Nemechek protocol

[Teaching3bears]

Does anyone have experience with this for either themselves or someone they know? I am particularly interested in hearing experiences of older kids and adults. I am reading the book and he seems to have had really good success with young adults. He seems to think it is just a matter of time and they can all have success. Is this true or is he a liar or just delusional?

He uses an antibiotic (rifaximin) for the adults instead of insulin. I would be scared to use this with my son as he lost lots skills with antibiotics but I'm sure he is laden with bad bacteria (and yeast). The rest of the protocol looks simple enough though my sons have taken Nordik Naturals fish oils in the past at high doses without improvement so ...

I have a 16 and 18 year old who are nonverbal with severe special needs and they definitely look like something is drugging them.

[Pen]

Someone awhile back posted on Learning Challenges area that they’d had positive results with Nemechek, iirc.

 

Have you ever looked into Barry Neal Kaufman / Raun Kaufman /   Samahria  Kaufman    approaches?

If internal flora are a problem I wonder in a “fecal transplant” from the healthy sibling could help? 

 

[Crimson Wife]

Unfortunately I don't think that it's only a matter of time. I do think that healing the gut can help many people with ASD but that'll only help if there are gut issues. It's not going to fix any genetic mutations that exist and as more and more patients with ASD are getting genetic testing, it's becoming clear that spontaneous "de novo" mutations cause a significant subset of cases. There was just a study published this week that raised the number of known genes that cause ASD from 50something to over 100.

Nemechek is worth a try if you haven't already done so, but he's delusional if he thinks it'll help EVERYONE who has ASD.

[geodob]

He is one of those people, who exploit people's hope for a cure.

[itsheresomewhere]

Most I know I honk he is a quack who pads his pockets exploiting people’s hopes.  I agree with this.  And the ages he claims to see the most benefit are often the ages growth happens. 

Edited January 27, 2020 by itsheresomewhere

[chiguirre]

We did the whole DAN thing back in the day and didn't see any change. In fact, Geezle started to talk when we added back in gluten and casein to see if they made a difference.

What I have had a little success with is L. Reuteri. GW has been taking it for 6 months and we have seen some improvement in his language. He's using more complex grammar and spontaneously forming new sentences using constructions he's learned.

I buy it on Amazon from Swanson:

https://smile.amazon.com/gp/product/B00MXYP0TM/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I don't think it could do any harm to give it a try, but I'm not a doctor so use your judgement.

[Teaching3bears]

On 1/26/2020 at 10:41 AM, Pen said:

Someone awhile back posted on Learning Challenges area that they’d had positive results with Nemechek, iirc.

Thanks!  I will look at this!

Have you ever looked into Barry Neal Kaufman / Raun Kaufman /   Samahria  Kaufman    approaches?

Yes, I looked into a great deal but my kids are so ill.  It's their bodies that need help.

If internal flora are a problem I wonder in a “fecal transplant” from the healthy sibling could help? 

Unfortunately, I don't think anyone in our family has a really healthy gut.

 

 

[Teaching3bears]

On 1/26/2020 at 12:29 PM, Crimson Wife said:

Unfortunately I don't think that it's only a matter of time. I do think that healing the gut can help many people with ASD but that'll only help if there are gut issues. It's not going to fix any genetic mutations that exist and as more and more patients with ASD are getting genetic testing, it's becoming clear that spontaneous "de novo" mutations cause a significant subset of cases. There was just a study published this week that raised the number of known genes that cause ASD from 50something to over 100.

Nemechek is worth a try if you haven't already done so, but he's delusional if he thinks it'll help EVERYONE who has ASD.

 

With my kids, it's definitely gut issues!

[Pen]

Maybe the relatively healthier people could improve with probiotics , fermented foods etc, then maybe be potential fecal transplant donors.  

 

Edited January 28, 2020 by Pen

[Teaching3bears]

15 hours ago, geodob said:

He is one of those people, who exploit people's hope for a cure.

How do you know? Have you tried it or know anybody who has?   I am looking into this because it looks easy and harmless. The whole idea of propionic acid/bacteria drugging kids makes sense to me but I want to know if he is really seeing results in most older kids/aults he is treating.

 I don't see that he is making money from it.

[Pen]

Even if nemechek rarely helps, is profiting off people’s desperation, maybe in your case it would be worth trying for a limited time (and not doing anything that would be dangerous). If your family were one of the rare successes that would be good.  

