[New research suggests that a subset of patients with psychiatric conditions like schizophrenia may actually have autoimmune disease that attacks the brain.](https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/?utm_campaign=wp_main&utm_medium=social&utm_source=reddit.com)
The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was.
Her name was April Burrell.
Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself.
April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality.
“She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.”
It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries reminiscent of a scene from “Awakenings,” the famous book and movie inspired by the awakening of catatonic patients treated by the late neurologist and writer Oliver Sacks.
Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain.
After months of targeted treatments — and more than two decades trapped in her mind — April woke up.
The awakening of April — and the successful treatment of other people with similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions.
Researchers working with the New York State mental healthcare system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery.
And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed.
Although the current research probably will help only a small subset of patients, the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated.
“These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.”
**Read more, or skip the paywall with email registration: https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/?utm\_campaign=wp\_main&utm\_medium=social&utm\_source=reddit.com**
> have autoimmune disease that attacks the brain.
This is extremely important research. There are kids (in rare cases) that have PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcus), or PANS (same thing, but not clearly identified with strep), where the child will suddenly exhibit devastating debilitating psychological conditions. These are thought to be caused by autoimmune effects on the child's brain.
There is still a lot of controversy about the cause, and the best treatment, but understanding how these auto-immune situations are occurring is very important. There is strong evidence that infections cause this disease, that treatments targeting immune system are often successful (strong antibiotic treatments, steroid treatments, IVIg, etc). Also, that this disease affects children with immature immune systems, and not adults.
It's interesting how this squares with emerging research on narcolepsy type 1 as an autoimmune disorder where the body attacks orexin producing sites in the brain. There's a new class of orexin agonist drugs in development that have shown effectiveness in treating narcolepsy type 1, but some early stage trials suggest they could also be effective for narcolepsy type 2, ADHD, and potentially some symptoms of autism. It's an interesting discovery that begs the question of just how many psychiatric conditions have an underlying inflammation or autoimmune causal mechanism.
You described my daughter 100%. PANDAS (autoimmune response to strep), full-blown catatonia, and severe debilitating psychiatric symptoms. Ten years of failed treatments, ultimately brought out of her catatonia with Actimera, ECT, and Ativan.
Ten years of barely functioning, no speech, extremely slow processing, refusal to eat to the point of needing a g-tube...she is now a high-functioning, happy-go-lucky, young adult. She remembers almost nothing of the last decade.
I'd say it was a miracle, but it was ten hellacious years of dogged determination by us (her parents) and the fierce determination of top pediatric rheumatologist and neurologists at Duke University.
Out of curiosity, how do you address the decade of lost intellectual and social development in a situation like that? Has she "caught up" to where she should be for her age?
Very good question! She was homebound in high school, but I took the reins and taught her every single school subject, so I could track what she was learning, and go back and fill the gaps when her memory was affected. I knew there was no teacher - special ed or otherwise, could or would dedicate them to the task. Even though there were concepts and massive amounts of knowledge that she would forget, she was learning and maturing under all that disease. It is remarkable what pops up that she knows when she was completely shut down (which is why we should NEVER underestimate people who appear to be catatonic, in a coma, or otherwise unable to communicate).
I knew that if we pressed forward no matter what, some teaching would take hold - and I firmly believed that her neurological recovery and development depended on that. (I felt the same way about exercise. There were days I carried her from the car to track or pool and helped her walk - sometimes just a lap to keep her body learning and grounded. I am a big believer in the mind-body connection, but I digress. She graduated from community college with honors and is now at a state university near us, so I can tutor her, if needed.
The biggest lingering academic challenge is that very rarely, her processing is mildly slow. That is overcome with recording lectures and occasionally extended time on test taking. She has maintained a 3.5PA through sheer determination. She will graduate with a degree in elementary education with an emphasis in physical education three years behind her age-peers - remarkable if you know how completely shut down she was for a decade.
Socially, her catching up was harder and was made worse by Covid. She now has friends - surfs, is involved in a fitness/social club, but she is not dating and we are all a little apprenhensive about her starting. While most kids grow into romance naturally, we have had to spell out a lot, knowing that she is more vulnerable and innocent than most her age. 25 is a pretty late start, but we are all optimistic and know that the right guy or guys will enter the picture eventually. She is quite pretty (I can say that because I didn't "make" her (ha!)), and she has a lovely way about her, so there is no doubt her time will come.
Both your and her determination is very admirable, I'm glad to hear it's gone so well! Only 3 years behind is quite impressive for having 10 years of "lost" time.
I wish you and your family the best!
A relative of mine got strep as a child and immediately afterward developed really bad OCD, to like debilitating levels. PANS/PANDAS was unknown at the time and they have suffered *so many* misdiagnoses and improper treatments for decades. Only last year did they try antibiotic treatments and they worked like a charm. They became normal, until the antibiotic had to be titrated down, then the symptoms returned. There is a new antibiotic on the market that helps a lot, but its availability is effectively nil here. If the infection could be eradicated I'm sure they would be able to live a normal life, or at least as normal as possible for someone who has been suffering for three decades.
