1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

Calling all experts

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by anxiousguy, Mar 2, 2014.

  1. anxiousguy

    anxiousguy

    Messages:
    47
    Likes:
    3
    I have done all my research and would love it if @Freddd @caledonia @Critterina could take a look at this.

    @Valentijn

    I would like some help with how to proceed. I do have a MTHFR doctor, but may be trying to find another, as mine has suggested some things that may indicate he isn’t as well versed as I would hope (suggesting for me to take ¼ of a 15mg Deplin and no b12 other than a minute amount in a non-sublingual non shot form ) – though I could be wrong.



    Oh boy…. here we go…..



    First off: I am a healthy person. I don’t have CFS/ME or any other problems. The only thing that is wrong with my OCD/anxiety/Depression. I have had it my whole life. I was on SSRI’s and other drugs prescribed to me by clueless doctors. They never really helped and made me so tired that I would fall asleep at stoplights. I got off them 1 year ago. I spent the whole year seeing tons of doctors and getting tons of blood work. The main reason for this was the fatigue. The fatigue went away after I got off the meds and improved some of my deficiencies (including getting my D from 11 to 60).



    I RADICALLY overhauled my diet. I used to eat primarily junk food and soda and crap. I now eat healthy, organic foods including lots of fruits and vegetables and just drink water. I have made tons of lifestyle changes. I eat Chinese and have some wine on the weekends but am good during the week. Avoid dairy and gluten as much as possible. PHYSICALLY I feel great.



    I spoke to Sherry Rogers over the summer and she had me taking folic acid every day after doing a phone consult with her after doing the MetaMetrix Cardio Ion panel. Later in the year a doc had me doing 1ml shots of methylcobalamin every week. I was feeling very sad/anxious/depressed in the fall. There was a lot of stuff that was happening in my personal life, coupled with “health anxiety”. I went to see a psychiatrist who wanted me on pristiq and deplin. I opted not to take the pristiq (proud of myself) b/c I didn’t want to start down the fatigue and side effect road again. I started taking the Deplin (15mg) after researching it online. I ran across someone talking about MTHFR. I remembered seeing MTHFR in my stacks of blood work (no doc ever mentioned – said nothing to worry about). Thus the journey began.



    I stopped taking the Deplin and ordered 23andme. I don’t THINK that I was having adverse reactions to the mehtylcobalamin or Deplin. I am not sure though. I had so many problems and anxiety around the time when I was taking it. Worst of my life. A lot of it was before I took any of them and the triggers to my episodes were the same whether I was on them or not.



    Here is where I am at. I am OCD/anxious. I start reading about MTHFR and I get really anxious. There is sooooo much information and conflicting information etc. I have literally had panic attacks after posting/reading Yasko’s board. After a year of spending hours a day and over 5000 on tests and doctors, I need a little break. I sometimes wonder if I would be better off not dealing with this as I feel 100 times better when I am not focusing on my health.



    I would like some recommendations on how to proceed. Please be aware that I am VERY sensitive to more and more tests and more and more supplements. For example: If you are going to take this then supplement with that and check this and then take this for that and check these levels and get these tests then supplement more. I want a simple plan. I can’t spend hours a day and thousands on more stuff. I need to get off this course. It has ruined my relationship and made me a crazy person.





    Still reading? Thank you.



    Here is where I am at. I am attaching all of my info. I have TONS of blood work. If anyone would like to see it or has any questions on anything that I might have tested, please let me know. I don’t know if there is anything that would be illuminating as far as future course of action. I do have high homocysteine (in range, but high?) I did have high methionine. I do have some aluminum.





    1) People talk about cofactors and other things that you need to take – minerals, other b vitamins, etc. What is ESSENTIAL?

    2) For my snps, what should I be taking? Which b12? Which methylfolate? Does any b12, give you the benefits? Do you just need to avoid b12’s that give you adverse effects? How much of each should I be taking and which should I start first? How quickly do I go up if I feel ok?

    3) Once I start, I have niacin on hand and ordered potassium powder. How do I know if I need to take something and what to take and how much?

    4) Are there any tests that I should take or info that anyone needs before I start this?

    5) Will methylation fix anxiety/depression?




    My snps are in my signature.



    For ACAT, I think that my gut is fine. My NP says that I am absorbing (my K and B6 were through the roof after supplementing over the summer) I have regular bowel movements and rarely have diarrhea or upset stomach. I don’t have presence of yeast, celiac or major food allergies.



