Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Another lost newbie...

Discussion in 'Genetic Testing and SNPs' started by AmberHEH, Mar 28, 2015.

  1. AmberHEH

    AmberHEH

    Messages:
    7
    Likes:
    3
    Peoria, IL
    Hi all, I'm looking for some help just making basic sense of my SNP's. I've been reading up on MTHFR for a while on the suspicion that I was positive. But with the rest of my info, everything I read seems to conflict and I am just bewildered.

    So, here are my SNP's, per GG:

    MTHFR, all heterozygous
    • MTHFR C677T
    • MTHFR 03 P39P
    • MTHFR A1298C
    Homozygous Mutations:
    • VDR Taq
    • MTRR A66G
    Heterozygous Mutations:
    • COMT V158M
    • COMT H62H
    • MAO-A R297R
    • ACAT1-02
    • MTRR A664A
    • CBS A360
    As for me, my issues are: autoimmune achalaisa, an esophageal disorder that is largely under control now with dietary modification; IBS; constant fatigue, insomnia, and irritability/anger. I also have a dx of major and low grade depression and anxiety, though I haven't been medicated for a long time. I have been on a variety of Paleo-style diets since June of 2012, doing GAPS and AIP with some improvement, though I didn't have serious insomnia issues prior to Paleo. I've definitely got serious motivation issues and follow through issues that I didn't used to have before a major depressive bout in 2007.

    I've been working hard to heal my gut, but apart from managing my esophageal spasms and helping me lose about 60 lbs, I still have IBS symptoms and gain a lot of weight if I even look at grains. I have yet to find a supplement that helps me feel good for more than a day or two - Thorne MethylGuard + does nothing for me, nor do tons of ferments, nor zinc, nor turmeric, 5-htp or melatonin. Digestive enzymes are about the only thing I am religious about.

    I know that I don't do well on very low carb, it totally messes up my hormones, and makes my armpits smell like ammonia, so I do try to eat a wide variety of veggie carbs. Unfortunately, I don't have the money to run a lot of expensive testing at this point, so I'm just trying to figure things out on my own. I'm a big fan of dietary modification. If anyone can tell me where I need to at least start, that would be fantastic.

    ETA: I also have major low sex drive so I'm sure there is another hormonal or neurotransmitter issue there.
     
  2. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,436
    Likes:
    3,392
    Welcome @AmberHEH!
    High ammonia is a problem for a number of people around here... You can do a search for ammonia on thread titles.

    I suggest you to take a look at Freddd's protocol (link in my signature). It can do wonders for hormones and neurotransmitters once one gets it adapted to the personal tolerances.
     
    AmberHEH likes this.
  3. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    766
    USA
    Hi;

    Many of the paleo folks have been finding that they need more carbs than the standard, especially women.
    I don't know if you have looked at the Mark's Daily Apple forum, started by Mark Sisson, but people are suggesting to each other to eat white potatoes, other starchy veg., or even rice as a remedy. They suggest that eating carbs with dinner may help sleep. Carbs help make tryptophan available for serotonin formation.

    Personally, I can't eat as much protein as the paleo folks do, but they're healthier than I. I don't know how many grams you eat, but that could be one cause of high ammonia. I'm not sure if the Thorne product has B6 (P5P), but it's good for protein digestion. Some people with Candida produce ammonia. ( They suggest taking the herb, Yucca for it.)

    How do fibers make you feel? Some improve with increased fermentable fibers, although if the IBS is from bacterial overgrowth, then they could cause discomfort. If you've been low carb for a long while, gut microbes may have decreased.

