Holistic Recovery from Schizophrenia

The scientifc method

I had lunch today with the scalar energy shaman. We discussed the frustrations that both of us are having with the plant power guy, namely, that he has no documented results of his testing, even though he uses credible scientific instruments and well-established muscle testing techniques. The plant power guy claims Chris has a deficient immune system, but he does not produce progressive reports based on evidence that shows whether the plant power that he prescribes to fix the problem is doing the job.

While lack of documented evidence is a common problem with alternative healers,  I feel that conventional psychiatry doesn’t do much better. We are asked to take a leap of faith based on one person’s best guess as to the diagnosis (symptoms), then we are asked to believe that the medication prescribed address the fictitious problem. “Fictitious,” because most antipsychotic medications are dopamine receptor antagonists, and there is growing scientific skepticism about the dopamine theory serving as all-encompassing explanation of certain kinds of mental illness.

Even though we know that it is often our belief system, rather than hard data, driving our choices, there is still a need for more documented evidence and greater disclosure in any path we choose to take.  Alternative healers, too, not just mainstream medicine, should be mindful of the scientific method.

Why “Brain on Fire” has important implications for the schizophrenias

Brain on Fire, by Susannah Cahalan
review by Mehmet Oz, M.D.
“Engrossing. . . . Unquestionably, an important book on both a human and a medical level. Cahalan’s elegantly-written memoir of her dramatic descent into madness opens up discussion of the cutting-edge neuroscience behind a disease that may affect thousands of people around the world, and it offers powerful insight into the subjective workings of our minds.”

—Mehmet Oz, M.D., Professor and Vice Chair, Department of Surgery, New York Presbyterian-Columbia Medical Center (Mehmet Oz, M.D. )  

From Psychiatric Times Cahalan interview

HF: Everyone who reads Brain on Fire is going to experience an exceedingly well-written piece of medical journalism that is only made better by your being the reporter and the subject. In addition to simply being on the lookout for rare but thankfully treatable conditions with psychiatric presentations, do you think there are any special lessons for psychiatrists who read your book?

SC: This is a great question. Obviously, the implications of this disease and others like it (there are many other types of autoimmune encephalitis that have been consequently discovered) are that neurological diseases can cause behaviors that are nearly indistinguishable from psychiatric diseases. I think greater vigilance on the part of psychiatrists about ruling out neurological causes is exceedingly important.

Another, less obvious outcome is that early on in my treatment, when I was thought to be suffering from a psychiatric disorder, my care was less sympathetic than it was later, when I was diagnosed with a neurological disease. Why is this? And how can we remove this stigma attached to mental illness? At the height of my disease, nothing distinguished me from a person with schizoaffective disorder or schizophrenia—the only difference came later: when I was cured. I don’t know how we change the systematic treatment of mental illness in this country, but clearly it needs to be rethought.

Excerpt from Cahalan’s book:
By the time I was a patient at NYU, Dr. Dalmau had fine-tuned his approach, designing two tests that could swiftly and accurately diagnose the disease. As soon as he received my samples, he could test the spinal fluid. If he found that I had anti-NMDA-receptor autoimmune encephalitis, it would make me the 217th person worldwide to be diagnosed since 2007. It just begged the question: If it took so long for one of the best hospitals in the world to get to this step, how many other people were going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?

Excerpt from Cahalan interview in The Guardian
“If an autoimmune disease can create symptoms that look exactly like schizophrenia, that raises the question, what is schizophrenia? And are there forms of schizophrenia that are caused by other types of autoimmune disease? Or other diseases that we haven’t discovered yet? It’s all neurological. We separate problems with the brain into neurological and psychiatric, and it’s because it’s stigmatised still. Mental illness is still stigmatised.

And, finally, the more traditional answer:

From ZocDoc (Get real answers to your health questions from real doctors)

Does schizophrenia cause seizures?

Q: My son, in his mid 20s, was just diagnosed with schizophrenia. Could this explain the seizures that he began having 6 months ago? I haven’t read anything about schizophrenia causing seizures, but if it does, then should we use another type of medication to treat them?

