Nemechek protocol for autism (A good read for sure)

Discuss autism diets and biomedical treatments of autism.

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hedger
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Joined: Tue Jan 26, 2016 7:29 am

Re: Nemechek protocol for autism (A good read for sure)

Postby hedger » Mon Jun 26, 2017 6:29 am

Any further updates on this? How is it going for those who are following the protocol?

Marya
Posts: 178
Joined: Tue Feb 21, 2017 4:14 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Marya » Wed Jun 28, 2017 3:06 am

majadj wrote:
SIBO, Small Intestine Bacterial Overgrowth, occurs when colonic bacteria migrate too high into the wrong section of the intestines.
In SIBO in ASD, clostridium which normally grow in colon migrates in small intestine where it doeş`t belong.
The most of propionate in blood comes from absorption from small intestine.

According to Nemechek,
The bacterial familes that predominantly colonize the colon vs the small intestine are very diffeerent in many aspects. One is their capability of digesting different fibers.

I've spent too much time trying to find a study that is behind this statement.
Haven't found.

Off topic, I wonder - if bacteria from gut communicates with brain, as McFabe said, maybe that is the reason why all the supplements given to child as anti inflammatories, stopped working after couple of weeks.
With reduction of inflammatory substances (IL-6, TNF...), the communication between microbiome and brain is probably distracted, so, bacteria must increase its secretion to maintain environmental conditions that are required for its survival.
Then supplements stop working.
First you must heal the gut (in regressive autism, gut`s symptoms are so common) and then deal with inflammation, not the other way around.

I agree with you, I always suffer from loosing good results from some supplements.
But the question is how to heal the gut from bad bacteria? Since inulin is not that safe for every gut. Taking antibiotics would also harm the gut! Probiotics are not always the best option as well! I'm waiting for a good intervention for this puzzle!

majadj
Posts: 46
Joined: Wed Jun 11, 2014 4:09 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby majadj » Wed Jun 28, 2017 6:23 pm

My daughter answers the questions, plays with toys. She is present. Stemming a lot, but stops it when I start to speak to her.
It was never like this before - stemming and stereotypes were usually followed by poor awareness. It is nothing like that - she is connected, even so the stereotypes are more intense.
She learns easier.
Few times only she had a colic pain in her belly (she used to have it all the time). Lasted one day, and Simethicone helped. Sleeps better. She has regular bowel movements.
After tree weeks, the new tooth started to grow, and she regressed. Every time the same scenario - before the tooth changing, allergy attack, infection, or after stress - she use to regress obviously.
I`ve decided to give her Singulair in the small dose - 4mg (for babies). It will cure the allergic rhinitis, IBS and inflammation.
„...As one way to address concerns about vaccine-related regression in children with mitochondrial disorders, suppression of the inflammatory response with a leukotriene receptor antagonist, such as montelukast (Singulair) or zafirlukast (Accolate), as well as ibuprofen, can attenuate the anti-mitochondrial elements of the immune response...“
http://mitomedical.com/2013/04/16/evalu ... rd-kelley/

Sice then, she is stable. I will continue this protocol.

Using: 1 caps. of CLO, 2 caps. of Krill Oil, 1 caps. of Luteolin (BrainGain) - mix them all together, then 2 tsp of inulin and Singulair 4mg.

Marya
Posts: 178
Joined: Tue Feb 21, 2017 4:14 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Marya » Thu Jun 29, 2017 11:32 pm

majadj wrote:My daughter answers the questions, plays with toys. She is present. Stemming a lot, but stops it when I start to speak to her.
It was never like this before - stemming and stereotypes were usually followed by poor awareness. It is nothing like that - she is connected, even so the stereotypes are more intense.
She learns easier.
Few times only she had a colic pain in her belly (she used to have it all the time). Lasted one day, and Simethicone helped. Sleeps better. She has regular bowel movements.
After tree weeks, the new tooth started to grow, and she regressed. Every time the same scenario - before the tooth changing, allergy attack, infection, or after stress - she use to regress obviously.
I`ve decided to give her Singulair in the small dose - 4mg (for babies). It will cure the allergic rhinitis, IBS and inflammation.
„...As one way to address concerns about vaccine-related regression in children with mitochondrial disorders, suppression of the inflammatory response with a leukotriene receptor antagonist, such as montelukast (Singulair) or zafirlukast (Accolate), as well as ibuprofen, can attenuate the anti-mitochondrial elements of the immune response...“
http://mitomedical.com/2013/04/16/evalu ... rd-kelley/

Sice then, she is stable. I will continue this protocol.

