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» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone have Dr. K's kryptopyrroluria urine test? (Page 1)

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Author Topic: Anyone have Dr. K's kryptopyrroluria urine test?
lymeparfait
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Was wondering if anyone took the urine test for

Kryptopyrrlouria?

My ND just returned from a

Dr.K seminar and wants to test me for a

defect of enzymes in the Heme molocule.

Said that 80% of Dr. K's patients who have lyme

have this newly recognized condition and have difficulty detoxing because of this?

This was new information given to those attending his recent detox seminar.

Remedy is said to be mega doses of maganese and zinc?

I will get the test next week. Lab he uses is in Keyport NJ.

Anyone have info on this?

lymeparfait

[ 03-12-2009, 07:45 AM: Message edited by: lymeparfait ]

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hoot
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Pfeiffer Treatment Center has talked about KP for years..definately not a newly recognized

condidtion. Many children with autism have this issue as well. Supplementation is high doses of

zinc and B6 (in the activated form, P5P).

Jennifer

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seekhelp
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We need GiGi!!
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Jill E.
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A couple of years ago, I had called the Pfeiffer Center in Chicago asking if I could take that test if blood were drawn locally and sent to them, because I knew I had some kind of detox problem and had read some papers by Klinghardt about it.

Pfeiffer said no unless I was a patient of theirs. I couldn't find anyone who would run the test for me although I did find a lab somewhere on the Internet when I was searching back then.

Please keep us posted on what your results are - I have been interested in this for quite some time.

Jill

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If laughter is the best medicine, why hasn't stand-up comedy cured me?

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Lauralyme
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I did it and my results were within range at 8. I believe 15 and higher indicates KPU. Guess I am within the 20% range.

However I still am taking zinc and manganese.

--------------------
Fall down seven times, get up eight
~Japanese proverb

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SForsgren
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You have to be off all zinc and B vitamins for 5-7 days before doing the test. Also, ideal to be under some stress during the week before the test. Then you do the test. It doesn't catch all cases as I understand. The best test is one in Belgium but difficult for us to do. So I did the test here and it did not show it as a significant issue but I nonetheless am likely to start the KPU protocol. It is a bit more than zinc and manganese but they are a major part of it.

--------------------
Be well,
Scott

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lymeparfait
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Thanks everyone...
Glad to know others who understand this a bit.

Scott, as you have also reported that you are currently doing the AI drops, do you think that work at that level could balance out any problems related to KPU? That I do not also need this test at this time?

Will you start the KPU protocol after fnishing the AI drops? Or do them together.

Just wondering if I should actually take this test right before I begin the drops that are being shipped tome today!

My ND does not fully understand the drops, and neither do I! I am see ingher today and will get ART to help direct me, but could use some guidance.

Lymeparfait

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Stacyb
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Scott,

Where did you get the test run at?
and what is the cost?

Stacy

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SForsgren
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There is no data on KPU and AI drops to my knowledge. I don't know if they would impact that issue.

I think the drops are pretty powerful and probably would ease into one or the other before doing both together.

As I understand after about 2 weeks on the KPU protocol, most people will feel much worse as it liberates mercury from various receptor sites where zinc should have been.

Several people feel a bit worse on the AI drops as well as it does its work.

The KPU test I did at vitamin Diagnostics and it was about 55 dollars I think.

--------------------
Be well,
Scott

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diana
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My kpu test was double the normal high end reference range. This appears to be the missing link for me. The zinc is incredibly hard for me to tolerate in high doses. I am having to start off slow. To say that I have problems detoxing..would be an understatement!

Diana

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Jill E.
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Scott,

If the KPU protocol releases mercury, are you on any chelators at the same time, and if so, which binders or chelators are recommended? My worst nightmare is releasing metals because I can't detox and they recirculate, making me much sicker - this has happened before.

Thanks for the info about Vitamin Diagnostics. That's the lab that did my methylation.

Jill

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If laughter is the best medicine, why hasn't stand-up comedy cured me?

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SForsgren
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Not chelators so much but binders. Yes, in some cases, you have to pull out almost every detox agent available as I understand.

Detox IVs (EDTA, DMPS, DMSA), foot baths, chlorella, clays, zeolites, EDTA or DMSA suppositories etc.

