Long COVID
Severe → much betterIll 2 years before improving or writingNeeds ongoing treatment
Long COVID with pericarditis and neuropathy, much better after diet and medication
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Dec 2023
In their words
- Condition: Long COVID
my multiple covid induced issues
In context ↗ - At worst: Severe
got out of bed( which has taken up to a few hours to do for months)
In context ↗ - Now: Much better
I'm much better, but I still have multiple symptoms going on.
In context ↗ - Began after: COVID
leg pain from Covid induced neuropathy
Read from 38 of their posts and comments; links to the 20 this page draws on
Summary
Swan 61360 developed long COVID in December 2021 with pericarditis, neuropathy, insomnia and brain fog, worst about seven months in. A strict anti-inflammatory diet calmed the pericarditis; in autumn 2022 Neurontin eased nerve pain and prednisone restored energy, letting her return to work despite hunger side effects. By August 2023 she was about 75%, still limited by neuropathy and memory, and much better by December 2023.
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What they tried
What they credit
Also tried
Adaptogens· Helpedvery strict anti inflammatory diet· HelpedIF· HelpedNeurontin (gabapentin)· HelpedZyrtec· HelpedBenadryl· Helpedextra exercise (walking-yoga)· No changecompression pants· No changeamantadine· Worseindomethacin· WorseTurmeric· Not saidMagnesium· Not saidOTC NSAIDs· Not saidMelatonin· Not saidlow histamine diet· Not saidNad+ in pill form· Not saidMultivitamin· Not saidvit D· Not saidB1· Not saidOmega 3· Not saidQuercetin· Not saidCollagen peptides· Not saidMaca powder· Not saidRed Korean ginseng· Not saidLions mane and reishi tincture· Not said50 billion probiotic· Not saidValerian root· Not saidMCT oil· Not saidholy basil, chamomile and lavender tea, butterfly pea flowers· Not saidholy basil, chamomile and lavender tea, butterfly pea flowers· Not saidholy basil, chamomile and lavender tea, butterfly pea flowers· Not said
Their words about each treatment
- Turmeric · Not said
Things I have tried/am taking: ... Tumeric
In context ↗ - Magnesium · Not said
Things I have tried/am taking: ... Magnesium
In context ↗ - OTC NSAIDs · Not said
Things I have tried/am taking: ... OTC nsaids
In context ↗ - Melatonin · Not said
Things I have tried/am taking: ... Melatonin
In context ↗ - Adaptogens · Helped
adaptogens helped calm me down a bit
In context ↗ - amantadine · Worse
The neurologist gave me amantadine but it added some pretty wicked headaches and nausea, didn't help with the pain at all.
In context ↗ - extra exercise (walking-yoga) · No change
I've tried both extra exercise (as in walking-yoga) and not to see if it makes a difference and it does not seem to.
In context ↗ - compression pants · No change
I bought compression pants. ... No help so far.
In context ↗ - indomethacin · Worse
they had me on indomethacin for that and it destroyed my stomach. I weaned my self off of it.
In context ↗ - very strict anti inflammatory diet · Helped
I was on a very strict anti inflammatory diet for about 5 months ... I'm convinced that's what helped calm my peri down
In context ↗ - low histamine diet · Not said
I've been pretty hard-core with low histamine diet and IF up until recently
In context ↗ - IF · Helped
It seems to help me too but I have so many c induced issues
In context ↗ - prednisone · Helped a lot
I started with a prednisone 6 day taper. Day 5 I woke up and just felt different
In context ↗ - Neurontin (gabapentin) · Helped
The neurotin is helping with the neuropathy and the steroids are feeling like a blessing.
In context ↗ - Zyrtec · Helped
I take a zyrtec in the morning ... Really helps with the histamine intolerance.
In context ↗ - Benadryl · Helped
Really helps with the histamine intolerance. ... So, I stopped the benadryl, no issues so far.
- Nad+ in pill form · Not said
Nad+ in pill form now I was doing the patches but they are pricey.
