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Pyroluria?

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

  1. xks201

    xks201 Senior Member

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    You have not looked hard enough. Look at literature from doctors that practice orthomolecular medicine. A study was just posted above showing zinc and B6 reduced symptoms and mauve factor levels. Tons of case reports of people taking it and getting better. Apparently you believe in mauve factor but not its function. It literally steals B6 and zinc from the body. Deficiency symptoms must present themselves.
     
    Last edited: Jun 10, 2014
    ahmo likes this.
  2. PeterPositive

    PeterPositive Senior Member

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    I guess the whole problem boils down to having good evidence that the increased level of mauvre factor does indeed steal zinc and B6 in conspicuous amounts. If that's the case then it's pretty clear that people with this problem will need support on that front, even without symptoms, imho.

    The german doc (Klinghardt) that is mentioned in the first page also talks about supra-physiological amounts of zinc, B6, manganese and biotin being excreted in the urines. Unfortunately there's no reference to studies or other resources so I don't know where that comes from. I imagine it's from his own practice with patients.
     
  3. Hip

    Hip Senior Member

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    You are referring to this: Discerning the Mauve Factor, Part 1. That is a review, not a primary study (ie. no new evidence, but a review of previous studies).

    I found the full paper here (published 2008):
    Discerning The Mauve Factor, Part 1
    Discerning The Mauve Factor, Part 2

    There is also an easy-to-digest presentation document by the same authors HERE.

    These authors are saying roughly what I am saying: to quote their paper (the part 2 paper):
    That "period of initial activity" was back in the 1960s and 1970s, and very little has been done since then.

    Why aren't these doctors who practice orthomolecular medicine publishing further research on the mauve factor, if they believe it may be the cause of various mental symptoms? Making claims is easy; providing solid evidence is harder work. They need to perform the research. If orthomolecular practitioners believe that the mauve factor is a major cause of various mental health conditions (conditions like anxiety disorder, which can cause considerable suffering), then it is irresponsible and even unethical not to do the research, publish and make it generally known and available.


    And regarding the authors' statement that vitamin B6 and zinc reduced symptoms and mauve factor levels: in the part 1 paper it says that:
    Right, so the data to back up Pfeiffer’s claims that vitamin B6 and zinc reduced symptoms and mauve factor levels are simply not available. This is fairly shoddy science if you do not publish your numerical data for others to examine.

    I am not saying that people should not try taking vitamin B6 and zinc to see if it helps. It's always good to experiment with medication protocols. But I have to point out that the evidence to back up the claims that the mauve factor causes various symptoms is scant. Whether the mauve factor does cause symptoms or not is another question; I am just saying that the evidence base is very weak. Further studies are needed.
     
    Last edited: Jun 10, 2014
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  4. PeterPositive

    PeterPositive Senior Member

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    The fact that mauve factor cause excessive dumping of zinc and B6 in the urine shouldn't be controversial, since this can be tested. Am I wrong?

    If that's the case it doesn't seem a long stretch that those deficiencies are very likely to cause symptoms sooner or later. So maybe the problem is correlating specific symptoms such as schizophrenia?
     
  5. Kim C

    Kim C

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    Hello all! Just thought I would chime in here...
    I do not know if pyroluria exists, or if I personally have mauve factor but I can tell you this much as fact:
    I began my gradual journey into severe illness at the onset of menopause in 2007, although I have had a lifelong struggle with metabolic problems, gut problems, and mild depression from the time I was a toddler. I am compound hetero MTHFR.

    Using the questionnaire which @ahmo mentioned, I have many of the symptoms listed, although I admit these symptoms could be related to many things. However...

    1. For at least the last three years I have had, pretty consistently, an unusual odor to my urine. Sometimes it was also foamy and dark, however all my urinalysis testing (numerous) revealed nothing. No infection, no glucose, no protein... Nothing. At least one test was run when urine was foamy and dark. I have also done three consecutive 24 hour urine tests looking at histamine levels which were all in the low normal range.

    2. I have undergone two Nutreval tests since July of last year, 6 mos. apart. The first test revealed low levels of all b vitamins (red zone) except b6 and b3 (both barely borderline). I had supplemented non- active b vitamins (except b12 was methyl) for about 6 mos. prior to this test, but had stopped them in February. I had, however, been eating huge amounts of turkey in a desperate attempt to calm my horrific anxiety (tryptophan) and keep some weight on, and poultry is known as a good source of both these nutrients. My zinc was also only in borderline range in spite of supplementation of 22 mg. of picolinate during the test. Side note, homocysteine was 10.

