Thursday, July 3, 2008
CBS excess ammonia problem still there
I sent a urine toxic elements test to Amy Yasko--had bought it last year. She looked it over and his supplements and suggested increasing his methyl B-12 dosage greatly. This is to get the methylation cycle revved up for detox.
So I doubled his methyl B-12 dosage, which is a small one, just 1000 mcg or 1 gram. On 2 grams he became very cranky and argumentative. This lasted a week. Finally I backed off. I was hoping he would "get used to it," but he didn't. I am thinking the methylation cycle is producing too much ammonia because of his CBS mutations, discussed much earlier in this blog.
So, the detox will have to be done some other way. In fact we are doing Round 3 of our Andrew Hall Cutler chelation starting this morning. I am thinking I need to do this every weekend instead of just every second or third weekend. It is going to take forever otherwise. I am not looking forward to being awake every three hours at night, every weekend. But oh, well. At least, the last time I did it I was finally able to sleep the last night of the chelation. (I wonder if the chelator, alpha lipoic acid, tends to keep me awake somehow.) I have decided to drop the chelation for myself but continue it for the kids if the insomnia continues. After all, I don't have symptoms of mercury poisoning, although the first chelation did show that I must have mercury issues.
So I doubled his methyl B-12 dosage, which is a small one, just 1000 mcg or 1 gram. On 2 grams he became very cranky and argumentative. This lasted a week. Finally I backed off. I was hoping he would "get used to it," but he didn't. I am thinking the methylation cycle is producing too much ammonia because of his CBS mutations, discussed much earlier in this blog.
So, the detox will have to be done some other way. In fact we are doing Round 3 of our Andrew Hall Cutler chelation starting this morning. I am thinking I need to do this every weekend instead of just every second or third weekend. It is going to take forever otherwise. I am not looking forward to being awake every three hours at night, every weekend. But oh, well. At least, the last time I did it I was finally able to sleep the last night of the chelation. (I wonder if the chelator, alpha lipoic acid, tends to keep me awake somehow.) I have decided to drop the chelation for myself but continue it for the kids if the insomnia continues. After all, I don't have symptoms of mercury poisoning, although the first chelation did show that I must have mercury issues.
Tuesday, June 24, 2008
Chelation and Gluten-Free, Casein-Free Diet
I see it has been a month since I posted last. Oops!
Mike is doing pretty well but is not "recovered." He still has plenty of very ornery moments, and can't understand another's point of view. We have tweaked the supplements somewhat, but that doesn't seem to help in a big way.
According to Dr. Kenneth Bock, Defeat Autism Now (DAN) doctor, we also need to be pursuing chelation to get rid of mercury, and trying a gluten-free, casein-free diet. These have helped a majority of the autistic kids who have been put on them. So we have done two rounds of mild chelation with alpha lipoic acid so far, per the protocol of Andrew Hall Cutler. Since this is such a mild protocol, we don't expect to see results for a while. Just keep doing it every two weeks for a year or something like that. (It involves two nights and three days of taking an ALA dose every three hours, around the clock.) So we will persevere and see what happens.
As for the gluten-free, casein-free diet, I have been reluctant to bring it up. My husband is such a particular eater that I have never brought it up before, although I knew it might help. I did suggest it to Mike's older sister Shannon, who put herself on it about three weeks ago and is feeling much more clear-headed. (She has mild Asperger's.)
I brought it up to Mike a couple of nights ago and he basically said "no way." He is not interested in forgoing cookies etc. So I have to either 1. put the whole household on a GFCF diet while they are at home, or 2. talk him into it somehow. I will try to talk him into it first.
The GFCF diet is no wheat, oats or rye, and also no milk products of any kind. So, no pizza, no cake or normal bread. The best substitute is a Chinese/Japanese diet, which is what Shannon is eating. Hopefully we can get Mike to consider this. In fact, please pray about it for me!
Mike is doing pretty well but is not "recovered." He still has plenty of very ornery moments, and can't understand another's point of view. We have tweaked the supplements somewhat, but that doesn't seem to help in a big way.
According to Dr. Kenneth Bock, Defeat Autism Now (DAN) doctor, we also need to be pursuing chelation to get rid of mercury, and trying a gluten-free, casein-free diet. These have helped a majority of the autistic kids who have been put on them. So we have done two rounds of mild chelation with alpha lipoic acid so far, per the protocol of Andrew Hall Cutler. Since this is such a mild protocol, we don't expect to see results for a while. Just keep doing it every two weeks for a year or something like that. (It involves two nights and three days of taking an ALA dose every three hours, around the clock.) So we will persevere and see what happens.
