Wednesday, September 21, 2011

The perils of parasites and Pyroluria

Pyro-what?  Who is a pyro?  Isn't that somehow related to fire-starting?  I didn't know what pyroluria was either, that is, until I read and identified with practically every symptom on the list, with the exception of substance abuse.

Let me go back a few steps though.  As you recall, we were treating the family for parasites, because Gavin was diagnosed with Dientamoeba Fragilis.  We have completed the Alinia and Gavin's progress since the treatment is nothing short of astounding.  I have often said that you just don't know your own child until you have witnessed them in a place of wellness.  Even I didn't realize the impact of my own words as it relates to Gavin, until now!  He is a changed child.  I didn't even know my own child, neither of us did.  His real self has always peeked through the shadows occasionally, but never have we seen such consistency, ever.  He is beaming with humor and happiness, he is calm and shows clarity and focus in all that he does and most amazingly, he has not shown even an ounce of defiance!!  Time outs were becoming so bad that it felt like he was spending more time in time out than out of time out....did you catch that?  lol  It was so bad that we created "the calming space" in an effort to put a positive spin on time out, somewhere that HE could choose to go to relieve stress and recharge with some calm toys.  Since creating it, we haven't even had to use it!  We went off the Alinia and within a day, he emerged as this confident, well-spoken, and very well-behaved three year old.  I knew parasites were nasty buggers and had read that they are capable of destroying good health.  Never in my life did I think a parasite could cause so much disdain, but I will honestly never ever take health like this for granted again.  Our mental stability relies heavily on our health.  I can't stress this enough!!  I have said over and over again, that I don't believe that kids are "being kids" when they are defiant and I have seen the changes in Grayson with the Clostridia overgrowth, but this....this is still astonishing me!

So back to the Pyroluria.  Another huge wow for us, me included.  On my constant quest for better health, I stumbled upon this under-diagnosed condition that not only appears to fit me, but our boys too.  It's highly genetic and it's symptoms are profound by comparison to the ease by which it can be controlled.  Pyroluria is basically a fancy way of saying a person is deficient in vitamins B6 (pyrodoxine) and zinc. Let me sum it up for you....better yet, Nora Gedgaudas will do a better job than I ever could.

"Pyroluria is a genetic metabolic condition long recognized by the field of orthomolecular medicine and orthomolecular psychiatry.  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 these conditions and make them very difficult to reach with traditional and even holistic therapies.  –But pyroluria isn’t limited to these populations.  As much as 10% of the population may have this metabolic condition and not know it…but may have lifelong symptoms associated with it that tend to worsen with age…and stress."

And regarding how it effects children, I found this statement which is exactly what we are dealing with in our own two children.

"Although children tend to be more easily diagnosed than adults, the symptoms are consistent: poor tolerance of physical and emotional stress, mood swings, depression, noise and other tactile sensitivities.  Later symptoms can range from severe depression to chronic schizophrenia.  Accompanying physical symptoms can include pain, seizures, even complete physical debilitation."

All that from a simple B6 and zinc deficiency??  All that and more!  You would never connect it's oversimplified treatment with the significant health challenges it is capable of causing.  The reason a person is so deficient in these nutrients is because of a byproduct called kryptopyrroles created from the synthesis of hemoglobin.  Kryptopyrroles bind very tightly with zinc and B6, making them unavailable to the body.  Krypopyrroles tend to increase with stress and age, which means, this disorder will only snowball, if undetected.  Do you know ANY mainstream doctors who will diagnose something so simple to rectify and without the use of prescriptions?  Since they have about half a day of nutritional training in all their years of med school, my guess is that they won't even know what it is.  But they should, because it has it's hand in many illnesses being misdiagnosed as mental disorders, and medicated unnecessarily.  If you are a regular reader, you already know how much I DESPISE covering up symptoms with medication.  Our body cries out to us for help, telling us there is an imbalance somewhere, and we shut it up with medication.  If only we spent half the time discovering what CAUSES these imbalances, we could spend more time enjoying our lives!

So let's see, if you or someone you know can identify with Pyroluria, here is a list of the more common symptoms from Nora's website.