--------------------
Be well,
Scott

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Healing in Santa Cruz
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My Md just got back from a class with Dr K. And he wants me also to do this test. Going without supps for 5 day and then treatment sounds intense. I will be shocked if I don't have this problem.I have so many of the symptoms. Hope it will be a big piece of my puzzle.
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lymeparfait
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HOw are you dong now with treatment?
lP

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SForsgren
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It's rough. Headaches, foggy, toxic, etc. Need every imaginable metal removal option working with my doctors. EDTA, zeolites, fibers, chlorella, homeopathics, etc. Not a do-it-alone protocol in my opinion. Metal redistribution is a serious problem and one not easily fixed if it happens.

--------------------
Be well,
Scott

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R62
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No PKU protocol with amalgams in?
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lymeparfait
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Scott,
My ND does not have me on anything for metal removal!

This concerns me as she states she is using Dr. K's protocol.

I have put myself on betonite clay and psyllium, but need to know what Dr. K suggests, so I can go back to her and ask her to verify with him!

It does scare me doing this with someone who is also new at this. She did ART test me for the protocol, but there were no binders included!

NOt a good feeling for me.

Please PM me any thoughts, or send the protocol.

I will not do it on my own, but want her to see what others are suggesting!

LP

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SForsgren
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If she has you on the KPU protocol without being ready to address metals, it sounds as though she is not fully ready for the likely next phases of the treatment.

There is no protocol. Everyone is different.

I listed many of the agents above. Then after you get through this metal/toxin phase, it is reported that people get fevers, etc. as their immune system activates. I am at week 4 now. Definitely feel worse than before I started but have not reached the immune activation phase that I can tell at least...

--------------------
Be well,
Scott

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SForsgren
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http://www.drrandy.org/article.html

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Be well,
Scott

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Keebler
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-
As KPU is just one kind of porphyria - and it may be enough to investigate that - it also may be good to read about all the types at some of the links here and note that a urine test cannot distinguish all kinds of porphryia:


http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/87840?

Topic: Porphyria
-

[ 12-14-2009, 03:31 PM: Message edited by: Keebler ]

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Healing in Santa Cruz
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Thanks Scott for posting my Md's website. I thought there was a rule here about that so thats why I had peeps pm me for his addy. Thanks again Joyce
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SForsgren
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No rule that I am aware of. He's got a public site. No $$ involved. So not a problem.

He's a good practitioner and I'm glad to see that he is willing to share his information as he does.

--------------------
Be well,
Scott

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lymeparfait
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Great info. Thanks!
LP

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diana
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I have been doing the KPU protocol for a couple of months. I tested highly positive. Over double the normal reference range.

Scott is right, this is not an easy protocol. I ran into problems when I started at 200mg/zinc per day for 4 days back in January. The symptoms were way too much to tolerate and it took me months to recover.

I still can't tolerate even 50mg of zinc per day in supplement form. I experience severe cranial spasms. I am fortunate that I have easy access to fresh seafood and I am up to about 100mg a day of zinc through eating oysters (one oyster i between 8-15mg of zinc). This seems to be the only way I can tolerate the zinc. I need to work up to 200mg a day.

I also take p-5-p, manganese and primrose oil which do not appear to be a problem for me.

I am having even more structural challenges that uual since starting the protocol which I believe are due to the zinc affecting my adrenals which in turn affect my ligaments.

I have seen some positive changes already. I am off sleeping pills and my menstrual cycle has gone from 50+ days back down to 32 days for the last two months.

I experienced a period of remission for about a year from my ALL of my symptoms back in 2003. I had attributed this to other things I had done but looking back now, I was supplementing with zinc. It all makes sense now.

Diana

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Healing in Santa Cruz
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Scott, Yes my Md is a sweetie. He is so caring and shares everything he knows.He works a lot like Dr K and adds his own flavor. I am so grateful to have him in my life. I am grateful to you,also for sharing so much good info over the yrs. Thanks Joyce
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Healing in Santa Cruz
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My Md is having me ramp up slowly on this protocal,not just jumping into high doses. Adding supps a week a part. Small doses and then increasing. All energy tested. Even this is hard. I don't think I could handle the high doses right away.
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sixgoofykids
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How does the zinc affect the adrenals?