As for the gluten-free, casein-free diet, I have been reluctant to bring it up. My husband is such a particular eater that I have never brought it up before, although I knew it might help. I did suggest it to Mike's older sister Shannon, who put herself on it about three weeks ago and is feeling much more clear-headed. (She has mild Asperger's.)
I brought it up to Mike a couple of nights ago and he basically said "no way." He is not interested in forgoing cookies etc. So I have to either 1. put the whole household on a GFCF diet while they are at home, or 2. talk him into it somehow. I will try to talk him into it first.
The GFCF diet is no wheat, oats or rye, and also no milk products of any kind. So, no pizza, no cake or normal bread. The best substitute is a Chinese/Japanese diet, which is what Shannon is eating. Hopefully we can get Mike to consider this. In fact, please pray about it for me!
Sunday, May 25, 2008
The next relatively simple, inexpensive step: chelating the mercury
I am now reading a book that everyone with babies or autistic kids should read: Healing the New Childhood Epidemics: Autism, ADHD, Athsma and Allergies by Kenneth Bock, MD. He is what is called a DAN doctor, a doctor who helped invent and also administers the DAN (Defeat Autism Now) protocol. He describes a number of total recoveries, mostly of children who began to have serious problems soon after vaccinations.
Mike is doing pretty well, but he isn't a different guy, the way "recovered" kids are. What am I missing?
Bock's healing program involves:
In Mike's case, we have improved his nutrition and determined that he doesn't have gut issues that autistics often have. His immune system works OK. That leaves mercury toxicity as the probable remaining culprit. The chiropractor thinks he has no mercury toxicity problem. But she isn't an expert on autism.
His hair analysis showed NO level of mercury detectable in his hair. The guys on Andy Cutler's email list think that may be a danger sign: the body is holding on to the mercury. What happens is this: mercury absorbed early ends up in the brain, where it is locked in. Only a compound called ALA, alpha lipoic acid, can get it out. (There is another widely used chelator, DMSA, which also does a good job but doesn't get into the brain.)
It turns out that ALA is very benign, a good antioxidant like Vitamin C that is readily available in the health food store. So I got some. I found a protocol on the Cutler list, and we're trying it now, me and all the kids. I figure their mercury came in utero from my fillings, and after birth in their shots. My siblings and I had in-uero exposure too from mercury in our mother's mouth--perhaps that is why I have an autistic brother. I have had plenty of health problems over the years. Maybe mercury in the brain is a part of this picture?
Here's the protocol:
Do not do this if you have "silver amalgam" fillings, which are 50 percent mercury. Mine were taken out about a year ago. The kids don't have any.
Take ALA every three hours, day and night, for three days. Then rest for at least four days. Then repeat. Beware of possible yeast infections in the gut, because if ALA finds toxins it will bring them out of the body through the colon, and yeast like to munch on this stuff. So we are taking grapefruit seed extract with meals during the cleanse to keep the yeast down.
As for dosage, ALA is supposed to be 1/8 to 1/2 mg of ALA per pound of body weight, per dose. I found 100-mg tablets of ALA in the health food store and am cutting them in half to use as a dose for all of us.
If there is mercury being stirred up and excreted, there are typically some behavior changes. We'll see!
Mike is doing pretty well, but he isn't a different guy, the way "recovered" kids are. What am I missing?
Bock's healing program involves:
- eliminating further exposure to toxins
- flushing existing toxins out of the system
- healing the damage that the toxins have triggered
- restoring proper function of the nervous system, the immune system, and the gastrointestinal system.
In Mike's case, we have improved his nutrition and determined that he doesn't have gut issues that autistics often have. His immune system works OK. That leaves mercury toxicity as the probable remaining culprit. The chiropractor thinks he has no mercury toxicity problem. But she isn't an expert on autism.
His hair analysis showed NO level of mercury detectable in his hair. The guys on Andy Cutler's email list think that may be a danger sign: the body is holding on to the mercury. What happens is this: mercury absorbed early ends up in the brain, where it is locked in. Only a compound called ALA, alpha lipoic acid, can get it out. (There is another widely used chelator, DMSA, which also does a good job but doesn't get into the brain.)
