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Dr. Bob is Robert Hsiung, MD,
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Posted by nolagirl on August 31, 2007, at 22:51:01
In reply to Re: re pryoluria » KayeBaby, posted by nolagirl on August 31, 2007, at 18:20:21
i was in the midst of having my hormone levels tested when i found out about the pyroluria. i put the tests on hold when i began getting such a good response to the supps. isn't it just like mother nature to come spoil the fun! oh well, looks like i may have to throw some progestrone into the mix.
nolagirl
Posted by KayeBaby on September 2, 2007, at 2:37:53
In reply to Re: re pryoluria » nolagirl, posted by nolagirl on August 31, 2007, at 22:51:01
Have you tried the pregesterone before?
It made me sluggish. Yuck!
Does your cycle run short long or right on time?
What symptoms bother you the most?I do think the high B6 eases the emotional component some.
Night,
Kaye
Posted by nolagirl on September 2, 2007, at 8:06:52
In reply to Re: re pryoluria » nolagirl, posted by KayeBaby on September 2, 2007, at 2:37:53
Hi Kaye,
I tried the progestrone cream about 10 yrs. ago and had the same response as you. I read somewhere that it is a normal side-effect that would pass once you used it for a full cycle. At the time, I didn't have the option of sleeping for a month so I nixed it. My cycles are short in duration and come right on time. I am 47 and am sure I am peri-menepousal.
Upon reflection, I do see that the B6 is helping with my emotional state as well. It is just that, before the PMS started, my results were remarkable and this week they are just good. Funny that I should feel so let down because, a month ago, I was on my couch 24/7 contemplating suicide. It had gotten to the point that I only had about 5 functional days a month. These were the 2 - 7 days after my period started.
The past few days I have had my foggy thinking and lack of motivation return. Bummer! I had run out of the p-5-p and was just taking the standard B6. I got some more yesterday so we'll se if that might make a difference. For the past 20yrs., I have been a guinea pig for psych meds. Might as well give the supps the same shot.
I hope that you are feeling better since you upped the B6 dose. I am up to 400mgs now and my dreams are awesome! Let's keep eachother in the loop. Hope that you have a happy weekend!!
Hugs,
Nolagirl
Posted by maggie1998 on September 2, 2007, at 19:47:21
In reply to Re: re pryoluria » KayeBaby, posted by nolagirl on September 2, 2007, at 8:06:52
I increase my kids supps for pyroluria during times of stress (only P5P actually - I keep the zinc the same)..and it helps a lot. I've heard that during times of stress people with pyroluria need more of the same. Have you tried increasing your zinc/b6 during times of PMS...is it possible that your body needs more during that time? Also, have you tried adding Omega 6's or GLA? Another thing to try for stabilizing hormones is Vitex. You might need to take it for a couple months before seeing results but I've heard good things about it. Just a few things to consider. Best of luck to both of you!
M
Posted by nolagirl on September 2, 2007, at 19:57:31
In reply to Re: re pryoluria, posted by maggie1998 on September 2, 2007, at 19:47:21
Thanks Maggie. That is a good point about the PMS and stress. I just bumped my p-5-p up and will give it a whirl. I have heard of vitex and may give that a try too. It is great that you have been able to diagnose and treat the pyroluria in your kids. I look back and can see I've had the symptoms most of my life. It's probably why, although I am intelligent, I was somewhat of an under achiever.I know that they will have a much easier road that they are better.
Nolagirl
Posted by KayeBaby on September 6, 2007, at 23:57:34
In reply to Re: re pryoluria » KayeBaby, posted by nolagirl on September 2, 2007, at 8:06:52
Hi Nolagirl,
I have been taking about 200 mg of P-5-P for several days now along with, of course, a B-100 supplement. I certainly seems to agree with me.It is subtle, but I swear I feel more energetic after each dose for a while.
I am still taking 50 mg of zinc and may try a little more after I figure out where I want to be with the B6. I did add manganese and am taking a teaspoon of cod liver oil every day as well. Yuccky!
My PMS was not nearly so bad as it usually is but I have also recently changed some meds so it's hard to say yet what is responsible.
I am very well, I am happy to report so I will continue to do what I am doing. It has been a mostly dissappointing summer but my memory is short. I am fine now and the difficulties recently continue to fade in my mind.
I will keep you updated, my pryro pal.
Peace,
Kaye
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?
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