Friday, July 4, 2025

Boquete: Answer to Prayers!



According to old Chinese advice, it is wise never to discuss politics or religion even amongst best friends.  

Religious belief can often blur judgment in the wisest of people.

Forty plus years ago, a patient of mine was unconscious for 23 days and it was mother's belief that it was through prayer that her daughter was saved. I did not argue with her then.

But perhaps God works through his people in his own way. Discoveries in Medicine should therefore enhance our faith rather than the other way round.

It took nearly 30 years for the real answer to her prayers to really emerge.

 ©2012 Am Ang Zhang
I was staying at our resort in Boquete and was having dinner with three friends all of them with medical connections. One was in hospital administration and one a nurse. The husband of the nurse was a pharmacist. Somehow the conversation drifted into medical topics and knowing that I am a Child Psychiatrist the pharmacist started talking about his nephew who was nearly sent to a mental institution as he suffers from catatonia and doctors eventually diagnosed schizophrenia and put him on antipsychotics. Luckily the catatonic symptom probably saved him as some bright young thing just read the book Brain On Fire and gave him the Clock Test. That led to the NMDAR antibody testing that proved positive. He responded well to the treatment regime that has been developed and is off all antipsychotic medication.

My Teratoma patient was lucky as she belong to that group that improved without further treatment once the Teratoma was removed. She eventually had a baby.


The Power of Prayers & Teratoma: Brain & NMDA!


Anti-NMDA Receptor Encephalitis

NEW ORLEANS — A mysterious, difficult-to-diagnose, and potentially deadly disease that was only recently discovered can be controlled most effectively if treatment is started within the first month that symptoms occur, according to a new report by researchers from the Perelman School of Medicine at the University of Pennsylvania. The researchers analyzed 565 cases of this recently discovered paraneoplastic condition, called Anti-NMDA Receptor Encephalitis, and determined that if initial treatments fail, second-line therapy significantly improves outcomes compared with repeating treatments or no additional treatments (76 percent versus 55 percent). The research is being presented at the American Academy of Neurology's 64th Annual Meeting in New Orleans.

565 cases! Not so rare!

The condition occurs most frequently in women (81 percent of cases), and predominately in younger people (36 percent of cases occurring in people under 18 years of age, the average age is 19). Symptoms range from psychiatric symptoms, memory issues, speech disorders, seizures, involuntary movements, to decreased levels of consciousness and breathing. Within the first month, movement disorders were more frequent in children, while memory problems and decreased breathing predominated in adults.

My patient was under 18 and presented with catatonia symptoms. She later lose consciousness and was ventilated.

"Our study establishes the first treatment guidelines for NMDA-receptor encephalitis, based on data from a large group of patients, experience using different types of treatment, and extensive long-term follow-up," said lead author Maarten TitulaerMD, PhD, clinical research fellow in Neuro-oncology and Immunology in the Perelman School of Medicine at the University of Pennsylvania. "In addition, the study provides an important update on the spectrum of symptoms, frequency of tumor association, and the need of prolonged rehabilitation in which multidisciplinary teams including neurologists, pediatricians, psychiatrists, behavioral rehabilitation, and others, should be involved."

The disease was first characterized by Penn's Josep Dalmau, MD, PhD, adjunct professor of Neurology, and David R. Lynch, MD, PhD, associate professor of Neurology and Pediatrics, in Annals of Neurology in 2007. One year later, the same investigators in collaboration with Rita Balice-Gordon, PhD, professor of Neuroscience, characterized the main syndrome and provided preliminary evidence that the antibodies have a pathogenic effect on the NR1 subunit of the NMDA receptor in the Lancet Neurology in December 2008. The disease can be diagnosed using a test developed at the University of Pennsylvania and currently available worldwide. With appropriate treatment, almost 80 percent of patients improve well and, with a recovery process that may take many months and years, can fully recover.

Teratoma: finally!

In earlier reports, 59 percent of patients had tumors, most commonly ovarian teratoma, but in the latest update, 54 percent of women over 12 years had tumors, and only six percent of girls under 12 years old had ovarian teratomas. In addition, relapses were noted in 13 percent of patients, 78 percent of the relapses occurred in patients without teratomas.
As Anti-NMDA Receptor Encephalitis, the most common and best characterized antibody-mediated encephalitis, becomes better understood, quicker diagnosis and early treatment can improve outcomes for this severe disease.
The study was presented in a plenary session on Wednesday, April 25, 2012 ET at 9:35 AM at the American Academy of Neurology's annual meeting.
[PL01.001] Clinical Features, Treatment, and Outcome of 500 Patients with Anti-NMDA Receptor Encephalitis

Anti-NMDA-receptor encephalitis: case series and analysis of the effects of antibodies

Of 100 patients with anti-NMDA-receptor encephalitis, a disorder that associates with antibodies against the NR1 subunit of the receptor, many were initially seen by psychiatrists or admitted to psychiatric centres but subsequently developed seizures, decline of consciousness, and complex symptoms requiring multidisciplinary care. While poorly responsive or in a catatonic-like state, 93 patients developed hypoventilation, autonomic imbalance, or abnormal movements, all overlapping in 52 patients. 59% of patients had a tumour, most commonly ovarian teratoma. Despite the severity of the disorder, 75 patients recovered and 25 had severe deficits or died.