    CBS – heartfixer says that it results in slightly faster disposal of homocysteine and shouldn’t result in sulfur or ammonia problems. I also read that it lead to high levels of homocysteine. I did have high ammonia on a blood test and a doc retested it and it was down (didn’t do anything, just came down on its own.) I have been eating eggs every day and they don’t seem to bother me. I bought sulfate test strips. They are hard to read, but it seems that the reading changes throughout the day. Anywhere from 200 or 300 to 1000. The day after I drank wine they seemed to be high the whole day and came down the next day to 300/400 territory (again, hard to read). I am hetero, not homo, do I need to treat for this? Nutrachacker says to take B6 (I’m getting retested as I was high.) but I think I read that it shouldn’t be in p5p…is that correct?



    Am I ok to skip those two first priority mutations b/c my gut is “fine” and the strips are showing what they are?


    As for the rest of the treatment plan, there is a bunch of stuff I don’t understand from nutrahacker. Some thinks say to use a specific thing and others say to avoid.


    Do I basically need methylfolate and b12? Can I just take hydroxyl or adenosylcobalamin (do I need both?)? and methylfolate?


    A couple notes from my research:

    Since I have comt/vdr, I should be taking hydroxyl/adenosyl NOT methylcobalamin


    A lot of what Ive read says to avoid methyl donors. I assume l mehtylfolate is a methyl donor. How do you fix methylation without it?


    As far as MAO-A R297R

    - When a (+/+) MAO-A mutation is combined with a (+/+) or (+/-) COMT V158M mutation, imbalances in neurotransmitters may be more severe. These imbalances can potentially lead to neuropsychiatric conditions and symptoms such as Obsessive Compulsive Disorder (OCD), mood swings, and aggressive and/or violent behavior



    What about b4? DO I need to test for/supplement?


    I am attaching my 23andme, nutrahacker and detox





    Thank you in advance.
     

    Attached Files:

    Last edited: Mar 2, 2014
  2. Critterina

    Critterina Senior Member

    Messages:
    821
    Likes:
    381
    Arizona, USA
    @anxiousguy ,

    I'm going to vehemently deny any "expert" status, but my ego is still going to have me reply. LOL! I'm not going to look through your postings now, though.

    My opinions:
    1. Yes, you can skip the first two fixes and go straight to the problem
    2. Yes, you basically need methylfolate and B12 (methyl or hydroxy, whichever)
    3. No, you might not need adenosylB12. Probably doesn't hurt anything but your wallet if you do take it.
    4. Methylation will maybe not 'fix' but will probably improve anxiety/OCD/depression. I would have put $100 on you being MTHFR A1298C + or ++.
    5. B6 will probably help you lower your homocysteine, and would be a good thing to take. Apparently I can't convert B6 to P5P well. I don't know if you can find that in your SNPs; I wouldn't know where to look. Whichever one you take, don't take more than 100 mg/day. There is a record of one person being toxic at 100 mg/day, but it's generally considered a safe amount.
    6. I don't have a good handle on methyldonors that cause bad reactions or what reactions they cause - I'm not one of those people, and from what I read, the reactions are varied. Methylfolate should end up being your best friend. I seriously doubt that you're going to need the niacin.
    7. I'll let others comment on what a good basic set of supplements is. I would suggest some vitamin C and chelated multi-minerals. If I looked through your tests results, I might have a different opinion.
    8. I bought some biopterin (BH4), but it's expensive and I wouldn't be sure that you couldn't get the same effect with methylfolate.
    9. No more tests if I were you. Not for BH4 or anything. With MTHFR A1298C ++ and your symptoms, it's pretty much a sure thing that you're low in it.

    This is the way I see it: Methylfolate will push you to make BH4, and better BH4 levels will help your issues. You're going to end up taking some pretty high doses, I would guess. B12 will take the methylfolate away from making BH4, but it will help you recycle the homocysteine and make SAMe, which gets used up many ways, including making the neurotransmitters. So it's counterproductive regarding your anxiety/OCD/depression, and will lessen the effect of the methylfolate, but you also need the other things it does.

    What order and how much? That depends on how you reacted to the Deplin, and how much you ended up taking. If you did OK on 15 mg, I would go back to that. Ramp up if you feel you need to. And I would probably start the B6 or P5P at the same time (or a day later, to be sure you're OK with the methylfolate). If you are comfortable waiting a week or so before starting the B12 - and some people here might not be comfortable with you doing that, it's your decision - I would do that and add it incrementally. I don't know how much you were taking before, but maybe start with a quarter of that and increase slowly. The key is going to be to keep good records, change one thing at a time, and write down how you feel, and whether there were extenuating circumstances. Be the guinea pig and the scientist. Trust how you feel. Does the B12 make it worse or better?