    I don't know how it works, but, I've been taking vitamin K2 for some months, and it has increased my libido.
    I take 1-2 gms. of MK4 in the morning. ( any more causes insomnia ) Others can take a lot more.... The MK7 is a natural type, but it can really be stimulating.
     
    merylg likes this.
  4. Mary

    Mary Senior Member

    Messages:
    2,561
    Likes:
    5,454
    Southern California
    Hi @AmberHEH - I'm afraid I don't know anything about SNPs, but here are some things that have helped me: (1) Freddd's procotol (as Gondwanaland mentioned). The doses in the Thorne's Methyl Guard are not very high. I take a lot more B12 and a little more folate. I'm not telling you to increase what you're taking but it's something to consider and as Gondwanaland says, you can adapt the protocol to your tolerances

    (2) potassium - after starting Freddd's protocol, I discovered I had a chronic potassium deficiency. My once-a-year blood work was on the low end of the normal range, and it's a long story but finally I realized I need to take extra potassium every day - with your IBS you may very well not be absorbing food or nutrients properly so very well could be deficient in potassium (and other nutrients). If you supplement with potassium, it's important to tritrate up gradually. Also, read Freddd's posts about potassium - starting methylfolate and methylcobalamin can rapidly increase the need for potassium, thus causing a functional potassium deficiency (which happened to me). Low potassium causes fatigue.

    One thing that helped me a lot with several different digestive issues was muscle testing by a chiropractor. He picked up things the doctors didn't and helped me a lot with Standard Process supplements. I also learned a lot about nutrition and what I should and shouldn't eat. It's relatively inexpensive compared to doctor fees. You can sometimes find them in the phone book or go to the Standard Procses website which has search feature for practitioners.

    Re B6 - I found I had to take 150 mg. a day (P-5-P) in divided doses. This also helped with energy. I'm not telling you to take that much, but just there are so many variables that can be affecting you. A good chiro may be able to help you with the IBS and other issues, and also they can help determine proper doses of supplements, which hopefully would help solve many of your problems --

    Good luck-
    Mary
     
  5. AmberHEH

    AmberHEH

    Messages:
    7
    Likes:
    3
    Peoria, IL
    I'm not sure if my ammonia is high now - these days I do try to eat less protein and more veggies. I do eat white potatoes - I removed them for a few months on AIP but have reintroduced with no changes. IMy IBS is fairly well managed - I will just spend a few days with my stomach hurting for no apparent reason and I am IBS-c when it's acting up anyways. I suspect low FODMAP might manage the stomach issue but I don't know if I can bring myself to cut out my beloved crucifers and onions. My digestion is much better these days, just not perfect. But that is a really good point about the carbs at night - I think my breakfast has the bulk of my daily carbs, rather than dinner. So I'll have to add that as a focus.
     
  6. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    766
    USA
    It may be only certain FODMAPs that cause problems.
    I've been able to eat onions, but not cauliflower.
    The worst offenders, in my case, were polyols. (sugar alcohols)
    They're used to sweeten sublingual vitamins, and I couldn't stop the B12, but I reduced them elsewhere.

    Reducing, not completely, FODMAPs did help my constipation.
     
    ebethc likes this.
  7. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,436
    Likes:
    3,392
    I would love to read a more detailed version of your findings if you don't mind... Please also include the polyols... I am learning a lot from your posts!
     
    Crux likes this.
  8. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    766
    USA
    @Gondwanaland ;
    Here's a link to a right lively chart;).
    There are other charts, though, but they don't seem to jibe with each other all the time.:confused:

    http://www.drgangemi.com/wp-content/uploads/2012/03/FODMAPs.pdf

    Before you get bummed about so many FODMAPs and polyols to cut, please don't.
    You probably won't have to cut them all, just the main offenders.

    For instance, I refused to give up avocado. ( polyol )
     
    ebethc and Gondwanaland like this.
  9. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,436
    Likes:
    3,392
    I won't have this problem since avocado gave up on me one year ago :meh: (salicylates?)
    Thanks for the link, I know the list, what I am really after is your specialized interpretation ;)
    I would never think of cauliflower as a problem for constipation :wide-eyed:
     
  10. AmberHEH

    AmberHEH

    Messages:
    7
    Likes:
    3
    Peoria, IL
    I suspect my issue is with fructans above all else. I know for a fact that is the biggest problem FODMAP for my 4 year old, and probably the root of his gluten intolerance (even trace gluten triggers peripheral neuropathy for me so I avoid it like the plague). But mostly, I feel like if fructans are the issue, it's not a consistent one, so I can never predict when it's going to bother me. I'm sure there's something else going on that is holding back my healing. I've done all the gut healing stuff ad infinitum; I've done the autoimmune paleo protocol. That's why I'm finally looking at my SNP's - it's a rabbit hole I didn't really want to go down, but clearly, diet alone is not enough to "fix" me. I really appreciate Freddd's protocol - it makes a lot of sense. I am wondering if I need the MAO-A version of the protocol - I am hetero for that particular SNP but I definitely feel like my issues align with low dopamine and serotonin.
     
