Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 This is really interesting... Thanks for posting! I almost wish this group could conduct our own experiment... such as take 10 volunteers, and 5 take B6 and 5 don't. of course, we'd have to probably have to make this a 'blind' study to account for placebo effects.. well, maybe not. hmm. To: Soundsensitivity Sent: Thursday, December 4, 2008 9:47:48 AMSubject: Pyroluria A friend suggested I look into the condition pyroluria (sometimes spelled pyrroluria), because sound sensitivity is one symptom. Here are some others from www.drkaslow. com/html/ pyroluria. html:"The effect of pyroluria can have a mild, moderate, or severe depending on the severity of the imbalance. Most individuals show symptoms of zinc and/or B6 deficiencies, which include poor stress control, nervousness, anxiety, mood swings, severe inner tension, episodic anger (an explosive temper), poor short-term memory and depression. Most pyrolurics exhibit at least two of these problems. These individuals cannot efficiently create serotonin (a neurotransmitter that reduces anxiety and depression) since vitamin B6 is an important factor in the last step of its synthesis. Many of these persons appear to benefit from SSRI medications such as Prozac, Paxil, Zoloft, Celexa, etc. However, as with all mind-altering drugs, side effects occur and the true cause of the mental difficulties remains uncorrected. In addition these individuals often have frequent infections and are often identified by their inability to tan, poor dream recall, abnormal fat distribution, and sensitivity to light and sound. As you can imagine an SSRI will not correct these metabolic effects. More healthful benefits may be achieved by giving the appropriate supporting nutrients."The "supporting nutrients" are vitamin b-6 in the P5P form, and zinc. I haven't had the test for pyroluria, but I've been increasing my b-6 and zinc over the past 2-3 months. I can't say that my 4s is gone, but my reactions are definitely calmed. I have bad times, especially PMS-related, but overall my tolerance of sound is much improved. I wish I could test this entire group for pyroluria--I' d be very interested to see the results.I definitely have an inability to tan, poor dream recall, and sensitivty to sound, as well as a tendency to anxiety and depression. After a few weeks on b-6, I started remembering my dreams, which has been really interesting. The condition is linked to schizophrenia, which runs in my family. There are studies showing that 70% of schizophrenics have pyroluria.This would explain why some of us have been helped by SSRI's like Prozac, but not cured of our sound sensitivity. The underlying problem is still there.It's important to get the P5P form of b-6, which is more expensive but easily absorbed. I've been taking regular zinc, which is fine as far as I know.If any of you are inclined to try nutritional therapy, please give this a try and tell us your reults. Better yet, get tested for pyroluria. The test is about $40-50, and can be set up through a naturopath or open-minded physician. A naturopath who knows something about pyroluria would be best, because some people need other nutrients to correct the condition, and they can help you figure out how much you need. I can't afford a naturopath, so I've been experimenting on my own. Here's another site to check out: http://www.kryptopy rrole.com/Give it a try--it's really helped me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 , thanks so much for sending this. I was reading through the site and noticed that I have many of the symptoms that are mentioned...I secretly hope that we all have it since I read that:Early testing for pyroluria and elevated kryptopyrrole levels can not only lead to proper diagnosis and treatment, but in the past has on occasion resulted in near-miraculous recovery.Wouldn't it be great if we could all have a "near-miraculous recovery" by just supplementing with vitamins/minerals and some omega's? How great would that be?I read the story about the recovery of the 11 year old girl and that's just amazing and wonderful. I encourage everyone to go and have a look at the link sent and see if they notice any similarities in the symptoms.Thanks so much for sending this info!andraTo: Soundsensitivity Sent: Friday, December 5, 2008 1:47:48 AMSubject: PyroluriaA friend suggested I look into the condition pyroluria (sometimes spelled pyrroluria), because sound sensitivity is one symptom. Here are some others from www.drkaslow.com/html/pyroluria.html:"The effect of pyroluria can have a mild, moderate, or severe depending on the severity of the imbalance. Most individuals show symptoms of zinc and/or B6 deficiencies, which include poor stress control, nervousness, anxiety, mood swings, severe inner tension, episodic anger (an explosive temper), poor short-term memory and depression. Most pyrolurics exhibit at least