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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. sleepingbeautycan

    Vitamin D mega doses linked to early early waking?

    I have been always low in vitamin d. And when I am low, my sleep cycle goes sideways (I am not sleepy at midnight). And when I am really low I have bone pain and wake up with my nails embedded in my palms. So since starting to read this site I started taking my vitamin d very regularly and big...
  2. sleepingbeautycan

    Symptoms consistant with high ammonia but blood test normal

    It also may be that all of the vitamins and minerals that I was taking to support methylation are helping make me feel good (I stopped methyl products but kept taking the supports) .
  3. sleepingbeautycan

    Symptoms consistant with high ammonia but blood test normal

    Well, I guess the supplements I am on that seem to help are: Charcoal 3x per week at bedtime Vitamin E Glutathione Malic Acid I think the biggest help is the low protein diet. Which is good short term but when I went vegan a few years ago, I felt great for a while but after a bit I got more...
  4. sleepingbeautycan

    Symptoms consistant with high ammonia but blood test normal

    I went whole hog into the Dr Yasko belief that my CBS +/- could cause high ammonia mainly because of two things: The symptoms I have had for a long time were consistent with the high ammonia theory: Pain in the trapezius muscle exasperated by protein Blood tests with low eGFR, high...
  5. sleepingbeautycan

    MTHFR i numbers from 23andme

    It is the Minor Allele Frequency. It basically is a measure of how many times an allele happens in the population.
  6. sleepingbeautycan

    MTHFR i numbers from 23andme

    You know the i numbers from 23andme that you can't look up? Well I spent some time and mapped them by using the process explained to me by @Sea and @Valentijn and I went through the MTHFR gene and mapped the i numbers into rs numbers. Some of them don't have a rs number and those are listed as a...
  7. sleepingbeautycan

    Snps on the OTC gene Rs4621959 Rs5963418 Rs5963419

    You are right!! I am learning more every day. I am sorry to confuse you, but welcome to the club (we like to refer to ourselves as the chronically confused chromosome club -- membership is free) Yes, that is true but isn't it true that if the variant has any clinical effect it is negative...
  8. sleepingbeautycan

    Snps on the OTC gene Rs4621959 Rs5963418 Rs5963419

    It is good that it doesn't seem to be stopping you from taking your Mefolate!! Thanks for taking time to respond.
  9. sleepingbeautycan

    Snps on the OTC gene Rs4621959 Rs5963418 Rs5963419

    Sorry, I used those terms because some of the others on here are careful on their terminology. What I mean by the wild type is *usually* the one that is the problem. Ancestral type is the one that most people have and is *usually* the safer one. So if you have the same as Ahmo, you have...
  10. sleepingbeautycan

    UAA test, Urea Cycle, and the aminos that go with it

    Hey did you ever figure this out? I haven't had the UAA test but working towards it. Which aminos do you take and how do they work?
  11. sleepingbeautycan

    Interesting CBS Variations

    Thank you @Sea and @Valentijn I was able to look up an i number using variation viewer!!
  12. sleepingbeautycan

    Snps on the OTC gene Rs4621959 Rs5963418 Rs5963419

    I've been fascinated by the CBS effect on ammonia debate and in my research it occurred to me that maybe there is a small defect on a urea cycle gene that works with the CBS gene causing problems. My hypothesis is that there is a slow down in the urea cycle converting ammonia to urine and that...
  13. sleepingbeautycan

    I can't believe how many problems have answers

    I just realized that the pain in my feet and knees was caused by my diet coke addiction. I have no idea why. But that is done. I had gone off diet coke in January as part of a whole 30 diet. And I would sprint up the stairs!!! I had also lost 10 lbs so I thought it was the weight. But when I...
  14. sleepingbeautycan

    I can't believe how many problems have answers

    I agree with all of that. I am giving it a chance because we don't know and she nailed her prediction on my reaction. I'm not saying she is right and I don't admire her selling desperate parents lots of vitamins, but you don't know she is wrong either.
  15. sleepingbeautycan

