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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 14 of 14. This is the beginning of the thread.
Posted by tendency on September 2, 2004, at 16:23:27
I've just been diagnosed with pyroluria from (what I'm told is) the best lab for this testing in the country. I've also, independantly, had my zinc blood levels tested and they were low, this, even after taking 60mg of zinc per day. Also have done a 'zinc tally' (involves keeping 1T. of some liquid zinc solution in mouth for 10 seconds and see if you have an unpleasant reaction. Tasted like tap water to me).
For treatment it's being recommend that I jack my zinc dose up to 150mg/day and take 300mg b6/day. Is this advisable? Just what is pyroluria? What should I do about my low zinc levels? Thanks!
Posted by Ed O`Flaherty on September 3, 2004, at 4:19:52
In reply to diagnosed with pyroluria - need help!, posted by tendency on September 2, 2004, at 16:23:27
Pyroluria is a disorder of red blood cells which results in a low zinc level,low B6 and also low arachidonic acid,a type of omega-6 fatty acid.Treatment is zinc,B6 and evening primrose or borage oil and fish oil is normally not recommended here.Most psychiatrists have not heard of it in my experience but in my own practice I have found it very worthwhile to do the test on those with schizophrenia,bipolar or depression-I have seen some dramatic results there in a matter of weeks.I recommend 50mg daily of zinc,275mg daily of B6 (preferably the version from nutricology.com as it contains 9% of the active form which is P5P)and also 1,000mg Borage oil.I have some further information on it in www.omega3.20megsfree.com.
Posted by Larry Hoover on September 3, 2004, at 9:06:01
In reply to diagnosed with pyroluria - need help!, posted by tendency on September 2, 2004, at 16:23:27
> I've just been diagnosed with pyroluria from (what I'm told is) the best lab for this testing in the country. I've also, independantly, had my zinc blood levels tested and they were low, this, even after taking 60mg of zinc per day. Also have done a 'zinc tally' (involves keeping 1T. of some liquid zinc solution in mouth for 10 seconds and see if you have an unpleasant reaction. Tasted like tap water to me).
There are four dedicated zinc tranporters (different subtypes). I don't know what to make of your failure to respond to zinc supps (unless you were so very poor that your body isn't doing a whole lot of things very well).
A couple of questions. Are you a dude, or a dudette? I can't remember the person that links to "tendency". Second, do you eat meat?
> For treatment it's being recommend that I jack my zinc dose up to 150mg/day and take 300mg b6/day. Is this advisable?
That is a huge amount of zinc. Is the person recommending it a doctor? Are they going to monitor your response (as in weekly blood tests)? If your uptake improves, at that dose, there can be serious toxic consequences. There's nothing wrong with that dose of B6 (you could probably quintuple it without problem), but you should never take a lone B vitamin. In addition to the B6, always take a B-complex.
> Just what is pyroluria?
With all due respect to Dr. O'Flaherty, the Pfeiffer folk (Walsh et al), and others, the disorder designated as pyroluria is a theoretical construct. The finding of pyrroluria (it really ought to have two rr's) is one thing. It's a real empirical measurement. The implications (the disorder designated as pyroluria) is a theory. I cannot find corroborative medical or biochemical evidence for the theoretical form of pyroluria.
It is believed that plasma pyrroles chelate (bind) zinc and vitamin B-6, and the kidneys inadvertently pull those nutrients out of the blood while disposing of the pyrroles themselves. The obvious treatment is to resupply the body with zinc and B-6. However, I have not yet found just what it is that predisposes to the excess formation of pyrroles in the first place. I'm going to keep on that, but I'm still in 'daddy mode' until tomorrow, so you're just getting the 'off-the-top-of-my-head' reply.
> What should I do about my low zinc levels? Thanks!
Take zinc. But make sure you get retested! It's like starting on lithium therapy....the dose is adjusted based on bloodwork, not on intake per se.
I really think there's a lot more nutritional stuff to consider, but there's no real hurry here. It took years (probably) for your system to get this unbalanced, and it's going to take months (at least) to nudge it back to a healthy equilibrium. More, anon.
Lar
Posted by Larry Hoover on September 3, 2004, at 9:51:35
In reply to Re: diagnosed with pyroluria - need help!, posted by Ed O`Flaherty on September 3, 2004, at 4:19:52
> Pyroluria is a disorder of red blood cells which results in a low zinc level,low B6 and also low arachidonic acid,a type of omega-6 fatty acid.Treatment is zinc,B6 and evening primrose or borage oil and fish oil is normally not recommended here.Most psychiatrists have not heard of it in my experience but in my own practice I have found it very worthwhile to do the test on those with schizophrenia,bipolar or depression-I have seen some dramatic results there in a matter of weeks.I recommend 50mg daily of zinc,275mg daily of B6 (preferably the version from nutricology.com as it contains 9% of the active form which is P5P)and also 1,000mg Borage oil.I have some further information on it in www.omega3.20megsfree.com.