Who knows, I would not be surprised if Dr. Dalmau is eventually awarded the Nobel.

Related paper:

Anti-NMDA Receptor Encephalitis: Diagnosis, Psychiatric Presentation, and Treatment


Chapter 29  The Power of Prayers

The following is extracted from The Cockroach Catcher: Chapter 29 The Power of Prayers.

According to old Chinese advice, it is wise never to discuss politics or religion even amongst best friends.  

         Religious belief can often blur judgement in the wisest of people. In psychiatry it is sometimes not easy. This is particularly true in cases of florid psychosis, which often presents with symptoms of hallucination, delusion and even vision.

         I remember my early days of psychiatry in a mental hospital in Hong Kong. Yes, it was the days of 2000-bed hospitals. Yes, it was the days of Medical Superintendents who had supreme power and all doctors of whatever rank and experience were Mental Health Officers with special authority to sign papers for compulsory admissions. The forensic unit was contained within the same complex.         Those were the days when we encountered psychosis in the raw so to speak. All the colony’s really mad people were admitted to this one place set in the furthest corner of the colony. In our year seven of us decided without much discussion that we all wanted to go into psychiatry. That was over 10% and all had quite idealistic reasons. It was perhaps a bit of a disappointment to our parents that we did not pursue a more conventional specialty that might provide us with more status and financial reward. Then there was the fear of contamination that somehow one might become mad too. Recent day medical students are said to shy away from psychiatry for these same reasons.         Education seems to have little effect on superstition.
                                     ......................................….read the full Chapter: HERE

Brain on Fire   



Scientific America: https://www.scientificamerican.com/article/brain-on-fire-my-month-of/

Tuesday, July 1, 2025

The Cockroach Catcher II: Attempted Living.---The Answer---Brain on Fire!

 

My mysterious lost month of madness

I was a happy 24-year-old suddenly stricken by paranoia & seizures. Was I going crazy?



Teratoma: One Patient One Disease?

Hospital Medicine: Pride & World Class Costs!

Nov 29, 2012

·                                 By SUSANNAH CAHALAN
·                                 Last Updated: 6:01 AM, October 4, 2009
·                                 Posted: 3:49 AM, October 4, 2009

