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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. DKnickerbocker

    How to untrap a methyl trap

    Been a while since I've been on…. a lot has happened…. burning an bile diarrhea/poop worse. My PCP thought I had a gut infection…. put me o antibiotics… felt good for a day or two… like old self… then massive diarrhea (likely from antibiotics) also got really bad neuropathy from the flagyl…...
  2. DKnickerbocker

    How to untrap a methyl trap

    Thanks freddd… I'll check the brand of Methyl folate tomorrow (it is at my office) and email you tomorrow… it is not Dr. Lynch's. I wat to clarify about the veggie herding issue. For several years I've been getting right lymph node pain periodically in my neck. back in 2009 I got dx with lyme…...
  3. DKnickerbocker

    How to untrap a methyl trap

    Thanks for writing back Freddd… would it be ok to use the methyl b12 I already have… I forget the name but I did take it for a month and a half… I've already ordered some adeno b12 from Dr. Ben Lynch's site… would that be ok… I'm familiar with L carnitine… I used to take it all the time when I...
  4. DKnickerbocker

    How to untrap a methyl trap

    Freddd. you still out there… ??? I could really use your suggestions on how to get out of this methyl trap. I'm a blank slate at this point… I'd be open to whatever you suggest… what to take… what not to take … what to eat… what not to eat What I'm doing is obviously not working,,, So your...
  5. DKnickerbocker

    How to untrap a methyl trap

    Hi Freddd, Thanks for your response... just a clarification... There are two kinds of Estrium... They do make a Whey protein version.... but I was not taking that... I was just taking the plain estrium to help clear estogen... was not not taking any Whey during any of this.... although I...
  6. DKnickerbocker

    How to untrap a methyl trap

    Thanks Martial !!! Yes, I'm actually a psychotherapist... so I'm used to helping folks with anxiety and panic attacks...So I'm on the other side of the desk now... LOL !!! Thing is... I'm still convinced these have a physiological cause.... like they are squirrling with my...
  7. DKnickerbocker

    How to untrap a methyl trap

    Hi Freddd, Well again… I had no ME/CFS symptoms prior to November… Only symptoms I was dealing with were elevated estrogen at times…. weight gain over the past several years with an inability to lose any weight despite eating a lower processed carb/paleo style diet and regular exercise… In...
  8. DKnickerbocker

    How to untrap a methyl trap

    Yeah if I don't have a heart attack or stroke first… my doc took my BP the other day and my diastolic was 105… and m heart rate was 115…. those came back down a bit but it has remained high… but with 2 copies o C677T MTHFR and BP that is not good for my heart !
  9. DKnickerbocker

    How to untrap a methyl trap

    No CFS or M.E. … Only reason I even got tested for the MTHFR was because of the reaction I had to th Estrium. Infact I had taken regular synthetic b vitamins for years and never had any issues… it was not until I added that Estrium… that it sent me over the edge… got toxic or triggered...
  10. DKnickerbocker

    How to untrap a methyl trap

    I'll look into the green tea… I already eat a low carb diet… intact I've felt so bad… haven't been eating much of anything lately… I've dropped 18 lb in the past month and a half
  11. DKnickerbocker

    How to untrap a methyl trap

  12. DKnickerbocker

    How to untrap a methyl trap

    Hi Thanks for responding My potassium is 4.0 (3.5-5.3). With regards to the MTHFR folks and Dr. Lynch…. I an tell you from personal experience… I get those symptoms with the methyl… severe agitation and anxiety… even the hydroxy… I took a half tablet last week and within a couple hours I felt...
  13. DKnickerbocker

    How to untrap a methyl trap

    Freddd, Do you have an suggestions ?
  14. DKnickerbocker

    How to untrap a methyl trap

    Thanks !!! I've …used niacin before to help with some of those symptoms. I've had two really bad episodes with synthetic b-vitamins since November (never had that before) So I'm a bit leary of vitamins in general right now… that is why I was wondering if the built up methyl folate eventually...
  15. DKnickerbocker

    How to untrap a methyl trap

    Yeah, I thought about doing the… But he MTHFR support folks think I have COMT (my still waiting for my 23andme test to come back) and told me not to take anymore methy b12 … they also told me to hold off because of possible CBS pathway stuff... Oh my Histamine level came back just under top...
  16. DKnickerbocker

    How to untrap a methyl trap

    Hi, I've made a few posts on here about my problems with b-vitamins, subsequent MTHFR dx, and problems with methyl bs. I'm not sure but I think I may have developed a methyl trap situation and I'm wondering how I can get out of it… So I started methyl b12 and methyl folate back in mid...
  17. DKnickerbocker

