tag:blogger.com,1999:blog-655962722302095847.post1791650376831118346..comments2024-03-27T20:20:54.505+01:00Comments on Epiphany: Averting Autism - Antenatal Antioxidants? But Male, Female or Both?Peter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger40125tag:blogger.com,1999:blog-655962722302095847.post-22608428304713245222020-11-30T03:53:51.028+01:002020-11-30T03:53:51.028+01:00I recently found this online store and I can't...I recently found this online store and I can't believe it's based in Mexico, they are shipping to Europe and Canada:<br />https://cuerpoymente.mx/Lisa https://www.blogger.com/profile/00797983091361495962noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-85564010556341456152020-11-30T03:42:27.537+01:002020-11-30T03:42:27.537+01:00Thank you for your response Peter, I didn't kn...Thank you for your response Peter, I didn't know that about Ketotifen, I trialed it but only for a few days and didn't give it a chance to act because I reintroduced Pentoxifylline at that time, but I will try it again, it seems a very good option given that he has had respiratory problems before.<br /><br />I read your most recent post about Leucovorin, it's very good news that side effects can be avoided, it was great you could talk with Dr. Ramaeker's and share the information. I can get it, but it seems the FRα autoantibodies test is not done here. Could it be safe to make trial the same as with other interventions? Lisa https://www.blogger.com/profile/00797983091361495962noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-78651851388298666282020-11-26T15:38:07.290+01:002020-11-26T15:38:07.290+01:00cats, I use taurine in a mix called Aminoplus Burn...cats, I use taurine in a mix called Aminoplus Burnout, its designed to fill your storages of evrrything the brain uses in stress. considering that I have an asd child, I am in long term stress. i have used it for years now and it is essential for my wellbeing. 2 years ago I discontinued it and felt really good still but a few months ago the stores I had became empty and I had to get back on it. everyone I have shown it to has tried it and literally everyone is a convert - people who don’t have long term stress use it in especially stressful weeks. taurine definitely has my voice. tpeshttps://www.blogger.com/profile/01788229993969295249noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-49802334871429129212020-11-26T12:58:01.308+01:002020-11-26T12:58:01.308+01:00Hi Peter!
I'm interested in using melatonin....Hi Peter! <br /><br />I'm interested in using melatonin. It was here that I read of using it as an antioxidant. We do have issues around serotonin in ME/CFS and fibromyalgia too. Some people don't respond well to it - I'd like to try. <br /><br />I did try NAC a while back, 600 mg only and I didn't feel it did much. After reading through your blog, I thought maybe needed to take more of it. I will be trying it again soon, and now that you mention the sulfophrane... I have started taking MSM too (I try small amounts and then titrate slowly with everything). Is there a limit to how much sulfur one can have in the body, I wonder?<br /><br />I did then move on to straight cysteine. It had immediate effects with just the first tiny dose. There was a very visible positive effect on the quality of my tissues. As I started titrating up, within a few weeks - I wasn't able to sleep at all and spent the days in a daze/lethargy. It may have exacerbated an imbalance already present, or fed the dysfunction as I started smelling ammonia soon thereafter exuding from my skin.<br /><br />Since I started taking methylfolate and taurine, my ammonia levels have come down (until the above hiccup). Is ammonia an issue in autism as well? I think its build up may be one of the things behind the lethargy in ME/CFS. There is a research group in Australia studying nitrogen products: https://www.omf.ngo/2020/10/12/nitrogen-metabolism-and-testing-nitrogen-hypothesis-in-me-cfs/<br /><br />I have found that my MCAS status calms down a lot with methylfolate and taurine as well. I recently started quercetin - I know it's used as an antioxidant, and for MCAS too. I'm interested on the effect it may have on regulating 1-carbon metabolism and transsulfuration per this paper https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4629001/<br /><br />Taurine is my lowest amino acid and metabolomic studies on ME/CFS find taurine to be low. Supplementing it brings a level of calmness I don't think I have ever experienced in my life before. If I go off it (I ran out of it once!), my neurotransmitter business gets thrown off balance. It also has allowed for my magnesium levels to go up in bloodwork - they are borderline low and years of different forms of supplementation had not worked. I started taking magnesium again and this time, it seems to be working. Taurine is an osmolyte as well. I did titrate up slowly, to avoid negative effects and let my biome adjust. <br /><br />"Taurine modulates neurotransmission by acting on several neuroreceptors such as GABA and glutamate and acetylcholine receptors." I know these are common issues with autism.<br />Have you or readers had experiences supplementing taurine, positive or negative I wonder?