    3. I began supplementing b6 (25 mg p5p), methylfolate (400 mcg) and methyl b12 (1000 mcg) in February. The entire time between tests I continued with the zinc at 22 mg, and began eating more animal protein as directed by my doc. (She had wanted me to start folate and other bs right away after the first test but I could not tolerate them but kept trying and finally began a few in February) The latest Nutreval in March showed some improvements in a few areas, but also backsliding in others, and interestingly, my zinc and b6 levels did not budge even though I was supplementing both during the test. Additionally, my copper levels rose to slightly above normal since I had been eating tons of extra veggies to try to get my folate up for the six months or so between tests.

    4. On a regular blood draw I was monitored for copper and zinc ratio in May. I am center of the range for both at a 1 to 1 ratio. I am told by my doc this should be more like 10 or 15 to 1 in favor of zinc.

    In April I added Multi TD, TMG, and quickly worked up to between 5 and 6 mg methylfolate (total) and 1-2 mg methyl b12, and increased zinc to 45 mg total and b6/p5p 50 mg total, with some improvements in energy and anxiety but no gut improvement. So in mid May I asked doc if she thought I still was not getting enough zinc to get sufficient stomach acid going. This is what prompted the ratio test for copper/ zinc and she felt I had room to move up on the zinc but carefully. We agreed to also up the p5p slightly. Side note: homocysteine now 6.6.

    My doc is familiar with klinghardt and feels some of his work has some merit, but was not familiar with his treatment protocol for KPU. In her old practice there had been a klinghardt "desiple" from Seattle, (her words) who visited and spoke regularly.

    So now I am at 69 mg zinc (as carnosine, picolinate, glycinate), 12.5 b6, 52.5 p5p and doc will monitor in 6 weeks. My anxiety is steadily better as is gastritis, and my gut is getting a little quieter and heading toward normal, although I have a long way to go. Today I added 500 mg n acetyl glucosamine and got a few hives, but will try to continue this as knuckle joint pain is slightly less.

    I will keep you all posted as things progress in the hopes of helping someone and/or shedding some light on things.
    Hugs to all!
     
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  6. Kim C

    Kim C

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    Hello all!
    So... Here we are about 6 weeks later from my initial testing after my increase in zinc. Note that I had to reduce my dose to 62 total milligrams from the previously stated 69, as I was getting some leg cramps at the higher dose and did not feel my gut could tolerate an increase in magnesium at this point.

    New test results showed a slight increase in copper by 5 points to 101 but zinc increased to 116 from the previous 95. Doc is pleased that at least the zinc is higher now, but does not want to increase my dose at this time. She did say it would be ok to swap out more zinc carnosine for the glycinate, so I am doing that every other day now since it seems to be helping my gut. We are keeping p5p/b6 dose at the 65 mg. for now.

    I am still having a bumpy ride but would say that overall I am still slowly improving. Gut is quieter. Stools a bit better. (Sorry about tmi) Gastritis is better but still feels like I have an ulcer that hopefully is healing. Ears still ringing like a bugger at night but some nights I sleep through the night. Insomnia still common but I am having a lot less anxiety. Hot flashes still coming and going which are directly related to how my gut is doing.

    BTW, Klinghardt suggested that people with pyroluria/KPU also have high nitric oxide, and I had forgotten that my doc had tested that by way of a certain test where they take readings of blood flow after your arm has been squeezed by a BP cuff for 15 minutes and then they let it go and take the reading. Mine supposedly showed a very high reading (good from a cardiovascular standpoint). It was so high in fact that everyone in the office was oooing and ahhing!

    I have my next Nutreval around the early part of September. Will report back if anyone is interested!
    Best to all, and hoping this info helps someone! Kim :)
     
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  7. PeterPositive

    PeterPositive Senior Member

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    @Kim C thanks!
    I find zinc-carnosine to be easy on my stomach compared to other forms, and picolinate to be the worst... it hurts :(

    cheers
     
  8. Kim C

    Kim C

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    Hello all!
    I bet you think I had forgotten about you! Naaa... Just still trying to worm out more answers, which has in some ways left me with more questions. I do have a few interesting things to report tho.