--------------------
sixgoofykids.blogspot.com

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R62
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IF the metals "protocol" involves EDTA (and does it need to involve the big guns?) then it seems one cannot address PKU without having amalgams out?
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m0joey
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r62--I wasn't aware the protocol involves EDTA. Can you link to that?
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R62
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Scott mentions EDTA above.
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lymeparfait
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Has this protocol made anyone extremely tired or gave them very sore lungs?

Can your body start to do extreme detox afater you begin this protocol, or does it take long?
LP

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SForsgren
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EDTA is not part of the KPU protocol. However, as stated several times, the KPU protocol frees up heavy metals in the body. EDTA is a commonly used treatment for heavy metals. So it is treating the cascade of events that happens as a result of the KPU protocol - but is not itself a part of it.

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Be well,
Scott

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R62
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So it could require more heavy duty binders.. ??

What would be worse? Untreated KPU or treating it with amalgams in?

Thanks...

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SForsgren
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Good question. Don't know. Dr. K generally won't even see patients that still have amalgams so for most, this is a very first step of treatment.

--------------------
Be well,
Scott

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R62
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DIfficult to do when my doctors and biological dentist have nixed the amalgam removal because of detox issues... I'm guessing address basic genetics & function (metylation, glutathione), dysregulation, detox pathways (including parasite as per hulda clark, then amalgams, then PKU.. ?? Probably a see as you go deal.
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lymeparfait
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Would it be wise to do the Hulda clark while doing the KPU therapy?

I am having intestinal blockage from somewhere, constipation and lighter colored stools that do not move regularly. And edema. I hear this may be a sign of a liver detox problem?

Don't know if this is because of the KPU therapy as I was more regular directly before beginning, but it has been like this off and on for most of my life. Not a new thing for me, just happening very badly since starting KPU.

I am using progurt as well, and it has not helped this issue.


any thoughts?

LP

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sixgoofykids
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I've been a little constipated, too, but attribute that to binders. I'm going to try fewer binders and more magnesium for a few days and see. I've been doing regular coffee enemas since I started KPU because they help me so much with detox. I've gained three pounds .... must be edema/constipation as my weight is pretty consistent normally.

R62, it seems to me, and this is just my thought, that you could do KPU with amalgams. It's not chelation ..... it moves metals in your tissues ... so I'm thinking, it shouldn't be a chelator that pulls mercury out of your fillings. Again, just what I'm thinking.

Lymeparfait, it is making me tired .... I took a nap yesterday, which I never do. I am also getting more tired at night when it's bedtime (which is a good thing). Last night, after a week and a half of KPU, I remembered several dreams. [Smile]

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lymeparfait
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six-
I too have been extremely tired, at odd times in the day.

Also, I have remembered dreams for the first time in many years.

I cannot fit into my jeans...this is getting bad!

I feel puffy!

lp

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sixgoofykids
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Haha, I already had trouble with a couple pairs of jeans, so I have to go buy new ones. I had lost 15 pounds with Lyme, after a year or two, gave away all my 'big' clothes, then finally as I've gotten better, gained the weight back (which is a good thing, I'm thin even with the 15 pounds, but I certainly don't want more).

R62, just another thought, if having this condition can give you detox trouble, which from what I've read, it can, then perhaps correcting this will help with detox.

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sixgoofykids.blogspot.com

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m0joey
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It seems like there is never a bad time to do Hulda Clark, as long as your body can handle it.

I plan on doing liver flushes followed by coffee enemas every 2 weeks once I start ozone. A liver flush seems like the best thing we can possibly do to keep the gunk movin along

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sixgoofykids
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Joey, do you do the parasite or kidney cleanse before the liver cleanse? I was looking at the Hulda Clarke website .... it seems so complicated to do all those other cleanses first that I've never done the liver cleanse.

Do you do it exactly as stated on the website?

--------------------
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m0joey
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I posted this on my ozone thread already, but my doc tested me for liver flush and said I need to wait another 3 weeks before I do even my first liver flush.

apparently this isn't something to be done on a whim.

I have read that the parasite cleanse should be done before liver.. not sure about kidney.

Dr. Pressman says the parasite cleanse is essentially wormwood, green hulls of black walnut, and cloves. Everything else is "window dressing."

Dr. Forrest (of Forresthealth.com) uses freeze dried garlic for his parasite cleanse. I take this 3x/day already, so on top of this and the Super W blend (wormwood) I took for 3 weeks, I'm too worried about the parasite cleanse.

