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Pyroluria?

Discussion in 'General Treatment' started by ahmo, Mar 15, 2014.

  1. ahmo

    ahmo Senior Member

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    Last edited by a moderator: Mar 23, 2014
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  2. missionimpossible

    missionimpossible

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    @ahmo Thank you so much for replying.

    I took the questionnaire from the link you mentioned, and many symptoms are very similar. I did more reading on HPU and found this video .

    Dietritch Klinghardt, M.D.'s presentation on HPU / KPU / Pyroluria

    http://www.youtube.com/watch?feature=player_detailpage&v=-z3kRDYcvhA


    It seems this condition is more common than we think and is linked to autism, asd, schizophrenia, rett syndrome. He also talks about EMF's and their side effects. It also can cause gluthatione deficiency and metal toxicity.

    But my concern is for treatment he uses high doses of B6 and zinc.

    There is a supplement i found specially, for HPU called Depyrrol.

    Depyrrol-plus has the following ingredients:

    Pyridoxal-5-Phosphate (active vitamin B6) : 25 mg,
    Pyridoxine HC1 : 12, 2 mg,
    Zincorotate (15 mg elementary zinc), : 94,5 mg,
    Manganese-orotate (5 mg elementary Manganese) : 36,5 mg,
    Magnesiumorotate (15 mg elementary magnesium) : 228,76 mg,
    Maltrodextrine (this is safe for candida!!)
    Calciumstearaat q.s.

    so i am thinking to start at this low doses, and depending on my symptoms increase them. Do you think it is ok?

    ps: sorry i did not know how to post youtube link
    Last edited: Mar 15, 2014
  3. ahmo

    ahmo Senior Member

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    @missionimpossible, If you right-click on a vid, you'll get a url that should (!) post w/o posting the actual vid. I had to learn from someone telling me. I'll watch this vid tomorrow, as I haven't seen it yet. Thanks.

    When I started supplementing, I used high doses of zinc, selenium, molybdenum, less of mang. That's about a year and a half ago. I did this to also help eliminate metals. Later I dropped these doses. I also started TMG and the activated B's at that time. The amounts of mg and zinc in your preparation seem a bit low to me. Page 17 of the pdf I linked gives higher doses. I also notice in scrolling through that pdf, references to biotin. I added biotin as well as inositol. I've been really fascinated to find that in my current coffee enema detoxxing I always self-test for needing extra biotin afterwards, as well as extra minerals.

    After 5 days on my new supps, I had a real shift in my inner state. Suddenly my search to heal myself felt like an interesting challenge, instead of an unbearable burden. In retrospect, I attribute this to the TMG, which is a methyl donor. Correction: probably P5P, I think TMG came later. I can't be certain which element(s) cause this shift in my thinking, but it it was significant and has remained. Later I added low dose lithium, per Amy Yasko, as my genetics describe my overly emotional life. This was the last of the significant shifts I've gotten from supplementing particular minerals, or in this case, vit. Now my methylation is beginning to work better, I'm slowly increasing B12/folate. I also got a grounding sheet and mat for the emf's.


    Freddd found that when on the folate/B12 protocol, having B's in the range of 25mg/day, in 2 doses, helped keep down the insatiable need for potassium. I found this to be true, and lowering my previously high B's released some connective tissue holding, due to the lower sulfur.

    When I first began researching pyroluria, and treating only based on my symptoms, not unreliable testing, I found a close relationship to MTHFR. It seems to me that pyroluria, uncovered before genetic testing, covers things happening in at least MTHFR and CBS defects. OK, all for now. Best to you, ahmo
    Last edited: Mar 16, 2014
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  4. missionimpossible

    missionimpossible

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    @ahmo

    There is some problem with the pdf link you gave. plz post the link again. Thanks
  5. ahmo

    ahmo Senior Member

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    @missionimpossible, Yes, the ending of the address above needs to be included. Here it is again: http://www.klinghardtacademy.com/images/stories/powerpoints/hpu 2009.pdf

    This pdf is the material Klinghardt refers to in the video. I am so glad you posted this vid. I've been using the protocol, referring to Klinghardt, but seeing and listening to him has been so illuminating. I now see why I've been confusing Klinghardt and Kamsteeg: they've drawn from each other's work.

