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
Canadian internet users may soon have their data handed to US authorities, with no Canadian judge involved and no Canadian court order required.
That is the core of what Bill C-22 enables. Canada is negotiating a cross-border data-sharing agreement with the US that lets American law enforcement request information about Canadians directly from service providers, bypassing Canadian judicial oversight entirely.
And it does not stop there. C-22 also lets the Minister of Public Safety order companies to build encryption backdoors, and mandates that telecom and messaging platforms retain your metadata for up to a year, regardless of whether you are under any suspicion.
Is this not a sovereignty problem? A country that cannot protect its own citizens' digital lives from foreign law enforcement is not in control of its internet.
The bill has passed the House and is now in the Senate. The window to push back is closing fast.
If you are Canadian, the Canadian Civil Liberties Association has a petition. Use it please before it's too late.
Stealthy Jess π¨π¦ π retweeted
Join @Dave_it_up and I for a conversation with @dbdugger about viral persistence in long Covid.
We will discuss what parallels we can draw from HIV/AIDS and why ME/CFS conflation has been catastrophic to proper research into long COVID.
This is a follow up to this space recorded in July 26 linked below.
Come and bring your questions!
Set a reminder for my upcoming Space!
xitter.cf/i/spaces/1rGmqpyβ¦
Stealthy Jess π¨π¦ π retweeted
This is disturbing, and threats of violence are unacceptable.
Last night on October 24th 2026, I witnessed the man spearheading the Experimental Edogawa Protocol in Japan that costs patients upward of $60K threatening to have people skinned alive.
I awoke this morning to the tweet being deleted.
I am curious if @MaryBowdenMD requested that Kevin take the tweet down.
In any case, if it was simply "lost" nobody needs to worry, as I have preserved it for obvious reasons.
Does the Edogawa protocol in Japan work?
Data for 31 patients shows significant improvement in cognitive, cardiovascular and musculoskeletal symptoms after treatment.
IMO, this is the best treatment option available for the severely injured who have exhausted all other options.
@NIHDirector_Jay
Stealthy Jess π¨π¦ π retweeted
This week, I received my first dose of Anktiva (N-803) for Long COVID as part of a clinical trial!
Feel free to ask me anything. Iβll be sharing updates on my progress and experience as time goes on!
@DrPatrick @Av8rLady @longcovidlabs @ImmunityBio @COVID19_disease
Replying to @J__Doh
There's a sewage treatment plant stuff drifts from sometimes. My husband said last night that he was smelling burning rotten wood like during wildfires. Surely there are no wildfires nearby right now? π€
Replying to @CarolTopalian @JackHadfield14
I have some ideas about why my combo works. I'm about to test it properly with Amatica's paired RNA samples and another trial with objective measurements. I don't want to go around saying it will work for everyone without better understanding what it's doing for me first.
Stealthy Jess π¨π¦ π retweeted
Since this post about wanting a CC partner is getting so much traction itβs time forβ¦.
A match-making thread!π§΅ π
If youβre searching for a CC partner, drop a comment or QT your general location & what youβre looking for π π
You can specify if youβre open to DMs or not
Replying to @VinoNStrosGal
Love your picks! This is a vibe for sure!
Replying to @tokifyi
Did not know it's from Toronto! Very cool!
Smelling something putrid in the High Park area tonight. My whole bedroom reeks with the window open.
Particulate counts ok. Very strange.
Replying to @JonJonAnimation @MaskedHottiee
π₯π₯π₯
Replying to @adic_9
Can't wait to get mine. Waiting for that Black Friday sale.















