Long COVID with crippling fatigue and diarrhoea, somewhat better after rehab and Pentasa
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I was infected March 2020 ... and suffer from Long Covid ever since
In context ↗ - At worst: Moderate
every day I have to lay down several times and turn off all senses, incapacitating my every day life greatly
In context ↗ - Now: Somewhat better
Still recovering. But I am better. ... That's that last problem remaining, allbeit the most problematic one.
In context ↗ - Began after: COVID
I was infected March 2020, refused testing or any sort of help for months and suffer from Long Covid ever since
In context ↗
Read from 17 of their posts and comments; links to the 13 this page draws on
Summary
Orchid 61550 was infected with COVID-19 in March 2020 and was ill for over three years, with almost no improvement in the first six months and a bad relapse at four months. A rehab programme brought slow gains, but in mid-2021 extensive walks triggered a further relapse with strong physical and GI symptoms, later linked to allergies. By December 2022 symptoms had dropped one by one until only crippling fatigue remained; Pentasa stopped the constant diarrhoea after six months. By late 2023 the only remaining problem was that a few hours after getting up their perception became so overwhelmed they had to lie down and nap for one to two hours.
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What they tried
What they credit
Also tried
Their words about each treatment
- Steroids · Helped
Steroids seem to supress the symptoms perfectly. The problem is serious sideeffects.
In context ↗ - Ketosis diet · Helped
I have been living in Ketosis for half a year due to my diet and every expert agrees it has helped my condition.
In context ↗ - Rehab and extensive walks · Worse
I started rehab about 4 weeks ago, which has helped ... I would describe it as collapse
- Vitamin B complex · Helped
What made an almost immediate, noticable difference was Vitamin B complex. Small doses, three times a day is important.
In context ↗ - NAD+ · Helped
I started the same thing on Tuesday and together with something else I want to write about in more details, I feel a vast improvement too. ... I know all about NAD+ and I think this is very very relevant.
In context ↗ - Fasting 19:5 · No change
I have been Fasting 19:5 the entire time and I'm still sick 14 months in. Autophagy did not do anything noticable for me imo.
In context ↗ - 2-3 day bone broth fasts · Helped a lot
the two times I fasted 2-3 days on bonebroth I had dramatic improvements
In context ↗ - PPT2 mask · Helped
When I leave the house with my PPT2 mask on, I expereince no issues.
In context ↗ - Pentasa · Helped
I was prescribed a high dosage of Pentasa ... after 6 months of taking it, the issue has stopped finally
In context ↗ - time and patience · Helped
I decided, quite a while ago, to let go of this Sisyphus quest and to give my body time to sort it out itself.
In context ↗
Approaches: Diet · Supplements
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 4 months after onset: the story doesn’t say how ill they were before that. 2 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 |
|---|---|---|---|
| March 2020 | COVID-19 infection; refused testing and help for monthsI was infected March 2020, refused testing or any sort of help for months and suffer from Long Covid ever sinceIn context ↗ | Not stated | |
| 4 months in | really bad relapse, suspected cold on top of Covid symptomsI've had a really bad relapse 4 months in. I suspect it was some kind of cold on top of the Covid-symptoms.In context ↗ | Moderate | |
| September 2020 | started a rehab programme after six months with almost no improvement; small gradual gainsI had almost no improvement for 6 months. I started rehab about 4 weeks ago, which has helpedIn context ↗ | Moderate | |
| November 2020 | vast improvement after starting a compound from another user's postI feel a vast improvement too.In context ↗ | Not stated | |
| July 2021 | collapse after a three hour walk in a nature resort; strong physical symptoms returnedIt culminated in me taking a three hour walk in a nature resort, after which I honestly just folded into bed form tiredness.In context ↗ | Moderate | |
| May 2022 | many symptoms gone after two years; still tiredness, brainfog, diarrhoea and crashesafter two years a lot of the symptoms I experienced are gone. What still plagues me is crippling tiredness, brainfog and diarrhea.In context ↗ | Moderate | Time and spontaneous remission |
| December 2022 | symptoms down to a single one; constant diarrhoea handled after six months of PentasaWhat was once a list of surely 15 concerning things has gone down to a single one.In context ↗ | Moderate | Time and spontaneous remission |
| December 2023 | still recovering but better; needs a 1-2 hour nap a few hours after getting upStill recovering. But I am better. ... a few hours after getting up all my perception gets so overwhelmed that i have to lie down and take a nap for 1-2 hours.In context ↗ | Mild |
Adverse events
- Corticosteroid pulses“Steroids seem to supress the symptoms perfectly. The problem is serious sideeffects.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I still have crashes a day after I had some big stress or tired myself out physically.
In context ↗ - Brain fog
What still plagues me is crippling tiredness, brainfog and diarrhea.
In context ↗ - Gut problems
A big step forward this year was finally handling the constant diarrhea.
In context ↗ - Breathlessness
Yeah I had it to. ... It sent away.
In context ↗ - Light & noise sensitivity
every day I have to lay down several times and turn off all senses
In context ↗ - Mast cell (MCAS) & allergies
pollen season makes my suffering explode significantly
In context ↗
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