Homebound with long COVID and POTS, now somewhat better after medical protein supplements
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 13 months
- Last post
- Aug 2026
In their words
- Condition: Long COVID
Everything else is just since covid (hauling since august/September 2022).
In context ↗ - At worst: Severe
Still homebound, fever, pots, brainfog. ... Don't need my wheelchair as much anymore, just my cane.
- Now: Somewhat better
I'm in month 13 now and have felt significant improvement. Don't need my wheelchair as much anymore, just my cane.
In context ↗ - Began after: COVID
First infection, aug/Sept 2022.
In context ↗
Read from 16 of their posts and comments; links to the 12 this page draws on
Summary
A Dutch woman who had recovered from 15 years of PTSD caught COVID in August/September 2022 and became homebound with fever, POTS, brain fog and used a wheelchair. A dietitian found she was eating far too little and started medical protein supplements in month 11; by month 13 she felt significant improvement, needed the wheelchair less and used a cane. Better nutrition also eased muscle pain and psyllium helped her gut.
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What they tried
What they credit
Also tried
Their words about each treatment
- vagal nerve stimulation · Helped
For me, working on with the nervous system is starting to relieve symptoms such as fever, energy, PEM, heart issues, (head) aches, etc.
In context ↗ - another shot · No change
so i went for another shot. It didnt do anything for me, but at least i feel like i am trying everything.
In context ↗ - antidepressants · Helped
Depression and anxiety are manageable since we upped my antidepressants a bit ( was almost off them)
In context ↗ - lorazepam · Helped
Also the occasional lorazepam helps:)
In context ↗ - medical supplemental food (medische bijvoeding) · Helped a lot
She started me on medical supplemental food ( in Dutch: medische bijvoeding) that is mostly the enzymes that build proteïn. ... I'm in month 13 now and have felt significant improvement.
In context ↗ - psyllium · Helped
For me psyllium helps to regulate the diarrhea/constipation. One poop a day! And the nausea also seems a lot less
In context ↗ - MCAS diet · Helped
This way I don't get super frustrated when a MCAS diet does help but doesn't solve all my issues.
In context ↗ - melatonin · Helped
The TV show and melatonin + sleep study did!
In context ↗ - ADHD meds · Helped
The meds make me feel ( in general, not now cuz brainfog) like i can finally finish my own thoughts and everything in my head is organized/tidy/easily accessable.
In context ↗
Approaches: Vagus nerve stimulation
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 chart starts 10 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| 2022-08/09 | first COVID infectionFirst infection, aug/Sept 2022.In context ↗ | Not stated |
| 2023-06-03 | homebound with fever, POTS and brain fogStill homebound, fever, pots, brainfog.In context ↗ | Severe |
| 2023-10-16 | felt significant improvement, less wheelchair, uses a caneI'm in month 13 now and have felt significant improvement. Don't need my wheelchair as much anymore, just my cane.In context ↗ | Moderate |
| 2024-05-07 | better nutrition, less muscle painAlso felt a bit less shitty with less muscle pains.In context ↗ | Moderate |
Adverse events
- Vagus nerve stimulation“Its really painfull to do, but it does help.” In context ↗ Side effects
- COVID vaccination as treatment“The vaccines also messed with my cycle, but that would settle itself after 3 months or so.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
starting to relieve symptoms such as fever, energy, PEM, heart issues
In context ↗ - Brain fog
Still homebound, fever, pots, brainfog.
In context ↗ - Mast cell (MCAS) & allergies
my upset stomach is probably a combination of MCAS and my connective tissue not keeping it in place
In context ↗ - Sleep problems
the meds help with A LOT, but not with sleeping
In context ↗ - Pain & fibromyalgia
Also felt a bit less shitty with less muscle pains.
In context ↗ - Headaches & migraine
symptoms such as fever, energy, PEM, heart issues, (head) aches
In context ↗ - Gut problems
For me psyllium helps to regulate the diarrhea/constipation.
In context ↗ - Heart symptoms & palpitations
symptoms such as fever, energy, PEM, heart issues
In context ↗ - Anxiety & low mood
Depression and anxiety are manageable since we upped my antidepressants a bit
In context ↗
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