I presume you use the colourimetric assay called the Mauzerall-Granick method. How do you determine the subject is not suffering from porphyria?
Lar
Posted by Larry Hoover on September 3, 2004, at 10:04:21
In reply to diagnosed with pyroluria - need help!, posted by tendency on September 2, 2004, at 16:23:27
> I've just been diagnosed with pyroluria from (what I'm told is) the best lab for this testing in the country. I've also, independantly, had my zinc blood levels tested and they were low, this, even after taking 60mg of zinc per day. Also have done a 'zinc tally' (involves keeping 1T. of some liquid zinc solution in mouth for 10 seconds and see if you have an unpleasant reaction. Tasted like tap water to me).
>
> For treatment it's being recommend that I jack my zinc dose up to 150mg/day and take 300mg b6/day. Is this advisable? Just what is pyroluria? What should I do about my low zinc levels? Thanks!I think you should see a real doctor, and ensure that a diagnosis of porphyria is not valid.
In porphyria, it is possible to see a dramatic increase in urinary PBG (a pyrrole). Porphyria can manifest as psychiatric symptoms, and go undiagnosed for many years.
Psychother Psychosom. 1995;64(3-4):121-30.Porphyria: reexamination of psychiatric implications.
Burgovne K, Swartz R, Ananth J.
Harbor-UCLA Medical Center, Torrance 90509, USA.
Acute intermittent porphyria mimics a variety of commonly occurring disorders and thus poses a diagnostic quagmire. Psychiatric manifestations include hysteria, anxiety, depression, phobias, psychosis, organic disorders, agitation, delirium, and altered consciousness ranging from somnolence to coma. Some patients develop psychosis similar to schizophrenia. Psychiatric hospitals have a disproportionate number of patients with this disorder as only difficult and resistant patients accumulate there. Presence of photosensitive porphyrins in the urine is diagnostic. When porphyrins are absent, excess of alpha aminolevulinic acid and porphobilinogen are present in the urine. The definitive test is to measure monopyrrole porphobilinogen deaminase in RBCs. This diagnosis should be entertained in the following situations: (a) unexplained leukocytosis; (b) unexplained neuropathy; (c) etiologically obscure neurosis or psychosis; (d) 'idiopathic' seizure disorder; (e) unexplained abdominal pain; (f) conversion hysteria, and (g) susceptibility to stress. Porphyria is important in psychiatry as it may present with only psychiatric symptoms; it may masquerade as a psychosis and the patient may be treated as a schizophrenic person for years; the only manifestation may be histrionic personality disorder which may not receive much attention. Diagnosis is based on a high index of suspicion and appropriate investigation. Various psychotropic drugs exacerbate acute attacks. While it is important not to use the unsafe drugs in porphyric patients, it is also imperative to look for this diagnosis in cases where these drugs produce unprecedented drug reactions.
Another interpretation is that there is a normal heme breakdown product in urine. See:Ned Tijdschr Geneeskd. 2003 Sep 6;147(36):1720-1.
[Hemopyrrollactamuria (HPU); from spots to pseudo-disease]
[Article in Dutch]
van der Meer JW, van de Kerkhof R, The GK, Boers GH.
Universitair Medisch Centrum St Radboud, afd. Algemeen Interne Geneeskunde, Postbus 9101, 6500 HB Nijmegen. j.vandermeer@aig.umen.nl
In recent years, patients in the Netherlands confront their doctors with the diagnosis 'haemopyrollactamuria' (HPU), based on the presence of the haemopyrrollactam complex in their urine. The diagnosis is made by a commercial laboratory in the Netherlands (www.keac.nl). We have not been able to find peer-reviewed scientific literature on this metabolic disease. 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.
Regards,
Lar
<back to daddy mode>
Posted by tendency on September 3, 2004, at 16:39:47
In reply to Re: diagnosed with pyroluria - need help! » tendency, posted by Larry Hoover on September 3, 2004, at 9:06:01
> A couple of questions. Are you a dude, or a dudette? I can't remember the person that links to "tendency". Second, do you eat meat?
I'm male. Recently (last 9 months) I've begun to eat red meat several times a month. I know that's supposed to be a good source of zinc, and, since I'm not a vegetarian, maybe I should think about eating it several times a week....> > For treatment it's being recommend that I jack my zinc dose up to 150mg/day and take 300mg b6/day. Is this advisable?
> That is a huge amount of zinc. Is the person recommending it a doctor? Are they going to monitor your response (as in weekly blood tests)? If your uptake improves, at that dose, there can be serious toxic consequences. There's nothing wrong with that dose of B6 (you could probably quintuple it without problem), but you should never take a lone B vitamin. In addition to the B6, always take a B-complex.
