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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I made it this far but could use some help please.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Reno, Nov 10, 2014.

  1. Reno

    Reno

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    Male, 40, 5'10" 140lb, Fit, (only because I never give up and try my best to muster up some energy and fight through the pain)

    SYMPTOMS LIST
    CHRONIC INFLAMMATION
    CHRONIC FATIGUE
    BRAIN FOG/ DAZE
    MEMORY LOSS
    A BURNING/ lactic acid, FATIGUE FEELING IN MUSCLES
    JOINT PAIN
    TENSION IN FACE, "GRIMACING"
    HEAD FEELS FULL/ PRESSURE
    TINNITUS
    RAYNAUD'S LIKE REACTION TO COLD EXTREME AFFINITY TO COLD
    PINS AND NEEDLES IN EXTREMITIES
    REACTIVE HYPOGLYCEMIA


    Most of those symptoms became very extreme about six years ago
    I have since seen many Doc's and tests but they have no idea whats going on and thought i would benefit from painkillers and antidepressants which i consistently refused.

    I became more proactive in bettering my health, I almost never eat prepackaged food or eat out for the last few years. My diet consist of mostly;
    Leafy greens, Yams, Celery, Carrots, Grass fed beef liver, Turkey (not organic) Bananas, Beets, Pineapple

    I still can't pinpoint what it is in foods that causes my symptoms to worsen maybe the newly discovered Histamine and not Gluten, Lectins and Solanine.
    I recently thought I had Pyroluria so i started taking;B6, B12, Zinc, Manganese
    a month ago and started feeling better so I ordered more bio-available forms such as; P5P, Methyl. B12, Zinc and started other things like vitamin C, Tyrosine, Biotin, D3, ginseng
    and have been taking 5-HTP for almost two years now to help with brain fog and sleep.

    About two weeks ago i noticed i was starting to decline, feet started hurting, hips, knees and scrum, now i'm hobbling around like an old man. Also my skin started to break out, i think its from by body pushing toxins out.

    I got my DNA data back a few days ago and started Methylfolate and SAMe.
    I'm not sure if its some food or too much supplements that is starting to make me decline and today the brain fog started to come back a bit.

    Any help putting me on track to better health would be very appreciated and will be paid forward.

    COMT V158M rs4680 GG -/-
    COMT H62H rs4633 CC -/-
    COMT P199P rs769224 GG -/-
    VDR Bsm rs1544410 CC -/-
    VDR Taq rs731236 AA +/+
    MAO A R297R rs6323 T +/+

    ACAT1-02 rs3741049 AG +/-
    MTHFR C677T rs1801133 AA +/+
    MTHFR 03 P39P rs2066470 GG -/-
    MTHFR A1298C rs1801131 TT -/-
    MTR A2756G rs1805087 AA -/-
    MTRR A66G rs1801394 GG +/+
    MTRR H595Y not found n/a n/a
    MTRR K350A rs162036 AA -/-
    MTRR R415T not found n/a n/a
    MTRR A664A rs1802059 GG -/-
    BHMT-02 rs567754 CT +/-
    BHMT-04 not found n/a n/a
    BHMT-08 rs651852 TT +/+
    AHCY-01 rs819147 TT -/-
    AHCY-02 not found n/a n/a
    AHCY-19 rs819171 TT -/-
    CBS C699T rs234706 GG -/-
    CBS A360A rs1801181 -- no call
    CBS N212N not found n/a n/a
    SHMT1 C1420T not found n/a n/a
     
  2. taniaaust1

    taniaaust1

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    Sth Australia


    That's the big one you need to look at doing something about. I have a specialist for my MTHFR mutation but there is good advice online.
     
  3. Gondwanaland

    Gondwanaland Senior Member

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    I will make my suggestions, others will have more.

    - Sodium bicarbonate foot bath, shower scrub and/or full bath will immediately relieve lactic acid, uric acid and ammonia symptoms.
    - I wouldn't eat beef liver daily - 1x weekly tops.
    - I would also take the other B vitamins (taking too much of one will increase the need for another one) - esp. B1 which appears to be absent from your diet.
    - Also focus in electrolyte balance, especially the alkaline ones: Ca, Mg, Na, K (magnesium will be the most helpful to regulate the others)
    - Check your thyroid

    Hope some of this helps.

    izzy
     
    Tired of being sick and sregan like this.
  4. Valentijn

    Valentijn The Diabolic Logic

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    In addition to MTHFR A677T +/+ indicating a need for methylfolate (not folic acid), MTRR A66G +/+ indicates a need for B12. Folate production and B12 recycling are both at about 30% of the normal rate with those variations.
     