Using: 1 caps. of CLO, 2 caps. of Krill Oil, 1 caps. of Luteolin (BrainGain) - mix them all together, then 2 tsp of inulin and Singulair 4mg.

How do you find inulin so far? And when have you started it? I have read some concerns about it which made me to hold it for a while since it may affect both bad and good bacteria.

majadj
Posts: 46
Joined: Wed Jun 11, 2014 4:09 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby majadj » Fri Jun 30, 2017 3:40 am

My child (12 years) has been on this Protocol since the end of April. Here is our experience...
viewtopic.php?f=4&t=30492

Marya, I`ve decided to believe in other studies
Agave Inulin Supplementation Affects the Fecal Microbiota
http://jn.nutrition.org/content/145/9/2025.full
Bifidogenic effect of a very-long-chain inulin
http://centaur.reading.ac.uk/17635/
Pediatric Applications of Inulin and Oligofructose
http://jn.nutrition.org/content/137/11/2585S.long

Inulin can be found in
https://www.iherb.com/pr/Now-Foods-Orga ... 227-g/1100

Marya
Posts: 178
Joined: Tue Feb 21, 2017 4:14 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Marya » Mon Jul 03, 2017 5:15 am

majadj, thank you so much for your reply. I wonder if you put your son on GF diet or any other diet during this?

majadj
Posts: 46
Joined: Wed Jun 11, 2014 4:09 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby majadj » Wed Jul 05, 2017 2:19 pm

No, Marya, I haven't put her on diet. It is not necessary by the protocol.
Because of the bacterial overgrowth in SIBO, there is the leaky gut problem, and LPS of bacterias and parts of the food are passing through the barrier. It is the reason for mastocyte to come and produce histamine and other proinflammatory substances. That is contributing to food intolerance.
Ones the dysbiosis is corrected, the intolerance will reduce. (I hope)
Probably, the diet should starved the bad bacterias. But, I am too old and too tired to conduct that.

Marya
Posts: 178
Joined: Tue Feb 21, 2017 4:14 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Marya » Fri Jul 07, 2017 7:00 am

majadj wrote:No, Marya, I haven't put her on diet. It is not necessary by the protocol.
Because of the bacterial overgrowth in SIBO, there is the leaky gut problem, and LPS of bacterias and parts of the food are passing through the barrier. It is the reason for mastocyte to come and produce histamine and other proinflammatory substances. That is contributing to food intolerance.
Ones the dysbiosis is corrected, the intolerance will reduce. (I hope)
Probably, the diet should starved the bad bacterias. But, I am too old and too tired to conduct that.

I see . That would be very good for us.
I haven't started with inulin yet but I'm taking fresh garlic clove with yogurt. I heard it is similar to inulin that it feeds good bacteria and kill the bad ones. The first day I had like clod symptoms and that happened too when I took Turmeric. It could be die off I'm ont sure but will continue until I get inulin.

Hedgertiger
Posts: 5
Joined: Mon Apr 25, 2016 3:07 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Hedgertiger » Mon Jul 24, 2017 5:57 am

I am thinking about starting this but my son's latest stool test shows high level of Citrobacter Freundii so I am worried about the Inulin feeding this. I know the article says that Nemechek doesn't agree that this will happen but parents on Facebook groups say their kids have not been able to push through the terrible reaction to inulin so suspect the bad bacteria is out of control.

Our test results recommend GSE as a natural Citrobacter killer or abx but I don't want to wipe out all his good bacteria.

Any thoughts/experience with this?

Magmor
Posts: 1
Joined: Fri Sep 08, 2017 5:44 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Magmor » Fri Sep 08, 2017 5:54 pm

Hi,

My Son is taking Kirkman's DPP-IV with Isogest ( Digestive Enzyme ) *2 with every meal.
Recently, I started him on Nemechek's protocol of;
- Inulin ( Fiber choice gummies) * 4 daily
- Omega 3 ( Nordic Naturals ). 600mg * 2 daily

Can my Son continue to take digestive enzymes while on Inulin and Omega 3?

