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TOPIC TITLE: psychosis
Created On 6/4/05 11:02 PM
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Sarah
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5/15/12 1:11 PM
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Hi Dr. Lippa

Thanks for your reply. My daughter absolutely does not want to go on clozapine/clozaril as she has seen too many sick people on this med with terrible side effects e.g. drooling.

What is your experience with this medication?

Thanks

Sarah


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Sarah
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5/15/12 1:16 PM
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Hi Gad

Thank you for your encouraging words.

Kol Tuv

Sarah


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Lippa
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5/15/12 1:44 PM
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clozapine is a horrible drug with lots of side effects ... but there is nothing like it for getting rid of symptoms. In cases where no other antipsychotics work, clozapine often does. It can literally turn lives around. And it is the only antipsychotic which has been shown to reduce negative symptoms. Your daughter should not reject it without serious consideration.

Psychiatrists with a lot of experience of using clozapine get good at minimising the side effects (e.g. by using a medicine to stop the drooling) So despite the drooling (and - often - weight gain), it could be worth discussing with the psychiatrist.

Lippa
 
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Sarah
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5/16/12 5:23 PM
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Hi Dr. Lippa

As you put it, Clozaril is a horrible drug with lots of side effects and my daughter chooses not to go on it. Is there anything new in the US that we have not yet tried?

Thanks

Sarah


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Lippa
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5/16/12 5:59 PM
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Sorry. I do not work in the US and do not know what is available there.
 
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Sarah
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Lippa
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7/19/12 5:40 AM
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There has been a lot recently about the hypothesis that schizophrenia is related to inflammation, but this is the first I had heard of research into an antibiotic. Sounds promising, but clearly too early to know if it will be useful. I expect that patients will start using it anyway, in the hope that it will work. Unfortunately in the 36 years I have been in psychiatry there has been a number of such promising treatments, all of which turned out to be useless. Still, we have to hope (and daven)
 
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Sarah
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7/19/12 2:35 PM
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Thanks for your quick reply Dr. Lippa. Isn't it amazing that we get knowledge so quickly through the internet. We are certainly in Moshiach's times when new medicines are found. Are there any stories of mental illness in the Torah?

Thanks

Sarah


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Fishy face
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8/17/12 12:39 AM
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Hi!
I just found this thread and began reading through it. You seem like an amazing mother and your daughter is very lucky to have you. I am a frum girl with trichotillomania and I have another frum friend who suffers from it as well (we met in an online support group and figured out we are both frum). I do not suffer from schizophrenia, but I am currently doing an art therapy internship in a psychiatric unit with patients who suffer from similar issues as your daughter. I cannot say that I can totally understand what she is going through, but I just wanted to write to let you know that I wish your daughter a speedy refuah and that she is not alone in her mental illness.
Perel


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Dr. Lynn, Psy.D.
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9/3/12 3:36 PM
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Thank you sharing such beautiful feedback! May you have success in your journey as well, Fishy.
a lynn
 
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Sarah
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1/12/13 11:37 PM
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Hi Perel

Just came across your post. Thanks for writing. B"H my daughter has not pulled her eyebrows recently and they have grown back nicely. I find that when I give positive feedback to my daughter e.g. on her art, on her cooking, on her helping, on her reminding me to do something I may have forgotten, etc. she does amazingly well.

Unfortunately, she still hears voices. I think the results on the minocycline research came through Text

I would love to hear from the Drs. or anyone who has tried minocycline.

Take Care

Sarah


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Sarah
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1/12/13 11:42 PM
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Sorry the link in my previous post is www.scirp.org/journal/PaperDownload.aspx?paperID=25108 which opens up the pdf file.


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SilenceWillFall
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1/13/13 1:19 AM
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I've tried Minocycline, but for Depression/Bipolar NOS. If that still helps, what would you like to know?

The one story I know in the Torah about MI is that Dovid understood the entire Torah except for three things, one of them being Mental Illness. And when he asked Hashem about it, He created situations where those three things were able to save Dovid's life.
 
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Sarah
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1/13/13 10:48 AM
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Hi SilenceWillFall

Thanks for your post. What does NOS mean?

I was wondering if there were any instances of mental illness in the Torah. Do you know where to find the Posukim which talk about Dovid Hamelech asking the Rebbono Shel Olam about mental illness? I would love to look it up.

Thanks

Sarah


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SilenceWillFall
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1/13/13 11:47 AM
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NOS = Not Otherwise Specified.

It means that I don't have the classic symptoms of Bipolar I or II, but I do exhibit some of the tendencies/reactions that is shown to be in the bipolar spectrum, and current theory suggests that Treatment Resistant Depression actually rests within the Bipolar spectrum.

It's a Midrash; I forgot exactly where it is but I will try to research it for you.
 
