Long COVID
No benefitIll for 2 yearsNeeds ongoing treatment
Long COVID with brain fog and POTS, Perrin technique and Xolair brought no lasting benefit
- Condition
- Long COVID
- At worst
- Not stated
- Ill for
- 2 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
I’m coming up to 2 years of LC in March 17.
In context ↗ - Now: No benefit
I have been in decline since Aug 2024 and have not made any significant progress in the past few years
In context ↗ - Began after: COVID
The month before my infection I was starting to feel joy again after years of relentless suffering and then I got sick a few weeks after.
Read from 6 of their posts and comments; links to the 4 this page draws on
Summary
Ill with long COVID since March 2024, aged 20, she has been in decline since August 2024 with brain fog, POTS and post-COVID MCAS, losing her education, career and independence. She says the Perrin technique, started in November 2025, has helped her, while a February 2026 improvement did not last. She pays privately for treatments costing hundreds of pounds, and in August 2026 had a bad reaction to her first Xolair injection.
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What they tried
Also tried
Their words about each treatment
- Dysautonomia meds · No change
I feel the Dysautonomia meds have not helped me
In context ↗ - Perrin technique · Helped
began Perrin technique in November. It’s been helping me
In context ↗ - Fexofenadine · Worse
Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms) ... Fexofenadine
In context ↗ - ketotifen · Worse
Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms) ... generic ketotifen, compounded ketotifen
In context ↗ - Levoceterizine · Worse
Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms) ... Levoceterizine liquid and pills
In context ↗ - famotodine · Worse
Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms) ... famotodine
In context ↗ - compounded sodium cromoglicate · No change
Tried and no response: compounded sodium cromoglicate - started at 100mg twice daily to total of 600mg.
In context ↗ - Xolair · Worse
I had my first Xolair shot on 2 Aug. 300mg subc on stomach fat. Had terrible side effects since then.
In context ↗ - LDN · Not said
These are the same side effects I had when I ran out of LDN for 3 weeks.
In context ↗
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 5 months after onset: the story doesn’t say how ill they were before that. 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 | After |
|---|---|---|---|
| March 2024 | got long COVID at age 20I’m coming up to 2 years of LC in March 17. I got sick at 20 and am now 22.In context ↗ | Not stated | |
| August 2024 | began a steady declineI have been in decline since Aug 2024 and have not made any significant progress in the past few yearsIn context ↗ | Moderate | |
| November 2025 | started Perrin technique, which helpedbegan Perrin technique in November. It’s been helping meIn context ↗ | Moderate | Perrin Technique |
| February 2026 | improved briefly in February then fell backhad some improvement in Feb last month but then fell back down againIn context ↗ | Moderate | |
| August 2026 | severe reaction after first Xolair injectionHad terrible side effects since then. Today is day 7. Side effects such as body pain, malaise, worsening fatigue, worsening potsIn context ↗ | Moderate |
Adverse events
- Fexofenadine (Allegra)“Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms): Fexofenadine, generic ketotifen, compounded ketotifen, Levoceterizine liquid and pills, famotodine.” In context ↗ Side effects
- Ketotifen (Zaditen)“Tried and reacted to (anti cholinergic effects, burning skin, facial flushing, racing thoughts, rapid heart rate, worse temp regulation, worse pots symptoms): Fexofenadine, generic ketotifen, compounded ketotifen, Levoceterizine liquid and pills, famotodine.” In context ↗ Side effects
- Ketotifen (Zaditen)“generic ketotifen, compounded ketotifen, Levoceterizine liquid and pills, famotodine.” In context ↗ Side effects
- Levocetirizine (Xyzal)“compounded ketotifen, Levoceterizine liquid and pills, famotodine.” In context ↗ Side effects
- Famotidine (Pepcid)“Levoceterizine liquid and pills, famotodine.” In context ↗ Side effects
- Omalizumab / Xolair“Had terrible side effects since then ... Side effects such as body pain, malaise, worsening fatigue, worsening pots, dry eyes and mouth, very sore throat.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
brain fog is killing me and my intellect is gone
In context ↗ - POTS & dysautonomia
worse pots symptoms
In context ↗ - Mast cell (MCAS) & allergies
Post covid MCAS.
In context ↗ - Mast cell (MCAS) & allergies
I have an allergy to mold that I discovered recently
In context ↗ - Flu-like symptoms
body pain, malaise, worsening fatigue, worsening pots, dry eyes and mouth, very sore throat
In context ↗ - Anxiety & low mood
I feel so hurt and alone. Everyday is a struggle.
In context ↗