1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

pyroluria test results

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Suzy, Dec 26, 2009.

  1. Suzy

    Suzy Guest

    Pyroluria test

    Does anyone know of a lab performing this test that does not require a doctors script ?
  2. Suzy

    Suzy Guest

    I've uploaded my recent pyroluria test in case anyone wants to see what the test is about.

    kryptopyroleJan2010.jpg
  3. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    946
    Likes:
    91
    susie
    i really appreciate you posting this.. but I can't figure out how to enlarge it... any ideas anyone?
    tnx
  4. Suzy

    Suzy Guest

    I think you can just click on it to enlarge it
  5. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    175
    USA.Earth
    Susie,
    Do you have a doctor's interpretation of the result?

    Looks like you are borderline for having Pyroluria. But with CFS so many of our test results are off.

    Here is a speculative view... considering that the bloodflow in the kidneys is half of normal in CFS (per one study anyway), I wonder if the real corrected result would be about double what this test shows, which would be 21, and that would be full Pyroluria. But again with the lowered kidney bloodflow and poor detox in CFS you probably might need a reduced treatment dose as well.
    --Kurt
  6. kat0465

    kat0465 Senior Member

    Messages:
    230
    Likes:
    2
    Texas
    suzy,
    what is pyroluria?? i gather its a kidney thing. interesting cause several months ago my kidney function went wacko, also i didnt know us cfs peeps had low blood volume to thier kidneys :( thats really scary
    almost as scary as the Heart stuff.
  7. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    946
    Likes:
    91
    hi suzy,
    yep...I was able to enlarge it...by clicking on the icon that popped up.
    I guess I have the same question as Kurt. Does your doc have any experience interpreting these results or treating the condition?
    Presumably, it was your doc who suggested the test?

    Kat.. here is a link to an article about the condition. this was written by a guy called scott forsgren..who is a patient of klinghardt's. Just fyi.
    http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf
  8. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    835
    Likes:
    248
    Kryptopyrroluria aka Hemopyrrollactamuria (KPU aka HPU)

    If you see the KPU thread you'll see what a high measurement of Kryptopyrroles indicates.

    Dr Klinghardt is finding high levels in 80% of his autism patients (when measured by the more refined test at Vitamin Diagnostics) and also significantly in CFS and FMS patients I believe.
    He recommends correcting the condition (where theres loss of zinc, B6, biotin, manganese and omega 6 oils - to the detriment of a myriad of enzyme systems) before addressing Methylation.
    Kryptopyrroluria (high kryptopyrrole levels) affects heme metabolism. And there's SO much interesting reading around heme deficiency :)
    eg "Heme deficiency may be a factor in the mitochondrial and neuronal decay of aging."
    http://www.pnas.org/content/99/23/14807.full

    In the KPU thread Sushi posted a link early on to an article on the treatment of the condition, and I linked to this recent presentation: (Also shared by Joey who is working up to the KPU protocol.)
    http://betterhealthguy.com/joomla/images/stories/PDF/kpu_lymelighters_0110_presentation.pdf

    My feeling: for some of us treating this could be huge. :Retro smile:
  9. Suzy

    Suzy Guest

    Kurt,
    I just received the resuts yesterday and have not talked to my doctor about it.

    About the low blood flow to the kidneys, that is interesting and I suppose that would mean a higher kryptopyrile. Do you have a reference for that study ... might be something to think about doing ... I hate to speculate on that.
  10. Suzy

    Suzy Guest

    aquaruiusgirl,

    It was not my doc who suggested the test. I have not been able to find a doc aggressive or knowledgeable enough to treat this condition so 90% of the tests are my suggestion. Just the way it is.

    In this case, the interpretation is pretty clear I think, unless there is a blood volume flow like Kurt mentioned.
  11. R**

    R** Senior Member

    Messages:
    112
    Likes:
    2
  12. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    Hi all
    Anyone taken pyroluria test? I am considering taking it but there are two different opinions on test samples. Some says kryptopyrroles decompose easily and for that reason one time sample should be taken and frozen immediately. Others use 24 hour collection and that say different amounts of kryptopyrroles are excreted at different times of the day so 24 hour sample is better. I wonder if there is also lab method differences for these two approaches? Anyone has any idea on which test is better?Also do you recommend any labs? Thanks.
  13. globalpilot

    globalpilot Senior Member

    Messages:
    584
    Likes:
    202
    Ontario
    Hi Cindi,

    A little late in responding but I've been reading about this condition in the last few days. Someone above posted a link to information on betterhealthguys website. He has the instructions from Dr Klinghardt who recommends 24 hour for the reason you stated.

    I am going to redo mine with these directions - my single sample was borderline positive.

    GP
    Cindi likes this.
  14. arx

    arx Senior Member

    Messages:
    525
    Likes:
    134
    I can't find a test for Pyroluria here in India. Will serum Zinc,Copper and Ceruloplasmin be useful? Or should I just try Zinc and P5P for some days and see if it helps. I hate the unavailability of tests here,I hate guesswork:(
  15. Rand56

    Rand56 Senior Member

    Messages:
    488
    Likes:
    173
    Myrtle Beach, SC
    hi arx

    Just wondering if you ever trialed taking the Zinc and P5P? I myself just started my own trial of taking higher doses of both. Don't know how accurate any zinc test is, but I just took a zinc tally test and I tasted nothing. I've been taking 50mg's of zinc picolinate per day for quite some time. I've been doing a lot of reading up on Pyroluria lately and I suspect it is possible I could have it.

    Rand
  16. arx

    arx Senior Member

    Messages:
    525
    Likes:
    134

    Hi Rand,

    I did try taking for about a week. I increased zinc(in acetate form) to 100 mg/day and then started having some nausea.I stopped taking them then. I too am reading up a lot on pyroluria,and copper toxicity. I'm presently waiting for my hair mineral analysis results,after which I will ponder what to do. I live in India and there is no test for pyroluria here. You might have it in your country. If I were you I'd get it checked...
  17. Rand56

    Rand56 Senior Member

    Messages:
    488
    Likes:
    173
    Myrtle Beach, SC
    Yes I am going to get checked for it. Figured before then, I can atleast give some higher doses a whirl. Immediately went up to 100mg's of zinc picolinate. Today will be only my 3rd day at this dose. No stomach upset for me yet. I've taken the full 100mg dose at dinnertime. Also taking 200mg's of P5P and EPO for the GLA part. Just added in 1000mcg of biotin and continuing with some magnesium oil that I have already been doing.

    Rand
  18. Rand56

    Rand56 Senior Member

    Messages:
    488
    Likes:
    173
    Myrtle Beach, SC
    hi globalpilot

    Just wanted to ask if you ever got around to doing the 24 hour test, and if so, any difference in the results compared to your single sample you did?

    Rand
  19. globalpilot

    globalpilot Senior Member

    Messages:
    584
    Likes:
    202
    Ontario
    Hi,
    Yes the results came back extremely high.
    I repeated it b/c they were so high and they came back even higher.

    GP
  20. Rand56

    Rand56 Senior Member

    Messages:
    488
    Likes:
    173
    Myrtle Beach, SC
    Ok thanks for the response. I'm thinking the 24 hour test is the way to go. I haven't researched enough yet on which lab to go thru, so if I may ask, which lab did you get the test with?

See more popular forum discussions.

Share This Page