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

Discuss autism diets and biomedical treatments of autism.

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momof6
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby momof6 » Fri Nov 30, 2012 12:26 pm

Hello...I was reading through this old post regarding KPU & Lyme, and I was wondering how active testing and positive findings have been lately. I watched the Dr. Klinghart presentation link that was provided. Many of the symptoms listed for Lyme/PKU/Severe Zinc Deficiency also sound like many general autism symptoms....pale skin, neurologic/cognition difficulities, language delays, stomach pain, chronic infections, deformed toe nails due to thinness, etc.

What really jumped out at me was the mention of how Lyme likes to invade hosts that have chronic infections. My little guy has had 20+ ear infections from 0-3 years, and he's just generally sick & congested from fall through spring every year. The pediatrician in the past has blamed it on allergies. That's a contributing factor, but it's deeper than that. Also, Dr. Klinghart mentioned that the Lyme kiddos with autism have all had some exposure to mold. The current house we live in is 30 years old. It has a finished basement and has been subjected to at least 6 floods since we moved here 7 years ago until we finally got a grading problem fixed on our property....our basement would flood with heavy rainfalls, the ground would oversaturate and soon waterfalls would be pouring through our window wells in the basement. We've ripped up & replaced our carpeting and did major cleaning/disinfecting with every floood. However, the entire basement is finished with drywall, and I'm scared to think what's behind the drywall.....MOLD. And God only knows how many times the basement flooded before we moved in. Like I said, the house is 30 years old, the basement was finished when we moved in, and the flooding problem was never disclosed.

So, with Conor's compromised immune system and ability to detoxify, I'd venture to say he's loaded with mold spores giving easy way to Lyme....like Dr. Klinghart says. I wish I knew of a way to remedy that potential problem we have in our basement without having to rip down all our drywalls and re-finish the entire basement. The kids spend a lot of time down there, and it's our favorite place to hang out. We don't have that kind of money. I purchased a HEPA filter for downstairs, but I don't think that's enough.

Anyway, our DAN has ordered a Lyme (western blot) test, and we need to go get that drawn along with some other labs. Is this KPU/zinc deficiency the same thing....the $55 test that Dr. Klinghart talked about?

kulkulkan
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby kulkulkan » Fri Nov 30, 2012 1:44 pm

Haven't really looked into KPU/Lyme, but guessing it is this KPU (kryptopyrrole) urine test.

http://www.greatplainslaboratory.com/ho ... yrrole.asp

Also available from most commercial labs, so your doc should be able to order it.

TanyaTS
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby TanyaTS » Sun Dec 16, 2012 9:33 am

Where can you get the KPU test?

momof6
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby momof6 » Sun Dec 16, 2012 11:59 am

I think this is the 24-hr KPU lab test that Dr. Klinghardt suggested in his video: http://www.forresthealth.com/kpu-test.html. You can also get it from Great Plains like kulkulkan suggested.

TanyaTS
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby TanyaTS » Sun Dec 16, 2012 4:33 pm

Thanks for the link!

This is a very long, super duper info-packed thread and I haven't had chance to read through all of it - but you all keep stressing chelation is a must during this protocol.. The unfortunate thing for my son is the sulfur chelators like Cutler uses for example, my kid cannot tolerate at all. In fact, even garlic sends him into a tailspin..

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

Postby amanda NC » Mon Dec 17, 2012 7:49 pm

I was the original poster on this thread. I wanted to say that while we had chelated my son for awhile before doing this protocol, we had not chelated my NT daughter. She has really done great on lower doses of this protocol. I use only 1/4 of a 250 mg B6 tablet and about 15-20 mg zinc, and 2 mg of manganese for her. It stops her severe anxiety in its tracks. Actually we had dropped the protocol for several months, as she hates taking pills. She has slipped back to where she was a year ago, too anxious to stay at school without me in the parking lot. It has only taken about a week of the low doses for the anxiety to sibside again. It also really helps her sleep.

We have never done any testing, as in the beginning I couldn't find the source suggested. Both my kids had virtually all the signs, though; my son's fingernails especially are COVERED with white spots, which Klinghardt says is a "guarantee" of the condition.

We still keep the protocol in place. My son is 15, and takes 50 mg zinc daily, and 30 mg P5P, and 4 mg manganese. We do the biotin on and off--I just forget. I think it's important to keep the biotin in, though. We have never done the really high doses Klinghardt suggests, but more on the level of Dr. Bob's doses, as I recall.
Amanda, mom of 3

KKKK74
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby KKKK74 » Mon Dec 17, 2012 8:01 pm

Sorry Amanda - does Klinghart recommend really large doses of biotin specifically ? If so do you happen to know what sort of dose ? Just curious my son was accidentally on a double dose of biotin for about 6 months (it was taken out of his compound to reintroduce another biotin containing supplement but then was put back in on the 2nd and 3rd order and I didn't notice).

Anyway when he was on on the double dose biotin he was doing really well - now he has dipped again and the OCD defiance is back. I had put it down to other things but now I'm a bit curious if the double dose biotin may have helped somehow.

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

Postby amanda NC » Mon Dec 17, 2012 8:56 pm

Sorry-I meant high doses of ALL the kpu supps. Klinghardt's suggested doses are listed in this thread someplace, but we are not usibg anywhere near what he suggests. i stay around 25-50 for my son on zinc, and at the above doses on the others.