    I did my Nutreval at beginning of September and results came back around the end of the month. A couple things were greatly improved, such as vit. A, c, e all in the green and glutathione at the top of the range! Thank you Vital Whey protein! I feel strongly this was instrumental in recovering from severe glutathione deficiency on my last tests 6 mos. ago.

    But some things were actually worse. My folate, b6,3,2, and 1 now all in the red range :(. B12 was borderline. My last test was better than that so this was quite surprising considering I was taking a large dose of folate and b12 (about 4-5 mg each) plus dutifully taking my MultiTd as prescribed. My zinc had not budged! At 62 mg I was still barely borderline. And I had been taking 65 mg of b6 too, with most of it as p5p. I asked my doc and she was as puzzled as I was. Not sure if she consulted with Genova on this test... I tend to think not. The only real thing she offered was a script for VSL 3 ( that's ok cuz now my probiotic is covered by insurance) and she ok'd my taking Red Mineral Algae for a calcium supp and the addition of New Chapter food based vitamins.

    Meanwhile, going into the fall season I could feel changes taking place in my body. My gut was quieter but D was bad again.Right after my blood draw I upped my zinc to 77 since I was still having horrible histamine reactions and craving raw meat, and my b6 to 105, just to see if I felt any better. It did seem to help a bit.

    A few days after my dr appt. I decided to contact the nutritionist I had seen last year who initially thought I had pyroluria. She had originally prescribed keeping my supplemental zinc dose (22 mg at that time), plenty of animal protein including meat in my diet, plus TMG with each protein meal and a small dose of folate (400 mcg). Instead I followed doctors orders and took a small dose of TMG and raised my folate and b12 dose but kept the diet changes and took supplemental zinc. Obviously this plan for me is lacking.

    On September 29 my nutritionist explained that taking the large dose of folate put too much stress on the folate methylation pathway which makes sense since this is my "broken" pathway (compound hetero) and was pulling down my other nutrients (my take - kinda like supply and demand). I seem to recall a post way back when by Rich Van K where he talked about overdriving the system. Interestingly my hubby's Nutreval showed something kind of similar. Hmmm. So she reduced my folate dose to no more than what is in the MultiTD (800 mcg and she thinks that might even be too much), upped my TMG to three times daily 500 mg ea, and increased zinc to @100 mg and b6 to around 200 mg as about half regular b6 and half p5p. She does suspect pyroluria since I have had symptoms since early childhood, and now three Nutreval tests which all show low zinc and b6 even when supplemented. She used the oral zinc challenge (Zinc Tally by Metagenics) and it tasted only like water even after 24 mg of zinc earlier that morning. Truthfully I am hoping it is just a stress response which may correct itself over time.

    So here we are two weeks out and I do feel better. I actually felt better almost immediately after reducing the folate dosage. Stools still not great but feel like I am making some progress. Sorry, TMI! I'm sleeping better although still not great. Ears still ringing like a bugger, LOL! Gut is quieter. Mood is mostly good. Anxiety nearly nonexistent. Energy could be better though. I have temporarily stopped yoga until the time changes off daylight savings so I am not pushing myself in the morning to get there which I realize now was actually causing me more stress. Still no real appetite most days but am eating very well and healthy. Am able to eat a bit more normally now, but still going easy on histamine producing foods. That said, I made some delicious yogurt with the VSL 3 and am able to eat that in small amounts. This is a big improvement for me, as yogurt before would send me running you know where! Skin looks better most days but the nagging little sores still get red and angry in spite of slowly healing. Gastritis is much better but still healing. Most of my numbness is gone most of the time, as are the tingling sensations less severe. I do get tired at the end of the day though.

    Today I took an oral challenge test for zinc on my own (I used zinc challenge by designs for life) and I could at least taste a little something after the same 24 mg of zinc plus a piece of meat for breakfast. Hopefully I am making some progress.

    I have added DIM to my bucket of vitamins (ugh) and am now taking Red Mineral Algae three times daily, which supposedly includes other trace minerals including zinc in addition to calcium and reportedly has antiviral effects. So hopefully this sort of food based supplement perhaps will be more available to my sick gut. I am now using flax oil and alfalfa to see if my hormones (which are also out of whack as I am post menopausal) will come back in line. Trying to eat more phytoestrogens. I realize the jury is out on that approach, however am going by what my horses seem to know to do to get themselves in better balance. They are so smart... But they are, after all, horses not humans! LOL! Will take my chances.