  11. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,436
    Likes:
    3,392
    @AmberHEH how's your thyroid? Getting the proper support to my thyroid got me out of the hole.
     
  12. AmberHEH

    AmberHEH

    Messages:
    7
    Likes:
    3
    Peoria, IL
    I wish I knew the answer to that. There is a dearth of good, think outside the box doctors in my area, and I went to the one everyone recommended. He wouldn't run anything but TSH, which was 3.0, I think, so normal. So he refused to run a full panel. Mind you, this was after I gained 20 lbs in a month and had a major increase in fatigue and insomnia after trying to reintroduce non-gmo corn into my diet. Ugh. My mom and grandmother both had Hashi's and I've had a full thyroid panel back in late '07 I think, which was normal, but I just don't have the info right now. I am looking into going to an OB to see if she will test me.
     
  13. AmberHEH

    AmberHEH

    Messages:
    7
    Likes:
    3
    Peoria, IL
    I also dropped my basal temp a full degree when doing a low carb GAPS intro - that's how I figured out that low carbing wasn't agreeing with me in the first place. However, I am thinking it's doing a little better since I did AIP, as my body temp has almost rebounded to normal, with many days where I'm 98.6 again, which I used to always be.
     
    Crux likes this.
  14. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    766
    USA
    Hi AmberHEH;

    With your MTHFR snps, You could be having trouble converting folates to the active form. Folate supplementation is safest and most effective taken with B12.

    The thing is, the methyl groups can be pretty stimulating, but Methylfolate is best for MTHFR mutations. Methylcobalamin is easy to find and less costly, but some people can feel overstimulated by it. IF that's the case, then Hydroxocobalamin could be taken. ( I see you are a COMT+)

    Folks here are trialling various dosages of B12 and folate. It's going to be up to you to find the proper dosage. Starting with low doses is a good idea.
     
  15. Crux

    Crux Senior Member

    Messages:
    1,101
    Likes:
    766
    USA
    No Avocado !?! Tragic!

    Some of the foods that make other people go, make me stop, paradoxically. I've read that it could be inflammation causing either diarrhea, or constipation.

    Mostly, for me, and possibly others, is that these types of carbs, sugars, fermentable fibers feed gut microbes. If someone has a good balanced microbiota, then these nutritious foods would contribute to health.

    If the individual has dysbiosis, with an imbalance of microbes, well then, bad things will happen.

    We folks with IBS-C can react to the same foods that cause IBS-D people to have D, only we'll get C'd. :wide-eyed:

    We IBS-C people could have an overgrowth of methanogenic microbes, which tend to cause constipation.
     
    South and Gondwanaland like this.
  16. AmberHEH

    AmberHEH

    Messages:
    7
    Likes:
    3
    Peoria, IL
    To be honest, I was supplementing back before I got my SNP's, and up to 6 methylguards a day with no changes, so I got lazy about it and gave up worrying about the extra supplements. These days, I know I get a lot of folates from the ferments I consume (primarily sauerkraut and kombucha), but I know it's not methylfolate. Now that I have a clearer picture of my SNP's, I can see that I definitely need to target my B vitamins and especially folate and B12. I do get some additional folates and B12 from a multivitamin, (and I know to avoid folic acid and cyancobalamin). I suspect that I didn't see a benefit from the MethylGuard now because I was blocked somewhere else. Figuring it out is just exhausting, and definitely some of the links and info from this thread have been helpful in giving me some direction.
     
    Crux and Gondwanaland like this.

See more popular forum discussions.

Share This Page