    The emphasis on detox, detox, detox, and EMF removal as key to healing is salutary. I also recognize that my understanding that genetic info has somehow superceded the significance of pyroluria is absolutely incorrect. In fact, in some ways Klinghardt's emphasis on pyroluria supercedes, or at least encompasses, Yasko's protocols. Here he labels Parkinson's, ALS, MS and other conditions as 'adult autism'. I'm very impressed, am now encouraged to add a few elements to my detox, including cilantro, which I'd been too afraid of. And his urging of parents to continue on through the initially terrible reactions kid's have when detoxxing is priceless. thanks so much for this.:thumbsup:
    Last edited: Mar 16, 2014
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  6. 123pdeme

    123pdeme

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    I've researched this quite a bit and I don't believe in Pyroluria, there are two studies you can refer too on pubmed, see below. You don't have to take my advice, I have done a degree in Nutritional Therapy and trust me if this was a real condition along with Histapenia and Histadelia I would be be following the advice. Sorry to rain on your parade but these conditions simply aren't taken seriously in the medical community and don't have any credibility, they're pseudo science.

    http://www.ncbi.nlm.nih.gov/pubmed/696910

    http://www.ncbi.nlm.nih.gov/pubmed/3520252

    http://sguforums.com/index.php?topic=9190.0

    http://www.sciencebasedmedicine.org/pyroluria-and-orthomolecular-psychiatry/

    http://jdc325.wordpress.com/2011/08/17/histadelia-a-doctor-writes/

    The conditions we suffer from are serious and ruin our quality of life, I wouldn't want anyone going on a wild goose chase wasting their time. Pyroluria is in my opinion complete nonsense. I hope I don't offend anyone here by saying that.
  7. ahmo

    ahmo Senior Member

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    @123pdeme You might not believe in pyroluria. I don't have to believe or not believe. Once I took a questionnaire to indicate whether this syndrome might be affecting me, and supplemented accordingly, my life changed. The multiple systems involved in this syndrome impacted me throughout my life.

    I've also done a fair amount of online research about pyroluria. I felt, prior to watching Klinghardt on vid, that pyroluria generally described what we'd now call genetic defects, particularly MTHFR and CBS. I was following Klinghardt's short-form protocol. Watching this vid, I see he has an over-arching concept of pyroluria that trumps my limited understanding.

    I read in your next-to-last link, the only one I've gone to,
    I'd used B6, along w/ B3 and B1 in high doses for some years to calm my nervous system. After learning about pyroluria, I switched to active B6, P5P. My headspace changed dramatically, by Day 5. A host of negative thoughts ceased. In that moment, 5 days into a handful of supps that were nearly what I'd been taking for years, the unbearable burden of continuing research to get me out of the hole of my illness shifted. From that moment on, it became an interesting challenge. This was not attitudinal, this was biochemical.

    One of the reasons I completed the pyroluria questionnaire after I read of it was the link it made between sun sensitivity and histamines. There was nothing else I'd seen that linked these 2 things which were having an overwhelming impact on me. From the onset of my ME/CFS I'd suffered from severe sun sensitivity. This was separate from my heat intolerance. When sun hit my skin, it was intolerable to me. Within 5 days of beginning the new supps, this was GONE. After 9 years.

    The conditions I suffered from have been serious and ruined my life. Supplementing for pyroluria gave me a new possibility. It cleared my mind enough to continue on to work w/ Freddd's Protocol and rejoin the land of the living.

    My GP was so impressed by the changes in me, that he reviewed all his patients with psych issues to see if there was a role. I was not a psych patient, but was overwhelmed by anxiety symptoms. And another GP in his practice was assigned to study pyroluria in depth.

    I hope you do not bring this limited view to your patients. I hope I don't offend you with that. ahmo
    Last edited: Mar 21, 2014
  8. 123pdeme

    123pdeme

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    Thanks for your reply. Firstly let me correct you, I'm not sure why you assume I have patients. I'm not a medical doctor. I have a degree in Nutritional Therapy, I do not treat anyone. I did this degree as it's an interest of mine.

    So let's discuss the possibilities here.

    1. There really is a condition called Pyroluria, (even though there's no evidence to substantiate this and it's based on outdated quackery from the Orthomolecular community from the 1970s).

    2. There isn't really a condition called Pyroluria, but the supplements you've taken have numerous effects in the human body, which are well studied and have a positive impact on anxiety conditions.

    I fully believe that you have made progress using the supplements you've tried in combating your anxiety. The reason for this is not because a condition called Pyroluria exists but because those supplements are known to have effects on the central nervous system. Also you believe that you are treating a condition which has a powerful effect in itself. I'm glad you feel well, however there's no literature or person of good standing that gives any credence to Pyroluria.

    My stance is that Pyroluria doesn't exist and I won't change that position unless you can provide studies to indicate otherwise. I'm not making any personal attack upon yourself and I know the full horror of suffering from anxiety, so I truly wish you well. We as people can still get along even if we have fundamental differences in our approach.

