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Guess your genetics (Yasko related...)

post #1 of 307
Thread Starter 
As most of you know, we've recently run Dr. Amy Yasko's genetics test for DS, and are following a lot of her protocol. It involves targeted supplements to support each of his genetic mutations (she tests for a bunch of different gene mutations related to the methylation cycle).

We have discovered a couple of really important things for DS that I hadn't figured out from all the work I did last year. One, he needs a ton of pancreatic support (which addresses digestion, vitamin D use, blood sugar regulation, general gut environment). Two, he needs ridiculous amounts of B12 compared to the normal person, and he needs it in non-methyl B12 form (mostly hydroxy, some adenosyl). Three, he had a lot of neurotransmitters out of balance, which can be a result of poor methylation due to mutations. He has some classic risk factors for ADHD, aggression, and anxiety, although at the moment we only see those if he is under severe stress (however, it's a good window on what he might have grown into). We are already starting to see the neurotransmitters balancing as we implement her protocol.

For anyone who has confusing health issues that don't seem to be addressed by a single answer (allergies, intolerances, metals, etc), I'd think it might be an interesting route to explore. I know it's expensive though, so I thought I'd lay out a few basic things that might be interesting to consider:

1) MTHFR & MTRR mutations. We've talked here quite a bit about the MTHFR mutations, which mean you can't use folic acid very well, and need folate and/or folinic acid. To me, if you aren't doing the genetics testing, it's pretty easy to just assume you could benefit from folate. I think most of us around here are doing that part. Ironically, this wasn't a mutation DS has. MTRR is the other big player in the methylation cycle, and it messes up your ability to recycle B12. Which means you need LOTS of B12, because you can't reuse it very well. There are some gentler MTRR mutations, and some tougher ones. DS has two of the tougher ones. Yasko says he'll need B12 via multiple routes (oral, sublingual, nasal, patch, injection). Right now we're just ramping up the sublingual drops/spray, we'll see where that gets us. But just as an indicator, he is currently on 8mg/day of hydroxy B12, 4mg/day of adenosyl B12, and that is probably not as high as she'll want him to be.

Guessing at diagnostics - for those of you with signs of poor methylation function (seasonal allergies, histamine reactions, get sick a lot), where folate doesn't have a big bang impact (or not enough), try a significant increase in your B12. It often causes detox initially, so go slow, and see how you feel after the few days of detox are over. DS detoxed each time we added a drop for the first 3-4, then I've been able to add without problem. Best evidence i have it's working is that he kicked his whooping cough in the butt - this is my kid who got the extreme version of every kind of sick.

2) Pancreatic support. There are several gene mutations that can play into this, but what happens is that your pancreas is "slow" on several functions:

a) blood sugar regulation (mood swings, crashes when you don't eat, etc)
b) pancreatic enzymes (poor digestion, sometimes in non-obvious ways - DS had low amino acids on a pee test, even though he eats lots of protein - I never guessed he wasn't digesting protein well, it wasn't obvious from his poop!). Poor digestion = bad gut flora, so many people find this is a core underlying cause in the inability to permanently improve their gut
c) glutamate -> GABA conversion. This is a big one for many autistic kids, because glutamates are excitatory (wild, unfocused, non-sleeping kids), and GABA is calming (focus, language, stability, better sleep)

I talked in the main chat thread about trying Yasko's special digestive enzyme blend as a good trial for if you need pancreatic support. If you discover those are beneficial, then extra vit D & K2, ground up pancreas, reducing glutamates and possibly supping GABA/valerian root could all be helpful in addition.

OK, got to stop for now, I'll add more as I have a chance/think of it!
post #2 of 307
Wow. That's really interesting. Thank you for sharing.

I can't afford the genetics but you wrote a lot that fits us. I strongly suspect I and Andrew (and likely Caleb too) have glutamate issues.