two of these problems. These individuals cannot efficiently create serotonin (a neurotransmitter that reduces anxiety and depression) since vitamin B6 is an important factor in the last step of its synthesis. Many of these persons appear to benefit from SSRI medications such as Prozac, Paxil, Zoloft, Celexa, etc. However, as with all mind-altering drugs, side effects occur and the true cause of the mental difficulties remains uncorrected. In addition these individuals often have frequent infections and are often identified by their inability to tan, poor dream recall, abnormal fat distribution, and sensitivity to light and sound. As you can imagine an SSRI will not correct these metabolic effects. More healthful benefits may be achieved by giving the appropriate supporting nutrients."The "supporting nutrients" are vitamin b-6 in the P5P form, and zinc. I haven't had the test for pyroluria, but I've been increasing my b-6 and zinc over the past 2-3 months. I can't say that my 4s is gone, but my reactions are definitely calmed. I have bad times, especially PMS-related, but overall my tolerance of sound is much improved. I wish I could test this entire group for pyroluria--I'd be very interested to see the results.I definitely have an inability to tan, poor dream recall, and sensitivty to sound, as well as a tendency to anxiety and depression. After a few weeks on b-6, I started remembering my dreams, which has been really interesting. The condition is linked to schizophrenia, which runs in my family. There are studies showing that 70% of schizophrenics have pyroluria.This would explain why some of us have been helped by SSRI's like Prozac, but not cured of our sound sensitivity. The underlying problem is still there.It's important to get the P5P form of b-6, which is more expensive but easily absorbed. I've been taking regular zinc, which is fine as far as I know.If any of you are inclined to try nutritional therapy, please give this a try and tell us your reults. Better yet, get tested for pyroluria. The test is about $40-50, and can be set up through a naturopath or open-minded physician. A naturopath who knows something about pyroluria would be best, because some people need other nutrients to correct the condition, and they can help you figure out how much you need. I can't afford a naturopath, so I've been experimenting on my own. Here's another site to check out: http://www.kryptopyrrole.com/Give it a try--it's really helped me.------------------------------------PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE.Thank you. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Yeah, thanks for the info. I'll have to try to add some zinc and vitamin B to my diet. > > , thanks so much for sending this. I was reading through the site and noticed that I have many of the symptoms that are mentioned...I secretly hope that we all have it since I read that: > > Early testing for pyroluria and elevated kryptopyrrole levels can not only lead to proper diagnosis and treatment, but in the past has on occasion resulted in near-miraculous recovery. > > Wouldn't it be great if we could all have a " near-miraculous recovery " by just supplementing with vitamins/minerals and some omega's? How great would that be? > > I read the story about the recovery of the 11 year old girl and that's just amazing and wonderful. I encourage everyone to go and have a look at the link sent and see if they notice any similarities in the symptoms. > > Thanks so much for sending this info! > > andra > > > > > ________________________________ > > To: Soundsensitivity > Sent: Friday, December 5, 2008 1:47:48 AM > Subject: Pyroluria > > A friend suggested I look into the condition pyroluria (sometimes > spelled pyrroluria), because sound sensitivity is one symptom. Here > are some others from www.drkaslow.com/html/pyroluria.html: > > " The effect of pyroluria can have a mild, moderate, or severe > depending on the severity of the imbalance. Most individuals show > symptoms of zinc and/or B6 deficiencies, which include poor stress > control, nervousness, anxiety, mood swings, severe inner tension, > episodic anger (an explosive temper), poor short-term memory and > depression. Most pyrolurics exhibit at least two of these problems. > These individuals cannot efficiently create serotonin (a > neurotransmitter that reduces anxiety and depression) since vitamin > B6 is an important factor in the last step of its synthesis. Many of > these persons appear to benefit from SSRI medications such as Prozac, > Paxil, Zoloft, Celexa, etc. However, as with all mind-altering drugs, > side effects occur and the true cause of the mental difficulties > remains uncorrected. In addition these individuals often have > frequent infections and are often identified by their inability to > tan, poor dream recall, abnormal fat distribution, and sensitivity to > light and sound. As you can imagine an SSRI will