It turns out that ALA is very benign, a good antioxidant like Vitamin C that is readily available in the health food store. So I got some. I found a protocol on the Cutler list, and we're trying it now, me and all the kids. I figure their mercury came in utero from my fillings, and after birth in their shots. My siblings and I had in-uero exposure too from mercury in our mother's mouth--perhaps that is why I have an autistic brother. I have had plenty of health problems over the years. Maybe mercury in the brain is a part of this picture?
Here's the protocol:
Do not do this if you have "silver amalgam" fillings, which are 50 percent mercury. Mine were taken out about a year ago. The kids don't have any.
Take ALA every three hours, day and night, for three days. Then rest for at least four days. Then repeat. Beware of possible yeast infections in the gut, because if ALA finds toxins it will bring them out of the body through the colon, and yeast like to munch on this stuff. So we are taking grapefruit seed extract with meals during the cleanse to keep the yeast down.
As for dosage, ALA is supposed to be 1/8 to 1/2 mg of ALA per pound of body weight, per dose. I found 100-mg tablets of ALA in the health food store and am cutting them in half to use as a dose for all of us.
If there is mercury being stirred up and excreted, there are typically some behavior changes. We'll see!
Thursday, May 22, 2008
Mercury?
I posted Mike's hair elements test results on the Mercury-Autism email group's site and asked for comment. The folks in this group are working on detoxing kids from mercury, and getting great results in improving autism.
They said that Mike's zero level of mercury is odd and may indicate in itself that he does have a mercury problem--nothing at all is being excreted. The only way to find out would be to give him chelators which would cause symptoms if they are in fact moving mercury, and otherwise not. So I will look into using ALA, the chelator favored on this list.
They also looked at the ratios of one element to another and said he may have a thyroid problem, and he isn't producing adrenaline. I am getting his thyroid and other general blood work checked this coming week. The idea that he has low adrenaline is odd because he is getting direct supplementation of bovine adrenaline, a supplement called Ora-Adren that was originally one of Yasko's recommendations.
Meanwhile, he is behaving pretty well except at dinner time. Then he gets manic. Dinner isn't too pleasant these days.
They said that Mike's zero level of mercury is odd and may indicate in itself that he does have a mercury problem--nothing at all is being excreted. The only way to find out would be to give him chelators which would cause symptoms if they are in fact moving mercury, and otherwise not. So I will look into using ALA, the chelator favored on this list.
They also looked at the ratios of one element to another and said he may have a thyroid problem, and he isn't producing adrenaline. I am getting his thyroid and other general blood work checked this coming week. The idea that he has low adrenaline is odd because he is getting direct supplementation of bovine adrenaline, a supplement called Ora-Adren that was originally one of Yasko's recommendations.
Meanwhile, he is behaving pretty well except at dinner time. Then he gets manic. Dinner isn't too pleasant these days.
Wednesday, May 14, 2008
Well, Hmm
Mike has been doing extremely well for over two weeks. But then last night he had an episode right after dinner where he was acting squirrelly again. Sigh. Perhaps this is the "detox" that comes from being on cod liver oil for a while. Right now he is doing fine. We'll see!!! I am SO hoping for a new kid! But I must say, others who know him from church are saying they see a big change in him, over the past year.
Thursday, May 8, 2008
Hair test results came
Mike's hair elements test results just arrived. They show no readable amount of mercury in his hair. The highest toxic element is aluminum at 6.5 micrograms per gram, under the reference range of 8.
But we can't rejoice just yet. It is quite possible for a person to have plenty of mercury stored away in tissues such as liver and brain, but not have it excreted at all in hair or blood.
Andy Cutler's protocol gives you another way to read the test. It looks for abnormal patterns of element transport in the system, which is an effect of mercury poisoning. So it is looking indirectly for the presence of mercury using statistical analysis. I went to the posting at http://home.earthlink.net/~moriam/HOW_TO_hair_test.html#get_hair_test and followed the steps there to see whether Mike may have abnormal element transport.
His test does not raise any of the statistical red flags. So I guess we can breathe a sigh of relief. Take a look yourself at http://www.phylliswheeler.com/CuringAutismBlog/elementshairtest0508.pdf
But we can't rejoice just yet. It is quite possible for a person to have plenty of mercury stored away in tissues such as liver and brain, but not have it excreted at all in hair or blood.
