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

Discuss autism diets and biomedical treatments of autism.

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

Postby amanda NC » Thu Jul 21, 2011 8:29 pm

Hi all,

A couple of months ago, Omamma sent me information about KPU. My family has been following the protocol for about two months now, and I am seeing amazing things. I hesitate to say this, but I believe that this is our magic bullet.

KPU, also called HPU or pyroluria (pyrolluria, pyrolurria) is a condition that's been known about and studied since the 1950s. Dr. Dietrich Klinghardt, best known for his work with Lyme in autism, did a presentation about KPU at the Lyme In Autism conference in 2009. Watch it here:

http://www.google.com/search?q=youtube+ ... ent=safari

It's the video at the top of the page; 122 minutes on youtube.

KPU is a condition that causes ALL your zinc and B6, as well as manganese, omega 6 and biotin, to be dumped out in your urine. He talks at length about what this means in practice, and about all the body's functions that will be messed up by the lack of zinc.

Also, since your body is dumping out the zinc, its place is taken by other two valent metals, like mercury, cadmium, lead, etc. So you will, essentially, be putting metals where the zinc is supposed to be. A person without this condition, who has zinc in its proper places, will not retain metals in the same way.

He treats autistic kids--very successfully, with possible the highest number of recoveries in the "business--and he feels that KPU should be one of the primary things looked at when you have an autistic child. He feels that 80% or more of autistic kids have KPU, and 100% of people with Lyme.

KPU can be caused by Lyme, by trauma and can just be inherited. He feels that mold infection ALWAYS comes before Lyme infection; therefore, mold is probably a player in this also.

The fix is very simple. High doses of zinc, B6, manganese, EPO and biotin. The test for KPU is only $55 and can be ordered without a doctor. The supplements have to be taken for the rest of your life.

Among the symptoms are extreme anxiety, pale skin, sound and light sensitivity, depression, chemical sensitivity, low stomach acid, low glutathione, high HDL/low LDL, sleeplessness and then all kinds of mental illnesses that stem from severe imbalance. Spots on the fingernails are pretty much a guarantee of the condition. All of these are, of course, chronic conditions in the autism community.

This condition could explain why only certain kids are so affected by metals. It explains why a range of metals could cause autism, and not just mercury, which would explain why vaccines in and of themselves do not cause autism in all children. This also means that chelation would only be part of the answer for our kids if we were not able to take all future metals exposure out of the environment; they would replace the voids left by zinc again, and you would also be dealing with severe zinc deficiency (and B6 and manganese and biotin) even after the metals were gone.

Here's a bit of what we've seen so far. This is one of the biggest WOWs we've ever had, and is doing great things for EVERYONE in my family.

My daughter, heavy anxiety and ADHD behavior, sat and read books on her own the first day we gave her zinc. It has made a huge difference in her overall behavior, and we are still just ramping up at very low doses of the supplements listed above, and have missed many days. The zinc is needed by the body to make stomach acid, and the zinc needs the acid in the stomach or it will give you a stomach ache. Dr. Klinghardt says that if zinc gives you a horrible stomach ache it is a clue that you may be dealing with KPU. It hurt my daughter's stomach enough that I don't give it to her on "important" days. This is said to normalize after about 4 months on the protocol. She suffers from severe anxiety, sound sensitivity, ADHD-type symptoms, difficulty reading, bad sleep patterns and hypoglycemia. All of these are much, much better after just low doses of the supplements over the last month.

And then there's my mostly recovered son. After beginning the protocol--and again, we are ramping up slowly and are still at pretty low doses--my husband must have said 10 times how articulate and clear-thinking my son was. He was asking GREAT questions about complicated things, sitting at the dinner table for discussions. He sat and read some real books on his own, not just graphic novels. This has overall bumped everything up a notch for him, and again, we're just at low levels.

And me--I am feeling good, sleeping very well, with better and better energy. But the detox that happens with the protocol can be quite severe--you are, essentially, turning the immune system back on when you begin taking the supplements. Dr. klinghardt says that an immune system without zinc is like a gun without bullets. Detox can be really bad, and that is the biggest problem with the protocol. And that's why we're ramping up. But what I am seeing in myself is the SAME things that I saw when I used LDN at very low doses for a few months. My two main health issues have been chroic kidney infections and back problems. When I took LDN, I first got huge kidney issues after being well for maybe two years, and then immediately my back, where the injury is, became severely inflamed. As if an infection there were finally being addressed. This happened again, only worse. My back is still inflamed as I write, but getting better each day. Also I have a rash that comes and goes on my lower back. That rash broke out worse than I have ever had it, got all weepy and "wet" (sorry, TMI!) and then went away. I think my body is working out infection. I think this because I am feeling steadily better each day.

