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Overwhelmed by the many protocols ; the pros & cons of each etc.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by chipdouglas, Jan 21, 2014.

  1. Hello all,

    I've managed to get my 23andme results before the FDA ordered 23andme to stop offering new customers health-related genetic results. I ran the raw data through : Genetic Genie, Promethease and MTHFR support.

    My homozygous (+/+) mutations are :

    • MAO-A R297R
    • ACAT1-02
    • MTRR A66G

    My hetorozygous (+/-) mutations are :

    • VDR Bsm
    • VDR Taq
    • MTRR A664A
    • BHMT-08
    • CBS A360A

    I also have an heterozygous (+/-) mutation of the MTHFR C677T.

    I've looked at :

    http://www.heartfixer.com/AMRI-Nutrigenomics.htm as well as the Phoenix Rising forums and this place : http://www.knowyourgenetics.com/ and completed the Methylation Pathway Analysis.

    I've read concerns over possible hypokalemia through re-opening certain pathways - it's not clear to me how frequent this is and which pathway are more likely to bring this about. Also, it's not clear whether Dr. Amy Yasko has raised this concern about serum potassium values dropping into hypokalemia range - which if accurate, is a significant concern.

    Much of the confusion also arises from the many protocols available and where to find the most up-to-date versions of each and whether any of those protocols have proven more effective relative to one another. Like any protocol meant to address any disease processes, it implies a trial & error period - that's a given. That being said, I've found the process of «getting started» with addressing my genetic weaknesses to be just overwhelming, because of the lack of clarity as to what one should do. Now, Dr. Yasko provides a step-by-step guide (NRI link above) as to what should be addressed first and so on and so forth. If there were no debate over her protocol, things wouldn't be so overwhelmingly difficult, but as things stand, there exists other protocols and some debate over which to use. I've also come across two «simplified protocols» one from Dr. Yasko and IIRC the second one from the late Rich Van Konynenburg (God rest his soul).

    Another relevant issue is : what's been the success rate of these various protocols thus far ? That said, I also take into account the multifaceted aspect of many disease processes. Worded differently, addressing methylation alone might not prove to be sufficient for many with CFS. For the sake of clarification, I haven't been diagnosed with CFS/FM. However, I've been formally diagnosed with : ADHD and OCPD.

    There's been many such posts on here calling for help in making sense of the above mentioned issues. I'd be grateful if anyone with in-depth knowledge of the subject of nutrigenomics would be so kind as to help me make more sense of it all.

    Take care.


  2. Freddd

    Freddd Senior Member

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    Hi Chipdouglas,

    If a person succeeds in starting methylation and isn't deadlocked on ATP production or other lacks, hypokalemia is almost inevitable.

    However, we are speaking of a type of hypokalemia that is difficult to find by test. One person who ended up in the ER succeeded in having 3 tests that show the problem, in a matter of hours. Her serum level of potassium fell from 4.x to 3.2 in a matter of hours with an intermediate step. I have something happen like that when my "steady" serum potassium is below 4.3 during the daytime. I usually have a problem after 5 am. I usually take a bedtime dose of 300mg. (297 actually as they are 99mg tablets. Some are as low as 90mg. I guess that it changes category by round off at 100mg. Everything in the 90s is called 3%.

    As far as what percentage are actually cured and healed by those protocols you asked about, I have heard of the one person that is trotted out each time as the good example when the question is asked. There might be a few others. They talk about some degree of improvement in some symptoms for some percentage.

    I can't think of a way that any of the simplified protocols have a real chance.

    For that matter I haven't heard of any real success guided by genetic factors except perhaps to indicate you have some problems in a certain area.

    ADHD and OCPD is a tough one. I do not know of any successes of curing via any protocol. While you say you don't have a diagnosis of CFS/FMS, what are all the symptoms you have of those disorders. Do you suspect that you may have them?
  3. Thank you very much for your response Freddd. I'll respond in more depth in the morning.
  4. It'll be a few more days before I can respond in more depth, as I've been otherwise busy around the home.
  5. Hi Freddd,

    First of all, thank you for taking the time to respond to what was actually my first post on these forums. I also take into account that many similar posts have been made over the years, further reiterating my appreciation.

    The topic of hypokalemia induced through opening blocked methylation pathways is one I haven’t investigated at all. The only form of hypokalemia I’ve been aware of is that which affects serum values. However, I’ve been aware of RBC K+ which AFAIK seems to be mostly used in the field of integrative medicine.
    As far as I can see we’re talking rapidly fluctuating K+ levels. Personally, I’ve experienced occasional textbook borderline serum hypokalemia with little to no symptoms.