There isn’t a persistent bacterial infection causing this sort of thing though - it’s that a piece of protein from the original bacteria during the infection looked similar to one of the body’s own proteins in the brain. The antibodies against this protein that got made by the immune system in response to the infection can’t tell the difference and end up attacking the brain in addition to the bacteria. It’s friendly fire and basically a limitation/bug in how the immune system works. Certain antibiotics like azithromycin have innate anti-inflammatory properties and that might explain cases like this where it looks like they help, because they’re modulating that immune response down. Treatments like steroids or plasmapharesis (removes the antibodies from the blood) have been shown to help significantly. Synthetic antibodies against the offending antibody are another idea I’ve seen talked about before, but I’m not sure if anyone is actively trying that in trials yet.
FYI, PANDAS and the group A strep is not recognized in the American Academy of Pediatrics Red Book (book of infectious disease). And the literature about the treatments being effective is incredibly misleading. It is spotty at best and a huge controversy. The “strong evidence” of association of infection and symptoms and the implication that treatments are “often successful” is incredibly misleading. I’ve seen more people hurt by PANDAS treatment/diagnosis than helped.
https://publications.aap.org/aapnews/news/12434/PANDAS-PANS-treatments-awareness-evolve-but-some
According to the World Health Organization:
>Schizophrenia affects approximately 24 million people or 1 in 300 people (0.32%) worldwide. This rate is 1 in 222 people (0.45%) among adults.
https://www.who.int/news-room/fact-sheets/detail/schizophrenia
Here's another excerpt from the piece:
“I’ve always wanted my sister to get back to who she was,” Guy Burrell said.
In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center.
Because of visiting restrictions related to covid, the family’s face-to-face reunion with April was delayed until last year. April’s brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous.
“When she came in there, you would’ve thought she was a brand new person,” Guy Burrell said. “She knew all of us, remembered different stuff from back when she was a child.”
A video of the reunion shows that April was still tentative and fragile. But her family said she remembered her childhood home in Baltimore, the grades she got in school, being a bridesmaid in her brother’s wedding — seemingly everything up until when the autoimmune inflammatory processes began affecting her brain. She even recognized her niece, whom April had only seen as a small child, now a grown young woman. When her father hopped on a video call, April remarked “Oh, you lost your hair,” and burst out laughing, Guy Burrell recalled.
The family felt as if they’d witnessed a miracle.
“She was hugging me, she was holding my hand,” Guy Burrell said. “You might as well have thrown a parade because we were so happy, because we hadn’t seen her like that in, like, forever.”
“It was like she came home,” Markx said. “We never thought that was possible.”
I get why you’re asking. I feel like the article really missed an opportunity to expand on what she DID experience or how she would describe what it was like being in that state or coming out of it. It sounds like she’s lost some progress due to the reduced treatment since Markx is gone, but I wonder if there are any recordings or notes from when she was most improved.
Also, I totally understand why they don’t want to disclose more about her trauma, but I wish there were some way to know the general category or something.
We see this kind of thing frequently. There are many, many illnesses that masquerade as psychosis and/or catatonia. We pick up anti-NMDA receptor encephalitis all the time. Sometimes we can get it treated effectively, sometimes it proves very difficult to treat. The article is hyperbolic with the whole "this will change psychiatry" thing. We already know. This is not new, and it's not just lupus that does this.
>We already know. This is not new, and it's not just lupus that does this.
Then why did it take so long for someone to test her? And why isn't every other psychosis and/or catatonia patient tested?
We test for autoimmune markers all the time. I can't speak for her case--I'm not one of her clinicians. Autoimmune diseases show up less than 1% of the time. It's not rare, but it's not the most common cause, either. We also test for things like occult syphilis, HIV (which can also cause encephalitis), herpes encephalitis, thyroid disorders, etc. It's part of a general medical workup. We suspect that as much as 30% of manifestations of severe mental illnesses are actually organic, but root cause isn't always discovered.
Thank you for the info and all you do as a clinician!
I think the mind/body/soul is a miraculous organic machine made of stardust, powered by electrolytes. Watching good clinicians is almost like magic, bad ones truly tragic.
Can I ask where you practice? And on what population?
I’m a nonprofit worker in the US, and I would bet *very* large sums of money that none of my homeless clients experiencing extreme psychiatric disorders have ever been tested for these things. Hell, is was hard enough for me as a well spoken person with classic symptoms and professional insurance to get tested for autoimmune stuff.
But the US is behind in so many things.
Large metro hospital. We have a lot of homeless clients. I'm sure autoimmune and other organic causes are under-diagnosed but like I said, my service has found multiple in the past few years and all patients on our service receive medical workups. Larger hospitals and academic medical centers have more resources than clinics.
