Long COVID with POTS, brain fog and fatigue, now about 90% better after Xolair
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Jun 2024
In their words
- Condition: Long COVID
My long covid started 10 days after my moderna booster.
In context ↗ - At worst: Moderate
My main symptoms started as low blood pressure, severe hives, then after second infection GERd and SIBO.
In context ↗ - Now: Near normal
An allergist and a naturopath have been helping me and I'm 90% better.
In context ↗ - Began after: a vaccination
My long covid started 10 days after my moderna booster.
In context ↗
Read from 19 of their posts and comments; links to the 10 this page draws on
Summary
They developed long COVID in January 2022, ten days after a third Moderna booster, with hives, low blood pressure, POTS, brain fog, fatigue, and later GERD and SIBO after a COVID infection. Xolair injections, rifaximin with a low-FODMAP diet, antihistamines, vitamins, Zoloft and daily walking brought them to about 90% better by June 2024, though fragrance and smoke sensitivities remain.
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What they tried
What they credit
Also tried
Their words about each treatment
- Zyrtec · Helped
Antihistamines help urinary frequency I have experienced, as well as GERD, hives and my other issues.
In context ↗ - Pepcid (famotidine) · Helped
I take famotidine, liquid gel Zyrtec and Xolair injections monthly which help so much.
In context ↗ - electrolyte drinks / Liquid IV · Helped
Electrolyte drinks once per day, high dose iron and b vitamins have helped immensely.
In context ↗ - Xolair · Helped a lot
Xolair has been working miracles, as well as low FODMAP/no sugar diet.
In context ↗ - naturopath care · Helped
An allergist and a naturopath have been helping me and I'm 90% better.
In context ↗ - daily walking, later intermittent jogging · Helped
I also walk 45-1 hr everyday which helps a lot.
In context ↗ - rifaximin · Helped a lot
I took rifaximin for that and it helped immensely paired with a low FODMAP diet which I still follow.
In context ↗ - low FODMAP diet · Helped
was treated with rifaximin and a low FODMAP diet ... I had a huge decrease in brain fog and big energy boost after treatment
In context ↗ - pacing · Not said
I still pace myself but I can get so much more in before I rest.
In context ↗ - high dose iron · Helped
high dose iron and b vitamins have helped immensely
In context ↗ - b vitamins · Helped
I take iron and b vitamins and feel better when I'm on them.
In context ↗ - high dose vitamin C · Not said
Also taking high dose vit c, d, iron, b vitamins and antihistamines but Xolair has driven most of my improvement.
In context ↗ - Zoloft · Helped
Zoloft also helps.
In context ↗ - time · Helped
with meds, hard work and time I'm probably 85% recovered
In context ↗
Approaches: H1 antihistamines · H2 blockers · POTS medication · SSRIs · Antibiotics · Diet · Exercise and activity · Biologics & antibodies · Supplements
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 | After |
|---|---|---|---|
| January 2022 | long COVID began 10 days after third Moderna booster; hives, low blood pressure, POTS, brain fogMy long covid started 10 days after my moderna booster.In context ↗ | Moderate | |
| early 2023 | got COVID; GI symptoms, GERD and SIBO startedA year later when I finally got covid my GI symptoms started, namely GERD, SIBO and the other symptoms stayed the same.In context ↗ | Moderate | |
| February 2024 | about 85% recovered and plateauedwith meds, hard work and time I'm probably 85% recovered and resigned that are probably plateau here for a whileIn context ↗ | Mild | Omalizumab / Xolair |
| April 2024 | crashed hard after a 4 day trip to the coastafter a 4 day trip to the coast I crashed hard, fever, anxiety, dizziness, etc.In context ↗ | Moderate | |
| June 2024 | 90% better, still sensitive to fragrance and heatAn allergist and a naturopath have been helping me and I'm 90% better.In context ↗ | Near normal | Omalizumab / Xolair |
Symptoms mentioned
Their words about their symptoms
- Mast cell (MCAS) & allergies
I have full MCAS now (elevated iG, tryptase, etc)
In context ↗ - POTS & dysautonomia
I find liquid IV helps my residual dizziness (after fixing iron deficiency).
In context ↗ - Heart symptoms & palpitations
It improveed my hives, fatigue, and low blood pressure/palpations.
In context ↗ - Brain fog
I had a huge decrease in brain fog and big energy boost after treatment.
In context ↗ - Gut problems
A year later when I finally got covid my GI symptoms started, namely GERD, SIBO
In context ↗ - Pain & fibromyalgia
I got hives/dermatographia, POTS, SIBO, joint pain, brain fog, fatigue, blurred vision, 9 months low grade fever, etc after 3rd moderna in jan '22.
In context ↗ - Anxiety & low mood
after a 4 day trip to the coast I crashed hard, fever, anxiety, dizziness, etc.
In context ↗ - Tinnitus
Also have tinnitus (and "floppy eustachian tube" which makes my ear clog).
In context ↗
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