Posted by joebob on May 16, 2005, at 20:16:57
i just decided days ago to try the regimin for pyroluria and it seems to have helped a lot so far...i had discounted the info for a while but it kept coming up...so i upped my zinc, p5p, and epo and felt better within 3 days...
for those unfamiliar with the subject here's an old posting from hasty pastry:
Vitamin Success and Urine Testing
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
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.