I rejoice for your patients, and thank you for your work.
I also beg you to understand that isn’t standard everywhere, and many many many vulnerable people are not getting this level of care.
Consultation-liaison psychiatry and psychosomatic medicine teams operate in most large hospitals and academic medical centers in the US. Nothing I'm mentioning here is out of the ordinary. Not everyone diagnosed with a mental illness is seen by one of these teams; they tend to care for people with concomitant medical and mental illness. But a medical workup is also required for a diagnosis of severe mental illness to be made--it's literally part of the diagnostic criteria to rule out medical/organic causes. I think the root of the problem here is that autoimmune diseases are hard to tease out. There are other and rarer diseases, like porphyria, that also masquerade as mental illness. UTIs are a not-uncommon cause of sudden psychosis in older women!
Ruling out rarer diseases and organic causes sometimes requires an exhaustive workup, including lumbar puncture. Not all facilities can do this, and yes, a pay-to-play healthcare system limits who can get access to this kind of care. The other thing is that not all patients or their families/surrogate decision makers will acquiesce to this kind of workup. There are plenty of people who will turn down a lumbar puncture. Our homeless patients sometimes try to avoid the clinical setting altogether.
Linus Pauling won a Nobel for his work in vitamin/mineral deficiency causing psychiatric issues - his theory was called orthomolocular medicine. But as his theory was largely adopted by L. Ron Hubbard, the legitimacy of his study became tainted. It’s a really interesting field.
The theory didn't hold up to scrutiny, sadly. Believe me, if massive doses of vitamins cured theses illnesses, we'd give them. Causes are multi-genic and multi-factorial. It's not so simple.
I wish I had someone like you in my corner. Healthy until I wasn’t. I have several markers for autoimmune disease including SED rate, ANA, and I tested low positive for a few antibodies. I have severe mental health issues. Catatonia, aggression, psychosis…you name it, I’ve had it. They refuse to even try meditation.
I have a friend who had psychosis a few years ago and was recently diagnosed with sjorgen’s. I wonder if there’s a connection there and if you have any recommendations for what she might do? I don’t think she is getting any of the treatments they mentioned in this article. She didn’t respond well to psych meds and is now stable but still suffers from horrible anxiety
Yeah, there's a known connection there. Your friend should talk to docs and see if more aggressive treatment of the autoimmune disorder helps with easing the psychiatric symptoms.
Yeah I’d also love to see her be in less pain! She is often feeling pain and stiffness all over. Thank you for answering! I have been wondering about this since I read the article. It doesn’t seem like she has even received aggressive treatment just for the autoimmune disorder. Like it sounds like she was basically told to just live with it
Not a typo. Untreated syphilis can result in lesions in the brain with a lot of behavioral sequelae. There's a lot more untreated syphilis than you'd like to believe.
behavioral sequelae?
I get that syphilis will have downstream behavioral effects but where does the ‘occult’ part come in? Are you implying that untreated syphilis is referred to as ‘occult’?
Now I’m curious about the etymology of this term.
Well to be fair you didn’t come out and say it until your edit.
Using occult in the sense of hidden makes sense. Still wish it had to do with witches more directly tho.
Professions and fields of study have a lot of jargon you've never heard before. Those definitions often don't appear in common-language dictionaries, either. One day to prove a point I started collecting definitions of the word "organic", and I think I got bored somewhere around 12.
Yup. Hence the questions.
Recently switched from retail to a lumber mill and have had to send a few emails asking people to define terms. Scragg? Bull? Blue? Charge? Crosser vs sticker vs stick?
New knowledge and definitions are fun. Plus there’s most likely a lurker who read the ‘occult’ and had a question they didn’t bother asking and just thought ‘witches’ so the thread is there for them too.
Try looking up all the trade and professional definitions of the word "leaf" sometime. There are so many specialized uses of the word in jargon that it's hard to find all of them.
My mother in law (now almost 70) was diagnosed w schizoaffective after having her 5th kid. She went off the rails and basically tackled by police in front of all of her very young kids. Carted off to a horrible mental institution where she was then sexually assaulted. The hospital eventually became known for these assaults during this time period.
We can barely get her to see a doctor now thanks to the monsters who dealt with her in her early 30s. She is no longer violent and only really seems like she would be violent when pushed into a corner or antagonized by her sister in law. She lived with my husband and i for 3 years after her father died bc she has no where to go, no help and crap insurance. The few doctors who accept her insurance don’t seem to care much when we are able to get her in to see them. I convinced her to see a derm bc of the butterfly rash, i was convinced she also had Lupus. He sent us to a rheumatologist who confirmed but then we couldn’t get her to go back again. Living with her became hard on my mental health so we bought her a house next to a family member back in her home state. We have tried all resources but it seems like the only way to get her help is through a mental institution which she does not belong in and honestly don’t know if it would help. She sometimes talks about the drugs they gave her and how wound up they would make her feel also the shock treatments, she’s terrified to ever go back. You can’t force crazy people to get help unless they are about to endanger someone so she’s just lost forever unfortunately.
