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Input requested on possible changes to simplified methylation protocol

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by richvank, May 30, 2012.

  1. caledonia

    caledonia

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    The methylcobalamin/methyl folate in the Thorne multi greatly alleviates my MCS and I tolerate it well. So I'm all for the protocol to be based on that multi.

    Soy is still testing weak via muscle testing, so I would be leery of taking anything with that in it.

    I like the idea of Place's chart.

    Maybe you could have several versions of the protocol, and people could pick and choose based on their needs. I know that makes it sound more complicated.

    But something like an if/then chart - so if you can't take soy, do this. If you can't do a multi, do this.
  2. Nina

    Nina Senior Member

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    I'm not exactly a big success story (yet), so please take this with a grain of salt, but I'd like to add that for me implementing SAM-e was absolutely critical. That was the first time I actually noticed some improvement. I'm still completely bedridden but it has given me some quality of life back, and some muscle strength (although that is still a huge issue, I only do better at complete rest).

    I also feel like treating KPU/HPU when present is vital. NT Factor seems to help some as well. I still don't tolerate more than tiny specks of folates.

    Hope this might be of interest.
    Gavman likes this.
  3. drex13

    drex13 Senior Member

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    Rich,
    Do you have any concerns with the folinic and the Methylfolate in the multi competing for absorption since they would be taken together ?
  4. freshveggies

    freshveggies Senior Member

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  5. Freddd

    Freddd Senior Member

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    Hi Jenny,

    I just don't retain details in my mind on hundreds of people and keep it straight. So in a sense the current post is the instantaneous view I have, and I keep asking for the information I need. Also, the questionaire is trying to get a summary of essentially full information in one place in "standardized" form. It can tell a whole lot more all at once. It also lets me see the overall patterns of a person and perhaps you now. About 10% of the people, when I can see the whole pattern, clearly have something very different going on. Even amongst the 90% that have more or less the same universe have half a dozen different patterns. For instance, just very recently, the group with extreme responses to several supplements, and when applicable certain characteristic responses to benzos, along with anxiety. Dannbex named it "wired and tired" and that turns out to be a distinguishing feature and it is becoming very clear that there was something very specific going on that NOBODY on the internet, medical or research community had any practical understanding of or even recognition of the many details. It fits very well into the 4 different b12 deficiency and 4 folate deficiency patterns and so on, filling in a specfic hole in understanding. I don't know about you, but I'm used to looking at the same thIngs over and over, every time I add another understanding, everything else is re-evaluated in light of that. Without that I would never have identified all the different paradoxical folate deficiency patterns and the induced low potassium pattern and even how both at once can occur. I've been learning and debugging this whole business for 10 years and haven't stopped yet because of not being correct every time, lots of times. I keep trying to improve the tools and the understanding they can help produce. If nothing else it might help me understand why you haven't benefited and maybe find others with the same pattern and responses. Then we are getting somewhere. Whith a little luck maybe I would even be able to suggest posibilities of making it effective. Complex combinations are something research stinks at recognizing otherwise none of us would be sick with ME/CFS/FMS and look alikes.
  6. Jenny

    Jenny Senior Member

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    I'd be happy to respond to your questionnaire Freddd. One of my problems though is that my symptoms fluctuate hugely from day to day and from hour to hour, even when I'm not on any supplements and not being active or under stress. I have never, over 30 years, been able to clearly link good or bad symptom changes to anything that I'm doing. So because my baseline is so variable, it is impossible to easily assess the effect of any treatment.

    Jenny
  7. Gavman

    Gavman Senior Member

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    I found the same thing. From what i can see, it seems common in people who run off adrenaline and are anxious alot that their neurochemical levels drop. SAM-e made a big difference in my energy. Methylfolate is finally getting my red blood cells shaped properly (I'd assume anyway, my skin color is ruddy instead of pale now and i think my circulation is improving)
  8. Freddd

    Freddd Senior Member

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    Hi Jennuy,

    Thankyou. That was very helpful. I'm going to modify the questionaire to capture that variablity. That is something I have recently been struggling with how to chracterize. I have founsd some situation in which a nutrient or drug can cause a sequence like A>B>C untill it reaches serum peak and then a completely different sequence Z>Y>X on the way down in serum level. So it might be relief of symtoms > anxiety > panic on the way up and anger > rage > massive depression on the way down, all within completely normal ranges of food or supplemnts or doses of drugs.

    In form, does that appear like something you experience?
  9. Freddd

    Freddd Senior Member

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    Hi Nina,

    The SAM-e is a critical factor for a lot of people. It's an important clue for your healing.

