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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. D

    Lack of proteases (pancreatic enzymes) and the symptoms of CFS

    Have you tried Enzymedica, Digest Gold Enzymes. This one does not burn my stomach. Start with one time a day at breakfast. Slowly increment to 2 times a day (breakfast and dinner). If it burns go back to one time a day.
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    Lack of proteases (pancreatic enzymes) and the symptoms of CFS

    hi Annesse, I am from several of the B12 deficiency/Freddd protocols sites. I recently started to take digestive enzymes. I don't have CFS, but did suffer from a horrendous B12 deficiency incident about 2 years ago. I still have sensory nerve issues down both legs, but the Freddd protocol has...
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    Taking Vital Whey - thinking about Methylation Cycle Block protocol

    hi Rich, i replied in similar to your response on the Slow methylator? Methyl B12 intolerance? thread. I think people should be aware of some of the adverse reactions that have occurred with glutathione administration. Here is a post of my reply on the thread above. I think it merits...
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    Slow methylator? Methyl B12 intolerance?

    hi Rich i had mentioned the NADPH theory last year in the Freddd wrong diagnosis thread, but no one replied and I assumed no one was interested in the information. This is clearly spelled out in Pangborn and Baker's cautionary status on glutathione as a supplement for autistics (section 5, p...
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    Wrong Diagnosis Site - Fredd's Protocol

    hi Rydra, thanks for the interest in Rosacea. I keep this beast under control mainly through diet, although i had to recently go back on low dose doxycycline to get it fully under. It if stop eating :) the rosacea goes away. I always knew in the back of my mind that it, like so many other...
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    Wrong Diagnosis Site - Fredd's Protocol

    hi Rydra, I will chose the Avatar. The Digestive enzymes are called Digestive Gold by Enzymedica. It has no fillers at all, no allergens, etc. I don't react to it at all and I am extremely senstive. (no corn, soy, etc as well). You can also google it for more information. It is sold...
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    Wrong Diagnosis Site - Fredd's Protocol

    Off topic (but Freddd always stated nothing is off topic) Just wanted to post this interesting link with several references to the gut and serotonin. I am convinced that my B12 issue a few years back was due to gut and gut absorption issues even though i did not test positive for the Intrinsic...
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    Wrong Diagnosis Site - Fredd's Protocol

    i found you guys. Yes this is very interesting. Regarding your comments on digestive enzymes, do you have any medically technical links on long term use of digestive enzymes, risks, etc. I understand the burning a hole in your stomach, however the ones that i am taking are pH balanced. I...
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    Wrong Diagnosis Site - Fredd's Protocol

    i found you guys. Yes this is very interesting. Regarding your comments on digestive enzymes, do you have any medically technical links on long term use of digestive enzymes, risks, etc. I understand the burning a hole in your stomach, however the ones that i am taking are pH balanced. I...
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    B-12 - The Hidden Story

    Natural Factors does not have any sorbitolor mannitol.I have problems w/ these as well. However it does have lactose. It works fine for me and those who are not lactose intollerant. I get sublinguals (mini-trouches) from Fred's compounding pharmacy at 5000 mcg each. They are made w/...
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    B-12 - The Hidden Story

    Have you tried Mg Taurate. This is the only one that really works for me. The combination is really effective for intracellular penetration.
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    B-12 - The Hidden Story

    Thorne Bcomplex #12 is very good as well. The B6, B12 active forms and both active forms of folic (folinic and 5-MTHF). I have 2 a day.
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    B-12 - The Hidden Story

    thanks. Metafolin is basicially L-methylfolate, correct? I noticed that folate has 2 active diastereroisomers, 6(S)-5-MTHF or L-methylfolate (the primary active form, transported acrros the mebranes) and 6(R)-5MTHF (D-methylfolate) which interferes with L-methylfolate bioavailability. I...
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    B-12 - The Hidden Story

    hi Freddd and Rich, i missed the earlier posts regarding this. Can you please restate the context for Freddd's trying this product out. ? I see they do sell it at iherb. thanks
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    B-12 - The Hidden Story

    hi David, Wildaisy, This was intially my response as well during the intially stages of recovery from my B12 deficiency. Once you reach a serum equilibrium this effect my cease as it did in my case. The sublingual mb12 no longer make me fall asleep. However, when i take an 8mg/injection...
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    B-12 - The Hidden Story