IT was a cold March day as I walked to work from my Hell's Kitchen studio. The weather was clear, people were out in their coats and scarves, but something did not feel right. The sky was so blue, it hurt my eyes. The billboards in Times Square assaulted me with violent reds, yellows and purples. It was like the world had become brighter, louder, more painful.
When I got to the Midtown newsroom of the New York Post, where I was a year into my first full-time reporting job, I asked a friend, "Have you ever not felt like yourself? Have you ever felt completely off?"
"Sure," she laughed. "Of course. I hardly ever feel like myself."
I laughed, too, but inside I worried. Lately, there had been more and more days like this. I had started to feel numb on the left side of my body. My arm and leg on that side tingled. Until recently, I had been a healthy 24-year-old, happily starting a career in the Big Apple with a new boyfriend. Now I spent sleepless hours wondering what was happening to my body and my mind.
Then, one Friday at my desk, I cracked.
I had just finished an interview, was starting to write, and for no reason I began crying hysterically. Co-workers gathered, wondering what was wrong. Moments later, I brushed it all off, and skipped down an office hall, giddy with excitement.
Later, at home, I panicked. Was I going mad? Was I mentally ill?
I contacted a neurologist. He sent me to a litany of tests, including two MRIs. Nothing.
"Maybe it's mono," he suggested. "Or a virus."
He promised to follow up with more tests. In the meantime, I curled up with my boyfriend to watch the PBS show "Spain -- On the Road Again." I remember thinking how much I disliked Gwyneth Paltrow. Then, he would tell me later, I started grinding my teeth, moaning and biting my tongue, until I finally passed out.
It was my first seizure. And the last thing I would remember for a month.
THROUGH interviews with family, my boyfriend and friends, I'm able to cobble together the darkest moments of my life. My father kept notes in a spiral notebook, details of what was happening that he could pass along to my mom as they took shifts caring for me.
From my boyfriend, I know that I awoke after the seizure at St. Luke's Hospital next to a puking man.
Doctors ordered a CAT scan that came up clean -- but my behavior was becoming increasingly bizarre.
"I'm dying of melanoma," I told my boyfriend. (I had been diagnosed with the skin cancer five years ago and was convinced that was the cause of my seizure.) I started ranting about suing the doctors and believed that they were out to get me.
But even after the seizure and the paranoid delusions, the neurologist didn't seem worried.
"It's probably alcohol withdrawal," he told my stunned mother and me. He was convinced I was an alcoholic; I barely drank.
My family packed up my clothes and took me to my mother's home in New Jersey, where I continued to deteriorate.
I stopped sleeping. Refused to eat. Paced the halls. Couldn't control my rambling thoughts, and ranted to my mother. I convinced myself that I was bipolar and that I was having a nervous breakdown.
Then I had a second seizure. Blood and foam spurted out of my mouth onto the Oriental rug in my family room.
Overwhelmed by my erratic behavior, my mom dropped me off at my dad's house in Brooklyn Heights for one night before my doctor's appointment. My paranoid delusions got worse. I refused to sleep and started banging on the locked door, screaming, "Get me out of here!" I imagined that my father had murdered his wife.
The next day, my mother, stepfather and boyfriend took me back to the neurologist for an EEG, which records the electrical activity of the brain. On the ride there, I opened up the car door and tried to jump out. My boyfriend held me down and my stepfather child-locked the car. I screamed hysterically until we got to the doctor.
Horrified by my increasing paranoia, and despite my neurologist's hesitations, my mom and stepfather took me immediately to the hospital. They demanded that I not be placed in a psych ward.
There I had my third grand mal seizure while waiting for a hospital bed, and was whisked up to the epilepsy floor of New York University's Medical Center.
For the first three days, I shared a room with three other people, mostly suffering from epileptic seizures.
Technicians glued EEG wires to my head, which snaked into a child's pink backpack on the side of my bed. I was monitored 24/7 by two video cameras mounted on the ceiling.
Two times, I successfully ripped the electrodes off my head, tugged at my IV as blood erupted from my veins, and ran shrieking down the halls, trying to find an exit. Nurses tackled me and stuck me with a sedative. An imposing Jamaican nurse even sat watch with me for 24 hours so that I couldn't escape again.
I had to wear an orange wristband that said "flight risk."
"The physical discomfort of not being able to shower or wash her hair coupled with the fact that she was tethered electronically to a monitor started to take its toll," my dad wrote in his notebook. "She told me she was dying a little bit every day. I told her to trust me and I would get her out, but we had to find out what was wrong with her. She said, no -- get me out now."
It's hard for me to hear about the things that I believed during my madness. When I turned on the TV, I imagined I was on the news and that satellite trucks from all the major networks were camped out outside of my hospital room waiting to interview me.
I imagined the woman beside me was tape-recording my conversations and talking about me in Spanish to her family. I was convinced that I could speak Spanish and interpret her words.
Multiple times a day, residents, doctors and nurses would ask me: "What day is it? Where are you? What's your name?" Though it would take me over a minute to answer, I did so correctly, albeit a little pissed off.
One night a nurse came by to do my vitals and ask the inane questions in the middle of the night. I had finally fallen asleep and was less than pleased. As she bent down to take my blood pressure -- which was spiking due to the illness -- I wound up and slapped her across her chest. She gasped in disbelief and fear.
TWO weeks pass. Every day a new doctor comes to visit. There are internists, infec tious-disease doctors, immune-system specialists, psychiatrists, psychopharmacologists. They send me to MRIs, sonograms, X-rays, CAT scans, PET scans, multitudes of blood tests. All come back negative. No one could give my parents an answer.