not correct these > metabolic effects. More healthful benefits may be achieved by giving > the appropriate supporting nutrients. " > > The " supporting nutrients " are vitamin b-6 in the P5P form, and > zinc. I haven't had the test for pyroluria, but I've been increasing > my b-6 and zinc over the past 2-3 months. I can't say that my 4s is > gone, but my reactions are definitely calmed. I have bad times, > especially PMS-related, but overall my tolerance of sound is much > improved. I wish I could test this entire group for pyroluria--I'd > be very interested to see the results. > > I definitely have an inability to tan, poor dream recall, and > sensitivty to sound, as well as a tendency to anxiety and > depression. After a few weeks on b-6, I started remembering my > dreams, which has been really interesting. The condition is linked > to schizophrenia, which runs in my family. There are studies showing > that 70% of schizophrenics have pyroluria. > > This would explain why some of us have been helped by SSRI's like > Prozac, but not cured of our sound sensitivity. The underlying > problem is still there. > > It's important to get the P5P form of b-6, which is more expensive > but easily absorbed. I've been taking regular zinc, which is fine as > far as I know. > > If any of you are inclined to try nutritional therapy, please give > this a try and tell us your reults. Better yet, get tested for > pyroluria. The test is about $40-50, and can be set up through a > naturopath or open-minded physician. A naturopath who knows > something about pyroluria would be best, because some people need > other nutrients to correct the condition, and they can help you > figure out how much you need. I can't afford a naturopath, so I've > been experimenting on my own. Here's another site to check out: > http://www.kryptopyrrole.com/ > > Give it a try--it's really helped me. > > > > > ------------------------------------ > > PLEASE BE AWARE THIS IS A STRICTLY CONFIDENTIAL GROUP AND NO MESSAGES ARE TO BE USED FOR ANY PURPOSE OUTSIDE OF THE YAHOO GROUP MEMBERSHIP SITE OR REPRODUCED OR COPIED AND MAILED FOR ANY PURPOSE. > > ALSO DO NOT SHARE MEMBER EMAIL ADDRESSES OR NAMES WITH ANYONE. > Thank you. MJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2008 Report Share Posted December 4, 2008 Interesting ... thanks! Of all these symptoms... poor stress > control, nervousness, anxiety, mood swings, severe inner tension, > episodic anger (an explosive temper), poor short-term memory and > depression... I'd say I have 5 of them! LOL. I have been speaking to my new doctor about 4S and he's currently looking into it for me which is more than any other doctor I've had. We started discussing vitamins etc... my last visit so I will mention this to him as well. I have tried Paxil and it takes all those other symptoms away but the sound issue remains. Annoying. > > A friend suggested I look into the condition pyroluria (sometimes > spelled pyrroluria), because sound sensitivity is one symptom. Here > are some others from www.drkaslow.com/html/pyroluria.html: > > " The effect of pyroluria can have a mild, moderate, or severe > depending on the severity of the imbalance. Most individuals show > symptoms of zinc and/or B6 deficiencies, which include poor stress > control, nervousness, anxiety, mood swings, severe inner tension, > episodic anger (an explosive temper), poor short-term memory and > depression. Most pyrolurics exhibit at least two of these problems. > These individuals cannot efficiently create serotonin (a > neurotransmitter that reduces anxiety and depression) since vitamin > B6 is an important factor in the last step of its synthesis. Many of > these persons appear to benefit from SSRI medications such as Prozac, > Paxil, Zoloft, Celexa, etc. However, as with all mind-altering drugs, > side effects occur and the true cause of the mental difficulties > remains uncorrected. In addition these individuals often have > frequent infections and are often identified by their inability to > tan, poor dream recall, abnormal fat distribution, and sensitivity to > light and sound. As you can imagine an SSRI will not correct these > metabolic effects. More healthful benefits may be achieved by giving > the appropriate supporting nutrients. " > > The " supporting nutrients " are vitamin b-6 in the P5P form, and > zinc. I haven't had the test for pyroluria, but I've been increasing > my b-6 and zinc over the past 2-3 months. I can't say that my 4s is > gone, but my reactions are definitely calmed. I have bad times, > especially PMS-related, but overall my tolerance of sound is much > improved. I wish I could test this entire group for pyroluria--I'd > be very interested to see the results. > > I definitely have an inability to tan, poor dream recall, and > sensitivty to sound, as well as a tendency to anxiety and > depression. After a few weeks on b-6, I started remembering my > dreams, which