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Dr. Bob is Robert Hsiung, MD,
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Posted by nolagirl on September 8, 2007, at 13:11:52
In reply to Re: re pryoluria » nolagirl, posted by KayeBaby on September 6, 2007, at 23:57:34
Hi Kaye,
Great news! My PMS was better too.
I was in a car wreck on Wednesday and actually handled it like a quasi sane person. Family and friends commented how happy they were that this didn't happen a month ago so they didn't have to hide the razor blades. I know this is a result of the supps. I am also taking the maganese, magnesium and evening primrose. Fish oil just makes me more depressed.
It isn't the end all be all cure. I have been sick for along time and have developed self-defeating behaviors along the way. Those I think will take time, courage and discipline to change. Living became so overwhelming that I just avoided everything. I am sure you can relate! At least we have the energy for the clean up!!
Here's hoping that we keep making progress. I look forward to keeping eachother in the loop.
Hugs,
Cari
Posted by KayeBaby on September 8, 2007, at 15:32:47
In reply to Re: re pryoluria » KayeBaby, posted by nolagirl on September 8, 2007, at 13:11:52
Yes. I know what you mean about avoiding. Seemed like any little thing was just completely overwhelming to me.
I have developed a terrible habit of hiding out in my bedroom. I used to love people and socializing but it got to where any interaction just exhausted me. Even good ones. I dropped a lot of people that I cared about becuase I just did not have the energy to interact with them. I felt like I was always making excuses and it seemed that all I ever could see was dissappointment in the eyes of those I love. Heartbreaking.
I pray I continue to grow stonger and more resiliant so once again I can enjoy my loved ones. Maybe even make a new friend or two....
My coping methods have become bad habits and I am working on breaking them.
How much manganese do you take? I quit the fish oil long ago as I noticed zero benefit and possible some negative effects. Contrary to all the good studies out there-it is not for me. The cod liver oil I am taking for the A and D vitamins. I too like EPO as my main oil.
Have you tried regualr niacin and if so, how much does it take for you to flush and how intense is it? Just curious.
Thanks for sharing your experiences with me. It is helpful beyond compare.
Kaye
Posted by nolagirl on September 9, 2007, at 9:36:03
In reply to Re: re pryoluria » nolagirl, posted by KayeBaby on September 8, 2007, at 15:32:47
Hi Kaye,
Yep, you're telling my story. I identifity with everything. I have pretty much spent the past 7 years in hiding, filled with fear.
I am hopeful about the supps. I am still anxious and have a hard time keeping focus and following through on things. This may get better the longer I am taking the supps but, even if I doesn't, I may be able to tolerate a psych med. The side effects always out weighted the benefits.
It's tuff right now because, even though I am feeling better, the wreckage of my inaction over the past few years seems monumental. Oh well, all we can do is keep praying and taking it a step at a time.
right now I'm taking:
200 mgs b6
200 mgs p-5-p
60 mgs zinc
300 mgs magnesium
10 mgs maganese
1500 mgs epoI occasionally add niacinimide but haven't taken niacin in awhile. Why are you adding niacin? Just curious, I can't remember why I used to take it.
Are you excersising? I have to get back to it cause it seems to really increase the benefits of the supps and I was less anxious.
Well it looks like both of us have made a new friend! I know that it is helping me to know how you are progressing.
Hugs,
Nolagirl
Posted by Ed O`Flaherty on September 9, 2007, at 17:32:11
In reply to Re: re pryoluria » KayeBaby, posted by nolagirl on September 9, 2007, at 9:36:03
My own experience of treating Pyroluria is that 50mg of zinc is seldom sufficient. An Egot test of B6 would be worthwhile too.I would routinely have plasma zinc,serum copper and ceruloplamin done to get an idea of the proper figure for zinc which is usually 100mg or more.Some patients will require a small amount of omega-3 too and I would do a test for essential fatty acids for that and probably give it at a different time of day to the EPO. Vitamin C at 1000mg twice daily and preferably natural vitamin E 400u twice daily are often used as well.
Posted by nolvas on September 9, 2007, at 18:58:43
In reply to Re: re pryoluria, posted by Ed O`Flaherty on September 9, 2007, at 17:32:11
Hi Ed. I'm vegetarian and I won't eat fish. Do you still think I can benefit from taking Omega 3 in the form of flax seed, a blend such as Udo's Oil?
Being a vegetarian I don't have a direct source of DHA and EPA Omega 3 oils and have to obtain them from conversion of ALA, which I believe isn't very efficient. I live in the UK it would be interesting to get a test done for Pyroluria. Can you recommend any good places in the UK? The urine sample has to be preserved which I imagine isn't easy as well.
