A catatonic woman awakened after 20 years. Her story may change psychiatry.

[Judee]

We can only hope...

https://www.washingtonpost.com/wellness/2023/06/01/schizophrenia-autoimmune-lupus-psychiatry/

"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 [wrongly] 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. [word added/bolding mine]

...little had changed for the patient [Dr Markx] had seen nearly two decades earlier. In the years since they had first met, April had undergone many courses of treatment — antipsychotics, mood stabilizers and electroconvulsive therapy — all to no avail."

Well, yeah!!!

"...Markx was able to get family consent for a full medical work-up. He convened a multidisciplinary team of more than 70 experts from Columbia and around the world — neuropsychiatrists, neurologists, neuroimmunologists, rheumatologists, medical ethicists — to figure out what was going on.

The first conclusive evidence was in her bloodwork: It showed that her immune system was producing copious amounts and types of antibodies that were attacking her body. Brain scans showed evidence that these antibodies were damaging her brain’s temporal lobes, areas that are implicated in schizophrenia and psychosis.

The team hypothesized that these antibodies may have altered the receptors that bind glutamate, an important neurotransmitter, disrupting how neurons can send signals to one another.

Even though April had all the clinical signs of schizophrenia, the team believed that the underlying cause was lupus, a complex autoimmune disorder in which the immune system turns on its own body, producing many antibodies that attack the skin, joints, kidneys or other organs. But April’s symptoms weren’t typical, and there were no obvious external signs of the disease; the lupus appeared to be affecting only her brain.

Waking up after two decades

The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus.

The article says, "After months of targeted treatments — and more than two decades trapped in her mind — April woke up.

It also said, "Researchers working with the New York state mental health-care system have identified about 200 patients with autoimmune diseases, some institutionalized for years, who may be helped by the discovery.

Happy ending but still sad because of so many wasted years on an erroneous misdiagnosis.

(As usual, I'm having a hard time reading further than that but there was another case discussed after hers that I haven't gotten to yet but wanted to share this before I forget.)

 

[hapl808]

Happy ending but still sad because of so many wasted years on an erroneous misdiagnosis.

I read this when I was doing a bit better. If I recall, she sadly regressed after that, which makes the story a bit less inspiring. So many 'good' treatments for things don't seem durable.

 

[Judee]

I read this when I was doing a bit better. If I recall, she sadly regressed after that, which makes the story a bit less inspiring. So many 'good' treatments for things don't seem durable.

Oh.

I didn't read that far.

 

[lenora]

How sad, such a wasted life for April. Who would want to wake up to the say the passage of 40 years?

I was a victim of autoimmune encephalitis and was in a coma for just a few days. That illness can definitely cause brain trauma that is lasting. I felt like my usual exhausted and painful self, so wasn't even aware that I had encephalitis (which they think is the the root cause).

This is a new disease and machines aren't enough for a diagnosis. Specialists such as neurologists and psychiatrists who specialize in the mechanisms of the brain are necessary. I just feel very fortunate that I had minimal damage. There are gaps, yes, but it can be rather traumatic. Yours, Lenora

 

[hapl808]

How sad, such a wasted life for April. Who would want to wake up to the say the passage of 40 years?

This is how I feel about the last 10 years. My first 15 years of mild-moderate I was at least still living, even if my health problems derailed my life. I still was able to travel, even if I constantly became ill. I still was able to work, even if I constantly had to work around health problems in ways people hopefully wouldn't notice or would just think eccentric.

The last 10 years of more severe don't feel like living. It's reading meaningless research papers, trying all the supplements and medications I can afford or seem worth the risk-reward ratio, trying to pretend like I'm still alive and talking to friends, then crashing afterwards in isolation for days or weeks.

I had many opportunities and a lot of luck and privilege with where I started off in life. Lots of great experiences in my first 25 years. Can't really complain about that, just seems like a waste for where I ended up.

