tag:blogger.com,1999:blog-655962722302095847.post3488385630419137774..comments2024-03-29T10:24:53.156+01:00Comments on Epiphany: Monty in Mardin – on the Silk Road with AutismPeter Lloyd-Thomashttp://www.blogger.com/profile/10173383229834614994noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-655962722302095847.post-45377957728906515022020-02-28T10:52:27.894+01:002020-02-28T10:52:27.894+01:00Well done Monty and PeterWell done Monty and PeterLiluhttps://www.blogger.com/profile/04932668846972316022noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-66243882061689207932020-02-18T10:18:58.313+01:002020-02-18T10:18:58.313+01:00Nancy, I think carnitine and carnitine-like substa...Nancy, I think carnitine and carnitine-like substances such as Mildronate will only help of your son has mitochondrial disease and so his cells are starved of fuel/ATP.<br /><br />It looks like Maria Sharapova used it from 2006 to 2016. So guess it boosted output from her mitochondria.<br /><br />Is your son a sporty guy or a couch potato?Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-32922122076785371082020-02-17T15:55:10.464+01:002020-02-17T15:55:10.464+01:00As my 26 yr old is a double tap regression kid, I ...As my 26 yr old is a double tap regression kid, I am wondering if maybe trying carnitine or even mildronate for the brain fog would be an interesting trial. Peter, do you know what a dosing schedule for mildronate might look like? At 20 mg/kg, I would see my son taking about 1500 mg/day but wonder how to space it out.<br />NancyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-54022325995955719642020-02-13T10:27:47.560+01:002020-02-13T10:27:47.560+01:00Tpes, since doctors cannot even persuade many peop...Tpes, since doctors cannot even persuade many people to take their cholesterol-lowering drugs, I don't think a tiny minority of Aspies need to be worried someone is going to force-feed them "anti-autism pills". <br /><br />They are exhibiting/enjoying paranoia and delusions more fitting of a schizophrenia diagnosis. Fortunately 99% of the world does not care; if it is a disability you seek treatment, if it is a trivial difference you live with it. If it is just a difference, why obsess about it? I think your husband has the right idea.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-26669935406888107042020-02-12T11:44:15.749+01:002020-02-12T11:44:15.749+01:00My husband has delved deep into the topic of psylo...My husband has delved deep into the topic of psylobicin, dma and mdma (the topic, not the use of the substances :-)) and he seems to think they are quite promising regarding social connection. I found it interesting to see ties to the very same immune abnormalities found in autism. The described proinflammatory cytokines in the paper are the ones elevated in my daughter. I have recently realized that I am one of those late diagnosed Aspergers women and its made me quite upset, but had also lead to a clearer picture. Not interested in therapy right now because I find I can’t distinguish between the symptoms and my identity. One more reason why this needs to be dealth with in childhood, and a reason to have more understanding for the ‘lets not cure autism’ crew of HF adults who are scared someone will try and take away what they are. To be honest when listing personality traits after I realized what I have, I was left with only 1 that is not a coping mechanism: I like cats. Normal people around me console me that everybodies personality is essentially one big coping mechanism, but I don’t know...tpeshttps://www.blogger.com/profile/01788229993969295249noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-36856188342755668302020-02-12T10:10:48.347+01:002020-02-12T10:10:48.347+01:00At the moment, it is Aspies who experiment with su...At the moment, it is Aspies who experiment with such products. I hope they spread the word to the other Aspies, who just feel miserable and think that is how life has to be. <br /><br />Fifty years ago at UCLA they used them in severe autism.<br /><br />Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-3055944626507192152020-02-12T09:59:24.059+01:002020-02-12T09:59:24.059+01:00There are thousands of genes relevant to autism. Y...There are thousands of genes relevant to autism. You have to include all the risk genes for Schizophrenia, Bipolar, AD(H)D, even though you do not have that diagnosis.<br /><br />The site I use to check the relevance of genes and for ideas how to modulate them is:<br /><br />www.genecards.org<br /><br />Sometimes cheap genetic testing reveals all you need to know, like the reader with ADD who used 23 and me to identify 3 mutations (NRG1/ANK3/CACNA1C).