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k07
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Date Joined Sep 2015
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   Posted 2/8/2018 2:07 PM (GMT -6)   
Have any of you looked into this? I've seen it mentioned a few times on here. Dr. K finds that most with lyme have this issue (80%). I am leaving no stone unturned as I approach my 3 year anniversary of symptom onset. I plan to do the urine test, but I also have low alkaline phosphatase and low wbc (per ranges below). KPU is genetic, and I found reference to gene Nbpf3 SNP: rs4654748. I pulled my genetic information in livewello and I'm homozygous for that particular SNP making KPU even more on my radar.

“Kryptopyrroluria (KPU) is a condition in which patients become zinc, biotin, B6, manganese, and omega-6 fatty acid deficient. As a result and in part, ‘their immune systems are like soldiers with guns without bullets’, says Dr. Dietrich Klinghardt, MD, PhD.” A “condition whereby the body” is unable to process and results “in severe mineral deficiencies.”

Stressful conditions make KPU worse.

You can find more information and symptoms at this link:
www.publichealthalert.org/kpuhpu-a-major-piece-of-the-puzzle-in-overcoming-chronic-lyme-disease.html. You'll find most overlap with lyme disease. I've also done the zinc assay test and failed. I am not sure how reliable it is though. Basically if you can't taste zinc you are deficient.

There is a urine test from health diagnostics for $55. This is the one Dr. K recommends. It is recommended to be off supplements for a week prior and to be under stress.

Other laboratory results that may be suggestive of HPU include:
WBC < 5000/mcL (due to low levels of zinc)

High LDL / Low HDL

Low normal alkaline phosphatase (<60U/L)

Low omega-6 fatty acids in red cell membrane test

Low taurine in amino acid profile

High MCV

WBC and RBC zinc and manganese levels may be normal while biopsies from bone and CNS are completely deficient

Bone biopsies are a reliable predictor of HPU. Severe deficiencies of zinc, manganese, lithium, calcium, magnesium, and molybdenum are often found
***
The fix for this is supplementing extra minerals that are deficient. This is life long. Biopure makes a supplement called "Core" that has all the minerals in it or you could do individually.

goshawk
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Date Joined Sep 2016
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   Posted 2/8/2018 5:11 PM (GMT -6)   
Hi I have read about this before but have not looked into it.

I know others have posted before about it so you might want to do a search and see what comes up.

Thanks for posting this.

Take care, Jo

k07
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Date Joined Sep 2015
Total Posts : 2548
   Posted 2/8/2018 7:16 PM (GMT -6)   
You'd think if 80% (which is what dr. k says) of us have this we'd be talking about it more. Just not sure about anything anymore.

1000Daisies
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Date Joined Apr 2016
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   Posted 2/8/2018 10:51 PM (GMT -6)   
Yep, we went down this path some time ago. Tested my kids. They were high and not high (it varied). We supplemented with BioPure Core off and on. I can't say that I contributed healing from it though. We did NOT continue on it.

Although it was NOT our missing link, I think it is something worthwhile pursuing.
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

The Dude Abides
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Date Joined May 2017
Total Posts : 1157
   Posted 2/8/2018 11:01 PM (GMT -6)   

k07
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Date Joined Sep 2015
Total Posts : 2548
   Posted 2/9/2018 6:40 AM (GMT -6)   
1000Daisies said...
Yep, we went down this path some time ago. Tested my kids. They were high and not high (it varied). We supplemented with BioPure Core off and on. I can't say that I contributed healing from it though. We did NOT continue on it.

Although it was NOT our missing link, I think it is something worthwhile pursuing.


Did your doc monitor copper levels? Seems like that it would be tge only dangerous side of supplementing.

k07
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Date Joined Sep 2015
Total Posts : 2548
   Posted 2/9/2018 6:51 AM (GMT -6)   


Thank you! Are you supplementing for it?

The Dude Abides
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Date Joined May 2017
Total Posts : 1157
   Posted 2/9/2018 4:03 PM (GMT -6)   
k07 said...


Thank you! Are you supplementing for it?


Hiya, k07:

I'm not supplementing for Pyroluria specifically/intentionally, as I've not been tested for it. I do seem to have many of the symptoms attributed to the condition. But, then again, many of us have symptoms that overlap with many conditions.

Georgia Hunter shared the article with me, since I developed a case of Peyronie's Disease and that's listed as a symptom/condition that's associated with Pyroluria. Fortunately, my Peyronie's is not nearly as severe as other men who suffer with it, but, it's still no picnic.

