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!
