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Ammonia/sulfur issues or start-up...how does one know?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by mtayl2, Feb 18, 2015.

  1. mtayl2

    mtayl2

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    Hi All,
    I have read a considerable amount on this forum since 2010, but this is my first time posting. I am not good at asking for help, but its time I get over that hang-up. I am way overwhelmed these days and was hoping maybe someone here could help me???

    I will spare the details, but really quick: I am a 39 y/o male who got sick in 2006 after several years of exceedingly high levels of mental, emotional, spiritual stress. Felt like I got recurrence of mono one morning and its has never gone away...though the immune-ish symptoms are no longer the dominant ones.

    I have made several stabs at the active B12 protocol...Apr 2011- Jan 2013, Sep-Oct 2014, and I just started again about 10 days ago. Some background tid-bits


    -I "react" to the MB12 (1MG) and Folate (1MG)...major toxic brain fog feeling, mega hang-over feeling leading to swollen glad reaction. On my first attempt ('11-'13) I just got worse and worse until I was sleeping 15-18 hours a day with what felt like an endless redwine hangover without the party. More folate and or B12 did not help...the symptoms did not seem to align with low potassium.
    -More recently the start-up reaction (with all cofactors in place before starting), I had clear feelings of increased tingling, throbbing, burning etc (it was already starting after 2 months on just the co-factors) at sign of an old nerve entrapment injury 15 years ago. This along with slightly increased whine/ring in ears (like brain is buzzed up a bit...similar to when I started Effexor years back) indicated to me that this is start-up. Or might it just be inflammation due to increased excitotoxicity from sulfur/ammonia issues?
    -I am beginning to get some of the symptoms I have when I tried this a few years ago (toxic feeling in morning, tired/wired). Given my SNPs (hopefuly they will show in my sig line) and a hair test I had done for Nutritional Balancing Program where I was told I am a fast metabolizer with protein catabolism (body is using its own tissue for protein metabolism), I am worried that I may be ammonia toxic??
    -Amino Acids Analysis does not indicate high taurine

    Questions

    -My SNPs dont seem to be too bad considering others I have seen on the forums...or not? How does one know when B12/methylation etc is just not the issue or I need to keep cracking at it and working more methodically and patiently?
    -Does ANY reaction to B12 (even when most of symptoms are a toxic vice energizing feeling) suggest I need help here?
    -How does one know when we must increase folates doses to get out of deficiency or when its just a matter of healing not complete. For example, Freddd said it took several years to heal his gut, but gut issues are also a folate deficiency symptom? Likewise...increased anxiety is a start-up symptom but also a low potassium/folate symptom? When to keep titrating or when to hold? or when to say this is not ones healing path....?


    Current dose of DQ (plus all cofactors)

    -1,500mcg for Folate (titrated up since 6 Feb. No noticable reaction)
    -1,500mcg MB12 (titrated up since 9 Feb. More tingling and throbbing in shins and top of feet which had already begun when I started cofactors weeks earlier. Plus bouts of much brain fog and mental fatigue/slowing)
    -2000mcg ADB12 (titrated up since 16 Feb. Feelings a little “buzzy” in head...like too much thyroid med...less deep sleep and sweats during night)
    -855mg of Carnitine (started 17 Feb...more buzzy in head and caffeinate feeling)


    Ok...I fear this is too long already and I have many more questions. ANY help would be deeply appreciated…

    Kindly
    Michael

    ahmo, freddd, caledonia, dbkita
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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  3. mtayl2

    mtayl2

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    Ahhh... Thanks minkeygirl. Just learning ropes of posting.

    @dbkita
     
  4. Freddd

    Freddd Senior Member

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    One of the causes of out of control ammonia is a breakdown in the mitochondria-ATP end of things often seen in methylmalonic acidosis or carnitine deficiency. In the context it was mentioned, CblC disease adult onset, the problem is that there is a carnitine deficiency or AdoCbl deficiency making the malfunction in the lead up to making ATP and instead ammonia is made. This is part of the multi-system breakdown that comes with not having functional mitochondria. In the case of being of AdoCbl and/or carnitine deficiencies nothing else can possibly fix it, hence it would be totally stubborn. In some cases because in adult onset CblC disease there will be a 4 way block for each and every element of the deadlock quartet because they are all affected.
     
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  5. caledonia

    caledonia

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    Especially with the ringing in the ears, I'm thinking methylation might actually be working to chelate metals, but instead of them leaving the body, they're recirculating and causing the worsening of symptoms. I'm actually working through this right now.

