Long COVID
Severe → no benefitIll for 3.5 years
Long COVID with MCAS, steadily worse, hardly able to walk and still declining
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 3.5 years
- Last post
- Nov 2024
In their words
- Condition: Long COVID
I’ve lost 70 pounds and have significant muscle atrophy over the course of my 1.5 year battle with LC.
In context ↗ - At worst: Severe
I can hardly walk, let alone keep my head up.
In context ↗ - Now: No benefit
My body is too damaged to get better.
In context ↗ - Began after: COVID
I know covid permanently damaged my brain.
Read from 12 of their posts and comments; links to the 9 this page draws on
Summary
They developed long COVID after a Covid infection and, six months in, were diagnosed with MCAS. Over nearly four years they grew steadily worse: unable to tolerate any medication or supplement, they lost 70 pounds, developed muscle atrophy and could hardly walk or hold their head up. By late 2024 they had severe spine pain, tremors, dysautonomia and anaphylaxis to foods, and said they were still declining.
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What they tried
Also tried
Their words about each treatment
- 1st and 2nd gen antihistamines (including children’s Zyrtec) · Much worse
even one liquid drop of children’s Zyrtec gives me such an intense reaction that I had to go to the hospital
In context ↗ - supplements · Worse
Supplements give me the same reaction - I can’t take anything at all.
In context ↗ - acupuncture · Worse
Even acupuncture sends my body into a rage.
In context ↗ - massage · Worse
acupuncture and massage aggravate my body
In context ↗ - meditation · No change
meditation doesn’t help this
In context ↗ - brain training · Not said
Yes I have tried supplements, functional medicine, brain training, stellate ganglion block, physical therapy.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| onset | long COVID after a Covid infectionI’m unable to add new medications or modify the doses I was taking prior to being diagnosed with Covid.In context ↗ |
| January 2024 | steady decline: lost 70 pounds, muscle atrophy, could not tolerate any medicationI’ve lost 70 pounds and have significant muscle atrophy over the course of my 1.5 year battle with LC.In context ↗ |
| May 2024 | rapidly declining; could hardly walk or hold head upI have no muscle. I am pure skin and bones. I can hardly walk, let alone keep my head up.In context ↗ |
| November 2024 | still declining; spine pain, dysautonomia, tremors, anaphylaxis to all foodsAlmost 4 years of debilitating spine pain and being unable to stand without blacking out.In context ↗ |
Adverse events
- Cetirizine (Zyrtec)“even one liquid drop of children’s Zyrtec gives me such an intense reaction that I had to go to the hospital” In context ↗ ER visit
- Cetirizine (Zyrtec)“My reactions aren’t ‘allergic reactions’ - it’s more that my symptoms are exacerbated by 1000. My body tremors harder, my spine hurts more, sharp knives stabbing me all over, heart rate increases even more” In context ↗ Made symptoms worse
- “I’ve tried supplements (same reactions as the meds)” In context ↗ Made symptoms worse
- Acupuncture“acupuncture and massage aggravate my body” In context ↗ Made symptoms worse
- Massage“acupuncture and massage aggravate my body” In context ↗ Made symptoms worse
- Cetirizine (Zyrtec)“I’m unable to take any medications, even a children’s liquid drop of Zyrtec, without intense pain.” In context ↗ Made symptoms worse
- “I can’t even adjust the dosage of the medications I was taking prior to LC without a strong negative reaction.” In context ↗ Side effects
- “I’m unfortunately unable to even tolerate liquid vitamins.” In context ↗ Side effects
- “all it did was cause severe pain” In context ↗ Made symptoms worse
- “Yesterday I tried to reintroduce eggs, at the instruction of my MCAS doc, and went into anaphylaxis” In context ↗ Allergic reaction / anaphylaxis
- “I react with dysautonomia and intense pain to any med I take.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- Mast cell (MCAS) & allergies
I was diagnosed with MCAS about a year ago (6 months into LC)
In context ↗ - Pain & fibromyalgia
The pain is everywhere - but mostly my spine and down my legs.
In context ↗ - POTS & dysautonomia
being unable to stand without blacking out
In context ↗ - Heart symptoms & palpitations
heart rate increases even more
In context ↗ - Muscle weakness
I have no muscle. I am pure skin and bones. I can hardly walk, let alone keep my head up.
In context ↗ - Anxiety & low mood
I feel that I am going to die and I am terrified.
In context ↗