Which genetic test is best?

Discuss autism diets and biomedical treatments of autism.

Moderator: ModeratorBill

mommy4ev
Posts: 31
Joined: Tue Jan 10, 2017 6:58 pm

Which genetic test is best?

Postby mommy4ev » Thu Jan 12, 2017 11:13 pm

Hello I hear a lot of good things about 23andme but my toddler cannot spit! I heard of Genomix, any reports?

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Sun Jan 15, 2017 12:13 am

We did 3 genetic tests. First was micro array from Quest designed for mutations thought to cause autism. It didn't include methylation or other mutations that Yasko checks. Then we did the whole exonerated sequencing from Baylor. This was the most expensive and the most useless test because Baylor would report only mutations that they think are relevant. They would give the raw data too, but in FastQ format that only few places can read at a exuberant price. Third was 23&me and it was the best. You can browse raw data online if you know the gene you are looking for. Or, you can download the data into about dozen websites that can read 23&me format and generate you a specific report. Some of these websites are free, some would charge $5-20. The most detail report is generated by promethease, which you can scan for different conditions like autism, aspergers, adhd, cancer, etc, and it only costs $5 life time, which means that if they discovered some genes being relevant to certain conditions, they would update the report at no extra charge. I started with these websites and ended up creating my own excel file with mutations that I found in the literature relevant. You have to do 23&me just because so many places can easily read their data easily, like almost no effort at all. We waited until my son could spit, but I heard that they can be flexible and accept a cotton swab. Contact them.

crazydaddy
Posts: 37
Joined: Wed Dec 07, 2016 1:05 pm

Re: Which genetic test is best?

Postby crazydaddy » Sun Jan 15, 2017 6:42 pm

FatherOf2 wrote:We did 3 genetic tests. First was micro array from Quest designed for mutations thought to cause autism. It didn't include methylation or other mutations that Yasko checks. Then we did the whole exonerated sequencing from Baylor. This was the most expensive and the most useless test because Baylor would report only mutations that they think are relevant. They would give the raw data too, but in FastQ format that only few places can read at a exuberant price. Third was 23&me and it was the best. You can browse raw data online if you know the gene you are looking for. Or, you can download the data into about dozen websites that can read 23&me format and generate you a specific report. Some of these websites are free, some would charge $5-20. The most detail report is generated by promethease, which you can scan for different conditions like autism, aspergers, adhd, cancer, etc, and it only costs $5 life time, which means that if they discovered some genes being relevant to certain conditions, they would update the report at no extra charge. I started with these websites and ended up creating my own excel file with mutations that I found in the literature relevant. You have to do 23&me just because so many places can easily read their data easily, like almost no effort at all. We waited until my son could spit, but I heard that they can be flexible and accept a cotton swab. Contact them.


For the 23andme testing which option do you need to choose, is it the $99 or the $199 option? I think the $99 says it's ancestry and $199 is ancestry+health?

Please help - I'm trying to get this ordered for my son...

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Sun Jan 15, 2017 11:03 pm

You need ancestry + health, the $200 test.

ArvadaMom
Posts: 10
Joined: Thu Jan 05, 2017 11:39 am

Re: Which genetic test is best?

Postby ArvadaMom » Mon Jan 16, 2017 10:40 am

I just wanted to chime in about the genetics testing- I'm really torn. I want to do 23andme for my son (for reasons noted above) but he is 16months old- getting that much spit? Long shot. Another mom told me about the swabs you can buy on Amazon to hold against the side of the catcher, but I still worry we won't be able to get enough.

I also read on another board about the company offering swabs as an alternative to the spit- but when I called 23andme they said they no longer offer that.

May just bit the bullet and order it today hoping for the best.

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Mon Jan 16, 2017 11:05 am

Just keep in mind that the likelihood of these genetic tests changing anything you are doing is very small. When I tried some things that I thought my son would benefit from based on his genetic tests, they didn't work as I expected. Even aspiegenes, who was here recently, tried to find correlations between mutations in different autistic children and eventually admitted that autism is an environmental disease. I personally think that autism should be treated as a brain injury, which could have happened from oxygen starvation in the womb or during birth, jaundice, falling down, vaccines. You just have to try different things and see what works. If it is such a big trouble to collect a saliva sample, I think you will be disappointed by how much genetic tests help you to navigate among so many treatment choices relative to the trouble it took to get the sample. IMHO.

crazydaddy
Posts: 37
Joined: Wed Dec 07, 2016 1:05 pm

Re: Which genetic test is best?