    hi Freddd, I forgot to mention that I am on no prescription medication at this point, except for the levox. for the thyroid. Perhaps the enzymes might start dropping after a year or two as I continue on this protocol. The enzyme rise was coindicent with the drop in b12 levels.
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    B-12 - The Hidden Story

    hi Rich or Freddd, Having gone through the large discussion on Hashimoto's and autoimmune disfunction/adrenals in the past few weeks, do you think that the b12 deficiency (the last 4-5 years the b12 levels were dropping, until the crash several months ago) could have caused autoimmune...
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    B-12 - The Hidden Story

    Thanks all for the most interesting discussion. I think the issue of gut health is one area that we tend to overlook. Without a healthy gut and proper gut permeability, the oral supplementation and absorption issue will interfere with the protocol recovery mechanism. All supplemenation is...
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    B-12 - The Hidden Story

    Interesting site on Methylation and Enzymes and suggested supplementation, many of which we are already familiar with http://www.enzymestuff.com/methylation.htm
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    B-12 - The Hidden Story

    hi Jerry, I am replying a bit late, but just want to encourage you. I felt severe nausea early on in the protocol. A nausea that I have never felt before. I was also "off-center" for around 6-8 weeks, meaning that my center felt off to the side when i walked or stood upright. I could not stand...
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    B-12 - The Hidden Story

    hi Rich, Yes every conceivable liver test has been run (copper, Wilson's, even some very very rare disorders). I am taking many of the Freddd protocol supplements right now. I don't have CFS, but had a major b12 deficiency crash that put me down several months back. I am doing much better on...
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    B-12 - The Hidden Story

    Rich, other than P5P/B6, what are some of the other supplements (of the top of your head) that could be used to speed up the flow through the transsulfuration pathway?
  23. D

    B-12 - The Hidden Story

    Rich, are elevated liver enzymes (AST, ALT) directly related to methylation disfunction? I have not come across this in the literature. I have had mildly elevated enzymes for the last 5 years (when the b12 levels were in the process of eroding). ALT roughly 70, and AST at around 50 to 60. For...
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    B-12 - The Hidden Story

    hi Freddd, mine was around 5-6 years. Its amazing how the social network collapses without one seeing it. I have brought this up before, because I think it is a signficant issue for those of us who do not get immediately diagnosed and/or go through the slowly diminshing b12 levels (year after...
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    B-12 - The Hidden Story

    I also agree on this 1000%. You don't realize it, and it occurs very slowly. It is like putting on a pair of glasses, and the clarity can be quite a shock.
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    B-12 - The Hidden Story

    hi Freddd, I get mine from University Pharmacy as well. If you need any input on my batches pls let me know. I notice much less acne with these Univ. Pharm. batches (20mg/ml) then with the McGuff batches (5mg/ml). With the Univ. Pharm. batches i inject 40.0 units (8mg), 3 times a week.
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    B-12 - The Hidden Story

    hi Rich, Freddd, thanks for the responses. Now the big question: There is no established "RDA" for SAM-e. For b12, I know that I am clearly mega-dosing relative to the b12 RDA, given how low it is. Do you know if 400-600mg of SAM-e is relatively a high dose? (ie, is the typical amount of...
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    B-12 - The Hidden Story

    hi Freddd, Yes i agree. I'm just not sure if directly supplementing SAMe and then having it measured is a valid test. I was thinking that taking SAMe and then measuring it, would greatly elevate it. Just guessing based on how we know b12 supplementation/injections work relative to serum b12 tests.
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    B-12 - The Hidden Story

    hi Freddd, Rich, Forgive me if I am off on this, but I am a bit confused. Wasn't the supplemention referred to above actually glutamine and not direct glutathione (which is difficult to do)? Glutamine gets tied into the whole glutamate excitotoxic pathways (the earlier posts that I sent out...
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    B-12 - The Hidden Story

    I am directly supplementating SAMe (400-600mg/day). Wouldn't this skew the results if I had the test taken, and if so, what is the recommended "dry out" or supplement fasting period prior to taking these types of tests. I would prefer not to stop the protocol for even a day , if possible.