    I can't believe how many problems have answers

    We are so young in the process of identifying SNPs that relate to disease that we have no way of knowing what future studies will show. Well she predicted my reaction. I had to take an anti-anxiety pill for the first time in a year after starting Meb12 and MeFolate. I don't know if she's right...
  16. sleepingbeautycan

    Interesting CBS Variations

    Oh darn! I thought someone had mentioned a government site and reading lots of small numbers. I really have no idea what I'm talking about. So the map view is ordered by location, and if I find the allele before or the allele after and there is a i number in the corresponding spot, then that...
  17. sleepingbeautycan

    Interesting CBS Variations

    How do I find the i5003529 in 23andme? I tried entering it into both fields and nada. Then I looked on the MTHFR gene and it has i5003527, i5003530 and i5003528. And where is the government website that allows the translation of the i numbers to the rs numbers. I think I have version4 from...
  18. sleepingbeautycan

    Help on my genetic genie results and questions about snp terminology

    I was on my tablet and I think I typed dbsnp and ended up here: http://useast.ensembl.org/Homo_sapiens/Variation/Explore?r=2:38070560-38071560;source=dbSNP;v=rs1056836;vdb=variation;vf=759507 Weird eh??
  19. sleepingbeautycan

    Help on my genetic genie results and questions about snp terminology

    Thanks. So on rs1056836, C is the ancenstral, but it is also the risk variant (or less protective variant). So on this site it is referred to as +/+ if you are homozygous C?
  20. sleepingbeautycan

    Help on my genetic genie results and questions about snp terminology

    Here is my genetic genie report: Here is what I THINK I have figured out: The snps predict that I might have stomach permeability issues. Which indeed I did have. I think they are gone with a lot of money spent on supplements. The snps also predict that I might have ammonia issues. I have...
  21. sleepingbeautycan

    I can't believe how many problems have answers

    Question about fingernails. I thought they were dead (ie. the supplements I am taking now won't affect the nails already there). But I noticed while I was off of my vitamins for 2 days they got brittle and started chipping and then today (two days after being on the vitamins again) they are not...
  22. sleepingbeautycan

    I can't believe how many problems have answers

    Yikes!!
  23. sleepingbeautycan

    I can't believe how many problems have answers

    Well, two days ago I decided to stop all the supplements until my new order came in. I knew I had had more energy since supplementing but Holy Cow!! Both days I felt like I was hit by a bus. I was dragging around like I had a piano tied to my butt. Yesterday I had more energy, but my brain was...
  24. sleepingbeautycan

    I can't believe how many problems have answers

    Interesting thing happened when I went to the chiropracter. She did an upper spine adjustment and I passed out onto the floor. I left and never went back. I don't know what happened but it scared the poop out of me. She also turned white. The thing is that the pain doesn't seem to be physical...
  25. sleepingbeautycan

    I can't believe how many problems have answers

    Summarizing... hmmm. Well I went to a Naturopath (David Peterson) for a while and he had me on a huge list of supplements (which were quite costly) but at the end ... no ibs. Here is the list: Morning: Norlox 1 cap Avipaxin 1 cap 10,000 IU vit d Resvero 5ml Curcumin-Pro 1 cap (400 mg...
  26. sleepingbeautycan

    I can't believe how many problems have answers

    I went to 3 places today to get it. No joy. Back to the amazon plan.
  27. sleepingbeautycan

    Is twisting the wrists while sleeping some kind of symptom?

    Thank you for making that clear. Yes these are things for me that resolve with the given vitamins. I just wish there was a list somewhere that had everyone's experience.
  28. sleepingbeautycan

    I can't believe how many problems have answers

    Wow that is great information. I will add this to my book to see if this works the next time it happens!! Cool
  29. sleepingbeautycan

    I can't believe how many problems have answers

    RIGHT???!!???!! I have been off of sulfur food for quite a while. Big time reactions. I am going to get the molybdenum today!!!
  30. sleepingbeautycan

    I can't believe how many problems have answers

    Oh such good information, thanks @Kathevans !! Darn I just checked and I don't have any B2 on it's own. When I am done I am going to have a bigger vitamin stock than a drug store!! I looked at the B2 deficiency symptoms, I didn't see anything that seems to be me. I do have ferritin levels that...