![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 28. This is the beginning of the thread.
Posted by Simus on June 21, 2004, at 0:20:39
After a lifetime of illness, both physical and mental, I did some on-line investigation and matched my ongoing symptoms to pyroluria. A positive test confirmed my suspicion.
First of all, can someone tell me why the medical community generally seems to not be familiar with this condition?Second, I am having only moderate success treating it with supplements. The meds I am on are 150mg Wellbutrin and 1mg Xanax (after eight years of SSRIs). I supplement with a multivitamin, B6, zinc, magnesium/calcium, C, and quercetin daily. And I take B3, B5, B12, Evening Primrose oil, and a few other supplements, but not quite on a daily basis. I drink ginseng/ginger/green teas daily which does help.
I would be appreciative for any response. Thanks in advance.
Posted by chemist on June 21, 2004, at 8:16:57
In reply to Pyroluria: Larry H., chemist, anyone...any help?, posted by Simus on June 21, 2004, at 0:20:39
> After a lifetime of illness, both physical and mental, I did some on-line investigation and matched my ongoing symptoms to pyroluria. A positive test confirmed my suspicion.
>
> First of all, can someone tell me why the medical community generally seems to not be familiar with this condition?
>
> Second, I am having only moderate success treating it with supplements. The meds I am on are 150mg Wellbutrin and 1mg Xanax (after eight years of SSRIs). I supplement with a multivitamin, B6, zinc, magnesium/calcium, C, and quercetin daily. And I take B3, B5, B12, Evening Primrose oil, and a few other supplements, but not quite on a daily basis. I drink ginseng/ginger/green teas daily which does help.
>
> I would be appreciative for any response. Thanks in advance.hello there, chemist here.....this one threw me for a loop! i couldn't even find the word ``pyroluria'' in my merck manual, my taber's, even voet and voet on the off-chance, and even checked my webster's. doesn't even make an appearance in goodwin and jamison, although that is the definitive text for manic depression....so i hit pubmed - what else to do - and got 2 hits: number one is entitled ``Pyroluria: a poor marker in chronic schizophrenia,'' Am. J. Psychiatry 135:1239-1240 (1976), no abstact, and i'm not heading down to the library for this one. the second hit is more informative, ``A new prostaglandin disturbance syndrome in schizophrenia,'' Med Hypotheses 19:333-338 (1986) where the hypotheses that some schizophrenics are deficient in an enzyme called delta^{6} desaturase. as the name implies, desaturases take saturated fatty acids and desaturate (i.e., induce the formation of a double bond where there was formerly a single bond) the fatty acids. the designation omega-6 and omega-3 refers to the position of the double bond. so, if you are lacking in the delta^{6} desaturase, you have elevated levels of omega-3 c.f omega-6, which in turn leads (to among other things) to an important precursor for arachadonic acid, which in turn goes to things that help relieve pain, etc. (the stuff in question is cis-linoleic acid). now, pyroluria is the opposite, but the one abstract i am reading indicates that elevated cic-linoleic levels are not due to mutant delta^{6} desaturase, but to something else. so, fasting insulin levels get higher, and some compound they refer to as a urinary kryptopyrolle shows up. the part that interests me is that this condition has either been renamed or dismissed as being something that can be addressed with proper omega-3/omega-6 supplementation or ruling out diabetes (i'm uessing mellitus). heck, it's not even in the DSM-IV TR. maybe i'm looking in the wrong places, but it sounds like this could have been a medical hypothesis that didn't make the grade....in any event, i wish you well, and hope this helps (i sure learned a lot!)....all the best, chemist
Posted by Simus on June 21, 2004, at 10:52:29
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Simus, posted by chemist on June 21, 2004, at 8:16:57
Sorry to put you to so much work, Chemist, but thanks.
>deficient in an enzyme called delta^{6} desaturase. as the name implies, desaturases take saturated fatty acids and desaturate (i.e., induce the formation of a double bond where there was formerly a single bond) the fatty acids. the designation omega-6 and omega-3 refers to the position of the double bond. so, if you are lacking in the delta^{6} desaturase, you have elevated levels of omega-3 c.f omega-6, which in turn leads (to among other things) to an important precursor for arachadonic acid, which in turn goes to things that help relieve pain, etc. (the stuff in question is cis-linoleic acid). now, pyroluria is the opposite, but the one abstract i am reading indicates that elevated cic-linoleic levels are not due to mutant delta^{6} desaturase, but to something else. so, fasting insulin levels get higher, and some compound they refer to as a urinary kryptopyrolle shows up. The part that interests me is that this condition has either been renamed or dismissed as being something that can be addressed with proper omega-3/omega-6 supplementation or ruling out diabetes (i'm uessing mellitus). heck, it's not even in the DSM-IV TR. maybe i'm looking in the wrong places, but it sounds like this could have been a medical hypothesis that didn't make the grade....in any event, i wish you well, and hope this helps (i sure learned a lot!)....all the best, chemist
>It crossed my mind that it could be a medical hypothesis that didn't make the grade, but still I do test high for kryptopyroles and I fit all of the symptoms of "pyroluria". I just don't know exactly what to do with the info. Dr. Pfeiffer (no longer living) started the research on pyrolluria when working with schizophrenic patients, and Dr. Walsh at the Pfeiffer Clinic near Chicago is continuing his research. Well, thanks again. I will keep plugging along. It sounds like supplementing GLAs couldn't hurt though, huh?
Posted by chemist on June 21, 2004, at 11:22:34
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » chemist, posted by Simus on June 21, 2004, at 10:52:29
no problems, i learned a lot....i would go ahead and load up on the omega's as you suggest.....they are also good for mood stabilization......all the best, chemist
> Sorry to put you to so much work, Chemist, but thanks.
