80% bedbound with long COVID, some improvement with ketotifen and LDN
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- May 2026
In their words
- Condition: Long COVID
In 2023 I got long covid, exacerbated by Lyme’s disease in 2024.
In context ↗ - At worst: Severe
I’ve improved from 80% flat on my back to 50% in a year.
In context ↗ - Now: Somewhat better
Gradually imptoved to 50% housebound. After getting a bad cold, back to 50% bedbound and mostly housebound.
In context ↗ - Began after: COVID
In 2023 I got long covid, exacerbated by Lyme’s disease in 2024.
In context ↗
Read from 42 of their posts and comments; links to the 21 this page draws on
Summary
Harbor 16177 got long COVID in October 2023, could work only two to three hours a day, then became 80% bedbound after a Lyme infection in September 2024. Ketotifen, cromolyn and low-dose naltrexone plus a strict elimination diet brought her to about 50% by late 2025, when she walked 3 km. A bad cold in January 2026 put her back to 80% bedbound; by May 2026 she was still mostly housebound and unable to work (FUNCAP 5.0).
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What they tried
What they credit
Also tried
Their words about each treatment
- elimination diet · Helped a lot
Elimination diet showed my sensitivity to grains, dairy, nuts, coffee, tea, chocolate, fermented foods, some spices. When I started avoiding those, I felt so much better.
In context ↗ - Fexofenadine · Helped
Fexofenadine used to work well for me, but I became intolerant to the cornstarch that was used as a filler.
In context ↗ - rigorous pacing · Helped
What has helped me? Rigorous pacing.
In context ↗ - vagus nerve exercises · Helped
Why don’t you try vagus nerve exercises first? They improved my sleep and they cost you nothing.
In context ↗ - low histamine diet · Not said
I think I have MCAS and am on a low histamine diet, antihistamine and mastcell stabilisers.
In context ↗ - Loratidine · Helped
Loratidine and famotidine worked for a bit, but ketotifen gave me an extra boost.
In context ↗ - Famotidine · Helped
Ketotifen and famotidine plus LDN have been very helpful for me
In context ↗ - Ketotifen · Helped a lot
Yes. Ketotifen was a game changer for me. I take it twice a day.
In context ↗ - Cromolyn sodium (Nalcrom) · Helped
Pacing, ketotifen and cromolyn sodium
In context ↗ - low dose naltrexone (LDN) · Helped
I started ketotifen first. When I was not having a flare from that, I started LDN at 0.25 mg and titrated up every 2 weeks.
In context ↗ - mold avoidance · Not said
I have to avoid mold like the plague
In context ↗ - quercetin · Not said
Nalcrom before meals and at bedtime, quercetin and ketotifen spread out over the day.
In context ↗ - COVID vaccination as treatment · Not said
I’ve had 3 and every time I had a strong reaction lasting days
In context ↗
Approaches: H2 blockers · Antihistamines & MCAS · Diet · Pacing
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 |
|---|---|---|
| October 2023 | Long COVID after a second COVID infection; still able to work a few hours a dayMy second covid infection resulted in relatively mild LC in October ‘23 ... was able to function a bit and work 2-3 hours per day (self employed) | Mild |
| September 2024 | Lyme infection pushed her over the rim; 80% bedboundIn September ‘24 I had a Lyme infection which pushed me over the rim. 80% bedbound at first.In context ↗ | Severe |
| December 2025 | About 50% better on mast cell meds and LDN; walked 3 kmNow 50% better and started LDN ... Last Sunday I walked 3 Km. | Moderate |
| January 2026 | reversed to 80% bedbound after a bad coldI am dealing with a bad cold and immediately reversed to 80% bedbound.In context ↗ | Severe |
| May 2026 | Resting a lot and not going out much; unable to workMy funcap score is 5.0 but I couldn’t possibly work. I am doing that well by resting a lot and not going out much.In context ↗ | Moderate |
Adverse events
- Low-dose naltrexone“Every time I increase the dose by 0.25 mg I get worse before I get better. Dizzy, POTS, blurred vision, tinnitus, muscle aches.” In context ↗ Side effects
- COVID vaccination as treatment“I’ve had 3 and every time I had a strong reaction lasting days” In context ↗ Side effects
- Fexofenadine (Allegra)“Fexofenadine used to work well for me, but I became intolerant to the cornstarch that was used as a filler.” In context ↗ Other
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Debilitating fatigue, migraines, muscle & joint pain, POTS, PEM, blurred vision, tinnitus, clogged ear, food and inhalant intolerance.
In context ↗ - POTS & dysautonomia
I did have POTS at first. Now it only happens if I overdid it.
In context ↗ - Mast cell (MCAS) & allergies
I have a long list of allergies and intolerances and over my 66 year lifespan the list keeps growing.
In context ↗ - Pain & fibromyalgia
Debilitating fatigue, migraines, muscle & joint pain, POTS, PEM
In context ↗ - Vision problems
Also, I keep having double or triple vision.
In context ↗ - Tinnitus
Debilitating fatigue, migraines, muscle & joint pain, POTS, PEM, blurred vision, tinnitus
In context ↗ - Sleep problems
Why don’t you try vagus nerve exercises first? They improved my sleep and they cost you nothing.
In context ↗
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