Caleb has allergies that I can't get under control. He also came back with poor digestive enzyme activity in his metametrix even with enzymes. Folate doesn't do anything for him that I can tell. I'm using houston enzymes with him. Do you think the Yasko is superior? Can you tell me the label information on it please?
I have her hydroxy-b12 drops that I'm using with him. I stopped methyl b12 after reading up on it and realizing not everyone could process that form well. How many drops would you work up to?
post #3 of 307
In case people want to pursue it, can you post the link to the test again?
post #4 of 307
Quote:
Originally Posted by mamafish9 View Post
2) Pancreatic support. There are several gene mutations that can play into this, but what happens is that your pancreas is "slow" on several functions:

a) blood sugar regulation (mood swings, crashes when you don't eat, etc)
b) pancreatic enzymes (poor digestion, sometimes in non-obvious ways - DS had low amino acids on a pee test, even though he eats lots of protein - I never guessed he wasn't digesting protein well, it wasn't obvious from his poop!). Poor digestion = bad gut flora, so many people find this is a core underlying cause in the inability to permanently improve their gut
c) glutamate -> GABA conversion. This is a big one for many autistic kids, because glutamates are excitatory (wild, unfocused, non-sleeping kids), and GABA is calming (focus, language, stability, better sleep)

I talked in the main chat thread about trying Yasko's special digestive enzyme blend as a good trial for if you need pancreatic support. If you discover those are beneficial, then extra vit D & K2, ground up pancreas, reducing glutamates and possibly supping GABA/valerian root could all be helpful in addition.
In the a, b, c choices above, am I reading it right that you could see symptoms in, say, category a, maybe b, but not really c, and that's probably just a gene combo? DH's family is still a bit mysterious to me but they have very few mood issues (except what seems like a low-level depression-type thing that generally correlates to years of not eating great). Can I mix and match symptoms like that? I don't need to know exact genes, I don't think, I just want to decide how to experiment on him.

I'm waiting for approval to join Yasko's forum... how clearly are things laid out there? Any getting-started docs, or do you just lurk and learn the ropes? Or would it really just be better to read her book, you said it was mostly online, Pathways to Recovery?

And thanks for writing this out... so helpful to see it laid out like this.
post #5 of 307
Thread Starter 
Quote:
Originally Posted by sbgrace View Post
Wow. That's really interesting. Thank you for sharing.

I can't afford the genetics but you wrote a lot that fits us. I strongly suspect I and Andrew (and likely Caleb too) have glutamate issues.

Caleb has allergies that I can't get under control. He also came back with poor digestive enzyme activity in his metametrix even with enzymes. Folate doesn't do anything for him that I can tell. I'm using houston enzymes with him. Do you think the Yasko is superior? Can you tell me the label information on it please?
I have her hydroxy-b12 drops that I'm using with him. I stopped methyl b12 after reading up on it and realizing not everyone could process that form well. How many drops would you work up to?
Rachelle, Dr. Yasko has several supplements she recommends for GABA/glutamate balance - and says she sees issues in almost every spectrum child she works with. Can you get a urine amino acids test covered under your insurance? That will tell you a lot of things, including the numbers for GABA & glutamate - you want balance between the two, and glutamate in normal ranges (I'm happy to help interpret if you can get the test run). It also measures ammonia & taurine levels - if those are out of whack, it's good clues to a couple of other genetics issues a lot of spectrum kids have. Or I know you have some metamatrix tests you've run, maybe they've measured some of the same values?

In the meantime, the supps she recommends for GABA/glutamate balance are GABA, valerian root, grape seed extract, and pycnogenol. All available on her site, along with her digestive enzymes. GABA can also help a lot with language (we are seeing that), don't know if that's an issue for your little guy or not. Please note, I have no idea about x-contamination issues with these enzymes, it's not a problem for us, so do your usual thorough due diligence.

We were on Enzymedica & Houston enzymes, and they were very helpful. Dr. Yasko's enzymes were incredibly more effective - better poops, and he can eat apples & corn now, two foods that gave him huge gut pains on the old enzymes. I also see less undigested food when he eats veggies, raisins & dried blueberries digest instead of coming out whole... So for him, HUGE difference and improvement over the old enzymes. And we saw lots of die off with the enzymes as well (pretty sure he had clostridia overgrowth), so it has improved his gut environment as well, without directly going after the bacteria.

