From my blog
statistics I know that many people rely on their smartphone to figure out
autism. Most people look at diets and supplements; I can see that from what words people have put in their Google searches. This blog is about anything that actually works and very often that ends up being a pharmaceutical, which is the last thing most people want to hear.
Today we have a video post on YouTube. It is a power PowerPoint
presentation with narration; this seems to be the best way to view something on a smart phone.
You can skip
through it with volume off, or if you are interested in certain parts listen to
the narration.
It is not
supposed to be a masterpiece, more of an experiment, without any script/rehearsal/editing. There is a preamble since not everyone is a regular reader of the blog. It is really just another way to spread the word that severe autism is treatable, even if that does open Pandora's box.
You can either click the image at the start of this post, or the link below:-
You may need to scroll the video back to the start, if it re-starts in the middle.
I have added Clemastine and DMF in version 6 of my Polypill. Some items remain for completeness (they do work), but are no longer in use.
I have added Clemastine and DMF in version 6 of my Polypill. Some items remain for completeness (they do work), but are no longer in use.
For any techies among you, this is how people view this blog; quite a lot of a lot of
iPhones and android phones, not many iPads. I use Windows and a big screen.
Looking forward to watch your Youtube movie, though I'll probably prefer to do it on my screen at home than on the mobile anyway. :-)
ReplyDeleteI got my eyes on this article, which is more of something to debate than to learn from:
Comparative psychopharmacology of autism and psychotic-affective disorders suggests new targets for treatment
https://academic.oup.com/emph/article/2019/1/149/5554458
The author proposes a hypothesis that autism and schizophrenia are diametric opposites, and gives examples from a couple of pathways.
Having looked into both, I think he has some points - there is probably a lot of childhood schizophrenia diagnosed as autism because of the age of onset and similar symptoms. On the other hand, I think there are some issues in the article too.
Peter, maybe a higher level topic that can pull some interesting theories from you?
/Ling
Hi,
ReplyDeleteI am wondering how and when to give the Ketoforce. It tastes terrible. Do you mix it with something? Also, is the administration upon waking?
Thank you.
Nancy
Nancy, the producer suggests mixing it with an acidic drink, because it is alkaline and otherwise tastes like jet fuel.
DeleteI mix it with orange juice. In the same glass goes the C8 oil, the potassium supplement, agmatine powder, the micro dose of clonazepam and the effervescent NAC. Stir well, because the C8 will just separate out.
This is given before breakfast. You get more BHB produced when taking ketone supplements before eating.
Peter-
ReplyDeleteI just have to say...this is AMAZING!!! So informative and educational.
Thank you,
Ralph
Thank you, Peter!
ReplyDeleteIt is well studied, explained - lot to think about.
Hi Peter, excelent work once again !
ReplyDeleteDid you stay on the 5 mg dosage of Fumadryl per day or did you try also 2x 5 mg ? If so, did you notice even more benefit ?
Sorry, I did not come to posting about our experience with Azosemide as promised...We have tried it 2x30 mg daily only for about 7-8 days . The reason we stopped was a obvious worsening in many aspects - irritability, anxiety, interests shifting, learning motivation. All together it was quite similar what we saw many times when his allergy problems / histamine intoleration, mite allergy / were poor controled. Within 2 days after stopping Azosemide things got much better.
The diuresis effect was almost non existent so hypokaliemia as a reason was ruled out. I have found some sources where Furosemide, almost the same drug as Azosemide, should be acting as inhibitor
of DAO / diaminooxidase, histamin degradating enzyme / , so it could be a possible explanation. Interestingly, Agnieszka has made similar mast cells relating problems after trying Azosemide.
So the next I hope much more positive experience report will be about DMF 😉
Rene, I am still using just 5mg of DMF/(1/6 of a Fumaderm Initial tablet). Activating Nrf-2 with DMF causes an increase in Serotonin and so a mood uplift/mild euphoria follows. We had the same thing years ago when using broccoli sprout powder. DMF has anti-inflammatory effects that Sulforaphane does not. These anti-inflammatory effects are I think potentially very useful in a sub-set of of people with ASD. The research also suggest a potential double benefit for people with mitochondrial disease.
DeleteI have not yet increases the DMF dose, because there will be too much euphoria. You can be too happy.
Agnieszka uses a higher dose of DMF.
Wow, thanks, I am eager to see what it does in our case, the chances that it fits are pretty good.
ReplyDeleteAgnieszka, have you seen benefits too ???