A. You have my sympathy about your son’s recent diagnosis. What you have read has been correct, schizophrenia does not typically cause real seizures. Therefore, if the schizophrenia diagnosis is correct, then the two are not likely to be related. While schizophrenia typically does not cause seizures, epilepsy can sometimes produce symptoms that are similar to schizophrenia. Therefore, one must be careful when diagnosing someone who has seizures with schizophrenia (you must make sure that the epilepsy is not causing the symptoms). The vast majority of time, epilepsy does not cause these symptoms. Without knowing anything about his case, I can say that it is possible that his seizures could have been pseudoseizures. These are convulsions that are not caused by epileptic brain activity. They can occur from during times of severe stress, something that schizophrenics can go through. Since pseudoseizures are not true seizures, they are very difficult to treat. I suggest that you schedule an appointment with your son’s neurologist (or whoever cares for his seizures). Make sure that he or she feels that your son’s seizure treatment is appropriate for his new diagnosis (unless this physician is aware already). It is also important for this physician to review his new list of medications because some psychoactive medications that can increase the likelihood of seizures. Good luck.

Lars and the Real Girl

My sister has been urging me to watch this award winning 2007 film, and finally sent it to me as her Christmas gift. Yesterday afternoon, I settled down to watch it. The basic plot: Lars, a 27 year old loner, decompensates into what the family doctor terms “delusional disorder,” by buying a mail order anatomically correct female doll, which he introduces to his shocked brother and sister-in-law with whom he lives. Karin, the sister-in-law “gets it” quite quickly, meaning she figures it’s better to enter into Lars delusion as a way of communicating with him. She suggests that “Bianca” probably needs a physical check-up after her long journey. The doctor convinces Lars that Bianca needs a weekly visit and that Lars should come along with her to keep her company.

Lars’ brother Gus is quite hostile to the idea of buying into Lars’ delusion while his wife is more supportive of the idea. This, of course, causes tension between the two of them. The screenwriter, Nancy Oliver, has cleverly intuited that how well or poorly a bizarre behavior by a family member is handled by the family (and the community), makes a huge difference to healing. She also strongly implies that the behavior is the attempt at healing. This film would be an excellent teaching aid in mental health recovery programs.

  
Doctor: What we call mental illness,
isn't always just an illness ...
  
It can be a communication,
it can be a way of work something out.
  
Gus: Fantastic. When will be over?
  
Doctor: When he doesn't need it anymore
  
Karin: How can we help?
  
Doctor: Go along with it
Gus: -- Oh no.  No that's...
No no...
No I mean...
pretend that she is real?    I'm not gonna do that,
I mean I can't.   I'm just not gonna do it
  
Doctor: She is real.
Gus: -Well...
  
Doctor: She's right out there
Gus: -- Right, I get that
  
I'm just not gonna...  You know, I'm just not gonna
I'm not gonna do it, so...
  
Doctor: You won't be able to change his mind anyway

Bianca's in town for a reason.
Gus: -- Right, but... but ...

Doctor: It's not really a choice.
  
Gus: Then we'll do it, whatever it takes.

	


	





	

		
		
28 up and Side Effects
	


	
	
	

		
One half of the title of this post is an homage to the British documentary series about the hopes and aspirations of a diverse group of children seen at the ages of 7, 14, 21, 28, etc.  I have written about the importance of the first Saturn return, which takes place around the ages of 28 to 30. This is the age when people’s lives begin to take on a direction to carry them forward for the next few decades. So, here’s what the ages 27 to 29 have looked like, from a strictly activity point of view, for my son Chris. 


    

  • discovers love of musical theater and connects with different choral groups
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  • practices Transcendental Meditation (for over a year)
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  • expands circle of friends, including now a girlfriend
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  • starts taking piano lessons again after a 15 year hiatus
    • 

  • talks more seriously about getting a degree
    • 



Why am I even bothering to mention these activities, which many people already manage to sandwich into a busy schedule while holding down jobs or pursuing education? Because, if you are, or were, like me, having a son or daughter in an almost total state of withdrawal and dependency lasting longer than we could have imagined, we may begin to believe that our adult child will never become self-advocating and independent. It is very likely that this dream of ours was discouraged at the outset by the people who should instill hope, but don’t do a very good job of it – namely the medical profession. To gain real hope, I learned early on from others who had been there, you have to distance yourself from the medical view, which is pessimistic and incomplete.


And, speaking of movies, Side Effects, opens this week-end.
 Steven Soderbergh’s “Side Effects” follows twists and turns involving a fictitious antidepressant (which has its own real Web site).



