Posted by temoigneur on April 5, 2006, at 19:27:21
I came across the following article written by a PhD in biochemistry.. who's son suffered from TS, OCD, ADHD, and ADD..
She found he had a genetic disorder called pyroluria, thought to affect up to 40% of alcoholics, and is a marker for anxiety... she concludes that if you take the test, (recommends this lab.. http://brightspot.org/biocenter) and are positive, treatment is easy and it works. She reports her boy went fom being very mentally ill, to a stable straight A student. .. most recent interventions include.. 200 mg of P5P, 50 to 150 mg of zinc, Mg, Mn, antioxidants (particularly reduced glutathione), and primrose oil.
Article..
Vitamin Success and Urine Testing
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I haven't had much time to post since the new forum was established, so the newbies won't know me, but the oldtimers will. 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 PHYSCIAN 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
Because B6 and zinc are used by over 200 proteins in the body, the symptoms of pyroluria vary from individual to individual, depending upon their genetic make-up. Very often pyroluria is marked by mood swings, anxiety, sensitivity to medications, poor appetite, carb cravings, etc. The web site listed above gives a bit of a description of pyroluria, but please keep in mind that a person could still have the condition without having any of the symptoms listed.
As for the failure of vitamins to work, I have learned a good deal about vitamins through my son's ordeal. I now realize that vitamins will be effective in about 80% of the cases of TS and probably ADHD. How can you tell if you or your child fall into the 20% unsuccsessful group or the 80% successful group. One criterion is whether the symptoms wax and wane. If the symptoms are constantly there, day and night, then vitamins might help, but vitamins might not help because there is an underlying genetic mutation in one or more genes. If the symptoms are NOT present all of the time, then the right combination of vitamins will most likely help. HOWEVER, to get the right supplement regimen for the individual, one needs to get the correct nutritional testing done. When people say that vitamins have not worked, ask them if they have had the proper clinical testing done and 99% of the time, you will find out that they have not had the testing done and are trying to "experiment" with vitamins on their own. If this is the case, don't blame the supplements for not working. They are using the wrong approach to finding a solution to the problem. Please keep in mind that conventional, traditional medicine does not train physicians to do the proper vitamin testing during medical school. You need to find a physician, usually an alternative medical physician, who has had about a year of extra medical trainging specializing in supplements, to do the tests and to know how to interpret the tests. These physicians are hard to find, but you can start with ACAM.org. Be sure to interview the staff or physician about their training and experience in nutritional supplementation before agreeing to tests. If you can't find someone locally, then the better thing to do is to contact a regional center for vitamin testing, that is, if you can afford it. I highly recommend the Pfeiffer Treatment Center
( http://www.hriptc.org/). They have many years of experience treating all kinds of disorders with supplementation. So they know what tests to order, depending upon the symptoms. I think it is a 2-3 month wait for an appointment and you need to fill out forms in advance. All of this is described on their web site. They also have traveling clinics, so it may not be necessary to go to Illinois. If I had followed my own advice initiallly, then I would have saved my family from suffering for over eight years. I just didn't know how or where to find appropriate help.Please keep in mind that when a child needs vitamin supplementation, it does not mean that they are eating a poor diet. There are many medical reasons why a child could be deficient in all vitamins (intestinal infections, malabsorption disorders, genetic disorders) or deficient in a critical subset of nutrients (pyroluria, allergies, viral infections, bacterial infections, stress, long-term medications such as pyschotropics, genetic disorders), etc. Once a supplement plan works, you will really need to spend the time to find out why the child was vitamin deficient in the first place, to make sure you can eliminate allergies, intestinal parasites or infections. There isn't much that can be done if the true nature is genetic, but a treatment, even if it is for life, is better than no treatment at all.
Good luck to everyone.
Article, detailing pyoluria + treatmentthe article's @http://www.digitalnaturopath.com/cond/C371961.html it's hard to follow with all the icons and formatting deleted on here.. but..,
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Pyroluria
Signs, symptoms and indicators | Conditions that suggest it | Contributing risk factors | Other conditions that may be present | It can lead to... | RecommendationsHealth problems rarely occur in isolation or for obvious reasons
Pyroluria is a familial disorder which occurs with stress, where an above-average amount of a substance consisting of "kryptopyrroles" circulate in the body. The substance is harmless in itself, but high levels of these pyrrolles systemically bind with B6 and zinc, preventing the use of these essential nutrients in the brain and body. The result is a myriad of symptoms, including severe inner tension, ongoing anxiety, poor stress control, fearfulness, and sometimes episodic anger.Please note that it is extremely important to obtain an accurate diagnosis before trying to find a cure. Many diseases and conditions share common symptoms: if you treat yourself for the wrong illness or a specific symptom of a complex disease, you may delay legitimate treatment of a serious underlying problem. In other words, the greatest danger in self-treatment may be self-diagnosis. If you do not know what you really have, you can not treat it!