Posted by jcc on September 10, 2007, at 8:03:29
In reply to Re: re pryoluria, posted by nolvas on September 9, 2007, at 18:58:43
I found this lab
http://www.biolab.co.uk/listed on this site~
http://www.nutritional-healing.com.au/content/articles-content.php?heading=PyroluriaWhen we had my daughter tested several years ago (in the US), part of the instructions where to freeze the specimen overnight before morning pick up.
Cara
Posted by Ed O`Flaherty on September 10, 2007, at 9:24:57
In reply to Re: re pryoluria, posted by jcc on September 10, 2007, at 8:03:29
I live in Dublin but I send urine samples for pyroluria to Biolab in London in a special container.Maybe your doctor might help.
Posted by nolvas on September 10, 2007, at 15:37:45
In reply to Re: re pryoluria, posted by Ed O`Flaherty on September 10, 2007, at 9:24:57
Ok thanks I will give biolab a call. They might be able to test for other things as well and put my mind at rest. My doctor has tested my thyroid and told me that my intense anxiety is not organic but psychogenic. I've had blood tests for allergies and they came back negative. I've heard the York test might be good for allergy testing but a Which report said it wasn't. Anyway I believe the agoraphobia/intense anxiety is partially caused by an organic condition or nutritional problem. It's so difficult to find out it seems.
Posted by Jimmyboy on October 6, 2007, at 9:58:35
In reply to Re: re pryoluria, posted by nolvas on September 10, 2007, at 15:37:45
f someone doesn't mind can you tell me the treatment for this condition ?
I know B6, Zinc and Manganese, Vitamin C , what else is recommended?
JB
Posted by nolagirl on October 6, 2007, at 10:44:55
In reply to Re: re pryoluria, posted by Jimmyboy on October 6, 2007, at 9:58:35
i take
300 mgs of B6 - 150 of p-5-p and 150 straight B6
150 mgs of zinc
1500 mgs of evening of primrose oil
1000 mgs vit C
1000 of vit E
300 mgs of magnesium
30 mgs of maganeseyou need to paly with the dosage of b6 and zinc to see what works for you. i have gone from 400 to 300mgs b6 and from 50 to 150 of zinc. it really amazing how much better you will feel with the supps if you are pyroluric. good luck!
nolagirl
Posted by Jimmyboy on October 7, 2007, at 15:12:08
In reply to Re: re pryoluria » Jimmyboy, posted by nolagirl on October 6, 2007, at 10:44:55
Thank you so much for giving me your regimen..
I was wondering a couple of things.. you stated earlier in the thread that it has helped with depression, did you also have any anxiety and if so did the supplementation help with that also?
also, how long did it take for you to notice that it helped?
I appreciate your time and info
JB
Posted by nolagirl on October 7, 2007, at 15:45:29
In reply to Re: re pryoluria » nolagirl, posted by Jimmyboy on October 7, 2007, at 15:12:08
i have been taking these for a few months. the improvement was within the first week. i have noticed less anxiety. if you are, in fact, pyroluric you should see a difference pretty soon. here is a good link with more info.
http://www.healthrecovery.com/HRC_2006/Depression_06/D_Hide_In_Closet.htm
good luck!
Posted by Jimmyboy on October 7, 2007, at 15:55:23
In reply to Re: re pryoluria » Jimmyboy, posted by nolagirl on October 7, 2007, at 15:45:29
Thanks, I have been taking zinc 100 mg and , b6 and manganese and Vitamin C for a few days and really think that I feel better, I was just wondering if it was possible to start feeling better that quickly or just my imagination ,
ThanksJB
Posted by Jimmyboy on October 12, 2007, at 11:14:26
In reply to Re: re pryoluria » Jimmyboy, posted by nolagirl on October 7, 2007, at 15:45:29
For those of you who have been having success with your regimen, is it still working for you? I would love to hear some updates from people
JB
Posted by nolagirl on October 13, 2007, at 13:44:16
In reply to Re: re pryoluria - Any updates?, posted by Jimmyboy on October 12, 2007, at 11:14:26
i have seen really great results within the past few months. i have adjusted the doses now and then and figured that the b6 is to energizing to take at night. i boosted my zinc up for awhile and that has kept a pretty steady state. i skipped a few days and noticed myself worrying too much again. will restart today. i am still isolating and hope that this symptom will shift with time. i know that i was sick for a long time and am sure that it will take a while to mend.
