Anne Dachel Interviews Marcia Hinds on Autism Recovery
By Anne Dachel
I recently got to know a tremendous activist in the autism community, Marcia Hinds. She’s the author of the book, I Know You're in There: Winning Our War Against Autism, published in January, 2020.
Ryan’s mom just wants all kids to have what her son now that’s why all profits from the book go to autism treatments/research and Marcia never charges for helping families. Once it becomes common knowledge that autism is the result of a dysfunctional immune system and is TREATABLE more answers and research will come.
Preview Ryan’s recovery story on Amazon or Marcia’s website. Check out this 90 sec clip from the documentary Restoring Balance: Autism Recovery that shows Marcia’s son before and after interventions. (watch here)
I talked to Marcia on Skype so everyone can hear her story and know we should never give up on our kids. This is her account of successfully recovering her son Ryan from autism.
I asked Marcia about her son Ryan and how she became involved in autism advocacy
Marcia: “Hearing that your child has autism is kind of terrifying. I don’t want any other parent to feel as terrified as I did. Ryan, he was very serious. In the beginning all he wanted to do—he had this little portable radio, and he would take it to every outlet and plug it in and out, over and over and over again.
“And when he wasn’t doing that, he was turning off and on all the faucets.
“He couldn’t speak. When he entered kindergarten, he was in the third percentile for speech, and had no functional speech at all.
“I was told there was nothing I could do, he’d never get better, and you might as well hang it up.
“The person who diagnosed him said to me, ‘There’s no hope. There’s nothing you can do. This kid’s not going to be okay. Most of these kids end up in an institution or in jail.’ That’s how she finished us off when she told us about his autism.
“I couldn’t believe—because he was diagnosed when he was almost four—that she gave my son a life sentence at that moment. That is so wrong. It is so wrong.”
Marcia talked about how the medical community fails to address the biomedical issues in autism, and how she was left on her own to help recover her son
“I think that the medical profession still believes what they learned in medical school when they got Autism 101—that autism is a developmental disorder and there’s nothing you can do.
“It’s kind of interesting because my son only began to make significant progress after we abandoned the idea that this was a developmental or psychiatric disorder and started to treat his broken immune system.
“What’s wrong with our kids is that they have too many stressors on their immune systems, and it’s not just one thing that causes it, it’s multiple things. And that’s what makes it so hard to treat because you have to treat all the little things that our wrong with their bodies. Once you do that, that’s when they can start to learn what they couldn’t before.
“Let me give you an example: when my son was little he used to bite and squeeze his older sister—she was three years older than him—until she cried.
“And she’d say to me, ‘Mom, can I hit him?’—and I’d say to her, ‘Meg, when he’s better, you can hit him.’
“It’s still a big joke between them today because whenever he ticks her off, she hauls off and just slugs him. Then they both start laughing.
“No matter what I did, I could not teach this kid to not hit, or bite, or squeeze his older sister.
“You have to understand [that] my husband and I as undergraduates, before we had Ryan, we were both behavior therapists under Dr, Ivar Lovaas at UCLA. We knew how to do this, but we still couldn’t get him to not do it. It wasn’t until we started medical treatment… The medical term is a dysfunctional immune system. I call it a messed up immune system.
“Maybe if we started calling it that, the doctors would start doing the research and our kids would get the medical treatment they need and deserve.
Marcia talked about her road to recovery with her son
“Today Ryan works as an aerospace engineer. He has good friends, and he leads a typical life. After Ryan was first diagnosed, the experts said he would need to be institutionalized one day. That is so devastating to a parent.
“They just don’t get it. They really don’t get it. It took me some time to realize that the real truth about autism is that once you help them medically, that’s when they’re able to learn what they couldn’t before.
“Now if we’d just done the medical without the behavioral and the educational, Ryan wouldn’t be okay. If we had just done the ABA without the medical piece, Ryan wouldn’t be okay. It takes all of it together. The medical makes it so they can learn; the behavioral and educational catches them up everything they missed.
