![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 65. This is the beginning of the thread.
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
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.
Posted by joebob on May 16, 2005, at 20:18:56
In reply to pyroluria supps...my experience...it's WORKING !!!, posted by joebob on May 16, 2005, at 20:16:57
on the appropriate amounts of each supp including manganese, and i am wondering if i should include the amounts in my multiple, when i manage to take it
thanks,
joebob
Posted by tealady on May 23, 2005, at 17:16:42
In reply to pyroluria supps...my experience...it's WORKING !!!, posted by joebob on May 16, 2005, at 20:16:57
Hi Joebob,
I respond well to most those supps, and I sometimes find myself preferring foods high in glutathione, and I've never taken much Mn..I do have an old bottle of them though, so there must have been some time in the past when I figured I needed it.(poor memory)
Evening primrose oil, P5P,and zinc are definitely my favs probably in that order and have been for over 20 years. I like magnesium at times too, actually I take a magnesium/P5P combo usually.
I also suspect I have something up with those cytochrome P450s as I metabolize some things differently probably.a question..what is reduced glutathione?
Jan
Posted by joebob on May 24, 2005, at 21:38:37
In reply to Re: pyroluria supps...my experience...it's WORKING !!! » joebob, posted by tealady on May 23, 2005, at 17:16:42
Posted by Larry Hoover on May 24, 2005, at 22:37:11
In reply to larry, if you read this i'd appreciate your ideas, posted by joebob on May 16, 2005, at 20:18:56
> on the appropriate amounts of each supp including manganese, and i am wondering if i should include the amounts in my multiple, when i manage to take it
>
> thanks,
> joebobI'm not convinced that pyrroluria is a real disorder. I'll check the mineral ratios soon. I'm off to bed now, and I have a busy couple of days ahead.
Lar
Posted by Larry Hoover on May 24, 2005, at 22:59:29
In reply to Re: pyroluria supps...my experience...it's WORKING !!! » joebob, posted by tealady on May 23, 2005, at 17:16:42
> a question..what is reduced glutathione?
>
> JanGlutathione is oxidized at the sulfhydryl (thiol) functional group of the cysteine residue.
Reduced glutathione (GSH) is glutathione ready to act. When it is oxidized, it forms a sulphur bridge (cystine bond) with another GSH molecule, forming a GSH dimer called GSSG. GSSG is then enzymatically reduced (requiring ATP) back to two GSH molecules.
Here's a nice little summary article:
http://www.thorne.com/pdf/journal/6-6/glutathione_monograph.pdfLar
P.S. Glutathione supplements are a waste of money. They're simply digested in the stomach. The rate limiting molecule in glutathione synthesis is cysteine. In fact, cysteine can reduce GSSG. So, cysteine can both go to form glutathione, and it can recycle it.
The article mentions some GSH transporters in the intestine. I do not believe oral GSH makes it that far, although others conclude that it does. I believe, instead, that the brush border secretes GSH into the lumen, and actively transports GSH and GSSG, to control concentrations and availability. Anyway....off to bed.
Lar
Posted by joebob on May 26, 2005, at 22:51:16
In reply to Re: larry, if you read this i'd appreciate your ideas » joebob, posted by Larry Hoover on May 24, 2005, at 22:37:11
Posted by buddhi on July 30, 2005, at 13:05:51
In reply to pyroluria supps...my experience...it's WORKING !!!, 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
>
> 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.
>
>Wondering what brands and how much of each are you taking and what did this do for you????? thank you you can write back on board or email amy@pause.com
Posted by KarenRB53 on August 17, 2006, at 9:08:23
In reply to question about supplements for you joebob » joebob, posted by buddhi on July 30, 2005, at 13:05:51
Wondered if anyone had any updates on pyroluria.
Thanks, Karen
Posted by Penlady on July 21, 2007, at 13:06:01
In reply to Re: larry, if you read this i'd appreciate your ideas » joebob, posted by Larry Hoover on May 24, 2005, at 22:37:11
Larry said "I'm not convinced that pyrroluria is a real disorder. I'll check the mineral ratios soon. I'm off to bed now, and I have a busy couple of days ahead.
Lar"I wish I could convince you there is such a thing. I thought I was having a nervous breakdown,was having personality changes, then started looking for answers, and realized that everyone in my family has the symptoms of Pyroluria, such as becoming more of a loner when getting older, anxiety,great internal tension, problems with sugar metabolism, allergies, no desire for breakfast, light sensitivity, loud noise sensitivity, poor ability to cope with stress, personality changes during prolonged periods of stress, inability to tolerate prescription medicine, depression that makes events look catastrophic. Within 3 days of taking B6 and zinc, my old personality was back, with only occasional anxiety because of the amount of stress our whole family is under. My mother also took the vitamins and felt IMMEDIATE relief. I am still trying to talk my brother into it, and I wonder how different many of our family member's lives could have been without the horrid depression and hermit-like behavior that ruined a good, useful life.