>
> >deficient in an enzyme called delta^{6} desaturase. as the name implies, desaturases take saturated fatty acids and desaturate (i.e., induce the formation of a double bond where there was formerly a single bond) the fatty acids. the designation omega-6 and omega-3 refers to the position of the double bond. so, if you are lacking in the delta^{6} desaturase, you have elevated levels of omega-3 c.f omega-6, which in turn leads (to among other things) to an important precursor for arachadonic acid, which in turn goes to things that help relieve pain, etc. (the stuff in question is cis-linoleic acid). now, pyroluria is the opposite, but the one abstract i am reading indicates that elevated cic-linoleic levels are not due to mutant delta^{6} desaturase, but to something else. so, fasting insulin levels get higher, and some compound they refer to as a urinary kryptopyrolle shows up. The part that interests me is that this condition has either been renamed or dismissed as being something that can be addressed with proper omega-3/omega-6 supplementation or ruling out diabetes (i'm uessing mellitus). heck, it's not even in the DSM-IV TR. maybe i'm looking in the wrong places, but it sounds like this could have been a medical hypothesis that didn't make the grade....in any event, i wish you well, and hope this helps (i sure learned a lot!)....all the best, chemist
> >
>
> It crossed my mind that it could be a medical hypothesis that didn't make the grade, but still I do test high for kryptopyroles and I fit all of the symptoms of "pyroluria". I just don't know exactly what to do with the info. Dr. Pfeiffer (no longer living) started the research on pyrolluria when working with schizophrenic patients, and Dr. Walsh at the Pfeiffer Clinic near Chicago is continuing his research. Well, thanks again. I will keep plugging along. It sounds like supplementing GLAs couldn't hurt though, huh?
Posted by Larry Hoover on June 21, 2004, at 11:32:40
In reply to Pyroluria: Larry H., chemist, anyone...any help?, posted by Simus on June 21, 2004, at 0:20:39
> After a lifetime of illness, both physical and mental, I did some on-line investigation and matched my ongoing symptoms to pyroluria.
I take it you're read descriptions along the line of this one?
http://drkaslow.com/html/pyroluria.html> A positive test confirmed my suspicion.
Did you have a blood level of cis-linoleic acid done? And how is your glucose tolerance?
> First of all, can someone tell me why the medical community generally seems to not be familiar with this condition?
I think it is seen as an idiopathic quirk, something unusual about a subject, but not pathological.
> Second, I am having only moderate success treating it with supplements.
You have seen some improvement, then?
> The meds I am on are 150mg Wellbutrin and 1mg Xanax (after eight years of SSRIs). I supplement with a multivitamin, B6, zinc, magnesium/calcium, C, and quercetin daily.
How much zinc and B-6?
> And I take B3, B5, B12, Evening Primrose oil, and a few other supplements, but not quite on a daily basis. I drink ginseng/ginger/green teas daily which does help.
How much EPO?
> I would be appreciative for any response. Thanks in advance.
I'm going to go into more detail in my comments to chemist's post, but one of the key issues is indeed the activity of delta-6-desaturase. There may be other reasons for pyroluria, however, it is the prime place to start.
If you have defective d-6-d, you do not convert the dietary essential fatty acid cis-linoleic to the intermediate gamma-linolenic acid. All adverse health effects stem from this, directly. High urinary pyrroles infer high blood pyrroles. Pyrroles bind to and inactivate B-6 and zinc, and pull them into the urine. So, you develop symptoms of malnutrition, despite an adequate diet, even with some supplements.
So, on the assumption that your body is pyrrolic due to GLA deficiency, the key thing is to dramatically increase your *daily* intake of GLA. EPO is one source, but on a gram-per-gram basis, borage oil has more GLA. It may take a long time for you to notice the benefits of supplementing GLA, because every cell membrane in your whole body will be competing for restoration of a normal fatty acid balance.
Every third or fourth day, take fish oil. Fish oil competes with GLA in some respects. That is both good and bad (I'll spare you the details), but taking GLA every day (e.g. 6-10 grams of borage oil), and 3-6 grams of fish oil every fourth day, balances out the effects. Take these oils with your fattiest meal of the day. If digestive upset occurs, cut the dose and increase as tolerance occurs. Your body will adapt.
Lar
Posted by Larry Hoover on June 21, 2004, at 11:50:03
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Simus, posted by chemist on June 21, 2004, at 8:16:57
I fear you may have stepped a little outside your "comfort zone" on this topic....
> hello there, chemist here.....this one threw me for a loop! i couldn't even find the word ``pyroluria'' in my merck manual, my taber's, even voet and voet on the off-chance, and even checked my webster's. doesn't even make an appearance in goodwin and jamison, although that is the definitive text for manic depression....so i hit pubmed - what else to do - and got 2 hits: number one is entitled ``Pyroluria: a poor marker in chronic schizophrenia,'' Am. J. Psychiatry 135:1239-1240 (1976), no abstact, and i'm not heading down to the library for this one. the second hit is more informative, ``A new prostaglandin disturbance syndrome in schizophrenia,'' Med Hypotheses 19:333-338 (1986) where the hypotheses that some schizophrenics are deficient in an enzyme called delta^{6} desaturase. as the name implies, desaturases take saturated fatty acids and desaturate (i.e., induce the formation of a double bond where there was formerly a single bond) the fatty acids. the designation omega-6 and omega-3 refers to the position of the double bond.
Of one particular double-bond, counted from the methyl terminus. The omega-count (omega being the last letter in the Greek alphabet) is the only exception I can think of which increases towards the functional group. Omega is the "inverse", sort of, of the alpha beta gamma designation.