[Teaching3bears]

10 hours ago, itsheresomewhere said:

Most I know I honk he is a quack who pads his pockets exploiting people’s hopes.  I agree with this.  And the ages he claims to see the most benefit are often the ages growth happens. 

Is he really padding his pockets?  He is not selling anything.  People buy what he recommends through other sources.

I agree that the ages that he sees the most benefits are when growth happens.  But this is true for all treatments and therapies.

[Teaching3bears]

8 minutes ago, Pen said:

Maybe the relatively healthier people could improve with probiotics , fermented foods etc, then maybe be potential fecal transplant donors.  

 

From what I understand, the safest and most effective focal transplant treatments have been done with samples that are highly screened and highly purified/filtered.  It is not safe to do this at home on your own.  But the research is very promising and I am waiting.

[itsheresomewhere]

Did you ever call the geneticist you used a couple of years ago and ask they rerun the data again?  The strides being made lately is fascinating.  They have even found lately genes variations in autistic individuals that are great discovery.  Having the geneticist rerun the data against the new stuff could help you figure out the boys. 

[LarlaB]

I'm on this protocol right now for Autonomic Nervous System repair after my concussion and subsequent POTS. I strongly suggest finding the Nemechek Facebook groups.... you can read lots of stories, get input and ask questions. There is group for caregivers and also for patients- if that makes sense.   They are kind of militant about how they manage the groups, but there are 10K plus members. 

So it all builds off of the Inulin or Rifaximin first.....then adding oil and VNS.  I think some people give it a 2 week headstart- I don't remember what he recommended in the book, but it makes logical sense to me.  The oils cannot do their best work if the gut is simply overrun and hugely imbalanced.   That could be why you haven't seen much difference from just using fish oil.

I have been taking inulin, good quality COOC olive oil, nordic fish oil.  I tried the vagus nerve stimulator (VNS) but it was too much for me and provoked dizziness.  I couldn't feel it becuase the settings are so low, but in 3 minutes I was full on dizzy and nauseous. That is not a normal reaction and likely due to the complex crap going on for me- including some upper cervical spine issues, essentially whiplash neck muscles and also post concussion issues. From what I've gathered, the VNS is a crucial part.    I have a TENS unit and just got an ear clip piece....very low settings.  I may add it back at a later time. 

He did just come out with his own VNS clip that attaches to your phone- for like $800 (his brother runs the manufacturing company).  That really turned my stomach.  He also does link to re-selling the supplements  he recommends and is now working on his own olive oil.  All of that together hits me the wrong way.   He is definitely proprietary and trademarked to the limits.  And I did get his book and was not impressed - not a lot of science or studies or data to back up his claims. 

But I have heard enough about SIBO from various sources to absolutely believe his premise might have merit, and that is enough for me. 

[itsheresomewhere]

There was interesting discussion awhile ago talking about how much he charges in office for his own tests. Special tests that were not available other physicians could do and only he could interpret the “data”.  Along with the book and talk fees, he really is making money off of people.  Perhaps, his original idea was good but greed has taken over. 

Edited January 28, 2020 by itsheresomewhere

[Pen]

30 minutes ago, Teaching3bears said:

From what I understand, the safest and most effective focal transplant treatments have been done with samples that are highly screened and highly purified/filtered.  It is not safe to do this at home on your own.  But the research is very promising and I am waiting.

 

In some things I have read iirc the donor was a healthy family member even if done by medical personnel.  

[Teaching3bears]

13 hours ago, itsheresomewhere said:

Did you ever call the geneticist you used a couple of years ago and ask they rerun the data again?  The strides being made lately is fascinating.  They have even found lately genes variations in autistic individuals that are great discovery.  Having the geneticist rerun the data against the new stuff could help you figure out the boys. 

The geneticist said to come back every five years.  He said that it is not one gene they will find but 100 or more.  He said that when they do find genes it is rare they actually have a solution that can help the person.  My sons have already been tested for all the stuff where they have solutions.  

[itsheresomewhere]

Just now, Teaching3bears said:

The geneticist said to come back every five years.  He said that it is not one gene they will find but 100 or more.  He said that when they do find genes it is rare they actually have a solution that can help the person.  My sons have already been tested for all the stuff where they have solutions.  