I am looking everywhere and can't find the answer to this. I keep getting told that too much zinc can throw off the other minerals in your body and can cause serious side effects. I am wondering how much zinc is too much, and I am hoping I can raise my zinc and B6 for more relief. Any ideas would be appreciated.
Penlady
Posted by Larry Hoover on July 31, 2007, at 10:51:04
In reply to reply to Larry, and How much zinc is toxic?, posted by Penlady on July 21, 2007, at 13:06:01
>
> Larry said "I'm not convinced that pyrroluria is a real disorder. I'll check the mineral ratios soon. I'm off to bed now, and I have a busy couple of days ahead.
> Lar"
>
> I wish I could convince you there is such a thing.Well, I'm accepting of the possible consequence of excreting pyrroles and thereby losing zinc in urine. My skepticism is with the broader syndrome that is collected under the rubric "pyroluria" (sic). Notwithstanding my concerns, this is still a nice article: http://www.kryptopyrrole.com/
> I thought I was having a nervous breakdown,was having personality changes, then started looking for answers, and realized that everyone in my family has the symptoms of Pyroluria, such as becoming more of a loner when getting older, anxiety,great internal tension, problems with sugar metabolism, allergies, no desire for breakfast, light sensitivity, loud noise sensitivity, poor ability to cope with stress, personality changes during prolonged periods of stress, inability to tolerate prescription medicine, depression that makes events look catastrophic.
Whoa! Have you been observing me? <Spock eyebrow>
> Within 3 days of taking B6 and zinc, my old personality was back, with only occasional anxiety because of the amount of stress our whole family is under. My mother also took the vitamins and felt IMMEDIATE relief. I am still trying to talk my brother into it, and I wonder how different many of our family member's lives could have been without the horrid depression and hermit-like behavior that ruined a good, useful life.
HIgh stress reactivity is a bitch.
> I am looking everywhere and can't find the answer to this. I keep getting told that too much zinc can throw off the other minerals in your body and can cause serious side effects. I am wondering how much zinc is too much, and I am hoping I can raise my zinc and B6 for more relief. Any ideas would be appreciated.
> PenladyWell, I can certainly help you with this concern.
High zinc intake will inhibit copper uptake from the gut. Both minerals are absorbed only from their salts (i.e. the soluble forms, not the elemental mineral). The copper storage disease, Wilson's disease (analogous to iron and hemachromatosis), is treated with high zinc intake. It is generally accepted that significant inhibition of copper uptake begins around about 80 mg/day zinc. Full blockade probably requires closer to 150 or 200 mg/day. You can probably safely take 50 mg/day zinc, without concern about copper.
Give your body a chance to adapt to the higher zinc levels. There are four transporters that we know of, that pump zinc from the gut (one of which is really an iron transporter, so iron deficiency anemia might be a long-term concern), and yours might be highly upregulated.
I know I've got a zinc problem, but I always assumed it was an uptake issue. Maybe it's at the other end of the stream.
Lar
Posted by KayeBaby on August 1, 2007, at 16:22:36
In reply to Re: reply to Larry, and How much zinc is toxic? » Penlady, posted by Larry Hoover on July 31, 2007, at 10:51:04
I noticed a big difference in a couple of days after starting 100mg B6 and 50mg zinc. I have the same constellation of symptoms.
I have not been tested for pyrolurria but these supps help noticably. I also stopped fish oil and started evening primrose.
There must be something to it.
Peace,
Kaye
Posted by jcc on August 6, 2007, at 12:30:42
In reply to pyroluria supps...my experience...it's WORKING !!!, posted by joebob on May 16, 2005, at 20:16:57
I found this by googling "pyroluria". My daughter tested positive for pyroluria many years ago. I had her tested after reading about it on BT, posts by FJ. My daughter had a history of seizures, mood swings, gluten sensitivity and more. Still not sure how the gluten sensitivity fits, but it seems to fit somehow.
I just wanted to add that while it took us a couple of years to connect with a doctor who understood it, my daughter's response to the supplements was remarkable. Her symptoms of anxiety/depression spiraled downward during her first year of college.. and in desperation I contacted one of the experts in this area... who was very gracious in helping us via the Internet.