Rene, in short the answer is - yes, the positive effect was apparent from the first few days of using low dose 5-7.5 mg.
DeleteThe details are more complex. My son is affected by neurodevelopmental disorder with severe migraines (CACNA1A mutation related), autism, dyspraxia and mast cell activation syndrome. I tried DMF to control inflammatory triggers for his complex migraines. This worked exceptionally well at the beginning, but failed long term. In the meantime there were clear cognitive, speech and attention improvements noticed by laypersons. So called social improvements are usually secondary in my son and this also happened.
I am not sure about the optimal dose as my target is not autism itself at the moment. Currently I use 30 mg twice which is still far from the dose used in pediatric MS.
Also, I've been using auricular tVNS in last weeks which seems to have incremental effect.
With regard to Azosemide, I don't think it increased mast cell activation issues in my son. I don't use it now and he has the same issues, even worse as usually at this time of the year. I found Tyler's comment about SAD light interesting in this context.
Peter and Rene, actually it was another parent who raised a concern about "loop diuretics increasing histamine" to me in the past. Do you know any studies pointing to furosemide/bumetanide/azosemide increasing DAO? I couldn't find any.
DeleteActually, some foods rich in potassium e.g. tomatoes are not in line with low histamine diet recommended for histamine intolerance. I wonder if this may have an effect in sensitive children.
Agnieszka, I have found Furosemide as DAO inhibitor on two sites but without references. Thats why I just speculate that it could be the reason of Azosemide related worsening in our case / n=1 /.
DeleteThe only study about drug related DAO inhibition I have found was this one:
https://www.researchgate.net/publication/270438791_Evaluation_of_the_inhibitory_effect_of_various_drugs_active_ingredients_on_the_activity_of_human_diamine_oxidase_in_vitro
Unfortunately, they have tested not so many drugs - in our case I can confirm their results with Verapamil and Clavulanic acid.
Thanks for sharing your experience with DMF, I will do the same, we are just starting with 5 mg dose.
Peter, I am an amateur researcher and I'd like to exchange on Pregnenolone. Where can I write you?
ReplyDeleteThe best place to write to me is here in the comments section. Then you will get other amateur researchers' input.
DeleteThere is also a contact form at the lower right of the page.
Thanks Peter good video.
ReplyDeleteI have been trying some of the therapies on the blog. Atorvastatin and bumetanide have been life changing.
I tried potassium bromide, and I think you underestimate some of the sedation and side effects of the drug, I tried it at 500mg a day, and life became very daydream like and reaction speed to verbal/visual cues slowed down considerably. At least I can't find if you mention those effects in your blog much.
The autism I am treating is definitely high functioning in terms of IQ (but below average school smarts like attention, working memory, reading, listening) but untreated it was low functioning socially, vocationally and low life quality.
The first treatments came from high dose sertraline and low dose seroquel. This mostly treated severe anxiety, as well as mild/moderate depression. But atorvastatin and bumetinide appear to be treating something closer to the root causes. I think we will be able to stop taking seroquel because of these drugs.
Pat, thanks for all the feedback.
DeleteHello Pat, if you are still active mind if I ask what doses of sertraline, bumetanide and atorvastatin you are using?
DeleteHi, are you wondering for high functioning autism? I have since tried Everything on the blog and more and actually found a stack that has given a lot of improvement. I think it is in a place where I am satisfied and not looking for new treatments. I am still on:
Delete10mg atorvastatin
300mg magnesium
1000mg agmatine
1000mg tryptophan
25mg sertraline (which I believe isn't necessary just I can't be bothered to stop it)
3mg of melatonin
75 ug of t4 (for mood stabilization, its also on the blog)
cjc + ipamoralen (which is not on the blog, maybe it is indirectly, I am not recommending it but it just is too helpful)
Hi, yes this is for high functioning autism with main problem being the social communication issues. I am trying the things mentioned in this blog as well, first with NAC and now bumetanide. Was thinking about adding an ssri (for anxiety)and atorvastatin eventually, but finding the correct ssri out of the many that exist might would be tedious. Have you found bumetanide ineffective in the long term?
DeleteI didn't find bumetanide helpful in my case, the peeing side effect is a challenge too. The stuff I listed is what I currently take and find very helpful. Try sertraline, sometimes the anti anxiety dose you can take up to 200mg but it is not a subtle effect at that dose so try the lowest effective amount which could be 25 or 50mg up to 200mg. Atorvastatin was very amazing in my case, its easier to get a hold of than bumetanide too. You could also try claritin, advil, agmatine, verapamil, folinic acid... I could see myself taking folinic acid but it wasn't game changing so I kept looking. Agmatine was game changing, verapamil I found helped some of the time and seemed game changing some of the times not all the time.
