I was just kicked off of the other site because my DD is the one suffering. The problem is, she has no voice, so I was really hoping to hear from other who are living and coping with this. She is intellectually disabled and woke up 14 weeks ago today in full psychosis. I did not even know what psychosis was. She is apparently treatment resistant because there was NO improvement with meds which also made her extremely sick. We’ve had the most gains with high doses of CBD at 200mg, 400mg and she is currently at 1000mg daily, but next week we will be taking her back down to the 400mg. We started her on Niacin (no flush) and are on week 2 of that (18 days) and are seeing new gains also with her not talking to herself non-stop. She is on 6000mg on that but taking her up to 10 if needed. (Yes, I know it’s high). We also got in Amyloban 3399 last night and she had her 1st dose last night. She also is on a very strict diet with all organic, no processed foods or sugar, no gluten, no corn. We also supplement her with Vit. C, and a multi-superfood. One interesting thing we did was a Myers Cocktail IV. The following day was the best day she has had and it makes me conclude she is not fully absorbing meds orally. Sure wish I could get CBD iv done. It would be well worth the cost. So hello everyone…here I am, sad the other site kicked me out so I could be my daughters voice, but hoping to find ideas, thoughts, hope and encouragement here…
The best alternative treatment I know of that works in a short while is Amyloban 3399, which takes at least a week to notice a real difference with. I rely on this stuff for normalcy.
The Niacin is kind of a mixed bag with risks involved that are methylation based.
A good diet helps, and protein avoidance can reduce the intensity of her hallucinations (protein increases tryptophan levels, which, due to a defect in the kynurenine pathway in schizophrenics, becomes an excessive amount of kynurenic acid which manifests as an increase of schizophrenia symptoms.) As a bonus, avoiding protein can help with depression levels, as the high tryptophan levels outcompete serotonin for uptake, and you need serotonin to feel good.
A person doesn’t really need that much protein to flourish, either. A mother’s breastmilk only has 5% protein, which is enough to support a baby during his most rapid growth period, for example.
There’s also this thread which points to two herbal medicines, Yokukansan and Wendan Decoction (Wen Dan Tang), with studies showing they help schizophrenia symptoms, but I can’t personally vouch for them, having not tried them yet.
Thank you so much for your response. I cried when they kicked me out of the other forum as I really feel she needs a voice and I need to understand. But, I suppose it is what it is. Your posts on the Amyloban was what convinced me to give it a try. I cried again when I saw you had reached out through this “family forum”. I had no idea about the tryptophan, very interesting. I feel like I have learned so much-I suppose out of deparity. She really doesn’t eat high doses of protein but diet it VERY strict. The niacin I feel has made some significant gains, but I’d like to see the odd delusions go away. I’m not convinced she has hallucinations (auditory or other) so much as delusions. She gets these very strange ideas and it just is vocalized-ALL DAY. They are mostly about kids she went to school with or going to cheer practice, riding the school bus etc. It’s the delusions where my husband and I are dead that brings her to tears. I then after some time am able to convince her I’m not dead and her head is playing tricks on her but to her its terrifying and depressing. Fortunately, our home life is very calm and peaceful so very low stress except what she brings to the table from these irrational fears and terrors. We live on a small farm so lots of quiet and serenity around. May I ask are you doing recommended dosing for Amyloban or a higher amount? Thanks again…
Feel better! There is an ongoing effort to find good treatments for schizophrenia. Hope should be in the antipsychotic field for that end.
The herbs are just to take the edge off of symptoms, I don’t think they will completely turn them off. I haven’t tried the Yokukansan or Wendan Decoction yet, though. They might accomplish that, since studies show they work for schizophrenia.
As for Amyloban 3399, please don’t raise the dose from the suggested 6 pills a day (1950 mg). There may be side effects from that.
IMO, you should put no trust in medicine that has zero scientific backing, like homeopathy or energy healing. Waste of time and money.
BTW, you were not kicked off the other forum, you just can’t make posts about ill family members there.
I’m currently testing 9.5 pH alkaline water, 2-3 litres a day, to reduce my head pressure and SZ symptoms. It definitely is healing my brain, since it reduced my chronic 8/10 headache to a mere 3/10 dull pressure.
Ionized Alkaline water is great, as it is more hydrating that neutral pH water, since it has smaller, 6 molecule clusters than the 40 molecule clusters of neutral pH water.
When you drink that water, the body takes it up more readily than regular water, and you just naturally and effortlessly “hold it in” for hours afterwards, whereas neutral pH water has you relieving yourself minutes after drinking it!
