tag:blogger.com,1999:blog-655962722302095847.post993767260305117562..comments2024-03-27T20:20:54.505+01:00Comments on Epiphany: Ketone Therapy in Autism (Summary of Parts 1-6)Peter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger87125tag:blogger.com,1999:blog-655962722302095847.post-21149843634509192002022-06-07T09:40:08.293+02:002022-06-07T09:40:08.293+02:00Nancy, there are many products called MCT (medium ...Nancy, there are many products called MCT (medium chained triglycerides) they contain C8, C10, C12 etc hopefully as indicated on the label. The effects are not exactly the same.<br />My conclusion was that it is C8 that you want and there are 100% C8 products like this one.<br /><br />https://www.iherb.com/pr/sports-research-organic-mct-c8-oil-unflavored-16-fl-oz-473-ml/84966<br /><br />When it comes to BHB, iHerb still sell the old version you refer to:<br /><br />https://www.iherb.com/pr/julian-bakery-instaketones-potassium-0-91-lbs-414-g/77539<br /><br />It looks like they are nearly out of stock. They never stocked the new version, which is potassium D-BHB. This product exists on the producer’s website, but they are now out of stock.<br /><br />If you want potassium D-BHB you could email the producer (Julian Bakery) and ask if they are going to get it back in stock. I think this is the ideal product.<br /><br />You could use sodium D BHB, or the old potassium BHB (which is 50% D and 50%L).<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-73180835272285523792022-06-07T04:18:55.902+02:002022-06-07T04:18:55.902+02:00At one point, I thought you were recommending this...At one point, I thought you were recommending this<br />https://www.iherb.com/pr/julian-bakery-instaketones-potassium-0-91-lbs-414-g/77539 but I can't tell if that is D-BHB.<br /><br /> On the julian bakery website, it appears that D-Max with sodium is the option rather than potassium. Should I be looking for one with potassium?<br />Thanks for your guidance.<br />NancyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-8874415727262767562022-06-07T04:09:53.110+02:002022-06-07T04:09:53.110+02:00Thanks Peter. I seem to recall reading here at one...Thanks Peter. I seem to recall reading here at one point that certain brands of C8 are preferred over others, leading to different responses. Do you have a recommendation?<br />NancyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-40370911904786719742022-06-06T20:24:39.531+02:002022-06-06T20:24:39.531+02:00Timur BHB supplements are commonly salts or ester...Timur BHB supplements are commonly salts or esters. BHB has to be attached to something. In the case of BHB salts it is sodium, potassium, calcium or magnesium.<br /><br />If you are supplementing potassium, you get the potassium from the BHB salt instead. This would be bumetanide users for example.<br /><br />Personally I would choose potassium and I would avoid calcium. Some products have a mixture. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-12223653942349731332022-06-06T16:34:32.357+02:002022-06-06T16:34:32.357+02:00I had same question, glad that Nancy asked and tha...I had same question, glad that Nancy asked and thanks for your reply. <br /><br />I have started C8 (two tablespoons a day) for my 6 years old (positive so far), but not BHB yet. thanks for sharing the link to BHB, it seems like one of those products has high calcium in, just wandered why. hence question i had is if increased sodium would necessitate additional supplementation of Potassium or Calcium? or is it not that big of a deal given sodium amount is not that high. Thanks.Timurnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-19830656033381907502022-06-06T13:22:02.912+02:002022-06-06T13:22:02.912+02:00Nancy I would suggest you use D-BHB. One place tha...Nancy I would suggest you use D-BHB. One place that sell it is in the link below where it is called D-max.<br /><br />https://julianbakery.com/product-category/supplements/ketones/<br /><br />This company suggests a dose containing 7g of D-BHB, which seems reasonable.<br /><br />You can add 20ml of C8 oil and this will also produce BHB over a longer time frame.<br /><br />The molecule BHB comes in “left handed” and “right handed” versions, so we have D-BHB, L-BHB and just a mixture of both. The only one you need is the D-BHB, so it is much better/cheaper to buy D-BHB rather than the original product that was BHB (mixture of L and D). <br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-82921860041657344432022-06-05T13:27:56.246+02:002022-06-05T13:27:56.246+02:00Hi Peter,