> so, if you are lacking in the delta^{6} desaturase, you have elevated levels of omega-3 c.f omega-6,
Delta-6 is not the same bond as omega-6. In fact, the actual bond affected depends on intermediate bonds in the molecule. Delta-6 desaturase deficiency prevents the conversion of cis-linoleic acid (18:2, omega-6) to gamma-linolenic acid (18:3, omega-6). GLA is a precursor to arichidonic acid (20:4, omega-6) via dihomogamma-linolenic acid (18:4, omega-6).
Omega-3 fatty acids have higher affinity for the normal d-6-d enzyme, but the deficiencies conferred by defective d-6-d are modulated by dietary factors.
> which in turn leads (to among other things) to an important precursor for arachadonic acid, which in turn goes to things that help relieve pain, etc. (the stuff in question is cis-linoleic acid).
Arichidonic acid goes to pro-inflammatory prostaglandins. Pain relief comes from omega-3 products, or an alternate pathway that arises from GLA.
> now, pyroluria is the opposite, but the one abstract i am reading indicates that elevated cic-linoleic levels are not due to mutant delta^{6} desaturase, but to something else.
Now, that has me interested. What something else?
> so, fasting insulin levels get higher, and some compound they refer to as a urinary kryptopyrolle shows up.
Arising from disturbances in heme homeostasis.
> the part that interests me is that this condition has either been renamed or dismissed as being something that can be addressed with proper omega-3/omega-6 supplementation or ruling out diabetes (i'm uessing mellitus).
There is substantial evidence that the increase in many health problems today are due to poly-unsaturated fatty acid deficiencies, but particularly those in the omega-3 class. The historical dietary ratio (pre-agriculture) of omega-6: omega-3 was likely about 1:1. It is currently estimated at anywhere between 30:1 and 200:1, primarily due to the intake of vegetable oils.
> heck, it's not even in the DSM-IV TR. maybe i'm looking in the wrong places, but it sounds like this could have been a medical hypothesis that didn't make the grade....in any event, i wish you well, and hope this helps (i sure learned a lot!)....all the best, chemist
That's what I love about questions. Keep 'em coming!
Lar
Posted by joebob on June 21, 2004, at 11:57:57
In reply to Pyroluria: Larry H., chemist, anyone...any help?, posted by Simus on June 21, 2004, at 0:20:39
man's type info...
and sometimes wonder if a lot of us might benefit from taking the analyis they offer
Posted by chemist on June 21, 2004, at 14:54:19
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » chemist, posted by Larry Hoover on June 21, 2004, at 11:50:03
> I fear you may have stepped a little outside your "comfort zone" on this topic....
>
****lar, you nailed it.....except i did know about the omega 3/6 count from the non-acidic end of the fatty acid, it's pretty clear i got an education from you. thanks for taking me to school! all the best, chemist********
*****btw, the one abstract that notes that d-6-d function might be altered by something other than a mutation does not mention what that ``something else'' is in the abstract i was reading....gotta get me lazy self to the library*******
> > hello there, chemist here.....this one threw me for a loop! i couldn't even find the word ``pyroluria'' in my merck manual, my taber's, even voet and voet on the off-chance, and even checked my webster's. doesn't even make an appearance in goodwin and jamison, although that is the definitive text for manic depression....so i hit pubmed - what else to do - and got 2 hits: number one is entitled ``Pyroluria: a poor marker in chronic schizophrenia,'' Am. J. Psychiatry 135:1239-1240 (1976), no abstact, and i'm not heading down to the library for this one. the second hit is more informative, ``A new prostaglandin disturbance syndrome in schizophrenia,'' Med Hypotheses 19:333-338 (1986) where the hypotheses that some schizophrenics are deficient in an enzyme called delta^{6} desaturase. as the name implies, desaturases take saturated fatty acids and desaturate (i.e., induce the formation of a double bond where there was formerly a single bond) the fatty acids. the designation omega-6 and omega-3 refers to the position of the double bond.
>
> Of one particular double-bond, counted from the methyl terminus. The omega-count (omega being the last letter in the Greek alphabet) is the only exception I can think of which increases towards the functional group. Omega is the "inverse", sort of, of the alpha beta gamma designation.
>
> > so, if you are lacking in the delta^{6} desaturase, you have elevated levels of omega-3 c.f omega-6,
>
> Delta-6 is not the same bond as omega-6. In fact, the actual bond affected depends on intermediate bonds in the molecule. Delta-6 desaturase deficiency prevents the conversion of cis-linoleic acid (18:2, omega-6) to gamma-linolenic acid (18:3, omega-6). GLA is a precursor to arichidonic acid (20:4, omega-6) via dihomogamma-linolenic acid (18:4, omega-6).
>
> Omega-3 fatty acids have higher affinity for the normal d-6-d enzyme, but the deficiencies conferred by defective d-6-d are modulated by dietary factors.
>
> > which in turn leads (to among other things) to an important precursor for arachadonic acid, which in turn goes to things that help relieve pain, etc. (the stuff in question is cis-linoleic acid).
>
> Arichidonic acid goes to pro-inflammatory prostaglandins. Pain relief comes from omega-3 products, or an alternate pathway that arises from GLA.
>
> > now, pyroluria is the opposite, but the one abstract i am reading indicates that elevated cic-linoleic levels are not due to mutant delta^{6} desaturase, but to something else.
>
> Now, that has me interested. What something else?
>
> > so, fasting insulin levels get higher, and some compound they refer to as a urinary kryptopyrolle shows up.
>
> Arising from disturbances in heme homeostasis.
