Long COVID
Severe → no benefitIll for 21 monthsNeeds ongoing treatment
Long COVID with POTS, MCAS and ME/CFS, barely functioning; no benefit
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 21 months
- Last post
- Oct 2026
In their words
- Condition: Long COVID
My LC has evolved from POTS to MCAS to persisting and worsening ME/CFS issues with small fiber nueropathy symptoms developing last year
In context ↗ - At worst: Severe
I am on an intensive protocol to barely function and LC symptoms continue to develop and worsen 1.75 years since my last infection. Even with my protocol, I still cant get MCAS/POTS/Neuro CNS/ME flares under control
In context ↗ - Now: No benefit
LC symptoms continue to develop and worsen 1.75 years since my last infection
In context ↗ - Began after: COVID
the last time I got covid, after having had the vaccine was horrific and catastrophic
In context ↗
Read from 6 of their posts and comments; links to the 6 this page draws on
Summary
Kite 28644 developed long COVID after a COVID infection about 1.75 years before their latest posts, after bad reactions to earlier boosters. Their illness evolved from POTS to MCAS to worsening ME/CFS with small fibre neuropathy; an intensive protocol lets them barely function. Microdosed semaglutide for blood sugar worsened fatigue and caused gastroparesis, while aspirin helped strikingly.
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What they tried
Also tried
aspirin· Helped a lotNAD injections· Helped a lotliposomal glutathione· HelpedNAC· HelpedL-Glutathione vials· Helpedmasseter botox· Helpedsemaglutide microdose· WorseVyvanse· WorseMOTS-C· Not saidResveratrol· Not saidfish oil· Not saidVitamin D· Not saidCoQ10· Not saidMultivitamin· Not saidgingko biloba· Not saidTrintellix· Not saidHRT· Not saidmethyl Vitamin B· Not saidcyclic nicotine patches· Not saidlevothyroxine· Not saidZyrtec/Claritin· Not saidZyrtec/Claritin· Not saidpropranolol· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- aspirin · Helped a lot
81 mg aspirin (energy boost and mental clarity has been unreal, but my bruising is awful)
In context ↗ - NAD injections · Helped a lot
NAD injections (500mg vial every 3-3.5 weeks) - Incredibly helpful
In context ↗ - semaglutide microdose · Worse
worsens fatigue, depression, lowers dopamine, so I take as little as I can
In context ↗ - MOTS-C · Not said
MOTS-C 10mg vial every other month
In context ↗ - fish oil · Not said
720 EPA fish oil
In context ↗ - Vitamin D · Not said
5,000 Vitamin D
In context ↗ - gingko biloba · Not said
500mg gingko biloba (have been on for years)
In context ↗ - Vyvanse · Worse
ADHD rx is less effective and also not well tolerated because of my post-Covid pots/Tachy/PEM
In context ↗ - Trintellix · Not said
Trintellix lower dose
In context ↗ - HRT · Not said
HRT (been on since early 30s- estradiol patch and bio progesterone)
In context ↗ - methyl Vitamin B · Not said
methyl Vitamin B
In context ↗ - cyclic nicotine patches · Not said
Cyclic nicotine patches (.5 of a 7mg patch per day) as needed (7-15 days per month)
In context ↗ - liposomal glutathione · Helped
720mg Liposomal Glutathione - great, but pretty costly
In context ↗ - levothyroxine · Not said
35 mcg levothyroxine
In context ↗ - Zyrtec/Claritin · Not said
Zyrtec/Claritin in pm as needed
In context ↗ - propranolol · Not said
Propranolol as needed
In context ↗ - NAC · Helped
NAC - helpful but costly considering the stack
In context ↗ - L-Glutathione vials · Helped
L-Glutathione vials - incredible
In context ↗ - masseter botox · Helped
It does improve when I have masseter botox oddly
In context ↗ - COVID vaccination as treatment · Not said
Ive had very bad reactions to Covid vaccines and boosters done after my initial having Covid
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2025 (about 1.75 years before October 2026) | COVID infection after prior vaccination, followed by long COVIDthe last time I got covid, after having had the vaccine was horrific and catastrophicIn context ↗ | Moderate |
| last winter (2025-26) | illness evolved from POTS to MCAS to worsening ME/CFS with small fibre neuropathyMy LC has evolved from POTS to MCAS to persisting and worsening ME/CFS issues with small fiber nueropathy symptoms developing last yearIn context ↗ | Moderate |
| 2026-10-13 | still barely functioning on an intensive protocol, symptoms continuing to worsenLC symptoms continue to develop and worsen 1.75 years since my last infectionIn context ↗ | Severe |
Adverse events
- Lisdexamfetamine (Vyvanse, Elvanse)“ADHD rx is less effective and also not well tolerated because of my post-Covid pots/Tachy/PEM” In context ↗ Side effects
- Semaglutide (Ozempic, Wegovy)“I micro-microdose (70-80mcg, 1-2x per week, 2 is hard) for blood sugar control (hypoinsulinemia) but still get wiped out and gastroparesis from the dose.” In context ↗ Made symptoms worse
- Semaglutide (Ozempic, Wegovy)“but still get wiped out and gastroparesis from the dose” In context ↗ Gut side effects
- Semaglutide (Ozempic, Wegovy)“.1-.15mg semaglutide microdose 2-5 times per month (worsens fatigue, depression, lowers dopamine, so I take as little as I can)” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“Ive had very bad reactions to Covid vaccines and boosters done after my initial having Covid” In context ↗ Side effects
- Aspirin“81 mg aspirin (energy boost and mental clarity has been unreal, but my bruising is awful)” In context ↗ Blood count problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
not well tolerated because of my post-Covid pots/Tachy/PEM
In context ↗ - POTS & dysautonomia
because of my post-Covid pots/Tachy/PEM
In context ↗ - Mast cell (MCAS) & allergies
I was dx'd with MCAS last winter
In context ↗ - Neuropathy & tingling
I realized I do have small fiber nueropathy, developed last Winter. I experience infraorbital fomen trigeminal nueralgia pain.
In context ↗