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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. ChetRoi

    Burning mouth and methylation @Fredd : HELP PLEASE

    My burning mouth syndrome symptoms diminished after taking Alpha Lipoic Acid, 600mg bid, shown in studies to modulate cellular signaling and, in clinical trials, to be effective in the treatment of BMS.
  2. ChetRoi

    Looking for adb12 that is low-FODMAP (no sugar alcohol)

    @shoponl do you take a low-FODMAP MB-12?
  3. ChetRoi

    Low Potassium Caused by B12

    My understanding is higher dose MB-12 or AB-12 can cause frequent urination. Potassium leaves the body (through urination) much more rapidly causing hypokalemia. Weight lifters who take a lot of AB-12 often have this problem so they supplement with potassium. Those who do not sometime have...
  4. ChetRoi

    Just Published: Research on B-12 and B-9 as Rx for ME/CFS and Fibro

    I appreciate you stepping in on this one, Dr. Edwards. Education can sometime be a humbling experience and I confess a degree of giddiness when I saw, for the first time, research that closely lined up with my own trial-and-error efforts over the past 15 months. Nonetheless, I cannot readily...
  5. ChetRoi

    Just Published: Research on B-12 and B-9 as Rx for ME/CFS and Fibro

    Thanks, dannybex, for that further response. I have written to the primary author for clarification on the supplements the patients used. I'll post with comments about my experience along this path when he responds.
  6. ChetRoi

    Just Published: Research on B-12 and B-9 as Rx for ME/CFS and Fibro

    I see it very differently. The authors make generic references to methylcobalamin and hydroxocobalamin as B-12, and use both terms folic acid and folate in referring to methylfolate. And what does one make of Figure 1? Notwithstanding a quick dismissal of this research, I found their work and...
  7. ChetRoi

    Just Published: Research on B-12 and B-9 as Rx for ME/CFS and Fibro

    @Freddd A paper published in April 2015 entitled "Response to Vitamin B12 and Folic Acid in Myalgic Encephalomyelitis and Fibromyalgia" discusses a strongly positive response for ME/CFS patients to a methylcobalamin and methylfolate combination. Here's the link for those who haven't given it a...
  8. ChetRoi

    Methylfolate moderates stocking-glove numbness, as methylcobalamin previously did

    Yes to the first question; 1.6 or thereabouts, on average, of MB-9. The glucose reading dropped about 30 points over five days, then came back up about 30 points over a second five day period. With regard to your second question, I have not tested that frequently. I am using inexpensive...
  9. ChetRoi

    Methylfolate moderates stocking-glove numbness, as methylcobalamin previously did

    Sorry for the delayed response, @dannybex. I have not pushed folate much past 10mg/day. With a steady 7mg/day in three doses, or 10mg in a single dose, I haven't had a glucose reading below 77. Interestingly, after taking a 10mg dose in the morning, I have seen a five day slide of glucose...
  10. ChetRoi

    Methylfolate moderates stocking-glove numbness, as methylcobalamin previously did

    I do have many of the SNPs you have listed, most notably MTHFR A1298C, MTRR A66G, BHMTs, and others. Yes, I've had tests for B6, as-well-as B1/2/9/12. All were OK except for elevated folate. For me the burning calves were very clearly a B-12 problem. They would burn on the first turn of my...
  11. ChetRoi

    Methylfolate moderates stocking-glove numbness, as methylcobalamin previously did

    Yes. This effect is sometime referred to as a painless migrane.
  12. ChetRoi

    Methylfolate moderates stocking-glove numbness, as methylcobalamin previously did

    I posted several months ago seeking assistance on an idiopathic symmetric sensorimotor stocking-glove axonal polyneuropathy. I’m 67; numbness started in feet four years ago. Over the years proprioception probs, ataxia, positive Romberg, leg weakness but no pain, slowly advancing numbness...
  13. ChetRoi

    Methylation Pathway Panel--Which One?

