Severe long COVID improved with pacing and diet, then relapsed worse
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I had disabling long covid after having been infected three times, and each infection had made the long covid worse.
In context ↗ - At worst: Severe
All my symptoms are back to 9 or 10, including a few new ones, and they have held there.
In context ↗ - Now: Relapsed
I am worse off today than I was in January. All my symptoms are back to 9 or 10, including a few new ones, and they have held there.
In context ↗ - Began after: COVID
I had disabling long covid after having been infected three times, and each infection had made the long covid worse.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Bluebell 33699 had long COVID after three COVID infections, each of which made it worse. By January 2023 all symptoms were severe; through diet, medicinal plants and pacing they came down to 5s and 6s by August. Six days in a psychiatric ward without a BiPAP machine or treatment, plus forced exertion, caused a collapse, and by December 2023 they were worse than in January, with all symptoms back at 9 or 10.
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What they tried
What they credit
Also tried
Their words about each treatment
- medicinal plants · Helped
through diet, medicinal plants and foods and pacing, I got to a point in August where my symtpoms averaged down to 5s and 6s
In context ↗ - supplements · Helped
the medicinal plants, foods and supplements I use to relieve my long covid symptoms
In context ↗ - bipap machine · Not said
my bipap machine - which keeps my brain fed with oxygen at night
In context ↗ - sedatives · Not said
So I "got with their program", took their pills, and became "agreeable"
In context ↗
Approaches: Alternative therapies · Pacing
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. 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 |
|---|---|---|---|
| — | long COVID after three COVID infectionsI had disabling long covid after having been infected three times, and each infection had made the long covid worse.In context ↗ | Not stated | |
| January 2023 | all symptoms severe, 9s or 10sback in Jan 2023 all my symtpoms were severe.. 9s or 10sIn context ↗ | Severe | |
| August 2023 | symptoms down to 5s and 6s, long COVID managed wellthrough diet, medicinal plants and foods and pacing, I got to a point in August where my symtpoms averaged down to 5s and 6sIn context ↗ | Mild | Pacing and the energy envelope |
| mid-August 2023 | six days locked in a psychiatric ward with forced exertion and no BiPAPMy time there of six days of non-stop, forced exertion and no medical treatment and no bipap machine resulted in a catastrophic symptoms collapse for me.In context ↗ | Severe | |
| December 2023 | worse than January, all symptoms back at 9 or 10 and holdingI am worse off today than I was in January. All my symptoms are back to 9 or 10, including a few new ones, and they have held there.In context ↗ | Severe |
Adverse events
- Herbal remedies (unspecified)“the medicinal plants, foods and supplements I use ... were all withheld from me ... racked with head to toe nerve pain and splitting headaches” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
post-exertional symtpom exacerbation is probably my most vicious symptom
In context ↗ - Brain fog
up there with brain fog and fatigue
In context ↗ - Headaches & migraine
racked with head to toe nerve pain and splitting headaches
In context ↗
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