Long COVID
Moderate → somewhat betterIll 7 years before improving or writingNeeds ongoing treatment
Long COVID fatigue and brain fog, somewhat better with low-dose naltrexone
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
I am currently only on LDN for COVID
In context ↗ - At worst: Moderate
I am in PT for knee issues currently, and that absolutely wipes me out to the point to that I have to nap when I get home
In context ↗ - Now: Somewhat better
It has helped me quite a lot with fatigue issues and brain fog, but I cannot say that it helped me conquer them, as I have good days and bad days.
In context ↗ - Began after: COVID
Both my doctor and I are pretty sure that I had COVID back in January 2020.
Read from 24 of their posts and comments; links to the 15 this page draws on
Summary
Bluebell 78301 dates long COVID to a suspected COVID infection in January 2020, followed by a full-body itchy rash diagnosed as Wells syndrome and, later, erythema nodosum. An April 2024 reinfection and a fall 2025 Pfizer booster made lingering symptoms worse. Low-dose naltrexone, titrated to 4.5 mg, improved sleep, fatigue and brain fog, though sleep stays broken and exertion still requires naps.
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What they tried
What they credit
Also tried
High dose steroids / prednisone· HelpedMinocycline· HelpedDapsone· HelpedColchicine· HelpedHydroxyzine· HelpedMelatonin· HelpedMagnesium blend / magnesium glycinate· HelpedRizatriptan· HelpedDupixent· WorseZepbound· WorseTopamax· WorsePT for knee issues· WorseCOVID vaccination as treatment· WorsePepcid AC· Not saidEmergen-C· Not said
Their words about each treatment
- High dose steroids / prednisone · Helped
It took high dose steroids, Minocycline and Dapsone over the course of several months to knock it out.
In context ↗ - Colchicine · Helped
I take colchicine daily to keep it in check.
In context ↗ - LDN · Helped
It has helped me quite a lot with fatigue issues and brain fog
In context ↗ - Hydroxyzine · Helped
Hydroxyzine helps me stay asleep past the 3:00 am histamine dump.
In context ↗ - Melatonin · Helped
I also take melatonin, along with a magnesium blend for sleep. They're great at getting me there
In context ↗ - Pepcid AC · Not said
I already take one antihistamine (H2 blocker) pretty regularly to help with erythema nodosum and my overall itchiness.
In context ↗ - Dupixent · Worse
I was on it for about 5 months, and it turned my erethyema nodosum into erythema nodosum migrans ... so I had to drop it entirely.
In context ↗ - Zepbound · Worse
I am on 12.5 mg Zepbound ... every time I dose, I have 3 really bad days afterwards
In context ↗ - Topamax · Worse
weaning myself off that horrid Topamax (migraine suppression)
In context ↗ - Rizatriptan · Helped
Sometimes, I have to take two rizatriptan to get that nonsense to calm down.
In context ↗ - Pacing · Helped
I have been trying to pace myself, and find that I am doing better with pacing and my routines
In context ↗ - PT for knee issues · Worse
I am in PT for knee issues currently, and that absolutely wipes me out to the point to that I have to nap when I get home.
In context ↗ - Emergen-C · Not said
I am drinking a pink lemonade Emergen-C.
In context ↗ - COVID vaccination as treatment · Worse
I think my most recent Pfizer vaccine caused my pre-existing LC to worsen. I developed more symptoms and the ones I had from prior COVID infections got considerably worse.
In context ↗
Approaches: Pacing
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| January 2020 | suspected COVID infection followed by a full-body itchy rash (Wells syndrome)I was very ill and then suffered a very strange, very itchy rash scattered across my bodyIn context ↗ | Not stated | |
| 18 months later (about mid-2021) | full-body Wells rash after a fire ant sting, relentlessly itchy18 months later, after a brief illness, I broke out in the same rash after being stung by a fire ant.In context ↗ | Not stated | |
| April 2024 | COVID reinfection with rash flare and loss of smell and tastethe bout I had in April '24 was a doozyIn context ↗ | Not stated | |
| October 2025 | Pfizer mRNA booster worsened lingering symptoms and added new onesAll of my lingering symptoms increased dramatically and I acquired some new ones as well.In context ↗ | Not stated | |
| 2026 | low-dose naltrexone improved sleep, fatigue and brain fog but limits remainIt has helped me quite a lot with fatigue issues and brain fog, but I cannot say that it helped me conquer them, as I have good days and bad days.In context ↗ | Moderate | Low-dose naltrexone |
Adverse events
- Low-dose naltrexone“I also had to eat something and drink plenty of water when I first started taking it, because it would make me dizzy and nauseated if I didn't. ... I learned today that I cannot go without food and take LDN. Bad things happen.” Side effects
- Low-dose naltrexone“If you take it too late in the day, you will have issues sleeping...like me.” In context ↗ Insomnia from treatment
- Tirzepatide (Mounjaro, Zepbound)“every time I dose, I have 3 really bad days afterwards...all of my symptoms, especially the fatigue, are far worse than they are by 5 or 6 days out. ... Almost like I am getting sick all over again.” Made symptoms worse
- COVID vaccination as treatment“I think my most recent Pfizer vaccine caused my pre-existing LC to worsen. I developed more symptoms and the ones I had from prior COVID infections got considerably worse.” In context ↗ Made symptoms worse
- Dupilumab (Dupixent)“I cannot do Dupixent. I was on it for about 5 months, and it turned my erethyema nodosum into erythema nodosum migrans ... so I had to drop it entirely.” In context ↗ Autoimmune or inflammatory flare
- “When I got my second Shingrix in early June. My arm was red, hot and swollen for more than two weeks. I still have a large are of discoloration and a big knot in my arm.” In context ↗ Side effects
- Corticosteroid pulses“I was on Prednisone and Dapsone to treat Wells - it was for far too long and I gained a lot of weight” In context ↗ Side effects
- “I am in PT for knee issues currently, and that absolutely wipes me out to the point to that I have to nap when I get home.” In context ↗ Made symptoms worse
Symptoms mentioned
Brain fogHeadaches & migraineLight & noise sensitivityLoss of smell or tasteMuscle weaknessPOTS & dysautonomiaSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Brain fog
It has helped me quite a lot with fatigue issues and brain fog
In context ↗ - POTS & dysautonomia
I wake up hot (thanks dysautonomia) around 3:00 every morning
In context ↗ - Sleep problems
They're great at getting me there, but I just can't stay asleep. I wake up exhausted every day.
In context ↗ - Headaches & migraine
Probably 90% of my migraines are with aura.
In context ↗ - Light & noise sensitivity
too much of anything - conversation/light/sound - absolutely drains me
In context ↗ - Loss of smell or taste
I would really love to also get my sense of taste and smell back, as I am just about devoid of both
In context ↗ - Tinnitus
this tinnitus that I didn't have before COVID is often incredibly distracting
In context ↗ - Muscle weakness
I woke up with particularly heavy arms and legs today
In context ↗ - Temperature regulation
I wake up hot (thanks dysautonomia) around 3:00 every morning and then it can take me 3 or 4 hours to fall back to sleep
In context ↗
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