    I choose to work from evidence, that's my approach and I use studies to back that up, studies don't explain how something works just that it works or appears to function in a certain manner which can be replicated. It's the best approach that we know of and have currently.

    GPs utilise knowledge to ascertain whether you require specialist help or whether they can help directly, however they are at the end of the chain, they aren't involved in research, I would be interested to see the GPs research in to Pyroluria that you mention, although they can only go on the evidence from clinical research.
  9. ahmo

    ahmo Senior Member

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    @123pdeme I don't really care about your stance, I have zero interest in providing you further information. Treating this syndrome is working not only for me but many others. My reference to anxiety is only one of the symptoms this protocol relieved. The sun sensitivity is another. The connective tissue is another. Since you're not treating patients, it doesn't really matter what you believe or think or choose. Peace to you, ahmo
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  10. 123pdeme

    123pdeme

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    Long may it continue to work for you. I wish you well.
  11. Hip

    Hip Senior Member

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    @ahmo, you know that vitamin B6 is a standard treatment for sun sensitivity (aka: sun allergy, photosensitivity)?

    I am not sure if there is any relation between sun sensitivity and pyroluria.

    There nearest link I could find between pyroluria and sun sensitivity (but it turns out there is no link) is that pyroluria is associated with acute intermittent porphyria, and it says here that:
    But it also says that:
    So from my online searches, I could not find any link between sun sensitivity and pyroluria. Though perhaps you might be more successful at finding a link.

    Thus it might be that the benefit you found from vitamin B6 on your sun sensitivity is unrelated to pyroluria.

    Interestingly though, light exposure does cause the mauve factor to break down (ref: here).




    As for published studies and scientific evidence of whether pyroluria, which is the elevated levels of mauve factor (aka: hydroxyhemopyrroline-2-one, or HPL) in the blood, can produce symptoms of any sort seems to be thin on the ground.

    It says here that:

    Here is some more info I found on sun sensitivity. It seems that beta-carotene is one of the best supplements for sun sensitivity.
    Note that the main types of sun sensitivity are:
    Last edited: Mar 24, 2014
  12. ahmo

    ahmo Senior Member

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    @Hip, I no longer have sun sensitivity. The point was, I was taking large amounts B6, for years. I don't process B6, like those suffering w/ pyroluria symptoms/syndrome. Once I started p5p, the sun sensitivity was relieved, in days. I'm sure you, or someone else, can tell me that p5p is commonly needed by certain classes of people who can be labelled with some other SNP or syndrome. It's clearly the favored form in Freddd's Protocol. That does not invalidate Pyroluria as a syndrome that is worthwhile looking into for many suffering anxiety, as well as for other issues, surveyed in the questiionnaire I linked.

    I have no need to mount a defense of Dr. Klinghardt or pyroluria as a syndrome. Watch the vid, this is an impressive practitioner. His understandings and methods are working for many people, I see it all the time in other forums. I don't have enough energy or cognitive abilities to act as a defendant or promoter. I post things that have been successful for helping my recovery, and that of others with whom I'm familiar. As I said in my original post on this topic, I'd downplayed Klinghardt's emphasis on pyroluria as I made my way forward with my SNPs. However, hearing his whole method and process on the vid was eye-opening, showed to me my own limited thinking. Best to you, ahmo
    Last edited: Mar 24, 2014
  13. Hip

    Hip Senior Member

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    Pyroluria certainly exists as a condidtion. That is to say, there are people who have higher levels of the mauve factor in their urine, and thus by implication, in their blood.

    However, as to whether these higher levels of the mauve factor actually cause any symptoms, mental or physical, there appears to be little evidence.

    The fact that an individual with high levels of the mauve factor may feel better after taking vitamin B6 or P5P does not in itself prove that the mauve factor was the cause of their symptoms.


    Klinghardt unfortunately seems more interested in selling incredibly expensive DVD collections, rather than doing good scientific research. If he published some good scientific studies actually demonstrating the negative effects of the mauve factor on mental or physical health, then the scientific community might take notice. But he does not do this, he just sells DVDs of him talking about this and that. I have little time for such people that don't make the effort to do the required research. It's unethical.

    If Klinghardt believes that many people suffer needlessly from symptoms such as anxiety as a result of pyroluria, the ethical thing to do would prove this scientifically, as it is only once you have solid scientific proof that the medical community will listen. So he should perform the studies, and then as the word gets round, as a result of his scientific efforts, this would remedy the needless suffering he believes originates from pyroluria in millions of people.