Andy Cutler's protocol gives you another way to read the test. It looks for abnormal patterns of element transport in the system, which is an effect of mercury poisoning. So it is looking indirectly for the presence of mercury using statistical analysis. I went to the posting at http://home.earthlink.net/~moriam/HOW_TO_hair_test.html#get_hair_test and followed the steps there to see whether Mike may have abnormal element transport.
His test does not raise any of the statistical red flags. So I guess we can breathe a sigh of relief. Take a look yourself at http://www.phylliswheeler.com/CuringAutismBlog/elementshairtest0508.pdf
What's Next?
My peer advisor on this is cautioning that Mike may be in for a period of detox, as his body adjusts to the cod liver oil and starts to get rid of toxins. It may start making too much ammonia, since he has the CBS mutation as determined by Yasko's test.
Last night he got angry and slammed open the fragile sliding door of our van. Now the door is busted. :(
Hope we aren't really in for it.
Here's what my pper advisor, who spends a lot of time researching this, is proposing for dealing with excess ammonia:
* lemonade made with filtered water - lemons - and xylitol (5 carbon sugar)
* carrots
* beets
*dandelion root and dandelion leaves/plant - dandelion tea
* ora-liv (dessicated liver)
* apples - apple sauce
* baking soda and baking soda baths
* carnitine - if one doesn't have trouble with methyl donors
* jerusalem artichokeo calcium d-glucarate
* magnesium (and zinc to enhance absorption)' upwards of 200 mg/dayaccording to studies: the enzyme that detoxifies ammonia requires magnesium.BTW, Tri-mag, 2 capsules, gives that much and it has AKA (see below) in it too
* molybdenumo bh4 in royal jelly - bio organ - bio thyro
* ammonia rna
* yucca
* curcumin if no trouble with methyl donors
* milk thistle - even though it has sulfur. The silymarin is the only thing I know that can regenerate liver cells. The more liver cells, the more power to process ammonia down the road
* cranberry - TACA now talks about it helping with phenols
* larch arabinosegalactan - ARA-6 aka arabinexo aspartate and glutamine (pears are a natural source of aspartates)
* butyrate (as in butter!)
* sodium benzoate
* ammonul (drug the doctors use in hyperammonemia)
* AKA - alpha-ketoglutarates.
Stay away from all things hard to digest by liver: phenols - dairy - protein- saturated fats - artificials - preservatives - drugs - caffeine. The diet called "Sara's Diet" is extremely helpful in giving the liver the break it needs for behaviours to stop quickly. Some people even report eye and hair colour changes in 3 weeks, vomiting and diarrhea stopping after 1 day, etc.
Last night he got angry and slammed open the fragile sliding door of our van. Now the door is busted. :(
Hope we aren't really in for it.
Here's what my pper advisor, who spends a lot of time researching this, is proposing for dealing with excess ammonia:
* lemonade made with filtered water - lemons - and xylitol (5 carbon sugar)
* carrots
* beets
*dandelion root and dandelion leaves/plant - dandelion tea
* ora-liv (dessicated liver)
* apples - apple sauce
* baking soda and baking soda baths
* carnitine - if one doesn't have trouble with methyl donors
* jerusalem artichokeo calcium d-glucarate
* magnesium (and zinc to enhance absorption)' upwards of 200 mg/dayaccording to studies: the enzyme that detoxifies ammonia requires magnesium.BTW, Tri-mag, 2 capsules, gives that much and it has AKA (see below) in it too
* molybdenumo bh4 in royal jelly - bio organ - bio thyro
* ammonia rna
* yucca
* curcumin if no trouble with methyl donors
* milk thistle - even though it has sulfur. The silymarin is the only thing I know that can regenerate liver cells. The more liver cells, the more power to process ammonia down the road
* cranberry - TACA now talks about it helping with phenols
* larch arabinosegalactan - ARA-6 aka arabinexo aspartate and glutamine (pears are a natural source of aspartates)
* butyrate (as in butter!)
* sodium benzoate
* ammonul (drug the doctors use in hyperammonemia)
* AKA - alpha-ketoglutarates.
Stay away from all things hard to digest by liver: phenols - dairy - protein- saturated fats - artificials - preservatives - drugs - caffeine. The diet called "Sara's Diet" is extremely helpful in giving the liver the break it needs for behaviours to stop quickly. Some people even report eye and hair colour changes in 3 weeks, vomiting and diarrhea stopping after 1 day, etc.
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This blog describes how we started out on the protocol by Dr. Amy Yasko, who many say has cured or improved children with autism using a genetic-based nutrition therapy.