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...
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Help please!

Discussion in 'Genetic Testing and SNPs' started by Foxten, Nov 8, 2017.

  1. Foxten

    Foxten

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    Hi!

    First post here, and would really appreciate some guidance in helping my daughter. Will try and keep the history brief!

    Long term history of food, animal and pollen allergies. The last three to four years has been a constant struggle for her health wise, catching every virus she encounters. In that time she has also battled terrible anxiety and now depression. She does not handle stress well and gets angry very easily. She is always exhausted. Wide awake at bed time and struggles through the day. No diagnosis at this point, doctors seem to think the sleep/exhaustion is all part of her anxiety and depression. Had nitrous oxide a few times last year for dental work and I do feel concerned that this has contributed, although she did seem to recover well from it at the time. She is a long way from the bright, happy, healthy and confident person she was before all this began.

    I discovered an article on undermethylators a while back, and it seems to fit her. We tried Folinic Acid because she does not consume a lot of folate foods. That ended with her in pain and very low mood wise (overmethylating?) I decided to run the raw DNA results we had from Ancestry through Nutra hacker. I know it is not the most reliable source and that is why I am here hoping someone will be able to help me work out which way to go. I have been trialling vitamins and we were doing ok until recently with B2, P5P and hydroxy B12. But the B2 and B12 together seemed to mess with her bowels. I added in a mineral supplement (without iron and copper), in case she needed iodine as there is a strong family history of hypothyroidism, it also has some potassium in it. She only took that and P5P while away for three weeks. Her energy levels have improved, but we also saw a return of the anxiety she seemed to be getting on top of.

    Her results from nutrahacker:
    Homozygous - MTRR (rs1802059), VDR (1544410), VDR (rs731236), SOD2 (rs4880 ), GSTP1 (rs1695), NAT2 (rs1208) and NAT2 (rs 1801280)
    Heterozygoes - CYP1A2 (rs 762551), COMT (rs4633), COMT (rs4680), MAO-A (rs6323), CBS (rs 1801181 and rs234706), MTHFR (rs1801131 and rs2066470), MTR (rs1805087) MTRR (rs1801394) and SHMT1 (rs1979277)

    It seems like so many, and I can't work out what is being expressed and making a difference and what isn't! I think she needs more folate, but am hesitant to give her that as she reacted poorly when she tried it. I am only using 1/4 to a 1/3 of each tablet/capsule/lozenge to try and avoid depleting other nutrients.

    If anyone can help me at all, I would really be grateful. She needs a break! Thank You.
     
    Last edited: Nov 8, 2017
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  2. Countrygirl

    Countrygirl Senior Member

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    Hi @ Foxten I'm sure many of will be able to help you here. For me it is the middle of the night and I waiting for my zopiclobe to kick in so will have to return to morrow. There is a mass of info that can help you and hopefully members were will be able discuss the topics you have mentioned.

    @Hip may be able to give some good advice for starters.

    I hope to return later tomorrow.

    Welcome to the forums and I hope your situation improves asap.
     
  3. Foxten

    Foxten

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    Back again after doing some more reading and thinking.... would I be right in thinking that B12 is something we need to add back in, considering she has both MTR and MTRR SNPs?

    Thank You @Countrygirl. It really would be wonderful to see her feeling back to her old self, or closer to it!
     
  4. Diwi9

    Diwi9 Senior Member

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    @Foxten - I don't really have input regarding methylation...but there are others on here who know a lot (@caledonia comes to mind).

    Because of your daughter's allergy problems, it might be worthwhile to look into Mast Cell Activation Syndrome (MCAS). Many people on the forums have problems with MCAS and it has been widely discussed. There are treatments.

    I hope you find some help here. It is always heartbreaking to hear about children with this horrible disease...but wonderful to know when a child is so loved that a parent comes here to help. There is a private sub-forum on PR for parents, I believe you need to request permission to join from a moderator.
     
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  5. Foxten

    Foxten

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    Hi @Diwi9. Thanks for the MCAS suggestion. I am wondering about things like that. What I have found, is her usual spring time allergies have not been as severe this year, perhaps due to helping out her methylation. I don't know how people here feel about the under and over methylator tags. But She certainly seemed to be under according to the high histamine levels. But since beginning supplements, her allergies seem to be a lot milder.
     
  6. Hip

    Hip Senior Member

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    If your daughter has generalized anxiety disorder (which is common in ME/CFS), then the supplements listed on this thread may help:

    Completely eliminated my severe anxiety symptoms with three supplements!

    You doctor can also prescribe SSRI drugs for anxiety (which work for depression also), but these are sometimes not well tolerated by ME/CFS patients.


