Topic: Anyone have Dr. K's kryptopyrroluria urine test?
sixgoofykids
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Yeah, but how do you find one who will?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
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I'm not being flippant, I seriously want to know. I never even found a doctor who would work with my LLMD. I can't find anyone here to help me with any of this ..... I would LOVE to know how to go about finding one.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Six, Would your LLMD be open and willing to learn about this protocal? I am also concerned about people doing this without a Dr. If this protocal helps a lot of people, many more Dr's will be doing it, hopefully.
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ping
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[QUOTE]Originally posted by sparkle7: [QB] ping - There are people here doing it on their own. You are not the only one.
Sparkle7 - Thank you so much. Hang in there. I can't afford too much MD either; after 5 yrs. hard-core abx and 2 yrs. maintenance abx, time for me to detox and find out what's going on.
Thanks again!
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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sixgoofykids
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Healing, that is a good idea for me, but I am more concerned about getting my kids tested at this point. I live in Ohio and my LLMD is in NY. I haven't had an appt. since last Nov. when I got back from Germany (they said to call to set up an appt when I needed one, but as long as I was doing well, I didn't need to call).
It's easier for me to take them to Chicago than NY and my past experience with my LLMD is that he's marginally open to new ideas that I might bring up, it would be a really tough one to get him to do, I believe.
Thanks for the idea.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sparkle7
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ping - I know it's difficult but it can be done. I wasted too much time on doctors who didn't know what they are doing plus I went through all of my savings.
I have been ill for 13 years. For 9 of them I didn't know I had Lyme... Since I have been ill & not able to work much, I have spent years researching how to get well.
Everyone is different. We have to be cautious about what we do but for me I have been so ill that I needed to do something, anything...
I experimented on myself & sometimes it was harsh & I became very ill. I think I've finally cracked it, though. I will know more in time.
Everyone is different & we need individualized treatments. I can't tell others what to do. They may have a completely different constellation of symptoms than I do.
I'm not sure how dangerous this kryptopyrroluria situation is. I'd have to research it more thoroughly.
I believe that if we are very careful, we can successfully self treat.
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ping
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Sparkle - It's terrible that Lyme pts have to be so desperate for help. I'm fortunate because, as the guy in the movie said, I found docs that soaked me in abx else I wouldn't be here today.
As for kryptopyrroluria, I'm not overly interested in it at this time, more interested in plain, ordinary detox. I also understand the experimentation principle, as no one is going to care for you more than you; that's just the way it is and I wish you complete success.
Please touch base with me from time to time; PM or otherwise post. I'd like to know how you're doing.
Hang in there, friend.
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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sparkle7
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Yes, I did the abx for about 8 months but they were making me too ill. By then, it was probably too late. I'd already been ill for 9 years (at least).
Some people tough it out with abx but I just didn't feel like they were really going to do it for me.
So, I keep trying different things to see what will help. It's sort of like peeling an onion. You just have to get through the layers of dysfunction - genetics, epigenetics, toxins, pathogens, toxins from killing pathogens, mercury... It's a long & winding road.
Hopefully we will all get through it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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How would a doctor monitor PKU therapy? Testing for which metals are released and how to best chelate.. and provide proper chelation?
Scott..
I've been told by all three of my doctors, including the chelation specialist that I am not ready to hav my amalgams removed. This might change now that Myers cocktails and glutathione IVs have helped my tremors go away.. ?? I would hope Dr. K would provide initial support for people like me..
I am grateful for what I have and spent a lot of time finding the people I have and they are not well known LLMDs.. one is an open minded GP who is familiar with lyme, another focuses on preventative med and IV therapy and another an alternative who is somewhat lyme aware.
Non of them is PKU literate. I bet you can put the number of doctors who are on the head of a pin. This is scary for some of us. Maybe the doctors who are will put out more indepth info so we can share it with our doctors,,, the ones who are open to it.
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sixgoofykids
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R62, I cleared it out.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Is anyone with darker skin doing the protocal?
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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sixgoofykids
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From what I've read, if a person has darker skin, they will likely be one of the lighter ones of their family. So, I person who is black can have it, but chances are he/she will be lighter colored than the others in his/her family.
I'm the palest in my family. My mom is pale. Three of my kids are pale. Not dark here .....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks six, now I remember reading that somewhere.I am very pale also.Just asking for people I know with dark skin that have lots of symptoms. How are you doing? Actually, how is everyone doing?I have been in lots of pain and extremely exhausted. My MD gave me a Meyers cocktail w/glutathion, yesterday and it really helped.What a relief.I am still ramping up on small doses. My Md has quite a few peeps that have tested positive. I bet there are more than we can imaging that have KPU It affects lots of chronic illnessnot just us lymies. Healing Blessings Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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SForsgren
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I'm finding it definitely shakes things up. Have felt that metals and other toxins are really stirred up with the KPU protocol - exactly as I was warned. Hopefully, down the road, the benefits will become more evident.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymeparfait
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I am medium skinned and tan..not burn in sun. But did test positive for KPU.