Here's what I'm currently taking, when I remember to do so:

/www.gardenoflife.com/content/product/mykind-organics-mens-multi-40 (2 daily)
/www.gardenoflife.com/content/product/mykind-organics-vitamin-b-complex (1 daily)
/www.gardenoflife.com/content/product/mykind-organics-organic-plant-calcium (2 daily)
/www.amzn.com/B0011G09EO (1-2 daily)
bit.ly/2sjK0Ad (1-2 daily)

I was also taking the following, but recently ran out and haven't decided if I should buy another bottle:

/drwongsessentials.com/zinc-citrate (1 daily)

How goes it for you, these days?

Best wishes,
The Dude

UPDATE: I just found these:

/drjockers.com/pyroluria-common-unknown-disorder
www.conqueringpyroluria.com/shop-pyroluria/pyroluria-supplements/pyrrole-support

k07
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Date Joined Sep 2015
Total Posts : 2548
   Posted 2/9/2018 4:44 PM (GMT -6)   
The Dude Abides said...
k07 said...


Thank you! Are you supplementing for it?


Hiya, k07:

I'm not supplementing for Pyroluria specifically/intentionally, as I've not been tested for it. I do seem to have many of the symptoms attributed to the condition. But, then again, many of us have symptoms that overlap with many conditions.

Georgia Hunter shared the article with me, since I developed a case of Peyronie's Disease and that's listed as a symptom/condition that's associated with Pyroluria. Fortunately, my Peyronie's is not nearly as severe as other men who suffer with it, but, it's still no picnic.

Here's what I'm currently taking, when I remember to do so:

/www.gardenoflife.com/content/product/mykind-organics-mens-multi-40 (2 daily)
/www.gardenoflife.com/content/product/mykind-organics-vitamin-b-complex (1 daily)
/www.gardenoflife.com/content/product/mykind-organics-organic-plant-calcium (2 daily)
/www.amzn.com/B0011G09EO (1-2 daily)
bit.ly/2sjK0Ad (1-2 daily)

I was also taking the following, but recently ran out and haven't decided if I should buy another bottle:

/drwongsessentials.com/zinc-citrate (1 daily)

How goes it for you, these days?

Best wishes,
The Dude

UPDATE: I just found these:

/drjockers.com/pyroluria-common-unknown-disorder
www.conqueringpyroluria.com/shop-pyroluria/pyroluria-supplements/pyrrole-support


It's going about the same, thanks for asking. How are you? I know what you mean about remembering to take stuff. Lately the only thing I'm taking is modified citrus pectin, vit d/k2, magnesium & herbal supplement for sleep.

I'm going in a million different directions at the moment so I probably need to focus on a plan of action. I'm doing my second dna connexions test next week and the results of that will hopefully drive the plan. I was negative last time but did not do the collection right. If I'm negative again then it is full go with the mold stuff as well as ruling out/in Intracranial Hypertension, KPU.

I will probably test for the KPU soon. I'd like to just supplement but I've read if your copper/zinc ratio gets out of whack it can cause some issues.

The Peyronie's seems painful! It sounds like it can in some instances go away without treatment?

The Dude Abides
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Date Joined May 2017
Total Posts : 1157
   Posted 2/9/2018 8:53 PM (GMT -6)   
k07 said...

It's going about the same, thanks for asking. How are you? I know what you mean about remembering to take stuff. Lately the only thing I'm taking is modified citrus pectin, vit d/k2, magnesium & herbal supplement for sleep.

I'm going in a million different directions at the moment so I probably need to focus on a plan of action. I'm doing my second dna connexions test next week and the results of that will hopefully drive the plan. I was negative last time but did not do the collection right. If I'm negative again then it is full go with the mold stuff as well as ruling out/in Intracranial Hypertension, KPU.

I will probably test for the KPU soon. I'd like to just supplement but I've read if your copper/zinc ratio gets out of whack it can cause some issues.

The Peyronie's seems painful! It sounds like it can in some instances go away without treatment?


Things are about the same, here, too. Thank you, in kind, for asking. Of course, since I'm not doing anything much or different, I guess I shouldn't expect much change, eh? smile

I recently got back in touch with the Hansa Center, since I now have more free time, after quitting my job. I'll be completing all the intake paperwork and will likely visit them in the coming months.