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SilenceWillFall
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It is the Midrash Shocher Tov on Tehillim 34 - L'Dovid B'Shanoso
 
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Lippa
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1/13/13 12:59 PM
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The recent paper on minocycline makes interesting reading, thank you Sarah. It is certainly not yet in the awareness of psychiatrists on this side of the Atlantic. Although only one or two double-blind studies do not make a convincing case, the apparent lack of side-effects makes it worth a try in cases where conventional medication is insufficient, in my view. But I still think that your daughter, Sarah, should not reject clozapine out-of-hand just because of side-effects. It can transform people.
 
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Mimi1022
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1/13/13 1:02 PM
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Minocyline for mental illness is not yet FDa approved. If you would like to enroll in a clinical trial you can search clinicaltrials.gov to see if you are eligible.
Good luck!
 
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Sarah
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1/14/13 7:19 PM
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Hi SilenceWillFall

So what does Midrash Shocher Tov say on Dovid acting insane?


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Sarah
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1/14/13 7:25 PM
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I hear you, Dr. Lippa, but my daughter is adamant. I would like her to try clozaril, yet it is her decision. Hopefully we will be able to pursuade the GP or psychiatrist to prescribe the minocycline after I receive the correct dosages etc. Will let you know.

Sarah


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Sarah
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1/16/13 8:16 PM
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I see another study being done on The Benefit of Minocycline on Negative Symptoms in Schizophrenia: Extent and Mechanisms. http://www.eme.ac.uk/funded_projects/PDFs/0910023protocol.pdf
I wish there was a study being done closer to home.


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Mimi1022
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1/17/13 2:03 PM
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Sarah:

I wish you all the best with your daughter. I myself was diagnosed with schizophrenia.
It took a while to learn to manage schizophrenia and have a successful social and professional life. To be honest- it's not easy but can be done. I work full-time in finance (wealth management at a large bank). If you would like to hear more I'd be happy to share my experience with you.

By the way, how is your daughter doing currently?

 
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Sarah
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1/17/13 9:29 PM
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Hi Mimi

Of course I am very interested in your handling of schizophrenia. How would you like to communicate? You could email me at mitzvahgirl@hotmail.com and we could talk by email or you could post on frumsupport and let others gain from your experience. Whichever way works best for you will be my pleasure.

My daughter is very high-functioning according to her psychiatrist and she cooks and spends time drawing and painting and writing poetry is a favourite of hers and she plays piano and knits and spends some time watching videos, etc. etc. We have a white cat for a year and a half and she is close to her.

BE"H we are hoping to be able to take part in the minocycline study and I am sure that will help her loads. I'll iy"H keep you posted.

Take Care

Sarah


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Edited: 1/17/13 at 9:31 PM by Sarah
 
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Mimi1022
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1/20/13 10:40 PM
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Hi Sarah:

I don't know the details of your daughter's situation, obviously. I'm very sorry that she has had to go through all this.
Here is the advice I would give anyone going through schizophrenia:

1. Don't take the delusions/voices seriously. At least a couple times a month I hear voices making fun of me, and I believe people are plotting to kill me. However, the main lesson I've learned in remaining stable is just to remember that it's all in my imagination. I even try to laugh at it sometimes. When I hear voices, I just do something to distract myself and then it doesn't bother me anymore. When I feel like people want to kill me I just remember it's not really true. It takes practice but once you learn this mindset the symptoms can be a lot less frightening.

2. Medication has its limits. There is no magic pill, or any pill that will make all the symptoms go away. This might be hard to hear, but part of it is just learning to identify your symptoms, know how to handle stress, and that's about it. It gets easier when you learn not to have such high hopes for the meds. In a nutshell: just pick the one with the least side effects.

3. Doctors don't know everything. Every doctor I go to will tell me something different. On the other hand, it's important to trust medicine in general. I don't buy the whole alternative medicine thing because it's unproven, but if it makes someone happy they can do whatever they want. I just think its a waste of money. Bottom line is I trust my doctor and have a good relationship, but if any doctor will tell me I'm doomed to a life of living on disability because of schizophrenia, I would be reluctant to trust that doctor.

So that's what I've learned in a nutshell in the past 4 years. Through my psychotic episodes I've managed to get through college, a master's program, and work full-time. Don't mean to brag, I'm just saying it can be done. Let me know if you have any questions
 
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Sarah
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1/21/13 6:52 PM
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Hi Mimi

Thanks for writing. What medication are you on currently? My daughter is on Abilify 30 mg. My daughter knows the voices are not real. She tried to register in college but it hasn't worked out as yet. She had enough of participating in mental health groups because she is high-functioning and the others are still struggling with their mental illness.


It is indeed wonderful that you are in the large bank position. My daughter is more interested in the creative arts e.g. writing which she finds beneficial.