>
> > the part that interests me is that this condition has either been renamed or dismissed as being something that can be addressed with proper omega-3/omega-6 supplementation or ruling out diabetes (i'm uessing mellitus).
>
> There is substantial evidence that the increase in many health problems today are due to poly-unsaturated fatty acid deficiencies, but particularly those in the omega-3 class. The historical dietary ratio (pre-agriculture) of omega-6: omega-3 was likely about 1:1. It is currently estimated at anywhere between 30:1 and 200:1, primarily due to the intake of vegetable oils.
>
> > heck, it's not even in the DSM-IV TR. maybe i'm looking in the wrong places, but it sounds like this could have been a medical hypothesis that didn't make the grade....in any event, i wish you well, and hope this helps (i sure learned a lot!)....all the best, chemist
>
> That's what I love about questions. Keep 'em coming!
>
> Lar
>
>
Posted by Simus on June 21, 2004, at 16:22:19
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Simus, posted by Larry Hoover on June 21, 2004, at 11:32:40
Thanks, Larry.
> > After a lifetime of illness, both physical and mental, I did some on-line investigation and matched my ongoing symptoms to pyroluria.
>
> I take it you're read descriptions along the line of this one?
> http://drkaslow.com/html/pyroluria.html
>
Yes, that was one of the sites I visited. But I kept migrating back to the work done by Dr. Pfeiffer and Dr. Walsh at the Pfeiffer Center. Have you heard of them or their work? It seemed to me to be credible.> > A positive test confirmed my suspicion.
>
> Did you have a blood level of cis-linoleic acid done? And how is your glucose tolerance?
>
My Fasting Plasma Glucose is 91 (<100 = normal). Is that what you meant by glucose tolerance? I haven't heard of a cis-linoleic acid test. My total cholesterol is 149, LDL is 69, HDL is 38, and Triglycerides are 206. I know it isn't what you asked for, but it may or may not be of help to you to know that my cholesterol levels have been very low (perhaps too low ?)all my life.> > First of all, can someone tell me why the medical community generally seems to not be familiar with this condition?
>
> I think it is seen as an idiopathic quirk, something unusual about a subject, but not pathological.Can you help me to understand what you mean by this, Larry?
>
> > Second, I am having only moderate success treating it with supplements.
>
> You have seen some improvement, then?Yes. Within 30 minutes of trying the B6 (50mg P5P/PAK) supplements, the "brain fog" immediately disappeared. But it did slowly return as the day wore on. Although the next doses helped, I didn't see as dramatic of an effect as with the first dose. But then, I was in really bad shape mentally before the first dose. I have been constantly improving since. It has been slow, but then I am not the most patient person. The zinc supplements actually caused me to feel worse, but that was explained as the zinc was causing the excess copper in the organs to mobilize (apparently caused by years of zinc deficiency). I lowered the dose of zinc from 75mg to 25mg, and that helped considerably. The tea I drink daily that contains ginseng, ginger, and green tea definitely helps. It helps calm anxiety symptoms and lifts mild depression.
>
> > The meds I am on are 150mg Wellbutrin and 1mg Xanax (after eight years of SSRIs). I supplement with a multivitamin, B6, zinc, magnesium/calcium, C, and quercetin daily.
>
> How much zinc and B-6?
>
> > And I take B3, B5, B12, Evening Primrose oil, and a few other supplements, but not quite on a daily basis. I drink ginseng/ginger/green teas daily which does help.
>
> How much EPO?
>
> > I would be appreciative for any response. Thanks in advance.
>
> I'm going to go into more detail in my comments to chemist's post, but one of the key issues is indeed the activity of delta-6-desaturase. There may be other reasons for pyroluria, however, it is the prime place to start.
>
> If you have defective d-6-d, you do not convert the dietary essential fatty acid cis-linoleic to the intermediate gamma-linolenic acid. All adverse health effects stem from this, directly. High urinary pyrroles infer high blood pyrroles.Are you saying that defective d-6-d can cause high blood pyrroles, or am I misunderstanding you?
> Pyrroles bind to and inactivate B-6 and zinc, and pull them into the urine. So, you develop symptoms of malnutrition, despite an adequate diet, even with some supplements.
>
> So, on the assumption that your body is pyrrolic due to GLA deficiency, the key thing is to dramatically increase your *daily* intake of GLA. EPO is one source, but on a gram-per-gram basis, borage oil has more GLA. It may take a long time for you to notice the benefits of supplementing GLA, because every cell membrane in your whole body will be competing for restoration of a normal fatty acid balance.
>
> Every third or fourth day, take fish oil. Fish oil competes with GLA in some respects. That is both good and bad (I'll spare you the details), but taking GLA every day (e.g. 6-10 grams of borage oil), and 3-6 grams of fish oil every fourth day, balances out the effects. Take these oils with your fattiest meal of the day. If digestive upset occurs, cut the dose and increase as tolerance occurs. Your body will adapt.
>
> LarWow. Thanks! I will assume you can tolerate a stupid question here. Is fish oil CLA? If not, would taking CLA be harmful to me if I am deficient in GLA? I am not taking it - just curious.
Posted by Ed O`Flaherty on June 25, 2004, at 6:10:51
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Larry Hoover, posted by Simus on June 21, 2004, at 16:22:19
I have found it worthwhile to check for pyroluria in many patients and would do so routinely for schizophrenic and bipolar patients.I do it often too in those with depression.Sometimes they start to get better with treatment after a few days if they have high kryptopyrroles in the urine.I have a piece about it in my website at www.omega3.20megsfree.com in the "Where is omega-3 useful" page.The page "Alternative
Mental Health" covers the views of Dr William Walsh Ph.D. of the Pfeiffer Center in Chicago and contain a wealth of information on many conditions.