My dad came in the mornings, sat with me and fed me breakfast. My mom would come in the afternoons, and my boyfriend came in the evenings and stayed with me until I fell asleep. They never missed a day.
Two comforts for me were apples -- which I inexplicably craved, eating three a day -- and my boyfriend's iPod, on which he made a mix of mostly Ryan Adams tunes, which helped me sleep through the night.
My father prayed. "I would walk across town on 33rd Street to catch the subway on Park Avenue South. There is a chapel between 1st and 2nd Avenue that is dedicated to Jesus and Mary. Each time I walked by I begged God to help Susannah," he wrote. "I even tried to make a deal. I asked God to take me right there on the spot or do anything he wanted with me if only Susannah could be helped."
The paranoid delusions started to wane as the medications, anti-anxiety drugs Geodon and Ativan, increased. But I was losing the battle. I could no longer read. My tongue curled, making it hard to speak. I had difficulty swallowing. It took me a whole minute to answer the simplest questions.
Day after day passed with no answer. I became more withdrawn. I found it hard to walk with my father and mother around the hospital floor. Close friends were alarmed at my passive and incoherent state. Doctors secretly feared that they were losing me.
The head doctors started speaking of a mythical miracle man named Dr. Souhel Najjar. "He would find out what it is," they would say. They even nicknamed him "Dr. House."
My mom requested that we meet this Najjar in person. And after two spinal taps came back with high white blood cell counts -- an abnormal occurrence that signifies brain swelling -- the case was officially passed on to Najjar, a Syrian-born neurologist, neuro-pathologist and epileptologist at NYU Medical Center.
When he came to speak with us, my family was buoyed by his confidence.
He grasped my hands and said, "I'm going to find out what this is and fix it."
Then he handed me a pencil and a piece of paper.
"Draw a clock," he said.
I grasped the pencil and made a circle. Feeling a little confused and put on the spot, I drew in the clock face.
My mother and father gasped.
All the numbers were written on the right side of the clock face, and no numbers were on the left side.
NAJJAR now had five clues as to what was overtaking me: the seizures, the catatonia, the high blood pressure, the high white blood cell count in my spinal taps and the bizarre clock. It was preliminary proof that the right side of my brain (which controls the left side of the body) was inflamed. He believed it was some sort of autoimmune encephalitis, or the swelling of the brain caused by an attack by rogue antibodies.
He decided to send my blood and spinal fluid to a well-respected neuro-oncologist from the University of Pennsylvania named Dr. Josep Dalmau to test to see if rare antibodies were present.
But we had to wait two weeks for the results.
In the meantime, a brain biopsy would be necessary, Najjar said. They would need to cut out a piece of my temporal lobe, my horrified parents learned.
"I can remember being alone in her room when she began to cry," my dad writes in his diary. "I went over to her on the bed and hugged her when I began to cry. Next thing I knew, Susannah was laughing. I asked why. She told me it was the first time she ever saw me cry and I must have looked pathetic."
The next day, I was taken to ICU for surgery. I remember opening my eyes as they sliced into my brain and saying something like, "I'm awake."
The anesthesiologist looked at me and said, "Oh, s- - -."
My mom thinks it was just another hallucination. It seemed so real to me, but I couldn't trust my own mind.
After the surgery, the blood work and spinal fluid came back positive for rare antibodies called anti-N-methyl-D-aspartic acid receptor, or anti-NMDAR encephalitis. The name signifies that the receptors in the frontal lobe, responsible for cognitive reasoning, and the limbic system, or the emotional center of the brain, are under assault by the immune system. My body was attacking my brain.
Penn's Dr. Dalmau had discovered these antibodies in 2003. Until then, people suffering from my madness were misdiagnosed, likely ending up in mental hospitals, if not dead. Experts aren't sure what causes it, though they believe it's genetic, not environmental.
According to his studies, the median age for the disease is 20. The youngest is 21 months. About 75 percent of those affected by it are women. All show forms of psychotic behavior, some show signs of catatonia. About 80 percent of patients have seizures and 70 percent of patients see psychiatrists before any other doctors, according to Najjar.
Najjar estimates that nearly 90 percent of those suffering from autoimmune encephalitis go undiagnosed.
"It's a death sentence when you're still alive," Najjar told me. "Many are wasting away in a psych ward or a nursing home."
I was the first person in NYU Medical Center's history to be diagnosed with NMDAR encephalitis.
Najjar wasted no time. He immediately hooked me up to an IV and started the treatments.
First came the intravenous immune globulin, which reduces inflammation of the brain. Then came high levels of steroids, which also reduce inflammation. And finally he hooked me up to a plasmapheresis machine, which flushes out the harmful antibodies from your system, through an IV in your neck.
The initial treatment took about a week, until I was well enough to be released from the hospital. Six months later, I'm still taking steroids, but I'm back at work, back at home, seeing colors clearly and not breaking down at my desk.
At a medical conference last week at NYU, Najjar presented my case and the wide spectrum of autoimmune encephalitis disorders, saying that I was back to "normal." A friend and co-worker laughed. "You're better, but you're not normal," she said.
My father reflected on my time in the hospital. "Najjar told me she could have easily ended up in a nursing home for the rest of her life. Najjar thought she was extremely lucky. He was saying, with time, she could get back 90 percent of her cognitive abilities," he wrote.
I'm happy to say that today I'm at 100 percent, and marveling at the lost month of my life, paging through my father's diary like I'm reading about a stranger.
"All I knew was that she was alive, and her spirit was intact," he wrote at the end, words that bring me to tears. "We had more hospital stays for treatments, doctor visits, and lots of medications to deal with, but my baby was on the way home."

AMAZON-UK    The Cockroach Catcher II: Attempted Living


Scientific America: https://www.scientificamerican.com/article/brain-on-fire-my-month-of/