PLEASE READ--KPU major player in autism; our magic bullet!

Discuss autism diets and biomedical treatments of autism.

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Dani
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby Dani » Thu Sep 15, 2011 12:15 am

So I've been giving the supplements for the KPU and today we had feedback in my child's daily communication book which said it was the single best day she's had this year in school. She was cooperative, happy, engaged and interested. The school doesn't know there's a change in the supplements. I prefer not to tell them so that I can unbiased feedback from them.

If it's the new treatment, I'm so continuing with it.

We know the zinc/copper balance is an issue for us based on previous blood test results.
I didn't know how strong I could be until I had to be.

amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Thu Sep 15, 2011 11:33 am

ORAAT and Omamma,

I think the "chelate first" suggestion is from a different video than the one posted originally. I have not seen it yet, but want to.

I'd like to say that while a whole lot of the KPU info is from Klinghardt, there's also a whole body of research and testimonials out there that are not related to the autism or Lyme community. THere is nothing there that I see that talks about the metals dumping or regression; they only talk about good stuff. That makes me wonder whether it is such a huge problem after all, or if we are just more tuned into the regressions as biomed-ers than than the rest of the world is :). Years ago, we did the low oxalate diet in the very beginning when it was first being introduced into the autism community. There was talk about "dumps", but people didn't really know what that entailed. Well, my husband and I ended up sick in bed for several days, and under the weather for about two weeks after beginning the diet. We thought we'd caught a bug. It was only in retrospect, after working witht he diet for a long time that I recognized that what was REALLY going on was a massive oxalate dump. So, not that the metals dumping isn't real, but maybe we shouldn't be so concerned about it. Maybe just be on the lookout in case there is a regression, and then we'd know to back off for awhile.

Still great things here. My husband keeps commenting on how NORMAL my son is. He is growing like a weed, too, but not sure if that's the supplements or if it's just his age, though all three of my kids have gained some height in the last months since we began. But don't all things, including kids, grow better in the summer? :)
Last edited by amanda NC on Wed Dec 28, 2011 9:48 pm, edited 1 time in total.
Amanda, mom of 3

amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Mon Sep 19, 2011 5:01 pm

Bump for Tami....

But we are still seeing really, really good things! I"d like to say, though, that it has not lessened the need here yet for a gf/cf diet. All the great expressive language and engagement I am seeing pretty much goes away when we get much milk or wheat back in. Chelation is helping with that, though..
Amanda, mom of 3

Pearl1981
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby Pearl1981 » Mon Sep 19, 2011 5:21 pm

so good amanda I cant wait to start
Thank the Lord all your hard work eventually paid off and you found the Golden Egg! :D
Daughter 5y.o lost diagnosis - 100 rounds cutler. Aspergers/ autism @2yrs

amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Mon Sep 19, 2011 7:11 pm

Order the test here....

http://www.riordanclinic.org/mm5/mercha ... e_Code=BCL

No rx is needed. I am going to do this for my oldest, and then will do the others later, maybe. My hubby too!

I will try to listen again to klinghardt's directions for the test. They are different from what the lab says to do.
Last edited by amanda NC on Wed Dec 28, 2011 9:49 pm, edited 1 time in total.
Amanda, mom of 3

JeniB
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby JeniB » Mon Sep 19, 2011 7:15 pm

anyone else's kids getting reddish hair? I really feel it is copper finally coming out. Molybdenum is really helpful with this. AC talks a lot about using it with getting copper out. I feel better immediately with taking it. I use the bodybio liquid form of moly. What about the silica? Dani are you using it too? I have a silica here that I've been giving, mostly because of our teeth issue that I worried about. It's some type of easily absorbed silica, biosil I think?
Jen
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amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Mon Sep 19, 2011 9:09 pm

Hi JeniB,
I know you asked about the copper color in the hair, but I've got a little problem with that here--my kids are redheads :lol: So I'm wondering if maybe they're supposed to be brunettes, but we have REALLY BIG copper issues? :lol: Just kidding. But guess what--we lived in a home where two were born. We had the home re-plumbed under a class action lawsuit where the polybutylene pipes in those homes failed. Guess what we replaced them with? Yep--wonderful, high-quality copper! Brilliant. I can add that to my list of epic fails as a mother. :(

I am trying to figure out about this whole copper thing, though. Seems like it might be a piece for us. I am too busy right now to work through it, but wonder if maybe addressing it might make the KPU treatment go a bit easier.

