Bedridden with long COVID and severe MCAS, now much better on ketogenic diet
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I treated long COVID exactly like my toxic mold exposure
In context ↗ - At worst: Severe
at my most sick when I was bedridden
In context ↗ - Now: Much better
I still have a ton of issues but I live a functional life, work three jobs, have an amazing partner and can travel.
In context ↗ - Began after: mould or toxic exposure
my MCAS came from toxic mold and was worsened by long COVID as far as I can tell
Read from 12 of their posts and comments; links to the 8 this page draws on
Summary
At their worst they were bedridden and had severe MCAS, neuropathy and autoimmune problems, and recovered from POTS with midodrine, fludrocortisone and a low-carb diet. They credited a ketogenic diet for a huge difference in their chronic fatigue and brain fog, plus thyroid treatment and supplements. By 2024 they worked three jobs and could travel, though many issues remained and mold re-exposures restarted the cycle; their first COVID vaccine left their lower body numb for most of a week.
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What they tried
What they credit
Also tried
Their words about each treatment
- Ketogenic diet · Helped a lot
Ketogenic diet made a HUGE difference ... But getting my carb intake to a ketosis level was a game changer.
In context ↗ - AIP and low-amylose restrictions · Helped
They don’t do anything for brain fog for me. ... For me, I need to be on a pretty severe diet to knock out persistent inflammation
- Ritalin / Concerta · Helped
Ritalin / Concerta for ADHD
In context ↗ - Pregnenolone/DHEA combo · Helped
Pregnenolone/DHEA combo
In context ↗ - Cholestyramine binder · Helped
Cholestyramine binder
In context ↗ - Thyroid treatment with both T3 and T4 supplements · Helped
Thyroid treatment with both T3 and T4 supplements
In context ↗ - Vitamin D3 · Helped
Vitamin D3 at 5000 IUs
In context ↗ - Methyl-Life · Helped
Methyl-Life 15 mg
In context ↗ - midodrine · Helped a lot
I was prescribed these two medications together to raise my blood pressure and that allowed me to recover from POTS
In context ↗ - Paxlovid · Helped
I’ve also found Paxlovid whacks recent strains out for me fast
In context ↗ - getting rid of belongings and moving to a new place · Not said
I had to get rid of almost everything I ever owned and move to a new place due to mold.
In context ↗ - movement · Helped
And movement works for my neuropathy because it brings oxygen to the nerves.
In context ↗ - brain retraining / acceptance · Worse
Attempting acceptance more often leads to isolation and regressing in recovery for me.
In context ↗ - COVID vaccination as treatment · Not said
I had an insanely bad reaction to the first covid vaccine. I also did not die a horrible death from COVID. I already had MCAS so it did not surprise me.
In context ↗
Approaches: POTS medication · Diet · Sex hormones · Stimulants · Supplements · Thyroid hormones
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| — | at their sickest, bedridden and debilitated by severe MCASat my most sick when I was bedriddenIn context ↗ |
| 2021-02-10 | much better on chronic fatigue and brain fog after ketogenic diet and other treatmentsKetogenic diet made a HUGE differenceIn context ↗ |
| 2024-05-13 | living a functional life, working three jobs and travelling, though issues remainI live a functional life, work three jobs, have an amazing partner and can travelIn context ↗ |
Adverse events
- COVID vaccination as treatment“I had an insanely bad reaction to the first covid vaccine. I also did not die a horrible death from COVID. I already had MCAS so it did not surprise me.” In context ↗ Autoimmune or inflammatory flare
- COVID vaccination as treatment“When I got the first COVID vaccine, my whole lower body went numb for most of a week.” In context ↗ Nerve pain
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
reacting to everything in my environment with numbness and pain and tingling and weird sensations
In context ↗ - Mast cell (MCAS) & allergies
I had severe MCAS to the point where I was absolutely debilitated
In context ↗ - Brain fog
between treatment for ADHD and treatment for chronic fatigue and brain fog, I am doing WAY WAY better on both fronts
In context ↗ - POTS & dysautonomia
I was prescribed these two medications together to raise my blood pressure and that allowed me to recover from POTS
In context ↗ - Pain & fibromyalgia
numbness and pain and tingling and weird sensations
In context ↗ - Sleep problems
sleep and distressing (the last two are near impossible to achieve though)
In context ↗
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