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Which protocol?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by musicfreak, May 1, 2013.

  1. musicfreak

    musicfreak

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    Hi guys,

    I was getting ready to buy supplements to try the methylation protocol. I was going to follow the one on the main page at http://phoenixrising.me/treating-cf...e-mecfs-glutathione-and-the-methylation-cycle

    Then I came across this one:
    http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/

    Are most following the August 25 2012 revised one and why isn't a special note of this revision noted on Rich's main treatment page?

    I see he is recommending Folinic acid now instead of Intrinsic B12/Folate. I wanted to order all my supplements from Amy Yasko's 'Holistic Heal' site to save money from ordering on different sites and can't find Folinic acid there in the form of 5-formyltetrahydrofolate that Rich recommended. I only can find one with Folonic Acid.

    In searching for the form 5-formyltetrahydrofolate it seems calcium folinate is the same thing? Does anyone know a good source? I was planning on taking Neurological Health Formula so I'm not really looking for one in a multi.

    Amy recommended Intrinsic B12/Folate in her 'Pathways To Recovery' book. Is there an update on her protocol and is she still recommending it?

    Please advise.

    Thanks,

    Cheryl
  2. musicfreak

    musicfreak

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  3. musicfreak

    musicfreak

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    For those who have hypothyroidism is it really bad to take 1 1200mg of soy lecithin a day? I'm just asking cause it's cheaper than egg or sunflower. I do avoid soy normally but wondered if taking this one capsule a day would be bad. I feel I should avoid it but have to watch my budget too being I'm on disability.

    Thanks.
  4. Lotus97

    Lotus97 Senior Member

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    Are you referring to goitrogens? I'm not 100% sure, but I'd assume soy lecithin is mostly just lecithin and doesn't have what's normally in soy. If you want to save money, you could also buy lecithin powder rather than capsules.
  5. ahmo

    ahmo Senior Member

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    Hi Cheryl. I've been on the forum for maybe a year and a half, actively participating for about 9 months.. I was v impaired and v confused at that time. I started w/ Rich's SMP, and was reading as well Freddd's protocol. There seemed significant differences. Then at the beginning of this year Freddd posted his new revised protocol. http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/

    I read this over many times, and then started implementing it. I've had fantastic results. Not folinic acid, but methylfolate only. Not hydroxyB12, but methylB12 + adenoB12. And L Carnitine fumarate (LCF), not ALCAR. Each of these items of Freddd's "Deadlock Quartet" have been v significant for me. Such that I now tend to concur with him, at least in my case, that the inability of my body to manufacture or utilize these substances in other forms is at the core of my illness. I agree w/ Freddd, that RichVanK was in experimenting and analyzing mode, along w/ Freddd, to work this out. There were some suggestions that Freddd's condition was so outside of the norm, that his protocol is idiosyncratic. This kept me from trying his protocol for a long time, unfortunately. I started with small doses, and still am using relatively small doses. Freddd and others might use/need v large doses. But Freddd is also v clear about the need to go slowly, and has offered many posts supporting this, and offering lists of symptoms of over-and-under methylation.
    http://forums.phoenixrising.me/inde...to-get-out-of-donut-hole-insufficiency.22614/

    I'm also following Yasko protocol, though not strictly, rather picking and choosing. I'm using high doses of zinc, molybdenum, selenium, + manganese, magnesium, low-dose lithium. Freddd was initially recommending Jarrow methylB12, until he and others found it to have changed. I started on this, then switched to Freddd's favored Enzymatic Therapies, which has fructose, even though I'm avoiding fructose. I, too, found this a better choice, and have not suffered from the fructose. One forum member posted about Webber B12, from Canada, which has no fructose, but is too complicated for me to get to Australia. Freddd's suggested a Jarrow methylfolate product made of brocolli, and other veggie sources. Again, I can't do this due to a sulfur intolerance. I'm using Nutricology quatrefolic, up from1 to 2 caps (1 mg)/day, in divided doses. Please note that there have been several instances of inaccuracies in Yasko's info, eg. glutamine does Not form glutamate, as she states, hydroxyB12 does NOT apparently provide what we need. there's at least another one, can't remember right now, but just to know that she's not infallible.

