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After giving up on methylation for years, I'm trying again with some success. Help me keep moving!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Tom_Nightingale, Jun 23, 2015.

  1. Tom_Nightingale

    Tom_Nightingale

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    Dear everyone!

    I am happy to be able to say that I am finding some results after reattempting methylation supplementation! I am here to find out how to continue this by beating side effects I am now experiencing from "revving" my cycle.

    I have known about methylation and have had my SNPs since about 3 years ago. I'm male, 29 years old.
    Genetic Genie: http://tinyurl.com/ogjcxh6 Detox: http://tinyurl.com/olpxday MTHFRsupport full report (49 pages of SNPs): http://tinyurl.com/o893a8w

    I wrote here, maybe a year ago, that I was struggling with side effects and that the fear of feeling totally edgy or flat as a board was just too much to continue. But I enlisted the help of a naturopath trained in methylation genomics, and I've found a new approach (teaser: it's DAO) that has allowed me to "rev" the methylation cycle a bit and be able to tolerate it! Unfortunately, after many months and around $1000 dollars later I had to fire my naturopath for... I guess the best word is negligence... I'll explain, but the take away is that I am for the moment managing this on my own. Here's the rundown:

    I should first note I have psychiatric issues. Most of what I struggle with are psychiatric symptoms when trying to tweak my methylation. I'm on lithium, Seroquel (both of these at "sub-theraputic" doses) and klonipin. I suffer from nerves and edginess, and if I'm not on Seroquel I become psychotic. COMT and MAO A. I am not looking for advice on what to do about those meds at this time :)

    Skip further to the bottom for my bullet points if you don't have the time to read the whole thing

    For the majority of 2014, I was supplementing with:
    • 1 every other day of Seeking Health (Dr Lynch) B Minus (b complex without folate, without b12)
    • 3-4 x day of New Chapter Turmeric Force
    • 1 x day 1000mg grocery store brand Vit C
    • 1 x day 25mg zinc
    • 1 x day 2000 iu store brand Vit D (near the end of the year was reduced to 1000 iu, felt better I think)
    This is what I was taking under the supervision of my naturopath. Take note of what I was NOT taking anymore:
    • 2 x day 50mg P5P
    • 1 x day B Minus complex
    • 1 x day New Chapter Turmeric Force
    • Histame (here's the DAO. Explanation about dosing to follow below)
    It's a simple list. I felt my naturopath to be competent, so I followed her treatment plan to a T. This meant that if she didn't include previously used supplements, I assumed it was because that was part of the plan. I sought out her help at about mid February because I started to have a terrible time dealing with the unprecedented allergy season experienced here on the east coast of the USA (specifically the mid Atlantic where I live). She had me get a methylation report through MTHFRsupport.com, 49 pages of SNPs (you can find them in my signature and I will link at the end). She identified multiple homozygous DAO mutations, and suggested I try a DAO enzyme.

    But the complications of how my body reacted to DAO and the amount I ended up taking initially became extremely tough to deal with. My naturopath did not give me a dosing recommendation when she suggested I try DAO. Through my knowledge gained working at a supplement store I understood that digestive enzymes did their work in the gut, and that I would just expect some effect similar to something like Allegra, but perhaps with less side effects. So after trying 1 pill and feeling ok the next day, I tried 2. Then started to work my way up to what the bottle recommended (2 x meal, so 6 x day), because it seemed harmless.

    Long story short, I after 2 weeks on DAO (Histame) I had had a honeymoon period of great mood and improved functioning, but swung further into mania, bizarre thoughts and then to the precipice of panic.

    I have since stabilized. This took a long time, and I had some moments where I thought I was never going to escape a maddening pattern of nibbling on a slice of orange to counteract DAO, or to add DAO or an herbal tincture to reduce histamine. It was a dark time, but there was a positive takeaway: I had a change in my quality of emotional and mental state of mind. During this time I learned the importance of histamine in not only methylation, but mood/catecholamines. Despite the horrible journey out of the wacked-out histamine balance, I felt that lowering my histamine load had done something (read: free up my methyl groups) I could take advantage of.