    I also have comorbid depression with my ME/CFS; it comes and goes on its own accord, and for me I found it hard to treat. But I have had some success with high dose inositol 15 grams daily, Spanish saffron 100 mg, and low dose amitriptyline (¼ of a 10 mg tablet).

    I also find that if I don't take B12 sublinguals regularly, I get more depression. Folinic acid 200 mcg daily (but not methylfolate) may possibly help, but I am not sure.


    My latest discovery is that hydrogen rich water helps combat the emotional sensitivity of ME/CFS (such sensitivity can make you more vulnerable to stress, I find). Hydrogen rich water also has some mild antidepressant effects for me.

    Hydrogen rich water is just ordinary water with some hydrogen gas (H2) dissolved in it (much like sparkling mineral water has CO2 dissolved in it). You can buy tablets or sticks that dissolve in water to make hydrogen rich water, but they are at present a little expensive. Hydrogen rich water has ben shown to stimulate the release of ghrelin, a hormone which acts on the hypothalamus (a brain area linked to emotions and the stress response).
     
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  7. frederic83

    frederic83 Senior Member

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    This one also helped me with depression (high dose), but I don't have to take it daily otherwise I loose the effect.
     
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  8. sregan

    sregan Senior Member

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    @Foxten How old is your daughter? I can relate and had some success treating my daughter some of this might apply click here

    Have you given her a lot (quantity or duration) of MB12 or MFolate? How long have you been working with her?
     
  9. Foxten

    Foxten

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    Thank You all for you replies.

    @sregan - she is 11. We've been trialling a few things over the last couple of months. With varying levels of change. After looking at the MTR and MTRR info I have changed it up again recently. She is only taking Hydroxy B12 at the moment, and is doing a lot better after a short amount of time. So I'm thinking her biggest issue lies with that. Especially considering she has had four rounds of Nitrous Oxide before we found out about all this. And even though she has recovered well from it, her energy levels always seem to suffer. I am not sure if she needs methyl B12 though, considering she has both Homozygous and Heterozygoes issues with those two. But there is a definite change. Energy levels are improving, mood is improving and motivation is improving.
     
    Last edited: Nov 16, 2017
  10. Learner1

    Learner1 Professional Patient

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    The suggestion to look into MCAS is a good one. My doctor has been managing mine with lots of methylating nutrients plus lots of B5, vitamin C, curcumin, boswellia, and quercetin.

    Best if you look at the entire methylation process. Once you start methylating, things can back up as they can't get out of the body.

    You need adequate fiber (vegetables, ideally) and water, as well as B12 and mokybdenum to help with removal.

    Then, working backwards, adequate amino acids - glycine, cysteine, and glutamine. Need to be careful and not have too much glutamine. Glycine can be taken before bed to promote sleep, and many of us take NAC, n-acetyl-cysteine. And adequate B6.

    For the methionine cycle, methyl B12, b6, B2, magnesium, and may be potassium are needed.

    And once those are in place, folate. Not folic acid, as many of us can't use it, but folinic acid or 5-MTHF.

    Checking out gut health with a DNA stool test would be useful, too.

    And phosphatidyl serine or Seriphos before bed may help reregulate cortisol patterns. There are several other natural strategies, too.

    It would be best to work with a functional medicine doctor, and even better if you do a comprehensive nutrient test, like a Genova Diagnostics NutrEval FMV with Amino Acids and Vitamin D test to guide your decision-making, rather than randomly trying things that people on the internet tell you they use- we all have different genes and environmental factors.

    Sounds like you're starting to make progress... and it should be a solvable, though complex problem.

    Best wishes...
     
  11. sregan

    sregan Senior Member

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    My daughter and I also have MTR and MTRR mutations and feel I need extra B12 because of it. One of those mutations means you don't recycle B12 that well and the other means you use it up very quickly. It's a double whammy. Wondering if the Hetero COMT is anything to worry about. If it is I believe D3 will speed up COMT to some extent and can overcome the mutations. My suggestion is to get her minerals up. Most likely depleted from methylation are (in order) Potassium, then Zinc and Magnesium.

    per Freddd
    In the trace category Copper, Manganese, Molybdenum, Boron and Selenium might be all supplemented in small doses per day. Extra care when using Selenium and Copper (Copper taken always with Zinc.)

    Freddd was taking 60mg of Zinc per day with 15-30mg of copper (You daughter probably doesn't need that much copper). You should adjust for her weight.

    Vitamin D did wonderful things for my daughter (for a while) as did a b-complex with active B's and methylfolate. I had her talking MB12 with that B-complex but I think the MFolate in it was too much for the amount of B12 she was taking and it stopped helping her after about 2 months of working very well.

    Right now she's stable on Mirtazapine and I'm trying to get her minerals up just as I suggested for you.
     
    Last edited: Nov 16, 2017

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