    Three days on this protocol and success is clear. Numbness in arms/hands/fingers markedly reduced. Upper legs now with light numbness, lower legs reduced numbness, even soles of feet marginally better. Thank you, @Freddd, for your recommendation. BTW, I had very few side effects, mainly...
  14. ChetRoi

    Methylation Pathway Panel--Which One?

    OK! Is there a better AdoCbl than the 3mg sublingual from Seeking Health that I have used?
  15. ChetRoi

    Methylation Pathway Panel--Which One?

    @Freddd. I'll start the first of several trials Monday/Tuesday designed to determine which co-factor stops the numbness advancement. First will be your suggested 30mg of Enzymatic Therapy (chewables) taken over a twelve hour period. I will have the product by Monday evening and can start...
  16. ChetRoi

    Methylation Pathway Panel--Which One?

    Hi Freddd-- Here's my assessment of possible causes ordered from least likely to most likely. Oral MB-12 started, oral CB-12 stopped, Feb13. First notice (very subtle) of renewed numbness to feet start of May. However, other (successful methylation) symptoms such as pain relief from...
  17. ChetRoi

    Methylation Pathway Panel--Which One?

    Aggressively returned (polyneuropathy) numbness/stiffness has advanced from feet to upper legs and hands in a couple of weeks, showing no signs of stopping. Been on methyl B-12 for six months enjoying remission but unexplained quick return of symptoms is not responding to trials of mix of MB-12...
  18. ChetRoi

    Success Then Rapidly Moving Relapse in Spite of MB-12

    Just found this. You may have already seen it, @Freddd. It's from 2007. http://www.pnas.org/content/104/50/19995.full.pdf " Based on this paradigm, we propose that the high serum MMA associated with the combination of low B12 status and high plasma folate status stems from the disruption of...
  19. ChetRoi

    Any Veterans Getting Methylation Support from the VA?

    Thanks for your thoughtful reply, @Victronix, and congrats on your success.
  20. ChetRoi

    Any Veterans Getting Methylation Support from the VA?

    Hi Tammy-- Please see my adjacent post: Success Then Rapidly Moving Relapse in Spite of MB-12 where I detail my treatment and the current difficulty I have encountered.
  21. ChetRoi

    Any Veterans Getting Methylation Support from the VA?

    Treated for B-12 deficiency for eight years by the VA with cyanocobalamin but signs and symptoms of polyneuropathy progressed. I finally found this site and replaced the Cyano with methylcobalamin. A dramatic difference in muscle strength the next day, followed by substantial sensory and motor...
  22. ChetRoi

    Success Then Rapidly Moving Relapse in Spite of MB-12

    Thanks for your response, @Martial. A few more data points: • My last three serum K test results (all pre-supplementation): 2/2013 4.4, 8/2012 3.7, 5/2012 4.6. • I have been taking a multivitamin, Seeking Health’s Optimal Multivitamin Chewable With L-5-MTHF. It contains “Total...
  23. ChetRoi

    Success Then Rapidly Moving Relapse in Spite of MB-12

    Thanks to @Sushi, @Freddd, @2manyhobbies, @Martial, @xrunner, @girlfromeurope for your advice. As Freddd indicated, the first order of business for me is to get back to the regimen that was effective. This required a careful reading of my daily (excel) log since intermittent remarks started...
  24. ChetRoi

    Success Then Rapidly Moving Relapse in Spite of MB-12

    Thanks for your suggestions, 2manyhobbies. Additional data points: *Been taking K (198 mg daily) and eating bananas right along. *Ordered B6 (P5P); arrives tomorrow. Intend to start with 50 mg. *Haven't addressed Z as yet but will read up on it.
  25. ChetRoi

    Success Then Rapidly Moving Relapse in Spite of MB-12

    First post to this forum/blog; been lurking for about six months. Learned a lot about treating myself with measurable success but I’ve recently had a setback after titrating sublingual Methyl B-12 and Adeno B-12 concurrently while taking a low dose of L5MTHF. (Nonetheless, I’ve been able to help...