    Unfortunately, my naturopath was unable to take advantage of this, and I felt like my time was being wasted, so I fired her. And here I am, back in charge of my sometimes fragile health. And the good news is that I am already experiencing success!

    Here is what I'm taking now:
    • 1 x day molybdenum (dose has changed, took too much to soon already)
    • 1 x day a nibble (literally crumbs!) of whole food B complex including folate and B12 (Innate B Complex)
    • 1 x day 1/8 Histame (so sensitive, I have to divide the capsules this small!)
    • 1 x day Dr Lynch's B Minus
    • 2 x day 50 mg P5P
    • Low histamine diet!
    I have found that if I keep the folate and B12 supplementation low, drink electrolytes with them and perhaps with molybdenum's help, I am further improving my methylation. I have CBS mutations so I have chosen that to be my first target. I experience better quality of thought, more pep, and better mood. I can tell though, that more needs to be done. Doing the same thing today doesn't bring as much of the effect that I had when starting this regimen 6 days ago

    Side effects of folate and b12 supplementation so far:
    • Edginess and agitation - can improve with electrolytes, extra P5P, or BCAAs to deplete serotonin and dopamine (though this can leave me numbed). I know that niacin can slow down methylation, but I have not used it to do so yet. I wonder if that's really better than these other options.
    • I think I now may be experiencing some of the droopiness or numbness that I've felt before taking folate. I also started molybdenum around the same time, and I hear that I can have a hard time with detox. That might be happening already
    So, to cap off my post...

    • What do I do next to improve my methylation?
    • I have my ideas:
      • Glutathione is the next item on Dr Ben Lynch's list of remedies for methylation side effects, what do I need to know if I am to try it? My naturopath told me that NAC should be taken with it. Why?
      • I am not taking vitamin D, but I feel it important. I have been deficient before (I havn't had a test done in some time). What do I need to know with my VDR mutations?
      • Zinc is missing from my "stack", and I suspect it would be good to have on board. What should I watch out for, if anything?
      • Copper - I am curious about a potential deficiency. I desire to take a blood test. I understand this can be tricky, what suggestions do you have? Anyone with experience?
      • L-Ornithine is the next item I have on my list to try, because of it's action of the urea cycle. What should I know as possible dangers?
    • What are your ideas?
    That's plenty right there. Again my SNPs are in my signature. Let me know if I can help any of you in any way, I have a lot of knowledge about psychiatric issues in general, meds, many herbs and supplements from having worked in a quality shop for a while!
     
    Last edited: Jun 23, 2015
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  2. Tom_Nightingale

    Tom_Nightingale

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    From Heartfixer:

    Ooops... I think this is going on.

    ALSO, does anyone know of a good ND who can treat me over Skype? They probably would want to see me in person, I live in Virginia if that helps.
     
  3. Tom_Nightingale

    Tom_Nightingale

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    And another thing to add: after doing more reading on Heartfixer, I've decided to add Low Sulfur Diet to my list of things to add.

    Anyone have experience with being on a low histamine AND low sulfur diet at the same time? I have a feeling I'm going to be eating the same thing over and over for a couple months... How did you go about it?
     
  4. TheChosenOne

    TheChosenOne Senior Member

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  5. Tom_Nightingale

    Tom_Nightingale

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    I just went to Google and opened up sharing to anyone with links, go ahead and try again
     