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m0joey
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Here is the Lyme 2009 and Kryptopyrolluria (KPU) Protocol, as delivered at the Northwest Naturopathic Conference, April 25-26, 2009

The full presentation is here: http://www.klinghardtneurobiology.com/LymeKPUprotocol.pdf


a.m. before breakfast:
Zinc 250 mg/day for 3-4 months (picolinate, gluconateor sulfate)
Later in the treatment less zinc may be needed for maintainance
Manganese 10-30 mg/day

with breakfast
Arachidonicacid from Omega-6 oils: evening primrose, ghee, borage oil,
black current oil

p.m. before bedtime:
P-5-P 50 mg, B 6 25 mg
Magnesium 600 mg
MicroMinerals1 tbsp (BioPure)

psychiatric symptoms: Niacinamide1000 mg tid

brain: seizures, fog, memory loss: Taurine500 mg tid.

skin/hair/nail symptoms: Biotin,

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SForsgren
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You can get most of it in one pill called Depyrrol except for the O6.

--------------------
Be well,
Scott

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R62
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Thanks, Six and thanks for the links and info Joey and Scott.

I am giving up or moving up and getting zyto and getting full testing blood or zyto.

Metametrix GI Panel, PKU, Complete methylation panel.. all of it. I am tired of chasing remedies without a focus.

I'm still using antimicrobials, but carefully. If a herx goes bad (as last one did), I am cutting back and going on maintenance which is probably what I should be doing anyway until I figure this out. I dont dispose of toxins well.

[ 05-06-2009, 01:30 AM: Message edited by: R62 ]

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sixgoofykids
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Sounds like a plan R62!

I use the product Scott mentioned. I am remembering dreams again after a week and a half. My husband said I am noticeably less anxious (I didn't even know everyone else considered me to be anxious!!! I guess I've been this way so long, I didn't recognize it myself).

I also am noticing that some of my other psych issues are decreasing. Both my parents are OCD, and I've consciously worked on not doing OCD behaviors since I was about 10 and I recognized how useless the behaviors were but felt drawn to them. I am not having to fight it anymore, it's just not there, or the tendency to live in my imagination as much anymore. I guess I didn't realize I was a crazy person, LOL.

So, I'm seeing a real difference with this treatment, and so is my family.

I feel bad though. I'm a bit achey. I'm tired. I certainly am not feeling better with it, it's tough. I am not doing any other treatment right now other than detox.

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SForsgren
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I need it to start improving my OCD [Smile] So far, still an issue. Probably Borna virus.

My aches and soreness, etc. are increased since starting as well. I think that's mild compared to the crashes that some face when doing this protocol - especially without a doctor.

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Scott

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sixgoofykids
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I know, I know, I should have a doctor. The closest I've found thus far is Chicago, and I've considered going there. It's the Pfeiffer people ... the one that did a lot of the research on Pyroluria.

I'm concerned even more for a couple of my kids who show more symptoms of this than Lyme. Let's just say, Pyroluria would explain a lot in regards to my family history. [Smile] When I read the "typical" pyroluria patient descriptions, there are very few symptoms I don't have.

I'm really amazed at how much this has helped the psych symptoms. I generally tried to hide these types of symptoms, and they are so unmeasurable that it's hard to describe here, I can just say that the difference inside my head is dramatic.

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R62
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How do you find a doctor to help with this? It is bewildering how little some doctors know. I dont mean to sound negative, but its getting where I am moving though doctors like water.

I would not doubt at all that this is an issue for me. I also hear what you are saying, Six. One little round of minocin pulled a layer of psycho off of me and it was like a dark cloud had lifted. OCD, depression, anxiety... a nice layer lifted and it was like I had forgotten what it was like without the cloud. That said, I know there is more to go. Thank you for the supportive thoughts.:-)

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sixgoofykids
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I wish I knew R62. I've been trying to find one near me, too.

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sparkle7
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FYI -

This info may be helpful -

http://www.bioraynaturaldetox.com/uploads/DetoxWithoutaCrisis.pdf

http://www.bioraynaturaldetox.com/PublishedArticles.cfm

(I don't sell this product. I am going to try the NDF Plus when I get my liver in better shape. I can't tell anyone if it works or if it's a good system.)