    These threads are very dense, I've had to return many times over to comprehend it. But it's been well worth it. I'm better than I've been for 10 years. I'm also detoxxing metals and bacteria presently, and this seems to be effective. I'm doing it very gently, not a huge detox protocol, but using chlorella and grapefruitseed extract, charcoal, aluminium caly detox as footbaths, to not impose all that on my gut. Underlying it all I've been on GAPS diet for 1 year 3 months. ok, enough for today. Best to you, ahmo
    Patrick* likes this.
  6. Lotus97

    Lotus97 Senior Member

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    It's really annoying when people want to debate which protocol is better. It's even more annoying when people want to trash Rich as you're doing now. Rich worked with countless people here and cared immensely about each one. And if by "experiment" you mean that Rich worked with Dr. Neil Nathan in conducting a largely successful study on CFS/ME/fibromyalgia patients using an older version of his protocol then I guess that would be correct.
    http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf
    [​IMG]
    [​IMG]

    This is from Dr. Neil Nathan who ran the study with Rich and whose CFS/Fibromyalgia patients were used:
    http://www.prohealth.com/fibromyalgia/library/showarticle.cfm?libid=16138
    The Project Went as Follows

    • I took 30 patients (none of whom were part of the first pilot project), all of whom I had treated with Dr. Teitelbaum’s program, all of whom had made some progress (ranging from 30% to 70% improvement) but were still not where they needed to be health-wise.

    • All had their methylation chemistry measured prior to the start of the supplements(3), and all took the supplements for the next 6 months, while we measured their chemistry and they reported on their health status throughout. All patients took exactly the same supplements.

    • After six months, we individualized the patients’ treatment program based on their chemistry results, and continued to follow their progress and monitor their chemistry.

    The Results Are Exciting(4)

    Several important questions are addressed and answered:

    1. First of all, do we find that fibromyalgia and chronic fatigue patients do, indeed, have abnormal methylation chemistry? YES

    The initial methylation testing showed that:

    • Every single patient had abnormal results.

    • The average starting value of glutathione in our patients was 3.2 mmol/L (normal being 3.9-5.5 mmol/L)), and the average starting value for SAM (S-Adenosyl methionine, aka SAM-e, the major methylator) was 218 mmol/L (normal being 221-256 mmol/L).

    • 83% started with low glutathione levels.

    2. Can we demonstrate that taking these supplements raises those numbers into the normal range? YES

    • After 3 months, the average glutathione level was 3.8 mmol/L

    • After 6 months, the average glutathione level was 4.3 mmol/L

    • After 9 months, the average glutathione level was 4.7 mmol/L, which represents a 47% improvement, and ALL patients now had a normal level.

    • After 3 months, the average SAM level was 227 mmol/L

    • After 6 months, the average SAM level was 238 mmol/L

    • After 9 months, the average SAM level was 241 mmol/L, with only one patient not up into the normal range.

    3. Does this rise in glutathione and SAM correlate with clinical improvement? YES

    We had our patients rate 5 important areas of function on a 1-10 scale. This included energy, sleep, pain, cognitive function (memory, focus, concentration, and “brain fog”), and overall sense of well being.

    We can demonstrate progressive improvement in all of these areas in most patients, over the 9 months of the study:

    Sleep improved from an initial score of 4.7 to 6.0, with 73% of patients reporting improvement.

    Energy improved from an initial score of 3.9 to 6.6, with 86% of patients reporting improvement.

    Pain improved from an initial score of 5 to 6.6, with 80% of patients reporting improvement.

    Cognitive function improved from an initial score of 5.0 to 6.3, with 73% reporting improvement.

    Overall sense of well being improved from 4.3 to 6.8, with 79% reporting improvement.

    4. How much better were our patients? A LOT!

    It took an average of 5 to 6 weeks before the supplements started to work, and we can clearly show that the longer patients stayed on this program, the better they got.

    • Not everyone got better, but the vast majority (86%) improved.

    • The average improvement was rated by our patients as 48%.

    • And notably, 27% reported so much improvement that they now felt essentially well! Several who had not worked in over 5 years were able to resume full-time employment without difficulty.
  7. ahmo

    ahmo Senior Member

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    Lotus, it is more than annoying to repeatedly come across your posts re Rich vs Freddd. I lost many months of healing by following that protocol. I have no idea what motivates your need to champion Rich. He doesn't need a champion, he WAS a champion and key to the progress made on these forums and in the ME/CFS community. Life goes on, and experiments go on. You seem to need to trash Freddd's protocol at every instance. It's not helpful. ahmo
  8. Lotus97

    Lotus97 Senior Member

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    I've never even said Rich's protocol is better than Freddd's (let alone trashed his). Not once. Not EVER. Nice try though. And I don't see any posts by Rich saying that he removed folinic acid from the protocol. Thanks for wasting my time. Unless you can find that post I ask that you edit your post to remove that misinformation about Rich's protocol.

