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Hello everyone,

I am trying to get as much feedback as j can about pyroluria . My first question those who have done this test on their own how reliable was it and how have you proceeded with supplements? Did you take results to doctor so she can recommend treatment? I have been researching this a lot lately and feel that everything describes ds. I have heard that ped might not know much about this. Any info on this would be very helpful!!

Mar

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Pyroluria can't be detected in a blood test.

 

In pyroluria, your body produces an excess of pyroles as it's manufacturing red blood cells. These pyroles like to bind to zinc and B6 while it's in your bloodstream, before the zinc and B6 get absorbed into cells. Because pyroles are a waste byproduct, your body excretes them in your urine - along with the zinc and B6. So a blood test could show a normal amount of zinc and B6. What it doesn't show is that that same zinc and B6 is unavailable to your cells because it has pyroles bound to it. Your blood levels of zinc and B6 could be "normal" but bio-unavailable to do their work within a cell. The urine test looks for the amount of pyroles in it (it shows as a mauve color under testing conditions). If you have more than a normal amount of pyroles in your urine, you have pyroluria and it's assumed that you're excreting a more than normal amount of zinc and B6. So the test isn't measuring zinc or B6 - it's measuring pyroles.

 

People with pyroluria also tend to be deficient in Omega 6s, so evening primrose (a non-inflammatory Omega 6) is recommended as a supplement in addition to zinc and B6.

 

Treating the condition is best done under the supervision of an integrative doctor, osteopath, DAN, LLMD or naturopath. It can start with supplementing a small amount of the deficient elements. But as you get into the process, systems that have been running at inefficient levels (like your detox and immune systems) may start to kick-start. This can cause new symptoms to emerge - a herx-like response where things can get worse before they get better. To handle this, it's best to have someone with experience help you along. But that isn't always easy to find.

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i also began wondering about this a year or so ago when people began posting. my ds did show some symptoms but i didn't feel it was a slam -dunk b/c he is more of a copper personality - so i also wondered about the zinc/copper issue also. these issues can get complicated b/c there is a lot about balance and what keeps what in line in a type of yin-yang relationship. i asked our integrative MD who does great work with infecitons. he wasn't concerned b/c he is of the mind that the infection causes the trouble -- clear the infection, you should clear the trouble. (not that simple - he's more in tune than that but with vitamin/mineral imbalance - tends to think along those lines)

 

nice theory -- but. . . ds was doing great cleaing infection - was still having trouble i didn't think he should be having. he had 2 exacerbations last year -- one due to stress, the other due to allergic reaction to sunscreen. so -- back on the trail.

 

however, i was concerned that i needed someone to guide this that really understood and knew what they were doing with these zinc/copper/B6/pyroluria issues.

 

i agree with LLM's comments about blood testing for minerals. ds does test with low normal zinc, normal copper -- but with an inappropriate copper/zinc balance. surprising to everyone, he urine tests in normal range for pyroluria -- meaning negative for it. docs do think this is a little bizarre. however, his treatment would be about the same b/c we are supplementing zinc and other vitamins/minerals - so basically about the same as if he had tested high. we'll have to rethink this after some treatment and see if he really is not pyroluric and it is zinc/copper issue or if really excretes too much zinc/B6 for guidance of future treatments -- but now is basically same. we have titrated up very slowly b/c of school starting -- ds is not at full dose yet -- but i do think i see improvements in temperment, frustration, affection - generally more easy-going.

 

bottom line -- i had considered if i was going to try to do this myself -- b/c seems easy enough to see an imbalance and supplement but for me, i really knew i wanted someone to guide it.

Edited by smartyjones
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Hi- I just sent a test in for myself on this-

I don't think it's an issue for me, however a statistic out there says something like 80% of Lyme folk probably/do have this issue,

and,

super smart LLM says it was a huge piece for her child (re: big healing)

so, I sent in the test.

Honestly, if it comes back positive, sure, I'll show my Dr. (who has never mentioned it to me)

but I will just buy the Biopure Core supplement and go from there...

 

By the way, our LLMD is also of the belief: treat the infections, and the rest of everything will fall into place (including any viral issues)

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My son tested positive for KPU (pyroluria) through Vitamin Diagnostics. His results were 30.5 (reference range: <15.0). This number was probably low because I only used his first morning urine. It was one of the clues that eventually took us down the lyme path with him.

 

He is taking 4 CORE/day (by Biopure) and Borage oil (Pure Encapsulations, 1,000 mg. (1 pill/day)). He also takes 2 basic b-complex tablets per day as well as a host of other supplements for under-methylation, lyme, bartonella, babesia, strep, and detox. He is not currently on any antibiotics).

 

We began treating KPU at the same time we began lyme treatment. The first step of lyme treatment was to treat parasites. We definitely saw noticeable improvement after treating parasites, but I'm sure the improvement was also due to treating the KPU (doctor calls it "HPU").

 

I would agree that it is important to find a doctor to help you with KPU treatment and not to venture off by yourself. Every child is different. The trick is finding a doctor who really understands how to treat KPU. It will probably be a natural doctor of some time. Any good lyme doctor could help you. I would caution you about going to a pediatrician for a couple of reason. One is that they may tell you there is no such thing as pyroluria (it is not a popular diagnosis in the medical community), and two, you don't want your child to be the first pyroluria patient they treat. You need a doctor with experience in treating it.

 

In our case, we were already seeing a naturopath, and I asked him to treat my son. I showed him all the information from Dr. Klinghardt's site and his protocol. Unfortunately, we wasted a lot of time with this naturopath because though he meant well, he had never treated pyroluria. So my son's pyroluria wasn't really addressed until we found a good lyme doctor.

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