    As far as CFS/FMS are concerned, what I can tell you is that I normally have a healthy response to exercise, that is no post-exertional malaise. I don’t suffer with any myalgic pain, other than what’s considered to be a normal response to resistance training, especially for anyone who’s recently resumed a training routine. I do have cognitive difficulties but those are non-specific. My apparent lack of physical energy is actually lack of mental energy, which gets tremendously better when my mood brightens.

    I’m 41 and have been in the process of completing a bachelor degree in nursing (one more year to go before graduating) However, last year I’ve had to drop out of college because stress had become unmanageable. Six years ago, I was diagnosed with ADHD and GAD. However, I refused to start on a stimulant medication, because at the time I’d been experiencing PACs and PACs – those were benign, but they were nonetheless highly annoying. Since catecholamines are known to precipitate the above, I wanted to steer clear of any stimulants Rx. I didn’t want to make that issue any worse and in turn have to be put on beta-blockers, which have their nasty side-effects of their own.

    Last year, the Dx of ADHD was removed by the same psychiatrist whom had first made the Dx. He removed it on the grounds that I wouldn’t have been able to complete the first few years of the nursing curriculum. Also, I’d asked to be put on Adderall XR, which didn’t help me – Adderall caused me to become more obsessed and overly aggressive – but did nothing to help with increased productivity and motivation. He (the psychiatrist) substituted the Dx of OCPD for ADHD. I have to agree that it makes a lot more sense to me. That being said, he also mentioned that I do have many psychological traits of ADHD, but that I failed to meet the diagnostic criteria of which was then the DSM-IV (the DSM-V, as you probably know has been released months ago). I haven’t had the chance to peruse the DSM-V. Last winter I saw a neuropsychologist for a few months. Long story short, he said he wouldn’t rule out the possibility of adult ADHD. The real problem with mental health diagnoses is that they’re not objective as is allopathic medicine. What’s more, there exist a significant extent of overlap between various mental health diagnoses. I’ve studied my own case quite extensively and so far I do agree with the Dx of OCPD and comorbidities (depression being one that plagued me for quite some time).


    As can be expected I’ve been labelled lazy and what not. The various careless judgements made by unknowing people only add to the severity of one’s ongoing health issues. So the psychosocial aspect is without any doubt severely affected as well.


    I didn’t want to go on an SSRI, because I didn’t want to make the sexual aspects any worse. Not to mention that there appears to be low % of patients who experience post SSRI sexual dysfunction. I’ve looked at other modalities and here’s what I’ve found to be of significant benefit thus far (from most to least helpful) :

    1. http://mindalive.com/Products_DAVID_Delight_Plus.htm


    2. Phosphatidylserine + fish oil (as a source of fat)


    3. Vitamin C (Ester-C)


    4. magnesium glycinate


    5. zinc chelate and glycinate


    6. Milk thistle


    7. Brewed gyokuro and GTE – with GTE being more effective as a mood brightener.


    8. vitamin D3


    However, over the last two months, my condition has improved quite noticeably. I also want to point out that I haven’t been on any of the above listed supplements for months, with the exception of brewed gyokuro and/or GTE. I’ve also not used the AVS device (on purpose, since I didn't want to obfuscate the outcome of other modalities).

    I’ve been drinking loose leaf sencha for two years now so I don’t think I can attribute the recent improvement in my overall condition to sencha alone. However, about two months ago, I started drinking more gyokuro and less sencha, which has more caffeine than sencha. I’ve also started having coffee a few times a week both decaffeinated and caffeinated, though I have more decaffeinated than caffeinated. I mostly prefer green tea. I’ve tried L-theanine in supplement form but it doesn’t seem to do much for me – if anything, it seems to decrease my overall motivation – supplemental GABA also does the same (even though it doesn’t seem to be able to cross the BBB). I’ve also started taking gelatinized maca, but only occasionally.

    I’d suspect coffee to have helped because of this :

    http://www.medscape.com/viewarticle/750420?pa=mWdavkmvm6px1b+b/mfoJVBZEGJC3quLCo8Z4XWCIuRcxaRBIhIBTK+6FIfVbJyHmlcch6Xy9R3wHa8tUB/l+w==

    I'd also like to add that it's possible that increasing levels of physical activity in the form of short but moderately intense resistance training might be contributing factor in the recent improvement mentioned above. That being said, I have good reason to think this isn't the most significant component, because I did work out at many times during the last 10 years, but to no avail.
    Last edited: Jan 27, 2014
  6. Essentially, what I've been trying to find out (as this was perhaps not very clear in the above response) is whether there might be further worth/benefits (beyond what I've experienced from the above mentioned modalities) in attempting to bypass my homozygous mutations through working with Dr. Yasko's approach or that of another authority in improving methylation pathways.