Thanks

P.

majadj
Posts: 46
Joined: Wed Jun 11, 2014 4:09 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby majadj » Mon Sep 18, 2017 4:34 am

Sorry, I'm late.
It was a tough road to go.
Full of verbal stimming, sound sensibility at the beginning, even aggressive behavior.
But there was something else present: self awareness and ability to hear me, processed what she hears and answer - even in the middle of the stimming.
Everything clears up in six weeks.
She become better, learning easier, happier, trying to use new words. I wrote about that on topic of propionic acid...
Tried antibiotic Rifaximin - doesn t gave me anything new, so I am still using inulin (even it is not Nemecheks advice to use inulin after Rifaximin)
She is stable now. Progressing.
Trick is to nourish good bacterias in the small intestine which are producing butyric acid. That acidly environment does not allow bad bacteria to grow in small intestine and produce propionic acid.
Magmor, digestive enzymes are forbidden - don't know why - maybe because they can destroy good bacteria...
Hedgertiger, Nemechek claims that the very small amounth of inullin gets to the colon from small intestine. (I can t now find the study about that...).

Marya
Posts: 178
Joined: Tue Feb 21, 2017 4:14 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby Marya » Mon Sep 18, 2017 9:52 pm

majadj wrote:Sorry, I'm late.
It was a tough road to go.
Full of verbal stimming, sound sensibility at the beginning, even aggressive behavior.
But there was something else present: self awareness and ability to hear me, processed what she hears and answer - even in the middle of the stimming.
Everything clears up in six weeks.
She become better, learning easier, happier, trying to use new words. I wrote about that on topic of propionic acid...
Tried antibiotic Rifaximin - doesn t gave me anything new, so I am still using inulin (even it is not Nemecheks advice to use inulin after Rifaximin)
She is stable now. Progressing.
Trick is to nourish good bacterias in the small intestine which are producing butyric acid. That acidly environment does not allow bad bacteria to grow in small intestine and produce propionic acid.
Magmor, digestive enzymes are forbidden - don't know why - maybe because they can destroy good bacteria...
Hedgertiger, Nemechek claims that the very small amounth of inullin gets to the colon from small intestine. (I can t now find the study about that...).

Hi majadj, I'm so happy to hear this. Couldn't beleive that inulin does all of that! That's really awesome.. I'm taking it myself and feel better.. do you also give your son something else exept omega 3?
Good luck and looking forward to hear more improvments

majadj
Posts: 46
Joined: Wed Jun 11, 2014 4:09 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby majadj » Tue Sep 19, 2017 3:32 am

Thank you, Marya.
Yes, I am giving Luteolin (Brain Gain supplement, made by Dr Theoharides). At the beginning one capsule, now 2 caps (2x1), mixed with omegas.
It has the same effect on microglia inflammation like the omega-3.
My child is almost 13y, so, I think that omega is not enough. Maybe I am wrong.
In the evening, I add 4mg (dose for babies) of Singulair. She has chronic rhinosinusitis, and I've noticed that, besides that, the effect of protocol is more stable. It regulates the amount of inlammantoris that accumulate during the day.
I am thinking that maybe Carnitine is good think to consider, due to its effect on propionic acid. Just thinking.
From the book for adult patiens:
https://scontent.fbeg2-1.fna.fbcdn.net/ ... e=5A4D42C6

srinivasisb2007
Posts: 1
Joined: Sat Oct 14, 2017 5:00 am

Re: Nemechek protocol for autism (A good read for sure)

Postby srinivasisb2007 » Sat Oct 14, 2017 5:06 am

onetime wrote:Thanks for sharing majadj.

I am by no means an expert, but those 2 studies seem to contradict one another - with one study saying that introducing too many Short Chain Fatty Acids (SCFA) induce autistic behaviors (“Intraventricular administration of PPA and SCFAs in rats induces abnormal motor movements, repetitive interests, electrographic changes, cognitive deficits, perseveration, and impaired social interactions.”), and with the other saying that autistic kids to do not have enough SCFAs (“Children with autism had much lower levels of total short chain fatty acids (-27%, p = 0.00002), including lower levels of acetate, proprionate, and valerate”).

Regardless, I’ve certainly read enough studies and run enough tests on dd to firmly believe that we are dealing with gut issues in our specific case. I completely agree with Nemechek on this point.

However, the bacteria that we are dealing with in my dd (Klebsiella pneumoniae & oxytoca, Citrobacter freundii) are gram negative and produce Lipopolysaccharides (LPS) - which is a potent endotoxin. We are also dealing with Staphylococcus aureus which produces superanitigens (SAGs) and compounds the effect of the LPS. (“One of the more dangerous indirect effects of SAg infection concerns the ability of SAgs to augment the effects of endotoxins in the body. This is accomplished by reducing the threshold for endotoxicity. Schlievert demonstrated that, when administered conjunctively, the effects of SAg and endotoxin are magnified as much as 50,000 times.”) http://iai.asm.org/content/36/1/123.long

Some studies show that inulin feeds Klebsiella, E. coli and many Clostridium species.