The following includes the most common symptoms associated with the condition Pyroluria.  If you answer “yes” to 15 or more of these then further testing may be worthwhile:

PYROLURIA QUESTIONNAIRE

1. Little or no dream recall
2. White spots on finger nails
3. Poor morning appetite +/- tendency to skip breakfast
4. Morning nausea
5. Pale skin +/- poor tanning +/- burn easy in sun
6. Sensitivity to bright light
7. Hypersensitive to loud noises
8. Reading difficulties (e.g. dyslexia)
9. Poor ability to cope with stress
10. Mood swings or temper outbursts
11. Histrionic (dramatic) tendency
12. Argumentative/enjoy argument
13. New situations or changes in routine (i.e., traveling) particularly stressful
14. Much higher capability and alertness in the evening, compared to mornings
15. Poor short term memory
16. Abnormal body fat distribution
17. Belong to an all-girl family with look-alike sisters
18. Dry skin
19. Anxiousness
20. Reaching puberty later than normal
21. Difficulty digesting, a dislike of protein or a history of vegetarianism
22. Tendency toward being a loner and/or avoiding larger groups of people
23. Stretch marks on skin
24. Poor sense of smell or taste
25. Feel very uncomfortable with strangers
26. Frequently experience fatigue
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
30. Easily upset by criticism
31. Sweet smell (fruity odor) to breath or sweat when ill or stressed
32. Prone to acne, eczema or psoriasis
33. A tendency toward feeling anxious, fearful and carrying lifelong inner tension
34. Difficulty recalling past events or people
35. Bouts of depression or nervous exhaustion
36. Prone to frequent colds or infections


Again, if you have answered yes to 15 or more of these then consider testing further using a urinary screening test for the presence of elevated kryptopyrroles via Bio Center Lab in Wichita, Kansas (Phone: 316-684-7784 or 1-800-494-7785). Here is their web site for more information.

Testing for this condition is simple, relatively inexpensive and readily accessible to anyone without a prescription.

I answered yes to 27 of these 36 questions.  In fact, I had 15 of them before I even got to 20!  Since supplementing (as well as treating my thyroid with the iodine protocol), I have had energy, I wake ready to go, I feel good most days and oddly enough, I have my dream recall back almost nightly now! We've taken a small break from chelation, so I am sure I will return to some dark days before I emerge as the beautiful butterfly, but boy am I learning a lot in the process of healing!!

If you want to learn more about Pyroluria, I highly recommend the following literature:

Journal of OrthomolecularMedicine: The Discovery of Kryptopyrrole and its Importance. Vol. 10,No. 1, 1995

Pyroluria A Blood Disorder Causing Hard-to-Treat Depression and other Mental Health Conditions

Pyroluria: Overview

Pyroluria

5 comments:

Julie Butler said...

I just found your blog! I am struggling with d. fragilis with my 6 yr old son. we have done a few treatments and I am still new on this road to gut healing. I am trying to figure out what kind of testing i should do next. is it possible to chat with you? he has some sensory stuff and behavioral challenges that I am very interested in overcoming with diet changes...he is a very picky eater and in addition to follow up stool tests to see if the parasite is still there, i am wondering if i should do a full on food sens panel or explore hair testing or something else? he's tested neg. for gluten and casein sensitivity in the past and i've waffled back and forth w/going GFCF. I would love your advice!!! thanks, julie
juliekbutler at gmail

Julie Butler said...

I just found your blog! I am struggling with d. fragilis with my 6 yr old son. we have done a few treatments and I am still new on this road to gut healing. I am trying to figure out what kind of testing i should do next. is it possible to chat with you? he has some sensory stuff and behavioral challenges that I am very interested in overcoming with diet changes...he is a very picky eater and in addition to follow up stool tests to see if the parasite is still there, i am wondering if i should do a full on food sens panel or explore hair testing or something else? he's tested neg. for gluten and casein sensitivity in the past and i've waffled back and forth w/going GFCF. I would love your advice!!! thanks, julie
juliekbutler at gmail

Jessica said...

Hi Julie,
Sure, we can talk. I would be glad to share what we have done so far with our little guy, but we have not retested for the parasite, therefor have no idea, if it's truly gone. I can share some ideas with you though. E-mail me your telephone number and when would be a good time to call (as well as what time zone you are in). My e-mail address is luckylot@ptd.net.

Harry said...

I struggled with all sorts of symptoms including Blastocystis Hominis until I found out I have Pyroluria. Once you get the supplements right, life can be very good indeed.

If you suspect any form of parasite, you should get tested for Pyroluria. The zinc deficiency associated with Pyroluria really lowers your immunity and lets the bugs take over.

I blog about life with Pyroluria now at http://pyrolurialife.com

Jessica said...

Thank you for sharing, Harry!