    This is what Rich has said about folinic acid and why it's in the Simplified Methylation Protocol
    There was also a study done using folinic acid on CFS patients with Epstein Barr Virus (EBV)
    http://www.natural-holistic-health.com/cd19-blood-test-and-chronic-fatigue-syndrome/
    I wouldn't recommend the dosages they used, but for anyone who wants to read more information about the study it can be found here.
    http://www.ncf-net.org/pdf/UckunCFSCD19.pdf
  9. musicfreak

    musicfreak

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    @Lotus Thanks for the info on soy. I was thinking there was soy in lecithin but I see now how it's extracted from the soy bean. Thanks also for the study info on Rich's protocol. It's encouraging to see the improvements.

    @ Ahmo Thanks for your suggestions. I was looking for Freddd's protocol the other day (briefly mentioned on another thread) so thanks for the links and I actually came across that first link today but was too tired to read it but saved it. I was leaning towards Rich's protocol because I'm just more familiar with it and because I thought if you have heavy metal toxicity which I do that a lot don't tolerate the Methyl B12 form? So I was going to try Rich's first and then try Freddds if I had no improvement. This is quite a balancing act to undertake and I can see it will take a lot of trial and error. I've just finished Amy Yasko's book and probably will take a couple of her suggestions too.

    Take care.
  10. Lotus97

    Lotus97 Senior Member

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    Rich has talked about that in the past, but I'm not sure he was entirely convinced based on what he said. If you have metal toxicity though methylation in general will release metals so increasing methylation too much would cause problems. Hydroxocobalamin uses up methyl groups to a certain extent which can be a good thing or a bad thing depending on how much you want to increase methylation and whether you have an SNPs that make you prone to over or undermethylation. Rich actually recommends starting with hydroxocobalamin and a low dose of methylfolate (the dosages used in the study), but if you don't improve he recommends switching to methylcobalamin and adenosylcobalamin and also possibly increasing methylfolate
    http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/
    Based on what Yasko says about your SNPs you might be able to tolerate methylcobalamin, but due to your underlying health conditions it might be good to start with hydroxocobalamin and then transition over to methylcobalamin once you've settled into your methylation protocol. Yasko just posted this a month ago (March 2013) which gives guidelines to what type of B12 is suited for which SNPs. It's important to consider the paragraph below the chart. What Yasko, Freddd, or Rich give are just guidelines. You have to figure out what works best for you.
    http://www.scribd.com/doc/132017201/Dr-Amy-s-Simplified-Road-Map-to-Health
    [​IMG]
  11. ahmo

    ahmo Senior Member

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    Lotus, You've pointed out a discrepancy in my own understanding. As many times as I read the SMP where Rich referred to removing folic acid, and it was then listed as folinic, my lyin' eyes believed he'd eliminated folinic but it was still in the list. As I considered this yesterday, I recalled that I'd been using this protocol for a number of years prior to participating in the forum. I'd been using folinic acid and hydroxyB12, and it never helped. Fast forward some years, after I'd eliminated all supps beginning GAPS diet, I began the methylation research. Again I tried these supps, and again they did nothing for me. No wonder I misread removing folic acid as removing folinic. I was put off Freddd's protocol by the claims that it was only his particular profile that it worked for. But when I finally implemented it, each component has helped me enormously. This has made me especially sensitive to this issue. The question of this thread was re differing protocols. That's what I addressed.

    As I said, At Least In My Case. And re Rich still analyzing, In his final August 2012 SMP post, he wrote:
    I will correct my post re folic/folinic and Rich. You might consider your role as well. This is not the first time I've seen you appear to discount Freddd's protocol. cheers, ahmo
  12. Freddd

    Freddd Senior Member

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    Hi Musicfreak,

    The choice is that any SIMPLE interpretation is not going to work. Further HyCbl and folic and maybe folinic acid, while there may be some improvement possible for some people as a whole you won't likely have any major improvement no matter how long and what variations and what secondary and tertiary theories you choose. While Deadlock quartet are not the whole answer, and every body MUST customize and learn to read intermediate situations and make adjustments, there is a substantial chance of substantial recovery for those who don't have large confounding co-morbidities. What hypothesis you believe in will largely determine whether you can get well or not. The active b12 protocol is pragmatically based on what does work in a sizable percentage of people. Treating to test results normed on a population that is chronically deficient in active b12s and folate doesn't work and based on gene theory so far predicts years of struggle and getting nowhere and remaining ill. Choose wisely.
    Victronix likes this.
  13. musicfreak

    musicfreak

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    Thanks Lotus for the B12 chart. That's really handy. I have to read the rest of that link you provided.

    Freddd Thanks for your advice. I'm still deciding what to do and still have to read the links about your protocol that Ahmo provided. I was thinking of trying other B12's first before methyl. I need to do more research and figure out what's best for me.