    Tired of being sick likes this.
  5. Tired of being sick

    Tired of being sick Senior Member

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    What are your average BP/Pulse readings?
    supine?

    seated?

    standing?
     
    Gondwanaland likes this.
  6. Tired of being sick

    Tired of being sick Senior Member

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    REACTIVE HYPOGLYCEMIA might be causing most of your symptoms..

    especially if your symptoms are worse a couple to 4 hours after meals

    with shakiness and weakness being the most severe..
     
    Gondwanaland likes this.
  7. Tired of being sick

    Tired of being sick Senior Member

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    If you have LOW BLOOD VOLUME,I'm willing to bet that this would be the cause of all your problems.....
     
  8. picante

    picante Senior Member

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    Looking at your recent experience, since you started on methylB12: You took it for a few weeks before starting on methylfolate. Perhaps you got enough mB12 in your cells that you triggered the two deficiencies that Freddd talks about, which are methylfolate and potassium. Both deficiencies have a lot of possible symptoms. You'll find the lists on page 8 of "A Guide to Freddd's Protocol".

    Read about the deadlock quartet, if you haven't yet. If you are missing one of these, methylation can become "deadlocked":
    methylB12
    adenosylcobalamin (AdB12 or AdoB12 or AdenoB12)
    methylfolate
    L-carnitine fumarate

    I started Freddd's active B12 protocol 4 weeks ago and went into methylfolate deficiency on the 2nd day (diarrhea was the indicative symptom for me). Then I went into potassium deficiency on the 7th or 8th day.

    As I ramped up each item in response to my deficiency symptoms, my lower back inflammation subsided and my neck spasms did, too. That all happened in about 8-10 days.

    There's got to be a reason you started hobbling around in pain. Are you any better since you started methylfolate? How much are you taking? And what brand of methylB12 have you been taking?

    Julie
     
  9. Reno

    Reno

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    [QUOTE="taniaaust1,]

    That's the big one you need to look at doing something about. I have a specialist for my MTHFR mutation but there is good advice online.[/QUOTE]

    I've seen enough Quacks and the good advice is why i'm here.

    [QUOTE="Gondwanaland,]
    Sodium bicarbonate foot bath, shower scrub and/or full bath will immediately relieve lactic acid, uric acid and ammonia symptoms.
    - I wouldn't eat beef liver daily - 1x weekly tops.
    - I would also take the other B vitamins (taking too much of one will increase the need for another one) - esp. B1 which appears to be absent from your diet.
    - Also focus in electrolyte balance, especially the alkaline ones: Ca, Mg, Na, K (magnesium will be the most helpful to regulate the others)
    - Check your thyroid

    Hope some of this helps.

    izzy[/QUOTE]

    The lactic acid/ ammonia burning feeling in my muscles is usually during exercise like riding a bicycle for one minute i'll feel as if a "normal" person was riding hard for 20 min. Bad time to do a foot bath but thankyou for the suggestion, However I also get the feeling in my arms when say laying on my back holding a book or phone above my head reading, that only takes maybe 5 min. befor i need to rest my arms.

    Why not eat beef liver daily? it was supposed to be really good for me.

    I stopped everything accept Methylfolate, C in the morning and 5-HTP, CALM (magnesium) before bed. I think i was overloading the B's. You and Picante have confirmed what i have felt.

    I have also read elsewhere that methyl B12 might have a negative effect depending on other SNP's I think MTRR A66G rs1801394 GG +/+ makes it recycle, just guessing but i'm assuming if i add B12 I will only overload.

    B1 Most foods that are high in it i don't eat because they seem to increase my symptoms but i think it is Histamine in the foods or maybe i have leaky gut. The top GI specialist @ UCDavis didn't believe in leaky gut so i stopped going to him.
    I have yet to see anyone other than you recommend B1 is there a reason?