Knowing how difficult it is to weed out misinformation and piece together countless facts in order to see the "big picture", we now provide simple, inexpensive online access to The Analyst™. Used by doctors and patients alike, The Analyst™ is a computerized diagnostic tool that sits on a vast accumulation of knowledge and research. By combining thousands of connections between signs, symptoms, risk factors, conditions and treatments, The Analyst™ will help to build an accurate picture of your current health status, the risks you are running and courses of action (including appropriate lab testing) that should be considered. Full information is available here.
Often such people have pale skin that easily burns, eyes that are sensitive to light, white flecks/marks on their nails, and stretch marks on their skin. They tire easily, are anemic, have poor dream recall, prefer not to eat breakfast, notice upper abdominal pain when stressed, and experience a "stitch" in their side if they run. They have a tendency to become loners as they age. Mental symptoms are aggravated when undergoing stress. In fact, pyroluria flares up when the individual is undergoing prolonged stress, such as during a chronic and debilitating illness.
Pyroluria may occur along with other imbalances as seen in some subtypes of schizophrenia such as histapenia (low histamine), histadelia (high histamine), high copper levels or cerebral allergies. It is the primary imbalance for 20% of schizophrenics.
Alcohol use is one way for pyrolurics to shut off their anxiety, feel more sociable, de-stress, and experience a short time when they feel more normal. Without a knowledge of this chemical imbalance, those who try to quit alcohol use must face coexisting with their symptoms. If additional antianxiety support is needed, GABA, tryptophan, chromium and inositol should be considered.
There is a urine lab test available which measures levels of kryptopyrroles. Any alcoholic, or anyone with symptoms indicating the possibility of this condition should have the lab test done.
Pyroluria is treated by restoring levels of vitamin B6 and zinc so that this double deficiency is corrected. Supplementation with vitamin B6 until daily dream recall returns (a normal phenomenon) as well as with zinc and manganese needs to be continued daily. With zinc, manganese and vitamin B6 therapy the pyroluric patient may start to respond in 24 hours and certainly some progress is noted within one week. However, total recovery may take three to four months. The biochemical imbalance and symptoms will usually recur within one to two weeks if the nutritional program is stopped. [Pfeiffer, 1974]
Signs, symptoms & indicators of Pyroluria:
Lifestyle Being prone to 'stitches'Symptoms - Environment
Rapid sunburning tendencySymptoms - Food - General
Weak appetiteSymptoms - Food - Preferences
Never/rarely eating breakfast or regular avoidance of breakfastSymptoms - Gas-Int - General
Unexplained nauseaSymptoms - General
Fatigue on light exertionSymptoms - Head - Eyes/Ocular
(High) sensitivity to bright lightSymptoms - Mind - Emotional
Adverse reaction to stress Pyrolurics are devastated by stresses including physical injury, emotional trauma, illness, sleep deprivation, etc.Emotional instability
Symptoms - Mind - General
Being an antisocial personSymptoms - Nails
White spots on fingernails Leukonychia punctata (white spots) are a sign of pyroluria.
Symptoms - Skeletal
Joint pain/swelling/stiffnessSymptoms - Skin - General
Lighter/paler skin colorSymptoms - Sleep
Forgetting dreams
Conditions that suggest Pyroluria:
Addictions Alcohol-related Problems As many as one-third to one-half of alcoholics have the genetic, chemical imbalance called pyroluria.
Allergy
Allergies Indoor
Allergic Rhinitis / Hay FeverCirculation
Anemia (Uncommon Nutritional) Pyrolurics are generally anemic.
Mental
Schizophrenia Approximately 20% of all schizophrenics have pyroluria as their primary imbalance. Symptoms are many including a sweet, fruity breath and body odor. The affected person has a tendency to have insight (understand they have mental problems).Bipolar Disorder, Manic-Depressive About 18% of those with bipolar disorder are also pyroluric.
Anxiety Pyroluria is a known biochemical marker for life long anxiety symptoms. According to one alcoholism treatment center, one-third to one-half of alcoholics treated have this marker. High levels of pyrrolles systematically bind to B6 and zinc, preventing the use of these nutrients in the body and brain. The result is a myriad of symptoms, including severe inner tension, ongoing anxiety, poor stress control, fearfulness, and sometimes episodic anger.