My son is not showing any huge detox at this time. The detox is said to begin at about week 3-4, and it was right on time with me. My kids started later and at lower doses. My youngest dd is just today beginning to complain of her back hurting and is slow. But her attitude is great, anxiety SO much better, sound sensitivity and inability to handle stimuli so much better. My son is at scout camp this week; I will track him closely when he comes home and post.

Here is an article to read. There are many on the net. There are also support groups on yahoo; I have just joined one but have not spent much time there yet.

http://www.dr-bob.org/babble/alter/2005 ... 98689.html

This is the biggest discovery for me since we began our journey over 11 years ago. My whole family has health issues, and I am beyond excited that this might be a huge help to all of them.

Here is a really big thing too. Klinghardt has found that those with intractable infections (viral, mold, Lyme) nearly always have this. When the protocol is in place, the person is able to throw off the infection, and is not prone to problems with it later. For instance, fixing the KPU allows a person to get rid of the systemic infection (finally!) and after that, he is not affected by normal amounts of mold in the environment. I have read two places where people have gotten rid of XMRV with the protocol. ALso MRSA. This allows people to finally get rid of Lyme.

The doses Klinghardt uses of the supplements are quite high--as much as 250 mg. of zinc until the levels are stabilized, and very high doses of B6 as well. Many of you old-timers here may remember that the first biomedical intervention for autism was high-dose B6.

Please watch the video. I have watched it five times so far, and get new info from it each time. Every minute is good stuff. His site is also great.

Thank you Omamma for sending me this!!!! Thanking the Lord for you daily!
Last edited by amanda NC on Sat Jul 30, 2011 7:58 am, edited 2 times in total.
Amanda, mom of 3

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

Postby SleepingUnderStars » Thu Jul 21, 2011 8:54 pm

Wow, thanks for sharing this information!

You know, mold will become an even greater issue among homeowners as time goes on, many homes that were/are in foreclosure for some time are going to contribute to big future health problems quite possibly.

I still love the NDF product from Bioray and it does address mycotoxins.

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

Postby susiejay » Fri Jul 22, 2011 11:30 am

I've watch most of the video and it is really interesting.

Did you do the lab testing on your family to see if you have pyroluria?

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

Postby Omamma » Fri Jul 22, 2011 11:53 am

This protocol seems to be our "magic bullet" as well! We've been doing this for a little over 2 months, and the changes have been astounding! I've read that if KPU is an issue for you, you can see results within just a few days, which seemed to be the case for us. DD is much more aware and involved in the world around her, her language is exploding, and she is just becoming down right fun!!! It has been so heart-warming for me to see her relationship with her brother really start to develop. While she still has many autistic traits, she is really making dramatic improvements. We have had several people comment on the improvements.
We've done biomed for about 5 years now, and I've seen subtle improvements in dd over that time, but this has been by far the most dramatic jump for her! We also recently bought an iPad for her, which I think may be adding to the wows, but there is an obvious physical improvement in her that cannot be attributed to the ipad.
While I don't know that KPU is an issue for everyone, it would be worth looking into. DD really fit the profile, so we just started a trial of the supplements. Now, I am on the fence as to whether or not to confirm the diagnosis by urine testing, because that would mean stopping the supplements and periodic regression. I guess we'll get our DAN's opinion...
PLEASE check out the video Amanda posted...it is so worth your time!!!!
Amanda, thank you for posting this info so clearly!!! I might check with the mod. about getting it "stickied", because I really think it could be so helpful to others!!!!

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

Postby Pearl1981 » Fri Jul 22, 2011 12:39 pm

This is amazing. Sorry if you have already mentioned these points but I have a few questions ....my processing power is very low - I have been in hospital for my daughters lazy eye problem since 6am this morning and they are only done.

1) does this have to be done along with chelation/can it be done instead of?
2) what is the dosage for kids
3) is it life long mega dosage?