    Thanks.
  14. Red04

    Red04 Senior Member

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    Lotus,

    You have argued with me, freddd and probably a dozen others about the protocols and you are always on the same side of the argument. Please don't act like you are neutral in your opinion about which protocol people should try. You post on 95% of every single thread on here. Rich's protocol hasn't healed you, why do you always feel the need to post about it? It is annoying. It would be one thing if you were cured or mostly better from his protocol, but you're not. What is your motivation to promote it? And you have tried to point out the flaws in taking the supplements on freddds protocol and alluded it to being a drug addict and chasing a high. So technically you never said it was better. But you post over and over the flaws in freddds and promote richs. I dont think anyone here hasnt got the impressipn on where you stand. And you haven't tried freddds protocol.

    Ahmo comes on here and says they tried rich's and it didn't work. They switched to freddds and are getting wonderful results and you pick a fight with them. And then you get defensive about it.

    If you want to help people keep your opinions to yourself and talk about what worked and didn't work for you.
  15. caledonia

    caledonia

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    No wonder, you need to use the most active form, methylfolate (either alone or in combination with folinic acid). HydroxyB12 may or may not work well for you. You may need to use the more active forms methylB12 + adenosylB12.

    My impression of Freddd is that he advocates large doses and pushing through startup symptoms, not small doses. This is where I disagree with him.

    However, he's done excellent research with finding the most active forms of vitamins to take and this is very valuable information.

    The bottom line is - There is no one size fits all methylation protocol, and everyone will have to do research of all the protocols, plus testing and experimentation to find out what works best for them.

    I suggest learning self muscle testing to assist with finding what supplements you can tolerate and what doses to take. This has been an invaluable skill for me to manage my methylation protocol.
    Patrick* likes this.
  16. Lotus97

    Lotus97 Senior Member

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  17. dmbv

    dmbv

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    i am new here but have been reading for quite a while.....i had my 2 daughters on basically fredd's protocol or a version of it with lots of mb12, thorne basic b, multivitamin with more 5mthf, plus added 5mthf....they seemed to feel fine but when doctor ran their homocysteine (serum) they were very low...3 or 4!! i ran 23andme and one was comt +/+ vdr taq +/- other was comt +/- with vdr taq -/-...both had cbs 360 A +/-......they never felt badly but i felt both were over methylated ..we dont know what to do now...i have put them on some adb12, some hb12, and the only mb12 they get is in a b complex which i have now run out of..this b complex has 400 mcg of 5mthf...any ideas? i know homocysteine is not the most reliable but being that it was so low it was hard to ignore..finances dont allow more extensive testing at this time...any thoughts anyone...thank you all i appreciate reading your posts!
  18. Freddd

    Freddd Senior Member

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    HI Caledonia,

    Your opinion of what I advocate now or within the last few years, and what words are considered out of context and all, however it has happened to form a version of what you think I have suggested or advocated that had little actual resemblance to what I have said and advocated when you read it from what I have said and apparently fail to realize that something specific for one person on their circumstances are going to be different from another person with different specifics.I see you repeating things people repeated out of context 5 years ago. Further I have stressed USING INTELLEGENCE and finding the pattern of the way through various reactions rather than a stupid and bullheaded push their way through. I am incredibly tired of that one and people keep insisting on it for years. It is not now and never was true.

    I also advovate titrating over and over again to find the right dose by effectiveness. I advocate neither high nor low doses, but rather the effective dose for that person.
  19. musicfreak

    musicfreak

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    Thanks for the testimonials Lotus!
  20. caledonia

    caledonia

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    I've read your protocol. http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/ It doesn't say anywhere about starting with very tiny doses. It warns about startup effects (which can only come from too large of doses). There are also many people who are having these startup crises. If people were finding this information about titrating doses, then these problems wouldn't be happening.

    How do you titrate a sublingual methylcobalamin capsule down to 0.5mcg? That's how low I had to start.

    You may think that you're communicating about titration, but it's not coming through. The problem, as I see it, is two-fold.

    First, you have a very convoluted communication style that's hard to decipher. For example, look the paragraph you just wrote me above. The first sentence is a run-on sentence with 86 words in it! This only serves to make a complicated subject even more complicated.

    The second problem is your recommendations are scattered over thousands of posts. Nobody is going to be able to read all of those to find hidden nuggets of information. It would be really, really helpful if there was a well written, concise version of your protocol in one place that people could refer to - something that you would be able to edit and revise as you learn more. I'm sure if you could get it together, the Phoenix Rising staff would be happy to make a page for you, similar to what they did for Rich.

    I suggest working with someone who is good at technical writing and organization to get this done.

    Freddd, I'm actually on your side. I want to see your great information and insights get out there in an easy to understand manner that benefits the patients. I think everyone can benefit from methylation, but your poor communication skills are a barrier.

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