Postby crazydaddy » Mon Jan 16, 2017 1:48 pm

FatherOf2 wrote:Just keep in mind that the likelihood of these genetic tests changing anything you are doing is very small. When I tried some things that I thought my son would benefit from based on his genetic tests, they didn't work as I expected. Even aspiegenes, who was here recently, tried to find correlations between mutations in different autistic children and eventually admitted that autism is an environmental disease. I personally think that autism should be treated as a brain injury, which could have happened from oxygen starvation in the womb or during birth, jaundice, falling down, vaccines. You just have to try different things and see what works. If it is such a big trouble to collect a saliva sample, I think you will be disappointed by how much genetic tests help you to navigate among so many treatment choices relative to the trouble it took to get the sample. IMHO.


Hi yes, I think this is a great feedback but how do you go about to 'try what works' without making it the same as experimenting on your kid? Just trying different things and not knowing the side effects (some maybe until much later?) is very dangerous on a little one, don't you think?

Separate question - has there been any website that correlates the genetic testing results and the supplements or vitamins that those people carrying the mutations would benefit from? That would be immensely useful, don't you think?

Thanks

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Mon Jan 16, 2017 4:46 pm

crazydaddy wrote:Hi yes, I think this is a great feedback but how do you go about to 'try what works' without making it the same as experimenting on your kid? Just trying different things and not knowing the side effects (some maybe until much later?) is very dangerous on a little one, don't you think?

Separate question - has there been any website that correlates the genetic testing results and the supplements or vitamins that those people carrying the mutations would benefit from? That would be immensely useful, don't you think?

Thanks

Nutrahacker is a good website, where you can download your 23&me results and get the report about mutations and recommended supplements. They also have a supplement visualization tool. Just to demonstrate the usefulness of these supplement recommendations, here is what my son should take and avoid according to nutrahacker.

TAKE:
------
Zinc
Whey
Vitamin K
Vitamin E in tocotrienol form
Vitamin D3
Vitamin C
Vitamin B6
Vitamin B5
Vitamin B3
Vitamin B2
Vitamin B12
Vitamin A
TMG
Theanine
Taurine
Sulforaphane
Sage
Rosemary
Rooibos
Riboflavin for high blood pressure
Ribo-5-phosphate
Reduced forms of folate
Progesterone
Potassium
Possibly ketogenic diet
Plant oils
Piracetam
Phosphatidylserine
Phosphatidylcholine
Ornithine
Omega-3 fatty acids like fish oil
NAC
Multiple minerals
Molybdenum
Methyl B12
Manganese
Magnesium
Lithium orotate
Leucine
L-methylfolate
Induce with broccoli
Idebenone
Hydroxy B12 (hydroxycobalamin)
Glycine
Glucarate
Fiber
Exercise
Diindolylmethane
Curcumin
Coffee
Cardamom
Cabbage
Beta-alanine

AVOID:
--------
Vitamin E
Substrates of this enzyme
Smog
Noise (greater chance for hearing loss)
Nicotine
MSG
Methyl donors
Methyl B12
High fat diet
Green tea
Grapefruit
Folinic acid
Folate
Estrogens
EGCG
Curcumin
Cumin
Cannabis
Androgens
Alcohol

These are some controversial suggestions. For example, my son should and shouldn't take methyl B12, folate, and vit E. This because some mutations need them and some are made worse. In the end, I have to try these things to see if they do anything. Genetics is not a complete picture of a person. There is also epigenetics, which is by far more important in our cases. Eventually, you have to identify what you are trying to treat (not autism as a whole, but specific symptoms such as food allergies, poor focus, gut function, abnormal EEG, etc) and try different things. I wouldn't give anything to my son that causes long-term side effects even if his genetics tell me he needs it. For instance, nutrahacker tells me that my son needs beta alanine. I wouldn't touch that thing with a 10' pole. You have to read about supplements and drugs, educate yourself and pretty much become your own doctor.

mommy4ev
Posts: 31
Joined: Tue Jan 10, 2017 6:58 pm

Re: Which genetic test is best?

