Saturday, September 14, 2013

Pyroluria

Pyroluria is known by many different names including Pyrrole Disorder, Kryptopyrrole, Kryptopyrroluria, Pyrroluria, Mauve Factor and Hemepyrrole. As many as 50% of those with autism, 40% of alcoholics, 70% of schizophrenics, 70% of persons with depression and 30% of persons struggling with ADD may have pyroluria underlying their conditions. There are lifelong symptoms associated with it that tend to worsen with age and stress.

During the synthesis of hemoglobin in the body, waste products called kryptopyrroles are generated. Kryptopyrroles are normally excreted uneventfully. In those with pyroluria, kryptopyrroles bind very strongly to zinc, vitamin B6, and Omega 6. This especially occurs when the individual encounters any sort of bodily stress, whether it be an illness, over-exertion, or mental/emotional stress. The kryptopyrroles are then excreted in the urine, taking these 3 important nutrients with them, which is a very big problem. These nutrients are critical for the functioning of your entire body and mind, including your digestion, immune system, cognitive functioning and emotions.

Symptoms of pyroluria may lead to lifelong issues with severe inner tension, ongoing anxiety, poor stress tolerance (stress of any kind makes symptoms worse), digestive issues including digestion of meat, frequent colds and infections, joint pain or stiffness, acne, eczema or psoriasis, mood swings and reactivity.

The really good news is that once diagnosed, pyroluria is very manageable. The bad news is that ongoing supplementation is needed indefinitely in order for symptoms to remain manageable long term. Without appropriate supplementation symptoms tend to return again in a week or two.

Disorders commonly diagnosed in Pyrolurics:

Alcoholism
ADD/ADHD
Autism/Aspergers
Allergies
Bi-Polar Disorder
Down Syndrome
Epilepsy
Hypothyroidism
Learning Difficulties (ie Dyslexia)
Lyme Disease
Manic Depression
Muscular Sclerosis
Neurosis/Neurotic - can become violent offenders
Obsessive Compulsive Disorder (OCD)
Parkinson's Disease
Polycystic Ovarian Syndrome
Post Partum Depression
Rheumatoid Arthritis
Schizophrenia
Substance Abuse
Tourette's Syndrome (Tics)

Unfortunately Pyroluria falls outside the realm of mainstream medicine due to the fact that the only way to rectify the problem is by improving nutritional status, diet, digestion and stress levels. Mainstream medicine relies on drugs to suppress a symptom or relieve suffering, and this form of treatment will not work for a person who has a Pyrrole disorder. Sadly sufferers of Pyroluria fall through the cracks and are often misdiagnosed and given medication or drugs that do nothing to rectify the underlying problem. Unfortunately these medications can lead to further deterioration of a persons health.

People with this disorder have copper toxicity. Copper is an essential trace mineral that is vitally important for both physical and mental health, as long as it is kept in proper balance. Zinc lowers copper in the body. Without it, copper builds up and depletes vitamin C, which results in frequent illness. Thyroid and Adrenal glands are extremely sensitive to copper. Copper toxicity leads to reduced thyroid function (hypothyroidism), which can be diagnosed as Hashimoto's.

Copper Toxicity leads to headaches/migraines, fatigue, insomnia, depression, bipolar disorder, skin rashes, spaciness, detachment, learning disorders, PMS, memory loss, hair loss (especially among women), osteoporosis and addiction. It also leads to the rise of estrogen, which in large amounts, is a potent carcinogen and can cause cancer.

Copper has a huge impact on children. High-copper mothers pass on excessive copper (and often low zinc) to the fetus through the placenta. It is also passed through breast milk, which can cause a baby to stop nursing prematurely. Common conditions such as ear infections, skin rashes and dandruff usually involve an imbalance between copper and zinc in children. Other conditions include learning and developmental disorders, colic, ADD/ADHD, sleep problems and childhood cancers.

There are positive traits of high levels of copper, which include a warm, caring, sensitive, emotional nature and a child-like quality. Many traditionally feminine traits are associated with high copper levels, such as softness, gentleness and intuitiveness. High copper people are often young looking. But, if copper gets too high, negative personality traits show up. These include spaciness, poor memory, racing thoughts, living in a dream world, childishness, excessive emotions, sentimentality, tendency to depression, fearfulness, hidden anger/resentment, phobias, psychosis and even violence.

Some with high copper dislike protein. They become obligatory vegetarians and crave high carbohydrate diets. This is because too much copper impairs liver function, which is necessary to break down protein. They are no longer able to digest meat very well. Protein feels heavy or causes other symptoms. However, these individuals usually NEED to eat protein because red meat is the best dietary source for zinc, which lowers the levels of copper, and makes the digestive enzymes needed for the breakdown of protein. In fact, becoming vegetarian actually makes things worse because vegetarian proteins are high in copper, such as nuts, beans, seeds and grains. Some may feel that they are becoming more "spiritual" on a vegetarian diet, but that goes along with the heightened emotional aspects of copper toxicity noted above. Once zinc is introduced, the taste for meat will come back, as will the ability to digest it.

