My husband and daughter's KPU results just came in the mail.
My daughter's was an 8, which I understand is in the normal range (1-10). Is that right?
My husband's was 15, which I thought was borderline (11-20), and can sometimes be helped by tx.
The results stated that 15 was normal, so I am confused.
My son's and my result have not come yet.
We have more symptoms, so we'll have to wait and see what ours say.
Does anyone out there have a similar result and what kind of tx did your md recommend?
Thanks.
Linky
[ 07-29-2009, 06:20 PM: Message edited by: linky123 ]
Posted by Lauralyme (Member # 15021) on :
My KPU result was 8 which was well within range.....being below 15 but my LLMD is treating me regardless. He said we are so deficient in zinc that we will need to supplement zinc for years.
Posted by bettyg (Member # 6147) on :
what does KPU stand for; neuro lyme acting up.
linky, lymenet will NOT let me open your pm you sent me tonight, so i'll have to get back to you when they fix this specific problem area.
i could read it in my home email box; interesting!! god's country is right on that part of the state.
so that's why you haven't heard back from me ... Posted by linky123 (Member # 19974) on :
Hi Betty,
KPU stands for kryptopyrroles. If a person has
pyroluria, they will lose KPUs through their
urine, resulting in zinc and B6 deficiency.
Thanks
Linky
Posted by Healing in Santa Cruz (Member # 7798) on :
Which lab did you use? My test was positive,but many people with neg results are are still doing the protocal. Every once in a while almost all my symtoms lift then I get slammed again. I am having a great morning. Gives me much hope. Its been a loooooog hard 27 yrs,also with lots of blessings and learning. Joyce
Posted by bettyg (Member # 6147) on :
linky, thx for the explanation.
could you copy the entire name and show it in subject line for others not familiar like me? thanks so much my new friend
just click on pencil, 3rd icon to right of you name for subject and text to add/delete, etc. big thanks.
we use too much of abbreviations and we have just too much lyme fog and no comprehension to understand.
Posted by SForsgren (Member # 7686) on :
Did you do the 24 hour collection? Did you stop all B's, zinc, etc. for 5-7 days beforehand?
You need to follow the collection guidelines here:
The test also does not catch everyone that has the condition. There is a better test in Europe but hard to do that one here.
Mine from VDiag was also in range, but I started the protocol and I have felt shifts from it though still have more road to travel.
Posted by bettyg (Member # 6147) on :
santa cruz,
could you break up your long paragraph into 4-5 short paragraphs and double space between each paragraph; huge thanks
just click on pencil to right of your name hugs
Posted by linky123 (Member # 19974) on :
We used the Great Plains Lab, as instructed by the md.
No, we did not do the 24 hour test, just used the first urine in the am.
Yes, we stopped all supplements, B6, zinc etc. at
least a week before the test.
We even had to take our son off his Bactrim, as
sulfa drugs can cause problems with the results.
I understand that sulfa drugs are contra-
indicated if you do have the illness.
I just hope we haven't screwed up his tx. by
taking him off his meds, but we felt we had to
confirm or rule out the pyroluria, since we have
so many of the symptoms.
We still have one more result to come, then will
talk to the doctor about the results. The lab
will also make an appt. to let you talk to the
chemist, which will be quite helpful. I
believe it's included in the fee for the test.
Thanks for all the input you guys are a great
support system for us!
Linky
Posted by R62 (Member # 18531) on :
Besides VD, what are the other labs that test for KPU and do the test right?
Thank you.
Posted by brooke (Member # 16606) on :
LabCorp also offers the test. I don't know if they are as reliable though. I have to get this test done and have been debating whether to use them or Bio-Center Labs.
brooke
[ 07-31-2009, 10:25 PM: Message edited by: brooke ]
Posted by Healing in Santa Cruz (Member # 7798) on :
I used Bio-labs and mine was positive. I have heard of negative results from all labs. Some with negs are still doing protocal. They are having symptoms like me so it seems clear they have Pyrroluria.
Posted by brooke (Member # 16606) on :
Do you remember what the total cost was through Bio-Labs?
Thanks,
brooke
Posted by linky123 (Member # 19974) on :
Brooke,
I think Bio Labs charges about 50.00 for the pyroluria test.
They call it the pyrrole test. I hear they have a good reputation.
I did not use them though, my md told us to use Great Plains Lab.
First morning void or 24-hour urine collection Chromatography uniquely separates three precoproporphyrins and coproporphyrins I and III Pre coproporphyrins reported separately and total precoproporphyrins expressed per uroporphyrins
Urinary porphyrins are oxidized intermediate metabolites of heme biosynthesis and have been associated with genetic disorders, metabolic disturbances/diseases, poor nutritional status, oxidative stress, and high level exposure to toxic chemicals or metals. Specific urine porphyrin profiles are associated with high level exposure to mercury, arsenic, lead and some toxic chemicals. Precoproporphyrins are reported separately and per unit uroporphyrin to increase detection even when heme production is very low.
