CuringAutismBlog

Hi folks,
I posed a question to Amy Yasko's discussion board at http://www.ch3nutrigenomics.com/
. Here's the question: Will my son have to be on the ammonia RNA for the rest of his life, at megabux per day?
Here's the answer: He will have to be on it for a long time (forever?), but the maintenance amount he takes will eventually decrease somewhat. In the short term it may actually increase, however.
I also asked Amy's store whether the RNA ammonia formula could be bought in bulk, and the answer was no, in fact the $85 per 24-mL bottle is a bargain compared to the previous price of $110. (Dosage is 0.5 mL 3 times per day. So a bottle contains 16 days' worth. So at $85 per 24 mL, that's $5.31 per day, and $1.77 per dose.)
I wish the insurance companies would cover this! They cover other pricier meds for Mike. But of course this is not proven. Perhaps it is deductible as a medical expense.

This concerns me because I'd like to take the stuff too, and maybe get some other relatives to take it.

Mike is taking his remedies for the CBS mutation, and so we are in a holding pattern for a month. So far his behavior seems pretty much normal. When we start detox in a little less than a month, we can expect it to get worse, then better.

Mike has been on the CBS Up-Regulation protocol for three days now. He has adjusted to it OK, and isn't showing any major behavior changes. You recall, this part of the protocol is a preliminary to the main part where the methylation cycle is supplemented, causing some detox. This preliminary CBS Up-Regulation protocol lasts a month.

What I wish I knew is, does he have to be on it for the rest of his life? The CBS Up-Regulation Protocol costs at least $5 per day, mostly for the RNA "ammonia" formula.

Here is what I am ordering for CBS Treatment:

Ammonia Support RNA formula, each $85, ordering two
Yucca 60 capsules $17.46
Curcumin 60 capsules $22.42
Charcoal 100 capsules $9.99
Magnesium Citrate 90 capsules $11.00
Urine Amino Acids Test Kit $275
Urine Toxic & Essential Elements Test Kit $190

Ulp,with shipping that comes to $714.73.

Since I have a brother who is autistic (did not speak until age 5) and a son, Mike, who has the CBS biggie mutation, it is logical to suppose that I also have the mutation. For some reason females are less likely to display autism than males; perhaps there is some genetic reason for that, or possibly estrogen provides a beneficial shield from the effects of the gene.

Personally I have been struggling with my health since the age of 42 when I entered peri-menopause. (Previously I had some problems with hypoglycemia, but they were resolvable with diet.) I don't want to go into a big long list of my complaints, but they have included depression, thinning skin, foggy thinking at times, and excess insulin in my bloodstream. (For the past few years I have treated myself for these by putting myself on a very low carb diet, which allows me to get along OK.) All my complaints can be caused by the excess ammonia caused by a CBS up-regulation mutation. My autistic brother has also had increasing problems in his mid and late forties.

So I am interested in trying the CBS up-regulation regimen too. I will try it first on Mike, as agreed on with my husband. There is a cost involved, of course, and handing it all out to nearly everyone in the family would be expensive.

In order to conrol the biggie mutation, the CBS up-regulation, Mike needs to take supplements just for that mutation for a month before continuing on to more general support for the methylation cycle. That is because anything added to the methylation cycle for now will only produce ammonia, which is bad.

The supplements he needs now are:
Ammonia support RNA 0.5 ml, 3 times a day
Yucca on high protein foods, or 1/2 yucca capsule per day
curcumin one capsule per day
charcoal and magnesium citrate once a week at bedtime
Ambrotose
molybdenum
zinc
BioNativus trace minerals
HHC general vitamin, 2 per day.

He is already taking the last five items.

In addition he needs to be on a low-protein diet, drinking either no milk or raw, non-homogenized milk.

I am going to get these supplements mostly at Dr. Amy's vitamin store, www.holisticheal.com.
The dosages are available at this Web site:
href="http://home.comcast.net/%7Eyaskobuddies/wsb/html/view.cgi-showresources.html-TopRes-3-2E-20Supplements.html">supplement
dosages

I also need to buy some amino acid urine test packages, to be able to run the tests to monitor progress from time to time.

# posted by Phyllis Wheeler @ 9:38 AM 0 Comments Links to this post

What is Mike's behavior like? He is very impulsive and lives in the moment. He has extreme difficulty with amusing himself, and wants attention all the time. He argues with authority more than his peers. This would be typical behavior for a very young child, not a 14-year-old. His real diagnosis is PDD-NOS, for pervasive developmental disorder, not otherwise specified.