	


	





	

		
		
A new film: Beyond the Medical Model
	


	
	
	

		
From Sera Davidow’s blog at Mad in America


Accepting the true message of the film would mean having to admit we don’t have all the answers. It would mean acknowledging that we’ve given or received incomplete or flatly incorrect information for a long time. It would mean that some well-intentioned people who are highly educated have done harm when they thought they were helping.

It would mean a loss of income for pharmaceutical companies who thrive on the message that virtually everyone can benefit from some sort of pill. It would mean we don’t have easy explanations for why some really scary things happen. It would mean we have to say ‘I don’t know why,’ a hell of a lot more. And sadly, it would mean that some of us will find ourselves asking, “You’re telling me I didn’t have to live like this for all these years?”

No, the message of the film is not anti-medical model. But the film does call for recognition of the pain the medical model has caused. That pain has been caused not so much by its existence but because of the force and dishonesty with which it has been applied. Were there more transparency about the medical model being just one of many options, about the lack of definitive scientific proof for its claims, about the true benefits and risks of psychiatric drugs… Well, then, it would just be another tool in the tool box that we could try or not try, use or discard.


The Message is…
The film’s message is one of freedom. It is one of the right to tell your own story and choose your own path (including the medical model), or to meander about across many paths as works for you. 


Read more about the film here and watch the trailer.

	


	





	

		
		
Splenectomies, immune system development, and schizophrenia
	


	
	
	

		
Chris is incapacitated in bed today with the flu and running a fever. I can’t recall when he was ever sick as a child or adult. Not a cold, not a fever, no ear aches, stomach aches, nothing. For the past month he’s been taking drops that are supposed to strengthen his zero functioning immune system, according to the naturopath. There is now something quite bizarre going on. Occasional flus and fevers are normal. Perfect physical health like Chris has experienced is not. If Chris’s immune system begins to function  (“if“)  will this mean that he will trade his particular brand of “schizophrenia” for different health concerns or more everyday health? The immune link interests me because my spleen was removed as a child due to thrombocytopenic purpura, which suggests that Chris may have an inherited autoimmune condition.  


Some recent research finding on the immune system courtesy of Psych Central



	


	





	

		
		
Lookin’ for keys in all the wrong places
	


	
	
	

		
The commenter I introduced in my last post also took issue with me for not being properly holistic. He referred to another blog post of mine and decided that I, in collusion with female psychiatrist and infantilizer, Dr. Stern, had forced Chris back on meds. No, it did not happen like that and what I wrote in the post he referred to does not detract from my opinions of the meds. (And, Chris, of course, could have refused the meds.) The commenter then pounced on me for my going along with meds which he felt is hypocritical of me since I claim to be “holistic.”  Since when did “holistic” mean anything but all-encompassing, perhaps leaning towards the natural?


This little anecdote is my way of introducing a bit of science into this post. I tend to question the scientific basis of “schizophrenia” because (a) nobody was using science to diagnose and treat Chris; when a bit of nutritional science was later introduced into his regime, it ultimately led nowhere; (b) where do you begin to look for possible causes?; (c) today’s “science” is tomorrow’s discredited science; (d) many people get better without resorting to science, etc. etc.


There are dozens of possible medical reasons that can produce psychotic symptoms in an individual. Only one of these medical causes may apply to the particular patient. Where do you start to look if science is not taking schizophrenia seriously enough to investigate your particular case? The problem with science in the past has been that it seems to have adopted an all or nothing approach for mental illnesses. The dopamine receptor theory was forced on just about everybody because treatment was relatively straightforward. Get everybody on the medication. Ask no questions.


There is change happening. While there is more and more understanding of the trauma informed aspect of schizophrenia and other mental health diagnoses, there is also growing interest in medical testing for specific conditions that have gone undetected in the past. 


From time to time I refresh myself on possible medical reasons for Chris’s condition, and nothing has jumped out at me as an avenue to investigate further. However, Chris recently consulted a new shaman who hooked him up to special machine originally invented to test the health of Russian cosmonauts. I’m guessing that this machine is the CMD-Prognos or something similar. The shaman (who I call the plant power guy) pronounced that Chris’s immune system is giving off absolutely no visible signs of life. Amazing Guinness World Records kind of thing. He gave him some vials of plant power extract to take. So, now, after nine years of looking, there is a possible medical cause – an immune deficiency disorder. The problem is, linking immune deficiency to schizophrenia and other disorders, is still in its infancy. Science just isn’t there yet. See the latest article in Scientific American. An Immune Treatment Finds New Uses for Mental Health. What the article doesn’t talk about is the expense for a single vial of this treatment. I’ve heard six figures. Can the shaman restore Chris’s immunity levels to something in the range of normal? Will this also clear up his tendency toward psychosis? Should we do further testing? Is there further testing we can do? 