I would really like to try BHB + C8 with...Hi Peter,<br />I would really like to try BHB + C8 with my adult son (around 170 lbs). He is a great responder to BCAAs/NAC as recommended by Tyler in regards to the mood disorder which has taken precedence over speech and cognition unfortunately in the past 10 years.<br /> Any idea about dosing ?<br />NancyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-52879301274053097332020-12-02T03:38:10.952+01:002020-12-02T03:38:10.952+01:00"I truly wonder why adenosine agonists are no..."I truly wonder why adenosine agonists are not use in ASD and autism yet"<br /><br />I think it's because adenosine agonists can cause cardiovascular issues.<br /><br />https://en.wikipedia.org/wiki/Adenosine#Supraventricular_tachycardia<br /><br />https://en.wikipedia.org/wiki/Adenosine#Mechanism_of_action<br /><br />https://www.reddit.com/r/askscience/comments/3x84b2/what_are_the_psychoactive_effects_of_an_adenosine/cy2dwn2?utm_source=share&utm_medium=web2x&context=3lowestprimehttps://www.blogger.com/profile/09082221023686615468noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-48118771586682550052020-05-18T16:25:39.449+02:002020-05-18T16:25:39.449+02:00Hi Peter,
I tried the BHB(ketoforce x 5ml) + C8, ...Hi Peter, <br />I tried the BHB(ketoforce x 5ml) + C8, I noticed definite effects like increased speech, but it only lasts for like 3-4 hours then there is a crash. I am going to try tweaking it with smaller doses I seem to be sensitive to everything and need half your doses. Unsure if I will continue it. I think a method for giving this during the day would be to add it to some water and drink it slowly over the day. It is very mild tasting.Pat Thomashttps://www.blogger.com/profile/09368457376534989862noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-7640849331063431312020-01-12T23:17:53.682+01:002020-01-12T23:17:53.682+01:00Ouch! I hate reporting on failures.
My retrial of...Ouch! I hate reporting on failures.<br /><br />My retrial of C8, same bottle as above, this time without some of the other interventions that raise serotonin, had to be stopped a few days in because of gut pain.<br />We didn't see anything like this last time when my daughter was having the time of her life, now she even refused to eat on two days in a row until I got her to communicate what the problem was. When C8 was stopped, so was gut pain. <br />We didn't reach any state resembling mania or hyperactivity this time, maybe because we stopped so early, but possibly saw less need for sleep.<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-43905571567324496432020-01-12T14:09:43.166+01:002020-01-12T14:09:43.166+01:00C10 has multiple effects which would normally eith...C10 has multiple effects which would normally either not be noticed or would be beneficial. Quite often people experience GI problems from some brands of MCT oil and this may relate to impurities. <br /><br />You could have a negative reaction to C10 being a PPAR gamma agonist, but more likely perhaps is some impurity in the product.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-86227041681732201692020-01-12T02:05:32.887+01:002020-01-12T02:05:32.887+01:00Peter, is there a known reason why C10 has a bad e...Peter, is there a known reason why C10 has a bad effect in some?Katie Jolleyhttps://www.blogger.com/profile/02292823555311368366noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-41527340624102932102019-12-18T03:43:36.819+01:002019-12-18T03:43:36.819+01:00Ahh, I didn't realise SHANK3 up-regulated the ...Ahh, I didn't realise SHANK3 up-regulated the expression HDAC. Is it possible that a HDAC inhibitor could play a role in more types of autism, where epigenetic effects have been observed, despite not having a SHANK3 mutation? Are there other gene mutations which could result in a lowered expression of HDAC? I know the William Walsh was doing work to investigate methylation defects, which I'd imagine could result in impacts in gene expression. I'm afraid my knowledge on biochem and genetics is somewhat limited, although I'd certainly like to learn more.Adamhttps://www.blogger.com/profile/13685366728650876234noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-83098314051284042152019-12-17T09:33:15.227+01:002019-12-17T09:33:15.227+01:00Adam, in the Skank3 deficient model of autism, a s...Adam, in the Skank3 deficient model of autism, a single 3 day treatment of Romidepsin, an HDAC inhibitor reversed their “autism”/ social behavior deficits for 3 weeks.