Postby mommy4ev » Tue Jan 17, 2017 2:13 am

Wow!!! I really appreciate the comments and advice. As we all know starting biomed is so overwhelming! I want to help my little guy but I also don't want to add too many supplements or procedures that could actually cause harm! Maybe I'll just start with the OAT test...thank you so much!

i-jerry
Posts: 170
Joined: Wed Dec 21, 2016 7:46 pm

Re: Which genetic test is best?

Postby i-jerry » Mon Sep 25, 2017 6:16 am

FatherOf2 wrote:
crazydaddy wrote:Hi yes, I think this is a great feedback but how do you go about to 'try what works' without making it the same as experimenting on your kid? Just trying different things and not knowing the side effects (some maybe until much later?) is very dangerous on a little one, don't you think?

Separate question - has there been any website that correlates the genetic testing results and the supplements or vitamins that those people carrying the mutations would benefit from? That would be immensely useful, don't you think?

Thanks

Nutrahacker is a good website, where you can download your 23&me results and get the report about mutations and recommended supplements. They also have a supplement visualization tool. Just to demonstrate the usefulness of these supplement recommendations, here is what my son should take and avoid according to nutrahacker.

TAKE:
------
Zinc
Whey
Vitamin K
Vitamin E in tocotrienol form
Vitamin D3
Vitamin C
Vitamin B6
Vitamin B5
Vitamin B3
Vitamin B2
Vitamin B12
Vitamin A
TMG
Theanine
Taurine
Sulforaphane
Sage
Rosemary
Rooibos
Riboflavin for high blood pressure
Ribo-5-phosphate
Reduced forms of folate
Progesterone
Potassium
Possibly ketogenic diet
Plant oils
Piracetam
Phosphatidylserine
Phosphatidylcholine
Ornithine
Omega-3 fatty acids like fish oil
NAC
Multiple minerals
Molybdenum
Methyl B12
Manganese
Magnesium
Lithium orotate
Leucine
L-methylfolate
Induce with broccoli
Idebenone
Hydroxy B12 (hydroxycobalamin)
Glycine
Glucarate
Fiber
Exercise
Diindolylmethane
Curcumin
Coffee
Cardamom
Cabbage
Beta-alanine

AVOID:
--------
Vitamin E
Substrates of this enzyme
Smog
Noise (greater chance for hearing loss)
Nicotine
MSG
Methyl donors
Methyl B12
High fat diet
Green tea
Grapefruit
Folinic acid
Folate
Estrogens
EGCG
Curcumin
Cumin
Cannabis
Androgens
Alcohol

These are some controversial suggestions. For example, my son should and shouldn't take methyl B12, folate, and vit E. This because some mutations need them and some are made worse. In the end, I have to try these things to see if they do anything. Genetics is not a complete picture of a person. There is also epigenetics, which is by far more important in our cases. Eventually, you have to identify what you are trying to treat (not autism as a whole, but specific symptoms such as food allergies, poor focus, gut function, abnormal EEG, etc) and try different things. I wouldn't give anything to my son that causes long-term side effects even if his genetics tell me he needs it. For instance, nutrahacker tells me that my son needs beta alanine. I wouldn't touch that thing with a 10' pole. You have to read about supplements and drugs, educate yourself and pretty much become your own doctor.


Hi father of 2, my son has similar recommendation compare with your son. He should have broccoli, cabbage ... and avoid mb12, VE, grapefruit, cumin and turmeric.
Do you give your son broccoli as vegetable or supplement?

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Mon Sep 25, 2017 7:33 pm

I have been giving my son steamed broccoli almost every day this summer. It didn't make a difference. I also have been giving him different brands of Sulfarophane - totally useless. I am now eating the rest of the pills. I will be extremely surprised if anyone had a lasting effect (for more than a month) from Sulfarophane.

Nikkie111
Posts: 359
Joined: Thu Sep 24, 2015 6:26 am

Re: Which genetic test is best?

Postby Nikkie111 » Tue Sep 26, 2017 10:35 am

FatherOf2 wrote:I have been giving my son steamed broccoli almost every day this summer. It didn't make a difference. I also have been giving him different brands of Sulfarophane - totally useless. I am now eating the rest of the pills. I will be extremely surprised if anyone had a lasting effect (for more than a month) from Sulfarophane.

Have you actually tried Enduracell? That's pretty much the only thing that worked on my little one and actually got him to start responding and talking bit more. But it started having effect after two weeks... and maybe it's working cause I give pharmaNAC same time...

