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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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Search results

  1. D

    Looking for some education around my mutations

    There is a lot of conflicting information about CBS precisely because it hasn't been well studied at all. A lot of the information that is helping people is not based on published studies but on clinical experience by people like my doctor who has worked with hundreds if not thousands of...
  2. D

    Looking for some education around my mutations

    Btw I have the same exact as these except for MTHFR C677T. I have other ones too, but these are the main ones I focus on.
  3. D

    Looking for some education around my mutations

    Note: one of the signs of upregulated CBS is low homocysteine. Mine is extremely, dangerously low, or at least was before I started this protocol. I need to test it again soon. So that's one lab marker. I also have elevated liver enzymes and extremely elevated B6 levels and high urine sulfate...
  4. D

    Looking for some education around my mutations

    Interesting opinion, but according to my doctor it has everything to do with CBS. And all my labs back that up.
  5. D

    Yucca hormone warning (and botany/history)

    I haven't seen this come up re Yucca and thought it was worth posting. For anyone using or interested in using Yucca for ammonia, be aware that it has powerful hormonal influence. Very soon after taking a Yucca supplement I had swollen breasts for a week (mimicking bad PMS) and then my period...
  6. D

    Looking for some education around my mutations

    I am ++ for that CBS and my labs and symptoms all match up with the sulfur and ammonia symptoms and related methylation issues, and addressing those issues by prioritizing and addressing CBS has been HUGELY beneficial for me. I don't care if there aren't "proven" studies or if there's...
  7. D

    Coffee Enemas!!

    Great idea on the poll. All of my unresolved lab tests and strange reactions to things finally made sense when I read about CBS and the myriad mechanisms there (note I also have 3 BHMT ++ and each of those also act like a CBS + even if you don't have any CBS+.) I have very low homocysteine...
  8. D

    Coffee Enemas!!

    I don't know. I know I'm celiac and that it runs in my family (Scandinavian blood is more vulnerable to it). A lot of things aside from gluten, like food poisoning, can cause intestinal damage too. But celiac brings on comorbid conditions like thyroid disease, painful skin rashes, skin cancer...
  9. D

    Coffee Enemas!!

    Oh very interesting berberine reference, I did not know that. Maybe just for short term use then and/or depends on the individual. Yes there are celiac SNP's. DNAfit analyzes them as part of their service (via 23andme or standalone) but probably other places do too for cheaper or maybe even...
  10. D

    Coffee Enemas!!

    Caledonia's guide is excellent! Jeez if I had seen that before it would have saved me a ton of research on my own. It's an excellent distillation of a lot of the very confusing info that's out there.
  11. D

    Coffee Enemas!!

    Oh I've seen Caledonia's name a lot but not sure I know the guide, I'll look for it, thanks. One of my main issues with Yasko's protocol is her tendency to "blend" substances in single formulas, and then throw like 50 formulas at you (then another 50, then another 50). It's technically...
  12. D

    Coffee Enemas!!

    I believe what's going on here is actually a logic and critical thinking problem. As I said before, I believe the type of CBS I have is a factor. No genetic component is a singular cause of anything. They're all factors that depend on other factors (environment, other genes, stress, etc). It's...
  13. D

    Coffee Enemas!!

    I guess in the sense that it might have protected me from getting an oral facial cleft. Hooray for that.
  14. D

    Coffee Enemas!!

    They just called it IBS then as far as I know. Anyway I guess you'd say mixed. Other than going gluten free (I am ++ on that genetic profile, not that I'm inviting attack from anyone on mentioning that..). Iodine and berberine are my winners. Maybe not at the same time, I don't know. Berberine...
  15. D

    Coffee Enemas!!

    Regarding http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2366099/ That article is about "Folate and One-Carbon Metabolism Gene Polymorphisms and Their Associations With Oral Facial Clefts" and I never said I have oral facial clefts, so yes, I totally agree with that one. No facial clefts here...
  16. D

    Coffee Enemas!!

    You'd have to provide useful links that substantiate your points. I'm not really getting anything substantial to go on other than you disagree.
  17. D

    Coffee Enemas!!

    I should also mention that aside from questioning your motivation, I believe your "facts" are wrong.
  18. D

    Coffee Enemas!!

    It's not the single SNP, it's the combination of that one with others forming a dynamic. Genetics is a systems science, not a singular causal one. A SNP is a factor, not a cause. Current science is predicated on a model of logic of single cause, single effect. Until a model of systems thinking...
  19. D

    Coffee Enemas!!

    no, it's not just about the caffeine.
  20. D

    Coffee Enemas!!

    Thinking about this, I don't know how beneficial CE's are for IBS. I was diagnosed with that about 15 years ago but removing gluten and taking a lot of iodine and soil probiotics got rid of it. I think of CE's as being for the liver. The route is intestinal but that's not the target. Maybe ask...
  21. D

    Coffee Enemas!!

    It's true that distilled water is acidic, whether it comes from a store-bought jug or a distiller at home. The acidity occurs because carbon dioxide from the atmosphere dissolves in the water, creating a very dilute solution of carbonic acid. Distilled water in a container that’s been sitting...
  22. D

    Coffee Enemas!!

    Not according to my pH strips and distiller, maybe it depends on the system.
  23. D

    Coffee Enemas!!

    Distilled water is acidic. I've never heard of anyone using aloe vera in an enema.
  24. D

    Coffee Enemas!!

    Here is a good summary: http://drjockers.com/cbs-mutation-low-sulfur-diet/
  25. D

    Coffee Enemas!!

    I don't follow Yasko because her protocols don't work for me at all. I find heartfixer Robert's protocol (and some others, I cut and paste as needed) better esp because he says he is hetero CBS C699T himself (I'm ++) so has some personal experience. He follows Yasko to a certain extent but I...
  26. D

    Coffee Enemas!!

    I'm ++ in CBS C699T, BHMT2, BHMT4, BHMT8, VDR/Taq1, MAO A/R297R and +- in 10 others on the Doctor's Data Methylation blood spot test, which only looks at 30. If you look at the Trace Minerals label it says "Sulfate 40mg" per serving...
  27. D

    Coffee Enemas!!

    re: Trace Minerals, sorry I didn't quote, I was referring to another commenter who said that Trace Minerals could substitute juices for mineral/electrolyte replacement, and I assume by capitalizing it they meant the brands that are sourced in Utah and are high sulfur. Anyway I disagree with that...
  28. D

    Coffee Enemas!!

    I'd love to be able to use Trace Minerals but all the ones I know of are high in sulfur, which CBS++ will turn into ammonia and create more liver toxicity. Do you know of any that are very low or sulfur free? I tried sodium bicarbonate once but decided against it (I use a ph...
  29. D

    Coffee Enemas!!

    Wow, this is the most hostile thread I've seen on this website. I don't spend much time on this website and I'm usually browsing over in the genetics/methylation sections and have never seen the kind of hostility over there as I see here. I'm also shocked that this thread is recent. I thought...