<br /><br />Look them up at www.genecards.org.<br /><br />These are all autism/schizophrenia genes and there are clearly implied therapies. One is in my Polypill. It takes 1 minute per gene to check them (once you have some experience).<br /><br />Another reader sent me six pages of results from whole exome sequencing and none of the genes looked relevant.<br /><br />Autism is always genetic, meaning genes are miss-expressed. Sometimes it is simply a single big/critical error in the exome, that any lab can detect. It might be a microdeletion the lab missed. It might be errors in the 98% of DNA they do not check. It might be unhelpful inherited "tags" on the epigenome.<br /><br />Environmental factors that affect autism do so via affecting gene expression.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-59585223231372359642020-02-12T08:15:32.080+01:002020-02-12T08:15:32.080+01:00Hi Ling, she is honestly a really happy child. I t...Hi Ling, she is honestly a really happy child. I think the ‘depressed’ part is possibly true technically, as 1. asd people tend to have less serotonin in their brains and 2. this could lead to her anxiety symptoms. Our initial idea behind Prozac was because we realized that what helps most with her demand avoidance is excitement, and not in an immediate way, say she is excited about the task, but rather lets say she was on a rollercoaster yesterday. today demand avoidance would be lower. Also, Peter, really interesting article here: https://www.frontiersin.org/articles/10.3389/fimmu.2015.00358/full?fbclid=IwAR1XF0T-pryuQSeLy_mjCW_fPvUuOCH_YwS7uqqDKyRDevS61it6rdzKT70tpeshttps://www.blogger.com/profile/01788229993969295249noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-78256459548363342002020-02-11T21:55:49.269+01:002020-02-11T21:55:49.269+01:00For genes I would do a sequencing of all of them. ...For genes I would do a sequencing of all of them. Then I would look for the best autism panels out there (I think there are readers here that could mention one). For any hit, I would perhaps start with checking the gene at https://gene.sfari.org/. Then I would simply google the gene with words like "rescue" or "inhibit" to see if there already are possible therapies.<br /><br />The other rout is to give a detailed description of the condition and simply ask people for a hint on which area to search. I kind of get the impression your girl is depressed. 5-HT, Bacopa and Fisetin could be alternatives before heading to Prozac. If IVIG and tonsillectomy have favorable results, look at the NLRP3 inflammasome or use statin/exogenous ketones. <br />I hope any of these advice helps.<br /><br />/LingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-59963012913701402122020-02-11T16:36:29.734+01:002020-02-11T16:36:29.734+01:00I only meant the ‘genes which are connected to an ...I only meant the ‘genes which are connected to an existing therapy in autism’ sum up post, so people can test for those and not get caught up in the many many genetic tests, but I can imagine you getting at times overwhelmed when thinking of all the things someone needs to understand in order to understand, well, this blog. My knowledge is probably at 15% of yours and I get so sad when somebody asks me the ‘so what should people do’ question, because its hard to even think of a place to start. I came up with the idea of a ‘genes’ bulletin point post because I am currently looking to expand our Polypill which is Ibuprofen (teeth), Aerius (just useful on all levels), Neuroprotek (same) Propranolol (vocal tics), Abx and antifungal and antiviral (Pandas), Bumetanide, Potassium chloride, Magnesium, B6 and L-Lysine. She is supposed to start school in 8 months and if we don’t get rid of the demand avoidance and unimaginable selfesteem problems by then, it will simply be useless. So I was thinking along the lines of low dose Prozac, Verapamil, Atorvastatin... then i realized genetics would probably help decide. This is all additionally complicated by the fact that we are dealing with a 20kg body, only 7 years, so we have to be careful when adding and dosing, and this body is affected by Pandas and will have to do IVIG and tonsillectomy this next few weeks. tpeshttps://www.blogger.com/profile/01788229993969295249noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-11743507090097950922020-02-11T16:03:46.695+01:002020-02-11T16:03:46.695+01:00There will eventually be a book.
