Long COVID
Moderate → somewhat betterIll 4 years before improving or writing
Long COVID, mostly housebound, somewhat better on antihistamines and tirzepatide/LDN
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Jun 2026
In their words
- Condition: Long COVID
I've been dealing with long covid since my first covid infection in June 2022
In context ↗ - At worst: Moderate
I barely leave the house and the smallest errand feels crushing
In context ↗ - Now: Somewhat better
I still can't exercise and I'm not back to my pre-LC baseline (and don't expect to be), but I do feel more quality of life.
In context ↗ - Began after: COVID
I've been dealing with long covid since my first covid infection in June 2022.
Read from 33 of their posts and comments; links to the 19 this page draws on
Summary
Orchid 35184 developed long COVID after a COVID-19 infection in June 2022, with POTS-like symptoms, post-exertional malaise, fatigue and brain fog. A reinfection and a house move left them mostly housebound. Lumbrokinase didn't clear their brain fog, but H1/H2 antihistamines eased brain fog and a poisoned feeling; metformin worsened symptoms. A tirzepatide trial plus low-dose naltrexone gave the biggest gains in mood and energy, though they still cannot exercise.
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What they tried
What they credit
Also tried
humming· Helpeda glass of wine· HelpedNovavax· No changemassage· WorsePfizer booster· Worseberberine· Worsegentle yoga· WorseTruvada· WorseMeditation, yoga, breathwork· Worsemetformin· Much worsemaraviroc (trial of HIV antivirals)· Much worsepacing· Not saidlemon balm tea· Not saiddry brushing· Not said
Their words about each treatment
- pacing · Not said
I still needed to pace and I rested throughout the day
In context ↗ - massage · Worse
I've had three 30-45 minute massages over the past 1.5 years and each time I get bad PEM for 2-3 days
In context ↗ - humming · Helped
I found that humming really helps: it stimulates the vagus nerve
In context ↗ - a glass of wine · Helped
I had energy again. Since then, I've repeated it as an experiment
In context ↗ - lemon balm tea · Not said
I love lemon balm! I drink the tea throughout the week.
In context ↗ - Novavax · No change
I chose to get Novovax after hearing lots of anecdotal responses that it had gone better for most LC folks
In context ↗ - Pfizer booster · Worse
I didn't notice the same dramatic worsening of my condition that I did when I got the Pfizer booster
In context ↗ - metformin · Much worse
Except it's made my LC symptoms SO much worse. Brain fog that had faded for the most part came back full force and my fatigue is intolerable.
In context ↗ - berberine · Worse
I tried berberine but it made me nauseous after a while.
In context ↗ - lumbrokinase · Helped
I've responded well to two weeks of lumbrokinase + bromelain
In context ↗ - loratidine (Claritin) · Helped
I've been taking them for over a month and noticed my fatigue and brain fog improve.
In context ↗ - famotidine (Pepcid) · Helped
They've worked to address MCAS for me. I've been taking them for over a month and noticed my fatigue and brain fog improve.
In context ↗ - dry brushing · Not said
Start slow and spread out dry brush sessions, ultimately working up to once a day.
In context ↗ - gentle yoga · Worse
even just two minutes of "gentle yoga" triggers symptoms
In context ↗ - Truvada · Worse
I had Truvada. It made everything worse: brain fog, fatigue, headaches, tinnitus, you name it.
In context ↗ - maraviroc (trial of HIV antivirals) · Much worse
I was in it and it made me so much worse.
In context ↗ - tirzepatide · Helped
It helped almost immediately with inflammation and brain fog. I also feel more stable: things that would have sent me into a crash don't lay me out anymore.
In context ↗ - LDN · Helped a lot
Adding LDN is where I saw the biggest improvements: improved mood, more energy, more stability.