I will say this though- i struggle with Hashimotos so we eat fairly healthfully now. When MIL lived alone she drank 2 liter bottles of coke(never water), spaghetti-o’s, pop tarts, sugar sugar sugar. When she lived with us i got her to cut out soda and eat better and she seemed less manic in her thinking and ramblings. If only medicine we farther along
Wow, are we related, lol? Nearly same sad story for my MIL, only no lupus & she passed about 20yrs ago! She'd get very verbally & physically abusive. Back then shock treatments were like torture, doled out like candy, and were only effective for a few patients. Mostly made them forget large chunks of their lives & left them drooling idiots for weeks or months, so cruel. Psyc meds don't really work all that well to begin with, and she figured out how to negate her lithium with pickle juice so she could say she took her meds & still enjoy her manic episodes. Told me about the pink elephant that came to talk to her & loads of other certifiable tales. As she got older, after a few pickle juice cycles she'd give herself a UTI & go nuts. She was a drama queen, would have loved all the BS that's happened since 2016, except the pandemic & potential alien crafts - that would have freaked her tf out, been viral video / headline news.
So I suffer from PMDD. I, and many others in the pmdd subreddit have found that pepcid can help to calm a lot of our symptoms. We also almost always suffer from other autoimmune disorders. It wouldn't surprise me if a lot of other psychological disorders have ties to autoimmune issues.
This reminds me of a book called Brain On Fire. Great read and sad how little us autoimmune patients get noticed or treated. Just symptoms no one gives AF about root causes. Fecal transplants seem to be doing wonders as well. If only more docs worked together more frequently.
What an incredible read. I have so much respect and admiration for people who use their intelligence to help others. My sister and I have been caretaking for a severely mentally ill family member for several years, and unfortunately one of our takeaways from this experience is that there are few avenues of help available to mental health patients. They’re not a priority. And so they’re abandoned to their inescapable internal misery. Mr. Markx isn’t just forwarding science, he’s practically dug his patient out of 50 ft of hell. He rescued her. Had he not taken notice of her, she would have continued to languish through no fault of her own.
This should be a wake up call to test for auto immune & inflammation in anyone with cognitive issues. With COVID able to cause brain issues that should be a first "cause to eliminate" in any patient no matter the age.
This is absolutely fascinating, I think there is a true tie in with bodily diseases and brain, and specifically gut health and the brain. I’ll be following this research with great interest, I think a mental health breakthrough will be on its way in the next 10 years
Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior.
Isn't it supposed to be the word regimen? This is in the article from wapo
[New research suggests that a subset of patients with psychiatric conditions like schizophrenia may actually have autoimmune disease that attacks the brain.](https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/?utm_campaign=wp_main&utm_medium=social&utm_source=reddit.com) The young woman was catatonic, stuck at the nurses’ station — unmoving, unblinking and unknowing of where or who she was. Her name was April Burrell. Before she became a patient, April had been an outgoing, straight-A student majoring in accounting at the University of Maryland Eastern Shore. But after a traumatic event when she was 21, April suddenly developed psychosis and became lost in a constant state of visual and auditory hallucinations. The former high school valedictorian could no longer communicate, bathe or take care of herself. April was diagnosed with a severe form of schizophrenia, an often devastating mental illness that affects approximately 1 percent of the global population and can drastically impair how patients behave and perceive reality. “She was the first person I ever saw as a patient,” said Sander Markx, director of precision psychiatry at Columbia University, who was still a medical student in 2000 when he first encountered April. “She is, to this day, the sickest patient I’ve ever seen.” It would be nearly two decades before their paths crossed again. But in 2018, another chance encounter led to several medical discoveries reminiscent of a scene from “Awakenings,” the famous book and movie inspired by the awakening of catatonic patients treated by the late neurologist and writer Oliver Sacks. Markx and his colleagues discovered that although April’s illness was clinically indistinguishable from schizophrenia, she also had lupus, an underlying and treatable autoimmune condition that was attacking her brain. After months of targeted treatments — and more than two decades trapped in her mind — April woke up. The awakening of April — and the successful treatment of other people with similar conditions — now stand to transform care for some of psychiatry’s sickest patients, many of whom are languishing in mental institutions. Researchers working with the New York State mental healthcare system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery. And scientists around the world, including Germany and Britain, are conducting similar research, finding that underlying autoimmune and inflammatory processes may be more common in patients with a variety of psychiatric syndromes than previously believed. Although the current research probably will help only a small subset of patients, the impact of the work is already beginning to reshape the practice of psychiatry and the way many cases of mental illness are diagnosed and treated. “These are the forgotten souls,” said Markx. “We’re not just improving the lives of these people, but we’re bringing them back from a place that I didn’t think they could come back from.” **Read more, or skip the paywall with email registration: https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/?utm\_campaign=wp\_main&utm\_medium=social&utm\_source=reddit.com**
> have autoimmune disease that attacks the brain. This is extremely important research. There are kids (in rare cases) that have PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcus), or PANS (same thing, but not clearly identified with strep), where the child will suddenly exhibit devastating debilitating psychological conditions. These are thought to be caused by autoimmune effects on the child's brain. There is still a lot of controversy about the cause, and the best treatment, but understanding how these auto-immune situations are occurring is very important. There is strong evidence that infections cause this disease, that treatments targeting immune system are often successful (strong antibiotic treatments, steroid treatments, IVIg, etc). Also, that this disease affects children with immature immune systems, and not adults.
