Candance (Nebraska) on 03/19/2015
Just recently I started doing more research and I have found is some new research that looks fairly promising.
"Glutamate is the main excitatory neurotransmitter in the central nervous system. Dysfunction of the glutamatergic system plays an important role in the pathogenesis of schizophrenia.
Schizophrenia is associated with low levels of Beclin-1 in the hippocampus of the affected which causes diminished autophagy which in turn results in increased neuronal cell death.
It is observed that biotinidase, which maintains biotin levels, is very sensitive to oxidative stress."
So with the above in mind, I started to research what would effect the Glutamatergic system and also the beclin-1 and also help with oxidative stress.I discovered they have been running some trials using Sarcosine and N-Acetyl Cysteine.
"Sarcosine (N-methylglycine) is a naturally occurring GlyT1 inhibitor that has been used in early clinical trials in Taiwan. Initial studies with sarcosine showed efficacy similar to - and in some cases better than - that of direct glycine/D-serine site agonists when added to first-generation or non-clozapine second-generation antipsychotics. Sarcosine also has been found to be effective for acute treatment of schizophrenia."
One study administered N-acetylcysteine, a glutathione precursor, as a potential treatment for persistent negative symptomsEncouraging clinical results were observed in this double-blind study, along with improvement in negative symptoms, and overall functioning.
To address the low levels of Beclin-1 in the hippocampus of the affected which causes diminished autophagy which in turn results in increased neuronal cell death. I found that Trehalose reduces p62/Beclin-1 ratio and increases autophagy in the frontal cortex of ICR mice, possibly by increasing Beclin-1.
"biotinidase, which maintains biotin levels, is very sensitive to oxidative stress"
To deal with the Oxidative stress I have found that Cold Pressed Krill oil and astaxanthin appear to be the best course of action I can find.
So to sum it up...
This is our new course of action:
1,000MG twice a day of Sarcosine and N-Acetyl Cysteine via Profrontal a natural product designed to support
NMDA Receptor function
1250 MG Cold Pressed Krill Oil
4 MG Astaxanthin
Trehalose ( sub-lingually ) Not sure on the dosage of the treholose yet
We where going to try CBD Oil (cannabidiol) as they had a very promising clinical trial in Germany where the CBD Oil had the same effects if not better than the typical anti-psychotic medicine without all the side effects of anti-psychotics. BUT the cost would be a minimum of $1,500 a month and only be available in states that had legalized medical marijuana. Yes, you can buy CBD Hemp oil via the mail but the quality and source is very questionable.
I will update my post going forward if we see improvement.
Â
Replied By Candance (Nebraska) on 06/20/2015
Replied By Edwards (North Carolina) on 10/21/2015
Replied By Candance (Nebraska) on 10/22/2015
Replied By Naturallygood (N Ireland) on 01/13/2016
Replied By Leena (Arizona) on 06/27/2016
Would you you please tell us more about the current treatment for your son. Some of us really need help. Thank you so much.
Replied By Nichole (Usa) on 12/12/2016
Replied By Candance (Nebraska) on 12/13/2016
We have since found out my son has Mast Cell Activation/Mastocytosis.
What is Mast Cell Activation....
This may not be the technical terminology, but this is what Jeff deals with.
Everyone has mast cells, it is what gets triggered when you get stung by a bee or are exposed to pollen or other allergens.
The mast cells get activated and release histamine in response. Hence the anti-histamine medication.
There are mast cells everywhere in the body even in the brain.
When someone has Mast Cell Activation (MCAS). The mast cells inappropriately are releasing histamine and can be triggered by about anything. Think about the bubble boy who had to live in a bubble because he was allergic to everything. But now take it a step further, because the mast cells in MCAS do not even need a trigger but add a trigger and things start going haywire. The hard part with this illness since there are mast cells everywhere in the body, the symptoms can be varied and effect different parts of the body, making it very hard to diagnosis.
You may have severe gut pain, swelling in the abdomen, chronic diarrhea, vomiting, skin flares, rashes, itching of skin, sores that take forever to heal, blood pressure issues, swelling of different parts of the body, tongue, throat, face, lips etc, depends where the mast cells are getting with the program. Then there can be seizures with nothing showing up on eegs. Numbness of body extremities making it difficult to walk, clumsy and unstable on feet and in son's case, dropping stuff all the time.