<br /><br />In Shank3-deficient mice, β-catenin migrates out of synapses, accumulates in the nucleus, and up-regulates the expression of HDAC2.<br /><br />Inhibiting excessive HDAC2 selectively increases the expression of Grin2a and various actin regulatory genes, which in turn restored excitatory synapse function.<br /><br />As with many things in autism, too much or too little HDAC will cause problems.<br /><br />HDAC regulates the expression of genes via an epigenetic process.<br /><br />The ketogenic diet and the ketone BHB have so many effects, it is very hard to know which one is providing the benefit in any one individual.<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-1825545583975565342019-12-16T11:44:06.850+01:002019-12-16T11:44:06.850+01:00Hi Peter, quick question as I'm confused by th...Hi Peter, quick question as I'm confused by this epigentic silencing of genes. I have aspergers and have noticed that a ketogenic diet does induce short term changes, which could possibly be due to an epigenetic effect on silenced genes. Many anecdotal reports are coming out about carnivore/keto diets as being effective dietary interventions. How does HDAC inhibition in the Shank 3 deficient mice model relate to epigenetics? Surely it's just epigenetic "silencing" or reduced expression of the Shank 3 gene (along with up to 200 other genes) which is the problem, not a mutation of the gene? if this is the case, many more than the 1% of autistics would see improvement based upon the HDAC inhibition upregulating the genes in question.. or am I missing something? ThanksAdamhttps://www.blogger.com/profile/13685366728650876234noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-4030544727171403262019-10-17T10:31:40.318+02:002019-10-17T10:31:40.318+02:00It's kinda funny, the Wikipedia description of...It's kinda funny, the Wikipedia description of mania does indeed look like a description of common ketone effects, with a few negative words sprinkled on top:<br /><br />"The symptoms of mania include heightened mood (either euphoric or irritable); flight of ideas and pressure of speech; and increased energy, decreased need for sleep, and hyperactivity." <br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-79769562998048860262019-09-07T10:33:07.724+02:002019-09-07T10:33:07.724+02:00Yes sorry, it is PDZD4.
Yes they did look for tha...Yes sorry, it is PDZD4.<br /><br />Yes they did look for that variation and found the same in my wife. That is why they wanted to test the grandparents (especially grandpa, because if he had it it would make it a benign mutation), but we couldn't get them to test, so they decided to go ahead and do biopsies on both kids instead.<br /><br />They were interested because they found 5 families with the same mutation around the world (I think 1 French, 1 Chinese, 2 Americans and us (Spain)).<br /><br />We are now waiting for them to tell us something about this (study that I linked in my second message).<br /><br />I will contact the first researcher who gave us the diagnosis.<br /><br />Thank you for your help Peter, much appreciated.<br />David<br />DRhttps://www.blogger.com/profile/04235676910326512034noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-67242395560071153062019-09-07T10:11:23.462+02:002019-09-07T10:11:23.462+02:00David, PDZ4 (your first comment) and PDZD4 are sli...David, PDZ4 (your first comment) and PDZD4 are slightly different.<br /><br />If it is PDZD4 then you have a precise diagnosis.<br /><br />You can look it up in an autism gene database.<br /><br />https://gene.sfari.org/database/human-gene/PDZD4 <br /><br />https://www.alliancegenome.org/gene/HGNC:21167<br />https://www.genecards.org/cgi-bin/carddisp.pl?gene=PDZD4<br /><br />Your gene is part of the PDZ family of proteins that includes other better studied autism genes/proteins.<br /><br />If you cannot find a researcher who looks as PDZD4 I would contact one that looks at one of the other PDZ genes. The most well documented PDZ proteins are PSD-95, GRIP, and HOMER.<br /><br />Whoever gave you the original diagnosis is the first person to go back to for more information. Did they also look for this genetic variation in both parents?<br /><br />Most autism genetic testing is done using samples from the child and both parents and looks at what is unusual but only present in the child.