We backed off the KPU for my two girls a bit, partly because we got busy and partly because I wanted to see if it was really making the difference it seemed to be. Well, big ol' backsliding for both; it's a keeper here. Interestingly, my oldest who has major pale skin, seemed to have her symptoms return worse than they originally were when we backed off treatment. Wonder what that means?

Omamma, any updates on you guys? STill seeing good stuff? And are you doing this for yourself? Still feeling there's a big mold link in here someplace.
Amanda, mom of 3

susiejay
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby susiejay » Mon Sep 19, 2011 9:50 pm

JeniB wrote:anyone else's kids getting reddish hair? I really feel it is copper finally coming out. Molybdenum is really helpful with this. AC talks a lot about using it with getting copper out. I feel better immediately with taking it. I use the bodybio liquid form of moly. What about the silica? Dani are you using it too? I have a silica here that I've been giving, mostly because of our teeth issue that I worried about. It's some type of easily absorbed silica, biosil I think?


I've been supplementing molybdenum (bodybio drops) and my son's hair does look slightly reddish however I'm a redhead and a couple of my other kids sometimes have a reddish tinge to their hair I've not thought much of it. Energy testing showed my boy badly needs moly so maybe it has something to do with copper. Getting a water filter isn't something I'd looked into yet but I probably should. We do have copper pipes but I thought that was pretty standard in most homes in the US.

Amy

Omamma
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby Omamma » Mon Sep 19, 2011 10:23 pm

Omamma, any updates on you guys? STill seeing good stuff? And are you doing this for yourself? Still feeling there's a big mold link in here someplace


I am beyond thrilled with what we are seeing here! I just got a note home from dd's teacher today commenting on how much easier it is to communicate with her. And it is so true! Communication is now 2-way instead of one-sided. We are seeing so much more "life" in her...giggling (not from yeast!!!), smiling, playing with her brother and neighbor kids!!!

I started her (NT) brother on this as well, and have seen improvements in him as well. He seems more confident, and more laid back...(a good thing.)

You know, it is funny. When we had our mold issues years ago, and I felt like I was dying, unable to be helped by conventional medicine, I started researching natural health. By far the biggest improvement in my health was when I added B vitamins and magnesium. My B vitamin has a moderate zinc doseage in it. I guess minus the EPO, you could say I have been doing the protocol for a long time not knowing it. Back then my DH started the same things I was on, and the changes in him were AMAZING. He was even diagnosed as bipolar at one point after the mold, (which I think may have been a mis-diagnosis). Starting these supplements have been miraculous for him. He is so much more laid back, easy-going. His sleep is SO MUCH better, and he dreams now...which he said he rarely did. I know of all of us, he and my dd should be tested, but I'll never talk him into stopping those supplements, even just for 2 weeks!

So glad to hear your update Amanda! Hope the improvements keep coming!!!

JenB...can't say I've noticed any hair changes yet, but I wonder how long that would take to start changing. I just ordered a book on zinc/copper that you mentioned in another thread. I am sure that may be an issue for us.

Pearl1981
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby Pearl1981 » Tue Sep 20, 2011 7:05 am

moly is in the core mineral supplement and is part of the KPU treatment :)
Daughter 5y.o lost diagnosis - 100 rounds cutler. Aspergers/ autism @2yrs

TamiW
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby TamiW » Tue Sep 20, 2011 1:01 pm

Really interesting. And so glad you found a winning protocol! I think my son was tested for this at Pfeiffer. I need to check!
Tami

aisha
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby aisha » Thu Sep 22, 2011 1:01 pm

oh my gosh ,this is a lot of info. thanks amanda for posting. i had send you a pm as well. i`ve always had those white spots on my nails all my life. after reading this saw that 1 of my autistic kiddo has the spots too. i really wanna try this as you all know nothing in this whole wide world worked for my kiddos. amanda ,pearl or omamma please if you could give me exactly how much of each supp/minerals to give & r you giving it 1 or more time a day also what is the wt of your kiddos ? my younger one is 50-52 lbs . also we have reached the 30 rd mark with a/c.,if that helps.how soon did you guys see improvements ?

aisha
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby aisha » Thu Sep 22, 2011 1:29 pm

does this dr see pt in the us, any contact info ?

amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Thu Sep 22, 2011 3:56 pm

Hi Aisha,
Answered your pm before seeing this--my guy is about 110 lbs (age 14) and we do the minerals zinc, manganese, and biotin after breakfast as they hurt my guy's stomach a bit (but not bad). You are supposed to do the B6 at night; we are doing just 50 mg right now but will go higher. the B6 will have a significant diuretic effect, and can cause bedwetting; supposedly if you add in magnesium it will correct that, but we are having to get up in the night to use the bathroom when we take it. That stopped after we'd been taking it for about 2 weeks or so. The B6 will also cause dreaming and maybe nightmares at first as it is correcting sleep issues, or so they say. We slacked off on the B6 after being good with it for months and it was like starting from scratch! So we will keep on it this time.