It can cause hypothyroidism, blood sugar issues, susceptible to infections, sometimes one right after another. It can effect the lungs and cause asthma. It can also cause the joints to become disjointed easy which usually ends up with a diagnosis of ehlers daniels syndrome. Two of the worst symptons in my book is the anaphylaxis shock that some people experience on a far to often basis and the mental symptoms which can be anything from, ocd, hallucinations, delusional thinking, fight or flight, mild confusion and agigtation. Which in turn makes it almost impossible to get anyone to take you serious about your wild varied health issues, it is chalked up to your mental state...its all in your head. In turn causing more stress because after years of no one and most importantly the doctors, believing you, you develop PTSD from going to doctors and not being taken serious when you are actually are really suffering horribly everyday. Losing friends and family members because they give up on you or think you are just out of your mind.
Then to make matters even worse, people with MCAS react to most fillers and dyes used in medications. Many people need to have medications prepared by a compounding pharmacy to avoid the fillers and dyes. But until you identify what you are dealing with the medications prescribed actually can and usually make you worse. A horrible vicious cycle. It may sound crazy but some people with MCAS, wish for anaphylaxis type shock just so the doctors will take them serious. It is pretty hard to ignore there is a problem with someone that is going into anaphylaxis shock several times a week.
What is wild, I have not even hit on all the symptons of this illness. But the good news is there are clincal tests they can run to identify the illness. The hard part is the medical field is so compartmentalized, it is hard to get the doctors all on the same page and looking at the patient's complete medical history and issues to see that no person is so unfortunate to have 7 or more separate medical problems and there might be something else behind this causing all this.
My son had/ has the following medical diagnosises in his records
Allgeries
Asthma
Hypothyroidism
Hypoglycemia
Gerds
Schizophrenia
Bipolar
Schizoeffective Disorder
Tramatic Brain Injury ( I might add with no trama to the brain ever taking place)
Possible temporal lobe epilepsy
Bradykinn
Anaphylaxis shock to demerol
Celiac
Paresthesias of the extremities
Chronic athletes foot not responding to treament 15 plus years
Angioedema
Myofascial pain syndrome
Inflammatory neuropathy
Adrenal insufficiency
Double vision (forget what the eye doctor called it)
I forgot to add some of the triggers for this illness, which really make this illness hard to live with and usually is what separates you from friends and family. Mainly because while all the below maybe a trigger, it all depends on what you have been exposed to that day. It is like a bucket. Maybe you are exposed to an odor, then add a bit of stress, then a food. Each time your bucket gets fuller. Its when the bucket overflows is when you start seeing reactions. So you may get away with eating an item or being exposed to some odor today, but tomorrow it might be the item that overflows your bucket. Hence you are faking it, or just over dramatic about your sensitivities. You ate it yesterday, or I came over yesterday and what ever was ie, perfume, hair products or dryer sheets did not bother you. So you obviously are just making this up.
Foods
Odors
Chemicals
Cleaning products
Perfumes
Dyes
Voc's in carpet, building materials etc etc
Stress ( sometimes as simple as a coversation or answering a question)
Vibrations (riding in a car)
Physical exertion
Heat
Cold
Water yes tap water causes skin reactions and even drinking tap water
Soaps
Spices
Dyes and fillers in medications
Emotions
About anything and everything can trigger the mast cells to degranulate
Not everyone has the same symptoms with this illness and not everyone has the same triggers.
If you suspect this might be what you are dealing with or your family member is. Find a allergist that is familiar with Mast Cell Activation
and have them test for high tryptase, prostaglandins, leukotrienes and 24 hour histamine levels.
With my son we have found he was reacting to the fillers in medications. Mainly dyes, lactose and casien.
He is now doing fairly good taking LIQUID haldol as it is also a mast cell stabilizer and liquid ativan as it is also a mast cell stabilizer. And he is drinking stinging nettle and holy basil tea. Dye free benadryl has become our rescue med.
I hope this helps someone.
Replied By Carol Petersen (Wisconsin) on 06/25/2021
DPP-IV can help with mast cell problems. Here is a monograph from a lab that tests for this:https://www.greatplainslaboratory.com/dppiv
A product that has the highest level of DPP IV in the industry is Glutaxym by US Enzymes.
Contact them if you are interested.
Replied By Gail M. (Pa) on 06/26/2021
I have studied nutrition for over 50 yrs. I have studied my Bible longer. I believe in healing. This needs Godly intervention. Jesus heals. I have prayed over many.