Many thanks
Daughter 5y.o lost diagnosis - 100 rounds cutler. Aspergers/ autism @2yrs

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

Postby AnxiousDad » Fri Jul 22, 2011 12:47 pm

Zinc Supplementation 20 mg/day for one year and 50 mg/day while doing AC chelation caused a condition called zinc induced sideroblastic annemia in my son.
Excessive B6 supplementation can cause peripheral neuropathy and is one of the toxicity symptom of excessive B6 supplementation. Lesson learnt first do no harm. Second make sure that you are supplementing everything in balance.

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

Postby Pearl1981 » Fri Jul 22, 2011 2:16 pm

But I guess if the vitamins are fully excreted and deficient they should not cause overload in the body and cause problems? I have heard that zinc stops with iron absorption though? Or competes with iron I can't remember ...
Daughter 5y.o lost diagnosis - 100 rounds cutler. Aspergers/ autism @2yrs

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

Postby Omamma » Fri Jul 22, 2011 3:14 pm

Very good point AnxiousDad. Almost everything I've read on pyrroluria says treatment should be done under physician supervision, especially because of the zinc balance. We have not discussed this protocol with our DAN yet, but intend to. In the mean time, we are on very conservative doses of everything.
I would strongly caution against mega-dosing unsupervised. You are right, first do no harm.
With that being said, I still think this is very worth looking into. Dr. Klinghardt estimates up to 80% of autistic children may have this disorder, and that by treating this condition, the other biomed interventions become more effective.

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

Postby Kari » Fri Jul 22, 2011 3:39 pm

If a child tested in range for zinc, does that rule it out? I'm not able to watch the video right now. thanks.

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

Postby dabaxter » Fri Jul 22, 2011 4:44 pm

Where did you go for the KPU test?
$5 off iherb.com. Use:REW815/$5 off pureformulas.com Use:RJNXCX

mhflo73
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby mhflo73 » Sun Jul 24, 2011 4:35 pm

Thanks for sending the link of this video. That was an extremely informative video from start to finish. His protocol sounds interesting but certainly not one to do without the guidance of a doctor. Also all the metals dumping at once sounds rather risky though I'm really impressed to hear some of his severe cases and their quick recoveries. Thanks again for sharing. I'd love to hear an update on how your kids do on this. thanks

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

Postby LSY » Fri Jul 29, 2011 6:59 am

Thanks so much for telling me about this, Amanda! I asked our DAN about this and are going to have our DS's Zinc, B6 and Copper Manganese checked this weekend along with his Lyme tests.

Just checking in to see how your kids are doing. Have they experienced any detox symptoms? If so, would you mind sharing what they are?

Thanks again for bringing this to our attention!

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

Postby Dani » Fri Jul 29, 2011 6:20 pm

Thanks for sharing this. I'm going to have this more closely when I go home.
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 » Sat Jul 30, 2011 10:36 am

I'll be on vacation, but a very quick update--will write more when I'm home.

My dd's anxiousness has lessened SO much! She is SLEEPING!!! This is huge for us, as for her whole life she never slept deeply. She would walk in her sleep, and no matter WHAT time we'd go into her room--2:00, 4:00, whatever--she'd look up and say, "Hi Mom!" or "Hi, Dad!" For her last tooth, the Tooth Fairy mailed her her money since we could never catch her asleep to leave it. And no matter how late she'd go to bed--and usually she'd be awake until 11:00, she'd be up by 7:00.

Now she is sleeping until 9:00, until almost 10:00 one day. She is sleeping soundly. She is not awake. Also, neither am I. I fall asleep at 11:00, and am awake, feeling good, by 6:00, or earlier some days. Like it's supposed to be.

My own mood is much, much better. The depression hanging there is mostly gone.

My son is feeling very good too. I feel the gains with him are much like we saw with LDN, which makes sense as the zinc is now supposedly being used by the immune system when none was available before. His mood is good, his expressive language is good, he is engaging much more by choice and is not being such a loner. Again, it is like the general fatigue in both mind and body is lessening.

I am still very, very excited about this, and will continue to post more when I get back. Have a good week, all!!
Amanda, mom of 3

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

Postby OneRockAtATime » Sat Jul 30, 2011 12:24 pm

Really interesting as my son has an XMRV dx. I will go watch the video but wanted to see the updates so I posted.

dgdavis64
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Re: PLEASE READ--KPU major player in autism; our magic bullet!

Postby dgdavis64 » Sat Jul 30, 2011 1:14 pm

This is really interesting since both my kids and I tested positive for Lyme. Is this Dr saying that the bacteria can cross from the mother to the kids? If the child has this, what type of effect do vaccines have on them? And what bearing does this have on the testing of heavy metal toxicity on the kids? I mean, wouldn't these kids be testing high for heavy metals instead of testing near zero and being labeled "poor excreters?"

