Long COVID with extreme post-exertional malaise, much better with H1/H2 antihistamines
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- May 2022
In their words
- Condition: Long COVID
I got vaxed while long hauling hoping it could help
In context ↗ - At worst: Moderate
not being able move or think much
In context ↗ - Now: Much better
I've mostly recovered but this and the fatigue waves still interfere largely
In context ↗ - Began after: COVID
I went through a course of the ridiculously expensive supplement during a reinfection
Read from 16 of their posts and comments; links to the 10 this page draws on
Summary
Puffin 56232 developed long COVID with extreme post-exertional malaise, breathlessness, brain fog and muscle soreness. Graded exercise, niacin and B vitamins reduced the crashes, and H1/H2 antihistamines, montelukast and nasal crom were the things that clearly helped. By late 2021 they had mostly recovered, though fatigue waves still interfered. Natto/serra and lumbrokinase caused repeated brief anaphylaxis.
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What they tried
What they credit
Also tried
Their words about each treatment
- graded exercise · Helped
graded exercise, that and niacin took me from being totally knocked out to just being way more sore then I expected
In context ↗ - niagen (nicotinamide riboside) · Helped
I started niagen (300mg) and b complex (35 mg Niacinamide) at the same time so idk which is doing what but by day 5 the exercise revenge was significantly reduced
In context ↗ - electrolytes · Not said
electrolytes with water to an almost extreme
In context ↗ - chest strap heart rate monitor · Not said
use a chest strap heart rate monitor paired to pc/phone to keep an eye on hr
In context ↗ - albuterol inhaler · No change
inhaler of little help
In context ↗ - montelukast / singulair · Helped a lot
took montelukast after realizing I hadn't before the activity and within the hour felt great
In context ↗ - H1 antihistamines · Helped
The only thing I can for sure say has worked for me is h1+h2 antihistamines 2x/day, nasalcrom, singulair
In context ↗ - pataday · Helped
and pataday (in combination with reducing histamine exposure)
In context ↗ - COVID vaccination · No change
I got vaxed while long hauling hoping it could help, the month between was awful but was fine (well the new definition of fine) after second shot.
In context ↗ - natto/serra · Much worse
Every single dose I had of natto/serra or lumbrokinase and usually a baby aspirin put me into a 5 min anaphylaxis onset that always cleared up and wound down to nothing over a month.
In context ↗ - lumbrokinase · Helped
Every single dose I had of natto/serra or lumbrokinase and usually a baby aspirin put me into a 5 min anaphylaxis onset
In context ↗ - fish oil · Not said
Fish oil is also a good supplement for this and other reasons.
In context ↗ - creatine · Helped
protein powder, dribose, creatine, glutamine, and bcaa
In context ↗ - anaerobic exercise · Worse
Anerobic exercise specifically is pretty disastrous so far.
In context ↗ - Tollovid · Not said
I went through a course of the ridiculously expensive supplement during a reinfection, it might have helped me get closer to baseline more quickly or maybe not IDK.
In context ↗ - time · Helped
The original inflammation and whatever the heck caused such insane pem seem to have faded over time
In context ↗
Approaches: H1 antihistamines · H2 blockers · Antihistamines & MCAS · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | long COVID, totally knocked outtook me from being totally knocked out to just being way more sore then I expectedIn context ↗ | Moderate |
| 2020-11-28 | graded exercise and niacin reduced crashesthat and niacin took me from being totally knocked out to just being way more sore then I expectedIn context ↗ | Mild |
| 2021-03-20 | antihistamines and montelukast helpedThe only thing I can for sure say has worked for me is h1+h2 antihistamines 2x/dayIn context ↗ | Mild |
| 2021-11-13 | mostly recoveredI've mostly recovered but this and the fatigue waves still interfere largelyIn context ↗ | Mild |
| 2022-05-22 | no real changesNo real changes one way or the other.In context ↗ | Mild |
Adverse events
- Nattokinase, Serrapeptase, Lumbrokinase“Every single dose I had of natto/serra or lumbrokinase and usually a baby aspirin put me into a 5 min anaphylaxis onset that always cleared up and wound down to nothing over a month.” In context ↗ Allergic reaction / anaphylaxis
- COVID vaccination as treatment“I got vaxed while long hauling hoping it could help, the month between was awful but was fine (well the new definition of fine) after second shot.” In context ↗ Made symptoms worse
- H1 antihistamines (unspecified), Allergy eye drops“just hoping that controlling allergies for long enough will reduce the need for antihistamines as they definitely dry you out” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
once the deficiency was resolved the extreme pem hasn't recurred
In context ↗ - Brain fog
not being able move or think much
In context ↗ - Breathlessness
I just can't fill my lungs no matter how hard I try
In context ↗ - Pain & fibromyalgia
The muscle soreness is still very real though
In context ↗
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