Long COVID
Moderate → much betterIll 4 years before improving or writingNeeds ongoing treatment
Long COVID, unable to drive for a year, now driving and more functional with nattokinase
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Mar 2024
In their words
- Condition: Long COVID
Longahuling since March 2020.
In context ↗ - At worst: Moderate
I'm also living a very vegetative life, walking for more than 10 mins is a no go, and a hill will wind me instantly.
In context ↗ - Now: Much better
accepted LC and moving on with life. Heavily reliant on meds to keep me functional
In context ↗ - Began after: COVID
Got sick in March 2020.
Read from 25 of their posts and comments; links to the 16 this page draws on
Summary
Puffin 41509 caught COVID in March 2020 and for a year was largely limited to short walks and unable to drive, with insomnia, brain fog, tinnitus, head pressure and tachycardia, improving slowly from about six months in. A first Pfizer dose in June 2021 triggered a relapse that sent her to hospital. From January 2023 daily nattokinase, on top of existing antihistamines and sleep medication, left her driving again and more functional, though still reliant on medication, and a 2023 reinfection set her back.
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What they tried
What they credit
Also tried
antibiotics· Helpedherbal sleep aid / valerian root tablet· Helpedsuper green powder mix· Helpedpropanolol· Helpedamytriptaline· HelpedNero rest sleep aid (Utmost Me / The Restored)· Helpedvaping 12mg of nicotine· No changesleeping tablets· No changePfizer vaccine and bivalent booster· Worsevit D· Not saidapple cider pills· Not said
Their words about each treatment
- antibiotics · Helped
Had an infection to boot. Cleared the infection with antibiotics.
In context ↗ - vaping 12mg of nicotine · No change
I've been vaping 12mg of nicotine throughout all of this, it hadn't eased or helped anything aside from keeping me somewhat sane
In context ↗ - sleeping tablets · No change
I've got sleeping tablets that have no affect as my brain just apparently decides nope. ... Sleeping tablets don't work at all.
- fexofenadine / drowsy anti histamine · Helped
I'm taking 180mg fexofenadine every morning, this is possibly my hail Mary
In context ↗ - herbal sleep aid / valerian root tablet · Helped
Also a drowsy anti histamine before bed and a herbal sleep aid ... 2) valerian root tablet
- Pfizer vaccine and bivalent booster · Worse
I felt like I was mostly recovered until my 1st shot of Pfizer.
In context ↗ - vit D · Not said
this is possibly my hail Mary + vit D and apple cider pills x2
In context ↗ - apple cider pills · Not said
vit D and apple cider pills x2
In context ↗ - super green powder mix · Helped
I still do not feek hunger so my diet is not great, hence introduced the super greens, i think it helped.
In context ↗ - propanolol · Helped
ive started taking propanolol before bed along with amytriptaline. Sleep like a corpse now :)
In context ↗ - Nero rest sleep aid (Utmost Me / The Restored) · Helped
I also take Nero rest sleep aid to silence my brain which is constantly in overdrive.
In context ↗ - Nattokinase · Helped a lot
Started Nattokinase last weekend. Head pressure, ear stuffiness, dizziness.. all immensely better after a few days.
In context ↗ - Horbaach electrolytes · Helped
I do make sure to take excellent high dose electrolytes on a daily basis, maybe this helped this and a bunch of other symptoms.
In context ↗
Approaches: H1 antihistamines · POTS medication · Anticoagulants
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. 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, long haul beginsLongahuling since March 2020.In context ↗ | Moderate | |
| about 6 months in (Sept 2020) | first sign of recoveryTook me just over 6 months to start feeling recovery.In context ↗ | Moderate | |
| 2020-12-05 | better than in May but still living a vegetative lifeI'm also living a very vegetative life, walking for more than 10 mins is a no go, and a hill will wind me instantly.In context ↗ | Moderate | |
| 2021-06-13 | nearly back to something like normalityI was basically nearly back to something resembling normality aside from tinnitus, some inflammation and things going blue once in a whileIn context ↗ | Mild | |
| 2021-07-20 | functional again on antihistamines, sleep meds and greens powderNow am basically functional with whatever I'm taking supplement wise. Nowhere near 100 pervent but this is fine ish.In context ↗ | Mild | Fexofenadine (Allegra) |
| 2022-12-29 | working and functioning on medicationI also have an insanely demanding and stressful job that I've somehow had 2 promotions in whilst with long covid.In context ↗ | Mild | |
| 2023-01-11 | head pressure, ear stuffiness and dizziness greatly better on nattokinaseStarted Nattokinase last weekend. Head pressure, ear stuffiness, dizziness.. all immensely better after a few days.In context ↗ | Mild | Nattokinase |
| 2023-04-07 | second COVID infection brought pain and suicidal thoughtsI've just had another round of covid over a month ago, and I think this shit stacks.In context ↗ | Moderate | |
| 2024-02-15 | skin mottling improved on daily nattokinase but still flares on overdoing itHas improved recently, possibly likely attributed to taking Natto daily. But still happens sometimes if I overdo things, usually in the evenings.In context ↗ | Mild | Nattokinase |
Adverse events
- COVID vaccination as treatment“Had a horrendous relapse 2 weeks after my 1st pfizer jab, resulted in my first A&E trip since infection it was that bad.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Then I started feeling off again weekend prior to last, then last Wednesday happened where u felt like my body was just shuttling down, I felt like I was going to pass out / collapse. Finally after my initial infection I ended up in the hospital that Wednesday.” In context ↗ ER visit
- COVID vaccination as treatment“But my inflammation is back and worse, circulation has gone to shit too.” In context ↗ Autoimmune or inflammatory flare
- COVID vaccination as treatment“Also barely any side effects aside from me feeling ir straight in my heart, following by tachycardia for 6 hours, complete loss of energy and my brain feeling very dead.” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“following by tachycardia for 6 hours, complete loss of energy and my brain feeling very dead” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
Felt like death for the next three days but its a lot better than it used to be.
In context ↗ - Brain fog
the brain fog has returned !!!
In context ↗ - POTS & dysautonomia
Friday I felt like I was about to faint for no reason whatsoever and very shaky
In context ↗ - Sleep problems
have had fully blown insomnia since covid
In context ↗ - Heart symptoms & palpitations
It used to be permanently at 110 and jump up to 130 for no reason
In context ↗ - Breathlessness
give me breathlessness, exhaustion, blue toes, anything but this
In context ↗ - Tinnitus
Tinnitus kept flaring up when I got tired.
In context ↗ - Headaches & migraine
My last two things are brain pressure and tinnitus
In context ↗ - Pain & fibromyalgia
I've forgotten how much pain long covid deals
In context ↗ - Anxiety & low mood
I wanted to kill myself last week
In context ↗ - Temperature regulation
when I do I wake up drenched in sweat
In context ↗ - Vision problems
Brain is just not functioning and vision is funky.
In context ↗
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