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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. O

    can one have anything to do with ME/CFS if one has only mental fatigue?

    This ME/CFS seems to be a not very well defined thing, at least I can't find what exactly is within the scope and what not. If someone has only mental fatigue, but not physical, can it have anything to do with the topics of this forum? I find that especially two kinds of thins exhaust mentally...
  2. O

    Pyroluria, is it real? I'm really skeptical and here is why.

    I didn't freeze it, just kept it in the fridge. I know not freezing can deteriorate the kryptopyrroles, but I think just 24 hours, and in reasonably cold temperature close to freezing point, is not gonna deteriorate them below detection in many cases. There is no perfect method for detecting...
  3. O

    Pyroluria, is it real? I'm really skeptical and here is why.

    Well, Borage Oil is the best GLA source and is vegetarian. But the gelatin softgel it comes in is animal source probably. Maybe there is some borage oil in vegetarian capsules. It is recommended not to take any B6 or zinc for a month before the test. Although I took 100 mg P5P for many days...
  4. O

    Pyroluria, is it real? I'm really skeptical and here is why.

    Here is a good summary of the protocol, forms and dosages: http://growyouthful.com/ailment/pyroluria.php#remedies-for-pyroluria 30 mg of Zinc Picolinate and 34 mg (it is often sold in that amount per pill) of Pyridoxal-5-Phosphate (P5P) can be a good start. Some apparently need to take much...
  5. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    I don't notice feeling any different eating liver, I don't think anything is worse. I have tested whole blood histamine again, with another lab, and this time its 84.1 ng/ml, so now its high. In December 2015 it was 28.2 ng/ml. I wonder if it was supplementing with 1500 mg L-Histidine HCl...
  6. O

    I got very high vitamin B12 serum level, is it bad?

    Well, the thing is I experiment with so many different things, it will be difficult to isolate the effect of vitamin B12, and I can't devote several weeks just to test B12 as there are other issues waiting, I am going to start Neuroprotek and adaptogenic herbs, etc. So I am looking for ways to...
  7. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    No, and my copper wasn't even high in the first place, I was supplementing zinc because of zinc deficiency. Copper was lowish actually too, now my ratio is skewed with too much zinc too little copper. Doesn't make a difference with OCD.
  8. O

    I got very high vitamin B12 serum level, is it bad?

    After supplementing 5000 mcg Jarrow Methylcobalamin and 10 mg Source Naturals adenosylcobalamin (dibencozide) daily for a few months, my serum B12 level on last blood test is 5556 pg/ml. Is it bad too have it so high? How do we know we had enough? In December 2015 I tested 1425 pg/ml serum B12...
  9. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Done that already a long time ago, several times. Also RBC minerals. Actually my copper levels are a bit low after supplementing 65 mg Zinc a day for a few months. I started eating liver again to get my copper up a bit.
  10. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    The strange thing is, that while I am undermethylated, according to my SAMe/SAH ratio (low SAMe, high SAH), my whole blood histamine is actually low: 28.2 mcg/l, and Dr Walsh says that everything below 40 is overmethylated. These two parameters where measured from the same blood sample, so no...
  11. O

    Probiotics not showing up on stool test.

    Instead of focusing on the tests, I'd look closer at the probiotics you took. Their potency, quality. You didn't even tell us exactly what products you used, at what dosage, and their amount of CFUs. Probiotic brands differ a lot in quality, and many of them might have most of the bacteria...
  12. O

    is it good to take sublingual Methylocobalamin when I sleep?

    Well, the Jarrow Methyl B-12 5000mcg has xylitol, which supposedly is good for teeth. But it also has citric acid. I was more asking about the timing of the Methylocobalamin absorption. Or it doesn't matter, because it builds up in storage, and I could be doing 10000mcg every second day...
  13. O

    is it good to take sublingual Methylocobalamin when I sleep?