Replied By Pippa (Uk) on 03/14/2018
Unfortunately, her way of coping has been to turn to alcohol- which also affects histamine levels. It is a viscous circle. I am desperate to help her, but don't know where to turn to. I think I may ask her to try the Benadryl.
I will never give up searching for the answer. I just want her to be able to live a normal life . Underneath all this she is a loving, intelligent, attractive girl, but is so lonely trying to fight this alone. There is no help for mental health victims in uk.
Replied By Joseph A. (Stockton, Ca) on 06/25/2021
@Pippa,I just joined, am following Candace, I read your message regarding taking Benadryl, I wanted to inform you that Benadryl has been used for years (40's thru 60's) as a sleeping pill, take 50mg go to sleep, wake up middle of the night, take another to fall back asleep. Not habit forming, however long-term use can cause memory loss.
The same as Valiums (Benzodiazepines) they work great for weeks, however Benzos are Addictive, extremely hard to quit (can't cold turkey these, will end up in hospital) they are only for short-term 4,5 weeks, however, Drs do prescribe for years, then the tapering off comes into play being painful, dangerous, even Death can occur. Years after withdrawing from system you can have relapses. I am not familiar with your story, however, I have posted about Serpina (Indian Snakeroot) great for psychosis, calms the mind, Anxiety, insomnia, however, interacts with Antipsychotics, cold flu medicines like Benadryl. 1934 was used for hypertension, so it may lower it a little if you elect to use. Thank you. Joseph
Replied By Lizzy (Jacksonville, NC) on 09/23/2021
It all starts in the gut, Dr. Pedre has a good book and supplements, along with diet for 28 days, works amazing on many many ailments including mental illness.
Replied By Joseph (Stockton, CA) on 06/22/2021
I too have a son (53) with schizoaffective (2007) I wish I could send you some of my paperwork regarding similar things that your working on, but we're not allowed, therefore I will type to you what I have and have been doing. My son was diagnosed with chronic paranoid schizophrenia in 2007, 6 weeks in VA hospital, then returned home for 6 weeks and I saw what Antipsychotics were doing to him.
He gained 50lbs, slept 18 hrs daily. I was a retired SF, Ca cop, had no formal training in Schizophrenia, went to the library and read all I could & took notes. I immediately stopped ALL medications that were prescribed, Especially the poison of Antipsychotics. I had him taking about 90 pills total daily, many were tiny Chinese pills, etc., as my son improved I got more involved with Orthomolecular Medicine.
This is what I gave: B3 Niacin 4,000-6,000mg; Vit C same dosage; B-Complex 100mg, Vit D3,5000iu; zinc 25mg, L-Theanine 800mg (400 AM- 400 PM) and then his Antipsychotic drugs.
Eventually I contacted a Dr Michael Lessor (84yrs old now) hee was great friends with Dr Abrams Hoffer, both Jewish and worked together, he added a few more supplements & I learned a lot from him after 2.5yrs (retired living in Berkeley hills, Calif.)
I stopped seeing Dr Lessor (a long drive) and started using Serpina, which is my greatest find, a former blood pressure medication from India in 1934. Dosage: 2 4mg pills 3X Daily (6 pills) then I changed to: 3 pills morn, 3 pills at nite (always 6 pills daily), after time I changed back to 2 pills 3Xdaiky, he excelled for about 8 yrs, no one knew he had schizophrenia.
Then he contracted OCD, that was another nightmare, after keeping him home and giving many formulas that just didn't work for him I had to bring him to VA hospital and they immediately gave him Prozac, Risperdal. I had to stop Serpina because they interact. I reduced his 6mg Risperdal to 1.5 mg, and he contracted Tardive Dyskinesia, (Severe) he stayed in the house, Agoraphobia set him.
His Dr was/still is an idiot, so I gave him a formula of BCAA (branch chain amino acids) plus B6 300mg divided dosage. In 5 weeks he was significantly better. I stopped my formula and TD returned, I put him back on the same formula, once he got better again I continued for 3 months then stop, this allowed him not to relapse.