However, with no income, I'm a bit concerned about spending that much money (about $15k, in total) with no guarantee that it will help. Of course, there's no way to know if it'll help, unless I go. I don't have any other plan, since I've declined antibiotic therapy and other pharmaceuticals -- for now. I wish I had a crystal ball.

I've not done exhaustive research on Peyronie's, but have read a few sites. I've not seen that it can just go away without treatment, but, if it could/would, that would be great. As usual, the "standard of care" is drugs and/or surgery. I might consider drugs at some point, assuming nothing else works, but I have no intention of surgery! I shrivel-up just THINKING about it! ha!

As I wrote to Georgia Hunter and Lapis_29, I also have Dupuytren's Contracture and it seems the two conditions are related. I've had Dupuytren's for almost 10 years, but it's mild and hasn't really progressed much. The Peyronie's, however, only started within the past year. As I referenced in the aforementioned post, I took Systemic Proteolytic Enzymes in hopes of helping the Peyronie's, but had no luck. It did, however, help the Dupuytren's.

Anyhoo, I can relate to going in a million directions at once. I think most of us just want a plan to follow that will be doable and successful. We could likely endure much more for longer, if we just had some assurance that, in the end, it would be worthwhile and we would be better. The not knowing is one of the worst parts.

Would you mind sharing the herbal supplement you're taking for sleep? I'm taking one capsule of Deep Sleep at bedtime, along with 3 mg of Naltrexone. They help, but my sleep is still not that great.

I wish you much luck with your next DNA Connexions test. I hope it yields some useful/helpful information. Also, here's to hoping that you don't have Intracranial Hypertension. I'll keep you in my thoughts. Should you happen to feel like sharing what you find, I'll be watching for a post from you.

Best always,
The Dude

The Dude Abides
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Date Joined May 2017
Total Posts : 1157
   Posted 2/12/2018 9:12 PM (GMT -6)   
I just happened to see this comment from Dr. Klinghardt, while searching for something else:

KPU/HPU

If you give zinc and the body has a poor response to it, this could be related to MMP9 elevation if zinc tests poorly on the second visit.  Some KPU conditions are an intelligent adaptation and protective mechanism of the body.

Testing for KPU in the US is highly unreliable.  Urine is sent to Europe which takes 3 days.  The ½ life of the compound that is being looked for is 8 hours and it takes 5‐7 days for testing from time urine is collected.  There are many false negatives.

Source: bit.ly/2o64h7l, Page 5

1000Daisies
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Date Joined Apr 2016
Total Posts : 2474
   Posted 2/12/2018 9:43 PM (GMT -6)   
k07 said...
1000Daisies said...
Yep, we went down this path some time ago. Tested my kids. They were high and not high (it varied). We supplemented with BioPure Core off and on. I can't say that I contributed healing from it though. We did NOT continue on it.

Although it was NOT our missing link, I think it is something worthwhile pursuing.


Did your doc monitor copper levels? Seems like that it would be tge only dangerous side of supplementing.


No.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 2/19/2018 1:50 AM (GMT -6)   
More information I just stumbled across, while perusing SelfHacked.com:

Everything There is to Know about Kryptopyrrole and Pyrroluria (High Mauve)
/www.selfhacked.com/blog/everything-know-high-mauve

Also, something from BetterHealthGuy.com:

Kryptopyrroluria aka Hemopyrrollactamuria
betterhealthguy.com/joomla/images/stories/PDF/kpu_lymelighters_0110_presentation.pdf

Georgia Hunter
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Date Joined May 2012
Total Posts : 2132
   Posted 2/19/2018 5:12 AM (GMT -6)   


Someone has been searching my posts. lol It's hard to believe I wrote all that, it's good stuff. When you get to Hansa, tell Dr Jernigan I said hello. He won't care, but tell him anyway.

The Dude Abides
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Date Joined May 2017
Total Posts : 1157
   Posted 2/19/2018 6:50 PM (GMT -6)   
Georgia Hunter said...


Someone has been searching my posts. lol It's hard to believe I wrote all that, it's good stuff. When you get to Hansa, tell Dr Jernigan I said hello. He won't care, but tell him anyway.


I'm the self-appointed President of the Georgia Hunter Fan Club! smile

It wouldn't surprise me a bit, if Dr. Jernigan has heard of you and read your many, prolific posts! I will definitely tell him you said Hello!

Sincerely,
The Dude

President
Georgia Hunter Fan Club
Southeastern Division
Blue Ridge Mountains Chapter
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