nolagirl
Posted by Jimmyboy on October 14, 2007, at 15:22:42
In reply to Re: re pryoluria - Any updates? » Jimmyboy, posted by nolagirl on October 13, 2007, at 13:44:16
Nolagirl-
Glad you are having coninuing success, I am getting a battery of blood tests next week, including pyroluria , so I hope I can isolate my problem too. I have tried every anti-D and bipolar drug combo for years and nothing works, so trying an alternative approach certainly can't hurt. Good luck
JB
Posted by nolagirl on October 15, 2007, at 8:36:12
In reply to Re: re pryoluria - Any updates?, posted by Jimmyboy on October 14, 2007, at 15:22:42
I hope your tests indicate something treatable with supplements. I too have been on almost every anti-depreesant and mood stabilizer. After an initial help they all caused more problems than was worth taking them. While taking the supps for pyroluria hasn't fixed everything, I am 75% better than before. Good luck to you too!
Posted by Awaywego on May 4, 2008, at 17:42:49
In reply to pyroluria supps...my experience...it's WORKING !!!, posted by joebob on May 16, 2005, at 20:16:57
Hi, after 30 years I just found out I have Pyroulia - Even though it has been around for 40 years Dr just do not know about it- I finally feel better - We must let people know about this condition as 30-40% of people with mental health issues have this condition-
Posted by jahxman on June 30, 2010, at 14:42:42
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by Awaywego on May 4, 2008, at 17:42:49
Just wondering if there are folks out there treating this with B6 and Zinc still, and what their longer term experiences have been.
I tested quite high on the urine test for this a few years ago, and also quite high as a child. I have taken the supplements at times consistently for a few years at a time.
I can't really say that they helped, and I don't think they hurt - but I am an example of someone who consistently tests high on this urine test (I've had it done a few times over the course of my life, the first time when I was a child) and who has taken the supplements and not found much relief there. Eating a balanced and whole foods diet has made the most difference for me.
I was tested as a child because my oldest brother, who had been diagnosed schizophrenic, was diagnosed by Dr. Carl Pfieffer as having pyroluria, and took the supplements for many years.
He did feel that they helped him some, but ultimately he did have to be permanently hospitalized.
Any other reports?
Posted by Lao Tzu on July 2, 2010, at 9:39:01
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by jahxman on June 30, 2010, at 14:42:42
I am diagnosed bipolar/schizophrenic. I do okay on meds, but the supplements for pyroluria are helpful. Yes, B6 and zinc picolinate do help along with other vitamins, minerals, and essential fatty acids. Whole foods diet? I never thought of that. What kinds of foods do you have in your diet? I think some people may indeed by pyroluric, as in your case, but may also have other nutrient deficiencies as well, as is the case with me. I wouldn't be without my supplements for even a day because they do make a difference. I've tailored a vitamin supplement regimen with dosages tailored to myself, and it works well. I believe my condition is much improved due to the supplements, even though my diet is not based on whole foods. But thank you for bringing that up. I am going to look at my diet and perhaps adjust it with more whole foods. How long have you been using a whole foods diet? How long did it take on the diet before you started showing real improvement? As far as I know, there is no set diet for schizophrenia, unless you have food allergies. Then you can adjust it. I was also thinking of probiotics, but it isn't an exact science and no guarantees either. Thank you for your post.
Posted by Jahxman on July 2, 2010, at 12:10:05
In reply to Re: pyroluria supps...my experience...it's WORKING, posted by Lao Tzu on July 2, 2010, at 9:39:01
Ty for posting.
I found that I cannot eat foods containing refined sugar or gluten; when I avoid these two substances in my diet and get at least half of the food volume I am eating from fresh vegetables (both raw and cooked) is when I feel the best in terms of energy and mood.
My brother did feel that the supplements helped him; I just noticed more of an improvement for myself when I eat this way.
Posted by Lao Tzu on July 2, 2010, at 16:12:45
In reply to Re: pyroluria supps...my experience...it's WORKING, posted by Jahxman on July 2, 2010, at 12:10:05
Vegetables are the one thing I don't eat enough of. Maybe it would help. Do you eat fresh fruit sparingly because the sugar in fruit is not refined, but depending on whether you are a fast oxidizer or slow oxidizer, fruit might have to be limited in some cases. Do you eat enough protein? I find that instead of craving carbs like many depressives, I have a real craving for meat, salt, and other types of protein-rich foods like eggs and tuna. Someone told me that just eating protein-rich foods will not give you all the energy you need. Instead, a better diet is full of complex carbohydrates, and four to five small meals should be eaten during the course of the day.
