Long COVID
Severe → recoveredIll 11 months before improving or writingNeeds ongoing treatment
Bed- or couch-bound with long COVID, now recovered after a nicotine patch and IVIG
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 months
- Last post
- May 2025
In their words
- Condition: Long COVID
I have been long hauling since December of last year.
In context ↗ - At worst: Severe
I was pretty much bed/couch bound and getting worse.
In context ↗ - Now: Recovered
I’ve recovered and I rarely post on here anymore.
In context ↗ - Began after: COVID
I contracted COVID (the one that caused Long COVID) in December 2022.
Read from 140 of their posts and comments; links to the 39 this page draws on
- Dec 2023
- Jan 2024
- Dec 2024
- Jan 2024
- Oct 2023
- Nov 2023
- Oct 2023
- Oct 2023
- Nov 2023
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- Dec 2023
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- Feb 2024
- Nov 2024
Summary
A teacher got COVID in December 2022 and became bed- or couch-bound, barely able to function. Supplements and over-the-counter medicines helped a little; a 7 mg nicotine patch helped hugely within a week, and monthly IVIG later took her further. She reached about 98% by June 2024 and weathered a July reinfection with Paxlovid.
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What they tried
What they credit
Also tried
Flonase· Helped a lotPaxlovid· Helped a lotgabapentin· HelpedAdvil or Tylenol· HelpedNAC· HelpedClaritin· HelpedXyzal· HelpedLow-dose aspirin· HelpedAREDS2· HelpedQuercetin with bromelain· HelpedVit B1· Helpedbrewed cacao· Helpedinhalers· No changeresting and pacing· No changeprednisone· WorsePilates· Worseacupuncture/cupping· Not said
Their words about each treatment
- Flonase · Helped a lot
I used Flonase 2 times a day for a few months. It helped tremendously with that symptom.
In context ↗ - gabapentin · Helped
It definitely helps, but you have to take it 3 times a day.
In context ↗ - prednisone · Worse
When I was on it, it initially made some of my LC symptoms better but then they got much worse. I had to taper off of it.
In context ↗ - inhalers · No change
I have that now and the inhalers are also not working for me.
In context ↗ - Advil or Tylenol · Helped
I can control it with Advil or Tylenol, but I don’t want to be on that all of the time.
In context ↗ - Pilates · Worse
Last week I tried Pilates. I was so weak. I had to modify the modifications.
In context ↗ - resting and pacing · No change
For me, doing nothing but resting and pacing didn’t work.
In context ↗ - nicotine patch · Helped a lot
It was amazing. After about a week my energy levels and brain fog was so much better.
In context ↗ - Paxlovid · Helped a lot
I took Paxlovid for five days. It got rid of it quickly.
In context ↗ - NAC · Helped
I think NAC is the reason why I’m coughing less.
In context ↗ - Claritin · Helped
the antihistamine is definitely clearing my head
In context ↗ - Xyzal · Helped
Have you tried Xyzal or the generic brand? That generally helps me sleep.
In context ↗ - Low-dose aspirin · Helped
What helped the most with my lungs is NAC, aspirin, Nattokinase, turmeric and Quercetin.
In context ↗ - AREDS2 · Helped
AREDS2 (for my eyes)
In context ↗ - Nattokinase · Helped
I take nattokinase and I do believe it helps.
In context ↗ - Magnesium taurate · Helped
Magnesium taurate
In context ↗ - acupuncture/cupping · Not said
I also tried acupuncture/cupping.
In context ↗ - IVIG (immunoglobulin replacement) · Helped a lot
Then the immunoglobulin infusions got me back to 95 to 98% better.
In context ↗ - brewed cacao · Helped
I started drinking brewed cacao instead of coffee. So much better for my stomach.
In context ↗ - electrolyte supplements · Helped
I increased my electrolyte consumption and it helped tremendously with headaches. It also gave me more energy.
In context ↗
Approaches: POTS medication · Anticoagulants · Supplements
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 |
|---|---|---|---|
| December 2022 | COVID-19, then tinnitus, head pressure and moderate fatigue; kept working for the first monthsI started with tinnitus, headaches pressure in my head with moderate fatigue.In context ↗ | Mild | |
| mid 2023 | stopped working; severe symptoms for months, bed/couch bound and getting worseThen I stopped working and the severe symptoms kicked in. It was BRUTAL!! Then I rested for months. I couldn’t do ANYTHING!In context ↗ | Severe | |
| October 2023 | crashed hard after trying PilatesI could barely do it and I crashed hard after that week.In context ↗ | Severe | |
| November 2023 | supplements plus nicotine patch (and a Paxlovid round); walking all day without serious PEMI honestly feel almost like myself. I have been able to walk (all day) for days without having serious PEM issues.In context ↗ | Mild | Nicotine patches |
| December 2023 | patch break between rounds: more tired and foggy than while on itI am more tired and I have more brain fog than I did when I was on the patchIn context ↗ | Mild | |
| March 2024 | about 80-85% recovered, back to working and living her lifeI’m over a year in and I feel like I’m about 80-85% recovered. I’m functioning, working and living my life again.In context ↗ | Mild | Nicotine patches |
| June 2024 | monthly IVIG plus electrolytes; about 98% better and back to workoutsI feel like I’m 98% better. I am working out again (just started in May and I went easy and slow.)In context ↗ | Near normal | IVIG / subcutaneous Ig |
| December 2024 | recovered; exercising without PEM limitsI’ve recovered and I rarely post on here anymore.In context ↗ | Recovered |
Adverse events
- Corticosteroid pulses“After 3 weeks I weaned off of it because I was feeling terrible.” In context ↗ Side effects
- Corticosteroid pulses“When I was on it, it initially made some of my LC symptoms better but then they got much worse. I had to taper off of it.” In context ↗ Made symptoms worse
- “I have no B cells (still) due to the chemo.” In context ↗ Blood count problems
- Paxlovid / nirmatrelvir“You just have to get through the few days of the horrible taste in your mouth.” In context ↗ Side effects
- IVIG / subcutaneous Ig“I didn’t know that and I had a massive headache after it the first couple of times.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
Just walking down stairs was a huge drain for me and I would have to lay down for a long time.
In context ↗ - Brain fog
I’ve been mostly recovered and yet I still have episodes where my brain goes blank
In context ↗ - POTS & dysautonomia
I still get dizzy from standing but the crippling fatigue, brain fog and PEM is shockingly better.
In context ↗ - Tinnitus
Tinnitus and ear fullness was one of my first symptoms.
In context ↗ - Headaches & migraine
I’ve been able to eliminate my recent (past three months) headaches with an increase in electrolytes.
In context ↗ - Gut problems
I had a colonoscopy and did the prep for it and after a few days my Gi symptoms came back.
In context ↗ - Temperature regulation
I have daily fevers and it has been going on for about 5 months. It accompanies a feeling of malaise and chills.
In context ↗ - Breathlessness
One of my main issues was lung pain, and not being able to take a satisfying breath.
In context ↗ - Muscle weakness
Doing anything would leave me so fatigued and feeling as if my muscles were heavy.
In context ↗ - Neuropathy & tingling
I used gabapentin for my nerve pain for the last two months.
In context ↗ - Anxiety & low mood
A few months ago I would lay in bed thinking of how I would do it and what I needed to do to prepare for it.
In context ↗ - Hair loss
I was losing TONS of hair with my Long Covid illness.
In context ↗ - Sleep problems
I’ve gotten used to not sleeping for hours during the night.
In context ↗
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