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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. P

    Ceruloplasmin and free copper

    I recently self-tested on the relatively low end of the lab range for ceruloplasmin, with the consequence that my mid-range serum copper calculates out to a relatively high free copper percentage (about 30). I cannot imagine based on the descriptions I have Wilson's disease, which along with a...
  2. P

    Dr. Lawrence Wilson

    As to "yin" disease, if you read the full webpage, I doubt you will come away thinking it has anything to do with Chinese medicine. Read the part about seductive women, for example, which I won't copy here for fear of offense. Or his psychological analysis of "yin" people. Or his discussion...
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    Dr. Lawrence Wilson

    They also believe in meridians but what evidence is there for that? I may be biased from personal experience, I spent lots of time and money on acupuncture and other Chinese medicine when I was in a certain phase and none of it did anything. Dr. Wilson's writings on sex and politics and other...
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    Dr. Lawrence Wilson

    http://drlwilson.com/read articles.htm Well, he certainly is a prolific writer, including many topics far afield from medicine some of which seem very controversial. From brief research, some people swear by him, others denounce him as a dangerous lunatic. The cornerstone of his practice, and...
  5. P

    B complex with no or low folic acid or methylfolate?

    B minus has 180 mg. of niacin. That seems awfully high given the other ingredients.
  6. P

    B complex with no or low folic acid or methylfolate?

    I am looking for a modest dose B complex (preferably active forms) but with no folic acid OR methylfolate (or alternatively just a low amount of methylfolate) as I am pretty confident I get plenty of folate from food and don't want excess. Surprisingly, I can't find any products out there with...
  7. P

    Requesting help homozygous MTHFR A1298C, hetero VDR/MTR/MTRR

    I thought I remember reading that with MTHFR issues folic acid tends to measure high because the body isn't good at converting it?
  8. P

    Requesting help homozygous MTHFR A1298C, hetero VDR/MTR/MTRR

    Bringing this back up as I have been researching a1298c myself, being homozygous. There sure is a lot of inconsistent and conflicting information out there, from practitioners and patients, but my take trying to triangulate it all is that by itself, being homozygous for a1298c is reasonably...
  9. P

    Is there a reliable way to assess B6 status?

    And here is something interesting -- data from someone other than Walsh/Pfeiffer saying that in THEIR patients, high pyrroles did NOT correlate with B6 deficiency. http://orthomolecular.org/library/jom/1997/articles/1997-v12n02-p096.shtml
  10. P

    Is there a reliable way to assess B6 status?

    So I decided to start with the basic Labcorp blood test, which incidentally DHA Labs which is the preferred lab of the Walsh practitioners. My result is 35.7 ug/L with the lab range being 5.3-46.7. What do I know, but that sure doesn't sound to me like a profound deficiency of B6 as supposedly...
  11. P

    OAT - Organic Acid Testing - is it useful?

    So.... on the basic blood test, my result is 35.7 ug/L with the lab range (Labcorp) being 5.3-46.7. What do I know, but that sure doesn't sound to me like a profound deficiency from "pyroluria" requiring supplementation at 300 mg./day (3 times the official upper limit of safety), as I have been...
  12. P

    adaptogens

    Yeah that's the thing about some of these highly-marketed "blends" -- the dosages of any one adaptogen are tiny.
  13. P

    adaptogens

    These seem to be all the rage in alternative/functional as well as herbal medicine, touted for everything from depression to fatigue and almost universally proclaimed completely safe and side-effect free on a million websites. In doing some research, though, I came upon this quite disturbing...
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    OAT - Organic Acid Testing - is it useful?

    It makes sense to me to start with the basic lab test which I think is PLP according to Mayo, Labcorp, etc. Thanks all for your insight.
  15. P

    Is there a reliable way to assess B6 status?

    This article suggests it's a very complex topic. https://folk.uib.no/mfapu/Pages/BV/BVSite/pdf_files/literature/ueland_2015_arn_35_33.pdf
  16. P

    OAT - Organic Acid Testing - is it useful?

    Does it matter which lab, there seem to be several and not sure they all test the same things exactly? E.g. Genova, Great Plains.
  17. P

    OAT - Organic Acid Testing - is it useful?

    I am bumping this thread because I have been looking into whether there is a reliable test for B6 status and OAT was one of those mentioned. It seems people have very different views on the overall utility/scientific basis of the test and looking for any additional enlightenment before spending...
  18. P

    Is there a reliable way to assess B6 status?

    I very much appreciate that offer. Unfortunately I can't now find them, I must have neglected to copy them when I changed computers. I may be able to retrieve them from someone I shared them with and if so I will PM you.
  19. P

    Is there a reliable way to assess B6 status?

    My concern about Genova is that years ago, I had repeat organic acid tests done within just a month or two (one was standalone, one was part of NutrEval or perhaps its predecessor that was offered only as a package) and the results were quite inconsistent. I went from low to high on some...
  20. P

    Is there a reliable way to assess B6 status?

    It seems some claim organic acid tests can give a reliable measure of functional B6 status. As a side note, when I spoke to two practitioners about pyroluria, I pointed out that I don't have any of the classic physical signs of B6 or zinc deficiency, and that I have very vivid dream recall at...
  21. P

    Is there a reliable way to assess B6 status?

    I am not advocating for it, I am skeptical myself, especially after the recommendations I received. There are just so many of these niche theories out there it can be overwhelming.
  22. P

    Is there a reliable way to assess B6 status?

    I can only refer you to this thread and I am sure there are several here like it. Dominic certainly believes there is compelling evidence. https://forums.phoenixrising.me/index.php?threads/pyroluria-is-it-real-im-really-skeptical-and-here-is-why.44230/ As to the alleged deficiency in...
  23. P

    Is there a reliable way to assess B6 status?

    I hear you, recently I participated in a thread where people were advocating rather forcefully that it is very real and there seems no end to the debate or consensus. I tested positive for it myself, and even though my zinc seemed pretty in range from what I could tell (B6 is not routinely...
  24. P

    Is there a reliable way to assess B6 status?

    PS the doses recommended for pyroluria, at least by people I have talked to, are multiples of the supposed "upper safe limit" of 100 mg. per day. Which makes me wonder why only zinc (and copper) levels typically seem to be monitored?
  25. P

    Is there a reliable way to assess B6 status?

    This question is triggered by my recent interest in pyroluria. The theory there of course is that one becomes B6 deficient because it is bound by pyrolles and excreted -- or along those lines. So my question is whether there is a direct way to confirm that this is really happening by...
  26. P

    Supplements seem to have zero effect on me

    The point of this thread was not at all to be argumentative rather to see if others shared my experience, but in my dealings with functional medicine doctors there has seemed to be a circularity in their basic thinking -- that if I am not feeling well, it MUST be the result of some nutritional...
  27. P

    Supplements seem to have zero effect on me

    I don't have great confidence in NutrEval if that is the comprehensive Genova Labs test. Several years ago, I had the test just a couple of months after another doctor had ordered one component of the test from the same lab, I think the overlap was organic acids. Although basically nothing had...
  28. P

    Supplements seem to have zero effect on me

    I guess I should be thankful at least for not having the experience of getting worse. I can honestly say that has never happened to me. My working theory now is that since I do eat a very good and diverse diet, I must not have any real deficiencies, and I also must not have any conditions that...
  29. P

    Supplements seem to have zero effect on me

    Agreed, a good post. Still, no matter what, one could always posit that there is something one has not tried, or has not tried enough of for long enough. It becomes an endless quest. I feel that I am at the point where the fact that NOTHING I have taken has had ANY effect must mean something...