• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. V

    Palmitoylethanolamide (PEA) Supplement Experiences?

    This thread is old, but for those mining the forum for information on PEA... My early doses were 150-300mg/day, fractions of the 600mg PEA lozenge from Life Extension. These produced a relaxed "bliss" feeling I've sometimes felt with CBD, but also might've been responsible for a bad brain fog...
  2. V

    Active B12 Protocol Basics

    I have a question for Freddd, or anyone else very familiar with how people have experienced the protocol. I'm loosely following the protocol, and B12 is absolutely making a difference. But my experience is a little different from the norm. I understand Freddd to say there's usually a felt...
  3. V

    Active B12 Protocol Basics

    Copper supplements, in general, aren't absorbed properly by the body. Some of it bypasses the liver, turning into "free" copper in the blood (i.e., unbound by ceruloplasmin). Copper in your water supply does the same thing. It's probably not enough to cause Wilson's disease, but it's enough...
  4. V

    Chinese skullcap seems to correct PEM/the energy problem in ME

    I wanted to point out a possible alternate mechanism of action... baicalin has some antipurigenic effect. That means it has a similar type of action as Suramin, the drug Navaiux talks about as counteracting the Cell Danger Response, and the drug he's planning to use in a study for CFS/ME. I...
  5. V

    Cholestyramine (CSM) Treatment - Elimination of Toxins

    I believe it's a question of when you take it. If you take it with food, then yes, it will absorb nutrients. Having said that, it sounds to me like the referenced article trumped up the MTHFR nature of the problem, because whether you have the SNP or not, failing to absorb those nutrients will...
  6. V

    Tetrahydrobiopterin (BH4) deficiency in CFS and the connection to folate metabolism

    > People who have 23andMe results can check their SNPs for the enzyme GTP cyclohydrolase I (GCH1), > which is the rate-limiting step for production of tetrahydrobiopterin (BH4). True. BH4 could also suffer from insufficient recycling (a few other genes/cofactors), excessive conversion to BH2...
  7. V

    How to ship blood to Health Diagnostics - practical questions...

    Glad you found the link on Dr. Lynch's site. To your question thinpaperwings... Everything turned out OK. I think it's probably a good idea to put the note in there, saying it's for him. Prepare to wait a lifetime to get your results... I don't remember exactly how long it was, but it was...
  8. V

    Methylation Protocol Diary

    I empathize with your ambiguous results, although I've had enough positive signs in my own methylation ramp to feel hopeful. It's appeared to me that as I've gradually increased my daily dosages, that I end up with sleep troubles for several days, and then I adapt. When I've jumped the gun...
  9. V

    Metafolin and the Donut Hole - Latest Chapter of Pradoxical Folate Deficiency

    I believe what Rich recommended was: * 2000mcg hydroxylcobalamin (although this last summer he was considering a switch to methyl) * 200mcg 5-MTHF ("methylfolate") * 200mcg folinic acid (aka 5-formyl-THF) * (in addition to the lecithin/PS and baseline multivitamin) However, I think the...
  10. V

    Methylation Protocol Diary

    Hello Erist, You might consider taking a consistent value of everything, every day. I know the weekly or bi-weekly thing is done, on a number of different kinds of supplements/meds. But our bodies were designed to operate in daily rhythms. That includes (under ideal, non-sick, healthy-diet...
  11. V

    Simplified methylation protocol - normal symptoms?

    OK -- thanks Searching. That's kind of what I expected. With respect to methionine, I think he can only be talking about SAMe and SAH, since homocysteine and methionine aren't in the panel, and low intermediates in the folate cycle wouldn't explain a lack of material within the SAM cycle.(but...
  12. V

    Simplified methylation protocol - normal symptoms?

    Hi Searching, I wish I had an answer for you... Many people have reactions that involve a 'sped-up brain' (including me), but I can't tell if that's what you're describing. I can't imagine it would apply only to night, though. In any case, many people have found that starting with full...
  13. V

    In Memory of Rich Van Konynenburg.

    This news hit me like a ton of bricks. Since I discovered Rich and his theory 3-4 months ago,I have spent countless hours following in his footsteps, trying to learn the physiology. I have scoured this forum, studying just about every post he’s ever made. I feel like I knew him...
  14. V

    Is there a SNP that explains T4 increasing Histamine levels?

    UM MAN, This is a real reach, but I'll put it out there. I haven't gotten very far in investigating it. There's a SNP to FADS1 -- rs174537. (I discovered yesterday I have this.) My understanding is that it interferes with the body's delta-five desaturase enzymes, which convert the omega-6...
  15. V

    Bad reaction to MB12

    Yes, something about methylation startup inspiring more cell growth, and new cells need potassium. A serving of Bone-Up has only 99mg of potassium; 3.5oz of coconut water has 250mg, and it seems to me it might get absorbed more easily. OJ is a great source also, and I've been aiming for 2-4...
  16. V

    Bad reaction to MB12

    Hi Zamora, I don't really have answers for you, but I wanted to echo that this sounds like my own experience the last month. I've been ramping on the Simplified Methylation Protocol. Something in B complexes gives me late afternoon anxiety, and the Neurological Health Formula tablets have...
  17. V

    My amino acid results

    Hi Gavman, I doubt I can tell you anything Rich can’t, but I’d be happy to provide my amateurish views. The urea cycle basically consists of ornithine, citrulline, and arginine in a cycle, and its basic function is to convert ammonia to urea for excretion. If the urea cycle doesn’t function...
  18. V

    How to ship blood to Health Diagnostics - practical questions...

    I'm going through the same process today, for how to get blood drawn for the methylation panel. I called CPL, and they eventually told me they'd do it if I presented a doctor's requisition. But the two people I talked to didn't seem very certain about it, which gave me doubts that I wouldn't...
  19. V

    Case where methylation protocol (-ish) didn't raise glutathione

    Hmm. More information is always better, isn't it. ;-) If this stuff were free, I'd do it weekly, and assuming others did as well, we'd all know a whole lot more about CFS/ME. It's good to know it may be possible to get glutathione separate, if that's what I decided. I'll definitely do the...
  20. V

    Case where methylation protocol (-ish) didn't raise glutathione

    Rich, thanks for breaking down the value of those tests with respect to glutathione. Given the availability through Dr. Ben, I’ll probably do the panel, up front at least. But I may use Organix for monitoring -- it covers more information for less money, if not as specific. Is there a...
  21. V

    Case where methylation protocol (-ish) didn't raise glutathione

    Thanks Caledonia -- that's what I was looking for! I even called HDRI today and asked if there was someone that did this sort of service, like Direct Labs usually does -- they didn't seem to know of anyone. Dreambirdie, the link says at the bottom that the methylation panel is by Vitamin...
  22. V

    Case where methylation protocol (-ish) didn't raise glutathione

    Rich, thanks much for your time and insight. Maybe there's reason to believe that my deviations from the protocol contributed to the lack of glutathione progress. I think I'll try it again, simultaneously supporting my gut, before doing any active chelation. I didn’t realize the Organix...
  23. V

    Case where methylation protocol (-ish) didn't raise glutathione

    Hi All, I’m hoping for some insight from the folks here. I also know Rich has some interest in cases where the protocol didn’t work, and I wanted to provide that feedback. I've been gearing up to try the simplified methylation protocol. But after going through my notes, I realized I...
  24. V

    More ammonia in Urine since started methylation

    This thread has aged a little, but I just discovered this forum and would like to discuss this particular topic... Dr. Yasko’s NutriSwitch RNA supplements are... interesting. Unapologetically $85/bottle, with not much immediate explanation as to why, or what they are, or how they differ from...