If I got better tomorrow, it would feel like waking up from a 10 year nightmare where the only thing I have to show for it is Dunning Kruger knowledge of COX inhibitors, 5-LOX inflammation, ineffective LPR-LES-TLESR treatments, autonomic nervous system dysfunction, pseudoscience of methylation and genetic theories, BDNF and TrkB mechanisms with no evidence, jumbled calculations of concentrations for antiviral efficacy in vivo, and so forth.

However, of course I no longer expect to get better tomorrow anyways.

One of the reasons I never joined here before is I always did expect to get better tomorrow. Or maybe within the next month or two. I'm optimistic by nature, and I thought people here were too focused on the negative. So I kept (stupidly) pushing through, listening to doctors who encouraged my mind-over-matter mindset, and ignored my decline until it was too late.

I think pretty much everyone who experiences relatively severe symptoms is watching the passage of years. Technically awake, but always hoping to somehow wake up.

 

[Rufous McKinney]

Technically awake, but always hoping to somehow wake up.

exactly.

trying all the supplements and medications I can afford or seem worth the risk-reward ratio, trying to pretend like I'm still alive and talking to friends, then crashing afterwards in isolation for days or weeks.

tediously exhausting

I still was able to work, even if I constantly had to work around health problems in ways people hopefully wouldn't notice or would just think eccentric.

me too....my brain kept it together so I faked the rest.

 

[YippeeKi YOW !!]

If I got better tomorrow, it would feel like waking up from a 10 year nightmare where the only thing I have to show for it is Dunning Kruger knowledge of COX inhibitors, 5-LOX inflammation, ineffective LPR-LES-TLESR treatments, autonomic nervous system dysfunction, pseudoscience of methylation and genetic theories, BDNF and TrkB mechanisms with no evidence, jumbled calculations of concentrations for antiviral efficacy in vivo, and so forth.

I hope you won't take this the wrong way, but " .... the Dunning-Kruger knowledge ...." made me laugh !!!! Cause that's exactly how I feel about the reams and reams of " knowledge " that I've accumulated, trying to out-fox this shabby little ass-kicker of an illness ... you summed it up beautifully !!!!

 

[lenora]

Hi @Hap1808. I'm sorry you feel that way. Can you watch a TV show, read a book....even if by podcast, or help others? If you can do any of those things you can find small moments of joy in each day.

True, it's not living the life you knew, but I think we turn a corner and realize that will never be a reality again and take what we can out of life.

I happen to know a few people with chronic conditions that are worse than ours, some even more than chronic. That helps as I know there are other people in this world who suffer. Once I got my pain under better control, I felt like I had made some progress.

Well, progress means different things in different ways. I never did return to school or join a practice, but I have spent the past 40 years (well, fewer than that) helping others at a time when absolutely nothing about my diseases existed (I have a few neurological illnesses). Hey, I look at progress as not having to go to the hospital this year. A few years ago I was in and out every few weeks.

I spend a lot of time on our back porch. Somehow this makes me feel alive....nature, noises....just a different way of life. I'm sorry you feel the years have been lost and I know what you mean. Please make every effort to look at "loss" in a different way. Good luck. Yours, Lenora

 

[junkcrap50]

I read this when I was doing a bit better. If I recall, she sadly regressed after that, which makes the story a bit less inspiring. So many 'good' treatments for things don't seem durable.

She regressed because she was unable to access her treatments.

I felt like my usual exhausted and painful self, so wasn't even aware that I had encephalitis (which they think is the the root cause).

I think encephalitis (some sort) was what presented/triggered my CFS and still might be.