  6. TheChosenOne

    TheChosenOne Senior Member

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    Your methylation profile look quite good. Only MTHFR A1298C +/- might be important here, which may mean lower levels of BH4. You only have 1 MTRR +/-.
    Since your main cycle should work fine, the BHMT mutations (the shortcut) should't be an issue.
    You have a combination of COMT +/-, MAO +/+ and AHCY +/+. No wonder you have mood swings. What kind of B12 do you take? Have you ever tried hydroxycobalamin?
    SAMe should improve the effectiveness of COMT, but on the other hand it's also a methyl donor. Have you ever tried it?
    According to Yasko, a low phenol diet is advised in this situation. Did you ever try it?
    Additional info:
    You are MTHFS +/+ and +/-. This means that you have a hard time converting folinic acid into 5-10 methynyl THF.
    You are FOLR2 +/-, which is responsible for conversion of folic acid into DHF. The other FOLRs are good, which means that the conversion of folate to DHF shouldn't be a problem. What might help here is to eat a lot of leafy veggies.
    You have 3 MAT1 +/- and 2 MAT1 -/-. These are responsible for the conversion of metathione to SAMe. I don't know which ones are the important ones, but I guess this shouldn't worry you.

    NAC should improve the effectiveness of gluthatione. I can't take it because I get very bad fatigue from it. Just try it and see what it does.
    You have both VDR mutations. The report of genetic genie is wrong. GG apparently is the risk alele. There is a whole post about this on this forum. This means that you might need more vitamin D. This also leads to less production of dopamine, which lessens the burden on your COMT genes.
    Zinc can move heavy metals in your body (since it replaces these heavy metals). Zinc make you feel worse. There is also an important balance between zinc and copper, but I don't know much about it.
    Sorry, don't know anything about copper.
    Never heard about L-Ornithine.

    About your CBS mutation:
    Amonia generated by the CBS upregulation depletes BH4. On the other hand, BH4 is necessary for the generation of dopamine. This means that BH4 may cause mood swings, but a CBS mutation is somewhat countered by a COMT mutation. I don't know how this affects you since you also have VDR and ACHY mutations. Alcohol increases the activity of the CBS gene. You have the less important CBS mutation.
    There are people on this forum that claim that a CBS mutation is actually protective and the effects of a CBS mutation are rather minor. A drain on homocysteine may lead to lower SAH? I have no idea about it, but I have two +/- CBS mutations. I also have/had a candida infection. This combination might be the source of my serious brain fog. On the other hand I've never addressed this mutation and my brain fog disappeared by supplementing the other parts of the methylation cycle and chelation. I hope I haven't confused you :).

    I have COMT/AHCY mutations myself and consider myself somewhat bipolar (most online test come out as 'borderline' or 'positive'). I currently don't take anything for my mood swings, but they have improved in a serious way since I started using hydroxycobalamin.
    I read that you are taking lithium. Is this lithium orotate? How effective is this?
    Are there other supplements that help you?
     
    Last edited: Jun 23, 2015
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  7. Tom_Nightingale

    Tom_Nightingale

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    Thanks for the reply!

    I don't take any right now. I had too many bad experiences, but they were long ago. I found a post on here from 2 years ago saying I tried hydroxycobalamin and I didn't do well. But I read today again on Heartfixer I really shouldn't. I might give it a try again, my memory is one thing that has gone down the tubes as a result of my illness.

    Yes, but I took too much and ended up with mild serotonin syndrome :( It may be a case of tiny doses. What are the potentials here? You say improve the effectiveness of COMT, so help manage my neurotransmitter levels yes? And as a methyl donor, the flip side is it could generate more catecholamines?

    No, got a recommended resource?

    I don't know jack about those SNPs, but it seems like you're saying I do a decent enough job converting folate from plant sources, but maybe not so much from supplements? Just not well versed on the kinds of folate you are speaking of here

    Good to know. Perhaps I can find some research. I struggled with depression early in life, perhaps I can find evidence to help explain...

    I'll read up on it! I would like to have a healthy amount of glutathione. I understand that if I go slowly with my detox, I should improve in this respect as well, yes?

    Well I hate my naturopath even more now. She totally neglected to include this in my treatment plan. Sigh... I think I will start with this, I thought I always did well with D. I would spend good money if there was a good product, do you have any in mind? I believe I could find a whole food Vit D, which would increase absorbtion. Is this bad though? Can I only tolerate tiny amounts, no matter how I take it in?

