Invest in ME Conference 12: First Class in Every Way
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Pyroluria and Zinc

Discussion in 'General Treatment' started by acrosstheveil, Mar 11, 2015.

  1. acrosstheveil

    acrosstheveil Senior Member

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    I woud like to find a test I can order to be sure I have pyroluria. I have been supplementing with zinc, p5p, biotin, manganese, and copper and have improved but wish there was a sure-fire way to tell if I am getting enough of each of these supplements.

    Is there a kit I can order online that help with this?

    Also, I ordered some "zinc tally" which is basically a liquid zinc solution you put in your mouth. It says if you can taste it then you have sufficient zinc levels and if you can't you are probably zinc deficient. I tried some today and I'm not sure what I'm tasting, the zinc or the sulphate portion. I know I'm sensitive to sulfur compounds and it is zinc sulfate. It tasted pretty strong.

    Does this mean I should stop supplementing zinc at high levels? I'm currently taking anywhere from 120-240 mg of zinc picolinate a day.

    I still have very bad sensitivities and allergies borderlining on anaphylaxis. Maybe I need more p5p?


    Where's the pyroluria experts at ?
     
  2. drob31

    drob31 Senior Member

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    I've had the test done. I was elevated but not positive--it's sort of a grey area. I wouldn't supplement that high with the zinc as it could put other minerals out of balance.

    In any case it's possible that having pyroluria is influenced by an autoimmine condition called antiphospholipid antibodies, which is something else I've tested positive for.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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  4. PeterPositive

    PeterPositive Senior Member

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    @acrosstheveil
    Make sure to also measure HPL, Kryptopyrrole may or may not be sufficient as a marker.
    http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder

    I have done the tests and returned positive for both markers (see signature). Adding moderately high amounts of Zinc (50-60mg) and B6 (50-60mg P5P) helped but didn't provide major changes.

    Given my moderately elevated values there doesn't seem to be a need to push Zinc and B6 too high. Additionally I also have pretty low copper levels, so I need to keep an eye on it.

    I would not recommend keeping those high levels of Zinc supplements for a long time. They will create mineral imbalances, particularly copper and iron.
    http://ods.od.nih.gov/factsheets/Zinc-HealthProfessional/#h8

    cheers
     
    Wayne likes this.
  5. PeterPositive

    PeterPositive Senior Member

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    Another reason for elevated HPL and Kryptopyrrole is leaky gut.
    In my case that's very likely the case.

    See here:
    http://www.drlam.com/blog/pyroluria-and-adrenal-fatigue-syndrome/5273/

    and here:
    http://www.biobalance.org.au/_downloads/discerning-mauve-factor-part-1-galley-feb-2008.pdf
     
    Wayne likes this.
  6. acrosstheveil

    acrosstheveil Senior Member

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    Sushi likes this.
  7. ris

    ris

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    how can I find what lab in California can do the test, i had a request and went to Quest diagnostics and they dis continued the test. also I read here to test also for HPL, is this is also a Urine test?
     
  8. PeterPositive

    PeterPositive Senior Member

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    Yes, HPL is a urine test and it's the most accurate value.
    http://www.ncbi.nlm.nih.gov/pubmed/18383989

    cheers
     
    ris likes this.
  9. Oakleigh

    Oakleigh

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    There is a company recommended by Dr William Walsh who specialises in this field who do all sorts of testing including for pyroluria and you can consult them on the result or, become a patient etc -http://pyroluriatesting.com/
     
    Last edited by a moderator: Aug 21, 2015
  10. Wayne

    Wayne Senior Member

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    The following is a notable online post was made by a parent (I think a woman) whose son had pyroluria. There's a section at the end about where the testing was done, but don't know how up-to-date the information is:

    I am a Ph.D. biochemist by profession and on the faculty of a large medical school. I am summarizing many pasts posts but most important, I want to mention that I just learned that one does not need a physician to order the test for pyroluria. This is something you can do on your own. For those of you who may be skeptical of vitamin treatments, I have addressed this concern at the bottom of the post.