“A lot of parents have this feeling like, ‘Oh my God, if my kid could just talk, everything would be okay.’ That’s not true. You have to remember it takes a normal child three years to learn speech when they don’t have anything wrong with their body. So if you’re using speech to see if the medical’s working, that’s not a good indicator.
“Sometimes what our kids do is they pick up where they left off. For my son, he probably stopped developing about age two. Then we started the medical treatments…he was about five. And once he started to develop again, he started to develop as a two year old. Two year old behavior doesn’t look so good on a five year old. It looked like he was getting worse when he was actually getting better.
“Our kids are so hard to understand. In this book that I wrote called I Know You’re in There: Winning Our War Against Autism --it was a war. It took everything I had to keep going, and sometimes I’d wake up, and I had nothing left. I’d work with the kid all day long—back then we didn’t even have Internet—so there was nothing out there to help us.
“I would work with Ryan all day long and I’d stay up all night reading. My husband looked at me, and he’d say, ‘You can’t do this,’ and I’d say to him, ‘I have to. There’s nobody else who’s going to.’
“Sometimes parents wait for someone else to do this for you. No one is going to do this for you. Nobody wants your job.
“This is the hardest thing I have ever done, and it is so worth it, because today, Ryan is incredible.”
Marcia: “That anger kept me going when I had nothing else”
“I read a book called, Let Me Hear Your Voice, by Catherine Maurice. It was the only book way back then that had anything positive to say about autism. The first piece of help that I got was from Dr. Bernard Rimland. I called that Autism Research Institute, and he answered the phone himself. I had no idea who he was because I was very green.
“I should have been really impressed, but I wasn’t because I didn’t know who he was. He seemed like a nice old man who was trying to help me.
“He said to me, ‘Does Ryan do a lot of dairy?’ and I said, ‘Yeah.’ And he goes, ‘Why don’t you try taking dairy away for a week and then give him a glass of milk and see what happens.’
“I was the kind of mom who gave my kids Fun Fruits for breakfast. I wasn’t into nutrition at all. We had pizza all the time. If he had said to me, ‘You need to go on a nondairy diet,’ I would have said, ‘Okay,’ and not have done it. But the way he said it, because I was so desperate, and he was so kind, I tried it. I took him off dairy for a week, and the change in that kid was phenomenal. And after I did that, I never did give him that glass of milk because all of a sudden he was more tuned in, there were less noises, less stimming, he was just so much better.
“But that was only one piece of it. There were so many other things we had to do. This is not an easy fix. There is not magic bullet out there, and I know that’s what we’re looking for as parents. You’ve got to do all the little things together to make them better so they can learn.
“I want parents to realize [that] the best piece of advice I ever got was from the woman who wrote the book, Let Me Hear Your Voice, and that was Catherine Maurice. She told me, ‘You have to use what your kids love to teach them.’
“Basically we did a modified ABA program. Every lesson that I taught Ryan…contained something that he loved or mostly obsessed over. That meant every lesson had elevators, keys, locks, cars, computers, light switches.
“The way my husband would get Ryan out of the house without me is he would say, ‘Ryan, do you want to go to the hardware store and look at the plugs and the switches?’
“And they’d go to the hardware store, and then they’d plug all the switches together, and when no one was looking, they’d sneak out of the store.
“That’s what it took in order to connect and make Ryan join our world. I always say that you have to make them join up to your world and not change the world for them. To do that we used what Ryan loved.
“Sometimes we just wanted to scream because he talked about the same thing over and over and over again. He wanted friends, but he didn’t know how to do it. He’d go up to kids, and he’d poke ‘em and poke ‘em and poke ‘em. Eventually the social skills came, but that was the last thing to come and the hardest thing to teach.
“And it’s all in [my] book [I Know You’re in There]. The book is the roadmap to what we did to help Ryan. In there I talk about all the mistakes I made because I don’t want parents to waste any time and make the same stupid mistakes that I did. I tried a lot of crazy things. When you’re desperate, you’ll do anything to help your kid.
“I just hope that parents remember that and use what they love to teach them.