And, considering that the body is 70% water, and an alkaline-leaning blood pH facilitates healing, it’s worth a try! Just remember to take meds 30 minutes before or after drinking alkaline water.
I agree with your other post about hokus pokus things. My MIL was insisting I purchase a Rife machine. I tried explaining to her that my pockets are not that deep since I’m spending a ridiculous amount of $ on CBD and additional supplements right now. CBD alone for 30,000mg is 600.00! But I agree, no science, I can’t do it. I just can’t.
It’s funny you mention the alkaline water. My husband just mentioned that last night, I told him I hadn’t really heard anything (until not) about alkaline water. (We have friends who tried selling us a Kangen machine at one time). Plus, she is super dehydrated apparently. Which, I may add I cannot understand. She drinks at a minimum 128oz a day of water. That does not include herbal teas. Or “extra water” she gets on herself. I upped her salts/minerals for better absorption but maybe the ionized alkaline h2o may be a suggestion. She had a procedure done which required iv and they couldn’t get to a vein. They had to really work it, but finally got one it. When I told her how much she drank, they didn’t seem to believe me. Thanks for the tips…
Glad to help!
Kangen machines are a rip-off, and Rife machines don’t seem to do anything meaningful to the body.
The water ionizer brand I use is Augienb, which is $500 USD. But I suggest just buying alkaline water from Whole Foods ($1 per gallon per day, but don’t store it for more than 2-3 days otherwise it loses ideal alkalinity) and seeing if there is any change in her behavior and comfort level.
You might confuse the Amyloban recovery with the water recovery though. Also, the water has to be taken for around 4 weeks min to notice real changes.
Where do you get ionized water?
Water specialty shops, or Whole Foods.
If you’re convinced the 9.5 pH alkaline water works better than tap water, then I’d recommend the Augienb water ionizer, which costs $500 USD.
I’d like to differ naturally cured!
I know energy healing sounds hocus pocus
But is very powerful stuff
Definitely don’t waste your money on this when you can make it happen from the comfort of your own bedroom
And more than alkalized water
I support distilled alkalized water to be incredible stuff
And I would get into a ketogenic diet with a magnesium citrate powder to help with neurosis and body.
Amyloban 3399 should be here today
An add on I would suggest is:
*shilajit is a staple
*i am currently replacing my lions mane with amyloban3399
*CBD high quality
*ormus(Monotomic gold)uretheum gold is the more natural substance[this substance needs a lot more research.but they call is big pharma killer
Take at your own risk .
Diet and exercise is so important
The diet one should try should be ketogenic
We tried every diet
We were able to stop our APs of 13+years using
Was on high invega sustenna 234mg…
We are still on our journey of recovery
From damage the Invega has caused!
Hope this helps
B is on a mega high dose of CBD oil. I am sourcing it from a reputable organic company, but what I am able to get is not available to general public. Because of the high dose (1000mg daily) I purchase “amber” which is basically pure CBD oil, which I then mix with MCT. Another place I tell people to use is Ambrary Gardens. There product is superb along with customer service. They also offer a 30percent discount program. I purchased their 5000mg bottle for 204.00 which is the best price available in general market place. It too is organic.
AMYLOBAN: 4 days now.
KETO: We have her on a combo of keto/paleo. She did not do so well on the strict keto. Once we added in a bit more healthy carbs it improved greatly. But I agree with a clean eating regiment. NOTHING she eats is processed-simple ingredients, I cook everything she eats. She has some digestive issues we’ve just discovered and are having to address those along with trying to keep her on a clean eating. She has a slow digestive system…(14 hours after eating undigested food in the stomach). We had an endoscopy done last week because of her throwing up bouts again.
EXERCISE: We purchased a vibe machine, yes, laugh as you wish because I certainly did. Besides regularly walking, we incorporated this and she seems to enjoy the vibrations. It helps stimulate hormone and lymphatic system. We also have an infra red sauna we use when we can get her in it, (which I wish was more). She hates to sweat. We also try to take her to the trampoline park 2x a week.
ADDITIONAL SUPPS: Dr. Schulze’s superfood, Vit. C, B125, Chelated Magnesium, Emu Oil, Lithium Ortate (not sure on spelling), Digestive Enzymes, and LUMA.
She has not been on any Rx since we took her off of Olanzapine which caused her to pass out-frequently. That was about 6 weeks ago. Overall we’ve had gains, but nothing like WOW!
I’m trying to accept this “psychotic state” she stays in. I miss her, I miss talking to her. She just talks randomly all day.
So she is not on any medication at all right now?
How old is she
And has she been on antipsychotics?
