kim Posted January 10, 2006 Report Posted January 10, 2006 This contains tons of info. on supplements and things discussed here often. Also, page 27? gives some helpful information on values measured on the Great Plains OAT I believe. Not many of the values measured on the Metametrix OAT test were discussed. Lots of yeast/bacterial, dysbiosis, gut issues covered. http://puterakembara.org/rm/Dr_Jepson.pdf Another very informative paper http://www.autismwebsite.com/ari/dan/heavymetals.pdf I have recently started culturelle (probiotic) with the boys and am considering restarting the Houston enzymes in hopes of better digestion/less immune response to foods not being tolerated well, only adding the NoFenol this time to aid in yeast treatment, along with the culturelle. Kim
Claire Posted January 13, 2006 Report Posted January 13, 2006 Thanks Kim, I noticed a section on MT promotion in the paper you linked to (I pasted in the excerpt below). This is exactly our current target with our son via Pfeiffer's MT promotion (MT=Metallothionein). We are doing it simultaneously. I feel zero difference after a week. Also, we just got the recent hair results back. The one thing that was too high was molybdenum--something he had been low in (and is supposed to help with yeast control) so we were supplementing at 300 mcg/day. Unfortunately it is compounded in his vitamins, which I just ordered a new 4 month supply of. Oh well, we can give them once a week for a while. He was low in magnesium, and we had cut back because the last hair test showed him high--now I am convinced it is just because he was taking the magnesium salt baths when we took the test last. So we are adding magnesium. This supplementation does require monitoring (boy do I sound like a broken record!!). His metals (mercury and lead), which showed high in the past were quite low--but it could be that without the same antioxidant supplementation (since the ala and cysteine caused yeast issues) he just is not excreting it. (He still shows lead in his blood, not high, but Pfeiffer says it just shouldn't be there, so we know it is there.) His hair still shows high in uranium (always high--in 4 different tests) and tin. His total toxis representation went from off the charts high to within normal range, but again, we aren't doing the things that encouraged excretion anymore--we have just been waiting for MT promotion to begin. It will be interesting to see if the MT promotion raises his mercury and lead l excretion in 3 months. Claire From Kim's link above... Metallothionein dysfunction This hypothesis was proposed by William Walsh, PhD, who heads the Pfeiffer Research Center in Illinois. He took extensive biochemical analyses of over 500 autistic patients that are treated at his clinic and discovered that almost universally, these children have abnormal copper/zinc ratios with high body copper and low body zinc. Extrapolating backwards, he discovered that the body’s control mechanism for copper and zinc is a function of a family of proteins called metallothionein (MT). Other functions of MT in the body include development of brain neurons, detoxification of heavy metals, maturation of the GI tract, anti-oxidation, boosting immune function and delivery of zinc to cells. MT dysfunction would result, then, in many of the issues that we see with autistic children such as the leaky gut syndrome, incomplete breakdown of casein/gluten protein by zinc dependent enzymes, disrupted ability to combat yeast, reduced production of stomach acid and impaired stimulation of the pancreas by secretin. It would also lead to inability to clear the body of heavy metals, a disordered immune system and ultimately to the neurological changes seen in autism. It would also explain the male sex predominance (4:1) seen in autism because MT synthesis is enhanced by estrogen and progesterone. MT dysfunction could be caused by a genetic MT defect, a genetic disorder that disables MT, or an environmental insult that disables MT. Theoretically, if we could find a way to detect the MT abnormality early on, autism could be prevented through avoiding environmental insults and supplementing with MT promotional agents (zinc, glutathione, N-acetyl cysteine, selenium, pyridoxal-5-phosphate, vitamins A,C,D,E, others.)
