Largely bedbound with long COVID for 4.5 years, now much better after phosphatidyl choline
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4.5 years
- Last post
- Jan 2025
In their words
- Condition: Long COVID
I had LC from when I caught Covid in March 2020
In context ↗ - At worst: Severe
I was bedbound for about half that time.
In context ↗ - Now: Much better
I'm up, I'm doing things, my mind is clear, so much swelling has left, my mood and outlook are better.
In context ↗
Read from 29 of their posts and comments; links to the 18 this page draws on
Summary
She fell ill with COVID-19 in March 2020 and spent about 4.5 years largely bedbound with long COVID and ME/CFS, including two bouts of MSIS, a severe inflammatory condition that affected her skin. In October 2024 she added high-dose phosphatidyl choline to her supplements, therapy and self-managed gradual activity, and within days her brain fog cleared and she was getting up and active, later active most days. Joint pain, poor sleep and temperature dysregulation remained and she was not back to her old self.
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What they tried
What they credit
Also tried
Their words about each treatment
- strict naturally gluten free and anti-candida diet · Helped
I basically followed the anti-candida diet for the most part.
In context ↗ - zinc · Helped
I will always fully believe zinc saved my life by keeping it from impacting my lungs too much.
In context ↗ - HPA Adapt · Helped
I take HPA Adapt, methyl multi, the D3+K drops, and the mag malate
In context ↗ - Cortisol Manager · Helped
then at night Cortisol Manager, and it was a true game changer for me
In context ↗ - Methyl Multi · Helped
My favorite so far has been Methyl Multi.
In context ↗ - Bioactive B12 · Helped
Bioactive B12 and Vit D drops with Vit K2
In context ↗ - Vit D drops with Vit K2 · Helped
Vit D drops with Vit K2
In context ↗ - Magnesium malate and other magnesiums · Helped
Magnesium malate taken with D3 + K sublingual drops is also a good supplement that helps in general.
In context ↗ - Iron Complete · Helped
Iron Complete (in a form that doesn't bother the stomach
In context ↗ - vit e · Not said
vit e, vit D3 + K2, Iron Complete
In context ↗ - Garden of Life Women's Daily Care probiotic · Helped
It's honestly the only probiotic I think I've ever actually noticed results with, and I've tried a ton.
In context ↗ - acacia powder prebiotic · Helped
Acacia is a prebiotic; insoluble fiber. It's great and effective
In context ↗ - phosphatidyl choline · Helped a lot
I swear it was the choline that was the thing that pushed me over the edge back into my new normal.
In context ↗ - Re-Regulated audiobook (Anna Runkle) · Helped
I credit her method for handling the mental aspect of all of this.
In context ↗ - therapy · Helped
Therapy has been a huge help.
In context ↗ - pushing through 'surmountable PEM' · Helped
I also had to push myself 'just enough' to begin the long, difficult process of overcoming PEM.
In context ↗ - auricular tVNS (TENS 7000 with ear clips) · Helped
I use a TENS 7000 unit with ear clips
In context ↗ - nicotine patches · Helped
I use the whole patch. I do notice a difference.
In context ↗ - gabapentin · Not said
the only thing I take is gabapentin
In context ↗ - cold showers · Helped
cold showers help a lot with inflammation
In context ↗ - anti-inflammatories · Much worse
I can't do the anti-inflammatories like that for more than a day because they destroy my gut
In context ↗ - cayenne tea · Not said
I also drink a lot of cayenne tea for the inflammation.
In context ↗ - gluten-free diet with smoothies and juicing · Helped
My moods drastically increase when I don't have gluten and do smoothies and juicing.
In context ↗
Approaches: CBT & mindset · Alternative therapies · Diet · Exercise and activity · Supplements · Trauma & somatic work
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 6 months 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| about 6-7 months later | MSIS flare on both arms, swollen and weepingabout 6-7 months later I had an issue with both arms ... both arms were swollen, weepingIn context ↗ | Severe |
| about a year and a half after that | second MSIS flare, on lower legs, leaving sores and scarsThen about a year and a half after that, the same thing happened with my lower legs.In context ↗ | Severe |
| 2020-2024 | bedbound for yearsI was bedbound for about half that time.In context ↗ | Severe |
| 2024-10-26 | woke feeling normal about a week after adding phosphatidyl cholineAfter almost a week, I woke up and felt....normal.In context ↗ | Moderate |
| 2024-11-14 | up and active most days, still in painI still have pain, my joints still hurt. ... But I'm up, I'm doing things, my mind is clearIn context ↗ | Moderate |
Adverse events
- Everyday exercise and activity“Day 4: holy hell, the world fell on every bone in my body. I couldn't move. At all.” In context ↗ Made symptoms worse
- Nicotine patches“Fell asleep really late / early because this dumbass put a new nicotine patch on after my shower” In context ↗ Insomnia from treatment
- “I can't do the anti-inflammatories like that for more than a day because they destroy my gut, which is already destroyed.” In context ↗ Gut side effects
- “Anything more than a day or two and I'm at the emergency room.” In context ↗ ER visit
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I also had to push myself 'just enough' to begin the long, difficult process of overcoming PEM.
In context ↗ - Brain fog
Cleared the brain fog and really just all over helped with so much.
In context ↗ - Sleep problems
some trouble sleeping and still having temperature dysregulation
In context ↗ - Pain & fibromyalgia
I still have pain, my joints still hurt.
In context ↗ - Gut problems
they destroy my gut, which is already destroyed
In context ↗ - Headaches & migraine
though it did cause headaches
In context ↗ - Anxiety & low mood
The absolute misery was to the point of considering taking my l ife.
In context ↗ - Temperature regulation
still having temperature dysregulation
In context ↗
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