Severe ME/CFS for 23 years, 10 days free of it in hospital, then ill again
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 23 years
- Last post
- Oct 2023
In their words
- Condition: ME/CFS
After 23 years of me/cfs, I thought for sure this was my miracle cure.
In context ↗ - At worst: Severe
after 23 years of severe illness
In context ↗ - Now: Relapsed
I endure weakly day to day.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
A person ill with severe ME/CFS for 23 years was hospitalised with COVID for three weeks and given remdesivir, IV antibiotics, steroids, cough syrup and dextromethorphan. One morning the ME/CFS was gone; for 10 days they could cook, shop, drive and do laundry, with no PEM. The remission ended after 10 days and they were ill again, still searching for what had helped.
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What they tried
What they credit
Also tried
Their words about each treatment
- Remdesivir anti viral iv · Helped
plus the steroids, the anti viral infusion
In context ↗ - antibiotics iv · Not said
even antibiotics iv supposedly for inflammation
In context ↗ - injections for clotting issues · Not said
poked with injections of all
In context ↗ - cough syrup (dextromethorphan) · Helped a lot
honestly think it had more to do with mucinex and dextromethorphan
In context ↗ - Thessalon pearles · Not said
Thessalon pearles which work on cough center in brain
In context ↗ - Oxygen · Not said
Oxygen as well 24/7 several months
In context ↗
Approaches: Antivirals · Other drugs and medicines
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 23 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 |
|---|---|---|
| onset | ME/CFS onset; two decades of missed family occasionsAfter two decades of missing birthdays, Christmas mornings, everything important to me and my kidsIn context ↗ | Not stated |
| — | severe ME/CFS for 23 years before the COVID hospitalisationafter 23 years of severe illnessIn context ↗ | Severe |
| post Covid | ME/CFS vanished for 10 days; could wash dishes, do laundry, drive and shopI woke up one day and the cfs was JUST gone. I felt NORMAL.In context ↗ | Near normal |
| 10 days later | 10-day remission endedDid some beautiful things with my family knowing it was going to likely disappear again. It did.In context ↗ | Severe |
| 2023-10-05 | back to severe ME/CFS, still searching for what helpedI am weary of fighting daily. I want to give up many times. I endure weakly day to day.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Breathlessness
mucinex to help my lungs clear everything. Oxygen as well 24/7 several months.
In context ↗ - Temperature regulation
the high fevers that must have knocked down a lot of nasty infections we always carry
In context ↗
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