    My son was once diagnosed with TS, ADHD, OCD, ODD, episodic rage tantrums, mood swings (possibly bipolar), learning disabilities (visual processing, dysgraphia, Executive Dysfunction). After eight years of seeking solutions to his problems, he is now completely normal and getting all A's in school- completely on his own, without tutorial help. He is especially good in math, whereas I heard for years "I hate math" on a nightly basis. He has been emotionally stable and episode-free for about a year now.

    He had two problems. The first was a tapeworm, picked up when we lived in Europe and this took six years to get properly diagnosed and eliminated. The second problem was a genetic disorder in the family, known in the alternative medical literature as "pyroluria". Individuals with pyroluria have an abnormal pyrrole compound in their urine. This compound is believed to created deficiencies in either B6 and/or zinc. The symptoms depend upon the genetic makeup of the individual and wax/wane with dietary intake.

    Although the symptoms are different for each individual, I have noticed that individuals who easily experience side effects to medications, are more likely to have pyroluria because pyroluria can definitely adversely affect the function of cytochrome P450s, the proteins which clear medications and toxins from the body. It is now believed that pyroluria occurs in individuals under oxidative stress, caused by poor genetics (such as familial alcoholism) and/or local environmental problems.

    Conventional medicine does not recognize pyroluria as a disorder. Conventional medicine does not refute this disorder either. It simply ignores it. The disorder has been known for over 40 years and the abnormal urine marker if found in 20% bipolar, 30% ADHD, 40% alcoholics, 50% autistic, 60% schizophrenics, and 70% Down's Syndrome. No one has followed the percentage in TS, but I suspect that it is at least 30% if not more.

    The newer treatments for pyroluria include about 200 mg of P5P, 50 to 150 mg of zinc, Mg, Mn, antioxidants (particularly reduced glutathione), and primrose oil. The value of each supplement that is needed depends upon the level of the abnormal pyrrole in the urine.
    ---
    Testing for pyroluria is extremely easy and inexpensive. The best place to get the urine testing done is the Bio Center Lab in Wichita, Kansas (Phone: 316-684-7784 or 1-800-494-7785). Here is their web site for more information: http://brightspot.org/biocenter. This lab is considered to be the gold standard for pyroluria testing. You must call between Monday and Thursday and ask that a urine test kit for pyroluria be shipped to your home.

    I prefer that the urine sample be collected first thing in the morning before eating, in order to make a valid comparison, if necessary, with other tests. Then you mix the urine with the preservative in the tube and I prefer to cover the tube with aluminum foil to protect against light. You must then freeze the specimen as well as the shipping ice packs (if you haven't already frozen them) and then ship later in the day by overnight express.

    I use DHL-Airborne which has special packs for lab specimens. The test costs $36 and shipping from my home now costs about $34. I am happy to say that I was mistaken in past posts. YOU DO NOT NEED TO HAVE A PHYSICIAN ORDER THE TEST. You can order the test yourself. Medical insurance will probably not cover the cost of the test. A level below 10 in considerable normal. Treatment should be considered for a level between 10 and 20 to avoid waxing and waning symptoms. A level about 20 is definitely abnormal and should be treated.

    My son has received proper pyroluria treatment for about a year and he has been completely normal since his urinary pyrrole level fell from 60 to below 10 over a 4 month period corresponding to the treatment. Now that I see what normal is for him, I am shocked to realize how mentally sick he really was before. I have notified both family and friends whom I suspect to have pyroluria and many are testing positive, getting the treatment and returning to complete normalacy.

    I urge everyone who posts here to consider pyroluria as a potential diagnosis, but it surely won't affect everyone who posts to this site. However, it is simple and relatively inexpensive to rule out as one of the problems. If you or your child does have pyroluria, consider yourself lucky because the treatment works. You can learn more about pyroluria from

    http://drkaslow.com/html/pyroluria.html
     
  11. ris

    ris

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    i dont mind paying for the test, but i'm concerned that the handling at home + having it with the proper ice pack will not ruin the specimen and that's why I would really like to do that at a lab where they have more experience with handling and shipping the proper way.
     

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