“The one mistake that I never made was to give up. I made a lot of mistakes, but I kept putting one foot in front of the other no matter how hard it got. When I got too tired to keep going, I would imagine that day in the psychiatrist office who first gave us that diagnosis, and I would get mad all over again. That anger kept me going when I had nothing else.
It was through the one-on-one work that things improved for Ryan
“Ryan got speech thirty minutes, twice a week. It wouldn’t have been enough if that’s all we had done. I was really lucky in that the speech teachers did ABA naturally. They were just good teachers. They used what my son loved to motivate him and to teacher him.
“I would borrow their noun cards that had pictures of different things…All those materials were so expensive and you use them for about a week.
“They would let me borrow them, and I would take out three pictures. I would have a picture of a house, and I would have a picture of a car, and I would have a picture of a pencil. I’d put them in front of me. I would say, ‘Car,’ and I’d make him say, car. I’d say ‘house,’ and I’d make him say, house, and I’d make him say, pencil.
“Then I’d say to him, ‘Ryan, close your eyes.’ …and I’d grab one of the cards and I’d say, ‘What’s missing?’ and he would have to tell me which card was missing. Then he got to be the teacher, and he’d do the same thing. And every time he got one right, he got a puzzle piece. Ryan loved puzzles, and when he had all the puzzle pieces, he got to put the puzzle together.
“That was the way I used what he loved to teach him.
“Sometimes with our kids it’s hard to figure out what motivates them, but there are things that motivate them. A lot of times it’s just they want everything to stay the same. The sameness motivates them.
“When we would work together, we’d go into the playroom, and we had a whiteboard. He would pick an activity and I would pick an activity. We’d write it all down on the whiteboard, so he knew what was coming when. And when we finished one, he’d come and erase it. So we used all those things to motivate him.
What’s really wrong with our kids
“I don’t think any of our kids have what we refer to as autism. I always call it, autoimmune encephalitis. The reason I know that is because when Ryan was about five years old, he went to Harbor General, UCLA, and he was given something called a NEUROspect.
“That’s a big, fancy test that measure blood flow to different areas of the brain. The interesting part of doing that test was, the doctor who read it, who had never met my son, wrote, autism, question mark. question mark, question mark.
“If this was really a developmental or psychiatric disorder, how would he know by the blood flow in my son’s brain that he had autism?
“The inflammation in his brain kept different areas from getting the blood flow that they needed.
“When Ryan was about seven, maybe two, three years later, we repeated that same test. What happened was, the blood flow to the different areas of his brain was much improved and so was my son.
“That is proof that this is not really autism, but it’s really his autoimmune encephalitis.”
Email [email protected] with your location for help finding the right doctor or her email that has the interventions that helped Ryan the most.
I contacted Marcia and she was very helpful with her information.
She explains how her son is still an on going project to maintain his good health.
Her son does take Serotonin reuptakes. Has worked with Mike Adams from the University of Arizona on fecal transplants for his own going yeast infections.
That said; My own son's problems looks like it is going to be a bad reaction to Keppra, a medicine he has been taking for seizure for 15 years. At least I hope so. We are weaning him off of it slow.. Apparently it can some times mess the glutamate system and cause obsessive compulsive problems.
Please ya all give him your prayers that this works and there will be no residual problems after we get off of it.
Neurologist - takes so much time to get into to see one, and then --- well
Posted by: Benedetta | April 03, 2020 at 11:17 AM
Francis Weibel Thank you so very much! I was wondering about such! I will get right on this. Make my own! I thought so.
Last night at 3 in the morning I woke up and it occurred to me that my son's seizure medicine is Keppra. They say to always seek medical help and watch out for those sinus infections. The reason, I am pretty sure is because it tampers down the immune system.
So at three in the morning, I google "Streptococcus and Keppra" over my phone because I stay with my parents at night and most days so that is all I have to get in touch with the internet. Keppra does lower all those Ig E, A, Gs.
Now we wait to see what the labs says. I sent both my men; and they better come back with the answer if this lab is even testing for strep in the blood.