    I take Jarrow B-12 Methylcobalamin 5000 mcg under the lip, one daily, and it bothers me too keep it there for a long time, and people tell me my teeth are bleeding. I started taking it just before I go to sleep, so it stays there overnight. When I wake-up in the morning there is still pill...
  14. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    I don't usually know, because the shape of my toilet doesn't allow to observe that, so today I defecated in a bucket of water just to see, and it sank. But today it was actually a bit more firm then usual (still a bit on the mushy side, and started disintegrating quickly in the water). Still...
  15. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    I also take Lithium Orotate 120 mg = 5 mg elemental Li, but it doesn't help me. When do you take yours, morning, everything, on empty stomach or with food? If digestive symptoms I have usually a mildly mushy stool, which is yellowish-greenish colour instead of brown and firm, which I...
  16. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Why "the values in the hair test do not represent the minerals in your body"? Because of the way TEI does the testing, or because the pattern shows deranged mineral transport? As I understand the only way to know for sure if its mercury, is to start chelation and see if I get any reactions...
  17. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Quitting gluten, grains, sugar helped my ADHD, which I had more of before, but my OCD where I get obsessive thoughts and get stuck in my mind on one thing is still there. Although maybe less, because before I was wasting time aligning cans in supermarket when I went shopping, and bought...
  18. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Assuming the analysis is correct, an in fact I have "deranged mineral transport", does that in itself mean I have brain mercury toxicity and enough proof to warrant chelating, or are there any other tests I could perform to find out for sure? Of course I will do another hair test with DDI...
  19. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    @TheChosenOne I don't know what percentile is the reference range, but because the ranges are generally similar to Doctor's Data (which are 16% percentile), let's assume for now that its 16% too. The units are mg%, so multiply by 10 to obtain mcg/g. For easier overview, I've put together a...
  20. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    But, I am using it because of: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1691485/ Although not sure if it gives me much benefit, as I eat a lot of meat. What lab tests I could to see how creatine is affecting me? I would like to only take supplements that I can measure via lab tests (blood...
  21. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Trying to apply the counting rules is difficult because the ranges are different, and I am not sure where is the 50% mark on my test, but: STEP ONE: Above 50%: Ca, Sr Above 50% only if using Doctors Data ranges: Na, Cr Somewhere around 50% mark, not sure if above or not: S So that would be max...
  22. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Here is the TEI result attached. Its in polish, but the element symbols are the same. Is there a version for the counting procedure for TEI results, as the number of elements and ranges are different? "Too much supplements" is not really specific, and when you look at the list it may seem...
  23. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    OK, now I read the moriam page, and the counting rules, and I see that low Hg mg% means nothing, and reading the "counting rules" I see that if lot of hair minerals in the low levels or completely out of lab range, can mean abnormal mineral transport. Interesting, this opens up other...
  24. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Thanks Caledonia. I already did a hair test with Trace Elements, twice. Most of the minerals (except Calcium) where low, some super-low, so based on that I started supplementing Molybdenum and Lithium which where almost non-existent. Also low potassium, but 2x500mg potassium citrate a day (360mg...
  25. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    I plan on stopping all supplements for 3 days in December and doing most of the tests from http://europeanlaboratory.nl/ as well as NutrEval and Spectracell, and then adjusting the dosages up/down depending on the level in the body. Almost all of the supplements I am taking are substances which...
  26. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    I just started reading everything possible about MTHFR, and it all seems very complicated, and confusing, it will take me days or weeks of learning to figure out, for now I am taking 1000 mcg 5-MTHF daily, and also eating quite some leafy greens, so my total daily folate is even higher. Anything...
  27. O

    I have OCD, anxiety, likely undermethylation,very mild pyroluria

    Hello! This is my first post on the forum. While I do not have ME/CFS, there are a lot of discussions on this forum about methylation/OCD and similar issues, so I allowed myself to post too. My problem is mainly OCD, anxiety, high stress for almost any reason, I have no physical symptoms of...