Susan Owens did a lot of research on biotin and yeast that you can find on the net. Full gram doses, I think.

Anyway, just the 15 mg zinc and the 1/4 of the 259 mg tablet does awesome things for my dd10--and it made her grow! a lot! She was very small and shot up within weeks, and after a year is now right on track for size.
Amanda, mom of 3

KKKK74
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby KKKK74 » Mon Dec 17, 2012 9:15 pm

Don't worry I thought that was probably what you meant. But thanks anyway you've given me thoughts generally about the biotin.

kulkulkan
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby kulkulkan » Mon Dec 17, 2012 10:11 pm

Has anybody tested positive for Lyme or KPU or tested CD57? I realize false negatives are possible. Also Wouldn't zinc dumping show up in urine, hair or stool?

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

Postby amanda NC » Mon Dec 17, 2012 10:47 pm

This is some good info. Susan used as much as 10 grams for autistics.

http://www.kingswaycompounding.com.au/N ... iotin.aspx

She said it is very safe. I have never trialed that much, though. Glad this came up- worth a look, IMO. I will get more on board here.
Amanda, mom of 3

KKKK74
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby KKKK74 » Mon Dec 17, 2012 11:31 pm

My son mild/moderate kpu. The bench mark is below 10 negative, 10-15 borderline, above 15 positive.

My son's result was 10.2 but when he ran the test he was taking his supplements - regular ASD high doses but not the kpu mega-doses. We reckon that means that without the supplements he would be around 15. We can't run the test in this country so will re-do it in March when we are in Australia. I am also going to test myself and he baby then and suspect we will have positive results.

I am definitely going to look into the biotin more !

KKKK74
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby KKKK74 » Mon Dec 17, 2012 11:49 pm

Just checked he is normally on 600 mcg and went up to 1000 mcg when we were doubling up. So no where near the doses Susan Owens is talking about but I think I am going to trial him back on 1000 mcg and see.

TanyaTS
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby TanyaTS » Tue Dec 18, 2012 1:32 am

Thanks Amanda! Ok good to know you are seeing nice things with your daughter without the chelation on board... My son has almost all the signs - slow growth, face dose not hold a tan near as much as the rest of his body, poor stress tolerance, thin toenails (no white spots though but he does have ridges on his nails), also the mold issues.. We just sent off a couple of the labs that Shoemaker tests for biotoxin illness... This might be a missing link for us too (nearly 11 looong years of diets/biomed/energy medicine stuff and still complicated).. Thanks for sharing!!

momof6
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby momof6 » Tue Dec 18, 2012 3:40 am

I'm so glad too that this thread was re-introduced. We have many of the risk factors & symptoms, and that's why it sparked my interest. Pale face, brittle toe nails, chronic congestion, joint pain, as well as likely mold issues in our basement & tick/lyme disease reports in our area. I read an article about a family of 5 who all got it. The mom, who's in her 50s, thinks she got bit by an infected tick when she was in her 20s, and then she passed on Lyme to the rest of her family....I'm not sure how it spreads from human to human? At any rate, she said her aches & chills got so bad that she could hardly ambulate, and after diagnosis & antibiotics, she's doing very well. Not sure how Lyme & mold = KPU (or do I have it backwards?), but I just know that we have many risk factors & symptoms.

For the past year I've been having muscle and joint aches that have gotten progressively worse, especially at night. I also get the chills at night. I did a google search, and the symptoms came up as "lyme disease".... Only thing, wouldn't I know if I got bit by a tick? Doesn't the head stay burrowed until it swells or something...I've never had anything like that and certainly haven't seen that on Conor. Anyway, I probably don't know enough, but warning signs were there enough for me to ask the DAN to order some tests. Just sent in KPU this morning. I have a Lyme kit from Stony Brook Medicine ready to be drawn, and Conor's CD57 is pending. We'll see.

pingumamma
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby pingumamma » Tue Dec 18, 2012 1:00 pm

I haven't managed to read all of this but am finding it very interesting. Can anyone tell me what dosage of transdermal zinc for a 5 year old 19kg child and also where on the body best place to apply time of day. Any advice appreciated. Bad tasting medications are a no no for us and I am worried about anything which is likely to upset his tummy being non-verbal.

CdB
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby CdB » Thu May 01, 2014 12:15 am

bump

luis
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby luis » Thu May 01, 2014 3:04 pm

Very interesting topic.

andyseattle
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby andyseattle » Sun May 04, 2014 12:02 am

My son, 3 yrs.
Just started
EPO 1000 mg
Biotin 2000 mcg
Magnesium 1000 mg
Zinc before bed

After 4 days, lots of improvement today.
He starts playing with his younger brother on his own, for 20 mins.
It seems his cognition is higher.

Thank you for your topic.

Mom_to_two
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Re: PLEASE READ--KPU major player in autism; our magic bulle

Postby Mom_to_two » Thu Jan 08, 2015 1:14 pm

Bump ( I meant to bump this post about the zinc and the metabolic disorder that some kids have), sorry for confusion! Kids are home and the weather is terrible out there. Hope this helps


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