In context ↗ - Collagen peptides · Not said
Collagen peptides
In context ↗ - Red Korean ginseng · Not said
Red Korean ginseng
In context ↗ - Lions mane and reishi tincture · Not said
Lions mane and reishi tincture
In context ↗ - 50 billion probiotic · Not said
50 billion probiotic
In context ↗ - holy basil, chamomile and lavender tea, butterfly pea flowers · Not said
I make my own holy basil, chamomile and lavender tea bags- also blue matcha aka butterfly pea flowers.
In context ↗
Approaches: Other drugs and medicines
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 7 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 |
|---|---|---|---|
| December 2021 | COVID-19 infection; chest pain and ER visit within a weekFully Vax 10/23 tested positive DecIn context ↗ | Not stated | |
| July 2022 | worst point: hours to get out of bed, no sleep, off workI was about 7 months out when I was at my worst. ... got out of bed( which has taken up to a few hours to do for months) | Severe | |
| September 2022 | Neurontin eased nerve pain; sleep slightly betterI started neurotin this week- which has def helped with the pain but I don't like the buzzy/drunk feeling that comes with it.In context ↗ | Moderate | |
| November 2022 | prednisone restored energy and cleared pericarditis pain; returned to workI'm well enough to head back to work MondayIn context ↗ | Mild | Corticosteroid pulses |
| August 2023 | about 75% back, 60% of energyI'm at about 75% I guess so no complaints progress is progress.In context ↗ | Mild | |
| December 2023 | much better, still neuropathy and manageable pericarditisI'm much better, but I still have multiple symptoms going on.In context ↗ | Mild |
Adverse events
- Amantadine“I was diagnosed about 4 weeks ago w neuropathy and sent to a Neurologist who prescribed amantadine-3 weeks in and the only thing it seems to do is give me random headaches.” In context ↗ Side effects
- Amantadine“The neurologist gave me amantadine but it added some pretty wicked headaches and nausea, didn't help with the pain at all.” In context ↗ Side effects
- Indomethacin (Indocin)“The meds made my stomach bleed so I weaned myself off with a very strict anti inflammatory diet” In context ↗ Gut side effects
- Indomethacin (Indocin)“they had me on indomethacin for that and it destroyed my stomach” In context ↗ Gut side effects
- Gabapentin (Neurontin)“I started neurotin this week- which has def helped with the pain but I don't like the buzzy/drunk feeling that comes with it.” In context ↗ Side effects
- Gabapentin (Neurontin)“I'm 100mg 3x a day. Yesterday, I felt almost "drunk" so my son had to drive me around for errands.” In context ↗ Side effects
- Corticosteroid pulses“So, the past 3 days I've been eating everything in sight and craving all the bad food I haven't ate for so long. ... When does it end? I feel gross.” In context ↗ Side effects
- Corticosteroid pulses“I know it affects the immune system and I caught the flu. It's was not as bad as I expected.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogHair lossHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPain & fibromyalgiaSleep problemsVision problems
Their words about their symptoms
- Neuropathy & tingling
I'm still dealing with neuropathy, and the pericarditis is manageable at this point.
In context ↗ - Pain & fibromyalgia
the heaviness and pain in my legs ( NOT the neuropathies) are still lessened
In context ↗ - Sleep problems
the atrocious insomnia is gone
In context ↗ - Heart symptoms & palpitations
the pericarditis is manageable at this point
In context ↗ - Brain fog
Brain fog is Def clearing but short term memory is still challenging
In context ↗ - Vision problems
The brain fog seems to be subsiding along with the blurry vision too with the pred.
In context ↗ - Hair loss
Extreme fatigue, neuropathy, bi lateral radiculopathy, insomnia, hair loss, eyesight
In context ↗ - Anxiety & low mood
I have never been so low in my life and that's saying alot
In context ↗ - Mast cell (MCAS) & allergies
Really helps with the histamine intolerance.
In context ↗
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