Posted by simus on June 25, 2004, at 11:33:39
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help?, posted by Ed O`Flaherty on June 25, 2004, at 6:10:51
Thank you so much. I am doing so much better than before the B6 and zinc, but I had been only taking small doses of the Omega 6 oils on an occasional basis. All of the responses I received here have helped me to realize the importance of a good quality Omega 6 taken daily.
By the way, I loved the photos on your website. Thanks for sharing.
Posted by Larry Hoover on July 3, 2004, at 11:38:19
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Larry Hoover, posted by Simus on June 21, 2004, at 16:22:19
> Thanks, Larry.
You're welcome. I'm sorry I dropped out of the discussion just when it was getting focussed. Real-life demands on my time, eh?
>
> > > After a lifetime of illness, both physical and mental, I did some on-line investigation and matched my ongoing symptoms to pyroluria.
> >
> > I take it you're read descriptions along the line of this one?
> > http://drkaslow.com/html/pyroluria.html
> >
> Yes, that was one of the sites I visited. But I kept migrating back to the work done by Dr. Pfeiffer and Dr. Walsh at the Pfeiffer Center. Have you heard of them or their work? It seemed to me to be credible.Yes, it is, to a point. It seems to have stalled out twenty years ago, though. Nothing new. That concerns me. Second, I have had detailed interactions with people attending Pfeiffer, and I'm left with some serious concerns....lots of expensive tests, and lots of expensive supplements, less-than-ideal guidance (preprinted forms given by nurses, for example), and lack of efficacy over time.
> > > A positive test confirmed my suspicion.
> >
> > Did you have a blood level of cis-linoleic acid done? And how is your glucose tolerance?
> >
> My Fasting Plasma Glucose is 91 (<100 = normal). Is that what you meant by glucose tolerance?Yes, along that line. That seems fine. Glucose tolerance is more specific, in that a fasting person is given a measured dose of glucose, and the insulin response and changes in blood glucose concentration in a set time, are measured.
> I haven't heard of a cis-linoleic acid test.
I was trying to understand what you meant by "a positive test confirmed my suspicion". I was wondering if you had actual fatty acid compositions tested.
> My total cholesterol is 149, LDL is 69, HDL is 38, and Triglycerides are 206. I know it isn't what you asked for, but it may or may not be of help to you to know that my cholesterol levels have been very low (perhaps too low ?)all my life.
Actually, long-term low cholesterol is its own risk factor. Cholesterol is the raw material for all the steroids, including e.g testosterone. Low cholesterol might be a unique trigger for depression.
> > > First of all, can someone tell me why the medical community generally seems to not be familiar with this condition?
> >
> > I think it is seen as an idiopathic quirk, something unusual about a subject, but not pathological.
>
> Can you help me to understand what you mean by this, Larry?When a doctor doesn't find a pathological mechanism (i.e. an accepted disease cause and effect relationship) to explain an unusual biochemical finding, they shrug and say "it's idiopathic", which just means you're unique. For example, having protein in the urine can be a finding related to kidney disease, or it can just be how that person normally is (idiopathic), and unrelated to disease.
> > > Second, I am having only moderate success treating it with supplements.
> >
> > You have seen some improvement, then?
>
> Yes. Within 30 minutes of trying the B6 (50mg P5P/PAK) supplements, the "brain fog" immediately disappeared. But it did slowly return as the day wore on. Although the next doses helped, I didn't see as dramatic of an effect as with the first dose.That's frequently how supplements seem to be. It doesn't change your need for the supplement. It is your perception that is changed.
> But then, I was in really bad shape mentally before the first dose. I have been constantly improving since. It has been slow, but then I am not the most patient person. The zinc supplements actually caused me to feel worse, but that was explained as the zinc was causing the excess copper in the organs to mobilize (apparently caused by years of zinc deficiency).
That's not how it works. Zinc in the gut reduces copper uptake from the gut. Zinc doesn't mobilize copper inside the body, as far as I have ever heard. Long-term zinc excess leads to copper deficiency (zinc is a treatment for Wilson's disease, which is excess tissue storage of copper). Zinc deficiency can lead to general increases in copper uptake (particularly where copper plumbing is common). It's an uptake regulation issue, not a biochemical one.
> I lowered the dose of zinc from 75mg to 25mg, and that helped considerably.
75 mg is above the recommended UL (Upper Limit) of zinc intake. 25 mg is fine.
> The tea I drink daily that contains ginseng, ginger, and green tea definitely helps. It helps calm anxiety symptoms and lifts mild depression.
You are getting psychoactive alkaloids, and high doses of phenolic antioxidants. No problems with any of that.
> > If you have defective d-6-d, you do not convert the dietary essential fatty acid cis-linoleic to the intermediate gamma-linolenic acid. All adverse health effects stem from this, directly. High urinary pyrroles infer high blood pyrroles.
>
> Are you saying that defective d-6-d can cause high blood pyrroles, or am I misunderstanding you?That's exactly right.
> > Pyrroles bind to and inactivate B-6 and zinc, and pull them into the urine. So, you develop symptoms of malnutrition, despite an adequate diet, even with some supplements.
> >
> > So, on the assumption that your body is pyrrolic due to GLA deficiency, the key thing is to dramatically increase your *daily* intake of GLA. EPO is one source, but on a gram-per-gram basis, borage oil has more GLA. It may take a long time for you to notice the benefits of supplementing GLA, because every cell membrane in your whole body will be competing for restoration of a normal fatty acid balance.