    I want to say here that I really like the new "persoanl conversation" mode insterad of messages since it allows me to have a specific posts by specific people and nothing else making it difficult to find the information on one person I'm looking for. Thankyou for this very helpful change.
  10. Jenny

    Jenny Senior Member

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    Impossible to say Freddd. I can't link any supplement to any symptoms because of my highly variable baseline.

    Jenny
  11. madietodd

    madietodd Senior Member

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    Hi, Rich,

    I love that you keep trying new things, evolving your protocol as new information arises.

    I did your protocol as written for 9 months, and other than a huge very temporary boost right at the beginning, I got no benefit. You recommended switching out the hb12 for mb12, and I did that, but benefits were small and temporary.
    I switched to Freddd's protocol a few months ago, which has also not helped my energy at all.

    My results from Amy Yasko indicate that hb12 is appropriate for me (sigh), and I just noticed that SAMe is recommended. So.....I'm interested in your new ideas, and in this conversation.

    I'm off all supplements ATM, as I've just spent a month recovering from an extreme gut reaction to L-Carnitine, so maybe I'll do a fresh start with your new protocol.
  12. Freddd

    Freddd Senior Member

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    Hi Madie,

    Can you describe the extreme gut reaction?
  13. Freddd

    Freddd Senior Member

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    Also, when the effectiveness of mb12

    "runs out" it is usually an induced deficiency or missing item or combination. Combinations are very important in keeping the healing going.
  14. Freddd

    Freddd Senior Member

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    Hi Jenny,

    I didn't mean linking it to any specific item.. I meant do you have repeating sequences like that in any of these things?
  15. SOC

    SOC Moderator and Senior Member

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    Rich,
    I'd have to think carefully about the Free Aminos. Several components have potential difficulties for some PWME.

    5-HTP can be a problem for PWME already taking serotonin-boosting ADs for sleep or pain. They have to be careful that they're not increasing serotonin to the point of developing serotonin syndrome.

    Glutamine converts to glutamate in the brain (I think). Glutamate is a problematic excitotoxin for at least some PWME.

    Increasing arginine consumption is usually not recommended for people with herpesvirus problems. As I understand it, arginine supports herpesvirus replication, so taking arginine above ordinary dietary amounts could be bad for PWME who already have problems maintaining herpesviruses in latency.

    Phenylalanine is another amino acid that can give PWME problems. It can interfere with serotonin production, although I don't know how much is needed to do that. It is also suspected as being at least one of the problem-causing metabolytes of aspartame, so people who can't tolerate aspartame might also have problems with phenylalanine.

    I don't know what proportion of PWME would be affected by these issues, or how big the problems might be, but I thought I'd toss this out for your consideration. :)
  16. Marg

    Marg Senior Member

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    I see nothing to indicate that the soy is not GMO. I see so much of it here, beautiful deadly fields of soy, corn and cotton. Not a weed or a pest..pesticide in the seeds and Round-up ready. It is very hard to avoid, hope CA can get the ball of labels going.

    I have not had any trouble taking any of the supplements, I feel much better but methylation tests do not show better. I am ready to try a new approach. Someone asked timing I think 2 and 1/2 years or more for me now. Yes, think it was the first part of November I started.
  17. Jenny

    Jenny Senior Member

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    As far as I can tell, I don't.
  18. Freddd

    Freddd Senior Member

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    Hi Rich,

    I am seeing problems here. I am now receiving reports of glutathione "detox" and/or NAC "detox" and possibly paradoxical folate deficiency, from the glutathione in General Vitamin Neurological Health Formula and/or NAC in MethylMate B and/or folinic acid and/or folic acid in General Vitamin Neurological Health Formula.

    In a specific person where I have received sufficient detail there also appears to be possible increased CNS neurological damage. I think that the glutathione and NAC are far more dangerous than you do. I agree with the researcher I spoke with that said "There is no way to safely take glutathione."


