Long COVID with MCAS, gut and joint pain, somewhat better with LDN and ketotifen
- Condition
- Long COVID
- At worst
- Not stated
- Ill before improving or writing
- Not stated
- Last post
- May 2025
In their words
- Condition: Long COVID
LC spawned raging MCAS and exacerbated GI issues I'd had under control.
In context ↗ - Now: Somewhat better
I noticed a big difference after I started taking low-dose naltrexone, and again when I added ketotifen.
In context ↗ - Began after: COVID
I was lucky enough to have weekly massage for a while after I had Covid
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Dune 22535 developed long COVID with raging MCAS, worsened gut problems and joint pain without RA markers. Low-dose naltrexone made a big difference and adding ketotifen helped again, though both later seemed less effective while they were pushing harder and flaring. A keto-based diet, supplements, high-sodium electrolytes and garden-fresh food usually keep symptoms on an even keel, and weekly massage soon after infection seemed to hold off LC symptoms for at least a month.
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What they tried
What they credit
Also tried
Their words about each treatment
- low-dose naltrexone · Helped
I noticed a big difference after I started taking low-dose naltrexone
In context ↗ - ketotifen · Helped
and again when I added ketotifen
In context ↗ - keto-based diet · Helped
I've found a keto-based diet helps me
In context ↗ - supplements · Helped
Keto + supplements/high-sodium electrolytes + garden-fresh food can usually keep me on an even keel
In context ↗ - massage · Helped
Massage really is helpful!
In context ↗
Approaches: POTS medication · Antihistamines & MCAS · Diet
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 | After |
|---|---|---|
| onset | COVID infection followed by long COVID with MCAS and worsened gut issuesLC spawned raging MCAS and exacerbated GI issues I'd had under control.In context ↗ | |
| 2025-04-20 | big difference in joint pain after starting low-dose naltrexoneI noticed a big difference after I started taking low-dose naltrexoneIn context ↗ | Low-dose naltrexone |
| 2025-04-20 | another improvement after adding ketotifenand again when I added ketotifenIn context ↗ | Ketotifen (Zaditen) |
| 2025-04-20 | treatments felt less effective while pushing harder and flaring moreThese days, they seem a little less effective, but I've been pushing harder and flaring more, so...In context ↗ | |
| 2025-04-24 | keto diet, supplements, high-sodium electrolytes and fresh food keeping an even keelKeto + supplements/high-sodium electrolytes + garden-fresh food can usually keep me on an even keel.In context ↗ | Keto and low-carb diets |
Symptoms mentioned
Their words about their symptoms
- Pain & fibromyalgia
joint pain without any RA markers in my bloodwork
In context ↗ - Mast cell (MCAS) & allergies
LC spawned raging MCAS
In context ↗ - Gut problems
exacerbated GI issues I'd had under control
In context ↗ - Post-exertional malaise
I've been pushing harder and flaring more
In context ↗
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