> >
> > Every third or fourth day, take fish oil. Fish oil competes with GLA in some respects. That is both good and bad (I'll spare you the details), but taking GLA every day (e.g. 6-10 grams of borage oil), and 3-6 grams of fish oil every fourth day, balances out the effects. Take these oils with your fattiest meal of the day. If digestive upset occurs, cut the dose and increase as tolerance occurs. Your body will adapt.
> >
> > Lar
>
> Wow. Thanks! I will assume you can tolerate a stupid question here.The only definition of stupid question that I will accept is one that is not asked.
> Is fish oil CLA? If not, would taking CLA be harmful to me if I am deficient in GLA? I am not taking it - just curious.
This whole fatty acid thing is exceedingly complicated. I've had trouble learning some of it myself, and I'm a chemist.
CLA is conjugated linolenic acid. It is produced by microbial changes in the bond positions of linolenic acid during digestion, particularly in ruminant animals (e.g. cows).
Ordinarily, the double bond positions in linolenic acid are three carbons apart. Critters in cow stomachs have enzymes which bind to those double-bonded carbons, creating a reactive intermediate that sometimes "bounces off" the enzyme instead of being fully reacted. When the bonds get stable again, they sometimes move so they are only two carbons apart. Chemist geeks call that conjugation, when double bonds are two carbons apart. Anyway, the net effect is that butterfat, or more generally, milkfat, has CLA in it, as well as linolenic acid.
Synthetic CLA is produced by reacting linolenic acid with harsh chemicals. You get conjugated products that are different from the natural ones. As luck would have it, synthetic CLA is the one which is associated with health effects like fat loss.
CLA would not substantially interfere with the health effects of GLA or fish oil supplements, as far as I can tell.
Lar
Posted by Larry Hoover on July 3, 2004, at 11:42:19
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Ed O`Flaherty, posted by simus on June 25, 2004, at 11:33:39
> Thank you so much. I am doing so much better than before the B6 and zinc, but I had been only taking small doses of the Omega 6 oils on an occasional basis. All of the responses I received here have helped me to realize the importance of a good quality Omega 6 taken daily.
I want to emphasize something, here. Gamma-linolenic acid is a rather rare omega-6 fatty acid. Most people get far far too much omega-6 fatty acids in their diet (I'm talking linoleic acid), due to the huge amounts of vegetable oils and vegetable oil products used in the commercial food industry. I would only ever recommend the specific omega-6 fat, GLA, for supplementation. Not omega-6 as a class.
Lar
Posted by Simus on July 4, 2004, at 0:11:30
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Simus, posted by Larry Hoover on July 3, 2004, at 11:38:19
> I'm sorry I dropped out of the discussion just when it was getting focussed. Real-life demands on my time, eh?
No problem. I am appreciative of any help.
> > work done by Dr. Pfeiffer and Dr. Walsh at the Pfeiffer Center. Have you heard of them or their work? It seemed to me to be credible.
> Yes, it is, to a point. It seems to have stalled out twenty years ago, though. Nothing new. That concerns me.That bothered me too...
> Second, I have had detailed interactions with people attending Pfeiffer, and I'm left with some serious concerns....lots of expensive tests, and lots of expensive supplements, less-than-ideal guidance (preprinted forms given by nurses, for example), and lack of efficacy over time.
I actually had an appointment and cancelled based on what I read here on PBA.> > > A positive test confirmed my suspicion.
> I was trying to understand what you meant by "a positive test confirmed my suspicion". I was wondering if you had actual fatty acid compositions tested.It was a urine pyrrole test.
> > My total cholesterol is 149, LDL is 69, HDL is 38, and Triglycerides are 206. I know it isn't what you asked for, but it may or may not be of help to you to know that my cholesterol levels have been very low (perhaps too low ?)all my life.
> Actually, long-term low cholesterol is its own risk factor. Cholesterol is the raw material for all the steroids, including e.g testosterone. Low cholesterol might be a unique trigger for depression.I have read that too. Do you think that increasing the GLAs will have a direct effect on cholesterol by any chance?
> Zinc in the gut reduces copper uptake from the gut. Zinc doesn't mobilize copper inside the body, as far as I have ever heard. Long-term zinc excess leads to copper deficiency (zinc is a treatment for Wilson's disease, which is excess tissue storage of copper). Zinc deficiency can lead to general increases in copper uptake (particularly where copper plumbing is common). It's an uptake regulation issue, not a biochemical one.I didn't know that. So is there something that actually can draw excess metals like copper or even mercury out of tissues?
> > Wow. Thanks! I will assume you can tolerate a stupid question here.
>
> The only definition of stupid question that I will accept is one that is not asked.Now I see why you were so missed here at PBA for a while! Thanks for everything, Lar.
Posted by Simus on July 4, 2004, at 0:23:04
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » simus, posted by Larry Hoover on July 3, 2004, at 11:42:19
Thanks for the clarification. I have learned a lot, but have a long way to go...
Posted by Larry Hoover on July 4, 2004, at 10:01:41
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Simus, posted by Larry Hoover on July 3, 2004, at 11:38:19
I said:
> CLA is conjugated linolenic acid. It is produced by microbial changes in the bond positions of linolenic acid during digestion, particularly in ruminant animals (e.g. cows).CLA is conjugated linoleic acid. Linoleic is not the same as linolenic (what I said the first time). Chemists call names like 'linoleic acid' trivial names. In other words, they're what we always called this stuff, but it has no relationship to what the stuff is. I think in a different terminology system, called IUPAC. It makes mistakes nearly impossible. Believe it or not, I prefer the name cis-9,cis-12-octadecadienoic acid over linoleic acid. I make mistakes translating back to trivial language, though, like saying linolenic when I mean linoleic.