    I found a new MethylCobalamin lozenge that’s more effective for me than Enzymatic Therapy

    thanks, New on here… don't know all the protocols yet ! How do you tag someone on here ?
  18. DKnickerbocker

    High folate levels

    symptoms wore off after a couple of hours… felt pretty rough for a bit though…. kind of scary they were just protein bars I bought a work… can't remember the name... both were fortified with vitamins though… I think it was the combo of them and the multivitamin… I could feel it building up...
  19. DKnickerbocker

    High folate levels

    Hi Skwag, The Estrium I took back in November was not the Estrium Whey, bu rather just the regular powder designed to clear estrogen… This was before my MTHFR dx… at the time I tolerated b vitamins fine… problem was I was taking b-12, b-complex and a multi when I started the Estrium… The acute...
  20. DKnickerbocker

    I found a new MethylCobalamin lozenge that’s more effective for me than Enzymatic Therapy

    Hi fredd…. your 2nd to the last post sounds like some of the symptoms I've been dealing with since November… not sure if it is a Methyl trap… wondering if you could pop over to my thread on "High folate Levels" and add your 2 cents I'm desperate to find some answers… and these health issues...
  21. DKnickerbocker

    High folate levels

    Hi Adreno, Well I don't do well with Methyl b12 (the MTHFR support folks are betting I have COMT) They are also telling me not to revist the methylation until my gut health is checked and they look for any possible COMT and CBS pathway issues.... I know there are other forms of b-12 ; the...
  22. DKnickerbocker

    High folate levels

    Thanks for the suggestions... I did the a DNA based stool test a few weeks ago and am waiting for the results... hopefully that will show something.... Again just not sure if this is more of a Methyl trapping or gut issues.... It is all very confusing... I just want to get this symptoms...
  23. DKnickerbocker

    High folate levels

    Just wanted to ask a bit more about the Whole "Methyl Trapp" possibility. I'm trying to read on this and it is very confusing.... Prior to november (and my MTHFR dx) I had no symptoms and could tolerate regular B vitamins just fine. I regularly took a b-12, B-complex and Multi-vitiamin . It...
  24. DKnickerbocker

    High folate levels

    Not sure about the folate testing other than what I listed above…. The first attack happened prior to my MTHFR dx back in November. Once diagnosed I stopped the regular supplements and switched to methyl b12 and folate…but I did not do well with those…had agitation from them… still waiting for...
  25. DKnickerbocker

    High folate levels

    Hi Crux, That is interesting… never would have thought of gut issues… But now that you bring that up… I had a second attack 2 weeks ago… I took one multi-vitamin and ate 2 protein bars over a 2 day period…. Not only did I get a really bad attack of pins and needles and burning, but right...
  26. DKnickerbocker

    High folate levels

    Got a question about high folate levels in my last blood test. I have been dx with MTHFR 2 copies of C677T I had some really bad reactions to taking b vitamins prior to my dx… That was 2 months ago. I recently had some vitamin blood levels done… my Hemactocrit was 48.3 (38.5-50) and my Folate...
  27. DKnickerbocker

    Neuropathy symptoms and yellow diarrhea after injesting vitamins

    Hi Folks... this is a continuation/offshoot of my Thread entitled "MTHFR Acute Symptoms" So as my previously thread discusses I have MTHFR and had a really bad reaciton to a bunch of B-vitamins back in november prior to my diagnosis... I then went on Methyl B-12 and Folate for about a month...
  28. DKnickerbocker

    MTHFR- Acute Side Effects

    Maryb… it is amazon how one thing can kick something off… which nutrients are you not absorbing ??? MTHFR have trouble with converting folic acid into folate…. There are other gene defects that can impact absorption as well as clearing the bad stuff…. COMT folks apparently don't do well with...
  29. DKnickerbocker

    MTHFR- Acute Side Effects

    Eating "Real food" will generally give folks what they need... Easier said than done from someone who was eating processed protein bars LOL. If you eat the rainbow of fruits and veggies every day you are doing pretty good. Some people juice or do green smoothies... which I like. Only problem...
  30. DKnickerbocker

    MTHFR- Acute Side Effects

    Thanks Helen for your response.... I'm working with the folks from MTHFR SUPPORT tregarding getting the 23andme broken down. They have an app and Shawn Bean is pretty good at interpretting the SNPs. I took a look at the slides from Rich's presentation. While the Estrogen is an issue... I...