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Tue Sep 26, 2017 12:14 pm

Yes, tried enduracell, probably for about 2 years. Tried other brands too, including the one they used in clinical studies.
It is interesting that you mentioned NAC. I started giving my son NAC-Sustain 3 days ago, and I see him being calmer, less stimming. I am only giving him half a tablet, which should be around 300mg, once a day. A good start so far.

Nikkie111
Posts: 359
Joined: Thu Sep 24, 2015 6:26 am

Re: Which genetic test is best?

Postby Nikkie111 » Tue Sep 26, 2017 4:04 pm

FatherOf2 wrote:Yes, tried enduracell, probably for about 2 years. Tried other brands too, including the one they used in clinical studies.
It is interesting that you mentioned NAC. I started giving my son NAC-Sustain 3 days ago, and I see him being calmer, less stimming. I am only giving him half a tablet, which should be around 300mg, once a day. A good start so far.

Oh wow!! You could retry Enduracell with nac as an experiment - I think they are supposed to work together !

Which brand did you use? I assume you already started pharmaNAC and didn't do the job?

FatherOf2
Posts: 1668
Joined: Mon Mar 11, 2013 1:37 am

Re: Which genetic test is best?

Postby FatherOf2 » Wed Sep 27, 2017 12:29 am

I tried Pharma NAC on my son years ago and didn't like it. I think the problem with most NAC supplements is that they release NAC fast, allowing it to exit the system in a couple of hours. So, you get a large dose in short period of time. I prefer smaller doses being released through a prolonged time. From NAC Sustain mfr:

The advanced bilayer Sustain™ tablets combine 1/3 Quick Release and 2/3 Sustained Release formats to both immediately raise and maintain blood levels over a longer period of time.* NAC Sustain® releases in the small intestine over an 8 hour period, compared to the 1.5 hour biological half-life of NAC in the bloodstream.* Protected by U.S. Patent # 6,623,754.

Is there a literature suggesting that NAC + Sulforaphane have combined benefits? Both are sulfur containing substances. Yeast will be a big problem. I just don't see how NAC would activate Sulforaphane.

Nikkie111
Posts: 359
Joined: Thu Sep 24, 2015 6:26 am

Re: Which genetic test is best?

Postby Nikkie111 » Sun Oct 01, 2017 6:01 am

FatherOf2 wrote:I tried Pharma NAC on my son years ago and didn't like it. I think the problem with most NAC supplements is that they release NAC fast, allowing it to exit the system in a couple of hours. So, you get a large dose in short period of time. I prefer smaller doses being released through a prolonged time. From NAC Sustain mfr:

The advanced bilayer Sustain™ tablets combine 1/3 Quick Release and 2/3 Sustained Release formats to both immediately raise and maintain blood levels over a longer period of time.* NAC Sustain® releases in the small intestine over an 8 hour period, compared to the 1.5 hour biological half-life of NAC in the bloodstream.* Protected by U.S. Patent # 6,623,754.

Is there a literature suggesting that NAC + Sulforaphane have combined benefits? Both are sulfur containing substances. Yeast will be a big problem. I just don't see how NAC would activate Sulforaphane.

I'm not sure I've seen something scientific, more like blogs and parents posts - I've seen some studies as well which I don't understand at all!!!
It definitely finally does something for my youngest which is hard to beat!

I didn't know about the sustain thanks for that!!!

Marya
Posts: 216
Joined: Tue Feb 21, 2017 4:14 pm

Re: Which genetic test is best?

Postby Marya » Mon Oct 02, 2017 5:52 am

Nikkie111 wrote:I'm not sure I've seen something scientific, more like blogs and parents posts - I've seen some studies as well which I don't understand at all!!!
It definitely finally does something for my youngest which is hard to beat!

I didn't know about the sustain thanks for that!!!

Did NAC work well with your son Nikkie? And in which way?
I've tried it myself and it is very good. I think it takes obsessive thoughts away, plus it helped my memory somehow. I wouldn't be without it.

Nikkie111
Posts: 359
Joined: Thu Sep 24, 2015 6:26 am

Re: Which genetic test is best?

Postby Nikkie111 » Mon Oct 02, 2017 8:56 am

Marya wrote:
Nikkie111 wrote:I'm not sure I've seen something scientific, more like blogs and parents posts - I've seen some studies as well which I don't understand at all!!!
It definitely finally does something for my youngest which is hard to beat!

I didn't know about the sustain thanks for that!!!

