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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by tel1kdj on October 12, 2009, at 15:18:16
I have pyroluria (urine test score=40). Prior to this diagnosis, I had been taking 300-400mg B6 (pyridoxine HCL) per day for many, many years - not knowing the condition that I had - but I knew that I always needed mega amounts of B6. I always felt much better when taking huge amounts of B6 - by itself or, sometimes, as a B-complex. During this time, I never took a zinc supplement! Now I know my condition and have recently added 50 mg of zinc each day. I really needed the zinc for all these years and didn't know it! With the recent new regimen (zinc/B6), I feel much, much better. I am coming out of a year long depression and my hair stopped falling out, as well as many other changes such as better sleep.
My questions are: When I take B6, do I take the 400 mg/day ALL in B-complex pills or can I take B6 BY ITSELF (without the other B-complex vitamins)? If I take B6 on its own, do I also need B2 to make B6 effective? Also, I have found that P-5-P helps (I am now taking 100mg/day), but I still need to add a lot of regular B6 (pyridoxine HCL) to get the best B6 results? Also, how much Zinc should I take for pyroluria w/o it being toxic?
Posted by bleauberry on October 12, 2009, at 19:37:42
In reply to Pyroluria - Zinc and B6, posted by tel1kdj on October 12, 2009, at 15:18:16
> I have pyroluria (urine test score=40). Prior to this diagnosis, I had been taking 300-400mg B6 (pyridoxine HCL) per day for many, many years - not knowing the condition that I had - but I knew that I always needed mega amounts of B6. I always felt much better when taking huge amounts of B6 - by itself or, sometimes, as a B-complex. During this time, I never took a zinc supplement! Now I know my condition and have recently added 50 mg of zinc each day. I really needed the zinc for all these years and didn't know it! With the recent new regimen (zinc/B6), I feel much, much better. I am coming out of a year long depression and my hair stopped falling out, as well as many other changes such as better sleep.
>
> My questions are: When I take B6, do I take the 400 mg/day ALL in B-complex pills or can I take B6 BY ITSELF (without the other B-complex vitamins)? If I take B6 on its own, do I also need B2 to make B6 effective? Also, I have found that P-5-P helps (I am now taking 100mg/day), but I still need to add a lot of regular B6 (pyridoxine HCL) to get the best B6 results? Also, how much Zinc should I take for pyroluria w/o it being toxic?
>Excellent questions. I don't have the answers. But I did want to cheer for you in your discovery. Very exciting.
Did you ever have the tiny random white spots on fingernails? That is an outward clue of pyroluria.
I think with everyone it is different. Some do better with B6, some better with P5P, some better with a mixture of both. Complicated chemistry in the body we just don't know enough about. I am fairly sure the 50 dose of zinc is nontoxic, but not absolutely sure. It will encourage copper excretion in the longrun. High dose zinc is a method of reducing excess copper levels. My gut instinct says lower copper will not be a problem. High copper is more often a culprit in psych disorders.
I think the bottom line is you have to go with whatever feels best, like what you have been doing. Things may change or shift over time, so you may need to shift doses a little here and there as time goes on. Things don't stand still. I don't suspect you would have to change much.
As for zinc toxicity, you could probably do some google searching to find out what symptoms of toxic zinc levels are so you would know what to recognize if it ever happened. You may be able to find out if there are certain testable blood levels that are toxic and maybe be tested once in a while? I wouldn't worry about it right now, but maybe 6 months or a year from now it might be good to know what signs or symptoms would give a clue to having too much zinc. The worldwide web has made that kind of knowledge attainable at the click of a mouse.
Great news!
Posted by Deneb on October 12, 2009, at 21:15:34
In reply to Pyroluria - Zinc and B6, posted by tel1kdj on October 12, 2009, at 15:18:16
Hello tel1kdj!
I don't know what pyroluria is, but hopefully someone here will be able to help you. I just wanted to welcome you to Psycho-Babble.
I'm glad you're feeling much better!
