Long COVID with dysautonomia and worsening neurological symptoms, still no better
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill for
- 4 years
- Last post
- Mar 2024
In their words
- Condition: Long COVID
MRNA make my long covid symptoms worse, but I have personally done well with Novavax.
In context ↗ - At worst: Mild
I just had a few weeks I was able to jog a few days a week
In context ↗ - Now: No benefit
but the neurological symptoms only continue to get worse with time.
In context ↗ - Began after: COVID
worse than OG variant unvaccinated/ Delta
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Four years into long COVID, their dysautonomia and post-exertional malaise had eased slightly by early 2024, while neurological symptoms kept getting worse. Jogging too often brought a massive flare, and a 60-hour fast made them violently sick. A September 2022 Pfizer dose caused tachycardia and high blood pressure, and an October reinfection set them back. Novavax doses were tolerated.
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What they tried
Also tried
Their words about each treatment
- Pfizer mRNA vaccine · Worse
MRNA make my long covid symptoms worse ... Pzifer in Sept 22 gave me bad tachycardia and high blood pressure
- fasting · Helped
I did well with fasting after my last infection ... it actually helped get my heart under control
- Novavax · Helped
I have personally done well with Novavax
In context ↗ - jogging · Worse
I just had a few weeks I was able to jog a few days a week ... I eventually hit a massive flare that put me back down
In context ↗ - antihistamines · Not said
Supplements and antihistamines are not the sure-fire fixes people make them out to be.
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 3.8 years after onset: the story doesn’t say how ill they were before that. 4 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2020 | long COVID beganI've been going through the same for 4 yearsIn context ↗ | Not stated |
| September 2022 | Pfizer vaccine brought bad tachycardia and high blood pressurePzifer in Sept 22 gave me bad tachycardia and high blood pressureIn context ↗ | Not stated |
| October 2022 | reinfection, worse than earlier variantsthen horrible reinfection in October that was worse than OG variant unvaccinated/ DeltaIn context ↗ | Not stated |
| January 2024 | dysautonomia and PEM eased a littleDysautonomia is a little better, PEM is not quite as severe as it used to beIn context ↗ | Mild |
| early 2024 | massive flare after jogging too oftenI eventually hit a massive flare that put me back downIn context ↗ | Not stated |
| March 2024 | violently sick during a 60-hour fast, still recoveringI got violently sick at the 60 hour mark last time and had to stop short. Still recoveringIn context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“MRNA make my long covid symptoms worse” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Pzifer in Sept 22 gave me bad tachycardia and high blood pressure” In context ↗ Heart rhythm problems
- Extended water fasting (3+ days)“I woke up with my heart going crazy ... and puked.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
PEM is not quite as severe as it used to be
In context ↗ - POTS & dysautonomia
Dysautonomia is a little better
In context ↗ - Heart symptoms & palpitations
Pzifer in Sept 22 gave me bad tachycardia and high blood pressure
In context ↗