Hydroxy B12 is definitely the way to go - and mixing in a little adenosyl & cyano (the latter is good for visual stims apparently) can be good as well. Even for people who tolerate methyl groups well, Dr. Yasko tends to suggest using other methyl donors (SAMe, quercetin, etc). How many of the B12 drops are you currently using? My son is up to 8 drops daily of the hydroxy, 2 of the adenosyl - I put in a spray bottle and just squirt him every hour or two, it works best the more you can spread it out. Your son certainly sounds like he has stuck methylation. Again, if you can get insurance to pay for it, a metabolic analysis profile test (genova) is really helpful, lots of markers for methylation & B12 status, and Kreb's cycle function.

Basically, Dr. Yasko uses the genetics to provide a list of likely needed supps, and then uses those two tests (amino acids & metabolic analysis) to see how well you're responding, and to tweak the supps as necessary. So I suspect you could take pretty good guesses at some of the genetics and supp accordingly if you could just run the tests (or something similar - again, I'm happy to look at tests for you if you think that would help - I'm no expert, but I might be able to at least point you in a few directions).

If you give me more background on your son's typical autism traits (stimmy, sleep, anxiety, moods, etc), that could help guess at some of the genetics as well - our kids tend to have strong outward indicators for a lot of these genetic mutations. (Feel free to move this to PM if you like!). I'd like to share what I've learned if it could help, it's made big differences already for my son.

Quote:
Originally Posted by chlobo View Post
In case people want to pursue it, can you post the link to the test again?
http://www.holisticheal.com/health-t...-analysis.html

If you want to see a sample, you can click on one on that page as well - so you'll see what the report looks like, and also the recommended supplements by mutation.
post #6 of 307
Thread Starter 
Quote:
Originally Posted by tanyalynn View Post
In the a, b, c choices above, am I reading it right that you could see symptoms in, say, category a, maybe b, but not really c, and that's probably just a gene combo? DH's family is still a bit mysterious to me but they have very few mood issues (except what seems like a low-level depression-type thing that generally correlates to years of not eating great). Can I mix and match symptoms like that? I don't need to know exact genes, I don't think, I just want to decide how to experiment on him.

I'm waiting for approval to join Yasko's forum... how clearly are things laid out there? Any getting-started docs, or do you just lurk and learn the ropes? Or would it really just be better to read her book, you said it was mostly online, Pathways to Recovery?

And thanks for writing this out... so helpful to see it laid out like this.
There are some getting started docs in the forum, but at some point, it assumes you know your genetics. I think though, that while some of my son's genes were a surprise, some trial and error could probably help you figure out quite a bit.

For the pancreatic support - I wouldn't have thought my son had any of a, b, or c. I never equated wanting to nurse every two hours with blood sugar issues. And it didn't occur to me that he craved protein because his body was low in amino acids because he did a bad job digesting it.

But the vast majority of kids on Yasko's forums benefit from the pancreatic supports. I put my DH on them (I think he's the source of those genes), and he doesn't get so cranky without food anymore either.

Low level depression, that can come from the pancreatic issues resulting in low serotonin. So really, I'd try the pancreatic stuff - it's one of those things like B12 - there's not much harm in trying, and if it works for you, then yay, you've found a key.
post #7 of 307
Thread Starter 
Rachelle, one more thing about the Yasko enzymes. DS is not small, but he gained 4lbs in the first month he was on them. (After being on the Enzymedica & Houston enzymes previously). So just one more piece of evidence he was digesting better.
post #8 of 307
I'm thinking it's worth a shot with DH, I wanted to make sure, though, that lack of mood issues in him and his family wouldn't rule this out.

DH's family does tend toward eating lots of meat--if they paired it with green veggies, I think a lot of things would be different!

