bunch of different antiviral meds · HelpedI had to use combination therapy of a bunch of different antiviral meds I got from a doctor at the hospital. In context ↗
b1 · HelpedI been taking b1 every single day for around 7 years now, after finding out it helped both my POTS and ME In context ↗
b complex · HelpedTaking a b complex has helped my symptoms In context ↗
B6 · HelpedI been on 100mg B6 for around 10 years everyday, I never had an issue with it In context ↗
iron supplement · No changeGetting my levels up to normal doesnt change anything though. In context ↗
vitamin D · No changeI had severely low d, getting it up didnt do a single thing. In context ↗
steroids · Much worseI went from mild to severe in a couple of weeks on steroids. I still haven’t regained my pre steroid baseline In context ↗
GET and physiotherapy exercise · Much worseGET made me so much worse. I only did 15 mins, very slow and careful workout once a week and I deteriorated each time. In context ↗
Xolair (omalizumab) · Much worseI went from being able to leave the house a couple of times a week for short periods to almost fully bedbound. In context ↗
rapamycin · HelpedSo far, I noticed less severe PEM alongside a shorten period of time with PEM. In context ↗
LDN · No changeI tried LDN, LDA, antihistamines, Ivabradine and a range of other things without effects. In context ↗
H1 antihistamines · No changeI been on diff antihistamines both H1 and H2, nothing worked. In context ↗
H2 antihistamines · No changeYes, I was put on both alongside other antihistamines. Didnt change anything. In context ↗
low histamine diet · No changeI also did a low histamine diet and nothing. In context ↗
quercetin · No changehe gave me some supplements for it such as C vitamin, quercetin etc. Alongside antihistamines, I been on diff antihistamines both H1 and H2, nothing worked. In context ↗
C vitamin · No changehe gave me some supplements for it such as C vitamin, quercetin etc. In context ↗
melatonin · HelpedFor me personally melatonin has been amazing, it even has helped regulate my immune system in higher doses In context ↗
L-tryptophan · HelpedPersonally I swear by tryptophan and a clinic a friend of mine goes to recommend it for sleep over magnesium any day. In context ↗
GABA and taurine · HelpedGABA, Taurine and some other supplements helps my wired a tiredness issues so I don’t really have much of an issue with it In context ↗
oregano oil · HelpedIt helps me a bit if I take drop of oregano oil everyday 3x a day In context ↗
compression socks, water with salt · Helped a lotboth compression socks and lots of water with salt should help a bit, at least that’s what my doctor recommended for reduced blood volume in me. I notice a huge difference In context ↗
b12 injections · Helpedtaking extreme high B12 injections 10,000mcg helped massively reduce PEM and other symptoms the first 3 days, they it all went back to normal In context ↗
ice pack on neck · Helpeda cold ice pack wrapped up in a towel, place it on my neck, it helps but yeah it’s awful In context ↗
psychologist · Much worseI was forced to go to a psychologist when I was severe which caused a 3 month long crash In context ↗
meditation · HelpedYeah it helps my mental health a lot. My fav is Waking up app, it’s incredible. In context ↗
pacing · No changeWith my ME even pacing for months on end with no PEM I still experience symotoms In context ↗
birth control · WorseI don’t tolerate birth control. I tried many different ones even gotten the plastic thing in my arm, and had to get it removed shortly after due to allergic reaction In context ↗
cannabis · HelpedCannabis has had that effect if I get it just right, but also the opposite for me. It triggers my POTS which in turn trigger restless thoughts In context ↗
coffee / caffeine · Worseeven if I have it early in the day I cannot sleep at night well, and in turn messing with my sleep made me worse In context ↗
high-fat, high-calorie diet · No changeI try to eat lots of fats and also try my best to eat 1900-2000 calories a day. I’m 46.5 kg. In context ↗
anti inflammatory meds · WorseAnti inflammatory meds make me worse too. In context ↗
pain medication · No changeWorst part is no pain medication has been able to touch it. In context ↗
Metronidazole (Flagyl) · Not saidHad an awful time on it tho, insomnia and constant nausea, threw up a lot In context ↗
Progestin-only birth control (mini pill, implant or shot) · Not saideven gotten the plastic thing in my arm, and had to get it removed shortly after due to allergic reaction In context ↗

Approaches: Antibiotics · Antifungals · 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. 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