Urinary porphyrins are oxidized intermediate metabolites of heme biosynthesis and are readily excreted in excess when porphyrinogens accumulate as a result of inhibition of specific enzymes in the heme biosynthetic pathway. Heme is required for oxygen binding, transport and utilization, cytochromes, and electron transport in mitrochondira. The high rate of production of heme facilitates the use of urinary porphyrins as early and sensitive biomarkers of disorders in heme production, and has long been associated with genetic disorders, metabolic disturbances/diseases, nutritional status, oxidative stress, and high level exposure to toxic chemicals or metals.
Specific urinary porphyrin profiles have been associated with very high levels of toxic metals such as mercury (Hg), lead and arsenic. Mercury specifically inhibits two enzymes in porphyrinogen metabolism: uroporphyrinogen decarboxylase and coproporphyrinogen oxidase (CPOX). Inhibition of those two enzymes, particularly in the renal cortex, results in accumulation of pentacarboxyporphyrinogen and coproporphyrinogen III. Oxidation of the abnormally elevated porphyrinogens results in elevated urinary levels of total porphyrins, pentacarboxyporphyrin and coproporphyrin III. Recent research has identified an additional abnormal porphyrin in the urine of Hg-exposed dentists and also in rats fed very high levels of mercury for extended periods of time. A third Hg-associated porphyrin is most commonly referred to as ``precoproporphyrin'' as it elutes after pentacarboxyporphyrin and before coproporphyrin I. The recently described precoproporphyrin has yet to be characterized with respect to molecular identity and appears to be elevated in Hg exposed individuals who carry a variant of the CPOX gene (CPOX4 polymorphism). Research at Doctor's Data, Inc. has identified three separate precoproporphyrin peaks. Since knowledge about the Hg-associated precoproporphyrin entities is limited, we report the levels of all three peaks separately, as well as the total, for research use. Since uroporphyrin levels are not known to be affected by Hg, we also report the total precoproporphyrins-to-uroporphyrin ratio to increase the sensitivity for detecting abnormalities in individuals with low heme biosynthesis as may occur in children with nutritional deficiencies and/or autism.
Arsenic exposure has been associated with elevated levels of uroporphyrins and coproporphyrin I, and an elevated ratio of coproporphyrins (I: III). Lead exposure has been associated with elevated levels of coproporphyrin III.
Exposure to hexachlorobenzene and dioxin has been associated with elevated levels of uroporphyrins. Exposure to polyvinylchloride (PVC) and polybrominated biphenyl has been associated with elevated levels of coproporphyrins.
Various drugs and other substances can suppress enzymes involved in porphyrin metabolism and affect the levels of urinary porphyrins. Such compounds include alcohol, sedatives, analgesics, antibiotics, estrogens, and oral contraceptives. Anemia, pregnancy, and liver disease can also affect porphyrin metabolism.
The Urine Porphyrins test is best used in conjunction with urine toxic metals pre- and post-provocation testing.
Posted by Healing in Santa Cruz (Member # 7798) on :
My Bio labs test was paid for by medicare. I never did see a bill so not sure how much. A good book that talks about Pyroluria Is Depression free naturally by Joan Mathews Larson She also talks about Bio labs 1-800-494-7785 Good explanation of what the supps do
Posted by brooke (Member # 16606) on :
If Bio-Lab is considered one of the best then I guess it's worth the money. If I went to LabCorp I would probably be wondering if it was done the right way.
Thanks for the info.
brooke
Posted by R62 (Member # 18531) on :
Healing, I ordered the book and have it here. Good book. Thank you for the recommendation.
I have a couple of questions for those using the protocol:
(1) What test do you use to check copper levels red blood cell or urine or hair... or does it matter
(2) How often do you check copper levels?
(3) Do you check zinc levels? How and how often?
(4) For those familiar with the methylation genetics.. B6 at high doses in contraindicated for those with COMT++ genetics. How do you reconcile?
Thank you.
Posted by linky123 (Member # 19974) on :
One thing I forgot to mention.
Bio Center Labs does not send a return Fed Ex Clinical pack like Great Plains and Doctors Data.
The clinical pack is required for blood/urine test kits if using Fed Ex.
I had to call all over town to get the clinical pack. Only the main Fed Ex office had them.
Also, Bio Center did not supply the little urine cup you need to pee in before pouring it into the specimen vial.
So I had to call around to find a pharmacy who had them.
Maybe someone just goofed and forgot to include everything with the test kit.
So at least from an convenience perspective, Drs. Data, and Great Plains do a better job.
As for the most accurate results, I just don't know.
The experience with Bio Center left a bad taste in my mouth.
I had to re-test and used Bio Center because they do not require authorization from an MD for the pyrrole test.
I had a hard time getting our out-of-town doc to sign off on the test for Great Plains.
Either way it was a hassle. Kind of seems that's a way of life with this disease.
My dad always used to say, 'your head just has to be harder than theirs.'
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