Guest guest Posted October 7, 2008 Report Share Posted October 7, 2008 I havent seen any valid studies or articles " linking " this to Lyme. I do know that any illness can deplete many nutrients, and also derange metabolism. I also know that you can have more than one thing coincidentally ( called comorbidants). So you may indeed still have Lyme and the pyroluria. I should really mention that the notion of this disorder is very suspect. Only some orthomolecular " practitioners even think it exists and the tests are all very unreliable--indeed many with that diagnosis when tested again by another practitioner came up negative! and many with levels of pyrroles in blood or urine really dont have a " condition " at all. Responding to zinc etc doesnt " prove " this illness. Its supposedly genetic and there are supposedly too much of one of the pyrrholes being produced ( kryptopyrrhole)?whihc bind and block some nutrients like zinc. It is thought the reason for the high kryptopyrrhole is faulty hemoglobin synthesis and yet many who are diagnosed with htis never have abnormal hgb synthesis on tests!! Obviously there are hundreds of other reasons to be deficient in the same nutrients! Like poor intake, poor absorption, binding substances etc etc even if urine excretion has high pyrrholes and porphyrins a person may simply have porhpyria, so many are misdx with this illness and so far all of the psych dx ( schizophrenia, add, anxiety etc) cant be correlated to this " condition " as some have claimed all in all, Id be careful about accepting this dx and if you have Lyme sx please seek out an experienced licensed health profesional that " knows " Lyme!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Hello I've just had myself and my son tested for pyroluria in lab bio paris. thomas came back at slightly pink at positive 1+ and I came back at positive at 2+. Does anybody have any experience with this, or could you direct me to where I can find more info as I know that this problem is greater than just supplementing with b6 & zinc alone. thanks in advnace for any help, mary c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2010 Report Share Posted August 25, 2010 Hello, I took my son to the Pfeiffer Treatment Center and this is what they diagnosed my son with clinically. I do believe they do a lot of work with pyroluria. I believe they are located in Illinois but they have small satellite offices thoughout the US.  May From: tgam_tgam <family.crombie@...> Subject: [ ] pyroluria Date: Wednesday, August 25, 2010, 3:01 AM  Hello I've just had myself and my son tested for pyroluria in lab bio paris. thomas came back at slightly pink at positive 1+ and I came back at positive at 2+. Does anybody have any experience with this, or could you direct me to where I can find more info as I know that this problem is greater than just supplementing with b6 & zinc alone. thanks in advnace for any help, mary c Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 > > Hi, > > A couple of weeks ago I had a melt down. Very severe. I felt my head would explode. I took some candex and was relieved in a short time. My son and I tested positive for pyroluria and I wonder if that also had something to do with it. I was off the charts high in copper. I'm still taking Candex and added oregano oil. > > Has anyone treated pyroluria with Bee's protocol? > > I feel unsure what to do. Should I add some zinc, b6, manganese, maybe a multi mineral? > > My melt downs might cost me relationships that I treasure. Hope I don't have one again. > +++Hi Cassandra, 1) You should never take candex or any other kind of cleanse since it will cause reactions like you had, since so many toxins are being dumping into your system at one time, which increases detoxifying reactions and symptoms. 2) Oil of oregano also increases detox reactions, so that's why I don't recommend taking it internally. Just allow the diet and supplements do their job the longer, slower way. 3) Zinc and manganese are only needed in trace amounts by your body, so you will get plenty in the foods and ocean sea salt on this program (ensure you take 1.5 teaspoons per day). 4) B6 is in the B Complex I recommend, and all B vitamins must be taken together and balanced, otherwise taking more of one depletes your body of the others. 5) Pyroluria involves " hypothetical " excessive levels of pyrroles in the body resulting from improper hemoglobin (blood) synthesis. Carl Pfeiffer believed that pyroluria is a form of schizophrenic porphyria, similar to acute intermittent porphyria where both pyrroles and porphyrins are excreted in the human urine to an excessive degree. Pfeiffer's methods have not been rigorously tested, and pyrroles are not considered to be related to mental illness like schizophrenia. Studies have either failed to detect hemopyrrole and kryptopyrrole in the urine of normal controls and schizophrenics, or found no correlation between these chemicals and mental illness. Few, if any, medical experts regard the condition as genuine, and few or no articles on pyroluria are found in modern medical literature; the approach is described as " snake oil " by pediatrician and author n Haber. All you need to do is this program in order to get healthy and to have less emotional upsets. In future I won't be able to advise you unless you are completely on this program, and not doing anything else like candex, zinc, etc. which causes unnecessary problems and imbalances. All the best, Bee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2011 Report Share Posted March 22, 2011 Hi Cassandra, yes my daughter is recovering from pyroluria, together with many severe nutritional deficiencies, autism, life threatening asthma, severe anaphylaxis causing allergies, hyperactivity, Pcb poisoning, etc etc. We tried every 'biomedical treatment' available it feels like and a myriad form of suplementation including everything you are doing. All of these experiences taught us most of the lessons that you get with Bee's program. (We learnt these lessons slowly and very painfully, that is why I am very passionate about it!) Nothing beats building your body up with proper nutrition and very few people know more about that subject than Bee. She is a rare revolutionary whose genius lies in her independence from the medical and pharmacutical industry and her valient trail blazing research that keeps her constantly inproving and breaking new (and sometimes contraversial ground!!) Hope this helps and don't hesitate to ask if you need some more support with those healing reactions! I am a self proclaimed expert!! All the best > > Hi, > > A couple of weeks ago I had a melt down. Very severe. I felt my head would explode. I took some candex and was relieved in a short time. My son and I tested positive for pyroluria and I wonder if that also had something to do with it. I was off the charts high in copper. I'm still taking Candex and added oregano oil. > > Has anyone treated pyroluria with Bee's protocol? > > I feel unsure what to do. Should I add some zinc, b6, manganese, maybe a multi mineral? > > My melt downs might cost me relationships that I treasure. Hope I don't have one again. > > Cassandra > Quote Link to comment Share on other sites More sharing options...
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