    Have you done testing for toxic metals, such as lead and mercury, and if so, what were the results? Have you ever had mercury fillings? For your age, that's right at the tail end of leaded gas and leaded paint so some lead exposure could still have occurred.
     
  6. mtayl2

    mtayl2

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    I have done the Doctors Data Urine Toxic Metals test with pre and post test (challenge agent was DMPS). The only things above reference range post challenge were Bismuth, Cesium, Mercury (reference is <3 mine was 7.2 which is approx 1.5 standard deviations). Lead ref was <2 and mine is exactly 2. So not too bad. Then again, maybe this test has been deemed to be of less value than the urine collected for it. I dont know much about toxic metal tests. Thoughts?

    On my last hair analysis in Nov, only some aluminum and tiny bit of arsenic showed...no lead or mercury. I am doing a Nutritional Balancing (NB) program along with Freddds protocol and I believe my practitioner said that a lot of the heavy metals may not show on test until they are being moved out of the organs and tissues. That sound right to you? I am supposed to get them every 4 months or so, so will see if anything changes on next one which is due soon.

    I am curious, how do you discern between actual dumping of metals and folate/potassium deficiency? I am finally at a full dose of my NB supps (which are mostly cofactors for the DQ...so not working at cross purposes with supps, though I am philosphically/theoretically with the NB methods) and I have all of the DQ in place now. So, I can finally settle where I am with current doses and just work to titrate K and folate. The challenging thing for me though (and I suppose all of us to some varying degrees) is that in my 8 years of illness no two days in a row are the same. The symptoms are a constant moving target so teasing all of it out all the cause and effect is a real hemorrhoid. At least I am finally being more methodical this time.

    Thanks again for your comments,

    Michael

    PS...thank you for those videos on youtube. Lots more clicked for me with the science of Methylation for me after watching.
     
  7. mtayl2

    mtayl2

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    Forgot to mention...

    I have had amalgam fillings (maybe 5 or 6)...all but one is left. I was told at last dentist appt that it looked pretty good. Not sure if it is a good idea to remove. I gather there is much debate on the matter...
     
  8. picante

    picante Senior Member

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    Do you think that is what's bringing on the major brain fog for Michael when he takes MeB12 & folate?

    Given his current dosing, would you suspect that there isn't enough AdB12 and/or carnitine (or maybe the wrong kind of carnitine?:

    Michael @mtayl2, which kind of L-carnitine are you taking? LCF? Have you tried other kinds before?

    Note: I'm asking because I'm also having a heck of a time with the ratios. Not because I want to suggest any particular next step for you.
     
  9. mtayl2

    mtayl2

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    Thanks for reply Freddd. And thank you, thank you for the endless hours you have spent helping people you will never meet to overcome this diabolical affliction.

    I wonder then, in the absence of CblC...is this mechanism of ATP-Ammonia prevalent? My sense though is that if the CBS/NOS mutations had as much to do with sulfur and ammonia issues as Yasko has stated, you would be seeing more of it in your analysis and experience with folks. Not that it doesnt exist, but not as common as suggested, perhaps? As for me, I will know more as time on the protocol progresses. All the DQ and cofactors are in place as of two days ago. And today I seem to be manifesting signs of potassium deficiency (crampy muscles mid back, heart palps)...among possibly folate deficiency symptoms as well. This is encouraging to me.

    Have you seen folate deficiency and or potassium deficiency symptoms kick off for folks just doing essential cofactors, prior to adding any of the DQ? This seemed to happen to me...slight aching/throbbing in shins (old injury) restless legs, slight throb/sensation in teeth....all of which significantly increased after starting Mb12 and folate. Thoughts?

    Kindly
    Michael
     
  10. mtayl2

    mtayl2

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    @picante, Good questions, thanks for asking. I am very much wondering about the ratios as well. Thought I'd settle on this regimen for now and see what is happening in two weeks or so (I have a terrible habit of jumping, reacting, and popping more supps with every swing of symptoms patterns until I dont know whether to scratch my watch or wind my butt anymore....not fun). Will keep you updated.

    I am taking Drs Best LCF 855mg divided dose 8am and 10am. I have taken acetyl-carnitine with ALA in the past with minimal effect with acception of last time I tried it two months ago when it gave the standard brain fog...similar to first day on MB12 with folate, when taking too much NAC. The reaction that I mentioned above about the brain fog etc seems to be a first day or two reaction that then goes away. So maybe be just the shifting of neurotransmitters etc...esp dopamine.

