Amy retweeted
A few days ago, I learned that @NatGeo quoted two (!) of my studies on autoimmunity and immunotherapies in #POTS and #LongCOVID in their recent article. I am honored! The study on autoimmunity in POTS is from over 10 years ago, but is clearly impactful.
nationalgeographic.com/healt…
Amy retweeted
I remember a time when senior colleagues were trying to convince me that POTS is about tachycardia and that these "other symptoms" of brain fog, headache and gastrointestinal symptoms are not from POTS, but from "comorbidities that are not POTS." 🤪 I also remember a time when senior colleagues were telling me that the vast majority of POTS patients improve or recover 5-7 years after diagnosis. Or that many patients improve just with salt, fluids and compression. Or that teens with POTS outgrow it. Or that you can exercise your way out of it because astronauts returning from space develop gravity-induced orthostatic intolerance, and then, poof, come out of it with exercise. 😇
Over the last 2 decades of doing this work, I learned that I can now form my own opinions and not listen to what others are telling me because I have thousands of patients to back me up as my experience. Obviously, referral bias is strong for all of us as each of us may see a slightly different patient population, but the patterns are fairly the same.
Which brings me to this point: our understanding of #POTS, and patients with #dysautonomia who do not meet diagnostic criteria for POTS, is very much evolving. Sure, we like to have simplicity and think in black-and-white terms, but it's not like that with complex disorders. POTS is complex and is no longer viewed how we viewed it 30 years ago. Failing to reflect new insights and trying to keep the disorder simple and "how we always knew it" is failing to advance our understanding of these disorders and their treatment.
Our recent review on POTS and other related disorders, which is still trending, highlights new insights and push for access to therapies that our patients cannot get.
tandfonline.com/doi/full/10.…
Amy retweeted
Good review on Postural Orthostatic Tachycardia Syndrome (POTS) today
@JAMA_current
jamanetwork.com/journals/jam…
Amy retweeted
Find out more: bit.ly/46Acdnl
#MyastheniaGravis
#MGCommunity #MyastheniaGravisNews #Bionews #MGSymptoms
Amy retweeted
Excellent POTS graphic from Dr. Satish Raj's POTS paper. Easy to share w clinicians or interested family/friends. POTS & dysautonomias are common in Sjogrens. #MedTwitter
#PosturalOrthostaticTachycardiaSyndrome (POTS) is a chronic autonomic disorder defined by orthostatic symptoms with a sustained heart rate increase within 10 minutes of standing or head-up tilt, without orthostatic hypotension.
🔗 ja.ma/4zzP3Kn
Amy retweeted
My guest on the latest episode of The Empowering Neurologist is Dr. Jonathan Fellows.
We explore the surprising truth about Alzheimer’s risk, from new blood-based biomarkers to the FDA-approved anti-amyloid drugs making headlines, and why even our most advanced treatments may not tell the full story when it comes to protecting your brain.
youtube.com/watch?v=dCBh5_MH…
Amy retweeted
Today is my first day at Feinstein Institutes at @NorthwellHealth. I am joining the bioelectronic medicine and neuroimmunology legend @KevinJTraceyMD to make transformative changes not just to science and medicine, but how biotech can be done in an integrated healthcare system.
Over the past 12 years, I’ve been lucky to work at the intersection of immunology, neuroscience, dermatology, allergy, and drug development inside major academic medical centers. That experience keeps revealing the same uncomfortable truth: our systems still struggle to support physician‑scientists who also build companies and turn ideas into products.
My next chapter is about fixing that from a health‑system + biotech vantage point - treating IP as core strategy, building real bridges from lab to clinic, and intentionally cultivating the “weird” careers: founders, C‑suite physician‑scientists, translational obsessives.
If you’re working on the next generation of biomedical ecosystems, I'd love to connect.
Amy retweeted
1/ 🚨 New study alert! 🚨
Can your gut #microbiota predict how you'll react to dietary emulsifiers? 🤔 Our lab's latest work explores this question using an in vitro microbiota model. 🌟 Published in @gutBMJ! 🧵👇
gut.bmj.com/content/early/20…
Amy retweeted
I highly urge folks to listen to this incredible and informative podcast episode. We NEED people appropriately dosed with doxy after a tick bite. In many Lyme-endemic areas in the northeast, almost all ticks now carry Lyme and it can spread mins-hrs, not days, after the bite
Amy retweeted
On the verge of bankruptcy, but after a year of combing the world for answers, the Xolair + Doxycycline + Qulipta + Celebrex + HistaQuel + Perrin Technique (i.e., glympathic drainage) combo is doing work. We are already coming off of my Topamax. Adding doxy to my mast cell regiment was the exact thing I needed. I am still struggling with cerebral hypoperfusion, but that's why we have the vascular and spine team.
I wanted to see if it could be done. I did this for everyone who has died trying. There's been many. I share my story for them and everyone who comes after me.
#millionsmissing
#solveME
Amy retweeted
"When you start treating hypermobility as the fifth vital sign, [the list of differentials] completely changes."
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"You know what's wild, as a GI doctor, there was things I were taught in fellowship that I would never see in my career, Median Arcuate Ligament Syndrome (MALS), Superior Mesenteric Artery Syndrome, Retrograde Cricopharyngeus Dysfunction (R-CPD), are zero [incidence]. Really, really rare, but once you start treating people with hypermobility, you realize that they aren't that rare anymore. In fact, they are quite common, and it completely changes the way you think.
In general, when we think "peptic ulcer disease", we think "h pylori". When we hear "bloating", we think "celiac disease, lactose tolerance." However, when treating hypermobility, the menu completely changes. You are thinking, "structural instability, motility issues, vascular compression,."