Vitamin B6 is essential for dopamine production, which is an essential neurotransmitter in the brain.  When the body of a pyroluric individual is stressed, Vitamin B6 is excreted, thus the loss of dopamine.  Dopamine has been called the "pleasure neurotransmitter."  The body may crave sweets/carbs as a biologial attempt to increase dopamine, thus increase pleasure.

Unfortunately, Zinc is also dumped in this process, which is essential to blood sugar regulation by influencing carbohydrate metabolism, increasing insulin response, and improving glucose tolerance. There is a clinical correlation between low zinc levels and insulin resistance.  Insulin resistance is correlated with obesity and body fat distribution.

Incidently, zinc deficiency is also related to the overgrowth of candida (yeast).  Zinc deficient individuals may experience frequent yeast infections.  They may also have a yeast overgrowth in the gut, which results in further cravings for sugar/carbs, as yeast feed and grow on these things.

Below is a list of symptoms associated with Pyroluria. If you experience 15 or more of these, it is likely that you have Pyroluria.

1. Little or no dream recall (B6)
2. White spots on finger nails (Zinc)
3. Poor morning appetite +/- tendency to skip breakfast (Zinc)
4. Morning nausea (B6)
5. Pale skin +/- poor tanning +/- burn easy in sun
6. Sensitivity to bright light (Zinc)
7. Hypersensitive to loud noises (Zinc)
8. Sensitivity to smells (Zinc)
9. Poor ability to cope with stress (Zinc and B6)
10. Mood swings or temper outbursts (Zinc)
11. Histrionic (dramatic, emotional) tendency (Zinc)
12. Argumentative/enjoy argument (Zinc)
13. New situations or changes in routine are particularly stressful (B6)
14. Much higher capability and alertness in the evening, compared to mornings (Zinc)
15. Poor memory (Zinc and B6)
16. Obesity or Abnormal body fat distribution (Zinc)
17. Belong to a family with a lot of look-alike sisters
18. Dry skin (B6)
19. Anxiousness or nervousness, fearful, lifelong inner tension (B6)
20. Reaching puberty later than normal - growth after the age of 16 (Zinc)
21. Difficulty digesting, a dislike of protein or a history of vegetarianism (Zinc)
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin (Zinc)
24. Poor sense of smell or taste; preference for spicy foods (Zinc)
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue or exhaustion (Zinc)
27. A tendency to overreact to tranquilizers, barbiturates, alcohol or other drugs (in other words, a little produces a powerful response)
28. A tendency toward anemia
29. History of mental illness or alcoholism in family (Zinc and B6)
30. Easily upset by criticism, offended easily
31. Bad breath or body odor when ill or stressed (Zinc)
32. Prone to acne, eczema or psoriasis (Zinc)
33. Thin skin
34. Hyper-pigmentation of the skin
35. Bouts of depression or nervous exhaustion (B6)
36. Prone to frequent colds or infections (Zinc)
37. Abdominal pain; constipation, irritable bowel syndrome (Zinc)
38. Hair loss (lack of hair on head, eyebrows and/or eyelashes) (Zinc)
39. Irregular menstrual cycles, PMS (B6)
40. Low libido
41. Allergies (Zinc)
42. Tingling in arms and legs (neuropathy) (B6)
43. Migraines (B6)
44. Muscle pain (achey, flu-like tenderness) (B6)
45. Frequent yeast infections/yeast overgrowth (Zinc)
46. Reading difficulties (e.g. dyslexia)
47. Get motion sickness (B6)
48. Cold hands and feet (Zinc)
49. Codependency
49. Substance abuse/addiction (B6)
50. Creaking joints, joint pain, knee pain (B6)
51. Overcrowding of teeth in upper jaw (Zinc)
52. Poor looking tooth enamel; tendency for cavities (Zinc)
53. Delusions, hallucinations, paranoia (Zinc)
54. Emotionally unstable (Zinc)
55. Pessimism (Zinc)
56. Early greying of hair (Zinc)
57. Insomnia (Zinc and B6)
58. Prone to stitch in side when running (Zinc)
59. Hyperactivity (Zinc and B6)
60. Fluid retention (B6)
61. Obsessive Compulsive Disorder, which includes collecting/hoarding (B6)
62. Seizures (B6)
63. Hypoglycemia (Zinc)
64. Frequent ear infections as a child (Zinc)
65. Suicidal tendencies (Zinc)
66. Gluten intolerance (Zinc)
67. Prone to ovarian cysts (Zinc and B6)
68. Craving for sweets/carbs (Zinc and B6)
69. Tremors (B6)
70. Age related Macular Degeneration (Zinc)
71. Low Progesterone = miscarriage in first 7 weeks or early menopause (B6)

As noted, if you experience a combination of the symptoms above, you likely have pyroluria. This can be tested through a simple urine test, however testing your levels of B6 (urine) and zinc (blood) are much more important. Copper levels can be tested in various ways, but requires more detail.