Deneb
Posted by nolvas on October 13, 2009, at 3:14:44
In reply to Re: Pyroluria - Zinc and B6 » tel1kdj, posted by Deneb on October 12, 2009, at 21:15:34
Be careful with high doses of Vitamin B6, follow the advice below, also note that P5P has not been associated with toxicity in large doses as B6 has, so for safety's sake I'd prefer P5P over B6 in large doses and as you probably know it's the active form of B6 anyway, so the body doesn't need to convert B6 to the active form via the liver, and you certainly don't want to burden the liver, it has enough to do with detoxifying the body anyway as well as it's other numerous biological activities >
"Vitamin B6 is usually safe, at intakes up to 200 mg per day in adults. However, vitamin B6 can cause neurological disorders, such as loss of sensation in legs and imbalance, when taken in high doses (200 mg or more per day) over a long period of time. Vitamin B6 toxicity can damage sensory nerves, leading to numbness in the hands and feet as well as difficulty walking. Symptoms of a pyridoxine overdose may include poor coordination, staggering, numbness, decreased sensation to touch, temperature, and vibration,; and tiredness for up to six months."
This is also very informative regarding B6 >http://www.thorne.com/altmedrev/.fulltext/6/1/87.pdf
Please look at the section Safety, Toxicity and Side Effects.
Posted by tel1kdj on October 13, 2009, at 8:54:37
In reply to Re: Pyroluria - Zinc and B6, posted by bleauberry on October 12, 2009, at 19:37:42
I appreciate all of the input. It's ashame that I went all these years not knowing the condition that I had, and yet discovering & self-administering huge amounts of B6 because it made me feel so much better. Unfortunately, I didn't know about the 'Zinc' portion of this puzzle - which is now becoming the icing on the cake as far as my treatment for Pyroluria. I wish that the doctors that I've gone to over the years would have diagnosed this condition earlier and saved my a lot of grief and pain.
I agree that P5P is easier on a person - I don't feel as 'wired' all of the time. I am more relaxed on P5P, however I still need a lot of B6 pyridoxine in addition to P5P. (Maybe I should just continue to increase my P5P to 250-300mg/day while lowering my pyridoxine to see what happens?)
As far as the Zinc supplements, I think you are probably right in that I could have an over-abundance of copper due to the zinc deficieny over the years. I'll take your advice and continue with 50mg zinc for some time and watch for overdose symptons.
Thank you very much for the information and advice!
Posted by nolvas on October 13, 2009, at 11:58:04
In reply to Re: Pyroluria - Zinc and B6, posted by tel1kdj on October 13, 2009, at 8:54:37
There's no way that a Doctor of conventional medicine would or could ever diagnose you as having Pyroluria, they simply don't believe it exists. There are no studies to indicate it exists, the only studies I know of are these two >
1: Am J Psychiatry. 1978 Oct;135(10):1239-40.Click here to read Links
Pyroluria: a poor marker in chronic schizophrenia.
Cruz R, Vogel WH.2: Med Hypotheses. 1986 Apr;19(4):333-8.Click here to read Links
A new prostaglandin disturbance syndrome in schizophrenia: delta-6-pyroluria.http://en.wikipedia.org/wiki/Pyroluria#Pyroluria
I have to say that all the evidence points to this condition as being fictitious, however Carl Pfeiffer is well regarded in alternative medicine.
So basically what I'm saying is the medical establishment do not recognise this condition, so you will never get any help from them regarding it.
Posted by Matsuemon on March 14, 2010, at 16:22:02
In reply to Re: Pyroluria - Zinc and B6, posted by nolvas on October 13, 2009, at 11:58:04
Hello all. To the previous poster who said there is hardly any scientific proof that this condition exists, that couldn't be more untrue. Thousands upon thousands of people have been found to have this condition, and treated successfully. A psychiatrist friend of mine who used to work at John Hopkins even knew about it fifteen or so years ago.
As for the question about how much zinc to take. I just finished reading a book by Dr. Pfeiffer, and he addresses that. However, he seems to contradict himself. He says to take "30 mg of elemental zinc, which is equivalent to about 300 mg zinc gluconate." But then later in the book he says specefically to take "30 mg zinc gluconate twice daily." So I'm completely confused based on his comments, but that's what he says haha. Sorry I couldn't help more
>
Posted by Deneb on March 20, 2010, at 15:26:01
In reply to Re: Pyroluria - Zinc and B6, posted by Matsuemon on March 14, 2010, at 16:22:02
Hi Matsuemon!
Welcome to Psycho-Babble! Is Dr. Pfeiffer the only expert who knows about the zinc? I hope you find some answers!
Deneb
This is the end of the thread.
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