I was just researching hair loss for my MIL. Low zinc causes this. Her hair was thick and healthy too, and she is getting bare spots from losing so much. Stress will cause you to dump zinc, so I guess it should be one of the first things to suspect if health starts to flag with stress.

This protocol works quickly! Like a few days! It is really helping my depression too! What a blessing.
Amanda, mom of 3

JeniB
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby JeniB » Thu Sep 22, 2011 9:37 pm

Amanda, are you guys planning on going as high as he says with the zinc and other stuff? This part has me a bit freaked out. (I finally sat down today and watched the whole thing) He mentions using up to 200mg of DMSA every 3 hours for several days :shock: . This does not sound safe, imo. What are you all planning to do with the protocol? Maybe inch up to the high amount of zinc and just do AC? Supposedly the high zinc causes the metals to pour out. but, as a parent, how do you know if it's not doing damage during the crisis he talks about? Moving massive amounts of metals isn't something I want to try again, after our bad experience with OSR.

I still haven't found any great info on microsilica's ability to chelate without redistribution. I think it can be a bad situation if a kid dumps up to 2000mcg of mercury like he mentioned in the video. He had me at hello... until he got to that part of the presentation...why such massive amounts of chelator? he was also pretty vague on the amount of total recovery he's seen with this protocol. Yes, a kid could get better with this, but recovered, completely and safely without a 2 year setback from taking too much too fast, well, that I don't want. Do you know how many adults on the other forums did some serious damage chelating with cilantro? It added 2 years to their chelation schedule. I don't like monkeying around with my son's brain and mercury. This is just too much chelator, too fast, imo.
Jen
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amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Thu Sep 22, 2011 10:04 pm

.i just decided days ago to try the regimin for pyroluria and it seems to have helped a lot so far...i had discounted the info for a while but it kept coming up...so i upped my zinc, p5p, and epo and felt better within 3 days...


for those unfamiliar with the subject here's an old posting from hasty pastry:

Vitamin Success and Urine Testing

I haven't had much time to post since the new forum was established, so the newbies won't know me, but the oldtimers will. I am a Ph.D. biochemist by profession and on the faculty of a large medical school. I am summarizing many pasts posts but most important, I want to mention that I just learned that one does not need a physician to order the test for pyroluria. This is something you can do on your own. For those of you who may be skeptical of vitamin treatments, I have addressed this concern at the bottom of the post.

My son was once diagnosed with TS, ADHD, OCD, ODD, episodic rage tantrums, mood swings (possibly bipolar), learning disabilities (visual processing, dysgraphia, Executive Dysfunction). After eight years of seeking solutions to his problems, he is now completely normal and getting all A's in school- completely on his own, without tutorial help. He is especially good in math, whereas I heard for years "I hate math" on a nightly basis. He has been emotionally stable and episode-free for about a year now. He had two problems. The first was a tapeworm, picked up when we lived in Europe and this took six years to get properly diagnosed and eliminated. The second problem was a genetic disorder in the family, known in the alternative medical literature as "pyroluria". Individuals with pyroluria have an abnormal pyrrole compound in their urine. This compound is believed to created deficiencies in either B6 and/or zinc. The symptoms depend upon the genetic makeup of the individual and wax/wane with dietary intake. Although the symptoms are different for each individual, I have noticed that individuals who easily experience side effects to medications, are more likely to have pyroluria because pyroluria can definitely adversely affect the function of cytochrome P450s, the proteins which clear medications and toxins from the body. It is now believed that pyroluria occurs in individuals under oxidative stress, caused by poor genetics (such as familial alcoholism) and/or local environmental problems. Conventional medicine does not recognize pyroluria as a disorder. Conventional medicine does not refute this disorder either. It simply ignores it. The disorder has been known for over 40 years and the abnormal urine marker if found in 20% bipolar, 30% ADHD, 40% alcoholics, 50% autistic, 60% schizophrenics, and 70% Down's Syndrome. No one has followed the percentage in TS, but I suspect that it is at least 30% if not more.
The newer treatments for pyroluria include about 200 mg of P5P, 50 to 150 mg of zinc, Mg, Mn, antioxidants (particularly reduced glutathione), and primrose oil. The value of each supplement that is needed depends upon the level of the abnormal pyrrole in the urine.