What can you recommend for anxiety experienced at home?

Thanks

Sarah


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Mimi1022
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1/21/13 8:35 PM
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Hi Sarah!

It's great to hear from someone familiar with my experiences.

I also have anxiety. Therapy helped me out tons. I also read "Anxiety for Dummies" and on an occasional basis I take clonazepam.

I was on Saphris but I'm currently on a break from medication (which I do about 1-2 times a year under doctor's supervision). Next week I'll start on Latuda in the context of a research study.

In terms of mental health groups, I see your daughter's point. I stay away from them- not because of my level of functioning, but because I don't want to adopt the role of a chronically ill person. One of the best pieces of advice I got was to not think of yourself as a sick person. I feel like if I participated on groups such as NAMI I would think about schizophrenia more than I needed to. However, if I came to a point where I felt I needed support I might look into it.

How does your daughter feel on Abilify?
 
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Sarah
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1/22/13 5:33 PM
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Hi Mimi

Did you take cognitive therapy for the anxiety? My daughter also has the book Anxiety for dummies. I must look up Saphris as I haven't heard of it. Do these anti-psychotics make you gain weight? My daughter put on a lot of weight lately. My daughter is good on Abilify except that she still hears voices and has hallucinations some of the time.

Please let us know how you are on the latuda.

Take Care

Sarah


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Mimi1022
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There is a group of new antipsychotics that don't cause weight gain- is abilify is one of them? Also Latuda, Saphris, and Geodon don't cause weight gain I believe. I'm interested in research drugs- I don't know how you feel about them but there is a Lilly drug out there in the trials that doesn't cause weight gain. I can get you the name of it if you're interested.

I specifically went for a medication that doesn't cause weight gain. I was on the stuff that makes you gain weight; after I switched to Saphris I did a special diet for 6 months and lost 30 lbs that I had gained from the medication (the diet was the low glycemic index diet)

Medications may not be able to take away all the voices/hallucinations.

I go to a therapist twice a month. Baruch HaShem, I can afford this. For me it's been extremely helpful and I wouldn't be as I am today without it. I'm a very strong believer.
 
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Sarah
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1/22/13 9:26 PM
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Mimi,

Of course we are interested in anti-psychotics that don't cause weight gain. I myself would like to lose at least 30 lbs.

I find it amazing that you have such a good job and that you lost so much weight. You must have lots of will-power.

What kind of therapy do you have?

Take Care

Sarah


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Mimi1022
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1/23/13 9:20 PM
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Thank you for your kind words.

I'm not sure what type of therapy it is.
 
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Sarah
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1/25/13 3:52 PM
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Hi Mimi

When you find out, please let us know. We are interested in anything that can help.

Kol Tuv

Sarah


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Lippa
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8/19/16 3:24 AM
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Hello, Sarah,
It's a long time since we 'spoke'.
I was wondering how you and your daughter are getting on
Good Shobbas
Lipa
 
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Sarah
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Hi Dr. Lippa,

Thank you for your interest. I'm sorry I didn't see your message as I don't log into this email account very often. I just cleaned it up and saw your message.

My daughter has moved into our basement apartment since she wanted to gain some independence. She has a cat for company. She is currently in university and doing okay.

A few years into her disease, a Dr. thought that my daughter's disease emerged from her high copper, lead and cadmium toxicity. Although my daughter is regularly taking her meds, she would like to try to cut down and get off them with her psychiatrist's help of course. She still hears voices and has tactile hallucinations.

When she tested for food tolerance in 2008 there were only 17 tolerated foods that came up on her test.

She is pretty careful what she eats but is overweight from the meds.

Are there any significant updates in the mental health field?

We're always interested in hearing your suggestions.

A gutte voch!

Sarah





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Lippa
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12/11/16 1:04 PM
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Good to hear from you, Sarah. And also nice to hear that your daughter is in university. Maybe she's able to deal better now with the hallucinations.
I am afraid I can't comment on what another psychiatrist has told her about deficiencies in minerals etc. But as far as I know there have not been any new developments in the meds field that would be of help to her. (I am a little out of touch at the moment, having made aliya: until I have a license to practise here in Israel, I am only doing medicolegal work).
B'Hatzlacha!
 
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Sarah
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12/11/16 7:24 PM
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Dear Dr. Lippa,

So glad you made aliya! I hope you get your license to practise medicine really soon!

Let us know if any new therapies come your way.

Kol Tuv,

Sarah


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Sarah
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5/24/17 6:21 PM
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Hi All,

We are no doubt in the Ikvesa d'Meshicha era where ISIS terrorism has gone barbaric and is rampant across the globe. There are many newly found remedies for illnesses. If you hear of anything new in the field of schizophrenia please post to this group!

Thanks

Sarah


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