Housebound with long COVID, improved then relapsed; less ill after HELP apheresis and LDN
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 19 months
- Last post
- Aug 2023
In their words
- Condition: Long COVID
13 months. F (31). Main symptoms PEM, elevated heart rate but not POTS according to doc, fatigue
In context ↗ - At worst: Severe
still in bed 23h a day most days
In context ↗ - Now: Relapsed
Yes, i relapsed after a year, but starting to feel better after 7 months (just like the first time).
In context ↗ - Began after: COVID
13 months. F (31).
Read from 11 of their posts and comments; links to the 10 this page draws on
Summary
Housebound with long COVID, she had PEM, a raised heart rate, fatigue and early brain fog that cleared after six or seven months. Supplements didn't clearly help, lactoferrin was just started and iron correction did nothing; at 18 months she was still in bed 23 hours a day most days, and a relapse after a year was improving after seven months. Six rounds of HELP apheresis in Switzerland and low-dose naltrexone for pain left her less ill but still mostly housebound.
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What they tried
What they credit
Also tried
Their words about each treatment
- taking a lot of breaks · Helped
I think what helped me was being able to take a lot of breaks and still having to do difficult tasks things on better days
In context ↗ - time and rest · Helped
i think it was just time and rest honestly
In context ↗ - supplements · Not said
I did try a lot of supplements and I dont know what helped in the end
In context ↗ - treating my iron deficiency · No change
Treatet my iron deficiency, that also did nothing for me.
In context ↗ - acid-base approach · No change
I tried it for the last couple weeks and it did nothing for me.
In context ↗ - lactoferrin · No change
Tried 1800mg for a month (started slowly) but it didnt do anything for me.
In context ↗ - help apheresis · Helped
I just finished 6 rounds of help apheresis in switzerland with a great doctor. I feel less ill and experience less pain
In context ↗ - LDN · Helped a lot
This has been a game changer for my pain.
In context ↗ - cutting any diary product · Helped
Puls cutting any diary product for some reason. Still mostly house bound but with less pain
In context ↗
Approaches: Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| January 2022 | long COVID onset; went from working to houseboundi went from being able to work back to housebound ... Same happened when i first got sick.In context ↗ | Moderate | |
| mid 2022 | brain fog and neurological problems clearedIt went away after 6 or 7 months when my neurological issues went away. ... I think what helped me was being able to take a lot of breaksIn context ↗ | Moderate | Pacing and the energy envelope |
| early 2023 | relapsed after a year; iron dropped from 140 to 17Yes, i relapsed after a yearIn context ↗ | Moderate | |
| spring 2023 | housebound most days and in bed 23 hours a dayPEM, fatigue and heart issues still have me house bound most days ... still in bed 23h a day most days | Severe | |
| May 2023 | after six rounds of HELP apheresis, less ill and less pain, more good daysI feel less ill and experience less pain ... i have more good days where i can leave the bed 2-3h without a crashIn context ↗ | Severe | HELP apheresis / plasmapheresis |
| July 2023 | low-dose naltrexone eased pain; still mostly houseboundThis has been a game changer for my pain. ... Still mostly house bound but with less painIn context ↗ | Moderate | Low-dose naltrexone |
| August 2023 | starting to feel better after a seven-month relapsestarting to feel better after 7 months (just like the first time)In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM, fatigue and heart issues still have me house bound most days
In context ↗ - Heart symptoms & palpitations
elevated heart rate but not POTS according to doc
In context ↗ - Brain fog
It went away after 6 or 7 months when my neurological issues went away.
In context ↗ - Pain & fibromyalgia
This has been a game changer for my pain.
In context ↗ - Temperature regulation
for 6 weeks I was unable to feel the cold (unless it was a pain sensation)
In context ↗ - Sleep problems
I do sleep more
In context ↗
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