Replying to @longcovid_adri
Thanks for caring. It's mostly just increased pressure to do things for survival, keeping up, etc. with less rest than ever. My downtime now is mostly crashing in bed. It's that detached feeling, like you're always trying to not fade away...
Replying to @longcovidpnw
Same with spaces too. It seems to be getting worse the more "normal" I try to be during the day. I miss everyone & hanging out there.
Replying to @catladyactivist
Definitely burnout. Can't relate to my LC friends talking to me about new shows they're discovering, etc. All I can process is my palpitating heart :|
Replying to @longcovid_adri
It's definitely a pacing/capacity thing. When I did more aggressive rest, I could listen to a lot of (mostly familiar) music. Not even that as much anymore.
Replying to @CelesteDiWind
My parents banned videogames from me when I was a kid and I never got into them laterπ
Makes sense though!
Does anyone else find TV shows/movies/music/even podcasts to be too intense, often totally unbearable, especially after a demanding day?
They used to be my emotional outlets. Now, it's like there's this stress-related static in my body, and any external stimuli make it worse.
Stealthy Jess π¨π¦ π retweeted
Sweden is stepping away from mRNA for its national program. While the rest of the world is still being told itβs the only option.
Sweden is switching its national COVID vaccine campaign for 2027/28 to a protein-based shot instead of mRNA.
Theyβre calling it the first country to move away from the Pfizer/Moderna mRNA products for their national program.
Meanwhile the rest of the world is still being told mRNA is the gold standard and anyone questioning it is a conspiracy theorist.
Interesting timing.
When one country starts quietly stepping away and the rest keep pushing, maybe itβs worth asking why.
mynewsdesk.com/se/sanofi/preβ¦
Stealthy Jess π¨π¦ π retweeted
Interesting preprint: SARS-CoV-2 is evolving to become less recognisable to human B cells, while also escaping existing antibodies.
In new study, we show that SARS-CoV-2 has evolved decreased inherent antigenicity in humans, as quantified by a ~3-fold decrease in the number of naΓ―ve human B cells that can bind the spike RBD.
doi.org/10.64898/2026.10.15.β¦
Stealthy Jess π¨π¦ π retweeted
BREAKING: Quebec will switch to standard time this weekend, PERMANENTLY.
Standard time, also known as natural time, is the best option for our eating habits and health. Good move. Atlantic Canada will likely follow, leaving Ontario as the only province still changing its clocks.
SYLVAIN CHARLEBOIS: When the clocks change, food habits follow torontosun.com/opinion/columβ¦
Stealthy Jess π¨π¦ π retweeted
π¨ All the hard work paid off!!!
The following 6 peptides will be able to be legally prescribed in the United States on Friday, October 30th:
BPC-157
TB-500
MOTS-c
Epithalon
Semax
KPV
The future of medicine is here!!!
@StackHealth @peptavo @peptidemedicine
Replying to @BetterS460
I know I go deep and probably trigger some people. If me being around makes them uncomfortable, they're probably better off keeping me blocked. Everyone has their own reasons I guess π€·
I should be happy that people in my life are uplifting me, seeing potential, and banking on my success. Honestly, I'm terrified.
How can I learn to trust anything and commit to taking on "normal" when my body still keeps letting me down?
Replying to @pramanyaguda @daytonaio
I would love one for deep medical/research work (materials for my own self-trial). I go between Canada and the US.
Replying to @RidgeOcean
That's really neat. I'm pretty burnt out and have a plate full of projects, between crashing out in bed and working. I probably won't be able to tackle anything like this anytime soon.
I'm just curious though, how do you validate a DIY sensor like this?
The inaccuracy piece is why I put this on the backburner.
Replying to @PatchesHQ
Oh damn. I'm just curious if people still get it even if they never touched Grok bot (like me). Which would mean it should go away if you stop using it?
Replying to @PatchesHQ
I don't see it showing in my chat? How do people even get that? And don't you have an option to decline?
Stealthy Jess π¨π¦ π retweeted
Do you as a #LongCovid patient experience paradoxical reactions to meds? A compromised blood brain barrier could be behind it. Another excellent thread by Dara explains why, as well as sharing her personal, scary experience with exactly this.
The 1/4 Dose "Stress Test":
What Happens When a Peripheral Med Crosses a Broken Barrier
Yesterday
π¦Έ I finally built up the courage to trial Midodrine for dysautonomia. I made sure I had extra home support, and because itβs fast-acting, I knew that if it went badly, it would at least be temporary. I took just a quarter of a single pill.
At first, there were small, promising glimmers:
π β‘ My facial muscles were working better.
π π I felt a moderate bump in energy.
π πββοΈ I could reach over my head even while standing without immediately getting symptomatic.
When Midodrine stays strictly where it belongs, in the peripheral bloodstream, it tightens blood vessels and helps get blood back up to the heart and brain.
But for me, the bad side effects outnumbered the positives at least two to one.
The Central Nervous System Cascade:
π«Because my Blood-Brain Barrier (BBB) is hyper permeable, the drug didn't stay in my peripheral circulation.
It leaked directly into my central nervous system, triggering a severe hyper adrenergic surge:
π 𫨠Tremors & Internal Vibrations:
An intense, systemic humming that my support person could physically feel in my chest, legs, and arms just by laying her hands on me.
π π Sensory Overload: Hyperacusis where I could hear "everything, everywhere, all at once," paired with extreme skin sensitivity and total loss of appetite.
πβ‘ Neuropathic Spread:
My neuropathy amped up significantly and began rolling upward from my legs into my pelvis.
π π« Cardiovascular Dysregulation: My heart rate spiked dramatically while doing almost nothing to help my blood pressure.
π π§ Cognitive Shutdown:
I completely lost the ability to think straight or hold a thought.
Today, the after-effects feel like I ran a marathon.
It was reminiscent of my first tilt table test with atropine, the time they had to bring out the crash cart to revive me.
Thank goodness I was cautious enough to start with a fraction of a dose.
The Biology:
Why This Proves BBB Disruption & Elevated MMP-9
π‘οΈMidodrine is a targeted alpha-1 adrenergic agonist. In a healthy system, an intact blood-brain barrier keeps it in the arms, legs, and torso to constrict blood vessels.
However, when you have elevated MMP-9 (matrix metalloproteinase-9), an enzyme that actively breaks down the tight junction proteins protecting the brain, that selective wall is compromised πͺ.
βοΈSC2 does this. This has been shown in many studies since 2020.
When Midodrine crosses a disrupted BBB:
π It binds directly to central alpha-1 receptors in autonomic control centers like the brainstem.
π Instead of quietly tightening leg veins, it signals the brain to fire off an intense, systemic "fight-or-flight" sympathetic surge β‘.
π This central activation amplifies motor tremors, spikes heart rate, and drives severe sensory and neuropathic flares.
Ironically, this trial acted as an unintended "stress test" for my central nervous system.
It directly validates my elevated MMP-9 levels: my BBB is disrupted.
Itβs a clear reminder that we cannot expect peripheral vascular medications to work as designed if the barrier protecting the brain is actively leaking.
This is why tests and proper diagnostics are so very important for patients with LC.
π₯We are being given medications that should NOT be crossing into the brain. Major problems can occur wit many medications. π§ π₯
#Dysautonomia
#POTS
#LongCOVID
#TestsTreatmentsNow