DeleteWe have been using BCAA and niagin successfully for a few months. Such a calming effect. November/December are always hard months for my son since we are moving into less daylight so no weekday biking and not yet really ski season.
ReplyDeleteI have noticed recently that the edginess is back and rages are a little closer together than they have been.
Is there a time when BCAAs are no longer going to be effective or possibly even going to make things worse?
Thanks
Nancy
Nancy, I think Tyler is best placed to comment.
DeleteHi Peter
ReplyDeleteIt’s indeed a great presentation. We are living in dark age in U.K and cannot see it changing at least in near future. Did you do any genetic/ biochemical investigations before embarking on pills.
Hi Fariha, I embarked upon pills having read the detail of the original small clinical trial of bumetanide in autism. That was my first research paper and my first therapy. I did not start with any genetic or other lab work.
DeleteIn about 35% of cases, today's whole exome sequencing (WES) does identify a genetic factor relevant to autism. WES is therefore worthwhile. Often physical features provide clues to a genetic variation and they are often present from birth, if someone is actually looking.
BCAA's used several times a day will competitively block the amino acids that create dopamine and noepinephrine (tyrosine, phenylalanine) in the brain as well as serotonin (tryptophan). There seems to be excess dopamine in the autistic brain and/or supersensitivity of dopamine receptors while serotonin levels in the brain are more a mixed bag concerning the research even though peripheral levels of serotonin seem to be elevated much of the time. If you want to raise serotonin with BCAA's supplement 5-HTP, though I stopped using 5-HTP as it seemed to build a tolerance with my son where it worked great and then you had a hard crash.
ReplyDeleteIt is possible your son is having serotonin issues which may be independent of BCAA's though they could make things worse in that regard and increase irritability.
To boost serotonin without SSRI's, you can use 5-HTP but for the issues you seem to be having, I would use a SAD light (10,000 lux) to entrain his circadian rhythms in the morning for at least half an hour. Depending on the functioning of your son this can work great or else it may be impractical. There is nothing complicated about it but just blast a really bright light at him at relatively close range and this will boost serotonin production in the morning when you don't get natural light from the sun. Many school districts start very early so you sometimes have kids getting to school when it is almost dark and they then sit in school and never get the sunlight they need, especially in the winter months.
Try the SAD light for 2 weeks to a month before trying something else, that is if you have not employed this intervention already.
Thanks, Tyler. He definitely does better with just 2X a day of the BCAAs. When I go to 3X, the stimming goes through the roof and edginess increases. We do use 5-HTP once at bed and once in the AM, though I have never understood when to give it.
ReplyDeleteI will get an SAD light.
Nancy
Hi Peter,
ReplyDeletethis is Patrick again, thank you again.
Let me start with like a brief overview. Basically all the treatments have been hugely helpful, hard to express the truth of that. in particular agmatine, butanamide, atorvastatin... The agmatine has caused a shortened sleep, like 30% of the time sleep only lasts like 4-5 hours and the required amount is more like 7.5h for a good day. It is definitely worth continuing still because it gives a lot of energy and focus, i find it incredibly powerful and only use 250 mg of it. Maybe I need to try even lower? Any ideas or more insight about agmatine and what it does exactly, and how to address the changes to my sleep. I dont think most information i can find about agmatine is that clear... Another random thing of note with my case is a fairly high resting heart rate, I think that it is part of the symptoms of the particular problems I experience, like if my heart rate is <75 there is a corelation to having a good day, whereas 80-95 bpm is much more likely to be a worse day, I think I read your son has a good / low resting heart rate (not sure, I think I read that somewhere). So maybe this hasn't come up for you. If you have any thoughts I would love to hear.
Thanks Peter
Patrick, the size of Agmatine dose you take is actually included in some supplements sold to promote sleep. So you have a paradoxical reaction. That should tell us something.
DeleteI would only take a supplement, Agmatine or anything else, if you are sure there is a net benefit and that any side effect is not problematic.
Try an even lower dose.
The autonomic nervous system (ANS) controls your heart rate and many other things. The ANS is one of those things known to be dysfunctional in some autism and is therefore a target for treatment, as in the article below:-
https://www.spectrumnews.org/opinion/viewpoint/how-the-autonomic-nervous-system-may-govern-anxiety-in-autism/