Did NAC work well with your son Nikkie? And in which way?
I've tried it myself and it is very good. I think it takes obsessive thoughts away, plus it helped my memory somehow. I wouldn't be without it.

yes my little one who just doesn't respond to anything, not even Valtrex which has been a saviour for my oldest, responds pretty well so far on PharmaNAC and Enduracell. I'm giving him also mito stuff (I'm just convinced he has an issue there!) like PQQ, Carnosine and carnitine and he's started talking in sentences (not all the time but still....) and he's engaging more, very happy, looking at me, jumping out of nowhere, responding, playing and no stimming at all! He needs to talk more, but he's definitely doing more than before when he regressed big time, wasn't looking,smiling, responding, nothing!!!
I don't think 1 thing is working, it's possibly combination of stuff....So lets see.....

which one did you try? tempted to get Fo2's one...

Marya
Posts: 216
Joined: Tue Feb 21, 2017 4:14 pm

Re: Which genetic test is best?

Postby Marya » Mon Oct 02, 2017 11:16 am

Nikkie111 wrote:yes my little one who just doesn't respond to anything, not even Valtrex which has been a saviour for my oldest, responds pretty well so far on PharmaNAC and Enduracell. I'm giving him also mito stuff (I'm just convinced he has an issue there!) like PQQ, Carnosine and carnitine and he's started talking in sentences (not all the time but still....) and he's engaging more, very happy, looking at me, jumping out of nowhere, responding, playing and no stimming at all! He needs to talk more, but he's definitely doing more than before when he regressed big time, wasn't looking,smiling, responding, nothing!!!
I don't think 1 thing is working, it's possibly combination of stuff....So lets see.....

which one did you try? tempted to get Fo2's one...

WOW!! I'm very happy to hear that :D Please keep us updated.. It seems that NAC and Mito stuff are doing a lot. Are you giving anything else like Lion's mane?
I'm taking NAC from Jarrow, non sustain because it is cheaper. I would try the sustain one in the future.
i'm taking only 500mg these days but I used to take 1000mg before. I've reduced the dose because I have started with other stuff. Btw, I'm taking Lion's mane and it seems to help. CDP-Choline is my favourite so far.

Nikkie111
Posts: 359
Joined: Thu Sep 24, 2015 6:26 am

Re: Which genetic test is best?

Postby Nikkie111 » Mon Oct 02, 2017 3:48 pm

Marya wrote:
Nikkie111 wrote:yes my little one who just doesn't respond to anything, not even Valtrex which has been a saviour for my oldest, responds pretty well so far on PharmaNAC and Enduracell. I'm giving him also mito stuff (I'm just convinced he has an issue there!) like PQQ, Carnosine and carnitine and he's started talking in sentences (not all the time but still....) and he's engaging more, very happy, looking at me, jumping out of nowhere, responding, playing and no stimming at all! He needs to talk more, but he's definitely doing more than before when he regressed big time, wasn't looking,smiling, responding, nothing!!!
I don't think 1 thing is working, it's possibly combination of stuff....So lets see.....

which one did you try? tempted to get Fo2's one...

WOW!! I'm very happy to hear that :D Please keep us updated.. It seems that NAC and Mito stuff are doing a lot. Are you giving anything else like Lion's mane?
I'm taking NAC from Jarrow, non sustain because it is cheaper. I would try the sustain one in the future.
i'm taking only 500mg these days but I used to take 1000mg before. I've reduced the dose because I have started with other stuff. Btw, I'm taking Lion's mane and it seems to help. CDP-Choline is my favourite so far.

No for him I'm not giving lion's mane he's too young so taking it easy- but I do give phosphatidylserine with high omega 3 and it definitely helped as well!

Im taking myself lion's mane , as I started detecting depression symptoms on me, something I never had before but work and all this autism cr*p especially on my little one who's a slow responder, it's taken it's toll and I started going down the depression route..... anyway once I realised what's happening I started immediately high omega3 with lion's mane, alpha gpc choline, rhodiola and anitacetam and I feel fantastic!!!!!!!! Extremely energetic, clever and positive so waiting a bit and then trying these on my boys!!!!
Lion's mane won't work much unless you add choline (alpha gpc if possible otherwise anything you have) and a nootropic if possible even for a while just few days

Really glad it's doing great job on you xxxx


Return to “Diet and Biomedical Treatments for Autism”