kim Posted January 13, 2006 Author Report Posted January 13, 2006 Claire, Sorry about your compounded vitamin, but it sounds like your making progress after many months of preparing for this. I'll really be interested to see what what results you see with the MT promotion. I read recently where one of the DAN's said basically what Pfeiffer is, that mercury may bind to testosterone and hang on, where it is not excreted as easily as in females. If the girly hormones help this process, it makes sense. I think it was Daniel who posted Dr. Walsh's chart that listed hairy people as being either over/under methylators where the hormone factor is probably what is considered. I think any parent or person with a neuro disorder, should have the zinc copper test done as a first line test, and this comes from no one with any great doc's or much testing, but it sure appears that this is a MAJOR player in this whole thing or maybe a major clue at the starting point, would be a better way to put it, and ANY Dr. should be able to order for you. I really wondered when Momonamission was giving her son the carnosine, if that wasn't part of the problem when it stopped working, a zinc/copper problem (some links on that thread) I had posted a question to you on the Chelation thread with Carolyn. Don't know if you missed it or just didn't have time to respond, but I would really like to know if you have had or plan to do the Direct lab/metametrix oat /yeast or if you will stick with Great Plains? Also, have you heard anyone suggest that yeast NOT be treated?????? I'm wondering how much magnesium you were supplementing with when your test results came back high. Is it possible to overload when only supplementing with say 200 to 500 mgs? Thanks for the update, and I hate to ask too many questions of you, but I'm wondering what you have "started with" regarding the MT promotion. Kim
Andy Posted January 13, 2006 Report Posted January 13, 2006 Hi Kim and Claire, My son is doing wonderful again except for an occassional eye twitch which to us is nothing. We are considering stopping the DMPS IV treatments and DMSA supposotories. We are awaiting for the blood and urine results to come in. The main thing that I wish to state is that we have been using Culturelle, two times a day for close to three months along with Nystatin for 19 days now. One of the reasons why we were doing the chelation was based upon the theory that if you remove the mercury you could heal the gut. Our doctor gave us the option that if the results show no more mercury if we should add another substance to reach into the deep tissues and pass thru the brain barrier and pull from there as well We are not happy with going to pull anything from the brain for we have our concerns and since he is doing so well we do not see why we should do anything else as long as he is where he is. Anyway sorry I have not been here to much recently but I did see a post on how many parents here have had success when i was lurking one day and it was so good to see.
kim Posted January 18, 2006 Author Report Posted January 18, 2006 Andy, That's such great news. I hope for everyone's sake, especially your son, the treatments you have done to date, are enough to have allowed your son to heal, and you can put the majority of this behind you. I pray your test results show good things. I have read so often about the metals keeping the gut, and yeast flaired and therefore not allowing the supplements to be absorbed. I'm so hoping this is not the case for my youngest son. His tics are minimal and for the most part always have been. It's the diet that's most concerning. I finally just decided to start the Culturelle, and I have started Houston enzymes again. I started with no fenol this time. Btwn the No fenol, which is supposed to weaken the outer structure of the yeast, and the probiotic, I feel like this would be a very gentle (and probably very slow) way to at least see if can make any small gains. Has your son's appetite improved through the chelation process? Giselle had posted that her DAN Dr. wanted her son to take something like 90 billion units a day of probiotic. The culturelle only has 10 billion per capsule, as I'm sure you're aware. Many on one of the autism lists, rotate probiotics, and I have been thinking of ordering one from Klaire, the Thera formula has 50 billion. I don't know how much die off we would be able to accomplish without a "killer" though. Thanks for posting your updates Andy. Your son's story is one of such hope and courage, and so important to all of us who are off the beaten path here. Kim