Stay tuned.

	


	





	

		
		
Are mothers welcome in the recovery movement?
	


	
	
	

		
I’ve been thinking a lot about the recovery movement lately. Most of my contact with it comes through the Mad In America site. I recently got into an exchange of comments on the MIA site with a person who appears not to want to hear what I had to say because I was a mother, and therefore not a person who qualifies as having “lived experience.” The fact that mothers, too, have lived experience in the recovery movement is not respected in the recovery movement, I am sad to say. Many people in the movement have their own stories to tell about how their parents contributed to their problems. This particular commenter assumed because I am a mother writing about my son that I am an oppressor, an infantilizer, even a castrator, and kept pestering me to allow my son to speak for himself, which is rather a silly attack because there is nothing stopping my son from speaking for himself. He can create his own blog, get his own Twitter account and go for it. But I own my experience and I feel that mothers, too, have a place a the table, whether others in the recovery movement like it or not. Many in the more radical wing of the recovery movement do not want to hear from people who hold opinions that even occasionally differ from their own firmly entrenched view and the hit list includes parents, psychiatrists, people who accept their diagnosis, people who claim they can function on meds, people who believe that vitamins and diet cured them, people who think they have a brain disease, etc. Is the recovery movement big enough and sophisticated enough to learn from each other’s lived experience?

	


	





	

		
		
You, too, can write like Jim Gottstein
	


	
	
	

		
The Mother Bear Community sent me the following request which I am circulating. Please consider writing a letter to the appropriate persons (listed below) re the potential federal mental health policy changes that were discussed today in Washington.


Dear Rossa:


Fellow Mother Bear CAN advisor, Jim Gottstein, Esq., of President and CEO of the Law Project for Psychiatric Rights, has sent a letter to his State Senator stating his concerns about potential Federal mental health policy changes, including psychiatric (diagnoses) profiling, that may be discussed at Thursday’s Senate HELP Committee Hearing on Assessing the State of America’s Mental Health System. (HELP- U.S. Senate Committee on Health, Education, Labor and Pensions).


If you are in the U.S. and concerned about possible mental health policy decisions and would like to write a letter to your Congresspersons, State Senator(s) and/or the Chairman of the Committee, Tom Harkin, D-IA, you might find the links below helpful: 


PscyhRights Letter and recommendations (to review concerns and/or customize your own letter)
http://psychrights.org/2013/130121Ltr2SenMurkowski.htm
Names and contact information for Senate HELP Committee members (right vertical column).
http://www.help.senate.gov/

	


	





	

		
		
Presidential report ties violence to substance abuse
	


	
	
	

		
A recent article from Slate Magazine discusses the inaccuracy and stigma surrounding the term “schizophrenic.” The part of the article that actually interests me is the quotation from the presidential commission report in 2003 (President’s New Freedom Commission on Mental Health) that linked violence in schizophrenia to substance abuse. Isn’t it more than high time that the current presidential initiative on gun violence begins to ask the important questions: Could ingestion of legally prescribed brain altering chemicals into your body also be considered a form of substance abuse? If not, why not? If the answers received indicate “yes,” then, in order to prevent the kinds of violence we have witnessed in Newtown, Aurora, etc., what further initiatives can be taken regarding the widespread use of psychiatric medication by the general public? 


Slate: According to a 2003 report by a presidential commission on mental health, an alarming “61 percent of Americans think that people with schizophrenia are likely to be dangerous to others.” The report continues: “However, in reality, these individuals are rarely violent. If they are violent, the violence is usually tied to  substance abuse.”

http://www.slate.com/articles/health_and_science/science/2013/01/schizophrenia_definition_and_metaphor_schizophrenic_does_not_mean_multiple.single.html


Since it is highly unlikely that the current government will accept that logic that brain altering chemicals are brain altering chemicals, whether legally prescribed or obtained on a street corner or in the comfort of our own homes, then it is up to we the people, to say loud and clear, psychiatric medications are a form of substance abuse, especially when prescribed for too long, at too high doses, and in tandem with too many other medications.