My son is taking a magnesium Epsom bath -- for four hours at a time. During all of this Julie. I can't even sleep, not that I did all that much to begin with. LOL. Now I am calling my daughter at three in the morning and telling her to get up and go check because that is what a care giver does. Then I call my husband at five and tell him to get himself up and check, cause his wife that use to do all that is now back at her parents' house.
Posted by: Benedetta F Stilwell | March 30, 2020 at 10:07 AM
Grace, thanks. It could have been that.
Grace, I had to laugh when reading your response. You had obviously looked into this in far more detail than I could even begin to understand!! Still, I hope you look into the magnesium issue as well. After reading Dr Carolyn Dean's information, you would realise that when we get a regular blood test for magnesium levels, that test appears to be almost useless. It's a Red Blood Cell Magnesium test that gives a better indication and she argues that the levels accepted as 'normal' are far too low. Glad to know that you now think you know the possible answer to the problem, though. Good luck.
Posted by: Julie | March 29, 2020 at 08:44 PM
For those interested in making their own silica water, chemist Dennis Crouse has developed a recipe. Read more here:
https://aluminum-alzheimers-autism.blogspot.com/2015/09/recipe-to-make-your-own-silica-water.html
Posted by: Francis Weibel | March 29, 2020 at 01:05 PM
Julie;
Yeah, I too went through all of what Exley said; that you just could not add silica, as in sand to the water. I also don't think he meant silica dioxide SiO4 either which is a food based silica found in celery, quinoa, buckwheat, diatomaceous earth, and in some of the drops I did buy that was labeled silica concentrate which was silica dioxide ions suspended in water. Horse tail tea is probably silica dioxide too. Although Mike Adams the Health Ranger says that it is a good detoxifying of aluminum. Mike Adams is probably assuming that once silica dioxide is suspended in water that some will have attached to a hydroxy group. The hydroxy group is a OH; oxygen and hydrogen making it acidic, unstable, looking for another atom to attach to it like aluminum. It is an acid, that is in Fiji water.
Exley was talking about a hydroxy group -- OH attached to silica; making it an acid or orthosilicic acid. You can buy those drops however, off of Amazon.com. Amazon SMILE. LOL!
That said, spring water running though sand stone would/could pick up an OH with silica attached making it silica acid. Just like some silica could pick up an OH group in horse tail tea, so Mike Adams is not wrong on that one either.
I admit that Fiji water running through volcanic rock is picking up lots of OH groups, it says so on the bottle, and it is a very silky, smooth, smooth water if you look at it.
I have bought both silica dioxide and orhtosilicic acid in drops. I messed up. But if you get the orhthosilicic acid you are getting the right kind.
WHEW!
That said; I came back to the conclusion last night that my son's problem is adult on set Pandas. Unwanted ideas and thoughts running through his head, taking many showers a day. His neck hurts pretty bad. He had a strep infection back in January when all of this started. We have labs to get tomorrow, I sure hope that they see if strep is still in his blood stream. This takes me back to when we were young some 30 years ago. My husband's back of his legs hurt and it turned out to be strep in his blood, but no other symptoms. It surprised me back at that time. I should have paid more attention to his complaint of neck pains. earlier.
It is just you get one as healthy as you can, but as adults they might mess up with eating junk and that immune system is never going to be the same. All Marcia Hinds son has to do is run into Strep and lose it all?
Posted by: Benedetta | March 29, 2020 at 11:09 AM
Julie and Benedetta,
I went out and bought some vegetable silica pills, and then discovered that it's not at all the same kind of silica as the mineral stuff in the water. I suppose it wouldn't do you any harm, but would not have the beneficial results you were hoping for. Perhaps that was what you were remembering, Julie?
Posted by: Grace Green | March 29, 2020 at 10:16 AM
Benedetta, best wishes to you. Things sound pretty tough for you at the moment. I read a lot about magnesium deficiency and aluminium toxicity and myoclonic jerks, anxiety, depression, seizures amongst many other things seem to feature. Dr Carolyn Dean, who wrote 'The Magnesium Miracle' also has a lot on information online and of course, there is information on the problems associated with aluminium (as you know) as well as Chris Exley's suggestions on how to rid the body of aluminium. I could be remembering this incorrectly, but I thought that Chris Exley had some reason that he didn't recommend adding silica to water; that it had to be the water that had the silica naturally occurring in it such as in Volvic or the even higher silica content Fiji water. I wish I could remember exactly what he said but when I remember thinking, when I heard the information, I could not just go and buy silica. I hope things get better soon.