And for how long has she been on antipsychotics if so
No Rx medications. B is 21 (almost 22). When psychosis began the Thursday before July 4, it took almost 2 weeks before I could get her medication. Initially started on quietpine (sp?) which she was on for 2 weeks, then put on Olanzapine. Every week she was dosed up and every week she was falling all over herself, she was in the pool EVERYDAY and never tanned-just looked pale, always. She was taken up to the 20mg mark, I took her in to psychiatrist with what looked like a red eyeliner on upper and lower lids, sagging eye lids and glassy eyes and Dr. said, she looks sick. YES, very, very sick. We suspected a physical reason, went through neurologist, urologist, everyone says she is fine. I told psychiatrist I was taking her off all meds, including Paxil since it was not appearing to have any effect. Once she was weaned off we began using CBD and slowly increasing dosage. All symptoms (sleep, restlessness, twitches, agitation, yelling, pacing) improved, EXCEPT the never ending talking to herself. The best way to describe it is this “alternate reality”, she belives at time she’s 13, 18 etc. It all points to her being “back in school”, her friends whom are in “group homes”, sometimes my husband and I are dead-(that’s a really bad day), someone has bought or house and are going to kick us out, etc. We’ve lived in the same home for 12 years-thank God it’s way in the boonies or we’d have real trouble with the noise, homelife is very calm, her Dad and I have been married for 25 years, get along great, no arguing in the house and she has twin sisters who help in her care.
She is also intellectually disabled, but high functioning.
How incredibly frustrating!
I’ve worked a lot in hospital settings and from what you describe, my first thought is also that this is a delirium/secondary psychosis due to some underlying physical cause rather than schizophrenia or a primary psychotic disorder (which are essentially diagnoses of exclusion meaning “we don’t yet understand why this is happening and we don’t yet know how to fix it”).
Where have you done the workups? If there is any way to get your daughter to a good medical center (teaching hospitals tend to get the tricky cases and so can be better with complicated diagnostics than community hospitals or outpatient offices), it might be worth a shot.
How long has it been since you got her off the APs?
Yes, delirium was first thought. (Still is possibly) with Medicaid nobody wants it plus add an intellectual disabled person. Nope!
6 weeks ish. Her overall health improved dramatically without Rx. I feel like I’m ‘medicating her’ just not on traditional AP meds. The high dose CBD I feel has helped with many of the symptoms. Just these ‘delusions’?!? I’m not convinced she’s hearing voices it seeing things, but her mind convinced her people are "in a room’ although she’s not seen them. Or a friend from school is in a group home, how did you hear that, I don’t know. I’ve asked her if someone told her and she always says no, but she’s still fully convinced of the story in her head.
Yes, visual rather than auditory hallucinations would also be more consistent with an underlying medical condition. So awful that you will not be able to get proper diagnostics.
Well, under the circumstances, I think you are doing what you can. APs are prescribed for delirium, dementia etc. but my understanding is that they are less likely to be effective in these situations.
I’d keep pushing the physical diagnostics, especially with any changes in her condition.
Has she had a head MRI and if not, will Medicaid do this?
The Sunday after break I took her to ER for ‘anything’ to explain why this happened. The found a distended bladder with no infection (found that out later) they did a Foley and I had follow up 3 days later with urologist. He said, she’s fine. I went off and he walked out. Next was pushing for MRI, finally GP conceded and ordered MRI/MRA as this is mimicking dementia. Neurologist sat me down like I was 3 and have me her ‘credentials’ and Brandy is fine. Even though there were some odd things on MRI. But she told me it all looked fine. OK, so then B starts throwing up randomly again. (Dealt with this in the past) so back to ER for IV because I knew she was becoming dehydrated. Got into a gastro Dr who scheduled a scope. Had that Friday. He did not believe me when I told him she hadn’t eaten because he informed me of undigested food in her stomach 14 hours after anything. (Liquid or otherwise) I KNOW she didn’t have anything b/c prior to break we started locking kitchen because she’s go in there and eat. So, he informs me, must be her meds, I told him she only taking natural supplements, again strange look. Are you SURE he asked? Yes I say in my most polite voice. Then he asked if she was diabetic. Nope. Again I get there ru sure? Yes! He three up his hands and said she has no blockage, must be nerve damage. I said from what? His answer, I have no idea. Now, I’m pushing for PET scan. Her GP I believe thinks I should be in antipsychotics! But, she had this birth mark on her face that had always been a tell tale sign that she was getting out was sick. I always knew when she needed some Vit C to start fighting something. Then when she’s well it’s unnoticeable. This had been shining bright since this started.