KPU test positive

[Christianmom]

My son recently had a KPU test ordered through a lyme doctor we were working with briefly (it was my idea to order the test, the lyme doctor was not familiar with it). Anyone I just got back the results and am no longer working with that doctor. My question is can I expect my PANDAS doctor (Dr. T) to be familiar with this test and be able to treat? Also, was wondering if there is anyone else whose PANDAS child tested positive for this. If so, what did you (or your doctor) do?

[LNN]

My DS9 has had great improvement since starting this treatment - different kid in so many ways. My DD6 just came back borderline and we started treatment last night. No Pandas doc I ever worked with suggested this. While I think zinc deficiencies are generally accepted and readily treated, I don't have the sense that KPU is accepted in the mainstream. Most of the research on it is 30 yrs old and centered on schizophrenia. When that research didn't pan out, it was abandoned. You can ask Dr T - if any of the Pandas docs would be open to it, it would be him. I have a few links you could send him if you were inclined.

 

We give CORE from Biopure. Started with one capsule/day and have built up to 3/day over the past 2 months. He also takes chlorella with each meal as part of the protocol. A few families on the lyme forum are treating KPU. You need to do blood work periodically to make sure minerals/vitamins are staying in balance. That, along with the possibility of mercury being dropped/chelated when you add zinc into a deficient system, makes it something I wouldn't treat long term without the assistance of an experienced doctor. But for us, it's been a critical missing piece. If you have a positive test result, I'd encourage you to find a doctor who will help you pursue it.

[Christianmom]

LLM -- Are either of your children's only symptom OCD? I was so surprised when my son's test came back positive as he really had no symptoms other than OCD and some hypoglycemia. Also, when I had him take the urine sample, I didn't know about not using the first morning urine, not exposing the sample to light, or adding 500 mg. of ascorbic as a preservative. So basically I made a lot of mistakes with the sample. Is that OK? I would think my mistakes would have made the test come back negative instead of positive. But it came back 30.5 which the tests notes as "extreme" positive. So with all my mistakes can I assume my son would have come back even higher had I done it correctly?

 

Also, do you think having my naturopath guide the KPU treatment would work? I have an excellent naturopathic doctor who is very accessible to me. I know Dr. T would have to stay involved to order testing, but I would feel better if my naturopath was guiding the treatment as Dr. T is so hard to reach. And as much as I respect him, he doesn't seem to be up on natural things.

 

Also was wondering, since KPU is positive for my son, should I and my other children be checked as I read it can be inherited through the mother. We are awaiting mold testing as I know mold (and lyme) are possible causes of KPU as well. Thank you so much!

[LNN]

No, my kids issues go beyond OCD. My son was "classic" Pandas, multiple confirmed exacerbations with strep, HUGE tics, adhd, rage, urinary issues...but he likely contracted lyme/bartonella a few months before the first strep and may have had KPU all along (odd moments in toddlerhood illnesses come to mind). My daughter's issues are primarily OCD/intrusive thoughts but a little ADD and some GI issues. Both kids had very high CAM K but my daughter has never had strep that we know of. Her lyme results are inconclusive.

 

Some feel KPU can be lyme-induced and could resolve once the lyme is treated.For my family, I feel it could be an inherited/life long condition, as I had a zinc deficiency as a kid and almost always need abx to get over an illness. When the kids are over the treatment hump and funds are available, I may have myself tested. But not the priority right now. Getting your family tested might not be a bad idea, but if money is an issue, I'd test the ones most prone to illness first. Your son's results seem very high. My DS was 20, the threshold for "positive" and my DD was 13.6, making her borderline. You can call the lab to ask how your mistakes may have influenced the results - they've been very helpful when I've called.

 

I think working with a naturopath whom you trust is a great approach. He/she probably has a lot of insight that will help. Maintaining a balance of vitamins and minerals becomes very important. Looking out for signs of mercury toxicity and having a way to bind any metals (that's what the chlorella is for) is also important. So having someone to help you with this stuff and who is quickly accessible is key.

 

You see one-liners in the literature that link KPU with OCD but it's never the primary focus of the article. Same with bartonella. You'll see a phrase that says if an LLMD sees lots of neuropsych issues, suspect bartonella. Then the article goes onto something else. So hard to know what to do when the research just isn't there one way or the other. But the B vitamins are critical to mental health and brain functions and zinc is critical to the immune system. So if you know KPU is an issue, then treating with the CORE zinc/B6 supplement is going to help your son no matter what else is going on. It seems like a good next step to pursue.