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Healing in Santa Cruz
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I used NDF and then NDF plus years ago. This was after I had all my merc fillings taken out. This is before I knew I had lyme and co. It was extremely harsh for me. I finally stopped.Very strong stuff. So go slow until you know how your body will do. I started with 1 half drop.
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lymeparfait
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How far into the treatmet was it for you when you first started feeling the "harsh" symptoms?
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SForsgren
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5-7 days for me

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Scott

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I was sick with a cold when I started, so I already had some bad symptoms. So for me, it just felt like I never pulled out of the cold fatigue. My worst symptom is fatigue, with some acheyness.

The big question is, when do these symptoms start to let up?

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SForsgren
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Probably different for everyone and probably has as much to do with how much the practitioner is supporting the detox and metal removal. Weeks or months depending.

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Scott

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Healing in Santa Cruz
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I was already not feeling well when I started.4 days after starting protocal, symptoms started to get worse. Then there is symptoms from lyme and co.I am extremely exhausted and feel like I am drugged,among pain.One good thing is my anxiety is way better.
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sparkle7
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There's alot of info on the BioRay site about detox in general. If you've had fillings for a long time - it's probably going to take a while to get the mercury out of your system.

According to the BioRay site - almost everything has some mercury in it - even cucumbers & other veggies, chlorella, etc. I think I read recently that fructose or corn syrup has alot of mercury.

It's really tricky with all of this. Seems like this detox is going to be a lifelong process which ever way you go. Heavy metals & mercury are everywhere.

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n.northernlights
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Here is a dutch site : http://www.hputest.nl/english.htm http://www.hputest.nl/ewhat.htm and there are lots of german sites.

There are at least two forms of pyroluria, genetic or caused by stress or something.

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sparkle7
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I forgot - thanks for posting about this & for all of the info.

PS- There's alot of good info here, too -

http://www.allnaturaladvantage.com.au/heavy_metal_toxicity.htm

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hiker53
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Scott,

May I politely ask if KPU was not a significant issue for you, why are you dong a protocol for it? Just curious--not slamming you.

Hiker53

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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sixgoofykids
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For those of you on the protocol .... I did a Hulda Clark liver cleanse and feel much, much better. I was hoping it would help, but it helped more than I had hoped for. This was my first time doing the cleanse. Not to get off topic ..... just wanted to let you know in case it might help you.

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Cass A
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Dear Friends,

A very good friend of mine who has done a lot of research on alternative medical issues wrote a long article some years ago about ZINC being a major factor in post partum depression and many other psychiatric problems, including schizophenia.

HOWEVER, taking a large dose of Zinc suddenly, instead of ramping up very slowly, can cause very, very, very serious reactions!!!!!

There is a liquid you can take to test your own zinc situation. It's called ZINC STATUS from Ethical Nutrients. The directions are on the bottle.

It also can give you a very SLOW way to move up with Zinc instead of banging up to 250 mgs right away!

Hope this helps!

Best,

Cass A

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lymeparfait
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Six,
did you stop your KPU protocol to do the cleanse?
And was this the two day version or the longer H.C. cleanse.

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I didn't take the KPU protocol on the day I began the cleanse, but I started right back on it when I could start eating again the second day, so I only missed one day. It was the two day cleanse .... the one that you start on day and finish the next morning.

I'm still feeling great after the cleanse. Amazing.

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lymie_in_md
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Six -- That is great news, I'm very happy for you. You may want to plan another in a couple of weeks unless you feel this cleanse did it all. You'll know if you feel worse in a couple of weeks. whether to do another. Sometimes some of remaining, I call it sludge moves from the back of the liver forward and again clogs things up. I did four and feel I'm completely cleansed of all liver issues.

Since I've cleared the liver, I test a strong need for magnesium and candida killers and lots of photons. Keep the idea of magnesium supplementation after you feel the liver is clear.

Good information about zinc Cass. I find a more natural way of increasing zinc is pumpkin seeds. I get papitas from a nut store close by, I grind them up in a coffee grinder and take two tablespoons in my cereal in the morning. You could also use it in a salad as well. Pumkin seeds are naturally high in zinc content, several other important nutrients and fiber.

