angela mv/p 💁🏻‍♀️

🦠 personal #LongCOVID clinical research social acct | she.he.ella.èl| Los Angeles 🐦🙋🏻‍♀️ #NEISvoid #MCAS #hEDS #HyperPots #MECFS #UCTD #MigraineChat

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

#LongCovid #TeamClots - check this message to my hematologist from JULY 2020! I was asking about MICROCLOTS that weren’t detectable via DDimer (which I had deduced w lots of HyperPOTS-fueled PubMed research) cc ⁦@PutrinoLab⁩ ⁦@VirusesImmunity⁩ ⁦@resiapretorius⁩

[Ben Crump @AttorneyCrump]

24-year-old Hunter Adkins, who lived with muscular dystrophy, died after a fall while being assisted onto an Allegiant Air flight. A lawsuit alleges he was placed in a wheelchair without safety straps while boarding was rushed. What happened to Hunter raises serious concerns about how passengers with disabilities are treated when it matters most. https://t.co/xFpwxq5eUj

[Carol 🛌👩‍🦼😷 @TickedOffCodess]

Some people with very severe ME haven’t left their bedroom in years. Not months. Years. And their doctors have never once come to them. #MEawareness

[Carol 🛌👩‍🦼😷 @TickedOffCodess]

Very severe ME means lying in a dark room 24/7. No phone. No music. No visitors. Not because you’re resting. Because your nervous system can’t handle any of it. #MEawareness

[Patient-Led Research Collaborative @patientled]

We're thrilled to release the #LongCovid Treatment Guide! This is a collaboration with @RTHM_Health to help patients & providers explore treatment options together.

The guide focuses on 24 medications, but includes a few other interventions for breadth /1 https://t.co/xT6MQPte31

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Important point: patients are not voluntarily hyperventilating or breathing abnormally. Patients have dysfunctional breathing and hyperventilation BECAUSE of cardiac preload failure and cerebral hypoperfusion.
#MECFS #POTS #LongCOVID #Dysautonomia

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

@JackHadfield14 MCAS doc: cephalosporins (keflex, ceftriaxone), doxycycline, clindamycin better-tolerated than penicillins, bactrim. Fluoroquinolones (levaquin, ciprofloxacin) are toxic to mitochondria & also patients w hypermobility are at increased risk for tendonitis and tendon rupture

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

Anyway now I suspect that whenever my autoimmune disease flares (such as with vaccines), it by definition increases my MAS1 autoantibody activity which worsens my asthma! Fun!

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

Okay why did I just find the 2021 paper linking MAS1 receptors to asthma therapy.

I have been in STRUGGLE CITY w my asthma since my inaugural Novavax vaccine.

https://t.co/OvEF8N4p96

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

Just got my results - strong high for MAS which aligns w ongoing ortho hypertension & clotting propensity.

https://t.co/ieaQ6oQA8x

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

I have been in a low grade autoimmune flare which my daily HCQ has mostly managed classic symptoms for (mouth sores, fatigue) but which hasn't touched my asthma which is ANGRY, nor did it prevent my COVID toes from coming back.

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

@DiaryofaSickGrl Xolair helped even though none of my allergies were IgE

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

Does anyone w Long Covid get covid toes after their vaccines?

[Janet Dafoe @JanetDafoe]

Whitney & many of you rely on Medicaid. Congress is voting now to resolve to cut it by over a billion so they can reduce taxes on the https://t.co/YX7pB4wVr3 your congressperson NOW to object! Medicaid hotline:

[phone]

You enter your zipcode. It connects to YOUR rep.

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

@__WXMD yo UHC/Optum are requiring a new PA for the high dose Xolair I've been on (that they approved 5 months ago!). They did this with no notice, just denied my refill.

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

Anyone else getting NEW dose limits for #Xolair from @OptumRx or @UHC ?!

[Alice Wong 王美華 @SFdirewolf]

Housing stock is already low in cities like Los Angeles. Just think of how accessible housing will be even more scarce after the wildfires not to mention rents will be price gouged due to high demand

Everything is connected

#LAFirestorm2025 #LAFires

[Alice Wong 王美華 @SFdirewolf]

I am enraged that mutual aid groups are doing more than the govt. Disability justice teaches us that we are all interdependent and no one gets left behind.

We really are all we have. The govt will not save us.
#LAFires #LAFirestorm2025

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

@RuhoyMD The migraines alone…

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

@ThePOTSPostman exercise, but don't do or work too much.

they went to school for this.

[Zahra Khan (she/her) ♿️🦻🏼 زہرا خان @hellozeik]

I'm inventing a new term: medical ZEBRAFYING

It's when doctors treat something as a rare condition that's not actually rare & it is then used as a way to provide inadequate treatment/Accommodations

[angela mv/p 💁🏻‍♀️ @ItsAngInLA]

@ThePOTSPostman Mast cells