[Christianmom]

Some feel KPU can be lyme-induced and could resolve once the lyme is treated.

 

Thank you so much for your thorough reply!

 

I had thought the opposite about the lyme connection -- treat KPU and then lyme treatment will be effective. I had thought that possibly the KPU problem was keeping my son's lyme (or mycoplasma or whatever my son has) treatment from working.

[LNN]

Yes, you're right. KPU, for those who have it, is thought to be (one of?) the condition that's making it so hard to fight the lyme. You have that right. It's a chicken/egg thing as to which came first, but the steps are to treat KPU then go back after the lyme. Some feel that if you do it in this order, you may eventually get rid of both conditions.

 

My comment was geared more toward the other possibility. In my family, I tend to think KPU was always there and may always be there. But then lyme came and it's been hard to treat because of KPU. For DS, I'm not counting on getting rid of both conditions. Only the lyme. We may need to treat the KPU forever, but in time, that may mean only one pill/day and I can live with that. It will be like having to take a multi-vitamin every day, only stronger. I'll be happy to see both go away, but that's not my mindset right now. Sorry if I confused you.

[philamom]

LLM- you know this is something I plan to look into - just haven't taken that step yet. Is there a downside to taking CORE without a diagnosis of KPU? Starting very slowly.

[LNN]

LLM- you know this is something I plan to look into - just haven't taken that step yet. Is there a downside to taking CORE without a diagnosis of KPU? Starting very slowly.

Tap, tap, tap (me tapping my foot, with arms crossed, telling you to have her pee in the cup already! )

Short term, few weeks, probably not a big downside. But too much anything isn't a good thing. So if she's peeing zinc out of her body before her immune system gets a chance to use it, then giving CORE will help. First few weeks, the body will probably soak it up and get to some sort of equilibrium point. Beyond a few weeks, if you have KPU, then the body will happily keep sopping up the zinc et al and then start to drop metals, if those have been glommed onto (that's a medical term) in lieu of the zinc that had been missing. So you need a binder (usually lots of chlorella or DMSA or Alpha lipoic acid)to bind to the chelating metals. If you don't do this step adequately, you may stir up the metals without getting them out.

 

But if she doesn't have KPU, then giving CORE for more than a few weeks could put other things out of whack. Zinc is an agonist to copper. Too much zinc and copper levels can get too low. The other minerals/vitamins in CORE also need to stay in balance with other minerals and vitamins. More is not always better. The goal is "just enough". Except in people with KPU (whether inherited or infection-related), their bodies have never had just enough. So the mega supplement brings a deficiency into a normal level.

 

So you need to have her pee in the cup, tell your family not to open the jar in the fridge that's wrapped in tin foil, and do the test. Do it on a Sat/Sun and freeze the pee until you can get to FedEx on a Monday.

 

Yes, my Pandas friends reading this - I have gone off the deep end. No longer just worried about strep. I now publicly talk about metals and detox and all the nutty lyme stuff. But DS is so much better. So I guess you stick with what works. For us, vitamins and minerals have helped far more than pex or IVIG. Who knew?

 

Sorry to hijack the Pandas forum with this thread.

[norcalmom]

what is KPU ?- I just tried to google it, but didn't see any obvious meaning for the acronym.

thanks-

[LNN]

KPU stands for Kryptopyrroluria (aka Hemopyrrollactamuria). Very hard to find info. You can google pyroluria and find a little info on sites from intergrative doctors. You can google "mauve factor" and determine that it's a "real" condition of dysfunction in blood (heme) synthesis and is recognized by traditional medicine. But all the scientific research I've found is 30 yrs old and focuses on whether mauve factor causes schizophrenia. When that theory didn't pan out, the research ran dry.

 

Klinghardt (and others) picked the theory up and started looking for it in chronic lyme and autism patients and they've found a high rate of incidence in this group. Here's an article http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

Here's a video from autism one http://www.autismone.org/content/hemo-pyrrol-lactam-uria-hpu-lyme-disease-and-autism-dietritch-klinghardt-md-wwwliafoundation

 

KPU isn't a deficiency you can measure in a blood test (it's a urine test done by a specialty lab). There are sufficient levels of zinc in the blood of a KPU patient. It's that the zinc gets bound to pyroles and gets pee'd out of the body without being used, esp. by the immune system. So you need to put tons of zinc into the system so there's enough available for the body to use. But it's a balance thing. Not something to just start tossing into your kid. I think KPU is somewhat or fairly well known in lyme circles and maybe integrative circles but not in other circles, at least in my experience. I was initially cautious but this was by far the single most helpful thing we've tried in the past three years. It's not the only thing that's helped by any means, but it's at the top of the list.