Andy Posted January 18, 2006 Report Posted January 18, 2006 Thanks Kim. My son is currently taking two Culturelle a day. My Dan doctor states that they are the only probiotic that he knows of that does not get burned up by the stomach acid and makes it into the small intestines. We have been giving supplements for over 5 years now and to tell you the truth I am pretty tired of the whole process never mind the costs involved. We are hoping that in a year he would not need the majority of supplements anymore but that is the hope and the tests will be the facts. My son is also taking three 1/8 spoons of nystatin a day with the culturelle. We try to give it 1/2 hr after my son eats to maximaze the results. Before starting the nystatin we were giving Culturelle for around three months to lessen the die off effect. We had a die off effect from the yeast with the Culturelle for around the first month and a half when I was giving it 3 times a day. We have had none with the nystatin being added so I am hoping that most of the yeast and fungus was killed and now we are doing clean up and maintance of the gut. As for getting out the Mercury we have did DMPS with glutathione IV's for 5 months and then stopped for two months then continued up to this point for three more months. That would be 8 months overall. We are awaiting the latest test results for if no mercury is being shown we will drop the DMPS and just leave the glutathione and continue those as the once a month IV's until we see a natural increase of my sons own glutahione levels. We were planning on stopping the twice a week DMSA supposortories at the end of Feburary for that would be a complete year of that and we never planned on doing it for longer then that. My son has had such drastic improvement since we started our then own path 5 years ago. The worse things they show on TV about TS was nothing compared to what we all went thru. I feared at the time that he was falling away from us into what is called delayed autism. You know where the kid is normal for the first 18 to 24 months of life then all of a sudden, boom. I get so angry at TV shows when I hear parents say "I didn't noticed anything was wrong to aroung 18 months". I feel like yelling, that is because most likely nothing was wrong in the first place. As many of the veteran posters know, I am a big believer that the vacination shots my son got caused his damage. Yes, he might have been predisposed but if it wasn't for being poisoned it would have never happened. Sorry for the long winded answer but basically my son started to eat more at the same time as the chelation process. He has a restricted diet in that he can not eat breads, anything with gulten, rice, soy, corn, cane sugar, or mushrooms but he can eat meat, chicken, vegs, beans, potatoes, fruits and nuts which is alot if you think about it and we have increased his beans and fruits since we seen no more die off from the probiotics and none with the nystatin.
Claire Posted January 19, 2006 Report Posted January 19, 2006 Kim and Andy, We use Klaire Labs Pro-5 which has 25 billion, and we do it twice a day. I hadn't heard that about Culturelle Andy. A friend who sees our same doctor says that he says to use a variety of probiotics because you just don't know which one works. I thought that was interesting. Right now we also are doing Threelac too, though I put it in a capsule cuz my son hates the taste. I am glad you are seeing success with Nystatin Andy. We saw it the first round then not at all with the next round. Kim, we did the no-fenol with the Nystatin and saw no improvement in yeast, what a bummer. That doesn't mean it doesn't work for others though. GSE (grape seed extract didn't help either). The Houston enzymes really have enabled my son to have wheat again. His test last summer showed him highly allergic, but as long as we limit the amount and use enzymes, he is fine. One day we gave him unlimited wheat (it was Christmas and you can imagine the pressure to do this) and clearly not enough enzymes and he could not get out of bed the next day. It was amazing--he couldn't eat anything either and I had to force a glass of water down over the course of the day. That was a first. So I really believe in the enzymes. Andy, I too am tired of supplements, but I do believe they are still necessary. I also know that sleep is still critical for him--moreso than some kids I think. Interesting comment you made on 'not noticing until 18 months"--good point! Kim, I literally just saw some of your questions right now as I was about to hit reply. I missed your questions on Carolyn's thread also. I will go through them now: Anyway, as I posted on the other thread, yes some doctors think the yeast, though bad, is needed to deal with the mercury/metals, so you really must get rid of the metals first. Although McCandless says the yeast then interferes with metals excretion so it must be managed too. I think it is terribly confusing myself and am stuck in that I don't know what to believe. So we are trying to bring the yeast down, but I would worry less if a little was left. Looking back, his yeast when we started 2 years ago was just above normal, and it was only when we started removing metals that it shot up. Metametrix OAT test. I already paid for it and received the kit from DirectLabs. I decided to wait to give it because I keep hearing that moving metals increases yeast issues (Andy Cutler says this too). So