Posted by: Julie | March 28, 2020 at 09:10 PM
Tim Lundeen I give him a B complex vitamin every day? I will look into this book though, cause maybe I am missing a lot more?
Thank you Grace Green we will get to the dentist as soon as possible, and check it out.
Surprise! L carnitine is not working.
Since baths seems to calm him, my husband gave my son some of his anxiety meds. My husbands develops myoclonic jerks with out them. We will see if this will get us through the weekend.
He is begging me to make an appointment and have them induce a seizure. Good Gosh.
Well at least he is talking again.
Posted by: Benedetta | March 28, 2020 at 03:49 PM
Greg, when you said you had three 'heart attacks' did you mean coronary artery blockages or arrhythmias?
Julie
Posted by: Julie | March 28, 2020 at 09:32 AM
Benedetta,
Here's another suggestion for you to consider. Could it be your son's dental implants? I had root canal treatment topped by two crowns on the NHS 2 and a half years ago, and this was followed by the worst health problems I've ever had - the usual autism/ME only worse. As I had previously had ALL my amalgam fillings replaced very professionally, resulting in a marked improvement in my symptoms, I knew there must have been some mercury in the new crowns, probably reacting with some other metals. They are not supposed to put mercury in crowns, so this was a deliberate attack. I'm sorry if this sounds paranoid, but at this time, paranoid is realistic! Can you find a dentist you can trust for your son? Good luck, hope things improve.
Posted by: Grace Green | March 28, 2020 at 07:32 AM
@bennedeta
I'm sorry to hear about your son. You might try Lonsdale/Marrs' book, Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition. Expensive but well worth the money. They have a blog at https://www.hormonesmatter.com/thiamine-book-what-reviewers-say/ with a lot of helpful info.
Posted by: Tim Lundeen | March 27, 2020 at 02:27 PM
@Benedetta I am so sorry that you have made all those changes and your son still struggles. My heart goes out to you. I wish I had something else useful to offer. I pray one day that we will know more.
Posted by: goldenchameleon | March 27, 2020 at 01:48 PM
Aimee Doyle; I know what you mean. Mine might be able to have a job. I don't know. He was able to go to college and I have never felt so blessed on that one. But living independent? A girlfriend? A family of his own? Well he is 32.
Posted by: Benedetta | March 27, 2020 at 11:12 AM
Greg Hill:
My son does have two dental implants. He was born without the those two teeth and he actually paid for them himself when he was working.
Plus he has a tooth that they were wanting to cap but didn't because they thought it had been damaged by acid reflux and they wanted us to see to that first.
Posted by: Benedetta | March 27, 2020 at 11:08 AM
Thank you goldenchameleon; I reached for the folic acid and methyl B 12 the first thing. I have the P5P - that is the form of B 6 the body uses, plus all the B vitamins. It did not help.
The silica rich water; I live not far from a sand fed spring. It is our joy; to make that trip when we run low, very early on a Sunday morning, through the back roads, and thick forests to a place called Climax Spring Water. In addition I have silica drops on the kitchen counter for all of them to drop into their cups for that extra, like the Fiji water. I admit though that Fiji water is smooth. Some times I drop in a horst tail tea bag in with a ginger tea bag for them all to drink. .
Yet he has regressed and not improved. He is now not speaking much at all, staring off into space. I thought maybe seizures? Maybe his Keppra is too low, which our general practitioner tried to up a few years ago anyway. It is more than depression. He seems dazed and unfocused as well as obsessed with needing to be in contact with water all the time.
Marcia has raised her son up to be able to obtain a nice degree and a nice job, and he is doing well. Can he maintain it? Is he capable of knowing how to eat? Does he have the discipline to know what to eat? What supplements should he take? And on and on. Why am I now having a reverse here? Is her son cable of having a reverse?