    Good luck getting the balance right. Cheers

    Michael
     
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  11. ahmo

    ahmo Senior Member

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    @mtayl2 I'm in an internet cafe, my service is down, so I'm just posting a response, can't read this whole thread. Just to say I eventually tracked my ongoing and significant ammonia issues to 2 things. Looks like you've got plenty of comments re start-up.
    1) I found Both B2 and then B6, as P5P, pushed my ammonia way up. P5P at levels I'd been taking for a year. When I quit, the ammonia cleared after 2-3 days.

    2) I'm now following Martin Pall's suggestions re peroxynitrite. I've discovered that I've been functioning under oxidative stress for a very long time. I now know when I'm having that crash-is-on-the-way feeling, it's peroxy. Regardless of what pushed me to that place, there are some things that are helping. Anti-oxidants in general: Astaxanthin is what I've been using. Also reseveratrol. And more to the point, carrots is what's been working for me! Huge amounts. A couiple days agio I went from 1 large juice plus it's pulp plus additional carrots through the day, to 2 large juices + pulp + extra...more than 1 kg. Not only has it staved off crashes, ammonia symptoms, but I'm suddenly needing less of my sup[ps, particularly minerals, including potassium (!), as well as less of royal jelly, which was working for mast ce4ll activation.

    Something about carrots...I'm turning a bit orange, each time I've done a search about that, I've found no danger, just statements that it would pass when the intake slows. I'm currently in hi-stress situation for body, purging Candida, SIBO, plus active in the world. Not worrying about Vit A and liver, as I'm doing coffee enemas daily for the purge. OK, enough for today.
     
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  12. skyebean

    skyebean

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    Okay so... I have noticed that each time I 'overmethylate' the niacin works less and less..... I have gotten to the point of taking copious amounts for weeks at a time. Each time it gets worse. This past time my brain fog got so scary, and something clicked in my mind about ammonia. Also, I had been noticing a dull ache in my liver. So, I ordered milk thistle, and started drinking a ton of lemon water. Within 12 hours (before I got the milk thistle), my stubborn symptoms (including higher than 98.6 degree body temps) all came right down. A couple of days later I started to go up again (I can't remember what I took), and the lemon water brought it down again. I wasn't going to ask about it here unless I more evidence, but I think maybe I might be understanding this a bit more.

    I have BHMT 02 and 08 +/+, and CBS A360 +/-.

    I have done the sulfur protocol, but that hasn't stopped this from happening.

    When I'm in a state of 'overmethylation' I can't take anything, can't drink herbal tea, can't take most of my supplements without going over, and even when I heat up from exercise, it kicks up my methylation.

    So with those mutations, maybe it's not sulfur, but only ammonia?

    I feel my best right before I go 'over', and right after I come 'down'.

    Also, I still seem to be healing through the roller coaster ride. At my worst, a few situps would knock me down for a few days. Now I'm taking a restorative yoga class, lifting weights (carefully), and taking a Zumba class. I still can get knocked back by extreme stress, though.....still not sleeping through the night most nights. My moods, on the whole, are better...

    @Freddd, I've been slowly starting to digest your info, but my overmethylation symptoms have been so severe at their worst, I just can't take high dose methylfolate. But, I think you're saying that AdoCbl and carnitine deficiencies may be an issue with ammonia? I've been trying to also understand the deadlock quartet thing... I will keep reading..

    I guess for me it boils down to the fact that all of the supplements are helping (methlyfolate included), but I keep running into this wall that is decreasingly being helped by niacin....

    Does it sound like ammonia is the issue?
     
  13. ahmo

    ahmo Senior Member

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    Last edited: Feb 24, 2015
  14. skyebean

    skyebean

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    @ahmo Thank you for that new info! A couple of questions:

    After reading the link you sent - the recommendation is NOT p-5-p, but B6 pyridoxine? I have had a good response to the B6 (when not over-whatever I'm doing). It's been helping me sleep.

    So, it makes sense that when I take too many methyl donors they're being diverted into ammonia because of my CBS and BHMT mutations?

    I was taking hydroxy b12 at one point, but didn't notice a difference. My daughter prefers that, and she has CBS A360 +/+, and BHMT 02 and 08 +/-, and has a rise in body temp with too many methyl donors. I was only taking 1000 mcgs at a time. Is that a high enough dose to soak up NO? I never have any negative reaction to b12, no matter how much I take.