<br />These are some interesting papers on it:<br /><br />"Effect of taurine on chronic and acute liver injury: Focus on blood and brain ammonia"<br />https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5615919/<br /><br />"Taurine and its analogs in neurological disorders: Focus on therapeutic potential and molecular mechanisms"<br /> https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6536745/<br /><br />I think the first thing I used was palmitoylethanolamide, a bit before I started the methylfolate. I took it for four months and didn't feel the need to take it again somehow - I cannot explain it, cannot put my finger on it as to why that is. You mentioning microglia makes me wonder if I should, as it has an effect on them:<br />https://www.nature.com/articles/s41598-017-00342-1<br /><br />I read your blog on agmatine. <br />I don't respond well to the arginine in food items high in it. My citrulline levels are slightly raised (compared to everything else) - seems to be a common finding in metabolomic studies too. There is some disfunction in urea cycle, and I'm not sure how it would go with the agmatine. I decided to wait on that one for now. <br /><br />Thank you!<br />catshttps://www.blogger.com/profile/14819122998420450741noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-28748951633809794442020-11-26T09:36:10.630+01:002020-11-26T09:36:10.630+01:00cats, it is rather trial and error. You might wan...cats, it is rather trial and error. You might want to trial NAC and then trial a sulforaphane producing product (Avmacol, Prostaphane, Broccomax etc). You might find that taking both together is the most beneficial. You might find neither help. <br /><br />CFS features activated microglia, as does autism, so you could try a low dose of Clemastine (normally used as an antihistamine) like 1mg in the evening.<br /><br />Lethargy in some autism responds to Agmatine. This is easy to try if you live outside the EU. Try 750mg once a day and see is you have less fatigue. If this one helps, please do let us know. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-11282748752653753992020-11-26T08:54:45.350+01:002020-11-26T08:54:45.350+01:00zzz, reading what you write it looks to me that re...zzz, reading what you write it looks to me that regardless of asperger or not, you have emotional issues (as in biological, not talk-therapy type). i think it would be helpful to visit a maps or dan doctor who could do some basic autism related tests on you, metabolism function, immunology, OAT. for starters, you care that you don’t care. as it seems there is no outside pressure for you ti change, it is your own desire. find a maps or dan in your are and start there. Tatjanahttps://www.blogger.com/profile/00856934973958247860noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-21684098903552931582020-11-26T00:42:37.158+01:002020-11-26T00:42:37.158+01:00Hi Peter!
I was reading through older posts.
You w...Hi Peter!<br />I was reading through older posts.<br />You wrote about choosing anti-oxidants depending on the kind of oxidative stress experienced in the body. <br />How does one figure this out?<br /><br />(I have ME/CFS; there is a lot of overlap in dysfunction mechanisms with autism, I learn a lot reading your blog!)<br /><br />Thank you catshttps://www.blogger.com/profile/14819122998420450741noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-24523536493067556342020-11-25T23:15:36.054+01:002020-11-25T23:15:36.054+01:00ZZZ, the term Asperger's really was for people...ZZZ, the term Asperger's really was for people with no speech delay and with normal to high IQ, but with mild autism. You cannot have classic autism, since you write like a typical person.<br /><br />You could also try Agmatine, which is cheap and makes some Aspies feel better. You could also try the antioxidant NAC. The more extreme therapies are for more extreme autism, your issues sound like typical Aspie ones. Many Aspies have explored ideas to make them feel better / more social etc. Look what they are saying on Reddit and post questions there.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-64699315843145109202020-11-25T22:45:17.504+01:002020-11-25T22:45:17.504+01:00Thanks Ling
I will give it a tryThanks Ling<br /><br />I will give it a tryApinke https://www.blogger.com/profile/01178011618909568118noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-45302621064418040012020-11-25T22:07:07.555+01:002020-11-25T22:07:07.555+01:00Also are any of the aforementioned, TMS stimulatio...Also are any of the aforementioned, TMS stimulation, FMT, stemcell therapy, parasite/chelation therapy are of any possible benefit or I should not even bother trying?ZZZnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-4562518440463834002020-11-25T21:16:22.796+01:002020-11-25T21:16:22.796+01:00Also was wondering if any medication thats being r...Also was wondering if any medication thats being researched/not available on the market would be possible to get to improve symptoms, like suramin or something like that?ZZZnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-6041203953583926962020-11-25T21:13:05.736+01:002020-11-25T21:13:05.736+01:00Thank you for your response, one more thing i want...Thank you for your response, one more thing i wanted your thoughts about is, I feel like I'm on a lower scale of the aspergers spectrum and it feels like compared to other aspergers people I can't socialize at all/don't really participate in socialization except from watching livestreams like I said, it feels like my head is empty in conversations/dont care about any topics unless I try really hard, it doesn't come naturally at all. My parents say I act jkinda normal but I feel like I'm not even of average aspergers level of socialization, it feels like I just watch these livestreams or twitter feed with 0 thougths on any social matter/don't care about it, just to spend time doing something to not be absolutely empty minded, it feels like hell living not understanding the social world. Could this be a representation of classic autism or is it more likely aspergers type autism?ZZZnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-48655605274911385052020-11-25T10:05:46.573+01:002020-11-25T10:05:46.573+01:00ZZZ, I think the oxytocin from L.Reuteri DSM 17938...ZZZ, I think the oxytocin from L.Reuteri DSM 17938 (in Protectis and Gastrus products) is a really good idea.