And wow, wouldn't it be cool if this helped with the low level stomach upset both kids, but moreso DD (DH's clone) is prone to.
post #9 of 307
Thread Starter 
Nope! Because genes interact, I think it depends what else you have going on as well. There's another couple of genes she tests that dictate how fast serotonin & dopamine break down, for example - and they can mellow out the mood impact of the pancreatic mutations. There are also people in the Yasko forums reporting really good results from the pancreatic supports even without the genetic mutations. So I think it's a really good piece to try, especially if you're kind of "stuck".

It seems to apply to a LOT of autistic kids, and since lots of us here in the allergies forum share some biochemical/nutritional similarities, I just thought it was a useful piece to bring here and see if it works for folks. Same with the high doses of hydroxy B12 - I know there are several people struggling with histamine/seasonal allergy/immune issues that folate doesn't fix, so again, maybe a piece for those folks to consider. They're both pretty low risk trials with potentially high payoff. I'm so curious to see how the pancreatic stuff works for the bunch of you that are considering trying it!
post #10 of 307
Fantastic information Deb. Thank you so much.
post #11 of 307
When you re-mentioned extra B12, it made me consider more than I'm giving DS. I know our digestion being off is part of getting sick, but given how much improvement I saw a few winters ago, and I felt like the kids were more caught-up re: detoxification, they were less bogged down then, so it seems worth a shot.

DH actually seems interested in trying this (he just got home from work), this may be a very productive summer for us.
post #12 of 307
Thread Starter 
Cool! Ooooohhh - Yasko says (man, those are my two favorite words at the moment, do I sound like a groupie yet???) that B12 is incredibly important for general gut environment, pH in particular. For those kids with "tough" MTRR mutations, she often sees pretty bad gut flora, and says you won't make long term progress on that until you get B12 up. Glad your DH seems open to trying some things - I hope some of it works!
post #13 of 307
I really want to do this test. I'm thinking of trying it for myself first but I know the kids could use it too. DD STILL has loose poops and hasn't responded to anything yet (copious amounts of supps, probiotics, enzymes of different sorts), homeopathy, etc. Maybe I"ll do us both.
post #14 of 307
Thread Starter 
Quote:
Originally Posted by chlobo View Post
I really want to do this test. I'm thinking of trying it for myself first but I know the kids could use it too. DD STILL has loose poops and hasn't responded to anything yet (copious amounts of supps, probiotics, enzymes of different sorts), homeopathy, etc. Maybe I"ll do us both.
It really empowered me to know what to try next for DS. We made a ton of progress last year, and then hit a wall after Christmas, and I felt like I was shooting in the dark. In the meantime though, maybe put her back on the Yasko digestive enzymes and give it a week or so?
post #15 of 307
I've been all excited about getting this test done on DS1 and now I see that they won't accept samples from Maryland. WTF? So frustrating....
post #16 of 307
Thread Starter 
Quote:
Originally Posted by lastrid View Post
I've been all excited about getting this test done on DS1 and now I see that they won't accept samples from Maryland. WTF? So frustrating....
Laws in Maryland and NY, I think, so they can't. Do you have a friend in another state? That's how most people avoid that issue.
post #17 of 307
Wow this is so interesting! Thank you for sharing this

I'm really considering the enzymes for DD.
post #18 of 307
Thread Starter 
Quote:
Originally Posted by mom61508 View Post
Wow this is so interesting! Thank you for sharing this

I'm really considering the enzymes for DD.
LOL - join the big experiment, I think several people are going to try them.
post #19 of 307
Quote:
Originally Posted by mamafish9 View Post
LOL - join the big experiment, I think several people are going to try them.
The genetics test sounds great too but I wonder If something like that would really be worth it for DD. We don't have any *major* issues but a lot of little things that I haven't noticed an improvement in through enzymes and diet. I have some more major things going on with me so maybe it would be more reasonable for me to consider it
post #20 of 307
Could you do me a huge favor and link to the "pancreatic support" please? (Or give me something I can google).
My mind is a mess with all this supps and reactions stuff as it is- I can't find where you first linked it.
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