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posted
I agree Scott. And yes, benefits will be wonderful.Hope they come soon. Thanks Lymeparfait. How are you doing? I have also found that Organic Boneset tea is helping a lot with symptoms. Read about it in Healing Lyme by Buhner Good for Bart Babs,colds & flu.Its a pretty bitter taste but helps so much pacificbotanicals.com 541-479-7777 I receive no $ from this company.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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posted
My zyto has this as not a pressing issue, thank goodness. Guess that doesnt mean it wont become one.
Posts: 861 | From USA | Registered: Dec 2008
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posted
R62, Confused with what you wrote. What is Zyto, and what is not a pressing issue? KPU? I'm a bit in la la fog land. LOL
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Zyto is a form of Electrodernal Screening (EDS). Its like computerized kinesiology.
My numbers were below the level of concern.. which means it is not registering as an possible issue to day. The only way to really know is to do the urine test and I would if it was registering in the more concerning numbers.
When my son was muscle tested, babesia came "energetically." It also came up as not needing treatment.. could be he carries it, it is under control my his immune system, its not stressing the body. The zyto picks up on what is stressing the body or what zyto calls "stressors."
I dont know how it was programed to pick up KPU.. so I dont know what the "reading" means excactly.. I do know the zyto revealed I have more issues than I knew (well I knew I had huge gut problems and suspected it) and that as long as KPU is not showing as as significant stressor, I have enough on my plate otherwise like fixing my wrecked gut and looking into brucella as a possibly problem. Never tested for that one. It was higher than Bb.
Maybe someone will come along who can explain better than me.
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sixgoofykids
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I'm doing well on KPU. It seemed relatively easy for me to adjust ... don't know why. I seemed to have a detox reaction for the first couple weeks. That let up and I felt great for about three days, then my immune system kicked in. I had symptoms of many different viruses - runny nose, throat hurt, body aches, diarrhea, stomach ache, etc. Stuff you don't normally have all together.
That lasted several days then I felt better.
After three weeks on the protocol, I started Humaworm. I wanted to start it as soon as I could because it makes me feel bad and I wanted to have as many weeks of it under my belt as possible before the kids get out of school. So, I feel bad again.
I did another liver cleanse yesterday/today so I'm just pulling out of that. The first one I did had amazing results as far as helping with symptoms of being on KPU treatment. Today I was shocked at all the sludge. Hopefully, this will help with the detox I need for the Humaworm.
The biggest change has been emotionally. I've mentioned it before. The other day my husband and I were in what normally would have been an emotionally heated argument, but it was just a discussion.
After it was over he said it was the weirdest thing. He said he couldn't believe I didn't get upset, that whatever these supplements were that I'm taking, it's really made me different, noticeably different.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymeparfait
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I dont seem to be having any symptoms from the KPU protocol yet. At first I had a few days of leg pain, but it went away. May not be related to KPU.
I still feel that I am not detoxing. I have been feeling very inflamed, but this has been going on for several months. Those feeling have not subsided.
I did a HC liver flush, and did get constipation relief after...and still ok now.
Also doing the AI drops...but no reactions during or ending this round #2.
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lymeparfait
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How is this going for everyone?
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sixgoofykids
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Great for me. I seem to be through the worst of it. I am feeling better and others have noticed the changes in me emotionally. I'm a lot less anxious and handle stress better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I have been having some rough days,but today seems a bit better.I slept 10 hours which probably helped. I am still slowly ramping up my dose. Still on small doses that are still rough. I cannot imagine me taking the big doses everyone else is doing. I just listened to the cd that Scott posted of Dr K and it is very good.Glad I bought it. Its called Treatment for lyme without abx Lots on KPU. From Apr 24-26 convention 1-800-468-0464 or www.treefarmtapes.comPosts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Forgot to say, every time I increase dosage symptoms get intense. I hope more people will look into this. I think I suffered a lot do to the KPU problem.Never ending herxes for 4 yrs. Actually 27 yrs but worse the last 4 yrs.
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Healing-what dosage are you up to? Are you referring to just the zinc a being a problem to tolerate?
Diana
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SForsgren
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I'm on 210mg of zinc and definitely the pot is being stirred. Energetically, I am still in the metal and toxin dumping as a result but also infections are testing strongly now which suggests that I am moving into the immune activation phase as anticipated. Will take more time to really see how this goes. Proceed with care and caution. It is not an easy protocol.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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SForsgren
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sixgoofykids
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Woohooo!! I just found a chiropractor who will work with me on this! He thought I'd be an interesting case. He'll test my kids, too!! (He can do all the blood work).