    From what you're telling me Freddd, there's very little hope/worth in doing so in order to make OCPD/ADHD any better. This has also being my perspective on this issue, but I thought I'd run these types of question by the Phoenix Rising forums since these methylation issues have been discussed for quite some time. Mind you, the forus on these forums is in improving CFS/FM,.which are different issues than those I've had.

    Many thanks
  7. Freddd

    Freddd Senior Member

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    Hi Chip,

    What I am saying is that OCPD/ADHD are an unknown. I haven't been tracking them. Most folks don't mention them. I do know that some people with these have the symptoms intensify during deadlock quartet and that careful titrations are needed. As a few of the people I have privately coached do have these things but also have had very strong beliefs that are counter to the deadlock quartet and the extreme reactions they have, do not follow even a microtitration protocol sufficiently well to be able to give an answer.

    I think it would be worth trying, very carefully and with a local support person who can help with the complicated protocol and giving emotional and personal support during what is like to be a very trying time. I have not seen these without complicating factors such as limbic system damage that emphasizes anxiety. It really is quite unknown. I was trying to be realistic, precise and objective about it. If your body has a similar problem of getting cobalamin into the brain and cord as mine does, the amount needed for CNS healing, the doses are in a highly controversial and fear provoking range that will bring out the naysayers in massive force.

    On the other hand I have healed myself of FMS and CFS, have reversed about 70% of the Sub Acute combined degeneration I had, kept myself out of a wheelchair and incontinent, prevented my death my reversing congestive heart failure and basically restored myself to a normal life in 11 years from a complete near death 17 year collapse. 11 years ago that was totally unknown.

    And one other thing Chip, living in Canada can be a complication. You may need a doctors authorization to get the carnitine. Or make a shopping trip across the border.
    Last edited: Feb 2, 2014
  8. ahmo

    ahmo Senior Member

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    Hi chipdouglas. You might make some gains with the GAPS diet. There are yahoo forums, GAPSdiet and GAPShelp. There are many who have been dealing w/ psychological issues ranging from autism specrum thru OCD, ADHD who've benefited. GAPS = gut and Psychology. The name leapt out at me when I discovered it as I was spiralling downward. Once feeling the benefits from the diet, the help offered by the participants on, especially, the GAPSdiet forum, led me to gene testing. I'm doing "Yasko Lite", not pure Yasko. Once I accounted for the blockages in my methylation cycle, I started Freddd's Protocol in earnest. I can now see, as my genetic results indicate, that there was always a tendency toward ADHD, but I would never have described myself that way. But in fact I was distractable. I've found big benefits especially from the mineral supps, including a tendency to needing high amounts of K+ and Mg. This might be different for you w/o the MTHFR...oh, I see you do have this....

    Your MAO++ suggests there may well be histamine issues. This, in itself, is enough to affect your brain significantly. Re diagnosis, it's gotten a bit like counting the number of angels who can fit on the head of a pin. What really matters is your symptoms, how you feel, your experience. I was a psych nurse, I don't trust much of anything about that system. BTW, I've recently learned that GABA does cross when the BBB is leaky, which mine must be, as I have near immediate + results w/ GABA. What is your actual problem? What are you actually trying to correct? Your OCD? or something else? some histamine info linked below. Best to you, ahmo

    http://roosclues.blogspot.com.au/2010/03/overview-of-high-histamine-also-called.html
    http://thelowhistaminechef.com/dr-castells-interview-the-role-of-stress-in-mast-cell-disorders/ http://thelowhistaminechef.com/dr-janice-joneja-histamine-intolerance-interview-pt2/
    http://criticalmas.com/2012/05/the-low-histamine-diet/ food list

    ‪‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
    https://www.youtube.com/watch?feature=player_detailpage&v=9QbZp3WcC1Q
    ‪Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬
    http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ
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  9. Thank you both for the above responses. Unfortunately, it'll be days before I can comment, as something came up again.
  10. ahmo

    ahmo Senior Member

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    Hey chipdouglas, I just watched a really delightful movie, Vincent Wants to Sea, about someone w/ OCD, another w/ Tourette's, and a third w/ anorexia who befriend each other in a treatment center. A few years old, caught it online from an Aus tv site. You might look for it. ;)
    EMilo likes this.