    If Klinghardt believes pyroluria causes anxiety and other mental symptoms, the most unethical thing to do would be not to perform scientific studies to rigorously prove this. So why doesn't he perform these studies?
  14. ahmo

    ahmo Senior Member

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    @Hip I have no idea if Klinghardt talks about anxiety and pyroluria.He's mostly working w/ autism and lyme. Scientists do studies. He's a practitioner, treating patients. Most of his protocols are available as free pdfs, as is this and other vids.

    If I had waited for scientific proof of the protocols which have saved my life over these past 2 years, I would be dead now. Instead, I'm finally healing, continuously.

    Re pyroluria, Klinghardt takes great pains to talk about what's needed to get accurate testing. It isn't easy. So it is inherently unreliable. For me, I took the questionnaire, initially I didn't rate very high. When I retook it carefully, answering for issues I wasn't currently experiencing, I'm within the range. I started supplementing accordingly. things shifted. That's my experience.

    I don't know if anyone said this is a cause of the symptoms. It was a discovery used to go forward with suggested treatment. As I said, I don't have the brain power or cognitive skills to take on a defense of a protocol which is working for me. BTW, P5P is not the only element in the protocol. Zinc is essential in hundreds of reactions. Many of us have suffered from critically low levels, creating opportunity for toxic metals to replace it.

    What stood out most for me on the questionnaire was not anxiety, nor sun sensitivity, nor histamines.It was the connective tissue issues which plagued me throughout my life. These clearly also have a CBS connection. They have resolved. That's my experience. over and out, ahmo
    Last edited: Mar 25, 2014
  15. PeterPositive

    PeterPositive Senior Member

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    I think this does provide interesting correlations between HPL levels and symptoms:
    http://www.ncbi.nlm.nih.gov/pubmed/18383989
  16. Hip

    Hip Senior Member

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    Interesting. The authors say that "treatment with nutrients--particularly vitamin B6 and zinc--reduces urinary excretion of HPL and improves diverse neurobehavioral symptoms in subjects with elevated urinary HPL." I'd like to know which study or studies that statement is based on.
    PeterPositive likes this.
  17. Violeta

    Violeta Senior Member

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    @123pdeme, where did you get your "degree" in Nutritional Therapy?

    And what health issues have led you to Phoenix Rising?

    I'm curious as to what your school taught you about ME/CFS, as that was/is not taken seriously by the medical community.
    Last edited: Jun 6, 2014
  18. xks201

    xks201 Senior Member

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    The mauve factor is not made up. The fact it binds free zinc and B6 is not made up. Just because your doctor doesn't believe in it doesn't mean it isn't real. For example, many states don't believe in testing for biotinitase deficiency in newborns or simply were not told to. That doesn't mean it isn't a smart thing to do. The medical community isn't even fond of running organic acid tests to see where potentially the metabolic hiccup lies. To say, oh the medical community doesn't believe in this, is ridiculous because the medical community is 30 years behind the current technological developments. For example, they do not check your dna to determine what liver enzyme activities you have to best determine what drug would work for you. If it doesn't work right they just call you crazy. And I know of plenty of doctors that couldn't cure a chronic health problem to save their own life.

    For someone potentially with CFS on a CFS forum to use the defense that the medical community doesn't believe it so it must not be true is probably the highest form of hypocrisy I could imagine seeing on this forum. Lol

    Here they give you a link to a study and all your infinite skepticism responds is that you want more studies. If only everyone had millions of dollars to run multiple official studies on everything on the face of the earth. Pyroluria has been treated in patients for a long time. Histadelia and histapenia I would imagine are very possible conditions too. Histamine status is closely tied to methylation states as well. Maybe you don't believe in methylation either. The idea that someone could be over producing histamine in response to something isn't that crazy. Maybe your nutrition school never taught you the interrelationship of histamine metabolism to everything else.
    Last edited: Jun 10, 2014
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  19. PeterPositive

    PeterPositive Senior Member

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    I am was looking on the healthdiagnostic.nl website for the pyroluria urine test and they have two.

    - Kryptopyrrole
    - HPL (+kryptopyrrole)

    The former is around 45€ and the 2nd is twice as much. I have written three times to the website and so far no one has been able to explain the difference between the two :rolleyes:

    Do you have any ideas? The 2nd name suggests that they are considering two parameters, but isn't HPL and kryptopyrrole the same thing essentially? (= hydroxyhemopyrrolin-2-one)

    Any idea?
  20. Hip

    Hip Senior Member

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    As stated, the question here is not whether mauve factor exists, but rather whether it actually causes any symptoms, mental or physical. I have not seen any published evidence that mauve factor does cause symptoms. Neither have I seen any informal online polls, etc, in which people with high urinary levels of the mauve factor improved symptomatically by taking supplements that reduce mauve factor levels.

    If you know of any such evidence, I would would be more than happy to examine it.

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