Everyone finds t...There will eventually be a book.<br /><br />Everyone finds the science overwhelming, because to treat autism you need to understand all of human biology, meaning you could then treat cancer, dementia and most other conditions. A sum up post would be a book. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-62998092304430094262020-02-11T15:43:29.147+01:002020-02-11T15:43:29.147+01:00Paul, the other thing you could later do is to try...Paul, the other thing you could later do is to try 2 other very similar drugs with slightly different effects and then use the most effective one. The other two drugs are Lovastatin and Simvastatin. <br /><br />For example in Fragile-X, Lovastatin is much better than Simvastatin. All three drugs are lipophylic statins plus their special other effects. Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-92179756900490531182020-02-11T09:58:08.902+01:002020-02-11T09:58:08.902+01:00Paul, there are multiple reasons Atorvastatin help...Paul, there are multiple reasons Atorvastatin helps some people with autism. It is broadly anti-inflammatory, but it has some other very specific effects. <br /><br />Depending on whether your son has an issue with the genes Atorvastatin modulates (PTEN, BCL2 etc) his optimal dose may be higher than that for my son. So, it is great you have found an effective therapy, now you need to personalize the dosage to his unique case. If you use a higher dose you may want to supplement him with Coenzyme Q10. The negative effect that statins cause in some people often relate to a reduction in Coenzyme Q10. Many people with high cholesterol take a statin plus Coenzyme Q10.<br /><br />You can measure CoQ10 via a blood test. Low CoQ10 causes muscle pains as a common symptom; this is why some older people stop taking their statin.<br /><br />I no longer supplement Coenzyme Q10, because there have never been any side effects. I also take Atorvastatin, with no side effects.<br /><br />I did try a higher dose of Atorvastatin in my son, a long time ago and it gave no additional benefit. But your son may be different and the beneficial effect may increase.Peter Lloyd-Thomashttps://www.blogger.com/profile/10173383229834614994noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-64594504796459412562020-02-11T09:57:35.677+01:002020-02-11T09:57:35.677+01:00Peter, I have been thinking about a ‘sum it up’ po...Peter, I have been thinking about a ‘sum it up’ post which could be really useful for readers: a list of genetic tests they would find useful i. the sense that there is a therapy attached to the results. Example: atorvastatin and the genes connected to it, Mtor etc. its quite a big sea with a lot of ability to drown and a raft would be welcome :-).tpeshttps://www.blogger.com/profile/01788229993969295249noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-29099078037294935002020-02-11T04:14:33.375+01:002020-02-11T04:14:33.375+01:00Hi Peter . So started my 7 year old asd child on 1...Hi Peter . So started my 7 year old asd child on 10mg of atorvastatin. The results are really promising . He has been talking more , more awareness in his surrounding . Lot more involved . My question is if increased the statin 20mg would I get even better response or does to the drug not work that way and a lower dose is. Better. Interested in your thoughts thanks PaulAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-44086032925015296962020-02-08T09:18:26.817+01:002020-02-08T09:18:26.817+01:00One other thing I think is very important for good...One other thing I think is very important for good sleep and that is for my son to get a good amount of exercise. At school it is likely your child just swings on a swing during recess rather than running around with other kids. What has worked for us is to go on hikes in the park (more practical in the summer). Winter of course is a challenge so you should demand in your child's IEP (if you are American) that your child get X amount of minutes per day getting serious physical fitness. In addition to that, the school demanded he be picked up by their bus at home and I instead demanded they pick him up at his former elementary school where his younger siblings go so that he gets a good half mile walk before and after school. On days we have to drive him because of not getting out the door on time to walk, he is more likely to have a bad day at school as well as chronic sleep problems. Exercise is very important, but of course also very challenging, especially if you have other children.<br /><br />It makes a huge difference if your child has gone on a 2-3 mile walk/hike.Tylernoreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-11716617471671839632020-02-07T13:28:35.224+01:002020-02-07T13:28:35.224+01:00Nice post about travelling,
Great to hear you and...Nice post about travelling, <br />Great to hear you and the family had a good time exploring this less touristy side of Turkey!<br />For us travelling has been also a necessity to be in touch with close family, at some point we had to take two 11 hours flights plus stop over to reach our final destination, luckily my son has learned over the years to adapt to all the rules of travelling, which has been a life savior for our family, even last summer when coming back home we had to spent one night in London, and our son was great at the 1 hour passport control line at Heathrow, he was more patient that a lot of people I saw on the line.....<br /><br />I have always like travelling, and there are so many places I would love to see, last summer when visiting my parents I rescued my lonely planet guide to Central Asia, that I bought to great difficulty in 1996 to "plan" my trip to Uzbekistan, a place I have always love to see.... I brought it back with me to remind me those dreams.... who knows maybe one day I will go with my asd son to Uzbekistan, but for that I am sure I will need to buy a more up to date travel guide....<br /><br />Thank you for your work Peter.<br /><br />Lolanilolahttps://www.blogger.com/profile/04061283597900471149noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-1841313291585503672020-02-06T22:29:12.227+01:002020-02-06T22:29:12.227+01:00Hey Peter!