Pyrolurics have a greater than normal need for zinc, vitamin B6 and omega-6 fatty acids. These can be supplemented individually or incorporated into the diet. The favoured forms of these nutrients are Zinc picolinate and Pyridoxal-5-phosphate (P5P) for B6. Vitamin B6 (P5P) is water soluble and is not stored in the body, so it's depleted rather quickly. It may be best to supplement this every few hours. B6 requires magnesium to be effective, so one must also ensure intake of magnesium.  The standard american diet is full of omega-6 fatty acids due to over-use of cooking oils, so it's often not necessary to supplement this. The body does need dietary arachidonic acid (found in eggs, butter, red meat and liver) and the essential fatty acid GLA (found in supplements like black currant seed oil and evening primrose oil).

Here is a great link with information on the importance of zinc, types of zinc to take, suggested dosage, and side effects of over-consumption, which is rare.

Foods high in zinc, from highest to lowest:
1. Seafood: Oysters, crab and lobster
2. Beef and Lamb
3. Wheat Germ
4. Spinach
5. Pumpkin and squash seeds (also sunflower chia and flax)
6. Cashews (also pine nuts, pecans, almonds, walnuts, peanuts, hazelnuts)
7. Cocoa and chocolate (also high in copper)
8. Pork & Chicken
9. Mung beans (also baked beans, kidney beans, chickpeas)
10. White mushrooms (also Portabella and shitake)

The safe upper limits for zinc are listed below. 

Life Stage Upper Safe Limit
Birth to 6 months4 mg
Infants 7–12 months5 mg
Children 1–3 years7 mg
Children 4–8 years12 mg
Children 9–13 years23 mg
Teens 14–18 years34 mg
Adults40 mg

Zinc combined with certain foods may not be absorbed into your body, so it is important to avoid the following foods for at least 2 hours after you take zinc: Bran, Fiber-containing foods, Phosphorus-containing foods such as milk or poultry, Whole-grain breads and cereals.  Zinc, Magnesium and Calcium compete for absorption, so it is best to take them separately to ensure you are getting the most out of your supplements.  Unlike other trace elements zinc does not get stored in the body. For every 15mg of zinc you need to take 1mg of COPPER to maintain the correct balance.

Here is a great link with information on the importance of B6, suggested dosage and side effect of over-consumption.  

Foods high in B6, from highest to lowest
1. Rice bran, brown rice
2. Chili Powder, paprika, garlic and other herbs/spices
3. Pistachios
4. Garlic (especially raw)
5. Liver
6. Yellow-fin Tuna, salmon, cod
7. Sunflower and sesame seeds
8. Pork tenderloin
9. Molasses and sorghum syrup
10. Hazelnuts

The safe upper limits for vitamin B6 are listed below.

Life StageUpper Safe Limit
Birth to 12 monthsNot established
Children 1–3 years30 mg
Children 4–8 years40 mg
Children 9–13 years60 mg
Teens 14–18 years80 mg
Adults100 mg


Here is some more information, which includes testing and treatment.
Here is another great site for information

Testing can be done inexpensively, without a doctor, at the following labs:

$80 - Direct HealthCare Access

$79 - RiordanClinic


In related news, Vitamin B6 (P5P) is becoming very controversial as the drug company, Medicure Pharma Inc, is petitioning to have the substance banned from OTC sale.  The company plans to market it in their form of a vitamin/drug (named MC-1) after recent research is finding that it is effective in reducing injury associated with Ischemia.  It has also been shown to reduce the risk of colon cancer.
http://www.ncbi.nlm.nih.gov/pubmed/12020872
http://www.ncbi.nlm.nih.gov/pubmed/23467420

All this means is that we will no longer be able to buy P5P over the counter.  Instead, we will have to get a prescription for it and pay a higher price to the pharmaceutical companies.


References:
http://www.ncbi.nlm.nih.gov/pubmed/18062169
http://jn.nutrition.org/content/133/5/1473S.long
http://www.ncbi.nlm.nih.gov/pubmed/20097602
http://www.ncbi.nlm.nih.gov/pubmed/2761676
http://www.ncbi.nlm.nih.gov/pubmed/18383989
http://www.ncbi.nlm.nih.gov/pubmed/9659710?dopt=Abstract
http://www.mothernature.com/Library/Bookshelf/Books/10/116.cfm
http://www.mothernature.com/Library/Bookshelf/Books/10/116.cfm
http://www.riordanclinic.org/research/articles/89024739.pdf
http://www.biobalance.org.au/_downloads/discerning-the-mauve-factor-part-ii-galley.pdf
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2 comments:

  1. Thank you for this article. I have been having issues with extreme anxiety and others and came upon this condition and think I have it. I've been using regular B-6 and Zinc and am seeing the lessening of my symptoms. Your article is clear and concise with more information than I have seen in other offerings. It must have taken a lot of research to put it together. Much appreciated!

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  2. Dear Shelley,
    I am giving a talk at Stanford soon on a parent's view of her son's recovery from autism. Pyroluria treatment was key for us. I would love to reference you and your blog post as well. Would you be interested in talking with me about this? I would be very grateful--it will be more impactful if I have multiple parents whose children recovered from difficult maladies using this supplementation protocol. alternative.dr.mom at gmail.com

    ReplyDelete