My son has been able to work on and off. Poor paid jobs, but he did well while they lasted. He has three vocational type, two year degrees. But I am unsure he can do any of them in real life work? Right now he sure can't.
What in the heck is going on here?
But all I am going to get from the medical field ,and I knew I would is some Risperdal to make him gain a ton of weight, and not much else. Oh, and a test to see his Keppra levels which were low two years ago, but he was doing well on that dose.
Maybe the carnitine is our answer?
What went wrong?
Posted by: Benedetta | March 27, 2020 at 10:59 AM
I'd just like to add to the discussion the fact that the chronic inflammation that is ultimately at the root of the problem can be pretty much anywhere in the body. As an example, it was chronic inflammation that caused me to have three heart attacks, the last one nearly fatal. It turned out that the source of that inflammation was a "quiet" (no pain or other symptoms I could detect) infection in my jaw bone above an old root canal. On my very first visit to a holistic dentist, a couple of years after my third heart attack, he took x-rays, showed them to me on a computer screen and told me, "You'd better have that root canal removed and the infection in the bone above it cleaned out before it causes you to have a heart attack." None of my regular doctors, including either of my cardiologists, knew enough to ask me, "Greg, have you ever had a root canal?" And of course my old non-holistic dentist, who knew about all three of my heart attacks, never made the connection because of the ADA's insistence that "root canals don't cause heart disease," just like the AAP insists that "vaccines don't cause autism."
My point here is that I could have made all kinds of changes in my diet and undergone any number of other therapies, but until I had the root cause of the inflammation, which was far away from my heart, discovered and corrected, I never could have stopped having heart attacks (the last one over nine years ago now).
I'm certainly no expert on autism in particular, and I can well imagine that there are kinds of damage that can be done to the brain by relatively short periods of intense inflammation that can never be repaired even after the source of the inflammation has been removed. But in any event I would encourage everybody who suffers from any symptoms, including "autoimmune encephalitis," that are caused by inflammation to remember that all parts of the body are inter-connected the same way that my jaw bone is connected to my heart. The right place to look for root cause inflammation in any part of the body can be in the gut, in the mouth, or in just about any other part of the body. And there may be no easily-detectable symptoms where the root cause inflammation may be. Just keep looking until you find it, wherever it may be, and don't get overly focused on the particular organ or tissues where the symptoms of the inflammation happen to be most obvious.
Posted by: Greg Hill | March 27, 2020 at 03:04 AM
@goldenchameleon
I think it's more than "some kids" who don't respond. As an autism mom of over 2 decades, and a disability attorney, I've spent time with a lot of autism families, and I know a lot of children and adults with autism. I've also done extensive, and I mean EXTENSIVE reading on the topic of autism intervention and recovery. I think the rate of full recovery from autism is somewhere under 10% - I'd actually estimate around 7-8%. Intervention - even ideal multi-faceted intervention - does make a difference - but it's not necessarily the silver bullet. Some kids recover from a single intervention, such as ABA, or just the right diet/supplement combination. Now most kids will make some progress, and some will make a lot of progress, but full recovery? Some recover from a multi-faceted approach, but the bottom line is that most don't fully recover. And there seems to be a correlation between severity and likelihood of recovery.
We need better research into autistic regression, better research into effective treatment and therapy, better research into how to help adolescents and adults with autism.
Posted by: Aimee Doyle | March 26, 2020 at 09:28 PM
@Benedetta There has been a recent shift in the medical community to conceptualize depression as inflammation in the brain. To that end, an anti-inflammatory style diet (high in fruits, vegetables, nuts, seeds, herbs, spices, teas, etc) has been found in recent clinical trials to relieve symptoms of depression. I've found from working with clients over the years that the methylated forms of B12 and folate can be very helpful in supporting relief from symptoms of depression and anxiety. Seeking Health has excellent products to support healthy mood. Individuals with autism usually have some damage from vaccine-related heavy metal accumulation, which can contribute to depression and anxiety as well by increasing brain inflammation. Drinking a liter per day of silica-rich water (Fiji, Volvic, etc) will support the body in eliminating aluminum over time. This is definitely not medical advice and I encourage you to work with someone knowledgable in this arena.
