ME/CFS and MCAS limited to five foods, now mostly controlled after Xolair and ketotifen
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- years
- Last post
- Oct 2022
In their words
- Condition: ME/CFS
I used it occasionally before developing ME.
In context ↗ - Now: Somewhat better
my MCAS symptoms are pretty controlled most days and I can eat higher histamine foods in moderation
In context ↗
Read from 5 of their posts and comments; links to the 4 this page draws on
Summary
A Reddit user with ME/CFS and post-infectious MCAS. Six months before October 2022 they were hospitalised with rebounding anaphylaxis and could eat only about five foods; by October their MCAS was mostly controlled and they ate higher-histamine foods in moderation, with Xolair, ketotifen and antihistamines having helped. They still had PEM and pain, eased by something they didn't name. A fourth dose was roughest, with a fever; they returned to baseline.
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What they tried
What they credit
Also tried
Their words about each treatment
- Aggressive rest · Not said
Aggressive rest, increased coQ10
In context ↗ - coQ10 · Not said
increased coQ10
In context ↗ - hydration with electrolytes · Not said
hydration with electrolytes
In context ↗ - Compressing stockings · Not said
Compressing stockings when I’m out of bed
In context ↗ - indica cannabis strains (edibles) · Helped
Now it’s the #1 thing that helps me with pain, etc. I actually even feel like it helps me get through PEM
In context ↗ - icepacks on neck and back · Helped
icepacks on my neck and back help me cope
In context ↗ - Xolair · Helped
Xolair has been helping me with hives
In context ↗ - Ketotifen · Helped
Ketotifen is another (compounded) medication that’s helped me
In context ↗ - 4th Covid vaccine · Worse
The 4th one was honestly the roughest for me with side effects. I did get back to baseline, but initially spiked a fever and felt really sick.
In context ↗
Approaches: Antihistamines & MCAS
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | developed ME/CFS after a post-infectious illnessI used it occasionally before developing ME.In context ↗ | Not stated |
| about April 2022 (six months before October 2022) | hospitalised with rebounding anaphylaxis, able to eat only about five foods6 months ago I was in the hospital with rebounding anaphylaxis and could only eat around 5 foods.In context ↗ | Severe |
| 2022-10-18 | MCAS mostly controlled most days and able to eat higher-histamine foods in moderationMore recently, my MCAS symptoms are pretty controlled most days and I can eat higher histamine foods in moderation.In context ↗ | Mild |
| 2022-10-27 | still gets PEM and pain eased by cannabis; back to baseline after the fourth COVID vaccineI did get back to baseline, but initially spiked a fever and felt really sick.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“The 4th one was honestly the roughest for me with side effects. I did get back to baseline, but initially spiked a fever and felt really sick.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I actually even feel like it helps me get through PEM
In context ↗ - Pain & fibromyalgia
it’s the #1 thing that helps me with pain, etc.
In context ↗ - Mast cell (MCAS) & allergies
I have post-infectious illness and/including MCAS, but not long COVID.
In context ↗ - Light & noise sensitivity
limiting light and noise ... Eye masks and earplugs/headphones are helpful for sensory sensitivities.
In context ↗
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