So yes, in general, these conditions are rare, but not in people with hypermobility, which makes me think we don't have a rare disease problem, we have a pattern recognition problem."
Amy retweeted
AS I HAVE BEEN SAYING, THE AUTONOMIC NERVOUS SYSTEM IS RESPONDING TO HYPERMOBILITY. If an infection triggered or worsen hypermobility, then "dysautonomia"
will follow suite to signal:
1.) "Hey, we are stressed about this neck instability, this joint dislocation, panic panic, please tighten your muscles"
2.) "Hey, your vascular compression and other blood vessel issues are now causing poor venous return, please overcompensate with increased heart rate to improve blood flow."
Mast cells are in connective tissue. They will degranulate more frequently as hypermobility worsens, causing a floodgate of inflammatory mast cell mediators to rush the brain and body. This will cause neuroinflammation, more dysautonomia.
If we stay stuck only thinking about the brain, then we miss out of most of the story.
Amy retweeted
When my colleagues and I became severely sick and disabled over the past year, I knew I had to spring into action to learn about the mechanisms behind Long COVID. Our doctors were not giving us answers because the risks and drivers behind persistent spike are poorly understood and underecognized in medicine--the perfect recipe for disaster, disease, and mortality.
I have been researching these mechanisms for the past year--perhaps my most impactful work in neurodevelopmental medicine was while on short-term disability leave while I try to determine how to stay alive and recover as a person with hypermobile Ehlers Danlos Syndrome (only diagnosed in December at age 36) and ADHD.
Hopefully my next poster is a research-informed protocol targeting all of the multisystem factors indicated in section 4!
Amy retweeted
Niche terms like "Fascial restrictions" hold people back from connecting to the much broader and more understood clinical concept of "adhesions" (or perineural fibrosis) and nerve entrapment. Same issue I have when people talk about "acquired tethered cord" vs "spinal adhesion".
What do you think ? Would you opt for Vagus Nerve Hydrosection ? Where they slowly drip dextrose + water around your Vagus Nerve to release it from fascial adhesion ?
Precision in autonomic medicine: A novel ultrasound-guided technique for simultaneous bilateral hydrodissection of the cervical sympathetic chain and vagus nerves is showing promise for post-COVID autonomic dysfunction.
Using 5% dextrose (D5W), the procedure mechanically releases nerves from fascial restrictions while providing metabolic support to inflamed neural tissue. D5W reduces reactive oxygen species and suppresses apoptosis in compromised nerves.
The technique uses a deep-to-superficial approach at the C6-C7 level. By targeting the prevertebral fascia and carotid sheath, clinicians modulate both the sympathetic and parasympathetic drivers of the autonomic nervous system.
In a study of ten patients, the procedure yielded zero complications. Clinical improvements were maintained at a 12-month follow-up, representing a critical advancement in treating post-viral syndromes through precise neuromodulation.
pmc.ncbi.nlm.nih.gov/article…
Amy retweeted
Today is a big final day. Teshia Zuniga with @RuchiMathurMD and @GabrielaGSLeite show that rheumatoid arthritis is associated with #sibo. Is there a link to autoimmune diseases or does SIBO fuel the fire? More work is needed. @MASTprogram #microbiome
Amy retweeted
This one is for the skeptical academics. We measured breath hydrogen sulfide and methane then immediately scope the patient and measured the same in duodenum and symptoms and microbiome. Guess what...breath correlates with duodenum and symptoms so gases are from small bowel!
Amy retweeted
Severe asthma coupled with a bladder pain disorder introduced me to a concept that changed (and saved) my life. The idea that chronic infections can fuel diseases considered to be idiopathic and/or purely autoimmune. #ChlamydiaPneumoniae #Lyme+
Amy retweeted
My initial Lyme Dx missed 2 persistent infections *Babesia microti & *Bartonella henselae. Ten years of treatment - missing puzzle pieces. I’m mostly well - but unresolved relapsing symptoms: fatigue, low-grade fevers, rib pain. Thx to researchers who won’t give up, I know why.
Amy retweeted
🔥 LYME FOUND IN HEART & PANCREAS of 30-year-old male tissue donor w history of Lyme! Why do blood tests miss over 50% of Lyme cases? It evades blood! It persists, like other pathogens, by hiding in organs & tissue where it’s hard to detect and kill!
YES. CHRONIC LYME IS REAL.
🚨 SHOCKING Lyme discovery on the new #Ticktective episode!
Our brilliant @LymeBiobank cofounder Liz Horn, PhD, reveals: Intact Lyme bacteria found in heart AND pancreas of a biobank tissue sample. How does Lyme persist? It migrates to tissue/ organs & evades detection! ⬇️
Amy retweeted
Every experiment needs to be logged in the blockchain and then released publicly upon submission. Manual custody of data is a relic of the past. Physical lab notebooks are dead. I can give specific examples of how recent events have exposed the absurdity of this. Manual peer review is performative. Closed peer review is no longer needed.
Can water intake prevent Alzheimer’s disease? No. This is fully AI-generated… but the data below could easily pass as real.
The new ChatGPT image model is truly impressive, but I think it poses a real risk for scientific integrity in future.
For example, I could just generate a dataset with a single prompt that appears to show something like water preventing Alzheimer’s disease. Ironically, we used to laugh at obvious “AI slop” (like those weird generated mice), but that’s changing pretty fast. If I were reviewing this fake figure today, I’m not sure I could reliably tell whether this figure is real or AI-generated?
The bigger issue is that the usual signals we rely on e.g., how realistic or plausible something looks are no longer enough.
I think we really need more comprehensive AI detection and, more importantly, stronger verification standards for scientific submissions going forward. We’ll probably also need better ways to digitize lab notebooks and ensure access to raw data, something closer to how code and version history are tracked...