  11. Hi again Freddd,

    While I don't know about your personal story (at least not in full details), I can definitely see/read that you've been to hell and back, literally ! It also looks like you did a very good job of straightening things out and saving your own life.

    Also, thanks for the above clarifying response. On the topic of L-Carnitine or ALCAR, they used to be off-limit in Canada, but as things stand they're available OTC. I checked and those products even have their NPN numbers, which means they've been officially approved of and allowed on the shelves in Canada. Back many years ago, when ALCAR was unavailable OTC, I'd ordered some from the U.S. and I can recall that it caused me to get quite agitated. I'm talking a product that contained ALCAR (500 mg) only.
  12. Thanks for the flick recommendation ahmo, but I'll have to pass. Don't get me wrong, the movie is most likely enjoyable, but as things stand, I (unfortunately) cannot allow myself to get sidetracked too much. I've had a full plate to deal with, plus I really have to complete my BSc nursing program in order to start making much needed $$. I'll get to your above response in a minute.

  13. Hi ahmo,

    The GAPS diet looks to be interesting and relevant. There certainly is such a thing as a brain-gut axis, as more research into the field of probiotics have revealed. Among other things, some strains lead to increased histamine, some are neutral while other strains lead to the degradation of histamine. The GAPS diet likely isn't about probiotics, but I merely wanted to share what I've learned thus far.

    I apologize for my late response - I've been very busy getting myself back up to speed with the demands of life. I've made some decent progress, but I'm certainly not out of the woods just yet. I really like that I have formal health care education as taught me to self-assess more so than someone without that type of training. You were a nurse (RN ?) yourself, so you know obviously know what I'm talking about. I'm with you with that thing about not trusting that system - I don't trust it either. The public health care system here in Quebec, Canada is in a true state of disarray. While the health care system down-under and in other countries is likely to be in better working order, the allopathic paradigm isn't geared towards true prevention of disease - then comes the medical dogma...oh well, you get my drift I'm sure. I could expand way more on these issues, but I won't as there's no point in doing so, since you've been around the block a few times yourself. Most MDs I know would think that we're spinning our wheels dealing with this methylation alternative subject. I can't quite blame them, because as you know there's quite a lot of pseudoscience out there. Since most MDs don't have the time nor the will to look into methylation, they'd just assume it is pseudoscience.

    I'll be searching Google and these forums for the «Yasko lite» program you mentioned above. Just so you know, I'm most definitely not new on the topic of dietary supplements. I've been scouring Pubmed, Wiki etc. for more than 10 years now. However, when it comes to fixing blocked methylation pathways, I'm certainly not an authority. Also, in my area, there's no one that I know of that could guide me through this type of process. I was actually thinking of going it alone for the most part. I usually prefer to take charge of these kind of things on my own - that's not to say that I won't listen to you or other folks with more experience than myself in this field. What I'm saying is I like to «learn» to do things on my own (which is also part of my OCPD personality disorder and yes this does create problems). Now in fairness, there are upsides to being this way too.

    Whilst on the topic of OCPD, I just want to emphasize that I haven't been diagnosed with OCD, which as you probably know isn't the same as OCPD. OCPD normally doesn't require any Rx, while OCD does, as it this pathological in nature.


    I agree with you regarding the histamine issue. Last year I took a probiotic supplement (I didn't know then as much as I now do on this topic, though I consider my knowledge to be basic at best) Primadophilus Optima : http://www.naturesway.com/Products/Probiotics/15652-Primadophilus-Optima.aspx which contains a good deal of the Lactobaccilus Casei which increases histamine and tyramine. As a result of this, my anxiety skyrocketed and I suffered a flare-up of my eczema. Also, since vitamin C has been of tremendous benefits, I have all the more reasons to think histamine is relevant to my issues. I'm also known to have varying degree of seasonal allergies and used to have mild asthma.

    What is my problem ? This is where it gets quite complex. While the initial Dx of ADHD has «formally» been removed, I certainly have many psychological traits of ADHD - this is what the psychiatrist has told me and I have to say that I agree, based on the DSM-IV diagnostic criteria. One of my nursing teacher once told me : ''Marc, you're a very intelligent man and that is what annoys other people around you, especially those who lack self-confidence.'' The funny thing, is I later got into a conflict with that very teacher, as I wouldn't tolerate that she spoke to me very rudely, as there was no need for her to do so. This is what happens when you're a student to teachers your own age and I'd add to that, that nurses are usually bossy (and so am I), but I don't think being bossy is all bad. That being said, some nursing teachers are overbearing and have attitude problems of their own. I don't like those abusing their power or authority and that can get me in trouble, as it pushes me button, but only if this involves me directly.