@Aimee Doyle I was always intrigued and frustrated by that observation too - why did some kids respond so well to dietary and lifestyle interventions and others not?
Posted by: goldenchameleon | March 26, 2020 at 04:52 PM
Less complicated is aluminum is involved. Well of course.
vaccinepapers.org/wp-content/uploads/The-disruption-of-L-carnitine-metabolism-by-aluminum-toxicity-and-oxidative-stress-promotes-dyslipidemia-in-human-astrocytic-and-hepatic-cells.pdf
Posted by: Benedetta | March 26, 2020 at 01:10 PM
Jeanne; Thanks, Yeah it takes a while to get it back, especially when no one around here really deeply believes their lives depend on a clean diet. Except me, I know I cannot eat gluten, I take responsibility and I don't.
My son has been back on the diet for a month now, well maybe two. Even in l January he was eating candy , a bag of tootsie rolls, and was hit with a strep infection. It made me think adult on set Pandas.
I found a bunch of articles on why would there be a deficiency of L carnitine?
Genetics was the answer on a lot of things. All the way from missing enzymes to a leaking of carnitine through the urine (I think that is what one article meant)
Of course in came a study done on gut microbiome
I can't get it out of my mind that one microbiologist said in a meeting at the NIH, under "Gut Microbiome" That vaccines are like taking a sledgehammer to the microbiome.
We all here know about C diff and fecal transplants on this sight, there seems to be some types of well I am not really sure. Here is a quote from one of the articles I found.
"In two closely related bacterial strains from the Clostridium XIVa cluster of the Lachnospiraceae family, determined by 16S ribosomal DNA (rDNA) sequencing to be Clostridium clostridioforme and Clostridium symbiosum."
But both appear to produce a "mimic" not the real deal of carnitine. These are becoming biomarkers for those that might suffer heart disease. Plus white matter in the brain that uses a lot of carnitine, gets messed up.
The thought is that carnitine mimics such as 3M-4-TMAB and 4-TMAP may be produced by these Lachnospiraceae in an attempt to inhibit carnitine function or metabolism in competing bacteria
That might be the reason for a low carnitine?
He is not better, my son; but he has improved. My husband picked up the Risperdal this morning, and the pressure is intense to give in . We have no insurance, and still we only paid 8.30 for it. It is now in the house.
Oh here is a link to another study about some bad gut bacteria, mimicking a real nutrient we need.
It never ends though.
https://advances.sciencemag.org/content/6/11/eaax6328.full
Posted by: Benedetta | March 26, 2020 at 01:05 PM
Benedetta,
I am sorry to hear about your son's depression. Yes, I have also heard about L-carnitine as well as GABA, and B12 shots for depression. What I will say is most people who use natural neurotransmitters take way more than 4 days to have a significant effect on the body. I listened to a webinar series by Trudy Scott (Anxiety Nutrition Solutions) and she had a naturapath on who said that she would saturate some of her clients systems with B12 shots daily for 3 weeks. She indicated that most of her clients who did this had significant recovery from anxiety and depression. But, mostly what I would say to you is it is difficult for any biomedical treatments to take hold if 3 times a day you are re-exciting and re-inhibiting body chemistry by eating foods that your body cannot affectively process. My son with autism is not recovered, but he is also not the violent young man that I am sure he would be based on the behaviors we saw when he was not fully committed to a GF-CF diet. The last time we saw uncontrolled, long duration meltdowns was after he ate several pieces of regular pizza. So, please, consider your son's diet choices as the baseline to any treatments you try, no matter how hard it is!
God bless you in your efforts to help your son!
Posted by: Jeanne J | March 26, 2020 at 12:11 PM
http://med.stanford.edu/news/all-news/2018/07/study-links-depression-to-low-blood-levels-of-acetyl-l-carnitine.html
Posted by: Benedetta | March 26, 2020 at 10:30 AM
Yeah Bob Moffit same here. They just gave the devil more money to crush us underfoot.
I don't know if it ever lets up?