Testing for pyroluria is extremely easy and inexpensive. The best place to get the urine testing done is the Bio Center Lab in Wichita, Kansas (Phone: 316-684-7784 or 1-800-494-7785). Here is their web site for more information: http://brightspot.org/biocenter. This lab is considered to be the gold standard for pyroluria testing. You must call between Monday and Thursday and ask that a urine test kit for pyroluria be shipped to your home. I prefer that the urine sample be collected first thing in the morning before eating, in order to make a valid comparison, if necessary, with other tests. Then you mix the urine with the preservative in the tube and I prefer to cover the tube with aluminum foil to protect against light. You must then freeze the specimen as well as the shipping ice packs (if you haven't already frozen them) and then ship later in the day by overnight express. I use DHL-Airborne which has special packs for lab specimens. The test costs $36 and shipping from my home now costs about $34. I am happy to say that I was mistaken in past posts. YOU DO NOT NEED TO HAVE A PHYSCIAN ORDER THE TEST. You can order the test yourself. Medical insurance will probably not cover the cost of the test. A level below 10 in considerable normal. Treatment should be considered for a level between 10 and 20 to avoid waxing and waning symptoms. A level about 20 is definitely abnormal and should be treated.

My son has received proper pyroluria treatment for about a year and he has been completely normal since his urinary pyrrole level fell from 60 to below 10 over a 4 month period corresponding to the treatment. Now that I see what normal is for him, I am shocked to realize how mentally sick he really was before. I have notified both family and friends whom I suspect to have pyroluria and many are testing positive, getting the treatment and returning to complete normalacy. I urge everyone who posts here to consider pyroluria as a potential diagnosis, but it surely won't affect everyone who posts to this site. However, it is simple and relatively inexpensive to rule out as one of the problems. If you or your child does have pyroluria, consider yourself lucky because the treatment works. You can learn more about pyroluria from

http://drkaslow.com/html/pyroluria.html

Because B6 and zinc are used by over 200 proteins in the body, the symptoms of pyroluria vary from individual to individual, depending upon their genetic make-up. Very often pyroluria is marked by mood swings, anxiety, sensitivity to medications, poor appetite, carb cravings, etc. The web site listed above gives a bit of a description of pyroluria, but please keep in mind that a person could still have the condition without having any of the symptoms listed.

As for the failure of vitamins to work, I have learned a good deal about vitamins through my son's ordeal. I now realize that vitamins will be effective in about 80% of the cases of TS and probably ADHD. How can you tell if you or your child fall into the 20% unsuccsessful group or the 80% successful group. One criterion is whether the symptoms wax and wane. If the symptoms are constantly there, day and night, then vitamins might help, but vitamins might not help because there is an underlying genetic mutation in one or more genes. If the symptoms are NOT present all of the time, then the right combination of vitamins will most likely help. HOWEVER, to get the right supplement regimen for the individual, one needs to get the correct nutritional testing done. When people say that vitamins have not worked, ask them if they have had the proper clinical testing done and 99% of the time, you will find out that they have not had the testing done and are trying to "experiment" with vitamins on their own. If this is the case, don't blame the supplements for not working. They are using the wrong approach to finding a solution to the problem. Please keep in mind that conventional, traditional medicine does not train physicians to do the proper vitamin testing during medical school. You need to find a physician, usually an alternative medical physician, who has had about a year of extra medical trainging specializing in supplements, to do the tests and to know how to interpret the tests. These physicians are hard to find, but you can start with ACAM.org. Be sure to interview the staff or physician about their training and experience in nutritional supplementation before agreeing to tests. If you can't find someone locally, then the better thing to do is to contact a regional center for vitamin testing, that is, if you can afford it. I highly recommend the Pfeiffer Treatment Center
( http://www.hriptc.org/). They have many years of experience treating all kinds of disorders with supplementation. So they know what tests to order, depending upon the symptoms. I think it is a 2-3 month wait for an appointment and you need to fill out forms in advance. All of this is described on their web site. They also have traveling clinics, so it may not be necessary to go to Illinois. If I had followed my own advice initiallly, then I would have saved my family from suffering for over eight years. I just didn't know how or where to find appropriate help.

