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>
poster:Larry Hoover
thread:385742
URL: http://www.dr-bob.org/babble/alter/20040901/msgs/385965.html