No, the person recommending it is a highly recommended clinician ('nutritional psychologist') who I've been working with. She bases these numbers on someone who had good results treating schizophrenics at these doses (can't remember who just now..). She was thinking these doses might be justified as I didn't seem to be responding to the 60-75mg of zinc I had been taking.
> > What should I do about my low zinc levels? Thanks!
>
> Take zinc. But make sure you get retested! It's like starting on lithium therapy....the dose is adjusted based on bloodwork, not on intake per se.I'll make sure to get blood tested regularily, thanks.
> I really think there's a lot more nutritional stuff to consider, but there's no real hurry here. It took years (probably) for your system to get this unbalanced, and it's going to take months (at least) to nudge it back to a healthy equilibrium. More, anon.
Of that I have no doubt. Thanks for input!
Posted by tendency on September 3, 2004, at 16:52:08
In reply to Re: diagnosed with pyroluria - need help! » tendency, posted by Larry Hoover on September 3, 2004, at 10:04:21
>
> I think you should see a real doctor, and ensure that a diagnosis of porphyria is not valid.I'm about to start seeing a holistic osteopath who comes highly recommended in this area. I'll make sure to get his $.02 on the subject.
>
> In porphyria, it is possible to see a dramatic increase in urinary PBG (a pyrrole). Porphyria can manifest as psychiatric symptoms, and go undiagnosed for many years.
>
Porphyria?! Never heard of that..how would I go about getting tested for it? For that matter it may be a challenge to even find a doctor that's familar with it..Thanks for tips and articles. More food for thought.
Posted by Simus on September 3, 2004, at 23:59:25
In reply to Re: diagnosed with pyroluria - need help! » tendency, posted by Larry Hoover on September 3, 2004, at 10:04:21
> "Presence of photosensitive porphyrins in the urine is diagnostic."
Larry, what does this mean?
> In porphyria, it is possible to see a dramatic increase in urinary PBG (a pyrrole). Porphyria can manifest as psychiatric symptoms, and go undiagnosed for many years.
I hate to ask it like this, but I will for lack of better wording. I hope you understand. Could porphyria and "pyroluria" be the same condition and treated the same way? I did test high for pyrroles in the urine, and I am really just trying to understand all of this.
Thanks,
Simus
Posted by Larry Hoover on September 5, 2004, at 10:39:42
In reply to Re: diagnosed with pyroluria - need help!l, posted by tendency on September 3, 2004, at 16:39:47
> > A couple of questions. Are you a dude, or a dudette? I can't remember the person that links to "tendency". Second, do you eat meat?
>
> I'm male. Recently (last 9 months) I've begun to eat red meat several times a month. I know that's supposed to be a good source of zinc, and, since I'm not a vegetarian, maybe I should think about eating it several times a week....Oh, more than just zinc. Your body is red meat.
> > > For treatment it's being recommend that I jack my zinc dose up to 150mg/day and take 300mg b6/day. Is this advisable?
>
> > That is a huge amount of zinc. Is the person recommending it a doctor? Are they going to monitor your response (as in weekly blood tests)? If your uptake improves, at that dose, there can be serious toxic consequences. There's nothing wrong with that dose of B6 (you could probably quintuple it without problem), but you should never take a lone B vitamin. In addition to the B6, always take a B-complex.
>
> No, the person recommending it is a highly recommended clinician ('nutritional psychologist') who I've been working with. She bases these numbers on someone who had good results treating schizophrenics at these doses (can't remember who just now..).Hoffer, probably.
> She was thinking these doses might be justified as I didn't seem to be responding to the 60-75mg of zinc I had been taking.
Just be careful that you are monitored.
> > > What should I do about my low zinc levels? Thanks!
> >
> > Take zinc. But make sure you get retested! It's like starting on lithium therapy....the dose is adjusted based on bloodwork, not on intake per se.
>
> I'll make sure to get blood tested regularily, thanks.Good.
> > I really think there's a lot more nutritional stuff to consider, but there's no real hurry here. It took years (probably) for your system to get this unbalanced, and it's going to take months (at least) to nudge it back to a healthy equilibrium. More, anon.
>
> Of that I have no doubt. Thanks for input!
>
>
Check out my post to Simus, above.Lar
Posted by Larry Hoover on September 5, 2004, at 10:42:02
In reply to Re: diagnosed with pyroluria - need help!, posted by tendency on September 3, 2004, at 16:52:08
> >
> > I think you should see a real doctor, and ensure that a diagnosis of porphyria is not valid.
>
> I'm about to start seeing a holistic osteopath who comes highly recommended in this area. I'll make sure to get his $.02 on the subject.
> >
> > In porphyria, it is possible to see a dramatic increase in urinary PBG (a pyrrole). Porphyria can manifest as psychiatric symptoms, and go undiagnosed for many years.