Paranoia/Paranoid Personality Disorder Pyroluria can cause hallucinations, delusions and paranoia.
Panic Attacks
DepressionMetabolic
HypoglycemiaNervous System
Motion SicknessNutrients
Zinc Requirement Pyroluria is caused by an overproduction of kryptopyrrole during hemoglobin synthesis, which chemically combines with vitamin B6 and zinc, resulting in their excretion and a deficiency of both of these essential nutrients.Vitamin B6 Requirement A functional pyridoxine deficiency is common in pyroluria (often seen in alcoholics), due not so much to inadequate intake as impaired conversion to its active form, pyridoxal-5-phosphate, and enhanced degradation.
Risk factors for Pyroluria:
Symptoms - Food - Beverages Being a recovered alcoholic
Moderate/low/high alcohol consumption A higher than normal anxiety level leads many with pyroluria to drink alcohol. As many as one-third to one-half of alcoholics have this genetic chemical imbalance.
Symptoms - Gas-Int - General
History of unexplained nauseaSymptoms - Mind - Emotional
Small social support group size or no social support group
Pyroluria suggests the following may be present:
Nutrients Counter-indicators:
EFA (Essential Fatty Acid) Type 3 Requirement Omega 3 fatty acids are potentially harmful supplements in someone with pyroluria. Omega 3s can worsen mental symptoms in bipolar or schizophrenic patients, if they have a pyrrole disorder.Normally the desaturase enzymes which metabolize EFAs have a higher affinity for the n3 (Omega3) series. It has been proposed that in schizophrenia mutant desaturases are present which prefer the n6 series. This change would account for the low levels of linoleic acid, dihomogammalinolenic acid and 1 series prostaglandins which have been reported in schizophrenia. It would also explain the high levels of arachidonic and alpha-linolenic acids and the recently described therapeutic response to alpha-linolenic acid. The abnormal pattern in n6 series EFAs in schizophrenics can almost exactly be imitated in rats by depriving them of n3 EFAs. This is the nearest experimental equivalent to an inability to metabolize EFAs because of an enzyme defect. Heterozygotes carrying such a mutant gene would have an advantage over either form of homozygote since they would be better able to cope with variations in dietary intake of n3 and n6 EFAs. [Schizophrenia: the role of abnormal essential fatty acid and prostaglandin metabolism. Horrobin DF, Huang YS. Med Hypotheses. 1983 Mar;10(3): pp329-36]
Pyroluric mental patients will usually get worse if given fish oils, DHA, EPA, etc (alpha-linolenic acid metabolites). They thrive on Primrose Oil, a good source of AA and other omega 6s.
Pyroluria can lead to:
Circulation Anemia (Uncommon Nutritional) Pyrolurics are generally anemic.
Mental
DepressionNutrients
Zinc Requirement Pyroluria is caused by an overproduction of kryptopyrrole during hemoglobin synthesis, which chemically combines with vitamin B6 and zinc, resulting in their excretion and a deficiency of both of these essential nutrients.Vitamin B6 Requirement A functional pyridoxine deficiency is common in pyroluria (often seen in alcoholics), due not so much to inadequate intake as impaired conversion to its active form, pyridoxal-5-phosphate, and enhanced degradation.
Recommendations for Pyroluria:
Amino Acid / Protein Not recommended:
HistidineLab Tests/Rule-Outs
Test for Urine Kryptopyrroles People with pyroluria produce excess amounts of a byproduct from hemoglobin synthesis, called kryptopyrrole (2,4-dimethyl-3-ethylpyrrole) or hemepyrrole. In these people an excess amount of kryptopyrrole is found in the urine. The most accurate test for pyroluria directly measures urine kryptopyrrole’s.Test for Manganese Levels
Test Essential Fatty Acid ProfileMineral
Zinc Kryptopyrrole is a reacting agent which combines irreversibly with active vitamin B6. The resulting molecule then chelates zinc, the combined product appearing in the urine. The whole syndrome is stress-induced so the susceptible patient, when stressed, quickly becomes vitamin B6 and zinc deficient.Manganese Manganese is poorly absorbed, so the oral administration of large doses of manganese gluconate daily for a long period of time may be required. Manganese levels can be tested for in red blood cells. Daily doses of 50mg or more may be required over a long period to bring these levels to within the normal range.
Not recommended:
CopperVitamins
Vitamin B6 (Pyridoxine) Pyrolurics commonly respond within a few months to B6, zinc and manganese. The nutrient dosage usually must be increased when the pyroluric patient is under increased stress.
poster:temoigneur
thread:629412
URL: http://www.dr-bob.org/babble/alter/20060313/msgs/629412.html