My son is 32 and right now has pretty back depression.
Not thinking right either.
I went to Safeminds to look over the diet and stuff. I know my son has had a ball doing what he wants, eating what he wants this past year. He went through a two year program for heating and air.
Into the candy machines, and the group of students and the teacher would have regular cookouts, complete with all the desserts and you name it. SafeMinds mentioned using L carnitine. That is something that we went through with a neurologist back in the 2001-2003, and then on to seizure medications.
There is a 2018 research study that says Carnitine may be the new treatment for depression.
So I am giving it four days for Carnitine to work. IF it does not the rest of the family is insisting that he take the Risperdal that the doctor prescribed.
Posted by: Benedetta | March 26, 2020 at 10:28 AM
I am happy that she was able to cure her son. I agree that recovery/cure requires a variety of treatment and therapy. I agree that most autism is likely the result of a dysfunctional immune system.
But I also know many parents (including myself) who have literally tried everything without similar results to what she has achieved. We've been in the autism trenches for 25+ years and we have done the educational interventions (ABA, Special Education, private tutoring), the therapeutic interventions (speech therapy, OT, sensory integration therapy, auditory integration therapy, vision therapy), the biomedical interventions (GFCF diet, nutritional supplements, secretin, etc), alternative medical options such as acupuncture, craniosacral, and homeopathy. Our most recent intervention was medical cannabis. And, when he was aggressive and self-injurious in adolescence, we tried medications. I read the book "Let Me Hear Your Voice" and "Son-Rise" and we always tried to use what he loved to teach him and expand his world.
Since the day of diagnosis, we have never given up and our son has made enormous progress. I am grateful for what he has accomplished. However, he will never live independently, and will require support for the remainder of his life. He will never go to college, have a girlfriend, raise a family or have a career. To say this is sad and frustrating- after all our love, energy, time, and money - is an understatement. We still don't understand why some of these interventions were little to no help.
I agree that the medical profession needs to get a grip on autism - causes, treatments, etc. However, I posted this because I think there's more to autism than just following her protocol. I know kids who have received far less intervention (than my son and hers) and recovered, and kids who have received even more intervention (HBOT, etc.) without making significant progress.
Posted by: Aimee Doyle | March 26, 2020 at 10:03 AM
Marcia is amazing! She and I have compared notes several times. Our boys are both recovered because we treated the mito and immune dysfunction triggered by vaccines. We did it in slightly different ways, but both methods targeted the immune system and resulted in huge gains and ultimately, the loss if autism symptoms.
Posted by: Laura | March 26, 2020 at 09:10 AM
"I think that the medical profession still believes what they learned in medical school when they got Autism 101—that autism is a developmental disorder and there’s nothing you can do."
I suspect things haven't changed much in what fledgling doctors are being taught this very day about autism ... it is a "development disorder and there's nothing you can do" .. but .. not to worry because it has ALWAYS BEEN IN OUR CHILDREN … WE JUST GOT BETTER AT DIAGNOSING IT.
Yesterday our illustrious politicians in Washington, D.C. allocated 2 TRILLION dollars to combat the Coronavirus ….. in response to our illustrious public health officials having declared coronavirus a PUBLIC HEALTH EMERGENCY.
Unbelievably, these very same POLITICIANS AND PUBLIC HEALTH OFFICIALS have ignored the far more significant EPIDEMIC OF AUTISM ... that has been RAGING throughout the WORLD for DECADES … even worse … they DENY it's very occurrence.
Every time I see Dr Faucci of the CDC spewing his "expert opinion" on how to deal effectively with coronavirus … I cannot help but question where in his extended career as THE leading public health official in the world has he EVER given even an acknowledgement of the AUTISM EPIDEMIC?????
I am sorry … I cannot trust the man or his bureaucracy any longer .. he has lost my TRUST and he will never regain it in my lifetime … having overseen the unhealthiest generation in our nation's history. Wonder if 2 TRILLION DOLLARS would be enough for Faucci to FINALLY order that long delayed vaccinated v unvaccinated study?????
Posted by: Bob Moffit | March 26, 2020 at 08:36 AM