Edited September 27, 2011 by LLM

[norcalmom]

Thanks LLM that is interesting. I will read-up on it. My son did come up deficient on zinc a couple years ago, which sent me to gastoenterologist thinking he was perhaps celiac. She did a different test and he was in normal range on that, and said that kids zinc fluctuates alot with growth, etc...but always made me worry a little, also def ferretin. Another mineral seems not absorbing - getting plenty in diet. I did supplement a Little zinc for a while (under docs supervision) - bu DS hated taste - and I didn't seee any difference.

[eljomom]

Christianmom---How are you testing mold?

 

LLM -- Are either of your children's only symptom OCD? I was so surprised when my son's test came back positive as he really had no symptoms other than OCD and some hypoglycemia. Also, when I had him take the urine sample, I didn't know about not using the first morning urine, not exposing the sample to light, or adding 500 mg. of ascorbic as a preservative. So basically I made a lot of mistakes with the sample. Is that OK? I would think my mistakes would have made the test come back negative instead of positive. But it came back 30.5 which the tests notes as "extreme" positive. So with all my mistakes can I assume my son would have come back even higher had I done it correctly?

 

Also, do you think having my naturopath guide the KPU treatment would work? I have an excellent naturopathic doctor who is very accessible to me. I know Dr. T would have to stay involved to order testing, but I would feel better if my naturopath was guiding the treatment as Dr. T is so hard to reach. And as much as I respect him, he doesn't seem to be up on natural things.

 

Also was wondering, since KPU is positive for my son, should I and my other children be checked as I read it can be inherited through the mother. We are awaiting mold testing as I know mold (and lyme) are possible causes of KPU as well. Thank you so much!

[Christianmom]

Christianmom---How are you testing mold?

 

 

My son is having a c3a and c4a complement test run through LabCorp. Unfortunately the hospital ordered the wrong test (did a c3 and c4 complement test instead) so I am waiting to have the right test done. The hospital has to order a preservative from Labcorp before they can run the test and I am waiting for this to come in.

[philamom]

LLM- you know this is something I plan to look into - just haven't taken that step yet. Is there a downside to taking CORE without a diagnosis of KPU? Starting very slowly.

Tap, tap, tap (me tapping my foot, with arms crossed, telling you to have her pee in the cup already! )

Short term, few weeks, probably not a big downside. But too much anything isn't a good thing. So if she's peeing zinc out of her body before her immune system gets a chance to use it, then giving CORE will help. First few weeks, the body will probably soak it up and get to some sort of equilibrium point. Beyond a few weeks, if you have KPU, then the body will happily keep sopping up the zinc et al and then start to drop metals, if those have been glommed onto (that's a medical term) in lieu of the zinc that had been missing. So you need a binder (usually lots of chlorella or DMSA or Alpha lipoic acid)to bind to the chelating metals. If you don't do this step adequately, you may stir up the metals without getting them out.

 

But if she doesn't have KPU, then giving CORE for more than a few weeks could put other things out of whack. Zinc is an agonist to copper. Too much zinc and copper levels can get too low. The other minerals/vitamins in CORE also need to stay in balance with other minerals and vitamins. More is not always better. The goal is "just enough". Except in people with KPU (whether inherited or infection-related), their bodies have never had just enough. So the mega supplement brings a deficiency into a normal level.

 

So you need to have her pee in the cup, tell your family not to open the jar in the fridge that's wrapped in tin foil, and do the test. Do it on a Sat/Sun and freeze the pee until you can get to FedEx on a Monday.

 

Yes, my Pandas friends reading this - I have gone off the deep end. No longer just worried about strep. I now publicly talk about metals and detox and all the nutty lyme stuff. But DS is so much better. So I guess you stick with what works. For us, vitamins and minerals have helped far more than pex or IVIG. Who knew?

 

Sorry to hijack the Pandas forum with this thread.

Ouch! I think I just felt a kick in the @#*&. :-)

I'll order the kit next week. Gee... another fun weekend to look foward too.

Thanks for the explanation!!

[smartyjones]

[

But if she doesn't have KPU, then giving CORE for more than a few weeks could put other things out of whack. Zinc is an agonist to copper. Too much zinc and copper levels can get too low. The other minerals/vitamins in CORE also need to stay in balance with other minerals and vitamins. More is not always better. The goal is "just enough".

 

 

LLLM -- so do you continually test for KPU? how do you know when you've reached the proper balance?

thanks.