<br /><br />If you had the chance to use intranasal vasopressin, that would be well worth a try.<br /><br />https://clinicaltrials.gov/ct2/show/NCT01962870<br /><br />Low doses of Psilocybin are used by many Aspies. This is not legal, but makes perfect sense from a science point of view. These are not hallucinogenic doses. You probably can find out all about this on Reddit. It is all about Serotonin 5-HT2A receptors. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-82235999055691277612020-11-25T09:48:23.028+01:002020-11-25T09:48:23.028+01:00Lisa, did you try Ketotifen? This might help with...Lisa, did you try Ketotifen? This might help with the skin problems and the research shows that it can prevent asthma developing, when give to young children at risk. Skin problems are often followed by asthma developing. This was covered in an old post.<br /><br />If calcium folinate (Leucovorin) tablets are available in Mexico, you might want to consider this a means to increase speech. The next post has more information on this subject.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-87024240181972589612020-11-25T07:26:12.742+01:002020-11-25T07:26:12.742+01:00Hello Peter, I wanted to ask for your help on my c...Hello Peter, I wanted to ask for your help on my current self diagnosed autism.I have hard time making and holding conversations, spend all of my days behind the computer watching live streams/playing video games, but even watching these streams I understand the jokes that people make, but don't understand why people laugh, why people react the way they do, have a hard time understanding politics, overall social stuff and have no inclination to learn it, just want to stay behind the computer and do nothing just watch these streams, when I dont even socialize there, feel like a complete alien/socially underdeveloped human, just watching other people, I also stim to music by dancing, have something similar to hand flapping sometimes when I'm excited. My brother exhibits strong ADHD symptoms, very hard to focus in school, but very emotional/social guy, my father is engineer/businessman, who has temper/empathy issues, but is socializing on a normal neurotypical level. I was making myself L.Reuteri 6475 yogurt, which kinda helped me understand/react to social situations more normally ( I guess?), I laugh much more in social situations, react in tune with other people, but still I am very very socially behind. I wanted your advice/opinion on possible treatments/strategies, should I get genetic testing/officially diagnosed, or are there any possible medical conditions that could be ruled out that could cause these symptoms? I am thinking of doing FMT transplant in my country, also was wondering if any of bumenatide, transcranial magnetic stimulation, stem cell therapy, parasite treatment, chelation therapy could be of any help? Would very much appreciate your help/advice.ZZZnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-78777611898323777832020-11-24T21:38:36.936+01:002020-11-24T21:38:36.936+01:00Hello Peter I saw your presentation it was great! ...Hello Peter I saw your presentation it was great! My son has been on Bumetanide for almost 8 months now, he has had great advancements, he still struggles to have a conversation but he has been gaining more vocabulary, his teacher always asks him how is he, and he never responds, but this time he said ''I'm handsome'', he has been stimming a lot and walks on his tiptoes more often, I don't know if its a coincidence but exactly one year ago he started to walk like this and his stimming worsened, before Bumetanide. He still takes Verapamil, Cetrizine, Pentoxifylline and NAC. Only his skin condition is notorious, but no other symptom of allergy or illness is noticeable, though I still think that something is going on. He is more flexible when we go walking but he is inflexible in other ways, like if he's painting a triangle and I tell him that I'll draw him a square for him to paint it and he says ''No, it's not a square, this is a triangle'' I don't know if that's Abstract thinking that he struggles with.Lisa https://www.blogger.com/profile/00797983091361495962noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-49531488318171428492020-11-24T14:32:54.603+01:002020-11-24T14:32:54.603+01:00Apinke, we have used Clemastine 0.5mg twice daily ...Apinke, we have used Clemastine 0.5mg twice daily for 1½ year in a child around 20 kg, somewhat younger than yours. <br />It takes a few weeks to notice the change, it is subtle. Longer sentences, standing her ground better.<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-37644186860312934912020-11-24T11:37:11.276+01:002020-11-24T11:37:11.276+01:00Thanks Peter .I got it already from a pharmacy ,I ...Thanks Peter .I got it already from a pharmacy ,I will start tonight .<br /><br />Thanks for your help .Apinke https://www.blogger.com/profile/01178011618909568118noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-86731742649275795132020-11-24T10:33:10.085+01:002020-11-24T10:33:10.085+01:00AJ, I gave you the link that I originally gave the...AJ, I gave you the link that I originally gave the organizer before it went to the Whova app. I do not know how to export from Whova, they probably do not want you to do thisPeter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-36496609238056074322020-11-24T10:24:29.827+01:002020-11-24T10:24:29.827+01:00Ross, the Dutch researchers did a trial in people ...Ross, the Dutch researchers did a trial in people with mild autism. It had a large placebo effect in the control group. These researchers seem to want to use an EEG to predict who is a responder. They have the best intentions, but they are rather muddying the water.