The point is that randomly feeding your child inulin without knowing what bacteria you are dealing with is like playing Russian Roulette. It may help - it may make matters much worse. And it is disingenuous on Nemechek’s part to suggest otherwise.

Someone here on the forum linked to an article that seems to apply to our case much more so than the Nemechek protocol. http://www.microbialinfluence.com/

My advice is to find out what you are dealing first, and then treat appropriately. And be careful of any advice that suggests using a “catch all” treatment will help all autistic kids (such as the Nemechek protocol seems to do).


This is a very balanced & insightful take on the topic. I agree, establishing the bad bacteria should be the starting point. @onetime - Can you suggest any test (e.g, CDSA) that can provide a view on the bacterial mix & issues in the gut ? I know only about CDSA; so any other tests would be a great help, thanks!

Applesaucer
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Joined: Sun Oct 30, 2016 2:08 am

Re: Nemechek protocol for autism (A good read for sure)

Postby Applesaucer » Sun Oct 15, 2017 5:46 pm

The Nemechek protocol seems to be working for my 6yro ds. His gut issues hadn't cleared in years now; food sensitivities, tics, irritability, tantrums, some OCD had been on rise recently; inability to go to sleep; mushy stools. The changes we are seeing now, on starting the protocol are nothing short of incredible. There's no stimming, clear expressive speech & conversations, he's calm, patient, attentive, joyful, goes to sleep quickly, well formed brown stools for the first time ever. It’s early days and I'll see how he progresses.

Dr. Nemecheck’s hypothesis resonates with me - from whatever I've observed in my son and my family over the years of floundering with tests, supplements, doctors, and wading through numerous theories on what the problem is - the hypothesis about the translocation of gut micro-biome left me in awe, because I realized that the explanation was sitting right under my nose, corroborating a lot of observed phenomenon. We tend to anticipate complex solutions to complex problems. Of course, there is no one path to a solution ( its possible that all the other bio-med therapies are eventually doing the same thing in different ways - change the gut environment to relocate nosy neighbors, reduce propionic acid ( and other toxins) levels and switch off microglial inflammation etc). But the fact that its working (even if I take my case as a n-of-1 trial) lends credence to the simplicity of Nemechek’s solution, and that it’s amenable to empirical testing. I am hopeful that if the right funds and attention is given to the various tents of his solution, strong evidence will unfold, and the protocol will evolve to address the corner cases for relapse and regressions.
My wish and hope is that more suffering children find this solution, soon enough. His book is a starting point.
Thanks.

onetime
Posts: 3
Joined: Sat Jul 23, 2016 3:30 pm

Re: Nemechek protocol for autism (A good read for sure)

Postby onetime » Wed Oct 18, 2017 11:42 am

srinivasisb2007 wrote:
onetime wrote:Thanks for sharing majadj.

I am by no means an expert, but those 2 studies seem to contradict one another - with one study saying that introducing too many Short Chain Fatty Acids (SCFA) induce autistic behaviors (“Intraventricular administration of PPA and SCFAs in rats induces abnormal motor movements, repetitive interests, electrographic changes, cognitive deficits, perseveration, and impaired social interactions.”), and with the other saying that autistic kids to do not have enough SCFAs (“Children with autism had much lower levels of total short chain fatty acids (-27%, p = 0.00002), including lower levels of acetate, proprionate, and valerate”).

Regardless, I’ve certainly read enough studies and run enough tests on dd to firmly believe that we are dealing with gut issues in our specific case. I completely agree with Nemechek on this point.

However, the bacteria that we are dealing with in my dd (Klebsiella pneumoniae & oxytoca, Citrobacter freundii) are gram negative and produce Lipopolysaccharides (LPS) - which is a potent endotoxin. We are also dealing with Staphylococcus aureus which produces superanitigens (SAGs) and compounds the effect of the LPS. (“One of the more dangerous indirect effects of SAg infection concerns the ability of SAgs to augment the effects of endotoxins in the body. This is accomplished by reducing the threshold for endotoxicity. Schlievert demonstrated that, when administered conjunctively, the effects of SAg and endotoxin are magnified as much as 50,000 times.”) http://iai.asm.org/content/36/1/123.long

Some studies show that inulin feeds Klebsiella, E. coli and many Clostridium species.

The point is that randomly feeding your child inulin without knowing what bacteria you are dealing with is like playing Russian Roulette. It may help - it may make matters much worse. And it is disingenuous on Nemechek’s part to suggest otherwise.