In context ↗
Approaches: GLP-1 drugs · H1 antihistamines · H2 blockers · 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 |
|---|---|---|---|
| June 2022 | COVID-19 infection followed by long COVIDI've been dealing with long covid since my first covid infection in June 2022. (I developed POTS-like symptoms, though I was never formally diagnosed, along with PEM, fatigue, and brain fog.In context ↗ | Moderate | |
| about six months into illness | POTS-like symptoms cleared, fatigue and crashes remainedAfter six month, the POTS symptoms went away but I'm still dealing with fatigue and crash pretty badly after mild or moderate activity.In context ↗ | Moderate | |
| November 2023 | COVID reinfection, worse for six months then lower baselinemy symptoms got worse for about six month and I experienced new symptoms, like depression.In context ↗ | Moderate | |
| January 2024 | moved into a new duplex and symptoms nosedivedI moved into a new duplex (renovated in the last five years) in Jan and everything took a nosedive within two weeks.In context ↗ | Moderate | |
| April 2024 | three-day crash after returning from an international trip to Spainsince returning home, I've been in a three-day crash that I can't seem to get out of no matter how much I restIn context ↗ | Moderate | |
| May 2024 | life grown far more restrictive, barely leaving the houseI barely leave the house and the smallest errand feels crushing.In context ↗ | Moderate | |
| August 2025 | metformin brought back brain fog and intolerable fatigueExcept it's made my LC symptoms SO much worse. Brain fog that had faded for the most part came back full force and my fatigue is intolerable.In context ↗ | Moderate | |
| August 2025 | lumbrokinase plus bromelain eased poisoned feelingI've responded well to two weeks of lumbrokinase + bromelainIn context ↗ | Moderate | |
| November 2025 | H1/H2 antihistamines improved fatigue and brain fogI've been taking them for over a month and noticed my fatigue and brain fog improve. I still need to rest but I don't have the poisoned/heavy cement feeling anymore.In context ↗ | Moderate | Loratadine (Claritin) |
| January 2026 | Truvada trial made everything worseI had Truvada. It made everything worse: brain fog, fatigue, headaches, tinnitus, you name it.In context ↗ | Moderate | |
| June 2026 | tirzepatide trial plus low-dose naltrexone gave biggest gainsIt helped almost immediately with inflammation and brain fog. I also feel more stable: things that would have sent me into a crash don't lay me out anymore.In context ↗ | Mild | Tirzepatide (Mounjaro, Zepbound) |
Adverse events
- COVID vaccination as treatment“I didn't notice the same dramatic worsening of my condition that I did when I got the Pfizer booster.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“while it triggered fatigue for me day-of” In context ↗ Side effects
- Massage“I've had three 30-45 minute massages over the past 1.5 years and each time I get bad PEM for 2-3 days” In context ↗ Made symptoms worse
- Metformin“it's made my LC symptoms SO much worse. Brain fog that had faded for the most part came back full force and my fatigue is intolerable” In context ↗ Made symptoms worse
- Berberine“I tried berberine but it made me nauseous after a while.” In context ↗ Gut side effects
- Famotidine (Pepcid)“Taking 20mg at once made my symptoms worse initially.” In context ↗ Made symptoms worse
- Meditation, yoga, breathwork“even just two minutes of "gentle yoga" triggers symptoms” In context ↗ Made symptoms worse
- Emtricitabine-tenofovir (Truvada, Descovy)“I had Truvada. It made everything worse: brain fog, fatigue, headaches, tinnitus, you name it.” In context ↗ Made symptoms worse
- Tirzepatide (Mounjaro, Zepbound)“The downside was the anhedonia. It got really bad.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsHeadaches & migraineMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPost-exertional malaiseTinnitus
Their words about their symptoms
- Post-exertional malaise
I'm still dealing with fatigue and crash pretty badly after mild or moderate activity
In context ↗ - Brain fog
Brain fog that had faded for the most part came back full force
In context ↗ - POTS & dysautonomia
I developed POTS-like symptoms, though I was never formally diagnosed
In context ↗ - Anxiety & low mood
I experienced new symptoms, like depression
In context ↗ - Mast cell (MCAS) & allergies
They've worked to address MCAS for me
In context ↗ - Flu-like symptoms
I felt like I had some combo of the flu/concussion nearly all the time
In context ↗ - Headaches & migraine
It made everything worse: brain fog, fatigue, headaches, tinnitus, you name it
In context ↗ - Muscle weakness
my body feels heavier than it ever has during past crashes
In context ↗
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