--------------------
Bob

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sixgoofykids
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Thanks, Bob. I plan on doing another in two weeks. I won't wait a day longer as I can't wait to do it! [Smile] I had an unbelievable amount of stuff come out, much like you had described to me only all peas, no grapes.

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lymie_in_md
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Six -- Because of energetic testing I found using bile salts (also thanks to Sparkle for having me look into it further) after you've complete the cleanses helps to rebuild bile in the liver. There have been studies showing that when bile is normalized in the liver it sanitizes the small intestines to the right amount of flora. Bile is the secret to reducing candida in the small intestines. Once candida is removed from the small intestines the large intestines have a greater chance to rebalance its flora as well. It could make probiotics much more effective especially progurt.

When I have time I'll post studies but it would probably be best in a new thread.

An interesting thing about bile, it helps metabolize fats and proteins as energy to be used by the body. If there is too little well where does the energy come from. But another fascinating thing about bile, it doesn't just leave the body, if the small intestine is totally rebuilt the bile is removed and recycle back to the liver. So bile is recycle all the time at about 95 per cent. So, by using bile salts, you rebuild the bile function of the liver over time.

--------------------
Bob

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sixgoofykids
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Where do you get bile salts?

Interestingly enough, I don't have candida issues. [Smile]

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sparkle7
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Sorry for the hyjack....

You can get them on the internet or at a vitamin store. I haven't tried them yet since the store had to order them. I have to go back there to pick them up. Glad it's working Bob...

-----

Bile Acid Factors (333mg) Description from JARROW

Bile Acid Factors consists of a mixture of highly concentrated bile acids (also called bile salts), mostly in the conjugated form, from U.S. and/or New Zealand bovine/ovine bile.

-Bile acids are produced in the liver and then stored and concentrated in the gallbladder, from which they enter the small intestines via the bile duct.

The major bile components in Bile Acid Factors are glycocholate and taurocholate, which are crucial for fat digestion and absorption.

-In the small intestine, bile acids emulsify fats to aid their absorption. Bile acid deficiency causes fat malabsorption and fatty stools (steatorrhea), indicated by diarrhea and floating stools. In addition, bile acid deficiency jeopardizes a person's nutritional status by reducing the absorption of fat and fat-soluble nutrients.

-Conjugated bile acids have been shown in clinical trials to be effective in improving fat absorption and nutritional status.

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Cass A
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Dear Friends,

Wow! This really is a fascinating thread!!

With Scott pointing the way, I did some research today on kryptopyrroluria and its handlings. Googling pyrole and manganese brought up some great info!

As for the current twist of this thread, to bile and digestion, according to my LLMD, the simplified 5 methylation factors plus chlorella are to help with bile production, so that the gunk actually gets OUT of the body!

I have taken bile in the past--perhaps I'll do it again, as part of the detox!

Best,

Cass A

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sixgoofykids
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Scott, you mentioned an immune activation phase. Will this include feeling like you have a virus?

I am feeling tired, have a sore throat, and a little post nasal drip. Since I've already had the latest cold that went around, I'm wondering if this has to do with the immune system kicking in.

I also had my babesia flare a little with a sweat last night and some minor air hunger today. I have had no air hunger in about a month, and no sweats for several months. Right now I just can't wait to go back to bed .... and I've been feeling really good the past week or so.

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SForsgren
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As I understand, it can include fevers and fluish like feelings as the immune system starts to improve and addresses backlogged infections. I've been on it for six weeks - have observed much more metal and toxin issues requiring binders, but have not had any clear immune activation yet.

--------------------
Be well,
Scott

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sixgoofykids
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Yes, I'm feeling fluish and feverish, though I have not taken my temp. I think my immune system is activating .... I don't feel like metals are being released, though I did before .... I'll keep up with the binders, but this feels more like the fluish, immune stuff.

My LLMD always thought I reacted to any herbs/meds he gave me (or my daughter) much, much quicker than the norm. At one appt. he kept telling us that over and over .... "You are not the norm." It was like he really wanted us to understand that, so it does not surprise me that I'm reacting to this treatment so fast.

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sixgoofykids
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Immune activation also fits from the healing reaction theory perspective. I felt really, really good and was thinking that the toxin release from this treatment had ended.

Typically a healing reaction kicks in when you're feeling your best because the body is strong enough to handle it. Fun.

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