It is so difficult to find doctors who understand or accept this condition. Our own pediatrican just said, "its very controversial". Well, it may be, but because the symptoms fit, the test results fit, and most importantly, the treatment worked...I believe in it.
There is a new Pyroluria forum opened recently on the Gluten Free and Beyond site. The forum is absolutely free... no ads or anything. I just wanted to let others interested in Pyroluria know about that!
http://www.glutenfreeandbeyond.org/forum/viewforum.php?f=30
Cara
Posted by jcc on August 6, 2007, at 12:42:49
In reply to Re: reply to Larry, and How much zinc is toxic? » Penlady, posted by Larry Hoover on July 31, 2007, at 10:51:04
I think I would agree that zinc in the 40-50mg amount would be safe.
It was recommended by a doctor who treats pyroluria that my daughter begin with 90mg of zinc, ... with follow up testing after 3 months to monitor the zinc/copper ratio. I actually was never quite comfortable with zinc in that range, and settled on less... and it seemed to work.
Because most doctors don't recognize this condition, it can be hard to find follow up. Another reason we settled on less zinc... so I don't need to worry about overdoing.
We also use the P5P type of B6, and I don't worry at all about using 100-200mg of B6. Anyone concerned about the safety of B6 can check the right bar on this page about the safety of B6 (PDR and other references).
http://jccglutenfree.googlepages.com/vitaminb6
Posted by Ed O`Flaherty on August 14, 2007, at 5:32:59
In reply to Re: reply to Larry, and How much zinc is toxic? » Penlady, posted by Larry Hoover on July 31, 2007, at 10:51:04
When I test patients for mental health problems my list of tests normally includes plasma zinc,serum copper,ceruloplamin and quite often I check urine for pyrroles.Some patients with pyrolluria will need at least 100mg of zinc daily to function normally.
Posted by Maggie1998 on August 14, 2007, at 13:54:48
In reply to pyroluria supps...my experience...it's WORKING !!!, posted by joebob on May 16, 2005, at 20:16:57
I'm glad you found success with this - we have too with our kids - both of whom tested positive for pyroluria by Direct Healthcare Access II lab in Mount Prospect, IL. Their website is http://www.pyroluriatesting.com
They do all the pyroluria testing for Pfiffer clinic. If you people don't have a doc to order and interpret the test results, the lab even has their own doc to do that for an additional $95. Dr. Norman (the consult doc) used to work (or maybe still does??) for Pfeiffer and does a great job figuring out supplements and dosing.
Enjoy your new found freedom - its awsome that the word is getting out about this highly treatable disorder.
M> 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
>
> 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.
>
>
Posted by nolagirl on August 22, 2007, at 9:28:51
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by Maggie1998 on August 14, 2007, at 13:54:48
WOW! I stumbled upon this thread a week and a half ago. I looked into pyroluria and realized that I had almost all of the symptoms. The lack of dream recall was the kicker. I used to have quite an active dream life till about 7 years ago and then poof. I have also become much more of a loner as I am aging which is another red flag with pyroluria.
I was diagnosed bi-polar twenty years ago. When I didn't respond well to meds, pdocs would change my diagnosis. It has been depression, agitated depression, add and depression, GAD, anhedonia, PTSD and the list goes on. None of the meds prescribed ever really helped and I have just gotten worse with age. I have had my thyroid and hormones tested and always came out normal.
After reading this thread and everything else I could find on Pyroluria, I decided to give the B6 and zinc a try. Amazing! Within the first few days, I was remembering my dreams. The doom and gloom phantom fears that have plagued the past decade of my life are lifting. I am exercising! I haven't had the strength or motivation to do that in years!! I am listening to music and dancing around my house instead of lying on the couch for 12 hrs a day watching Law & Order reruns. And last, but not least, my libido is coming back. All of this after only about 10 days on the B6 and zinc.
I can't believe that none of the dozens of pdocs that I have seen over the past 20 yrs ever mentioned this. I will keep y'all posted.
Posted by KarenRB53 on August 22, 2007, at 20:54:38
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by nolagirl on August 22, 2007, at 9:28:51
Can someone just get their zinc and B6 levels checked instead of going to the expense of pyroluria testing?
Posted by KayeBaby on August 26, 2007, at 14:09:29
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by nolagirl on August 22, 2007, at 9:28:51
Try the P-5-P form of B6 for a portion of your requirement (if you haven't already) it has less chance of negative side effects and I feel like it works better for me. I do take both forms of B6.
How much zinc are you taking?
Also, if anyone knows.....I had noticable increase in pleasant dreaming at first with the addition of B6 but it has leveled off. Does this indicate that I should increase my B6? I read to take as much as you need to produce app. 3 pleasant recalled dreams per week.