This is a new disease and machines aren't enough for a diagnosis. Specialists such as neurologists and psychiatrists who specialize in the mechanisms of the brain are necessary. I just feel very fortunate that I had minimal damage. There are gaps, yes, but it can be rather traumatic. Yours, Lenora

Well it's a whole new field: neuro-immunology. The specialty of immunology itself has to catch up to begin with first. It's decades behind. All they know is allergies, which means they should really be called allergists. There is no such thing as a clinical immunologist (except Nancy Klimas). Rheumatologists don't know or do anything unless you already have a disease/pathology with tissue/organ failure/destruction that's irreversible and you have to have an textbook autoantibody present.

They just haven't developed or discovered enough neurological autoantibodies. Anti-NMDA receptor antibodies was only discovered in 2007, before then you get dx with psychosis & paranoia and put in the loony bin (like this poor woman). It wasn't until 2012 when the book Brain on Fire came out did it get on anybody's, let alone doctors', radars (probably the public knew about it before doctors did). I think a large % of psychiatric cases have neurological autoimmune involvement. Psychiatrists don't seem to know any recent (<20yo) literature (eg: neuroinflammation, PANDAS, neuroplasticity, Kynurenine or glutamate, etc.). To be fair, there's not much they can do besides match drugs to symptoms.

 

[hapl808]

I spend a lot of time on our back porch. Somehow this makes me feel alive....nature, noises....just a different way of life. I'm sorry you feel the years have been lost and I know what you mean. Please make every effort to look at "loss" in a different way. Good luck. Yours, Lenora

Sure, I'm aware and sometimes I can do this.

When I lost the careers I had planned, I pivoted and found new things where I could work one day and rest for 2-3 days. I adjusted my travel until it was doable. I was determined to focus on what I could do, not what I couldn't do.

When I lost the ability to travel, I managed to still work locally with some mobility assistance. I still saw friends as much as I could, and pivoted careers to something less exciting but still interesting and social.

When I lost the ability to get around locally, I still had people over when I could and appreciated what I had, my kitchen, my ability to entertain, etc.

When I started having breathing issues and no longer had a comfortable place to live, I appreciated that I could still see a friend on occasion.

When seeing friends caused too much of a crash, I appreciated that I could still talk on the phone to them.

When I started having trouble talking on the phone, I appreciated that I had a Kindle.

When Kindle reading became too challenging, I appreciated that I had a laptop in bed and could still browse Reddit or watch a YouTube video (usually a repeat, because it was less stimulating).

You get the idea.

If my illness had stopped at any of those stages, I'm quite adaptable. Even for someone like me who used to seek out stimulation and adventure and new experiences.

But I haven't been able to make it out of the house in years. The last several times I left all caused serious crashes with long term notches down on the scale of ability, so I have to be very careful. Most activities come with a cost, sometimes a permanent one. I haven't been able to stand without assistance in many years.

If I have to go to the hospital for anything, I think there's a good chance I don't make it back - so I'm quite cautious and careful because I know how fragile even what I still have can be. And I really do appreciate it, mainly because I realize how much worse it can get (I can still just barely take care of myself, and with visual and auditory sensitivity, I have no clue how I would deal with a caretaker even if I had one or could afford one).

Just feeling more negative probably because I mostly lost my voice so I couldn't talk on the phone anyways, watching videos gets boring, and the money will run out in the not so distant future. But that's a worry for future me (if that person exists).

Again, all a shame because if I could've stopped the descent at any of those stages, I'd have had a much more enjoyable life. But often people encouraged me to 'do what I could' which led to me pushing through and thinking I'd recover afterward. Sadly, sometimes no recovery was forthcoming.

 

[Judee]

She regressed because she was unable to access her treatments.

 

[zzz]

First of all, @Judee, thanks for pointing us to such an incredible story of recoveries from seemingly intractable medical conditions! I personally found these stories to be incredibly inspiring.

We can only hope...

Yes, we can. Although these stories have no direct bearing on ME/CFS, they show how a paradigm shift can start with just one doctor and revolutionize an entire field of medicine. For all those people who can post here - even for those people who can't post but who can at least read the posts here - we are all better off than these women were when they were at their worst.