    As far as the nursing program is concerned, what caused me to drop out of the curriculum last year were stress and anxiety, coupled with lack of organisation skills. Mind goes blank under pressure, which reminds me of ADHD. That said, so can anxiety cause this. As far as mental health is concerned, we both know that there's a good deal of overlapping going on. By dint of experiencing moderate to severe anxiety on a daily basis for years, it's not difficult to understand how depression can be added to the picture. This is what's happened to me. Still on the topic of ADHD, a few of my nursing teachers have told me they disagree with the psychiatrist whom removed the Dx of ADHD and replaced it with that of OCPD. OTOH, Adderall XR was of no help, so I can understand that as far as clinical symptoms of ADHD are concerned, this is a relevant clue - that is, if Adderall XR doesn't do a thing and even makes one even more obsessed, then ADHD isn't so much a suspect anymore.

    One of my major problem is I have (as can be expected from being OCPD) quite a hard time shifting thoughts. I get locked in on an issue and can't let it go. I want to and see the relevance in letting go of it, but my mind won't let me. This is extremely annoying to say the least and I think it's easy for most everyone just how this can lead to interpersonal conflicts.

    Once more, many thanks for your input and help in this matter.
  14. SickOfSickness

    SickOfSickness Senior Member

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    Just a heads up, it seems MDs are more likely to say a someone in a medical field is having psychosomatic problems or other B.S. They are suspicious of anyone with medical training.
  15. Freddd

    Freddd Senior Member

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    I was accused of Its All In Your Head for decades as a health care systems analyst. I paid attention to every detail is detecting patterns that we might data mine for screening and preventive purposes or fraud or incompetence. We were out to get rid of the 1% worse providers every year in the plans we consulted for. I was told often that "You have too many symptoms to be believable". They are suspicious about anybody who knows lots of symptoms. I'm not sure why but part of it is that they only want to hear the top ten symptoms. They lose patience and are not going to sit still listening to 200 symptoms. The won't believe it and they certainly won't make the connection that the active B12/folate deficiencies can account for all 200. If they did listen they would feel like they have to come up with 10-20 diagnoses. Then there is the reaction of putting one of those canvas conference bags on the counter with a big "HELP STAMP OUT MEDICAL FRAUD" on it. It makes some docs very nervous.

    High resolution symptom tracking can tell a person an awful lot about methylation and ATP functionality. For the last half of the 100 docs I worked through I removed the possibility of treatment and interviewed them to see if they had any ideas. Then when they didn't have any new ideas or drug suggestions, just the same old stuff that had already failed several times and was just plain wrong, we could each go our way none the worse for wear. Without doing that they would just be making me sick with all the drugs that were already tried and side effected out of consideration and then have to kick me out for not being a cooperative patient. It saved a lot of wear and tear and expense on my part.
  16. EMilo

    EMilo Elizabethmilo.com

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    Sooo... I'm sorry to butt in on your conversation, but I recently started trying to address my CBS mutation through my own interpretation of Yasko's simplified protocol. I also started have been getting lots of heart arrhythmias and just had my serum potassium test 3.2. My doctor told me to eat more potassium foods (which in itself is hard since I'm on a low-histamine diet); she knows nothing about methylation or ME. Could someone explain the low potassium connection to methylation and how I might be causing it? Thank you!
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Have a look here.

    Sushi
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  18. EMilo

    EMilo Elizabethmilo.com

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    Sushi, you're a gem, let me see if I can figure this out. Thank you :)
  19. EMilo

    EMilo Elizabethmilo.com

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    Now I'm more confused because I don't take any folate or B12. All I've been doing is trying to deal with my CBS mutation which Yasko recommends before anything else. Maybe my low potassium has nothing to do with methylation and is from taking lots of magnesium (for constipation) and salt loading (for low BP). Wish I knew how to safely deal with it because, based on my heart, diet isn't working. :(
  20. ahmo

    ahmo Senior Member

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    @EMilo If you're taking "lot's " of magnesium and salt you're likely needing extra potassium. B12/folate push a need for extra K+, but even w/o those, you're in a position of likely needing more. Heart palpitations are my main sign for needing more. You can start w/ a salt substitute if you need something immediately. Potassium gluconate is really versatile as a powder. Also comes in tablets, highest dose 99mg. K+ chloride is the form used in salt replacement.
    EMilo likes this.

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