<br /><br />In the US the MAPS/DAN doctors seem to refer to Dr Boles when it is a question of genes.<br /><br />I would suggest finding a researcher who is interested in PDZD4 or just PDZ. You can do this by looking at the research that has been published and then just email the author(s).<br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-22945818211607189202019-09-06T18:14:22.262+02:002019-09-06T18:14:22.262+02:00Thanks for the update David, and good luck the upc...Thanks for the update David, and good luck the upcoming months!<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-72053211449938132362019-09-06T15:18:53.209+02:002019-09-06T15:18:53.209+02:00I found back the study in question:
https://clinic...I found back the study in question:<br />https://clinicalstudies.info.nih.gov/ProtocolDetails.aspx?A_1976-HG-0238.html<br /><br />I'm not sure in which way it could help us.<br /><br />Peter, the only thing I know as of now is the mutation in question, that occurred on the gene PDZD4 (and the protein affected): do you know who could help me understand it to find out what is their sub-type of autism?<br /><br />Thanks again<br />DavidDRhttps://www.blogger.com/profile/04235676910326512034noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-1405471836723759512019-09-06T14:55:13.948+02:002019-09-06T14:55:13.948+02:00David, I think the diuresis itself will cause anxi...David, I think the diuresis itself will cause anxiety in some people.<br /><br />PDZ domains make up proteins like Glutamate receptor-interacting protein (GRIP) and HOMER. Both of which are linked to autism.<br /><br />https://en.wikipedia.org/wiki/PDZ_domain <br /><br />Once you know which genes/proteins are affected you will know much more about the sub-type of autism by understanding what the gene does.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-83260981604147661622019-09-06T12:38:57.154+02:002019-09-06T12:38:57.154+02:00A little update on the bumetanide: in the end my k...A little update on the bumetanide: in the end my kids didn't make it into the study (they're on the "backup" list).<br />So I decided to take things into my own hands and do the bumetanide trial at home. We started a bit over a month ago, 1mg administered in the morning, a little bit of potassium supplement (bananas, tomatoes, and some supplement). Checked the potassium levels after 2 weeks, and all normal, will check again soon. So far we've seen some positives in both kids, nothing crazy, but for the little one we have noticed increased anxiety. I wanted to ask if someone have seen this with bumetanide? It might be unrelated. No matter what, we are planning to do at least 3 months.<br />On the gene mutation front (PDZ4 for both kids), we have been asked permission to do a biopsy on both kids (which we accepted) for a research in the US... I can't seem to find which study it is, I'll post it later when I find the paper. Thanks to all!<br />DavidDRhttps://www.blogger.com/profile/04235676910326512034noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-84539490964080567132019-06-19T09:08:38.999+02:002019-06-19T09:08:38.999+02:00mkate, different brands of MCT and different combi...mkate, different brands of MCT and different combinations of C8 and C10 seem to cause bad effects in some people. Even "pure C8" products vary and in the same person one gives a great result and the other GI problems. This is unfortunately due to poor quality control by supplement companies.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-25288155659390225372019-06-18T20:17:46.550+02:002019-06-18T20:17:46.550+02:00Hi mkate!
It's been a while since my trial of ...Hi mkate!<br />It's been a while since my trial of C8, so I don't remember all details, but I am sure I would have mentioned any odd gut behaviour if there was any. So no, I don't think so.<br />It was not "hyperactivity and irritability" but rather "hyperactivity and manic sillyness".<br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-42195047964783832222019-06-18T18:39:48.218+02:002019-06-18T18:39:48.218+02:00Just a quick question Ling, and it may have no rel...Just a quick question Ling, and it may have no relevance to your child but...is she having diarrhea or tummy troubles? Only asking because for us, MCT oil brought about a lot of negative digestion issues that were usually preceded by some hyperactivity and irritability (naturally). <br /><br />mkateAnonymousnoreply@blogger.com