Long COVID
Moderate → much betterIll 5.5 years before improving or writingNeeds ongoing treatment
Long COVID with POTS, fatigue and brain fog, now much better on LDN
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5.5 years
- Last post
- Jan 2026
In their words
- Condition: Long COVID
I too am a long hauler, 8 months in.
In context ↗ - At worst: Moderate
went from 1800 steps a day for months to now hitting 10000+ a day
In context ↗ - Now: Much better
Fatigue is so much better, brain fog is better. Living life again. Am I back to 100% no but I will take whatever improvement that I can get.
In context ↗ - Began after: COVID
I contracted covid at work as a nurse working the covid unit.
Read from 44 of their posts and comments; links to the 29 this page draws on
Summary
A Chicago hospital nurse, she caught COVID in June 2020 and long-hauled with POTS, fatigue, joint pain, brain fog and a travelling rash. Two Moderna doses in early 2021 brought her to about 80-90%, but a cold, a 2023 reinfection and work stress caused repeated crashes. Hydroxychloroquine with prednisone helped until an allergic reaction; low-dose naltrexone from mid-2025 eased fatigue and joint pain. She had to quit her job and is not back to 100%.
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What they tried
What they credit
Also tried
prednisone· Helped a lot · wore offbeta blockers (atenolol, then propranolol)· Helpedbeta blockers (atenolol, then propranolol)· Helpedsteroid cream· Helped · wore offAllegra, Zyrtec, Benadryl· HelpedAllegra, Zyrtec, Benadryl· HelpedAllegra, Zyrtec, Benadryl· Helpeddeep tissue massage· HelpedPaxlovid· Helped · wore offTylenol and ibuprofen· Helpeddoxycycline, azithromycin, cefdinir· No changedoxycycline, azithromycin, cefdinir· No changedoxycycline, azithromycin, cefdinir· No changehydroxychloroquine· Worsesleep medication· WorseBupropion (Wellbutrin)· Much worsefamotidine· Not saidvitamin D· Not saidHRT· Not saidzepbound (tirzepatide)· Not said
Their words about each treatment
- doxycycline, azithromycin, cefdinir · No change
Nope, antibiotics have not helped.
In context ↗ - beta blockers (atenolol, then propranolol) · Helped
I have been diagnosed with POTS on beta blockers now which is helping with the crazy heart rate.
In context ↗ - paroxetine (Paxil) · Helped a lot
Started again in the fall. Has helped tremendously.
In context ↗ - Moderna vaccine · Helped a lot
What finally helped me after 10 months was the vaccine.
In context ↗ - steroid cream · Helped
I tried a steroid cream, helped for a bit but the rash would come back.
In context ↗ - Allegra, Zyrtec, Benadryl · Helped
The antihistamines help.
In context ↗ - famotidine · Not said
I also take Allegra and famotidine in the mornings and Zyrtec in the evenings.
In context ↗ - deep tissue massage · Helped
Try a deep tissue massage. Helped me a lot with muscle and joint pain.
In context ↗ - walking · Helped
I find for myself that I need to walk everyday otherwise I go backwards fast
In context ↗ - prednisone · Helped a lot
Prednisone was the best for helping me but can only take for a short time
In context ↗ - hydroxychloroquine · Worse
I had a severe allergic reaction to the hydroxychloroquine.
In context ↗ - Paxlovid · Helped
Paxlovid made me feel so much better then after a couple weeks back to long hauling.
In context ↗ - Tylenol and ibuprofen · Helped
Tylenol and ibuprofen alternating between to keep my fever under control it was 103.
In context ↗ - sleep medication · Worse
If I take something to sleep it’s hard to function.
In context ↗ - Bupropion (Wellbutrin) · Much worse
Bupropion made my pots so much worse.
In context ↗ - vitamin D · Not said
I am taking propranolol -very low dose, allegra, vitamin D and tritrating up LDN to 4.5.
In context ↗ - LDN · Helped a lot
Fatigue is so much better, brain fog is better. Living life again.
In context ↗ - HRT · Not said
the gyno put me on HRT, because she feels that menopause explains it all lol.
In context ↗ - Mediterranean diet · Helped
Changing diet helps a lot for me, nothing crazy just trying to eat more of a mediterranean diet.