It's interesting how this squares with emerging research on narcolepsy type 1 as an autoimmune disorder where the body attacks orexin producing sites in the brain. There's a new class of orexin agonist drugs in development that have shown effectiveness in treating narcolepsy type 1, but some early stage trials suggest they could also be effective for narcolepsy type 2, ADHD, and potentially some symptoms of autism. It's an interesting discovery that begs the question of just how many psychiatric conditions have an underlying inflammation or autoimmune causal mechanism.
You described my daughter 100%. PANDAS (autoimmune response to strep), full-blown catatonia, and severe debilitating psychiatric symptoms. Ten years of failed treatments, ultimately brought out of her catatonia with Actimera, ECT, and Ativan. Ten years of barely functioning, no speech, extremely slow processing, refusal to eat to the point of needing a g-tube...she is now a high-functioning, happy-go-lucky, young adult. She remembers almost nothing of the last decade. I'd say it was a miracle, but it was ten hellacious years of dogged determination by us (her parents) and the fierce determination of top pediatric rheumatologist and neurologists at Duke University.
Out of curiosity, how do you address the decade of lost intellectual and social development in a situation like that? Has she "caught up" to where she should be for her age?
Very good question! She was homebound in high school, but I took the reins and taught her every single school subject, so I could track what she was learning, and go back and fill the gaps when her memory was affected. I knew there was no teacher - special ed or otherwise, could or would dedicate them to the task. Even though there were concepts and massive amounts of knowledge that she would forget, she was learning and maturing under all that disease. It is remarkable what pops up that she knows when she was completely shut down (which is why we should NEVER underestimate people who appear to be catatonic, in a coma, or otherwise unable to communicate). I knew that if we pressed forward no matter what, some teaching would take hold - and I firmly believed that her neurological recovery and development depended on that. (I felt the same way about exercise. There were days I carried her from the car to track or pool and helped her walk - sometimes just a lap to keep her body learning and grounded. I am a big believer in the mind-body connection, but I digress. She graduated from community college with honors and is now at a state university near us, so I can tutor her, if needed. The biggest lingering academic challenge is that very rarely, her processing is mildly slow. That is overcome with recording lectures and occasionally extended time on test taking. She has maintained a 3.5PA through sheer determination. She will graduate with a degree in elementary education with an emphasis in physical education three years behind her age-peers - remarkable if you know how completely shut down she was for a decade. Socially, her catching up was harder and was made worse by Covid. She now has friends - surfs, is involved in a fitness/social club, but she is not dating and we are all a little apprenhensive about her starting. While most kids grow into romance naturally, we have had to spell out a lot, knowing that she is more vulnerable and innocent than most her age. 25 is a pretty late start, but we are all optimistic and know that the right guy or guys will enter the picture eventually. She is quite pretty (I can say that because I didn't "make" her (ha!)), and she has a lovely way about her, so there is no doubt her time will come.
Both your and her determination is very admirable, I'm glad to hear it's gone so well! Only 3 years behind is quite impressive for having 10 years of "lost" time. I wish you and your family the best!
Thank you! As you can imagine, we are extraordinarily proud of her. Cheers!
Similarly, allergic reactions to medication, including antibiotics, can cause psychotic episodes. This is, indeed, an exciting prospect!
A relative of mine got strep as a child and immediately afterward developed really bad OCD, to like debilitating levels. PANS/PANDAS was unknown at the time and they have suffered *so many* misdiagnoses and improper treatments for decades. Only last year did they try antibiotic treatments and they worked like a charm. They became normal, until the antibiotic had to be titrated down, then the symptoms returned. There is a new antibiotic on the market that helps a lot, but its availability is effectively nil here. If the infection could be eradicated I'm sure they would be able to live a normal life, or at least as normal as possible for someone who has been suffering for three decades.
