Neurologist Mom
@NeurologistMom
A neurologist, M.D., mother of a 17-year-old with #NeuroSjogrens #AutoimmuneEncephalopathy triggered by SARS-CoV-2 ⚠️ Occasionally blocks energy drains.
I have devoted my entire life and career to advocating on behalf of Alzheimer's patients, their families, and their caregivers. I've managed treatment plans for thousands of patients and conducted hundreds of social initiatives. Now I am the mother of a 14-year-old with…
Neurology is so cool until they hit a condition they have no idea about. Then boom, gaslighting mode activated. PS: Of course there are exceptions. Cannot handle a fight with my colleagues now.
Neurology is so cool: A 61 year old man comes in for another opinion on his diagnosis of ALS Several years of progressive upper limb weakness Exam: upper limb fasciculations, brisk lower limb reflexes One look at the C-spine MR and you know it’s not ALS. What’s going on?
We were falsely accused of FII, 9 months of Child Protection, while Isla wasn't removed, the damage was immense, physically & emotionally. Isla lost all trust in professionals. We were seen as difficult and as stopping Isla receiving medical treatment as we wouldn't agree to GET.
TW: New Sunday Times investigation hundreds of parents, falsely accused of Fabricated or Induced Illness when seeking care for their children - abuse allegations, risk losing access, and waiting months to be cleared— some children worsened and even died. archive.ph/2025.07.19-180…
You've never seen anything like this before. Come see for yourself!
Want to see the universe within? Join us at MIT where you'll get to peak under our microscopes at the bacteria that cause #Lyme disease and even get to view YOUR own capillaries to see a bit of what we look at in our clinical study MAESTRO. July 24th RSVP: mitnano.mit.edu/events/studion…
I can point to tests that show the profound physiological nature of my child’s illness. So could the clinicians who tried to take her away from us. But still they tried, at great cost to my daughter, and our family. We are a pattern, not an anomaly. There is unthinkable…
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
How many more deaths do you need before you stop accusing people of faking their illnesses? “I was accused of fabricating Maeve’s symptoms right up to the point in which she died.”
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
“Would you diagnose breast cancer or AIDS with tests that miss more than 50% of cases?! ABSOLUTELY NOT.” But that’s what we’ve been doing for 40+ years with Lyme⬇️⬇️⬇️
🚨 “Would you diagnose breast cancer or AIDS with tests that miss more than 50% of cases?! ABSOLUTELY NOT.” But that’s what we’ve been doing for 40+ years w Lyme (aka Borrelia). Find out why. And hear BIG NEWS 🎉 on the Lyme+ front w a new FDA-approved test ⬇️
Happening on Thursday at MIT! Come see how beautiful our research is and learn more about our MAESTRO study!
Want to see the universe within? Join us at MIT where you'll get to peak under our microscopes at the bacteria that cause #Lyme disease and even get to view YOUR own capillaries to see a bit of what we look at in our clinical study MAESTRO. July 24th RSVP: mitnano.mit.edu/events/studion…
💙 How care is delivered matters. Clayton Powers, DPT, shows how small changes like dimmed lights, quiet voices, and empathy, can transform care for ME/CFS & Long COVID. Compassion is a clinical tool. Use it. 🎥 Watch: bit.ly/46glQZ2 #MECFS #LongCOVID @uofuhealth
We are in the midst of writing a paper on this right now! We see that Borrelia are nestled IN the collagen fibers! And if you want to come see for yourself we're having a special event gallery night this Thursday at MIT x.com/ImmunoFever/st…
I'm so PROUD of my lab making waves at #FOCIS2025!!! @graceloes gave an incredible talk on Borrelia causing trouble in the connective tissue and Mita got poster of merit!!!
🔥 “The only way to get borrelia [aka Lyme] to grow was to add collagen to the test tube…” 👀 ✅Ehlers-Danlos ✅Interstitial cystitis ✅diseases of arteries, ❤️, skin Lyme, Bartonella, & the collagen connection 💣 A MUST-SEE INTERVIEW W/ Dr. Joe Burrascano 🔗 👇🏼
I really am sick of this!
New: the hundreds of parents being investigated for child abuse when they seek help or diagnosis for their sick children thetimes.com/article/720f66…
In the garden in the quiet & pouring rain on another sad day. Thinking of all #pwME, you all fight so hard for belief & care & for change. Really shouldn't be this way. #GreatestMEdicalScandal
‼️ CHRONIC LYME IN WSJ TODAY: “Frankly, our work has shown that it’s real,” said Dr. John Aucott, dir of the Johns Hopkins Lyme Disease Clinical Research Center, who has studied the condition for two decades. “What we’re trying to do is measure everything [in our study on…
Thank you @Brabbott42 for this wonderful piece, and highlighting what the MAESTRO study means to our participants! I love that my quote was about HOPE. I KNOW that this is a solvable problem. We need to work together to fix it! wsj.com/health/chronic…
This is such an incredible effort! We need the same for the #IACI @VirusesImmunity @PutrinoLab @MBVanElzakker @OxMEDiscovery @resiapretorius @BrodinPetter @HannaMOllila @NeurologistMom @ahandvanish @mhornig @LaelYonker @DaniBeckman @michelle_monje @DALauffenburger @dysclinic
While UK Biobank enabled access to population-based proteomics at scale, most omics studies in disease-focused cohorts still suffer from small sample sizes. The Global Neurodegeneration Proteomics Consortium brought together 35,000 serum, plasma, and CSF samples from…
“since COVID began Ive seen a steady increase in children taken away due to false allegations! W/MANY landing w/neglectful/abusive fosters”
This is horrible!😔 While there 100% ARE neglected/abused children who NEED rescue & protection from their parents/caregiver or family member…since COVID began Ive seen a steady increase in children taken away due to false allegations! W/MANY landing w/neglectful/abusive fosters
I found this very informative as a result of my LDN experience survey on LC patients. So far, there are 129 participants. Among those who benefited from LDN, the most improved symptoms are: 1.Pain (35.7%) 2.Fatigue (34.1%) 3.Brain fog (34.1%)
Listen! Isla is gone. She is in heaven now. She was not believed and was placed under a Child “Protection” Plan for 9 months, carrying the distress of seeing her own caring family falsely accused. She is not the only case, and she will not be the last. To those who caused this,…
Refusal to acknowledge Isla's symptoms, refusal to provide home tuition. Accusations of prefabricated illness (couldn't even get the term right), 9 months of Isla being on a Child Protection plan, 0 support, 0 compassion and hardly any learning.
🔥 “This whole CRAZY dogma that ticks have to be attached for 24-48 hours [to transmit diseases] is absolutely NOT the case.” Dr. Joe Burrascano presents the shocking *actual* data on Lyme+ transmission 👀. 🚨 A-must-share-with-doctors episode! 🔗 in next tweet.
A fascinating new study by Vishnu Shankar et al. @stanfordimmuno shows that oxidative stress is a shared characteristic of ME/CFS and Long COVID in lymphocytes due to inability to clear reactive oxygen species. This happens in sex-specific manner. (1/) pnas.org/doi/abs/10.107…