Beware of the pharma trollbot shills posting from anonymous proxy servers

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

Postby amanda NC » Sat Jul 30, 2011 1:56 pm

Gosh, don't have time to post much now, but the video explains all that. It is a very interesting video, so it isn't a waste of time. I really think anyone here would really enjoy hearing his take on what's going on with our kids--it is a different perspective from what I usually hear in DAN circles.

ORAAT--I thought of you right away when I read about the XMRV. The crux of it is that without zinc, you effectively have no immune system. Also the lack of B6 causes all kinds of issues too, of course. Correct the zinc and B6, the immune system begins to function again and you are able to kick out the viruses.

The lack of zinc affects the metals issue because your body will put other two valent (sp?) metals where zinc is supposed to be. So a child without zinc will pack whatever two-valent metals he comes in contact with in places where the zinc is supposed to be--think thimerisol. So if a child is very low zinc, and gets a vaccination, that's the child who will take in the mercury and retain it. So I am wondering if he was suggesting this as a new theory of why some kids have such huge reactions to the vaccinations and retain the metals; this is maybe why they did not excrete the metals.

MY KIDS ARE NOT HAVING ANY BAD REACTION WHATSOEVER TO THE PROTOCOL. None. My oldest hurt her back when she was young, and has had just a mild back ache for a few days (gone now). Also, as I read about pyroluria elsewhere, there is no mention of this regression that Klinghardt talks about in such strong terms. I, however, AM having the back issue, but while my back's really inflamed (it's going away slowly) overall I am feeling MUCH better. My kids are having gains and no backsliding. But again, still at low doses, and may stay low for awhile. Just 25 mg zinc for my girls and me, 50 mg zinc for my son who was already taking some zinc, and 50 mg of the B6. Haven't gotten the P5P yet. Two capsules for each of us of EPO. 4 mg manganese. Not taking the zinc on an empty stomach, but with breakfast until it no longer bothers our stomachs so much. My daughters got dizzy after taking it at first on an empty stomach; that seems to be normalizing now.

I know one woman who had great results with this protocol and her 20 yr old son; they went to Pfeiffer and were tested as part of their treatment there. She says she doesn't know what they would have done without this. She had done a huge amount of biomed before that. No mention of problems witht he protocol from her, either. So I wonder if it is not as pervasive as all that, maybe especially with people who are not so toxic.

Next week if you are all interested I will post links to some other sites I found info on. Again, pyroluria is also called pyrolluria, pyrolurria, KPU, HPU, Malvaria and Mauves. So many places to look for information on the net.

Oh--Klinghardt says that this condition can be caused by trauma (ORAAT--I am wondering if it is PSTD; the symptom profile is very similar.) He says ALL his Lyme patients have it. And that if the mom was under great stress, she can pass it to her children. And then also, of course, Lyme can be passed to the child as well.

I am floored that I may have found the underlying problem, and that the fix could be as simple as zinc and B6.
Amanda, mom of 3

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

Postby OneRockAtATime » Sat Jul 30, 2011 2:09 pm

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.

That is trippy as everyone of those runs in one side or the other of my son's family tree. All very close relatives too not some second cousin 2x removed. My son also has the simian line which is a mark of Down's Syndrome. He does not have Down's just the simian line which also a very close relative has. What amazes me most is that most cases of Autism are not genetic yet we can't get any real help from Dr's. It would be so much cheaper to treat these children then support them for the rest of their lives.

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

Postby amanda NC » Sat Jul 30, 2011 2:19 pm

Dr. Klinghardt says that the urine test they have used is HIGHLY flawed, and that the numbers might be as high as twice what you posted.

Oh--the white spots on nails is supposed to be a giveaway that the condition is present. Everyone in my family has them.

ORAAT--my family is the same. Their symptom list is my extended family too.
Amanda, mom of 3

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

Postby amanda NC » Sat Jul 30, 2011 3:23 pm

Oh--also, I think we are seeing something interesting with salicylates. They have been a big problem here; the biggest thing is that they would ruin our sleep. We had to stay low or would be awake much of the night. I feel like we are not nearly as sensitive to them now. That is a big deal here! It has broadened our food choices, though I am moving very slowly and carefully with that. After many years with very, very little sleep, for all of us, sleep is a huge blessing and I guard it carefully!!
Amanda, mom of 3


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