In context ↗ - zepbound (tirzepatide) · Not said
I just started zepbound 2 weeks ago.
In context ↗
Approaches: SSRIs · Diet · Exercise and activity · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| June 2020 | caught COVID working the covid unit; could not return to hospital workI first got covid in 2020 working the covid unit.In context ↗ | Moderate | |
| March 2021 | felt better after second Moderna dose, about 80% of old selfHave been feeling the best that I have been in months. Not a full 100% more like 80% but I’ll take it!In context ↗ | Mild | COVID vaccination as treatment |
| June 2021 | back up to 10,000+ steps a day and working as a school nurseThere’s improvement went from 1800 steps a day for months to now hitting 10000+ a day.In context ↗ | Mild | |
| November 2021 | massive slide back after a coldYep, had a cold about 4 weeks ago, massive slide back with the long haul BS.In context ↗ | Moderate | |
| April 2023 | felt the best ever on hydroxychloroquine with prednisoneMy doc had me on hydroxychloroquine for and prednisone 8 weeks. Felt the best I’ve ever felt!In context ↗ | Mild | Hydroxychloroquine / Plaquenil |
| April 2023 | worse after stopping prednisone and an allergic reaction to hydroxychloroquineI am worse off then I was when I started it ... I’m back to square 1.5 nowIn context ↗ | Moderate | |
| mid 2023 | close to her old self againJust started to get close to myself and bam 2nd infection in September.In context ↗ | Near normal | |
| September 2023 | second COVID infection set her backNot completely back to myself but close enough to enjoy life again when the 2nd infection happened. Back to being miserable.In context ↗ | Moderate | |
| summer 2024 | worst crash after work stress; had to quit her jobThis is the worst crash I’ve had. Needed to quit working luckily I was able to.In context ↗ | Moderate | |
| July 2025 | coming out of the nine-month crashI am just now getting out of the worst crash.In context ↗ | Moderate | Corticosteroid pulses |
| August 2025 | fatigue and brain fog better on low-dose naltrexone 4.5 mgFatigue is so much better, brain fog is better. Living life again. Am I back to 100% no but I will take whatever improvement that I can get.In context ↗ | Mild | Low-dose naltrexone |
| January 2026 | still on LDN, started Zepbound; working part-timeI noticed a difference with LDN. I am at 4.5mg and been there for a few months now.In context ↗ | Mild | Low-dose naltrexone |
Adverse events
- COVID vaccination as treatment“First one kicked my ass for 4 weeks” In context ↗ Made symptoms worse
- COVID vaccination as treatment“second kicked my ass for a week” In context ↗ Made symptoms worse
- Hydroxychloroquine / Plaquenil“I had a severe allergic reaction to the hydroxychloroquine. Hives all over, increase in shortness of breath.” In context ↗ Allergic reaction / anaphylaxis
- Hydroxychloroquine / Plaquenil“without prednisone I would break out in rash because of this one” In context ↗ Side effects
- Corticosteroid pulses“otherwise weight gain and steroid rage hit me pretty hard” In context ↗ Mood or psychiatric effects
- Bupropion (Wellbutrin)“Bupropion made my pots so much worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- POTS & dysautonomia
Pots is my main issue
In context ↗ - Brain fog
brain fog are almost unbearable
In context ↗ - Pain & fibromyalgia
I have what I call flairs where the joints ache
In context ↗ - Heart symptoms & palpitations
still have heart rate issues but controlling with meds
In context ↗ - Post-exertional malaise
I’m walking again but can only do 2 miles otherwise I relapse
In context ↗ - Mast cell (MCAS) & allergies
oh and lets not forget the darn hives and generalized itchy skin
In context ↗ - Anxiety & low mood
SSRI-helps with the stress and panic attacks
In context ↗ - Sleep problems
OMG I was sleeping like 12 hours a night
In context ↗ - Temperature regulation
Still have issues regulating temperature either hot and sweaty or cold.
In context ↗ - Headaches & migraine
First week after that I had the worst headache and sinus pain.
In context ↗ - Breathlessness
increase in shortness of breath
In context ↗ - Loss of smell or taste
Still have some crazy scents going on.
In context ↗
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