I want to wait until we have done MT promotion for 3 months and then I will give it to him. My ONLY concern with Metametrix is that past tests were Great Plains and thus there is a variable there that can affect comparisons. I know we did another test at two different companies and there methods were very different. I wasn't supplementing much magnesium when the results were high, I think it was 250 mg, which is less than the daily requirement I think--about the same as now when the results were low! I really think it was the fact that he was taking magnesium salt baths and washing and rinsing his hair in that water, with the residue. Another test showed him low in magnesium and that is why we supplemented in the first place. MT Promotion. Pfeiffer has a proprietary formula with some combo of amino acids, etc. (they don't list the amounts) that they require that their practioners or a doctor 'prescribe' to a pharmacy. Even though it is all composed of over the counter ingredients. It is one tiny 87 mg pill and he would take amino acid supplements far bigger, and sometimes I feel like it is a sugar pill and couldn't possibly make a difference. But then I remember how little DMSA/ALA and chelation supplements are and the risks and rewards. Anyway, if it works, it really uses up the zinc, so Pfeiffer is careful with it. So far no noticeable change on the MT promotion for either of us. It has been 1-2 weeks I think. And I agree with you so much on the zinc test being a first step! I would say it for kids with stunted growth also, especially after our son shot up after we began supplementation. Claire
kim Posted January 20, 2006 Author Report Posted January 20, 2006 Claire, That answer was worth waiting for, thanks. I sure will be anxious to hear of someone else's results on the OAT from metametrix. There's a lot of talk about probiotics being destroyed before they reach the gastro. tract. Klaires site claims that their's are able to survive stomach acid, and this is part of the reason I was wondering if they needed to be taken on an empty stomach. From the Klaire site-http://www.klaire.com/probioticleader2.htm Highest Quality Klaire uses only the purest and highest-quality probiotic ingredients available. All probiotics used in our formulations have been thoroughly researched, documented, and certified against currently available American Type Culture Collection (ATCC) strains. Highest efficacy Probiotics are living organisms that can be degraded by digestive acids and bile. InTactic™, the proprietary delivery technology used in our Ther-Biotic™ formulations, protects probiotic strains from stomach acid and delivers significantly more live organisms than unprotected probiotic formulations. Also, wanted to mention, thanks to our friends on the Autism bds. and all the great info they post/share, Dr. McCandless told everyone during biochat, if they ordered from Klaire to mention that they were patients of hers, and you will get a 20% discount. Is the die off you saw, the achy flu type reactions? rash? fever? Just wondering what to look for. So far nothing with youngest son with the no fenol and 1 culturelle per day. I will start giving two soon. Kim
Claire Posted January 21, 2006 Report Posted January 21, 2006 Hi Kim, Good to see that from Klaire. I just know that our DAN doctor recommended it and the company. I think Dr. Houston of Houston Labs worked at Klaire before he started his own company. I make sure they are packed in ice and shipped overnight when I order them from NEEDS. I never saw any reaction to no-fenol or pro-biotics. When I would take him from 1 to 2 2 capryllic acid capsules for yeast way back when, he would complain of nausea, which could have been die-off. I just stopped the capryllic acid when we didn't see improvement in the OAT test. For me, the Threelac caused a big rash initially (die-off most likely) that resolved itself. I really think it helped me. Good luck moving to the 2x a day for the yeast control. Claire
kim Posted January 21, 2006 Author Report Posted January 21, 2006 Claire and All, http://www.directlabs.com/testtypes.php#Dys The test I had done from Direct Labs was the Disbiosis Urine Marker #0097. At the time (5/05) the marker they were using for yeast was D Arabinitol. Now it appeares this test is using the markers of Tartarate and Citramalate. Cost $187.00 The Organic Acid Analysis #0091 is showing the same two markers, Tartarate and Citramalate. Cost $266.00 I'm assuming you ordered the Organic Acid Analysis? Dr. Shaw from Great Plains had been critical of Direct/Metametrix for their yeast marker in the past. I will call Monday. If this is a recent change without a logical explanation, I'm going to try to get them to redo the test I had done last May. Recent discussion on autism bd. had a thread of posts with people reporting good results with Candidase (I'm not fimiliar with this product) for yeast. A few had talked about good results with Threelac too. Kim
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