28 years ill with ME/CFS after EBV, now somewhat better after antibiotics
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 28 years
- Last post
- Oct 2021
In their words
- Condition: ME/CFS
ive had it for 28 yrs
In context ↗ - At worst: Severe
whenever i stop them, within 5 weeks, i am bedridden and at death's door again.
In context ↗ - Now: Somewhat better
not that i am well by any means, but i am making tiny dents.
In context ↗ - Began after: glandular fever or EBV
I became ill after EBV
In context ↗
Read from 17 of their posts and comments; links to the 9 this page draws on
Summary
Became ill after EBV and was sick for 28 years, travelling worldwide to see doctors and taking antivirals, antiretrovirals, antifungals and antibiotics; only years of antibiotics helped. A C3-C6 neck fusion in Asia left them worse with permanent new pain. Do-it-yourself faecal transplants produced tiny improvements and allowed them to stop seven years of medication, though they remained very sick.
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What they tried
What they credit
Also tried
Their words about each treatment
- every antiviral · No change
i have taken every antiviral under the sun by now with little to no improvement.
In context ↗ - antiretrovirals · No change
I have taken antivirals, antiretrovirals antifungals and antibiotics. of all kinds.
In context ↗ - antibiotics · Helped
The only thing that helped me was yrs and yrs of antibiotics.
In context ↗ - samento · Worse
i had almost the exact same reaction to samento.
In context ↗ - c3-c6 fusion · Worse
i went and had c3-c6 fusion. it didnt work and now i am worse off than before with pain i never had before.
In context ↗ - fecal transplants · Helped
i think i am very very slowly climbing out with fecal transplants
In context ↗
Approaches: Antibiotics
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. The first step with a time is 27 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | became ill after EBVI became ill after EBVIn context ↗ | Not stated | |
| — | bedridden and near death within weeks of stopping antibioticswhenever i stop them, within 5 weeks, i am bedridden and at death's door againIn context ↗ | Severe | |
| at 27 yrs sick | C3-C6 neck fusion in Asia left permanent new paini went and had c3-c6 fusion. it didnt work and now i am worse off than before with pain i never had beforeIn context ↗ | Severe | |
| 2021-09 | stopped seven years of medication after several DIY faecal transplantsfrom doing several FMT's I was able to stop the meds I have been on for 7 yrsIn context ↗ | Severe | Faecal transplant (FMT) |
| 2021-10-10 | still very sick, making tiny improvements with FMTi am still v sick. after this long, its like a drop in a v large bucket. but i know i am on the right track now cuz i was able to stop my meds and did not become bedriddenIn context ↗ | Severe | Faecal transplant (FMT) |
Adverse events
- Cat's claw“i had almost the exact same reaction to samento” In context ↗ Made symptoms worse
- Craniocervical fusion / tethered cord“i went and had c3-c6 fusion. it didnt work and now i am worse off than before with pain i never had before” In context ↗ Made symptoms worse
- Craniocervical fusion / tethered cord“so now i am even more depressed than before” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Anxiety & low mood
so now i am even more depressed than before
In context ↗ - Breathlessness
it gets so bad, i sometimes even have trouble breathing
In context ↗ - Pain & fibromyalgia
now i am worse off than before with pain i never had before
In context ↗
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