Today he is okay but my goal is to remove Antipsychotics and put him back on Serpina. He is now addicted to Valiums (Diazepines) thru no fault of his and having Severe Anxiety Attacks. (Candace I will leave you more info at the end, ) he can't be tapered off until Anxiety stops and I have nothing to fight his Severe Anxiety (can't give him Valiums) and tapering off is painful & Dangerous, relapses can occur years later, etc.,
I recommend you give your son 15mg Manganese 3X's daily (45mg) while he is taking Antipsychotics, this may prevent him from contracting Tardive Dyskinesia. If he contracts TD start with BCAA 1,000mg 3Xdaily for Week 1 and give him B6 100mg 1pill 3X daily. Week 2 increase BCAA to 2,000mg 3X's daily and give B-Complex 100mg in morning. Continue that, I think on an empty stomach with BCAA, just Google that question. I have the info somewhere here but want to send this to you right away.
Ultrasound improves brain performance (non-invasive)
TMS Transcranial Magnetic Stimulation is very expensive and it appears to really help, however it did not help my son.
Please Google any new supplements or alternative treatments until you google for interactions.
NAC N-acetylcysteine is a supplement form of cysteine, good for Brain Health. NAc helps replenish Glutathione, your body's most powerful Antioxidant. It's antioxidant properties also combat other ailments caused by oxidative stress, such as Heart disease & some Psychiatric conditions.
Ketamine is available, fights Anxiety in a few hours versus 2-4 months before medications fully kick in.
NAC may also alleviate symptoms of multiple psychiatric disorders & reduce addictive behaviors.
marijuana may help fight Anxiety, and the voices but is very addictive after long- term use.
voices, ear plugs can muffle voices, headphones.
Do not consume Sugar or Sugary products.
Voices, my son communicates with (3 voices) does not believe he has Schizoaffective as well as many others.
If you talk to your son and he doesn't answer it is because he may be communicating with the voices and not disrespecting you.
Please don't argue or fight with him.
Mulungu pills help fight anxiety and brings calmness
Jujube Asian fruit is supposed to help, I am curious, just can't afford all options.
Schizophrenia may in part be caused by immune system dysfunction a new study reports. Treatment with Methotrexate a drug commonly prescribed for autoimmune disorders in produced “Positive effects” against some prominent Schizophrenia symptoms.
I will end here, but still have more to share.
Earth Clinic Staff, is there no way of ever communicating with another member directly if both parties agree? Thank you, love your site. Joseph
Replied By Gary (Georgia) on 06/27/2021
Has your son been tested for autoimmune diseases?For the anxiety, you might want to try red kratom. For more on kratom, go here: kratom.org
Replied By Joseph (Stockton, CA) on 06/24/2021
Sarcosine improves symptoms of schizophrenia, increases memory & develops the capacity to learn. My notes state 1-2G, however, I wrote only 1G for 3-5 weeks, then slowly add 1/4G.
Betaine crosses BBB, in treatment with mice it reduces behavioral symptoms of schizophrenia. No human trials yet, however eventually I will try.
Psilocybin, a single dose offered Rapid improvement in the levels of Anxiety, Depression. Psilocybin, a compound found in psychedelic mushrooms can affect mood & perception to “Regulate” arousal & panic responses. A single dose of one drug can ease anxiety& depression for five (5) years. Hard to read my own handwriting, however, I think you will get what I mean.
Ketamine, FDA approved for PTSD, Depression, Anxiety. 1 infusion lasts 3.5 months.
Skullcap for insomnia. L-Glutamine you have.
Yamuna Jujube, may keep Dr. away when you eat 3 daily. Calms brain, Anxiety. Jujube sounds very interesting, derived from the old jujube candies.
Schizophrenia treatment BXCL 501- reduces agitation in schizophrenia & Bipolar disorder. Dose 120 mg. A sublingual medication. Joseph
Replied By Joseph (Stockton, CA) on 06/25/2021
Remember before taking a new product you must thoroughly Google if any interaction(s) with anything he's taking now. Thank you, Joseph
Replied By John Claydon (UK) on 06/25/2021
High dose vitamin B3 has proved v useful in Schizophrenia or if that does not work, NADH can work. There are plenty of good CBD oils available. My company has just started marketing a v potent one I can send you free as we do not supply out of UK.
Replied By Gail M. (Pottstown, Pa.) on 06/26/2021
Replied By Joseph (Stockton, CA) on 06/26/2021
Schizophrenia voices, using Orthomolecular medications for my son I have experimented with large doses of B3 Niacin (with the flush) 9,000mg divided dosages, coupled with 9,000mg of Vit C, coupled with other supplements and have never known of a reduction in his voices, therefore now I only give 2,000mg B3 in AM & PM.