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Dr. Bob is Robert Hsiung, MD,
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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.
Posted by KayeBaby on August 31, 2007, at 16:03:18
In reply to Re: re pryoluria, posted by Ed O`Flaherty on August 27, 2007, at 13:44:22
I have upped my B6 (p-5-p)to around 200mg and I am dreaming again. The first night my dreams were more like nightmares. Reminded me of REM rebound. They have grown more pleasant every night.
I have not noticed any other effects good or bad-but this is PMS week for me so I will wait and see.
Kaye
Posted by nolagirl on August 31, 2007, at 18:20:21
In reply to Re: re pryoluria, posted by KayeBaby on August 31, 2007, at 16:03:18
Hi Kaye,
I am in PMS mode too and the supps for the pyroluria aren't helping that much. After 3 weeks of feeling great I started to crash. It dawned on me that it is that time again and I hope I'll go right back to feeling good when it's past. I hope the same for you!
Nolagirl
Posted by KayeBaby on August 31, 2007, at 22:02:11
In reply to Re: re pryoluria » KayeBaby, posted by nolagirl on August 31, 2007, at 18:20:21
I swear. Every month I forget and think-uh oh. I feel bad again, it's happening again. I'm never going to be well. Ahhhhhh despair.
I completely forget that this happens every month. I have my family remind me.
Kaye
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.
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