    I see my regular doc for a physical at end of this month. Will ask her to check copper and zinc level since I am so heavily supplemented, per my other doc. In other words, I will be closely monitored. Then back to nutritionist for some tweaking after that.

    Gosh, I hope this helps someone.... Truly! Will keep you all posted! I hope all of you are doing well!
    Hugs! Kim C :)
     
    Last edited: Oct 16, 2014
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  9. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    I want to give an initial, anecdotal report.

    I scored high (20 out of 30 symptoms) on a pyroluria questionnaire. Many symptoms but most notable are a "wired" insomnia (can't get to deep sleep or dream sleep), moderately debilitating fearfulness & OCD, occasional mild vocals repetitions (tics) and sensitivity to sunlight.

    Desperate for sleep... I took 25mg of Source Naturals P-5-P sublingual a couple nights ago and my wired insomnia turned into a pleasant, relaxed sleepiness within minutes. It was fairly dramatic and remarkable change!

    I took another P5P lozenge this morning and I feel relaxed and even slightly euphoric. It seems to boost serotonin for me.

    The immediacy of the effects seems that P-5-P fixes a vitamin deficiency I have.

    Getting a test for Pyroluria.
     
    Last edited: Oct 27, 2014
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  10. ahmo

    ahmo Senior Member

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    @Sherpa glad to hear your excellent results! Even quicker than my response:thumbsup: Don't forget the zinc, selenium, manganese.
     
  11. Kim C

    Kim C

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    @Sherpa, will you let us all know what test you end up doing for pyroluria? Would be so helpful.

    I am doing MUCH better than I was since reducing my methylfolate dosage (now down to only 400 mcg) and increasing my zinc and b6. Now on 100-120 mg zinc, mostly as glycinate and eating a good amount of meat. On about 200 mg b6 with half p5p and half pyridoxine hcl. I see nutritionist in a few days after blood results come in from oct. 25. Zinc challenge tests still says I am low though. :(

    I came across something interesting while researching the rda for folate in my horses. Found quite a long dissertation from 2001 by equine nutritionist Amy Burke which addresses possible MTHFR in horses, along with a reference that folic acid interferes with zinc in some way. Also that folic acid can block natural folate uptake, which certainly explains a lot of health issues domestic horses have, since virtually ALL of the horse feeds are fortified with it. Turns out horses eating their natural grass diet really do not need any. In some cases she found that folic acid actually made things worse in terms of normal pregnancies, especially when combined with anti-folate drugs. Now I am wondering if methylfolate also has some impact on zinc. I do feel better on the small dose as compared to the mega dose I had been taking. Perhaps those with suspected pyroluria do better this way? I cannot say for sure yet, but hope I am getting closer to the answer!
    Best to all !
     
  12. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    KimC

    Wow you really need your Zinc. Good you found that out. I am going to try and test before ramping up on dosing, although the P-5-P is really.. really helping.

    I am doing the test at PyroluriaTesting.com - it's $80. You have to collect urine when stressed and off vitamins, freeze it and send in the sample frozen. Going off vitamins and will test next week!
     
    Last edited: Oct 30, 2014
  13. Kim C

    Kim C

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    Wow! Thanks for this @Sherpa! So glad the P5P is helping you! I got a similar calming effect when I first started the larger dose. I did test low (Nutreval) even when well supplemented for both b6 and zinc.

    I will let my doctor know about this in case she wants to look more closely, just for her own satisfaction. She is not especially comfortable with my high doses of these nutrients, but she understood my wanting to try this since I was stuck in my healing process, and supports my decision provided I am closely monitored. I would not attempt this without monitoring at all levels, that is for sure! These are scary high doses. I have two docs and a nutritionist all watching me, LOL!