    I am definitely going to try astaxanthin. I read the Amazon reviews, and quite a few people said it helped their eyesight. Mine has really quickly deteriorated in the past 2 years, and has felt totally related to my health issues. I'm going to check that out. I was hoping NAC/liposomal glutathione might help with that, but I am happy to add another antioxidant.

    I'm going to watch the video, and see if I can wrap my head around this new info. Thank you again for posting it.

    I wonder what it is about carrots.....

    And - increased ammonia increases NO, correct?
     
  15. ahmo

    ahmo Senior Member

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    I don't know. Since I've gotten onto Pall's protocol, I've been progressing like with all my other protocols: inching my way forward based on symptoms, symptom relief, and self-testing my body. When I first saw his list, I added AdB12, body was enthusiastic. Since I've increased carrots, I've not tested + for additional AdB12, which I take once a week, per Fred's suggestion. So I can only suggest, try it. With folate, increases can lead to some discomfort, ie histamine type response. But if it's being bound up in a NO reaction...[​IMG]

    I've not had a chance to really go into understanding carrots. I just realized that maybe they're a good source of K=, and Na, since I've been using significantly less of them during this period...Here's some info, I've only glanced at it thus far: http://www.whfoods.com/genpage.php?tname=foodspice&dbid=21

    I can't answer that. I got to Pall by trying to understand the relationship between ammonia and peroxynitrite. I still don't really understand if there's a direct relationship, but my body seems to act as if they're the same substance. So Pall's supps are about decreasing peroxynitrite, which, I guess, results in an increase in NO. I wish my brain was better able to assimilate the science. But my body doesn't lie.;)
     
  16. skyebean

    skyebean

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    Oiy! I wish I could wrap my brain around it all, too... Thank you for sharing it with me, though, @ahmo.... It's really helpful. :)
     
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  17. mtayl2

    mtayl2

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    @amho, thank you for taking time to respond. I have been reading a bit about the ammonia/sulfur indications that Yasko points to (high taurine and several other things). I have scoured over all my old and recent labs and I have few of the indicators that this is an issue. I have been progressing along quite nicely last two weeks for the most part, so I am going to keep titrating up as signs permit. I think there are a lot of reasons one can run into backsliding on this protocol...ammonia being just one. I too have done some coffee enemas (2-3/week) but they sometimes seem to make things worse. I will keep trying as I hear good things from so many about their effectiveness.
     
  18. mtayl2

    mtayl2

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    @skyebean, I am glad you feel you are still healing despite the roller coaster. I have to remember that the bumpy ride is totally normal in the healing process. There seems to be some debate about whether or not there is overmethylation or not. I am curious, when you say "when I am in a state of overmthylation..." what indicates that for you?
     
  19. skyebean

    skyebean

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    @mtayl2 Well, for me the first indicator is my body temperature. Once it's over 98.6 I know I'm on my way to worse symptoms. If I let it go, my inflammation flares, I start to feel paranoid and really irritable, low motivation. When I first posted, I had only tried the lemon water a couple of times, but I've used it some more since then. It is working where niacin had stopped for me.....also, the dull ache in my liver is gone as well..
     
  20. avreed

    avreed

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    @Fredd. I have had worsening constipation over the last few years to the point where my digestive track is completely paralyzed. Cannot not have a bowel movement without laxative and have terrible malabsorption with probable gastroparesis as food sits in my stomach and moves very slowly down the digestive track. Initially, I had no problem with starting methylation and actually needed high amounts of sodium due to extremely low sodium and chloride on blood tests and very low BP which indicated adrenal exhaustion. Now, after a very protracted bout (3 months) of a virulent flu where my adrenals literally collapsed, the pendulum has swung the other way and I have high sodium with rising BP and complete gut stasis. My liver is so toxic that I cannot tolerate even homeopathic doses of BHRT which I really needed to keep my hormones on an even keel. My ammonia levels have been high on blood tests but not when on abx, which I can no longer take due to liver issues. My mother, grandmother and other women in the family have all died of heart disease before the age of 65. I'm 60 now and beginning to see my genetic heritage of MTHFR and other SNP genes play out in spades. My lifelong issues have been an extreme stress disorder, twice labeled as PTSD, but prior to menopause I was able to relieve this somewhat by intensive sports such as international downhill ski racing, world class sailboat racing, tennis, swimming, competition equestrian events etc. I'm now utterly house bound and cannot even answer the phone or have a conversation without going into a stress meltdown. I don't even recognize the person I am today and I'm terrified of what lies ahead. Just wondering if high ammonia and all the above you have written about could cause such intense problems and how I might get out of this quandary. Do you ever do private consultations?
     
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