    I'm going to look into this later. I was taking zinc during the winter, because I was getting sick constantly and my wound healing is bad. Does wound healing improve with better methylation?

    From Heartfixer: "Ornithine/Aspartate supplementation (LoLa), administered IV or orally, is safe and effective in reducing ammonia in patients with advanced liver disease, and we can utilize this low cost approach to deal with ammonia excess in Methyl Cycle patients, starting with 1000 mg (1/3rd teaspoon) three times a day, increasing to one teaspoon as needed. Aspartic acid has a glutamate-like stimulating effect, and if one experiences agitation/anxiety than aspartate can be dropped in favor of more ornithine."

    I think it's a good option in my case, as I could use less stimulating effects from glutamate, probably. This should improve my BH4.

    Interesting. It seems though that I run into ammonia build up quite quickly when I supplement with B's like I have been these past few days. I had a pretty crummy day today because I was experiencing a detox reaction. Nose clogged, sinus hurt, throat hurt. Read on Heartfixer that Yucca plant can help remove ammonia, so I grabbed some at the store. Not 30 minutes later I was doing a heck of a lot better! I might have an issue with ammonia at the moment, and who knows maybe sulfur. I'd rather go slow and find out I don't then go fast and find out I really do!

    Also, about the gut: I battle candida. Sooo hard. But I beat it after changing my diet, adding LOTS of probiotics and using natural antifungals! But I have really stuck a nail in the coffin of my gut issues by taking DAO and going low histamine diet. I have happy poops, and I don't remember the last time I smelled my fart :) (This is a good thing... right guys!??)

    Cool. Did you tend to be manic your whole life? I was always calm. Too calm, and dropped into major depression. I had an unfortunate reaction with the wakefulness drug Provigil, and ever since I've needed meds to keep myself from going psychotic and manic. I can get too excited about things too, my happiness transforms into mania and then into psychosis.

    Gosh, another facepalm when I read this. I wish I had gotten to try orotate with my ND, but alas. My psychiatrist has never used it, but isn't against trying. I know it would be a big relief for my organs to switch to orotate from carbonate. Technically I take a sub-theraputic dose of lithium. Same thing with Seroquel. I don't think I have bipolar or schizoaffective disorder like I've been diagnosed... I think I may get a chance to come off these drugs in the future if I can get methylation right!

    P5P is great at "burning" off edginess that I can get from histamine fluctuations. Like I said the DAO has also changed things. My sinusitis of 3 years went away completely. Turmeric is fantastic in my opinion, my inflammatory issues like vocal chord dysfunction (the underdiagnosed disorder that most people believe is athelte's induced asthma) went away, I feel less pain after biking (my hobby). Olive leaf extract is great at fighting colds/flu and inflammation. Rosemary is great at reducing allergic problems, as is this wonderful tincture my ND gave me of Eyebright, Nettle and Bayberry. Ginger has so many benefits for the gut... I've had the chance to try wayyy to many things, and some are good!
     
  8. sunking101

    sunking101

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    AFAIK the only truly natural form of D3 (other than sunlight) is contained in cod liver oil. Cholcalciferol, obtained from lanolin, is the standard supplement form.
     
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  9. Tom_Nightingale

    Tom_Nightingale

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    Well lucky me! I started taking Nordic Naturals Cod Liver Oil 2 weeks ago. Though I just looked at the bottle, and it has a range of 0-20 iu per serving...
     
  10. TheChosenOne

    TheChosenOne Senior Member

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    I guess its something that you will realize when you try it.

    I haven't tried a phenol diet yet, so I can't tell.

    Folate is what you find in plants, whereas folic acid is what you will find in supplements.

    I think that vitamin D is always good, as long as it doesn't reach toxic levels.

    I would think so.

    I think adressing amonia is the right way to go.

    I'd call myself hypomanic from time to time. It's not as bad as you might think, especially not with the supplements I take.

    Lithiumcarbonate can create or worsen thyroid problems.
     

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