When	What happened	Where they were	After
2015	fell ill after an infectionI got sick back in 2015 so it’s been awhile In context ↗	Severe
about a year later	two-week antibiotic course brought years of remission; back to school, work and hikingI just did a two weeks course of antibiotics and went from bedbound to be able to go back to school, study, work, hiking so on. In context ↗	Recovered	Antibiotics (unspecified)
—	crashed back to bedbound after covid and other infections picked up travellingThen covid hit and some other infections including ones I picked up while travel in and it was eventually back to bedbound. In context ↗	Severe
—	metronidazole gave 8-9 months of improvement; could swim and take road tripsWent from bedbound to be able to go out to the beach swimming and do car road trips etc. In context ↗	Moderate	Antibiotics (unspecified)
2026-02	crashed from mild to severe on steroidsI went from mild to severe in a couple of weeks on steroids. In context ↗	Severe
2026	crashed to very severe after graded exercise at a physiotherapistI repeatedly did 10-15 mins exercise once a week for 3-4 weeks, and ended up very severe. In context ↗	Very severe
2026-10	still 99-100% bedboundI’m 99% bedbound, can barely sit up in bed (and for a shot period of time) In context ↗	Very severe

Adverse events

Metronidazole (Flagyl)“Had an awful time on it tho, insomnia and constant nausea, threw up a lot” In context ↗ Insomnia from treatment
Metronidazole (Flagyl)“insomnia and constant nausea, threw up a lot but managed to keep it down the first 2 h after taking it” In context ↗ Gut side effects
Thiamine / benfotiamine“Stuff I got was tachycardia, feeling nauseous, hot flushes, some muscle tightening especially around my neck, feeling just uncomfy” In context ↗ Heart rhythm problems
Thiamine / benfotiamine“I had some bad reactions when I first started but it will pass after a bit ... Stuff I got was tachycardia, feeling nauseous, hot flushes, some muscle tightening especially around my neck” In context ↗ Side effects
Corticosteroid pulses“Steroids ruined me ... I went from mild to severe in a couple of weeks on steroids. I still haven’t regained my pre steroid baseline” In context ↗ Made symptoms worse
Graded exercise therapy (GET)“GET made me so much worse. I only did 15 mins, very slow and careful workout once a week and I deteriorated each time.” In context ↗ Made symptoms worse
Graded exercise therapy (GET)“I repeatedly did 10-15 mins exercise once a week for 3-4 weeks, and ended up very severe.” In context ↗ Made symptoms worse
Omalizumab / Xolair“I went from being able to leave the house a couple of times a week for short periods to almost fully bedbound. Even after stopping I never recovered properly. PEM became much more severe” In context ↗ Made symptoms worse
Progestin-only birth control (mini pill, implant or shot)“even gotten the plastic thing in my arm, and had to get it removed shortly after due to allergic reaction” In context ↗ Allergic reaction / anaphylaxis
H1 antihistamines (unspecified)“Some that I tried just made me sleepy and that was it.” In context ↗ Side effects
CBT and psychotherapy“I was forced to go to a psychologist when I was severe which caused a 3 month long crash” In context ↗ Made symptoms worse
Cannabis (THC, marijuana)“It triggers my POTS which in turn trigger restless thoughts and just feeling uncomfortable.” In context ↗ Made symptoms worse
NSAIDs (unspecified)“Anti inflammatory meds make me worse too.” In context ↗ Made symptoms worse
Caffeine and coffee“even if I have it early in the day I cannot sleep at night well, and in turn messing with my sleep made me worse” In context ↗ Insomnia from treatment

Symptoms mentioned

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

Their words about their symptoms

Post-exertional malaiseI did 1h non stop and had a 4-5 day crash In context ↗
Brain fogit made me slowly feel more fatigued, more brainfoggy, insomnia etc. In context ↗
POTS & dysautonomiabaaaad orthostatic intolerance, terrible neuropathy and just so much more In context ↗
Sleep problemssleep dysfunction In context ↗
Pain & fibromyalgiaI been living with daily widespread chronic pain for years. In context ↗
Headaches & migrainehad also migraines before which I no longer have In context ↗
Gut problemsI have pretty bad gastroparesis and each time I eat I get a lot of stomach pain from the food being stuck there In context ↗
Light & noise sensitivityI cannot handle music at all In context ↗
Heart symptoms & palpitationsmy tachycardia was also extreme before upon standing I had 150-180bpm now it’s like 120bpm when standing In context ↗
Muscle weaknessTriggers my POTS and feel extreme muscle weakness In context ↗
Neuropathy & tinglingterrible neuropathy In context ↗
Flu-like symptomsI still experience symotoms such as an awful sore throat everyday when I wake up In context ↗
Temperature regulationI would sometimes wake up feeling hot, sometimes cold In context ↗

Bedbound with ME/CFS, improved on metronidazole then relapsed and worse

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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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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