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hi Diana, I am doing under 50 mg of zink, B6, Pyr-5-phos,EPO,Manganese along with a multiple vit mineral,E,and my Cal mag C has some zink and maganese. This has all been energy tested for me. I feel its the whole protocal that is rough. I am also taking Niacinamide for anxiety. I felt pretty bad again today. Coffee enema and foot bath helped,also Reflexology. All I do myself Six,so glad you found someone to help you and kids.Take care everyone Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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lymeparfait
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I went off while doing the liver detox, now starting back on the protocol. Anone else take a break then start back? Am I in for problems by taking this break? lp
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Keebler
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-
Scott,
Thanks so much for Klinghardt's link. And, I'm glad to see it's pretty easy. Since kryptopyrroluria is a secondary coproporphyrinuria (one category of porphyria) I've added this thread and that link to the Porphyria thread below.
Here's a link for a full range of the porphyrias.
If porphryia is a concern, a urine test may not be enough and can miss some forms of porphyria. But porphyria tests are very tricky and anything along the way to help identify these problems with liver metabolize are welcome. If more information is needed:
posted
Hi Lymeparfait, I remember, I asked my MD if this protocal could be pulsed, and he said no. I didn't go into it further. I am having a pretty rough physical and emotional day and would sure love to take a break.Stress is not helping. Going to see if my md can give me a glutathion myers push to relieve some of the pain etc. Did you feel better when you stopped the protocal? Joyce
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sixgoofykids
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I wouldn't think it could be pulsed. If we really have this, then our body is deficient in these vitamins/minerals/EFA's. It would be like one of us who is anemic skipping their iron.
However, when I do a Hulda Clark liver cleanse, I do not take the minerals that day, nor do I take my iron. I do take them the second day once I start eating solid food again.
Hang in there, Joyce, when you get through, you'll be amazed!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Thanks Six. Waiting to be amazed. 27 yrs of hell is enough.
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sixgoofykids
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Yah, I know ..... been sick a long time myself. It's WEIRD to be feeling well. It's even weird to my husband, who continually asks if I'm okay because he thinks I should be crashing being busy day after day all day long.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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SForsgren
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Get your zinc and copper levels tested soon. You don't want to ignore that.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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sixgoofykids
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Scott, I recently came across this website for Depyrrol in English. The Depyrrol has 210 mg of zinc gluconate, but that only translates into 30 mg of elemental zinc, which is still within the tolerable upper intake levels according to the NIH. I was pleased to discover this info.
It might also explain why I kept "craving" two pills, but when I only took one, I craved pumpkin seeds instead. Now I'm craving neither, but for three days I thought I was going to start growing pumpkins out my ears.
posted
Six, I am sure that must feel weird to feel so well. I get a taste of it every once in a while. Its like the real me pops out,no pain,no exhaustion,emotions level, happy,hopeful,positive I actually laugh which surprize's me,I don't laugh much anymore,eye sight better. This only lasts a few hours,longest was a day.Has not happened in a looooooong time, sorry to say.What a journey. Nice to connect with you. I am happy for you,gives me hope. Joyce
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SForsgren
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I've actually asked that of my practitioner, and they indicated that the 210 in Depyrrol was the correct amount for KPU. So it is still a high dose as I understand. I'll revalidate.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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sixgoofykids
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Yeah, it's high, but it's still within the limits of "safe", the NIH talks about copper deficiency at higher doses .... up to 40 mg per day is safe for someone older than 19. We need to keep in mind what's in other supps, but I'm not on much else right now and nothing else with zinc.
I'm just glad the correct amount IS within "normal" range .....
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Scott,Were you meaning me or Six to get zink and copper tested ? Thanks J
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Brussels
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Hi guys, I'll be starting on the KPU soon too... I still keep testing for 'no need for zinc, no need for manganese', but if I re-state the question to 'do I need zinc to help me detox heavy metals' I get a strong yes...
My doc tested for all ingredients of the KPU protocol and they all test as helping me detox...
So there I go.... ---
Just a question, there are 2 types of Depyrrol, one is Kind (for kids) and the other is Plus (which my doctor suggested for adults).
Plus contents are approximately double from Kind (except for magnesium, that is almost 3x for adults).
Are you all on Plus?
--- Is there a place where I can buy both Depyrrol Plus + Vit B12 (METHYL cobalamin)? Or do I have to shop in different shops?
Thanks!
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Brussels
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I found a shop, no need to write... it's webvitaal.nl.
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SForsgren
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Was referring to Six, but anyone on it should be getting tested.
I am on Depyrrol "Basis". The zinc is about the same in both I believe between Basis and Plus.
posted
Hi R62, Wish I could help you, but I did not do the lab Dr K uses.My Md took my sample in his office and Quest Picked it up and sent it to Bio-Center Lab in Wichita, Ks. Test was covered by medicare. My info says if test is borderline & you have symptoms u should definitely try Pyroluria for 6 weeks. It may be that u need a lower protocal or your stress level was exceptionally low at time of test.IMPORTANT Do not take B6or zink 1 week before test. No caffeine for 24 hrs. Joyce
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