ME/CFS
Severe → relapsedIll 10 years before improving or writing
Housebound with ME/CFS, Bartonella treatment and naltrexone helped, then set back by COVID
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 10 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
My CFS was triggered by food poisoning and gradually I got sicker over 6 months
In context ↗ - At worst: Severe
I was on them for about 4-5 months straight with zero improvement and started slipping into the severe category
In context ↗ - Now: Relapsed
Treating the bartonella infection, while not curing me, has helped me move back to the mild category ... I go up and down pretty regularly, housebound at the moment
- Began after: a bacterial or tick-borne infection
My CFS was triggered by food poisoning
Read from 30 of their posts and comments; links to the 22 this page draws on
Summary
Dusk 43395 fell ill after food poisoning and became housebound at times with ME/CFS, gut dysbiosis, SIBO and later POTS, hypermobility and histamine problems. During a 4-5 month antibiotic course they slipped into the severe category, though they also reported that treating Bartonella helped them back to mild; low-dose naltrexone gave a solid improvement in fatigue and pain. Flares and a COVID infection set them back.
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What they tried
What they credit
Also tried
Tramadol· Helped a lotnaturopath· Helpedremedial massage· Helpedanti inflammatory/pain meds· HelpedEpsom salt bath· Helpedgentle stretching· Helpedhigh dose vit C· Helpedquercetin· Helpedhigh waisted bike shorts and shapewear· Helpedtinted glasses (FL41)· Helpedmethylene blue· No changeanti fungal treatments· Worseanti parasitic treatments· WorseConcerta / ADHD medication· Worseivabradine· Worseantibiotics· Much worse
Their words about each treatment
- LDN · Helped a lot
I had a tonne of trouble with LDN when I tried to take it at night, switched to the morning and built up to 3mg and it was a huge game changer
In context ↗ - treating the bartonella infection · Helped
Treating the bartonella infection, while not curing me, has helped me move back to the mild category
In context ↗ - antibiotics · Much worse
I briefly went on antibiotics but they just made everything so much worse
In context ↗ - anti fungal treatments · Worse
did a lot of rounds of antibiotics and anti parasitic, anti fungal treatments to clear things up, the final result being a gut very very devoid of the bacteria levels it needs to function normally
In context ↗ - naturopath · Helped
so far everything he's suggested has helped with what he suggested it for
In context ↗ - remedial massage · Helped
I get remedial massage regularly and it really helps
In context ↗ - anti inflammatory/pain meds · Helped
I always take anti inflammatory/pain meds an hour or so before hand which helps lessen the impact
In context ↗ - Epsom salt bath · Helped
Soaking in a bath in Epsom salts after really helps me too
In context ↗ - Concerta / ADHD medication · Worse
taking ADHD medication that I was perfectly fine with before I got CFS makes me crash so badly that I couldn't move for several days after a single pill
In context ↗ - gentle stretching · Helped
gentle stretching has actually helped my pain a lot
In context ↗ - high dose vit C · Helped
high dose vit C and quercetin really helped with histamine issues
In context ↗ - methylene blue · No change
I was put on methylene blue to treat a bacterial infection that apparently responds well to it, I didn't gain any positive effect from it symptom wise but I didn't get any negatives either
In context ↗ - high waisted bike shorts and shapewear · Helped
I find high waisted bike shorts and shapewear to be the easiest and comfiest
In context ↗ - Tramadol · Helped a lot
I felt absolutely amazing for those few days I was on it
In context ↗ - ivabradine · Worse
the only problematic side effect was bad headaches. I stuck with it for a little while but the headaches didn't ease so I stopped taking it and they vanished
In context ↗ - tinted glasses (FL41) · Helped
The only thing that's helped me with this is getting tinted glasses from a specialised optometrist to combat light sensitivity
In context ↗
Approaches: Antibiotics
Their path
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | CFS began after food poisoning, worsening over six monthsMy CFS was triggered by food poisoning and gradually I got sicker over 6 monthsIn context ↗ | Mild | |
| about 2021 | months of antibiotics for Bartonella; slipped into the severe categoryI was on them for about 4-5 months straight with zero improvement and started slipping into the severe categoryIn context ↗ | Severe | |
| 2023 | moved back to the mild category after treating BartonellaTreating the bartonella infection, while not curing me, has helped me move back to the mild categoryIn context ↗ | Mild | Antibiotics (unspecified) |
| 2023-07-21 | housebound again after a good monthI go up and down pretty regularly, housebound at the moment but had a month a little while ago where I was able to go away for 4 days with only a minor crash afterwardsIn context ↗ | Moderate | |
| 2025-03-20 | symptoms worsened until they could not stand for more than a few minutesmy symptoms got worse enough that I could no longer stand for more than a few minutesIn context ↗ | Severe | |
| 2025-10-01 | crashed into a terrible flareThen I crashed into a terrible flare and put even more weight on than I originally haveIn context ↗ | Moderate | |
| 2026-02-06 | diagnosed with POTS, HSD and histamine problems; waiting for researchMore recently was diagnosed with POTS, HSD, and definitely some weird histaminey things going on so more focussing on those nowIn context ↗ | Moderate |
Adverse events
- Antibiotics (unspecified)“repairing damage from 2 straight years of antibiotics trying to get rid of bacterial overgrowth” In context ↗ Gut side effects
- Methylphenidate (Ritalin, Concerta)“I took it this time around and a little while later the whole room was spinning like I was the drunkest I'd ever been” In context ↗ Side effects
- Methylphenidate (Ritalin, Concerta)“taking ADHD medication that I was perfectly fine with before I got CFS makes me crash so badly that I couldn't move for several days after a single pill” In context ↗ Made symptoms worse
- Methylphenidate (Ritalin, Concerta)“now they make me feel like I've drunk an entire bottle of vodka and I'm glued to the floor with the room spinning around me” In context ↗ Side effects
- Compression garments“wearing tight socks makes me want to cut my own feet off” In context ↗ Side effects
- Antibiotics (unspecified)“I briefly went on antibiotics but they just made everything so much worse” In context ↗ Made symptoms worse
- Antibiotics (unspecified)“I was on them for about 4-5 months straight with zero improvement and started slipping into the severe category and forming a tonne of food sensitivities” In context ↗ Made symptoms worse
- Ivabradine“the only problematic side effect was bad headaches ... I stuck with it for a little while but the headaches didn't ease so I stopped taking it” In context ↗ Side effects
Symptoms mentioned
Brain fogGut problemsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseTemperature regulation
Their words about their symptoms
- Post-exertional malaise
had a month a little while ago where I was able to go away for 4 days with only a minor crash afterwards
In context ↗ - Brain fog
already my head is feeling clearer and while I physically can't handle any extra, mentally I feel much more 'with it'
In context ↗ - POTS & dysautonomia
More recently was diagnosed with POTS, HSD, and definitely some weird histaminey things going on
In context ↗ - Mast cell (MCAS) & allergies
high dose vit C and quercetin really helped with histamine issues
In context ↗ - Pain & fibromyalgia
gentle stretching has actually helped my pain a lot
In context ↗ - Gut problems
I had really bad gut dysbiosis and did a lot of rounds of antibiotics and anti parasitic, anti fungal treatments
In context ↗ - Light & noise sensitivity
getting tinted glasses from a specialised optometrist to combat light sensitivity
In context ↗ - Temperature regulation
if I eat or drink something I immediately become either too hot or too cold depending on the temp of what I just ate
In context ↗
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