Bedbound with long COVID, now much better after Madopar
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6.5 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
first infection 2020-02
In context ↗ - At worst: Severe
I went from bedbound/laying down for 20 hours a day
In context ↗ - Now: Much better
I went from bedbound/laying down for 20 hours a day to to feeling the best I have in 6,5 years (maybe like 60/70% pre covid). For now I have my life back.
In context ↗ - Began after: COVID
first infection 2020-02
In context ↗
Summary
Spruce 92265 fell ill with COVID-19 in February 2020 and became bedbound, lying down 20 hours a day, with POTS, PEM, brain fog, joint pain and a raised heart rate. HELP apheresis gave temporary relief of two to three months, with benefits gone after a June reinfection. After 6.5 years the Parkinson's drug Madopar lifted them to about 60-70% of pre-COVID function, with POTS and PEM nearly gone; treatments cost about €30,000.
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What they tried
Also tried
Their words about each treatment
- HELP apheresis · Helped
for a couple of months life is a lot easier (no heartburn, less joint pain, improved bloodflow, less brainfog, lower heartrate, more energy)
In context ↗ - bloodthinners (clopidogrel and aspirin) · Not said
I do (clopidogrel and aspirin), but still new microclots.
In context ↗ - HBOT · Not said
spending € 30.000,- on treatments (HBOT, HELP apheresis, LDN, Mestinon, Maraviroc, bloodthinners and so on)
In context ↗ - Madopar (levodopa/benserazide) · Helped a lot
For now I have my life back. Pots and pem are as good as gone
In context ↗
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 2 years after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2020-02 | COVID-19 infection, start of long COVIDfirst infection 2020-02In context ↗ | Not stated | |
| Feb/early March 2022 | four HELP apheresis sessions, major but temporary improvementI did 4 sessions in Feb/early March 2022 (major improvement, but no full recovery)In context ↗ | Moderate | HELP apheresis / plasmapheresis |
| end of May 2022 | worsening after the apheresis benefit wore offimproved a bit again after worsening end of MayIn context ↗ | Not stated | |
| end of June 2022 | two more apheresis sessions, improved a bit again2 more end of June 2022 (improved a bit again after worsening end of May)In context ↗ | Moderate | HELP apheresis / plasmapheresis |
| September 2023 | three apheresis sessions after reinfection, temporary improvementIn September 2023 I did 3 more (after re-infection Feb 2023), again a temporary improvement.In context ↗ | Moderate | HELP apheresis / plasmapheresis |
| February 2024 | two apheresis sessions, the same temporary improvementThe same in February 2024 (2 sessions).In context ↗ | Moderate | HELP apheresis / plasmapheresis |
| June 2024 | reinfection; apheresis benefits gone againBut after another re-infection in June (but worsening started weeks before) benefits are gone again.In context ↗ | Not stated | |
| — | bedbound, lying down 20 hours a dayI went from bedbound/laying down for 20 hours a dayIn context ↗ | Severe | |
| 2026-08-29 | after 8 weeks of Madopar, best in 6.5 years, about 60-70% of pre-COVID functionI went from bedbound/laying down for 20 hours a day to to feeling the best I have in 6,5 years (maybe like 60/70% pre covid).In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Pots and pem are as good as gone
In context ↗ - Pain & fibromyalgia
less joint pain
In context ↗ - Heart symptoms & palpitations
lower heartrate
In context ↗