has been really interesting. The condition is linked > to schizophrenia, which runs in my family. There are studies showing > that 70% of schizophrenics have pyroluria. > > This would explain why some of us have been helped by SSRI's like > Prozac, but not cured of our sound sensitivity. The underlying > problem is still there. > > It's important to get the P5P form of b-6, which is more expensive > but easily absorbed. I've been taking regular zinc, which is fine as > far as I know. > > If any of you are inclined to try nutritional therapy, please give > this a try and tell us your reults. Better yet, get tested for > pyroluria. The test is about $40-50, and can be set up through a > naturopath or open-minded physician. A naturopath who knows > something about pyroluria would be best, because some people need > other nutrients to correct the condition, and they can help you > figure out how much you need. I can't afford a naturopath, so I've > been experimenting on my own. Here's another site to check out: > http://www.kryptopyrrole.com/ > > Give it a try--it's really helped me. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 I have to add that I mentioned pyroluria to my doctor (not a naturopath), and she had no idea what I was talking about. It's well-documented, well-studied, etc, but it's ignored by western medicine. I'm getting very cynical, but it seems like anything that has a simple vitamin or natural cure is ignored by medicine because the pharmaceutical companies can't make any money off of it. I really hope this helps some other people--it would be fantastic to see some near-miraculous recoveries! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 Hi ,Since you mentioned it I have been reading a lot about pyroluria and I find it to be so interesting. The effects of the vitamin and mineral deficiencies for this condition can be astounding. I find that I have many of these same symptoms and would be so relieved if this is what we all suffer from. Easily fixed with vitamin/mineral supplementation and the healing effects can be noticed in just 72 hours?! That's wonderful...I'm starting on the vitamin supplementation on Monday and I'll let you know how it goes. I read somewhere that usually the does of B6 is between 250mg-1500mg. The dose begins at a lower amount and raised by 250mg every 4 days until "dream recall" has returned. Obviously this should really be monitored and administered by your doctor or naturopath.I have lost a lot of faith in western medicine. I believe it has become more about making money than healing people. For emergency care and surgical procedures I think western medicine has advanced like no other. On the other hand, disease, preventative care, chronic conditions and psychological/neurological disorders such as ours I think it still has a LONG way to go. , can you let me know the amount of B6 and Zinc that you are taking?I agree, it would be great to see people reporting back on it's benefits!!!Thanks again for mentioning it )andraTo: Soundsensitivity Sent: Saturday, December 6, 2008 2:09:05 AMSubject: Re: Pyroluria I have to add that I mentioned pyroluria to my doctor (not a naturopath), and she had no idea what I was talking about. It's well-documented, well-studied, etc, but it's ignored by western medicine. I'm getting very cynical, but it seems like anything that has a simple vitamin or natural cure is ignored by medicine because the pharmaceutical companies can't make any money off of it. I really hope this helps some other people--it would be fantastic to see some near-miraculous recoveries! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 andra, I'm at a pretty low dose, really, and I've noticed improvement. I take 100mg of p5p b-6, and 60 mg of zinc. It's not much. I don't take a multi-vitamin, since some of the other vitamins and minerals can counteract or interfere with the b-6 (I can't remember where I read this, actually. I need to look into that further.) A friend of mine always says that if she breaks a bone, she'll go to the emergency room. Otherise western medicine can't help her. I think that's pretty much true. I've had terrible luck with doctors dealing with some gastrointestinal problems I've been experiencing for the past few years. They'll test you, medicate you, and send you on your way with an enormous bill to pay. If that medicine doesn't work, try another, more expensive one. Side effects? Who cares! Getting to the root of the problem? Who cares! Just treat those symptoms and keep taking the pills. I think even the better doctors have this attitude--it's ingrained in them in medical school. I like my kids' doctor a lot, and I think she tries to do the right thing, but it's still all about symptom management and pills. Let me know if you feel any better. I hope so! Quote Link to comment Share on other sites More sharing options...
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