Posted by Maggie1998 on July 3, 2010, at 23:50:34
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by jahxman on June 30, 2010, at 14:42:42
Supplementing Zinc and P5P (a form of B6) for both of my kids is still working very well. In fact, recently we had to take my son off of all supplements to re-test and ALL of his symptoms returned...we couldn't wait to put him back on and even he was begging to be put back on. Thankfully, he is stable again after returning to supplements. Of note, both kids are also on a gluten free, casein (dairy) free diet and were on this at least a year before we found the Pyroluria. The initial gains on the diet were nice but we didn't see big gains until we supplemented with therapeutic doses of zinc and P5P. We did, however, need both the diet and supplements to get the kids stable and functioning relatively normal.
It is very important to continue monitoring zinc levels - keeping in mind that its hard to "test" for optimal levels since zinc is stored in tissues rather than simply found in serum. We do this by testing a Zinc/Copper ratio rather than just one or the other. If the ratio is good (zinc higher than copper), then this may indicate levels are good...but it isn't an exact science.
Posted by Lao Tzu on July 4, 2010, at 9:46:29
In reply to Re: pyroluria supps...my experience...it's WORKING !!!, posted by Maggie1998 on July 3, 2010, at 23:50:34
Hello. Thanks for relating your experience. I have also benefitted from using zinc picolinate and B6/P5P at the proper dosages for me. How do you test the zinc/copper ratio? Do you do that at home or by a doctor? I might be interested to get it tested myself. Supplementing with a little manganese may also help to lower copper levels, but it is tricky. I've read some people, like those with schizophrenia, need both manganese and zinc for copper overload, but like you said, it is not an exact science. I only take 10mg of manganese everyday in addition to the zinc picolinate and B6. I find even this small dosage of manganese helps my depression, perhaps by antagonizing copper. But I've read that certain people with schizophrenia may need 30mg or more of manganese per day. I tried this, and I just can't tolerate more than 10mg per day. You have to listen to your body when it says enough is enough. Do you also supplement your kids with Evening Primrose Oil for the Omega-6 fatty acids. It is recommended by some sources for those with pyroluria because in some people, there may be a deficiency of arachodonic acid in addition to a double deficiency of zinc and B6.
Posted by TheTaoOfPhil on July 5, 2010, at 12:40:54
In reply to Re: pyroluria supps...my experience...it's WORKING, posted by Lao Tzu on July 4, 2010, at 9:46:29
Hi,
I learned about Pyroluria from the book Depression Free Naturally by Joan Mathews Larson. Based on my family history (alcoholism left and right, bi-polar II, OCD,etc.) and the description of the anxiety syndrome in this book, however, I highly suspect that I have Pyroluria. Unfortunately the Bio Center laboratory in KS cannot do tests for people who live in NY state because of the AMA's hegemonic, nanny-state control of medical care here. My solution has been to try the supplements and just see if I get better.
The problem is that the regime suggested by Larson is quite extensive, and although none of these supplements is individually expensive, the whole thing adds up. She suggests the folowing:
B6 (Pyridoxine) 250 mg or more 2x daily
Zinc Picolinate 25 mg 2x daily
Pyroxial 5 phosphate 50 mg 2x daily
Manganeses gluconate 20 mg daily
Niacinamide 500 mg 2x daily
Pantothenic acid 500 mg 2x dailyShe also suggests magnesium and Vitamin C, but I have already been taking these for years so they're a no brainer.
I've been taking this regime for over a month. I cannot report a dramatic improvement, but I think it might be helping my concentration and energy level a bit. So I want to continue. But I also want to reduce the number of things I'm taking because it's a lot of money.
I tried the manganese at 10 mg daily for several weeks and then stopped because it did not seem to make a difference, and this is the one thing here that can have adverse effects. I think I noticed a little bit of twitching in my face while taking it but of course with my anxiety it's very easy for me to believe that the side effects I read about are happening to me :-(
Niacinamide is used in some circles at high doses as a benzo diazepine substitute, but I also read that it increases histamine levels. Does this mean that it can actually make your allergies worse? I already have really bad allergies.
As I understand it, the core deficiency in Pyroluria is B6 and Zinc, so in theory the only thing here that is absolutely necessary should be the B6 Pyriodixine and Zinc Picolinate. Is this the case, or should I keep any of the other things on that list?
Many thanks for your help. Thank God there's someplace where people are discussing these things.
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