Lar
Posted by Simus on July 4, 2004, at 22:46:26
In reply to Re: About CLA...correction, posted by Larry Hoover on July 4, 2004, at 10:01:41
> I said:
> > CLA is conjugated linolenic acid. It is produced by microbial changes in the bond positions of linolenic acid during digestion, particularly in ruminant animals (e.g. cows).
>
> CLA is conjugated linoleic acid. Linoleic is not the same as linolenic (what I said the first time). Chemists call names like 'linoleic acid' trivial names. In other words, they're what we always called this stuff, but it has no relationship to what the stuff is. I think in a different terminology system, called IUPAC. It makes mistakes nearly impossible. Believe it or not, I prefer the name cis-9,cis-12-octadecadienoic acid over linoleic acid. I make mistakes translating back to trivial language, though, like saying linolenic when I mean linoleic.
>
> Lar=) My sister is a chemical engineer, and she completely understands you. But then, she is a little different... LOL I only say that because I am a mechanical engineer and she thinks I am a little odd... Ok, so I am somewhat "retentive", but at least I don't wear a pocket protector (anymore).
Posted by Lucera on December 8, 2004, at 13:26:21
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » simus, posted by Larry Hoover on July 3, 2004, at 11:42:19
Imagine my surprise! I sent my adhd kid's urine for Pyrroles testing (he fit descriptions) and I send my youngest and myself too just because they sent me extra testing tubes for future testings... Imagine my surprise! My kids are fine but I have pyroluria!!! All these years of "unexplainable" problems and thre it was...
I has suffred from a total lack of appetite since the age of 4, white spots in the nails, inability to tan including bad sunburns and heat rash and a constant low grade depression and irritability that every doctor attributed to my "hating being so skinny"
Another doctor said it was "atypical anorexia" - Weel, if you cry all the time because you are too skinny that is not anorexia!!! Atypical or not!!!
So here we are 30 years later... I started B-6 and my mood brightened right away!
My problem is with Fatty acids: GLA versus Omega -3's
Why would omega-3s be bad for pyroluria?? isn't it supposed to be good for moods / attention?
Should I just take both?? I have read somewhere that the fish oils would be make me worse? why????
Thanks for anyone responding - chemist??
M
Posted by Ed O`Flaherty on December 9, 2004, at 3:11:54
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help?, posted by Lucera on December 8, 2004, at 13:26:21
> Imagine my surprise! I sent my adhd kid's urine for Pyrroles testing (he fit descriptions) and I send my youngest and myself too just because they sent me extra testing tubes for future testings... Imagine my surprise! My kids are fine but I have pyroluria!!! All these years of "unexplainable" problems and thre it was...
>
> I has suffred from a total lack of appetite since the age of 4, white spots in the nails, inability to tan including bad sunburns and heat rash and a constant low grade depression and irritability that every doctor attributed to my "hating being so skinny"
>
> Another doctor said it was "atypical anorexia" - Weel, if you cry all the time because you are too skinny that is not anorexia!!! Atypical or not!!!
>
> So here we are 30 years later... I started B-6 and my mood brightened right away!
>
> My problem is with Fatty acids: GLA versus Omega -3's
>
> Why would omega-3s be bad for pyroluria?? isn't it supposed to be good for moods / attention?
>
> Should I just take both?? I have read somewhere that the fish oils would be make me worse? why????
>
> Thanks for anyone responding - chemist??
>
> MOmega-3 is not bad for Pyroluria in itself but it may block the absorption of GLA due to using the same enzyme system.The priority at present would be to elevate your B6 (and perhaps the P5P version of B6) plus zinc as well as the GLA. Manganese,vit C and E are often used in addition to the basic treatment.
Posted by barbaracat on December 11, 2004, at 0:36:14
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help?, posted by Ed O`Flaherty on December 9, 2004, at 3:11:54
Hi Ed,
Enjoyed your website. I've been wanting to get the various Pfeiffer Institute testing done for some time now but can't afford the out of state visits to the clinic. I have an alternative-oriented doctor who is totally clueless to these exotic mood disorder tests but seems willing to order them up for me. I just have to direct him. After receiving back the results I doubt he'll be able to interpret them but I'm hoping that the lab results will have some recommendations.My question is, is there a listing anywhere of which tests to order and a good lab from which to order them? My dx is hypothyroid (already got that handled), fibromyalgia and bipolar-II, mainly depressive with anxiety, but who the heck really knows. I'm hoping narrowing down some biochemical disorder will help. Thanks. - BarbaraCat
Posted by Ed O`Flaherty on December 11, 2004, at 15:51:42
In reply to Exotic tests » Ed O`Flaherty, posted by barbaracat on December 11, 2004, at 0:36:14
> Hi Ed,
> Enjoyed your website. I've been wanting to get the various Pfeiffer Institute testing done for some time now but can't afford the out of state visits to the clinic. I have an alternative-oriented doctor who is totally clueless to these exotic mood disorder tests but seems willing to order them up for me. I just have to direct him. After receiving back the results I doubt he'll be able to interpret them but I'm hoping that the lab results will have some recommendations.
>
> My question is, is there a listing anywhere of which tests to order and a good lab from which to order them? My dx is hypothyroid (already got that handled), fibromyalgia and bipolar-II, mainly depressive with anxiety, but who the heck really knows. I'm hoping narrowing down some biochemical disorder will help. Thanks. - BarbaraCatDear BarbaraCat,
As regards Fibromyaslgia I have found it useful to prescribe naltrexone 4.5mg at bedtime.After a few months patients seem to be a good deal better painwise and in better form too.See www.lowdosenaltrexone.org.As regards the Pfeiffer tests I know they do over a hunded tests but I cannot go into the details here. It costs over $3,000 to get those tests done there.It seems to me to be a good long-term investment in one`s mental health-it can be done in a day and they visit different places around the states too.Mind you,you will have to buy various nutrients in due course but many people with rapid cycling bipolar for example have only a kryptopyrrole disorder which I have seen improve greatly in a matter of weeks.See www.hriptc.org.I would like to acknowledge how much I have learned from their experience. I do some of the Pfeiffer tests in my own practice in Ireland and as a result there are many people whose mental health has improved greatly,especially young people or those who are ill for less than 10 years.