With the strides that have been made this past year alone, I am surprised he said every 5 years.  Most want every year or two years.   If I were you, I would call every year and have him rerun the data. 

[Teaching3bears]

13 hours ago, LarlaB said:

I'm on this protocol right now for Autonomic Nervous System repair after my concussion and subsequent POTS. I strongly suggest finding the Nemechek Facebook groups.... you can read lots of stories, get input and ask questions. There is group for caregivers and also for patients- if that makes sense.   They are kind of militant about how they manage the groups, but there are 10K plus members. 

Thanks!

So it all builds off of the Inulin or Rifaximin first.....then adding oil and VNS.  I think some people give it a 2 week headstart- I don't remember what he recommended in the book, but it makes logical sense to me.  The oils cannot do their best work if the gut is simply overrun and hugely imbalanced.   That could be why you haven't seen much difference from just using fish oil.

Yes!!!

I have been taking inulin, good quality COOC olive oil, nordic fish oil.  I tried the vagus nerve stimulator (VNS) but it was too much for me and provoked dizziness.  I couldn't feel it becuase the settings are so low, but in 3 minutes I was full on dizzy and nauseous. That is not a normal reaction and likely due to the complex crap going on for me- including some upper cervical spine issues, essentially whiplash neck muscles and also post concussion issues. From what I've gathered, the VNS is a crucial part.    I have a TENS unit and just got an ear clip piece....very low settings.  I may add it back at a later time. 

He did just come out with his own VNS clip that attaches to your phone- for like $800 (his brother runs the manufacturing company).  That really turned my stomach.  He also does link to re-selling the supplements  he recommends and is now working on his own olive oil.  All of that together hits me the wrong way.   He is definitely proprietary and trademarked to the limits.  And I did get his book and was not impressed - not a lot of science or studies or data to back up his claims. 

But I have heard enough about SIBO from various sources to absolutely believe his premise might have merit, and that is enough for me. 

It is the add-on of the VNS stuff that set off red flags for me.  I have not heard enough good things about it and it did not seem related to the rest of his protocol.  I don't know if my kids would cooperate either.  What is involved on a physical basis?  

Oh ... he's selling his own supplements and olive oil now?  :(    

Did the inulin and oils help you significantly?

[Teaching3bears]

13 hours ago, itsheresomewhere said:

There was interesting discussion awhile ago talking about how much he charges in office for his own tests.

Was that on the special needs boards here or his faceboook page?

Special tests that were not available other physicians could do and only he could interpret the “data”.  Along with the book and talk fees, he really is making money off of people.  Perhaps, his original idea was good but greed has taken over. 

That's too bad.  I am wondering if I should do the inulin and oils on my own.  Though maybe they are too old for the inulin?

 

[Teaching3bears]

6 minutes ago, itsheresomewhere said:

With the strides that have been made this past year alone, I am surprised he said every 5 years.  Most want every year or two years.   If I were you, I would call every year and have him rerun the data. 

Thanks, I will contact him.

[itsheresomewhere]

It was private forum.  

[Pen]

Inulin is used by people of many ages as a good fiber source / prebiotic.   (Or foods with inulin like chicory, jicama... in various cultures.) 

some people don’t tolerate it well, but teens being  “too old” for it doesn’t make sense to me

Have you already tried protocols from others besides Nemechek related to GI and gut microbiome? 

[Teaching3bears]

7 hours ago, Pen said:

Inulin is used by people of many ages as a good fiber source / prebiotic.   (Or foods with inulin like chicory, jicama... in various cultures.) 

some people don’t tolerate it well, but teens being  “too old” for it doesn’t make sense to me

Have you already tried protocols from others besides Nemechek related to GI and gut microbiome? 

It's not that they are too old for inulin in general.  From what I understand, he uses an antibiotic with adults and older teens because the inulin protocol is not effective enough to clean their gut.

Oh yes!  We have tried a ton of gut treatments and continue to do them.  That is partly why I am asking about the Nemechek protocol rather than just trying it.  We would have to stop some of the other things we are doing.

 

[Pen]

1 hour ago, Teaching3bears said:

It's not that they are too old for inulin in general.  From what I understand, he uses an antibiotic with adults and older teens because the inulin protocol is not effective enough to clean their gut.

Oh yes!  We have tried a ton of gut treatments and continue to do them.  That is partly why I am asking about the Nemechek protocol rather than just trying it.  We would have to stop some of the other things we are doing.