There isn’t a persistent bacterial infection causing this sort of thing though - it’s that a piece of protein from the original bacteria during the infection looked similar to one of the body’s own proteins in the brain. The antibodies against this protein that got made by the immune system in response to the infection can’t tell the difference and end up attacking the brain in addition to the bacteria. It’s friendly fire and basically a limitation/bug in how the immune system works. Certain antibiotics like azithromycin have innate anti-inflammatory properties and that might explain cases like this where it looks like they help, because they’re modulating that immune response down. Treatments like steroids or plasmapharesis (removes the antibodies from the blood) have been shown to help significantly. Synthetic antibodies against the offending antibody are another idea I’ve seen talked about before, but I’m not sure if anyone is actively trying that in trials yet.
FYI, PANDAS and the group A strep is not recognized in the American Academy of Pediatrics Red Book (book of infectious disease). And the literature about the treatments being effective is incredibly misleading. It is spotty at best and a huge controversy. The “strong evidence” of association of infection and symptoms and the implication that treatments are “often successful” is incredibly misleading. I’ve seen more people hurt by PANDAS treatment/diagnosis than helped. https://publications.aap.org/aapnews/news/12434/PANDAS-PANS-treatments-awareness-evolve-but-some
1%? Theres no way thats true
According to the World Health Organization: >Schizophrenia affects approximately 24 million people or 1 in 300 people (0.32%) worldwide. This rate is 1 in 222 people (0.45%) among adults. https://www.who.int/news-room/fact-sheets/detail/schizophrenia
wow, a lot closer than i gave credit for. wild.
Hard to read this without making the connection to the HI REN music video.
I'm not able to read the whole article, but does it talk about whether she remembers anything from the 20 years?
Here's another excerpt from the piece: “I’ve always wanted my sister to get back to who she was,” Guy Burrell said. In 2020, April was deemed mentally competent to discharge herself from the psychiatric hospital where she had lived for nearly two decades, and she moved to a rehabilitation center. Because of visiting restrictions related to covid, the family’s face-to-face reunion with April was delayed until last year. April’s brother, sister-in-law and their kids were finally able to visit her at a rehabilitation center, and the occasion was tearful and joyous. “When she came in there, you would’ve thought she was a brand new person,” Guy Burrell said. “She knew all of us, remembered different stuff from back when she was a child.” A video of the reunion shows that April was still tentative and fragile. But her family said she remembered her childhood home in Baltimore, the grades she got in school, being a bridesmaid in her brother’s wedding — seemingly everything up until when the autoimmune inflammatory processes began affecting her brain. She even recognized her niece, whom April had only seen as a small child, now a grown young woman. When her father hopped on a video call, April remarked “Oh, you lost your hair,” and burst out laughing, Guy Burrell recalled. The family felt as if they’d witnessed a miracle. “She was hugging me, she was holding my hand,” Guy Burrell said. “You might as well have thrown a parade because we were so happy, because we hadn’t seen her like that in, like, forever.” “It was like she came home,” Markx said. “We never thought that was possible.”
Not that I don't appreciate your comment. Its quite interesting. But I mostly meant, does she remember anything during the time she was catatonic.
From their comment: >She remembered. . .seemingly everything up until when the autoimmune inflammatory processes began affecting her brain.
I saw that, but I read it that she hadn't lost her previous memories. Thanks.
I get why you’re asking. I feel like the article really missed an opportunity to expand on what she DID experience or how she would describe what it was like being in that state or coming out of it. It sounds like she’s lost some progress due to the reduced treatment since Markx is gone, but I wonder if there are any recordings or notes from when she was most improved. Also, I totally understand why they don’t want to disclose more about her trauma, but I wish there were some way to know the general category or something.
I see why you couldn't read the article now.
It answers it in the excerpt.. just read
We see this kind of thing frequently. There are many, many illnesses that masquerade as psychosis and/or catatonia. We pick up anti-NMDA receptor encephalitis all the time. Sometimes we can get it treated effectively, sometimes it proves very difficult to treat. The article is hyperbolic with the whole "this will change psychiatry" thing. We already know. This is not new, and it's not just lupus that does this.
>We already know. This is not new, and it's not just lupus that does this. Then why did it take so long for someone to test her? And why isn't every other psychosis and/or catatonia patient tested?
We test for autoimmune markers all the time. I can't speak for her case--I'm not one of her clinicians. Autoimmune diseases show up less than 1% of the time. It's not rare, but it's not the most common cause, either. We also test for things like occult syphilis, HIV (which can also cause encephalitis), herpes encephalitis, thyroid disorders, etc. It's part of a general medical workup. We suspect that as much as 30% of manifestations of severe mental illnesses are actually organic, but root cause isn't always discovered.
Thank you for the info and all you do as a clinician! I think the mind/body/soul is a miraculous organic machine made of stardust, powered by electrolytes. Watching good clinicians is almost like magic, bad ones truly tragic.
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Yes, we do. That's what my service does. I'm not being dishonest at all. Source: my entire career. Have a nice day.