    1. General Vitamin Neurological Health Formula: Start with ¼ tablet and increase dosage as tolerated to 2 tablets daily
    2. Hydroxy B12 Mega Drops: 2 drops under the tongue daily (2,000 micrograms)
    3. MethylMate B: 3 drops under the tongue daily (210 micrograms of methylfolate)
    4. Folinic acid: ¼ capsule daily (200 micrograms)
    5. Phosphatidyl Serine Complex: 1 softgel capsule daily (500 milligrams) (or lecithin,
    1200 milligrams)



    DISCLAIMER

    I am a self taught systems analyst and consultant. I am not credentialed, certified or licensed to do anything besides drive a car. I have been disabled by the disease processes being discussed and affecting neurology in a multitude of ways for 10 years and impaired in a variety of ways and levels for 54 years before that. Everything I say is my opinion, synthesis, understanding or otherwise of my own creation except direct attributed quotes. Approximate paraphrases are also my interpretation of what I have read. All of this is at best my data analysis, understanding, synthesis and hypotheses and not to be construed as medical advice. I am not responsible for anything you do with any information provided in any way. Anything you do is your own responsibility and at your own risk. There are no published peer reviewed studies backing up my opinions or statements, except the incidental ones quoted or implicit in my synthesis or understanding, and then only in so far any reading of such papers may confer. Your interpretations, actions and variations of what I say are strictly at your own risk.
  19. Freddd

    Freddd Senior Member

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    Hi Maddietodd,

    I'll tell you what I know if that will help, mostly from other people's experience because aside from energy I had no reaction to LCF at all.

    When there has been an effect on intestional issues, L-carnine fumarate has relieved constipation. When there was too much the person can have diarrhea. Some people have the LCF start the healing response and then low potassium effects can happen including intestional paralysis. In taking potassium, too much potassium chloride without enough food and water produces severe watery foul smelling dark diarrhea and can cause intestional damage if too acid. I much prefer the potassium gluconate after trying the chloride and having that very problem fiding the upper dose limit the hard way.



    DISCLAIMER

    I am a self taught systems analyst and consultant. I am not credentialed, certified or licensed to do anything besides drive a car. I have been disabled by the disease processes being discussed and affecting neurology in a multitude of ways for 10 years and impaired in a variety of ways and levels for 54 years before that. Everything I say is my opinion, synthesis, understanding or otherwise of my own creation except direct attributed quotes. Approximate paraphrases are also my interpretation of what I have read. All of this is at best my data analysis, understanding, synthesis and hypotheses and not to be construed as medical advice. I am not responsible for anything you do with any information provided in any way. Anything you do is your own responsibility and at your own risk. There are no published peer reviewed studies backing up my opinions or statements, except the incidental ones quoted or implicit in my synthesis or understanding, and then only in so far any reading of such papers may confer. Your interpretations, actions and variations of what I say are strictly at your own risk.
  20. dannybex

    dannybex Senior Member

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    Hi Freddd,

    Since this thread is about Rich asking for input on changes to his methylation protocol, can you redirect questions/answers on your protocol to one of your threads? I know you want to help, but in any thread it's so easy to go 'off topic', which seems to be happening here, especially since your protocol is so different from Rich's. :)

    Hi Rich,

    Just my two cents here, but I'm finding that less is more -- especially with all the methyl donors.

    I'm currently working w/ Christine Huebner and just taking manganese, b2, b12, and coq10 -- in tiny amounts, relatively speaking. That's a fraction of a capsule or tablet divided into 4-5 doses per day. 2 months ago I could barely walk to my kitchen, let alone stand there to cook or clean up after cooking. I've had to depend on friends/family to help me get to the grocery store, etc., when I used to be able to walk the 3-4 blocks to the store. Admittedly I was pushing myself too hard to keep doing that over the past few years, but in hindsight my downhill trajectory started when I tried ALA chelation in late August 2009, and then the bottom dropped out when my ex-doc overprescribed the methylation supps back in October 2010. As you probably recall, I thought I was dying (for about 9 months), and lost 10-12 lbs in six months.

    But now, six weeks to 2 months since starting this new, more 'restricted' protocol, I'm finding times when my feet don't ache/burn with intensity and I can actually stand for a little longer, and can even walk a little more, and a little 'faster' at times. When I was walking (in a grocery store, for example, or even at home) I was walking very slowly, like a 90 year old man. This improvement started about 2-3 weeks ago, and comes and goes, but it does seem to be an upward trend.

    Maybe for some of us, it's more beneficial to proceed very cautiously, rather than force or push methylation to work properly?

    Regarding the non-methylation supps, I agree that the Thorne seems like a step in the right direction, better than the HH version, although again personally, I'm doing 'better' by avoiding ad-b12 for now.

    The NT-Factor, seems like it may have the problem that the HH multi does/could -- too many ingredients. Someone may be fine with most of them, but then highly sensitive to one or two of the herbs, which would make it a deal breaker. Just wondering if something like krill oil -- with it's antioxidant astaxanthin, and it's phospholipids -- might be a possible alternative?

    Just. My. Two. Cents. :)

    Dan
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