 

 

I’d personally be concerned about antibiotics and making things worse.   And I’d worry about killing off the good bacteria and letting bad ones, maybe something like clostridium, gain supremacy.  

 

What have you already been doing and what would change to do memechk?

Are they off sugar? 

Edited January 29, 2020 by Pen

[Teaching3bears]

50 minutes ago, Pen said:

 

I’d personally be concerned about antibiotics and making things worse.   And I’d worry about killing off the good bacteria and letting bad ones, maybe something like clostridium, gain supremacy.  

Yes, my big concern!

What have you already been doing and what would change to do memechk?

Are they off sugar? 

Yes, their whole lives!

 

[LarlaB]

10 hours ago, Teaching3bears said:

It is the add-on of the VNS stuff that set off red flags for me.  I have not heard enough good things about it and it did not seem related to the rest of his protocol.  I don't know if my kids would cooperate either.  What is involved on a physical basis?  

Oh ... he's selling his own supplements and olive oil now?  😞    

Did the inulin and oils help you significantly?

 

For VNS, is a lightweight ear clip attached to a small TENS unit....unless you buy his clip that attaches to draws current from a cellphone.  I believe full dose is 2 hours of VNS a day- can be worn will doing other things.

[Teaching3bears]

On 1/28/2020 at 10:34 PM, LarlaB said:

 

For VNS, is a lightweight ear clip attached to a small TENS unit....unless you buy his clip that attaches to draws current from a cellphone.  I believe full dose is 2 hours of VNS a day- can be worn will doing other things.

Yikes! My boys would not do this.

[exercise_guru]

I just joined the facebook group and I am looking to do inulin. I think Nemechek is from Arizona . They have a lot of doctors their like Andrew Weil. The vagus nerve stimulator was very interesting as my son has a Gammacore for his vestibular Migraines. I am reading the book right now trying to decipher the dosage of inulin to use. We already are on  a very restrictive diet for healng migraines so adding inulin isn't really much  more work than otherwise. For those of you that use the ear clip tens unit how on earth did you figure out the setting? My sons gammacore is calibrated but crazy expensive even with a prescription my insurance doesn't cover it. I had my son try acupuncture in the ear area and it sent his dizziness through the roof. 

[BendyStraw]

I have a 15yo who was diagnosed with autism before he turned 3.  He’s been a patient of Dr. Nemechek for almost 2 years and has made amazing gains.   I was extremely skeptical at the start, but the proof is in the gains my boy has made over time.  He’s still autistic, but he’s so much calmer, less irritable, less twitchy - it all amounts to a dramatic improvement in quality of life for he and his family.   Nemechek is not in it for the money (his prices are not any higher than most doctors) but if he can make some decent coin selling high-quality supplements that actually do what they’re supposed to, what’s the harm?  His protocol doesn’t work for all children with autism, but most improve.  When you have a child with ASD, any improvements feel like a miracle.  The most important ingredient of the protocol is patience - none of the gains happen over night.  Brain inflammation plays a major role in autism for a meaningful subset of people with autism, and there’s a connection with the gut.  I couldn’t be more grateful for Dr. Nemechek and his protocol.

[Catwoman]

ZOMBIE THREAD ALERT!

[Catwoman]

2 hours ago, BendyStraw said:

I have a 15yo who was diagnosed with autism before he turned 3.  He’s been a patient of Dr. Nemechek for almost 2 years and has made amazing gains.   I was extremely skeptical at the start, but the proof is in the gains my boy has made over time.  He’s still autistic, but he’s so much calmer, less irritable, less twitchy - it all amounts to a dramatic improvement in quality of life for he and his family.   Nemechek is not in it for the money (his prices are not any higher than most doctors) but if he can make some decent coin selling high-quality supplements that actually do what they’re supposed to, what’s the harm?  His protocol doesn’t work for all children with autism, but most improve.  When you have a child with ASD, any improvements feel like a miracle.  The most important ingredient of the protocol is patience - none of the gains happen over night.  Brain inflammation plays a major role in autism for a meaningful subset of people with autism, and there’s a connection with the gut.  I couldn’t be more grateful for Dr. Nemechek and his protocol.

Welcome to the forum, BendyStraw!

I would suggest that you start your own thread about this, rather than resurrecting a thread from the past. 🙂