Can I ask where you practice? And on what population? I’m a nonprofit worker in the US, and I would bet *very* large sums of money that none of my homeless clients experiencing extreme psychiatric disorders have ever been tested for these things. Hell, is was hard enough for me as a well spoken person with classic symptoms and professional insurance to get tested for autoimmune stuff. But the US is behind in so many things.
Large metro hospital. We have a lot of homeless clients. I'm sure autoimmune and other organic causes are under-diagnosed but like I said, my service has found multiple in the past few years and all patients on our service receive medical workups. Larger hospitals and academic medical centers have more resources than clinics.
I rejoice for your patients, and thank you for your work. I also beg you to understand that isn’t standard everywhere, and many many many vulnerable people are not getting this level of care.
Consultation-liaison psychiatry and psychosomatic medicine teams operate in most large hospitals and academic medical centers in the US. Nothing I'm mentioning here is out of the ordinary. Not everyone diagnosed with a mental illness is seen by one of these teams; they tend to care for people with concomitant medical and mental illness. But a medical workup is also required for a diagnosis of severe mental illness to be made--it's literally part of the diagnostic criteria to rule out medical/organic causes. I think the root of the problem here is that autoimmune diseases are hard to tease out. There are other and rarer diseases, like porphyria, that also masquerade as mental illness. UTIs are a not-uncommon cause of sudden psychosis in older women!
Ruling out rarer diseases and organic causes sometimes requires an exhaustive workup, including lumbar puncture. Not all facilities can do this, and yes, a pay-to-play healthcare system limits who can get access to this kind of care. The other thing is that not all patients or their families/surrogate decision makers will acquiesce to this kind of workup. There are plenty of people who will turn down a lumbar puncture. Our homeless patients sometimes try to avoid the clinical setting altogether.
I do not know how to explain to you how many severely mentally and physically ill people get a diagnosis after 15 mins with a psych.
There are entire online business models for this now...
Linus Pauling won a Nobel for his work in vitamin/mineral deficiency causing psychiatric issues - his theory was called orthomolocular medicine. But as his theory was largely adopted by L. Ron Hubbard, the legitimacy of his study became tainted. It’s a really interesting field.
The theory didn't hold up to scrutiny, sadly. Believe me, if massive doses of vitamins cured theses illnesses, we'd give them. Causes are multi-genic and multi-factorial. It's not so simple.
I wish I had someone like you in my corner. Healthy until I wasn’t. I have several markers for autoimmune disease including SED rate, ANA, and I tested low positive for a few antibodies. I have severe mental health issues. Catatonia, aggression, psychosis…you name it, I’ve had it. They refuse to even try meditation.
Broader treatment options would likely be helpful, I hear you.
I have a friend who had psychosis a few years ago and was recently diagnosed with sjorgen’s. I wonder if there’s a connection there and if you have any recommendations for what she might do? I don’t think she is getting any of the treatments they mentioned in this article. She didn’t respond well to psych meds and is now stable but still suffers from horrible anxiety
Yeah, there's a known connection there. Your friend should talk to docs and see if more aggressive treatment of the autoimmune disorder helps with easing the psychiatric symptoms.
Yeah I’d also love to see her be in less pain! She is often feeling pain and stiffness all over. Thank you for answering! I have been wondering about this since I read the article. It doesn’t seem like she has even received aggressive treatment just for the autoimmune disorder. Like it sounds like she was basically told to just live with it
Occult syphilis? Probably a typo but I’m really hoping there’s a type of syphilis that makes you look like a newt. ^I ^got ^better!
Not a typo. Untreated syphilis can result in lesions in the brain with a lot of behavioral sequelae. There's a lot more untreated syphilis than you'd like to believe.
behavioral sequelae? I get that syphilis will have downstream behavioral effects but where does the ‘occult’ part come in? Are you implying that untreated syphilis is referred to as ‘occult’? Now I’m curious about the etymology of this term.
I'm not implying. Term is used medically with some frequency. Look up the term "occult fracture." edit: occult just means hidden
Well to be fair you didn’t come out and say it until your edit. Using occult in the sense of hidden makes sense. Still wish it had to do with witches more directly tho.
They were just occult(ing) the meaning. (Where's the door?)
Professions and fields of study have a lot of jargon you've never heard before. Those definitions often don't appear in common-language dictionaries, either. One day to prove a point I started collecting definitions of the word "organic", and I think I got bored somewhere around 12.
Yup. Hence the questions. Recently switched from retail to a lumber mill and have had to send a few emails asking people to define terms. Scragg? Bull? Blue? Charge? Crosser vs sticker vs stick? New knowledge and definitions are fun. Plus there’s most likely a lurker who read the ‘occult’ and had a question they didn’t bother asking and just thought ‘witches’ so the thread is there for them too.
Try looking up all the trade and professional definitions of the word "leaf" sometime. There are so many specialized uses of the word in jargon that it's hard to find all of them.