Thanks!
Kaye
Posted by nolagirl on August 26, 2007, at 16:08:24
In reply to Re: pyroluria supps...my experience...it's WORKING !!! » nolagirl, posted by KayeBaby on August 26, 2007, at 14:09:29
I am taking 300mg of B6 (150 p-5-p & 150 regular b6) and 60mgs zinc. I too had great dreams the first week and now they have become fuzzy again. At least I can recall dreaming something even if just a fragment.
I am not sure about uping the doses to get clearer dream recall. I believe that there is an interview online somewhere with a female doc where that is suggested. I am just going to keep on with what I am doing now and see how I fair. I am not working with a doctor and am experimenting.
It is pretty amazing the difference that it is making in my life. I just got home from biking 4 miles. That was not possible before I started treating myself for pyroluria. I am beginning to feel hopeful and optimistic about life and I had given up on that over the past decade. I hope that the same works for you!
Nolagirl
Posted by KayeBaby on August 26, 2007, at 23:46:39
In reply to Kaye - re pryoluria, posted by nolagirl on August 26, 2007, at 16:08:24
That is great to hear!
I am only taking maybe 100 or so total B6. I think I will bump that up some and see how it does me. I am experimenting too. Started this early this spring and have felt nothing but benefits.
Keep me posted and I'll do the same.
Peace,
Kaye
Posted by Ed O`Flaherty on August 27, 2007, at 11:12:33
In reply to Re: Kaye - re pryoluria » nolagirl, posted by KayeBaby on August 26, 2007, at 23:46:39
I am a physician in Dublin and I see many cases of pyroluria.One can get the plasma zinc done in most hospitals. The functional (EGOT) version of B6 should be done rather than a plain B6.Not many labs do that.Neither do many labs do pyroluria,which incidentally may be normal if the person is already on an antipsychotic.Minor elevation above the normal level is common too. If pyroluria is diagnosed 50-100mg of zinc and occasionally more than that are required.200-400mg B6 might be needed,at least part of which should be the P5P verion of B6.Evening primrose oil may help too as will other antioxidants like vit C and E.Magnesium is often added as is manganese. A large dose of fish oil might not be a good idea here.An interesting feature of pyroluria is that recovery often starts quickly,sometimes in as little as a week. I notice at the top of this page the name "National Center for Complementary and Alternative Medicine ". They have no reference in their database to pyroluria,histadelia ot histapenia, the 3 most useful terms in biochemical psychiatry in my experience.Much of my knowledge on pyroluria came from the Pfeiffer Center in Chicago (www.hriptc.org) who organised a course for doctors in Australia which I found really useful.There are some more more details on my website at www.omega3.20megsfree.com
Posted by nolagirl on August 27, 2007, at 11:46:43
In reply to re pryoluria, posted by Ed O`Flaherty on August 27, 2007, at 11:12:33
Thanks Ed!
I wish that more docs were like you. I wandered around from pdoc to pdoc for the past 20yrs. relaying near all the symptoms of pyroluria. Not one mentioned it. If I hadn't stumbled onto this thread and decided to do some experimenting, I would still be miserable. I have had a more positve response to the b6 and zinc than I ever had to psych meds. In your experience, after the initial response, do your patience continue to improve with treatment?Nolagirl
Posted by KarenRB53 on August 27, 2007, at 12:49:22
In reply to Re: re pryoluria » Ed O`Flaherty, posted by nolagirl on August 27, 2007, at 11:46:43
> Thanks Ed!
>
>
> I wish that more docs were like you. I wandered around from pdoc to pdoc for the past 20yrs. relaying near all the symptoms of pyroluria. Not one mentioned it. If I hadn't stumbled onto this thread and decided to do some experimenting, I would still be miserable. I have had a more positve response to the b6 and zinc than I ever had to psych meds. In your experience, after the initial response, do your patience continue to improve with treatment?
>
> Nolagirl
>I'm on an antidepressant(not working very well), in your opinion should I stay on the antidepressant and add the B6 and zinc or does one have to be off of antidepressants to know if this works or not?
Thanks, Karen
Posted by Ed O`Flaherty on August 27, 2007, at 13:44:22
In reply to Re: re pryoluria, posted by KarenRB53 on August 27, 2007, at 12:49:22
I have patients with this condition who have been well for several years now and some of them have returned to college and done well. Those with a severe version which can lead to psychosis will still need some medication and I let the level be decided by the psychiatrist-it is usually reduced considerably though.Most of those on antidepressants will stay well if they stay on the nutrients only but they should wait for a few months combining nutrients with medication before they see if that can be set free of medication.
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