Posted by barbaracat on December 12, 2004, at 16:31:31
In reply to Re: Exotic tests, posted by Ed O`Flaherty on December 11, 2004, at 15:51:42
Hi Ed,
I've always suspected a pyrrole disorder in my father. He fit the classic definition and I believe his violence was now due to this. Poor man. Complete with skin blotching, sunburn, etc. Although alot of my internal feelings sound similar to a kryptopyrrole disorder, I have none of the outward signs. I tan beautifully, no paleness or blotchniess of pigment, no white spots in fingernails which are long and healthy. Have you found in your practice this kind of mixed signs with these chemical disorders? I would think in the case of pyrrole disorder it would manifest outwardly as well. On the other hand, if my father likely had it, genetically I would be suspect as well.I have been to the Pfeiffer website many times. Have you heard about the Olive Garvey Center which does similar testing? Here's there website. I've heard good things about it and their superior followup compared to Pfeiffer's.
> As regards Fibromyaslgia I have found it useful to prescribe naltrexone 4.5mg at bedtime.After a few months patients seem to be a good deal better painwise and in better form too.See www.lowdosenaltrexone.org.As regards the Pfeiffer tests I know they do over a hunded tests but I cannot go into the details here. It costs over $3,000 to get those tests done there.It seems to me to be a good long-term investment in one`s mental health-it can be done in a day and they visit different places around the states too.Mind you,you will have to buy various nutrients in due course but many people with rapid cycling bipolar for example have only a kryptopyrrole disorder which I have seen improve greatly in a matter of weeks.See www.hriptc.org.I would like to acknowledge how much I have learned from their experience. I do some of the Pfeiffer tests in my own practice in Ireland and as a result there are many people whose mental health has improved greatly,especially young people or those who are ill for less than 10 years.
Posted by Ed O`Flaherty on December 21, 2004, at 13:40:01
In reply to Re: Exotic tests » Ed O`Flaherty, posted by barbaracat on December 12, 2004, at 16:31:31
My own experience is that about 20% of those with schizophrenia ,bipolar or depression have pyroluria, and the results of the tests are not always what one expects.If somebody is not in a position to have the urine test for kryptopyrroles done then it is probably worth trying the following concoction for 1-3 months to see if it helps:
zinc 25mg daily for a month,increasing to 50mg daily then. Vit B6 200-400 mg daily plus 50mg daily of the P5P version if possible.Evening primrose oil 1g daily,manganese (this is not the same as magnesium)10mg twice daily,Vit C 1g daily and Vit E,preferably the mixed version, 400-800 Units daily. My own experience of this subject suggests that many start to get a response with a week or two and are much better in 3 months.Relapse occurs within a few weeks of stopping too.Nobody is cured but the quality of life can be much better.This list is taken in addition to and not as a replacement for your regular medication.Please discuss it with your pdoc before trying the nutrition.
Posted by barbaracat on December 22, 2004, at 17:50:43
In reply to Re: Exotic tests, posted by Ed O`Flaherty on December 21, 2004, at 13:40:01
I had the kryptopyrole test sent off yesterday. I'll report back with the results. My doctor was hesitant to do the histimine tests because she didn't think I fit the profile and they are expensive. Saving for the last resort.
Would you elaborate on what you mean by the results aren't always as one expects? Are there degrees of pyroluria?
Again, I ask this because my father seemed so classically pyroluric physically and mentally. My doctor agreed that I did not fit the physical profile but because I've taken very good care of myself nutritionally throughout the years, she felt that although I'm not presenting the physical symptoms, it's possible the emotional component might still be present. But heck, if I'm taking care of the physical through proper nutrition, you'd think it would work for the mental as well.
Oh well, I'll wait til my results return. Be real nice to have a magic bullet, but I'm not holding my breath.
Posted by Thomas Anderson on April 10, 2008, at 15:04:27
In reply to Re: Pyroluria: Larry H., chemist, anyone...any help? » Simus, posted by Larry Hoover on June 21, 2004, at 11:32:40
Lar:
This is a very important thread for pyroluria - largely due to your contributions. I wanted to inquire whether you still believe in the clinical utility of GLA, B6, Zinc, etc. for positive testers of "pyroluria" and accompanying pryoluria-type symptoms - despite the condition not being proven conclusively or elucidated.
In an earlier posting, you stated this:
If you have defective d-6-d, you do not convert the dietary essential fatty acid cis-linoleic to the intermediate gamma-linolenic acid. All adverse health effects stem from this, directly. High urinary pyrroles infer high blood pyrroles. Pyrroles bind to and inactivate B-6 and zinc, and pull them into the urine. So, you develop symptoms of malnutrition, despite an adequate diet, even with some supplements.In another forum, you quoted and stated this:
'The haemopyrrollactam
complex represents the so-called mauve spot, which was the subject of much
controversy in schizophrenia research in the previous century. Reviewing all of the
available data, we feel that HPU should be classified as a pseudo-disease.'
Well, that's how I see it, anyway.Your obviously have an impressive understanding of biochemsitry so your opinion is valued. Thanks for your reply,
TA
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