<br /><br />We know bumetanide works for many people with severe autism, and so as not to miss a responder, the best thing to do is to let all these kids try it.<br /><br />The Dutch are not part of the stage 3 trial. I expect by 2025 it will be approved in Europe.<br /><br />Folate receptor antibodies<br />==========================<br /><br />There seems to be just one lab doing this test. You have to take a blood sample, separate out the plasma and send to the US for the test.<br /><br />http://iliadneuro.com/<br /><br />You could ask a doctor in the UK to help you do this. He/she might think you are mad, but you might meet someone helpful.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-85774332141889727752020-11-24T10:10:27.566+01:002020-11-24T10:10:27.566+01:00Apinke, I would just try Clemastine. In the UK yo...Apinke, I would just try Clemastine. In the UK you can buy this OTC from a pharmacy, if it is not in stock, it is easy to buy online from a proper UK pharmacy, it costs about £11 for 60 1 mg tablets. The allergy dose for a 6 year old is 0.5mg morning and night. I suggest you try 0.5mg in the evening.<br /><br />Clemastine has two potentially helpful effects. The immune cells in the brain are called microglia, these cells are a bit hyperactive in people with autism which may mean they neglect their real job. These cells do the "synaptic pruning" which creates a well formed adult brain, just like pruning in your garden. <br /><br />The second benefit is improving myelination. Myelin is like electrical insulation. You need myelin so that the electic signals in your brain reach their intended destination.<br /><br />I think the benefit of clemastine will depend on the age of the person, because your brain goes through many steps until it matures in your mid 20s.<br /><br />In a 6 year old you might look for changes in cognition, but also improved gross/fine motor skills.<br /><br />In my son the change was quite subtle, he started to express his own opinions, rather than just following instructions. <br /><br />I think you should try the full pack of 60 pills, so 4 months, then decide if it is beneficial. Give it in the evening because it may cause sleepiness, because it is also an antihistamine. <br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-55399791666585645942020-11-24T05:25:10.708+01:002020-11-24T05:25:10.708+01:00Hello Peter, Friends, and Community,
I just wante...Hello Peter, Friends, and Community,<br /><br />I just wanted to share a webinar I watched a few weeks ago from several researchers here in Canada (we have a lot of really good ones here), and the link is:<br /><br />https://www.autismontario.com/civicrm/event/info?id=4323&reset=1<br /><br />I had to register to watch it, and from memory, I think I chose to say I was an interested party and not a parent as they asked way too many questions of parents. I'm hoping that it'll still play (it says it should for 90 days after the event and we're still in that period)<br /><br />The reason I wanted to share this with the community is not necessarily for main reason for the webinar (the new findings about certain base pair repeats being found within ASD genes in new and more complex patterns) but for the wonderful explanation of how genetic mutations and other factors can result in ASD. <br /><br />Ny Hoang, a genetic counsellor at Sick Kids Hospital gives the single best overview of how ASD can arise due to a combination of genetics and other factors that I've ever seen, and it's the key piece for me in this webinar. It's a very simplistic analogy (Balls of different sizes in a cup) but works really well.<br /><br />Dr. Steven Scherer, who I believe is considered one of the world's top ASD geneticists also provides some really interesting comments. <br /><br />On a side note, when we were looking to get our daughter's genetic test done initially, I had contacted Dr. Scherer directly and he was wonderfully kind. We decided not go with Sick Kids at the time because they needed blood and GeneDx could do a cheek swab, so we went with the cheek swab, but but how incredibly nice he was throughout that process to an ASD he didn't know is something I'll always remember - a true gentleman. <br /><br />I would highly recommend this video to all ASD parents, but ESPECIALLY for those who aren't sure or don't believe their child's ASD is contributed to by a genetic mutation. <br /><br />The reason is that Ny Hoang's cup and balls analogy beautifully demonstrates that the cause of ASD likely isn't necessarily a binary choice of 100% genetic or 100% environmental, but that for the majority of ASD kids, it's likely a combination of several factors in both categories. So even if a parent feels that the cause of their child's ASD id not genetic, genetics may still be (and I believe likely does) contribute in some way. <br /><br />Why do I bring this up? I've had recent conversations about genetic testing with ASD parents, and those who will recall know that I'm a big proponent of genetic testing. I used a specific test and it was successful for us, and I think my rationale for using that test still holds true. <br /><br />The test I used can be expensive (~$3,000 US) and may not turn anything up (which shouldn't exclude a genetic contributor, but to me means that the test wasn't designed to catch that specific item, and some of the items may currently be unknown to science), but if you do get a hit, that insight can be lifechanging, and easily makes the test worthwhile (in my opinion)<br /><br />I hope this is helpful!<br /><br />AJAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-72625029900506119902020-11-23T23:11:25.439+01:002020-11-23T23:11:25.439+01:00Hi Peter,
Thanks very much!