Someone here on the forum linked to an article that seems to apply to our case much more so than the Nemechek protocol. http://www.microbialinfluence.com/

My advice is to find out what you are dealing first, and then treat appropriately. And be careful of any advice that suggests using a “catch all” treatment will help all autistic kids (such as the Nemechek protocol seems to do).


This is a very balanced & insightful take on the topic. I agree, establishing the bad bacteria should be the starting point. @onetime - Can you suggest any test (e.g, CDSA) that can provide a view on the bacterial mix & issues in the gut ? I know only about CDSA; so any other tests would be a great help, thanks!



Hi @srinivasisb2007 - We order our stool tests from Doctor's Data. Our Dr provides us with the kit to send in - I'm not sure if you can order the kit direct. I would think so though.

Nikkie111
Posts: 338
Joined: Thu Sep 24, 2015 6:26 am

Re: Nemechek protocol for autism (A good read for sure)

Postby Nikkie111 » Fri Oct 20, 2017 6:22 am

onetime wrote:Thanks for sharing majadj.

I am by no means an expert, but those 2 studies seem to contradict one another - with one study saying that introducing too many Short Chain Fatty Acids (SCFA) induce autistic behaviors (“Intraventricular administration of PPA and SCFAs in rats induces abnormal motor movements, repetitive interests, electrographic changes, cognitive deficits, perseveration, and impaired social interactions.”), and with the other saying that autistic kids to do not have enough SCFAs (“Children with autism had much lower levels of total short chain fatty acids (-27%, p = 0.00002), including lower levels of acetate, proprionate, and valerate”).

Regardless, I’ve certainly read enough studies and run enough tests on dd to firmly believe that we are dealing with gut issues in our specific case. I completely agree with Nemechek on this point.

However, the bacteria that we are dealing with in my dd (Klebsiella pneumoniae & oxytoca, Citrobacter freundii) are gram negative and produce Lipopolysaccharides (LPS) - which is a potent endotoxin. We are also dealing with Staphylococcus aureus which produces superanitigens (SAGs) and compounds the effect of the LPS. (“One of the more dangerous indirect effects of SAg infection concerns the ability of SAgs to augment the effects of endotoxins in the body. This is accomplished by reducing the threshold for endotoxicity. Schlievert demonstrated that, when administered conjunctively, the effects of SAg and endotoxin are magnified as much as 50,000 times.”) http://iai.asm.org/content/36/1/123.long

Some studies show that inulin feeds Klebsiella, E. coli and many Clostridium species.

The point is that randomly feeding your child inulin without knowing what bacteria you are dealing with is like playing Russian Roulette. It may help - it may make matters much worse. And it is disingenuous on Nemechek’s part to suggest otherwise.

Someone here on the forum linked to an article that seems to apply to our case much more so than the Nemechek protocol. http://www.microbialinfluence.com/

My advice is to find out what you are dealing first, and then treat appropriately. And be careful of any advice that suggests using a “catch all” treatment will help all autistic kids (such as the Nemechek protocol seems to do).

Very good post, fully agree!

Aspie1983
Posts: 20
Joined: Mon Oct 16, 2017 8:56 am

Re: Nemechek protocol for autism (A good read for sure)

Postby Aspie1983 » Fri Oct 20, 2017 2:56 pm

I have made a post about propionic acid on epiphany a few days ago:

Autism: Metabolism, Mitochondria, and the Microbiome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3865378/

Propionic acid in the cerebrospinalfluid causes autism like behaviours in normal animals, but apparantly not when in their guts.
this study also speaks about propionic acid normally gets oxidized in mitochondria, and we all know about the mito impairment in autism.
Seems propionic acid is 'leaking' into cerebrospinal fluid in autism, and blocking this or somehow 'repairing' our mitochondria to oxidize propionic acid just like normal people do might actually fix the problem?

After 30minutes the autism like behaviour of these animals fully reversed and they became normal again.
Highly suggest everyone to read the entire article.

Theres been some talk about it here aswell:
https://epiphanyasd.blogspot.nl/2017/10 ... e-and.html

dijasn
Posts: 1
Joined: Tue Oct 31, 2017 9:31 am

Re: Nemechek protocol for autism (A good read for sure)

Postby dijasn » Tue Oct 31, 2017 9:41 am

Hi
I need some advice about this. I have been reading about Dr Nemecheck and about biomedical treatments. I would like to try Nemecheck's protocol. It seems safer than chelation. I have one concern though. My son does not show any bowel issues, has regular bowel movements, no diarrhoea. Do you think children like him on the spectrum without visible gut issues might be dealing with bacteria causing propionic acid as well?
Thanks for your reply.


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