    Yesterday I decided to stop the additional pyridoxine to see what would happen. I have had significant neuropathy right along, which has flare ups with worsening periodically even before I started with the supplements but I have been experiencing a bit of a flare so wanted to try to determine if it is the pyridoxine. Instead I have added a food based multi with a little b6 in it by New Chapter (Tiny Tablets). My gut is bad.... No two ways about it. Eating in General is a struggle in spite of a very clean diet. But I am now finally seeing some improvements, thankfully! Slow and steady wins the race!
    :)
     
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  14. ahmo

    ahmo Senior Member

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  15. Kim C

    Kim C

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    Thanks for these links @ahmo. Yes, I am aware, and although I have not shown any autoimmune issues whatsoever, I do show sensitivity to gluten among other foods. Of course, these foods were eliminated long ago and for well over a year. In spite of this, however, I could not make any real progress until I began increasing my dosages of zinc. Interestingly, one of my sensitivities was whey, yet when I added it back in everything in my body improved including my gut. Gums healed and stopped bleeding, skin looked better and I felt better.

    My personal take on food sensitivity is that unless you actually have an allergy to a food, then all foods should be ok in moderation, provided the gut is intact. Sadly for most of us, this is not the case for a myriad of reasons not limited to methylation defects. The impact of years and years of nutrient deficiencies takes its toll and now we are mostly mopping up the collateral damage.

    I am convinced that if I can ever get my gut completely healed or nearly so then I will be able to eat normally. Even now I am far less sensitive than I was 6 mos ago. Lately it seems like stressors are more of an issue than food, although some foods are still irritating. That said, the elimination of foods only creates more nutrient deficiencies in the long term so you never are able to get out of trouble. It ends up being a vicious cycle. My goal is to fix this. I may not get there but I will keep trying!
     
  16. Violeta

    Violeta Senior Member

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    Kim C, that's very interesting about the whey, what type of whey do you use? Do you eat any other dairy products?

    And do you have to limit high copper foods?
     
  17. PeterPositive

    PeterPositive Senior Member

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    Are you sure about the stress part?
    It is expected to have high kryptopyrroles/HPL under stress, so how would you know if it's just due to stress or a metabolic issue?

    I did the test during a non stressful period and it returned elevated. Even with that result I am not fully convinced that the pyroluria is caused by a metabolic disfunction. I have lots of gut issues, leaky gut and blastocystis h. infection... this is usually enough to cause a moderately elevated HPL.

    cheers
     
  18. Kim C

    Kim C

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    Hi @Violeta,
    I am successfully using Vital Whey Natural, and have since about May of this year. I started slowly with small doses and it took a few jump starts before my body seemed to like it, but as I recall it only took about 2 weeks to get it going well, at which point the whey became very soothing and would actually quiet my gut when it was angry. I credit this product with getting my glutathione back up to normal, as nothing else was doing this. Trying to get hubby to use it now too for this reason, but he is not consistent with it.

    I started with Immune Tree colostrum last November, which also gave me quite a bit of relief. I currently am using this again and it gives me a good bit of relief for my gastritis, along with dgl and apples. None of these helped firm my stools though. They did not make it worse but no huge improvement either. The zinc seems to be having a good effect for this problem at the moment. Yeah!

    I am now also able to eat yogurt and kefir. Two years ago I could not even breathe yogurt fumes, lol! I am making my own yogurt too with VSL 3 probiotic and 1/2 cup of Fage yogurt. Delicious! Today, for the first time in over a year, hubby and I went out to dinner for oysters and steak! This is a miracle for me! I cheated and had a little ice cream too with unfortunately crappy chocolate sauce. This did get my GERD going but gut is quiet in spite of this. Hard to not over do it after not having been able to go out for so long. Boy, am I grateful for days like this!

    At the moment I am not limiting high copper foods, although with colder weather setting in my greens consumption has probably dropped a little. Still though, yesterday I had some black beans. I am eating more of my veggies cooked rather than raw, but still include romaine or green leaf in my smoothies and occasionally dandelion greens. Not exactly high copper foods but higher than zinc. Since I don't supplement copper at the moment I want to be sure I get enough. Waiting for test results. It took me a while to get my zinc above my copper on any test, but it is there now. :)
     
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  19. Sherpa

    Sherpa Ex-workaholic & adrenaline junkie

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    From the specimen collection instructions:

    "DO not collect the first morning urine specimen. A random urine specimen is needed. If you are non-symptomatic at the moment, you may want to wait until later in the day when you are under stress to collect your specimen. Stress feels stronger to the patient with pyroluria because the higher the stress you are feeling, the more B6 and Zinc you lose."
     

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