How sad, such a wasted life for April. Who would want to wake up to the say the passage of 40 years?

As @hapl808 has pointed out, many of us are in somewhat similar situations, though certainly nowhere near as bad as these women (at least for those of us who can at least read these posts). I myself have been almost completely housebound and largely bedbound for the last 25 years. The major relapse that started 25 years ago happened when I was 46, and I am now 71, so that's an awfully big chunk out of my life.

Throughout this time, my underlying condition has continued to deteriorate. But I keep trying new drugs and supplements, many of which are helpful symptomatically, often by a lot, at least for a while. The fact that I am able to write a post this long here (which is the longest I've written here in a number of years) is a good indication that my current regimen is helping a lot.

But I am not that far away from @hapl808's condition, and I have been much closer to it even in the recent past. I recently said to some of my friends and family in individual conversations, "Did you ever wonder what the world would be like when you're gone? Well, I feel like I've been viewing the world from that situation for the last 25 years. I've been just watching it go by, seeing all the things I used to be able to participate in, and watching the new developments from the sidelines as well."

Unexpectedly, this drew laughter from everyone I told it to. But it was kind laughter, as it was the result of people close to me being able to see my condition in a new light. I am one of the fortunate ones who is believed by all my friends and family when I talk about my illness.

However, of course I no longer expect to get better tomorrow anyways.

Probably not tomorrow. But the families of the women in these stories had given up all hope - they never expected them to show any meaningful recovery at all. There is no reason to believe that our chances for recovery aren't as least as good as theirs, especially since recovery from ME/CFS is a known phenomenon. It may take a while before a proper treatment is developed, though, and of course we have no way of knowing how many years that will be. But at least we have a number of highly intelligent people working on this for us. For the women in this story, there was no active research into their condition going on - they had just been written off.

She regressed because she was unable to access her treatments.

Unfortunately, this is true. But the good news, as the article makes clear, is that the regression was due only to the interruption in treatment, and not to any limitation of the treatment itself. The full paragraph describing April's current situation, which is a bit more optimistic, reads as follows:

April, who is turning 50 this year, has lived in a rehabilitation center for the past three years. Her family continues to visit, but she has recently regressed because she was not receiving adequate maintenance care, Markx [her doctor] said. Markx and April’s family remain optimistic that she will improve after resuming treatment.

The article also mentions Dr. Oliver Sacks a number of times; he's a groundbreaking neurologist who first rose to prominence among the general public with his book (and later movie) The Man Who Mistook His Wife for a Hat. He also did the research and work upon which the book and later the movie Awakenings, which is mentioned several times in the article, is based; he wrote both of these as well. Awakenings describes the story of a group of people who became catatonic as a result of an encephalitis lethargica outbreak in the 1930s, but were briefly fully awakened in the 1960s by Sacks' administration of L-DOPA to them. The movie is extremely inspiring, again showing what the inspiration of just a single doctor can accomplish. (Awakenings is available to rent on Amazon Prime.)

The article quotes Sacks as follows, as he is speaking to Dr. Markx in relation to Markx's patients:

“Your work gives me hope about the outcomes we can achieve with our patients that I never before would have dreamed possible, as these are true cases of ‘Awakenings’ where people get to go back home to their families to live out their lives,” Sacks said, according to contemporaneous notes kept by Markx. (The statement was confirmed by Kate Edgar, Sacks’s long-term personal editor and executive director of the Oliver Sacks Foundation.)

For someone with Sacks's accomplishments to say this gives me renewed hope indeed for all of us.

I thought I'd close with a picture of Devine Cruz after her treatment, along with Dr. Markx; I think it speaks for itself.

 

[lenora]

Dr. Sacks is now dead, but I have all of his books and they're all highly readable.

Did you know that he was actually a rebel? English born and educated, yet he loved living on the outside of society. Perhaps that's what gave him the insight he had. Anyway, a fine man that the entire will miss. Yours, Lenor