This is much easier...Hi Peter,<br /><br />Thanks very much! <br /><br />This is much easier than my trying to share the video via the Whova app <br /><br />I will definitely share the video with our developmental pediatrician. She is great, and even considered maybe offering us a script, but then conferred with a specialist (I believe a nephrologist) and then said no as she wasn't comfortable. <br /><br />I will send her the video, as I had previously shared the Ben-Ari papers and Agnieszka's write-up (which was really helpful). <br />I'll hopefully wear down our developmental pediatrician ;-)<br /><br />Peter, now that I know it's possible to share the videos from Synchrony this way, do you know if there is a version of Dr. Ben-Ari's presentation available? I'd like to share it with one of the researchers I'm working with, as I think the concept may be relevant to the researcher. I've drafted an e-mail to the researcher with a few of Dr. Ben-Ari's papers, but if I could add the video, that would be terrific. If you have it, and you can e-mail it to me if it can't be shared publicly (since I did attend Synchrony) <br /><br />Thanks Peter!<br /><br />AJ (deep in Canadian snow, dreaming of a tropical holiday after covid)<br /><br />P.S. Just wanted to share a very interesting answer Dr. Ben-Ari gave with the community. It was asked if increasing KCC2 activity would be the same as inhibiting NKCC1 activity, and Dr. Ben-Ari noted that it may not actually be the same, as KCC2 may be internalized by the cell rather sitting on the cell surface, and so increasing its activity may not help push Chloride out the cell since it would also need to brought up to the cell surface. So basically it's far easier to inhibit NKCC1 than it would be get KCC2 to both get to the cell surface and then increase its activity. Just wanted to get this out there if anyone was looking at KCC2 as I think it's quite an important insightAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-3473474357650405272020-11-23T21:11:32.565+01:002020-11-23T21:11:32.565+01:00Hi Peter,
Couple of questions,
1. What do you t...Hi Peter,<br /><br />Couple of questions, <br /><br />1. What do you think is going on with the Bumetanide stage 3 trials so many mixed results over the years, suddenly Bumetanide trials giving very poor results ( see link), no better than placebo they say. I understand different kids may not be responders but do you think this will kill off any chance of Bumetanide being licenced for autism, or is there more tests to go in stage 3?<br /><br />https://www.jaacap.org/article/S0890-8567(20)32074-8/fulltext?rss=yes<br /><br />2. Roger Kulp experience interests me, although I live in the UK, where would you recommend getting my son a test for cerebral folate deficiency here? (even privatly?) I can’t see my nhs doctor pursuing this, or is the UK a dead end for this kind of thing.<br />Rosshttps://www.blogger.com/profile/12273925707834048355noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-15912127048163063172020-11-23T20:45:28.362+01:002020-11-23T20:45:28.362+01:00Hi Peter
Please can I ask what dose you will a...Hi Peter <br /><br />Please can I ask what dose you will advise for clemastine, for how long should it be used for? Also how would one know if it’s working/helping .<br />What’s the difference between clemastine and oxatimide, what to look out for?<br /><br />I am planning to add it to my poly pill for my boy of 6 years weighing 23kg.<br /><br />Thanks Apinke https://www.blogger.com/profile/01178011618909568118noreply@blogger.com