Please keep in mind that when a child needs vitamin supplementation, it does not mean that they are eating a poor diet. There are many medical reasons why a child could be deficient in all vitamins (intestinal infections, malabsorption disorders, genetic disorders) or deficient in a critical subset of nutrients (pyroluria, allergies, viral infections, bacterial infections, stress, long-term medications such as pyschotropics, genetic disorders), etc. Once a supplement plan works, you will really need to spend the time to find out why the child was vitamin deficient in the first place, to make sure you can eliminate allergies, intestinal parasites or infections. There isn't much that can be done if the true nature is genetic, but a treatment, even if it is for life, is better than no treatment at all.

Good luck to everyone.

Amanda, mom of 3

JeniB
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby JeniB » Thu Sep 22, 2011 10:41 pm

Thanks for the post Amanda. what she is saying sounds reasonable to me. so, it looks like no chelation, just vitamin supplementation for him? Does the vitamin testing tell you how much of each to give?

The newer treatments for pyroluria include about 200 mg of P5P, 50 to 150 mg of zinc, Mg, Mn, antioxidants (particularly reduced glutathione), and primrose oil. The value of each supplement that is needed depends upon the level of the abnormal pyrrole in the urine.
-like the Mg, Mn? I have to say, I'm curious about getting the test done. Have you done it yet? Does she still have to give her son these supplements for life? or did it correct something?
Jen
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expo
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby expo » Thu Sep 22, 2011 10:47 pm

Amanda, I had the same quesions too.

Are these supplements to be taken forever? Is there a chance that it could correct itself?

Omamma
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby Omamma » Fri Sep 23, 2011 8:06 am

If I recall right, being genetic in nature, this is something that will need supplemented for life. If this is indeed what my hubby has been treating, I can guarantee you will have to rip these supplements out of his cold, dead hands! He will definitely supplement for life, because this has been gold for him!!!

On all of the KPU research I have done, Dr. Klinghardt is the only one I recall mentioning chelation with the protocol. I don't know if that is singular to him, or if others support that theory as well.

amanda NC
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby amanda NC » Fri Sep 23, 2011 8:41 am

Sorry--posted the quote, and then my computer gave out. I posted that because the stuff this guy says is what the REST of the articles I've read about pyroluria, EXCEPT for Klinghardt, say to do--just like Omamma says. Klinghardt is the only one who does the really-high-dose minerals, the chelation, the bunch of additional stuff. It seems most all the other directives I've come across do what this guy says here (is it a guy or a woman? Not sure!)

At Pfieffer Treatment Center, they evidently do thorough testing and dose minerals, etc. accordingly. More recent articles suggest splitting the B6 dose between regular B6 and P5P. Most add molyb. Most also do a more rounded addition of the B vitamins, upping them all, and not just the B6.

I will search around a bit for more examples of doses. We are doing both AC chelation and the type of dosing that this guy says here. Yep, they think it's for life, but if this is indeed caused by mold or Lyme or metals then IMO chelation and other "biomed" interventions might fix the body enough that the supplement support isn't necessary long-term. BUT--while they say supplements are for life, they do not mean the very high doses; apparently, after the zinc levels are stabilized people move back to a more normal dose of the minerals for maintenance. So it would be pretty much taking a daily multi forever, which I'd be quite happy to do!!

I have just started taking the GNC brand of Women's Ultra Mega 50 Plus vitamins, and am giving this to my family, as it seems to have a good rounded blend of everything necessary to the protocol, with the addition of more zinc and magnesium seperately. Heck of a lot cheaper than the CORE mineral supplement that Klinghardt sells! Can't afford it!

A woman who sees Klinghardt says that he originally used AC chelation but couldn't get the patients to do the protocol correctly. So he now does this other stuff.

And JeniB, I agree. I don't like the crisis he seems to force with the high doses of minerals, and then trying to clean it all up with chelators. Something not right there if his kids get that sick, and are dumping that much. The guy in the above article talks about progress over a year's time--I'm betting that the lower doses of the zinc, etc. will more gently normalize the system. Low and slow! Learned that the hard way! And again, we are continuing the AC for my guy and soon for the rest of us also.

Oh, a little off topic....people tell me that I look really good, as in younger! :) So maybe this is "showing" on the outside as well as making me feel better on the inside!
Amanda, mom of 3


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