There is a theory that a hallmark of autism is lack of mirror cells in the brain. These mirror cells allow the individual to understand what someone else is thinking and might do next. Mike is unusual in that he does seem to have mirror cells. He can predict what I will do next, if he can focus on that. He can see emotion on my face and mirror it. For example, at his eighth grade graduation recently, I was looking at him with misty eyes from across the room, and he teared up too. This is something his sister Shannon would not do. Her diagnosis is Asperger's. She is 19. Of course, if this protocol is of value for Mike, we will try it on her too, if she is willing.

I am reading through the info sent along with Mike's test results.

It appears that among others, Mike has "the biggie" mutation, a mutation that increases the production of the CBS enzyme. This one is called the CBS C699T mutation. That is, gene number 699 should have been a C and is actually a T. Someone has mapped this gene to CBS overproduction.

Here is what Amy Yasko says in her book Genetic Bypass, page. 52:
"Thus far the genetics indicate that a majority of older autistic children carry the CBS C699T mutation. Younger chlidren are presenting with autism carrying only mutations in MTR, MS_MTRR and MTHFR (Mike has those too). The CBS C699T mutations are what I would call the 'trump card.' The CBS C699T mutations tend to override any other mutations as they can deplete all of the intermediates of the methionine pathway."

So, why are the younger children autistic with lesser mutations?
"At one time it may have been necessary to have mutations like the CBS C699T that have a significant impact on the entire methylation pathway in order for autism to occur. Today, it appears that the bar has been lowered, and the 'lesser' mutations are sufficient to cause autism. I believe this shift is due in part to the increase in heavy metal exposure from vaccines and the environment as well as the more intensive and accelerated vaccination program."

As far as treatment goes, we have to use supplements to address this CBS mutation first, before we can address any of the others. That's because of its function; it basically causes all the good things to leak away from the methylation pathway, and make lots of ammonia instead. That's not good.

We are still in treatment phase Step One. I had added all the supplemnts I bought gradually, with the RNA drops last. We started those on Thursday. By Saturday, Mike's behavior was very off-kilter. So I stopped giving him the RNA drops for now. I am guessing that the CBS up-regulation is causing the effect of the RNAs to be bad rather than good.

We got Mike's blood test results today. Of the 14 mutations screened for, he has eight to varying degrees. Two are in the "very strong support needed" category, or 4 out of 5 where 5 is extremely bad. Three others are in the 3 out of 5 range. The results came with a nice graph. Here it is.

Mike has been on some of his Step One supplements for a week now. At times he seems a bit hyper, but that is to be expected as his methylation cycle gets going and detox starts. Today we started with about five more supplements, the liquid kind administered in drops. I put them all in one cup of water. He said it tasted pretty bad. Guess I'll put them in orange juice next time. I am going to add in the RNA supplements in a week, and then he will be taking all of them.

In the meantime, I am taking just the "vitamin" created by Dr. Amy. I am no longer hungry all the time. I think my methylation cycle has been messed up too, at least in the past 12 years.

Mike is gradually taking more of the Step One vitamins and so on. I am taking some of Dr. Amy's general "vitamin" as well, and am seeing an improvement in my number one health problem, high insulin resistance.

Meanwhile, I was poking around on Dr. Amy's discussion group Web site (www.holistichealth.com) and found a reference to a movie on RNA. Dr. Amy likes to recommend RNA as a short cut for her protocols. It's expensive though. This movie explains what RNA does.
http://www.pbs.org/wgbh/nova/sciencenow/3210/q-02.html
Check it out!

Mike is on his third day of easing into the "step 1" supplememnt regimen. These supplements are not tailored to a specific mutation, but are intended to help the methylation cycle and related cycles get moving, just generally. I am starting with the vitamin, six pills a day as directed, and some other vitamins such as D and E. After three days I am adding in something he has never had before, and waiting three days to add another, and so on. That way if he has a reaction to one of them we will have some idea which one is causing the problem. I am getting the supplement dosages from the yaskobuddies Web site, at this link:
http://home.comcast.net/~yaskobuddies/wsb/html/view.cgi-showresources.html-TopRes-3-2E-20Supplements.html

In fact, I am taking some of the vitamins too. I have a strong suspicion that Sam's mutation is my mutation, messing up my methylation cycle. In my case it is causing problems with insuulin resistance. As a result I have to be on a very-low-carb diet, or I get tired and muddle-headed. I have been taking a supplement made by Shaklee that helps my insulin resistance problem considerably. I looked at the ingredients; one is Taurine, which is one of the amino acids in these methylation-related cycles. So the Shaklee people are onto this too.