    Deplin is a prescription, and I'm not going to tell you to experiment with it. But I have heard that some people take two of them. If you think you might do better if with more, ask your doctor.

    What testing to do? Personally, I would want to do serum amino acids and homocysteine after a month or two. What I would look for are low tryptophan and tyrosine, because with more BH4, you may use those up. (I supplement with up to 1.5 g tryptophan a day because I was still at half of low-normal when I was supplementing 0.5 g, and I was only taking 1 mg methylfolate. Tyrosine didn't deplete for some reason.) There are amino acid patterns that indicate B6 deficiency, also. If you use B6 and not P5P and show deficient, I would consider a change to P5P.

    Ok, that's my two cents worth. Please consider the other opinions and decide for yourself.
     
  3. anxiousguy

    anxiousguy

    Messages:
    47
    Likes:
    3
    @Critterina

    Thanks for the response. Sorry for not responding to your message sooner.

    I did speak to Tim Jackson. He said that the AdenoB12 is active where Hydroxyb12 is not.

    I have not started methylation yet and don’t know if I will now or later this year as there is so much to all of this and it is causing me great anxiety.

    Why would you have bet $100 on A1298c?

    I did get blood results back from one of my other doctors and it revealed high cortisol (perhaps leading to my low testosterone?) and low serotonin. He wants me to take tryptophan.

    Thanks again
     
    Critterina likes this.
  4. Critterina

    Critterina Senior Member

    Messages:
    821
    Likes:
    381
    Arizona, USA
    No prob - I've been offline mostly since I wrote that.
    Yes, and from what I understand, AdB12 works in the mitochondria. HydroxyB12 is recommended as an alternate for MethylB12 for people who are sensitive to methyl donors. I don't think that you are sensitive that way because you used to take MethylB12 without serious side effects. (Neither of them substitute for the AdB12 according to the "general consensus" on this site, but I can't say for sure as I have not done the research.)
    I'm sure it does, but you are predisposed to anxiety, and being intelligent, you just can figure out that much more to be anxious about. I hope that you do start back on the Deplin and MethylB12 that you were on before. You may not have noticed any effect yet, but you may not have been on them long enough. You may also have been low on tryptophan, which would make them less effective.
    Oh, this one is easy. You said:
    "I don’t have CFS/ME or any other problems. The only thing that is wrong with my OCD/anxiety/Depression. I have had it my whole life. I was on SSRI’s and other drugs prescribed to me by clueless doctors." Then you said, "I RADICALLY overhauled my diet...PHYSICALLY I feel great." and also "I don’t THINK that I was having adverse reactions to the mehtylcobalamin or Deplin." and "Here is where I am at. I am OCD/anxious. I start reading about MTHFR and I get really anxious." I would have put $50 down that you were A1298C at least +/- with the first quote. With the second, I raised it to $100. Then with the rest, you had to be +/+. These are exactly the symptoms that can be expressed when you have A1298C. And since you cleaned up everything else, I was ready to bet, and I'm not a betting person. Also, this stuff runs in my family.

    I don't think high cortisol leads to low T, but who knows? I have low both. But that's beside the point.

    I like your doctor's recommendation to take tryptophan. I like it WITH the Deplin (and MethylB12 if you're so inclined). I would keep it that simple. And I know you don't like tests, but I would test for tryptophan levels as often as your doctor is willing to test - every 2 or 3 months if possible. Most people can get by with 500 mg tryptophan. I was at half way from zero to low normal with 500 mg. I needed 1500 mg, and I'm only A1298C +/-. I'm trying to cut back to 1000 mg. So far, so good, but it's only been a few days. Your body can't make tryptophan - it has to come through diet and supplements. How will you know if you have enough if you don't test? Most people take it at bed time, but need the methylfolate (Deplin) earlier in the day.

    And since this stuff makes you anxious, it would be really nice if I could say "trust me on this", but you are the only one who can be responsible for your choices. I wish you the best!
     
    ahmo likes this.
  5. taroki

    taroki Senior Member

    Messages:
    132
    Likes:
    12
    Ontario, Canada
    The OCD/anxiety/Depression might be due to parasites and Lyme. Also I recently found out high Copper toxicity can cause anxiety. I was taking KPU minerals and after the last copper dump I noticed feeling less anxious.
     
  6. skylizard

    skylizard

    Messages:
    5
    Likes:
    0
    I'm also 1298++ and am curious about your journey. I'll be watching this thread and hoping you find a protocol that works for you.
     

See more popular forum discussions.

Share This Page