Long COVID decline over two years, now somewhat better on ketogenic diet
- 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
18 month long hauler here.
In context ↗ - At worst: Moderate
28 months in and I’m still getting worse. PEM is worse. My rosacea is HORRIBLE. POTS is worse. Fibro is new. A year ago I went abroad.. no way I could do that now.
In context ↗ - Now: Somewhat better
I’ve been on keto for 8 weeks though, and have to say I’m noticing a positive effect ... Now I pass out maybe once every month?
- Began after: COVID
18 month long hauler here.
In context ↗
Read from 17 of their posts and comments; links to the 14 this page draws on
Summary
Prairie 25867 fell ill with long COVID in mid-2022 and kept declining over the next two years despite trying around 20 medications and seeing 10 specialists. Cetirizine gave back much of their energy in late 2024, but tolerance built within three weeks and the benefit faded. A ketogenic diet started in late 2025 improved energy and mood and cut post-meal crashes, though POTS and fibromyalgia remained and histamine reactions were still present but milder.
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What they tried
What they credit
Also tried
Their words about each treatment
- NAC · No change
I tried NAC for 4 months but it didn’t help at all.
In context ↗ - LDN · Much worse
Every time I went up I’d be in an awful crash for 2 weeks. Couldn’t get past 1.5.. astounded how people get to 4.5.
In context ↗ - Nexium · Helped
I’m on Nexium now and a no-alcohol or spicy food diet to manage symptoms, otherwise I get the pain, reflux, nausea.
In context ↗ - Ivabradine · Not said
I’ve tried Ivabradine, fludro and midadrine in addition to a host of others
In context ↗ - Novavax · Worse
I got Novavax 2 years after covid started- hadn’t gotten an infection that whole time. After the first one I started getting POTS symptoms
In context ↗ - 16/8 intermittent fasting · Helped
I do 16/8 too.. only dinner. I crash into a coma afterwards, but at least I get my day.
In context ↗ - eating veggies first · Helped
He said by eating veggies first you create a lining on the inside ... I’ve been trying it and I’ve gone a few days without falling into a coma afterwards eating!
In context ↗ - Fexofenadine · No change
I tried Fexofenadine before this and it did nothing
In context ↗ - Zyrtec (Cetirizine) · Helped a lot
After trying Cetirizine I got 70% of my life back – I was shocked and thrilled. Within three weeks, my body built up a tolerance
In context ↗ - bone broth · Worse
it gave me the worst histamine reaction I’ve ever experienced.. couldn’t push through that.
In context ↗ - keto · Helped
I’ve been on keto for 8 weeks though, and have to say I’m noticing a positive effect. Histamine is still the same, but energy and mood has improved
In context ↗ - Louise Hay affirmations and meditations · Helped
I recommend listening to Louise Hay affirmations and mediations ... my LC has actually gotten better as a result.
In context ↗
Approaches: H1 antihistamines · Diet · Mind-body practices
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. The chart starts 2.3 years after onset: the story doesn’t say how ill they were before that. 3 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2022 | long COVID/ME began after COVID18 month long hauler here.In context ↗ | Not stated |
| 2 years after covid started | Novavax doses brought on POTS symptoms and ectopic beatsAfter the first one I started getting POTS symptoms, after the second I was on the waitlist for a table tilt test after my halter monitor came back with over 5000 ectopic beats in 24hrs.In context ↗ | Not stated |
| 3 months after second Novavax dose | caught COVID again3 months later I caught covid despite being just as careful being out in public.In context ↗ | Not stated |
| 2024-11-21 | still declining; PEM, POTS and new fibromyalgia worse, no longer able to travel abroad28 months in and I’m still getting worse. PEM is worse. ... POTS is worse. Fibro is new. A year ago I went abroad.. no way I could do that now.In context ↗ | Moderate |
| 2024-12-05 | cetirizine lifted energy, PEM and moodI tried Zyrtec (Cetirizine) and my energy/PEM/mood is 80% better.In context ↗ | Mild |
| 2024-12-23 | built tolerance to cetirizine within three weeks and lost the gainWithin three weeks, my body built up a tolerance and I was back to low energy, mood and pain.In context ↗ | Moderate |
| 2026-02-18 | keto diet improved energy and moodI’ve been on keto for 8 weeks though, and have to say I’m noticing a positive effect. Histamine is still the same, but energy and mood has improvedIn context ↗ | Mild |
| 2026-06-16 | post-meal crashes far less often and histamine reactions milder on ketoNow I pass out maybe once every month? It also allows me to just snack during the day instead of eating a big meal.In context ↗ | Mild |
Adverse events
- Low-dose naltrexone“Every time I went up I’d be in an awful crash for 2 weeks. Couldn’t get past 1.5..” In context ↗ Made symptoms worse
- Bone broth“so many people advocate for bone broth- it gave me the worst histamine reaction I’ve ever experienced.. couldn’t push through that.” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Brain fog
I’d also be useless after lunch.. brain fogged to the wazoo.
In context ↗ - POTS & dysautonomia
After the first one I started getting POTS symptoms
In context ↗ - Mast cell (MCAS) & allergies
Last year my histamine response was out of control.. sleep coma’s, blocked sinuses and sore throats, gut issues, rashes.
In context ↗ - Sleep problems
I used to pass out after dinner every night for 2.5hrs, impacting my sleep routine.
In context ↗ - Gut problems
I’m on Nexium now and a no-alcohol or spicy food diet to manage symptoms, otherwise I get the pain, reflux, nausea.
In context ↗ - Heart symptoms & palpitations
my halter monitor came back with over 5000 ectopic beats in 24hrs
In context ↗ - Anxiety & low mood
I was back to low energy, mood and pain.
In context ↗ - Flu-like symptoms
blocked sinuses and sore throats
In context ↗
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