Thanks for a great travel update about...Hey Peter!<br /><br />Thanks for a great travel update about Monty. I have put Mardin on my travel list. I also drink water and hold my nose when landing!<br /><br />This whole article provokes a lot emotions for me: Before my diagnosis (at 53)... travel was very important to me, and I just dismissed any discomforts as "travel fatigue, etc." ... I often drove great distances and loved it. When I drove by myself, I found it soothing and fun... listening to music, watching the scenery. But when I got to my destination(s), I was often exhausted being with family or just interacting with people (hotels/tours/meals)..... I never thought much about my "difficulties".... I just got on with the trip.<br />After marriage, I traveled quite a bit with my husband. It was he who noticed my "difficulties" --overly exhausted, irritable, unable to be spontaneous, me commenting a lot about missing my routine at home... He also began to recognize that if our trips lasted any longer than two weeks, then I was miserable (and made him and our daughter miserable). So he recommended all future trips be less than two weeks.... that's worked quite well.<br />After my autism diagnosis, I began to take greater control when traveling with family. I get tired more easily--so I just head to my room for a nap. I found that private time in the hotel away from family made me calmer/more relaxed. My family is great, and having the diagnosis makes it clear that Mom is not just "acting up"----I really do need the breaks, slower pacing ... and I am totally OK with my family doing things without me on trips. <br /><br />One of thing things I love to do (my family not so much) is to just ride the "Red Bus" tours to get a sense of whatever city we are visiting. I love architecture, and I get to see so much when I am just sitting and absorbing. I don't have to talk... I can just look and enjoy. And I don't get so tired... <br /><br />A couple of unrelated things:<br /><br />--I've been taking a supplement that combines Taurine and Potassium Bromide (just these two): https://life-enhancement.com/products/taurine-n-more-1<br />--I've taken it for about three months...<br /><br />I have finished a trial of Mutaflor (Escherichia coli Nissle 1917): I can't definitively say it helped my gut, but it did not cause problems. It is prohibitively expensive, so I am moving back to taking Miyarisan---it's much cheaper and I felt good on it.<br /><br />--I continue to take a combination of Verapamil + Amlodipine. This works very well for me as I couldn't take Verapamil by itself. So, I get the benefit(s) of taking Verapamil without the constipation side-effects.<br /><br />Thanks so much for writing this blog, Peter.<br /><br />JanSilverseashttps://www.blogger.com/profile/17143305429687501870noreply@blogger.comtag:blogger.com,1999:blog-655962722302095847.post-48099535092956325562020-02-06T21:01:21.583+01:002020-02-06T21:01:21.583+01:00Not sure if my previous attempt to post went throu...Not sure if my previous attempt to post went through. This is for Tyler.<br /> BCAAs and Niagen has been amazing for my son in reducing the frequency and intensity of rages and SIB.<br /> But I want to make sure I am doing all I can around what appears to be a seratonin/tryptophan issue (or at least one of them).<br /> My protocol is <br /> 2 Niagen + BCAAs/collagen upon waking and again between 4 and 5 PM.<br /> 5 HTP 100 mg at night and in the morning.<br /><br /> No apigenin --what would the dosing and timing be for that? My son is about 175#<br />Anything else I should add if i am trying to address this issue?<br />His sleep remains terrible. He goes to sleep immediately but continues to wake between 1 -3 AM and stay up, lately turning into raging.<br />He seems to be back to wired as if parts of his brain he can't turn off and then brain foggy at other times as if there are parts of his brain shut down. Wish there were other therapies out there beyond drugs. tVNS was utterly amazing for a short while then completely ineffective.<br /> Oh well--at least BCAAs have been just what we needed.<br /> Thanks in advance, Tyler.<br /> NancyAnonymousnoreply@blogger.com