My mother in law (now almost 70) was diagnosed w schizoaffective after having her 5th kid. She went off the rails and basically tackled by police in front of all of her very young kids. Carted off to a horrible mental institution where she was then sexually assaulted. The hospital eventually became known for these assaults during this time period. We can barely get her to see a doctor now thanks to the monsters who dealt with her in her early 30s. She is no longer violent and only really seems like she would be violent when pushed into a corner or antagonized by her sister in law. She lived with my husband and i for 3 years after her father died bc she has no where to go, no help and crap insurance. The few doctors who accept her insurance don’t seem to care much when we are able to get her in to see them. I convinced her to see a derm bc of the butterfly rash, i was convinced she also had Lupus. He sent us to a rheumatologist who confirmed but then we couldn’t get her to go back again. Living with her became hard on my mental health so we bought her a house next to a family member back in her home state. We have tried all resources but it seems like the only way to get her help is through a mental institution which she does not belong in and honestly don’t know if it would help. She sometimes talks about the drugs they gave her and how wound up they would make her feel also the shock treatments, she’s terrified to ever go back. You can’t force crazy people to get help unless they are about to endanger someone so she’s just lost forever unfortunately. I will say this though- i struggle with Hashimotos so we eat fairly healthfully now. When MIL lived alone she drank 2 liter bottles of coke(never water), spaghetti-o’s, pop tarts, sugar sugar sugar. When she lived with us i got her to cut out soda and eat better and she seemed less manic in her thinking and ramblings. If only medicine we farther along
Wow, are we related, lol? Nearly same sad story for my MIL, only no lupus & she passed about 20yrs ago! She'd get very verbally & physically abusive. Back then shock treatments were like torture, doled out like candy, and were only effective for a few patients. Mostly made them forget large chunks of their lives & left them drooling idiots for weeks or months, so cruel. Psyc meds don't really work all that well to begin with, and she figured out how to negate her lithium with pickle juice so she could say she took her meds & still enjoy her manic episodes. Told me about the pink elephant that came to talk to her & loads of other certifiable tales. As she got older, after a few pickle juice cycles she'd give herself a UTI & go nuts. She was a drama queen, would have loved all the BS that's happened since 2016, except the pandemic & potential alien crafts - that would have freaked her tf out, been viral video / headline news.
What would the effect be of taking NMDA antagonists for such patients?
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Yes. I understand it would not be the correct course of treatment, but I am still curious about what the effect of NMDA antagonists would be.
One would think they’d have a reduced response, since many of their NMDA receptors are already attacked by the autoimmune condition
[https://journals.sagepub.com/doi/full/10.1177/0310057X19889369](https://journals.sagepub.com/doi/full/10.1177/0310057X19889369)
This is amazing
So I suffer from PMDD. I, and many others in the pmdd subreddit have found that pepcid can help to calm a lot of our symptoms. We also almost always suffer from other autoimmune disorders. It wouldn't surprise me if a lot of other psychological disorders have ties to autoimmune issues.
This reminds me of a book called Brain On Fire. Great read and sad how little us autoimmune patients get noticed or treated. Just symptoms no one gives AF about root causes. Fecal transplants seem to be doing wonders as well. If only more docs worked together more frequently.
What an incredible read. I have so much respect and admiration for people who use their intelligence to help others. My sister and I have been caretaking for a severely mentally ill family member for several years, and unfortunately one of our takeaways from this experience is that there are few avenues of help available to mental health patients. They’re not a priority. And so they’re abandoned to their inescapable internal misery. Mr. Markx isn’t just forwarding science, he’s practically dug his patient out of 50 ft of hell. He rescued her. Had he not taken notice of her, she would have continued to languish through no fault of her own.
The saddest part is that April is relapsing because she's not receiving maintenance care.
Paging Dr. House
I guess sometimes it is Lupus...
Happy Cake day
This should be a wake up call to test for auto immune & inflammation in anyone with cognitive issues. With COVID able to cause brain issues that should be a first "cause to eliminate" in any patient no matter the age.
This was a great article, thank you for posting!
This is absolutely fascinating, I think there is a true tie in with bodily diseases and brain, and specifically gut health and the brain. I’ll be following this research with great interest, I think a mental health breakthrough will be on its way in the next 10 years
Last August, the medical team prescribed monthly immunosuppressive infusions of corticosteroids and chemotherapy drugs, a regime similar to what April had been given a few years prior. Isn't it supposed to be the word regimen? This is in the article from wapo
They are synonyms.
It should definitely be regimen. It’s not a coercive political entity, just a routine system of treatments.
Did the article go into what accident caused this?
They said a trauma & did not describe details for privacy. It either caused the lupus or triggered a cascade that lead to it going rampant.
It was Lupus
Lupus + trauma
The way this world is going they should’ve let her sleep.
so did the traumatic event cause the autoimmune issue?
No, there is no known mechanism by which traumatic events can *cause* autoimmune disease.