> >
> Porphyria?! Never heard of that..how would I go about getting tested for it? For that matter it may be a challenge to even find a doctor that's familar with it..
>
> Thanks for tips and articles. More food for thought.Food for thought. Exactly.
See: http://www.porphyriafoundation.com/about_por/testing/testing01e.html
Lar
Posted by Larry Hoover on September 5, 2004, at 10:44:52
In reply to Re: diagnosed with pyroluria - need help! » Larry Hoover, posted by Simus on September 3, 2004, at 23:59:25
> > "Presence of photosensitive porphyrins in the urine is diagnostic."
>
> Larry, what does this mean?You can mix a reagent with urine that forms a coloured product. The intensity of the colour is directly proportional to the concentration of, in this case, a porphyrin. There are special meters to read the depth of the colour.
> > In porphyria, it is possible to see a dramatic increase in urinary PBG (a pyrrole). Porphyria can manifest as psychiatric symptoms, and go undiagnosed for many years.
>
> I hate to ask it like this, but I will for lack of better wording. I hope you understand. Could porphyria and "pyroluria" be the same condition and treated the same way?Yes. Exactly so. Pyrroluria can also be benign (i.e. not a sign of illness at all).
> I did test high for pyrroles in the urine, and I am really just trying to understand all of this.
>
> Thanks,
>
> SimusSo am I.
Lar
Posted by Jaynee on September 11, 2004, at 14:53:26
In reply to Re: diagnosed with pyroluria - need help! » Simus, posted by Larry Hoover on September 5, 2004, at 10:44:52
"Excesses of lead or iron overload syndromes, certain drugs such as barbiturates and sulfonamides along with infections such as the virus that causes hepatitis C can either cause porphyria or bring out latent cases."
I found this info on Canadian porphyria foundation site:
http://www.cpf-inc.ca/guide.htm
I am interested in this topic, because I have hemochromatosis. Not to sure if I should take more zinc, though? I don't think Pyrroluria is a real diagnosis? Correct me if I am wrong.
Posted by tealady on September 11, 2004, at 20:27:16
In reply to Interesting tidbit on porphyria................, posted by Jaynee on September 11, 2004, at 14:53:26
Hi Jaynee,
I'm interested in this too. Here's an old post of mine. http://www.dr-bob.org/babble/20030828/msgs/255255.html
Whole thread on porphyria I think?
The link in my post doesn't work any more..new link below
http://www.nutritional-healing.com.au/content/articles-content.php?heading=PyroluriaI did ask a doc to test me as I respond well to all the supps, I also need carbs in my diet..and I don't take to fish oil well..but he said my urine would be pink..and it isn't?
Re fish oil: I tolerate a max of one cap and that took 3 months of acne, "gas" etc to get onto.
Tried in to increase to 2 caps a day recently..but acne etc ..so gave up. Probably won't take fish oil caps any more after I run out.
I don't really uinderstand this much..I had the impression that pyrroles (or kryptopyyroles) showed in urine, maybe faeces if one had porphyria?
Posted by tantalos on September 11, 2004, at 23:45:28
In reply to Re: diagnosed with pyroluria - need help! » tendency, posted by Larry Hoover on September 5, 2004, at 10:42:02
I too have recently been diagnosed with pyroluria, and though I have been told to take 100mg of zinc until the time where my lab results come in. I believe that was in the form of zinc gluconate. Does anyone know how that number would convert to say other forms like OptiZinc (zinc monomethionine) or Zinc Picolinate? Thanks.
And interestingly I find that I respond better to some pyridoxal 5' phosphate brands than others. I particularly like Douglas' Laboraties Pyridoxal 5' phosphate and since I typically need less than their 50mg capsule, I break open the capsule and use it that way.
For those of you who want to learn more on pyroluria going to http://www.alternativementalhealth.com/articles/pyroluria.htm as well as checking into other articles on that site, SafeHarbor. It's really a wonderful site.
-Tantalos> > >
> > > I think you should see a real doctor, and ensure that a diagnosis of porphyria is not valid.
> >
> > I'm about to start seeing a holistic osteopath who comes highly recommended in this area. I'll make sure to get his $.02 on the subject.
> > >
> > > In porphyria, it is possible to see a dramatic increase in urinary PBG (a pyrrole). Porphyria can manifest as psychiatric symptoms, and go undiagnosed for many years.
> > >
> > Porphyria?! Never heard of that..how would I go about getting tested for it? For that matter it may be a challenge to even find a doctor that's familar with it..
> >
> > Thanks for tips and articles. More food for thought.
>
> Food for thought. Exactly.
>
> See: http://www.porphyriafoundation.com/about_por/testing/testing01e.html
>
> Lar
This is the end of the thread.
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