ajw4790 Posted September 25, 2009 Report Share Posted September 25, 2009 Hi,I was looking up histamine sensitivity and ran across this website on HPU. I did not find much else online in a quick search other than this site. So, I am still trying to find info on it... Anyone heard of it or have thoughts???http://www.hputest.nl/ewhat.htm"Symptoms of porphyria such as abdominal discomfort (belly pains, constipation, nausea), leg cramps, weakness of the muscles in the arm, anxiety and agitation, skin complaints that increase during exposure to the sun are found in HPU to. Other symptoms like a slightly rapid heartbeat and convulsions, are however, found much less frequent in HPU-patients.Studying thousands of patients with krytopyrroluria, porphyria and HPU we found the following structure in complaints.Symptoms caused by a decrease of the haem productionIn the case of HPU less haem is produced than normally. Only in severe cases this causes complaints. Haem is the building block of haemoglobin, myoglobulin and cytochrome C. So in these severe cases anaemia, tiredness, muscular weakness and functional liver problems are present. In the haem formed in most of the cases more zinc is linked than normal. So part of the haemoglobin is zinc-haemoglobin.Symptoms caused by deficiencies of Pyridoxal-5-phosphate and zincMuch more complaints are however caused by the deficiencies of pyridoxal-5-phosphate, zinc and manganese. To these complaints belong also muscle weakness, joint complaints (hypermobility), problems carbohydrate intolerance, allergy due by a bad protein digestion, problems around menstrual cycle, pregnancy and childbirth (miscarriage) (instability of the pelvis), hypoglycaemia or diabetes.Symptoms caused by down regulationOther symptoms are caused by down regulation. These symptoms are tiredness, hyperactivity/drive, thyroid dysfunction, headache/migraine, gluten sensitivity, low blood pressure, infertility, overweight, heart and vascular disease, pituitary hypofunction and so on. " Quote Link to comment Share on other sites More sharing options...
green Posted September 25, 2009 Report Share Posted September 25, 2009 I found a publication abstract that says there is no scientific basis for HPU:"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."Hemopyrrollactamuria (HPU); from spots to pseudo-diseaseI am not familiar with the "Nederlands tijdschrift voor geneeskunde" journal and how well respected it is (I bet an easy way to check exists on pubmed.... like a cross-reference index that tells you how often the journal is cited by articles in other journals, if anyone knows how to do that, please let me know). Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 25, 2009 Report Share Posted September 25, 2009 All I know, is about 6-7 years ago, I wondered if I might have porphyria. So, I tested myself. I put some of my urine in a cup, and put it outside in the sunlight and checked on it all day. People with porphyria's urine will turn purple/blue. Mine did not change. Quote Link to comment Share on other sites More sharing options...
goldicedance Posted September 25, 2009 Report Share Posted September 25, 2009 My astute physician about 8 years ago called to say that this crossed her mind. I was tested, but negative.Lois Quote Link to comment Share on other sites More sharing options...
goldicedance Posted September 26, 2009 Report Share Posted September 26, 2009 Childhood symptoms interesting: I could never climb a rope or use those rings. Out of fright!!!!! And, weakness! lol Quote Link to comment Share on other sites More sharing options...
ajw4790 Posted September 26, 2009 Author Report Share Posted September 26, 2009 Thanks for all your replies! I had wondered how reputable it was when I couldn't find much on it... Also, when I couldn't quite figure out what HPU stood for... But, I have to say, whatever they are describing is one of the most accurate descriptions of "me" that I have seen when looking at descriptions of diagnoses!It continues to make me curious! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 26, 2009 Report Share Posted September 26, 2009 porphyria is an extreme illness in both its rarity and its symptom presentation. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.