Long COVID
Severe → somewhat betterNeeds ongoing treatment
Long COVID at its worst, unable to look at screens, now somewhat better after Pfizer shots
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jan 2023
In their words
- Condition: Long COVID
except the long Covid brain fog, adrenaline storms and deconditioning.
In context ↗ - At worst: Severe
I couldn’t look at screens or follow a conversation or remember my kids’ names and I was either sleeping or hiding or screaming
In context ↗ - Now: Somewhat better
Functional is better. ... Dysautonomia remains.
- Began after: COVID
Sick since spring of 2020. ... Covid and mirtazapine pushed me into diabetes.
Read from 44 of their posts and comments; links to the 28 this page draws on
Summary
Heron 46893 fell ill with long COVID in spring 2020 and was at her lowest in spring 2021, unable to look at screens or remember her children's names. The first two Pfizer shots brought months of improvement, and a grain-free low-carb diet plus fasting later reversed her neuropathy and blood-sugar problems. Pushing herself caused a relapse, and dysautonomia, brain fog and headaches persisted into 2022.
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What they tried
What they credit
Pfizer vaccine· Helped a lot · main · wore offketo / low carb, grain free· Helped a lot · mainmagnesium glycinate, magnesium citrate (CALM), calcium, zinc, copper· Helpedmagnesium glycinate, magnesium citrate (CALM), calcium, zinc, copper· Helpedmagnesium glycinate, magnesium citrate (CALM), calcium, zinc, copper· Helpedmagnesium glycinate, magnesium citrate (CALM), calcium, zinc, copper· Helpedkeeping activity below a heart rate of 130· Helpedrestorative yoga and breathwork· Helpedbeef organ capsules· Helped
Also tried
extended fasting (past 36 hours)· Helped · wore offMirtazapine· Helpedsalt and Nu Salt electrolyte water· Helpedb1 (thiamine)· HelpedCoq10· Helpedmelatonin· Helpedberberine· HelpedKlonopin, Ativan· Helped · wore offKlonopin, Ativan· Helped · wore offadderall· Helped · wore offvinegar· Helpedexercise / pushing through· WorseDoxylamine· Worseambian· WorseCombined birth control (pill, patch or ring)· Worsestretching time between meals· Not saidd3· Not saidlemon balm and passionflower· Not saidlemon balm and passionflower· Not saidmulti vitamins· Not saidashwaganda· Not saidmethylated b vitamins· Not saidnettle infusion· Not saidred clover· Not saidmicronized progesterone, birth control pill and ring· Not saidmicronized progesterone, birth control pill and ring· Not said
Their words about each treatment
- Pfizer vaccine · Helped a lot
First Pfizer made me flulike for 2 days and then over a few weeks my long term issues improved so much.
In context ↗ - keto / low carb, grain free · Helped a lot
keto absolutely is the best thing for me.
In context ↗ - extended fasting (past 36 hours) · Helped
After every fast past 36 ish hours many symptoms improved. (Albeit temporarily)
In context ↗ - stretching time between meals · Not said
Going 4 hours between foods was impossible. But eventually I stretched from 3 hours to 48 to 67.
In context ↗ - Mirtazapine · Helped
Mirtazapine helped me sleep, which helped my brain fog.
In context ↗ - exercise / pushing through · Worse
I tried to excercise my way out of this. I made it worse.
In context ↗ - salt and Nu Salt electrolyte water · Helped
Without enough electrolytes my fingers and toes feel hot and prickly. ... Even so I still have tingles. But no twitching!
In context ↗ - magnesium glycinate, magnesium citrate (CALM), calcium, zinc, copper · Helped
I too feel improvement when I’m on top of mag, zinc, copper, cal balance.
In context ↗ - d3 · Not said
Also at night: calcium, d3, k, berberine
In context ↗ - b1 (thiamine) · Helped
I take my b1 at night (for my burning nerves)
In context ↗ - Coq10 · Helped
Coq10. I slacked on this and the freezing cold toes came back.
In context ↗ - melatonin · Helped
Now though, it helps with more than sleep.
In context ↗ - berberine · Helped
berberine (probably helps my gut flora and does help my glucose regulation)
In context ↗ - Klonopin, Ativan · Helped
Oddly I was in a brain meltdown phase too and took klonopin until I ran out. Weird deep butt stuff had gone away.
In context ↗ - Doxylamine · Worse
Doxylamine works for a few hours but I’m an angry disconnected person the next few days.
In context ↗ - ambian · Worse
Same for ambian.
In context ↗ - keeping activity below a heart rate of 130 · Helped
If I kept my activity down so my heart rate stayed below 130 I could function later.
In context ↗ - restorative yoga and breathwork · Helped
I had to switch from intensity to form. Or rather physical intensity to mental focus. So restorative deep stretch yoga.
In context ↗ - lemon balm and passionflower · Not said
lemon balm and passionflower
In context ↗ - multi vitamins · Not said
In the am I take 3 Whole Foods multi vitamins
In context ↗ - methylated b vitamins · Not said
methylated b vitamins
In context ↗ - nettle infusion · Not said
I drink nettle infusion most days (the original quercetin).
In context ↗ - red clover · Not said
Sometimes switch to red clover when around my period.
In context ↗ - beef organ capsules · Helped
Put the nasty powder in capsules. ... Really does help.
In context ↗ - micronized progesterone, birth control pill and ring · Not said
I have no idea if it helps. The first month it seemed, maybe, to help me sleep.
In context ↗ - adderall · Helped
Last month I was trialing adderall. And encouraged by how calm and clear I felt, but it stopped working as soon as I ovulated.
In context ↗ - vinegar · Helped
If my tummy is feeling backwards I’ll drink some vinegar
In context ↗ - Combined birth control (pill, patch or ring) · Worse
Oral birth control and the ring have all sent me into suicidal holes within days.
In context ↗
Approaches: Diet · Mind-body practices · Pacing · Supplements · Vaccination
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 12 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| spring 2020 | COVID-19 infection; long COVID beginsSick since spring of 2020.In context ↗ | Not stated | |
| spring 2021 | lowest point: could not look at screens, follow a conversation or remember her children's namesFrom the low point of spring 2021. Where I couldn’t look at screens or follow a conversation or remember my kids’ names and I was either sleeping or hiding or screamingIn context ↗ | Severe | |
| October 2021 | relapsed after pushing herself with exercisethen I pushed myself and I’m back in the struggle.In context ↗ | Moderate | |
| February 2022 | blood sugar, A1c and neuropathy resolved on long-term keto and fasting; dysautonomia remainedNo auto antibodies. A1c 5.2. Down 50 pounds. ... Neuropathy gone. Dysautonomia remains.In context ↗ | Moderate | Keto and low-carb diets |
| 2023-01-03 | fourth vaccine caused only one day in bed and moderate improvement; still limited by dysautonomia, brain fog and headaches4th vax, only in bed for one day, with moderate improvements.In context ↗ | Moderate | COVID vaccination as treatment |
Adverse events
- COVID vaccination as treatment“1 was two days of bad flulike crap” In context ↗ Side effects
- COVID vaccination as treatment“The second shot was horrid for 4 days and then a few weeks of stronger exhaustion and mild fevers. ... 2nd was 4 days of thinking I might die. Crushing bone pain.” Side effects
- COVID vaccination as treatment“4th vax, only in bed for one day, with moderate improvements.” In context ↗ Side effects
- Everyday exercise and activity“I tried to excercise my way out of this. I made it worse.” In context ↗ Made symptoms worse
- Mirtazapine (Remeron)“Covid and mirtazapine pushed me into diabetes.” In context ↗ Side effects
- Mirtazapine (Remeron)“Made me fat.” In context ↗ Side effects
- Mirtazapine (Remeron)“it made me ravenous” In context ↗ Side effects
- Doxylamine (Unisom)“Doxylamine works for a few hours but I’m an angry disconnected person the next few days.” In context ↗ Mood or psychiatric effects
- Zolpidem (Ambien)“Same for ambian.” In context ↗ Mood or psychiatric effects
- Combined birth control (pill, patch or ring)“Oral birth control and the ring have all sent me into suicidal holes within days.” In context ↗ Suicidal thoughts or attempt
- Extended water fasting (3+ days)“Fasting for more than 36 hours raises my cortisol too much. So I don’t do that right now.” In context ↗ Side effects
Symptoms mentioned
Brain fogGut problemsHeadaches & migraineNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
If I kept my activity down so my heart rate stayed below 130 I could function later. Before I learned this I was wrecked the next day.
In context ↗ - Brain fog
I can read now. But, obviously, my thoughts are still scattered.
In context ↗ - POTS & dysautonomia
Neuropathy gone. Dysautonomia remains.
In context ↗ - Sleep problems
Mirtazapine helped me sleep, which helped my brain fog.
In context ↗ - Pain & fibromyalgia
Fasting regained some mobility and reduced pain.
In context ↗ - Headaches & migraine
Currently have very dry eyes and headaches that aren’t connected to my extremely wacky blood pressure and pulse.
In context ↗ - Neuropathy & tingling
Toes and hands that feel prickly or worse (much improved btw)
In context ↗ - Temperature regulation
I slacked on this and the freezing cold toes came back.
In context ↗ - Gut problems
Since resolving lifetime gerd with grain free low carb hot sauces and fatty food rarely bother me.
In context ↗ - Vision problems
Brain fog and visual disturbances got much better.
In context ↗
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