    [QUOTE="Valentijn,]
    In addition to MTHFR A677T +/+ indicating a need for methylfolate (not folic acid), MTRR A66G +/+ indicates a need for B12. Folate production and B12 recycling are both at about 30% of the normal rate with those variations.[/QUOTE]

    OK this is confusing so because i have the mutation MTRR A66G my recycle bin has been trashed by bums because they took all the B12 cans..? Arrrggg!! Forget what i said in the above reply regarding MTRR , i think i understand, mutation means opposite of the "normal" methylation cycle process?

    [QUOTE="Tired of being sick ,]
    What are your average BP/Pulse readings?

    REACTIVE HYPOGLYCEMIA might be causing most of your symptoms..

    especially if your symptoms are worse a couple to 4 hours after meals

    with shakiness and weakness being the most severe..[/QUOTE]

    I know the test you are referring to i had suspected whatever it was and had a medical assistant perform it, she didn't know what she was doing so i had to explain the test, laying down the quickly standing and retest, Yes i use to get faint and even black out for a microsecond but that happens very little now and most likely because my strict diet i think, mostly cutting gluten out was the first even though i have been tested for celiac after the fact.

    Miraculously the reactive Hypo. appears to be diminishing since i first started B's about a month ago. I can go much longer between meals before symptoms arise.
    And yes you are correct some symptoms are from the Hypo. i feel. But some seem to be induced by food's. Also I have a craving for carbs like crazy but i don't remember what the significance is in that, yeast overgrowth? I know now that i have a GI issue,
    growing up i didn't know it wasn't ok to go #2 every other day, suffered from severe constipation most my life.

    "LOW BLOOD VOLUME" is there a test for that? Should i put rubberband on my legs and arms to keep the blood closer to the vital organs ;cP seriously what does one do about that?


    [QUOTE="picante,] Looking at your recent experience, since you started on methylB12: You took it for a few weeks before starting on methylfolate. Perhaps you got enough mB12 in your cells that you triggered the two deficiencies that Freddd talks about, which are methylfolate and potassium. Both deficiencies have a lot of possible symptoms. You'll find the lists on page 8 of "A Guide to Freddd's Protocol".

    Read about the deadlock quartet, if you haven't yet. If you are missing one of these, methylation can become "deadlocked":
    methylB12
    adenosylcobalamin (AdB12 or AdoB12 or AdenoB12)
    methylfolate
    L-carnitine fumarate

    I started Freddd's active B12 protocol 4 weeks ago and went into methylfolate deficiency on the 2nd day (diarrhea was the indicative symptom for me). Then I went into potassium deficiency on the 7th or 8th day.

    As I ramped up each item in response to my deficiency symptoms, my lower back inflammation subsided and my neck spasms did, too. That all happened in about 8-10 days.

    There's got to be a reason you started hobbling around in pain. Are you any better since you started methylfolate? How much are you taking? And what brand of methylB12 have you been taking?

    Julie [/QUOTE]


    I started on Cyano. B12, Pyri. B6 and Zinc citrate histidinate for maybe two weeks before switching to better forms, around that time my health started to decline again but i also eat different foods such as eggs which are high in histamine, thyme made be feel almost stoned? weird, apples, oranges olive oil NAG, glucosamine and Histadien. But not knowing how long it takes something to effect me maks listing thing i started and stopped useless, I know because i have years of charts that never made much of a connection to anything. Its more of a feeling i get when i consume something and don't feel quite right, then i'll try it again a few weeks or month later. after doing this several times and feeling not right i try to stay away from it. Nightshades (which i love) xanthan gum, gluten onions (love) eggs, dairy black pepper, beans, rice, nuts, pretty much everything i use to consume as a staple.


    I have taken about 4 methylfolate pills 800mg a day since i got them highest dose was today 1600mg and yes my hip and back seem to be getting better but i also stopped different foods and slowed or stopped other supplements.

    I just sick of this sitting and waiting game i have been doing for the last 6 years, thought that once i found the root cause it would be easy to get on the right track and now i'm about 2 weeks into knowing about MTHFR and other SNP's and haven't seem to make much progress, I feel i should be running statewide marathons by now! ;c)

    Freddd is on my list to read, he/ it has come up before but no clue what its about.


    Sorry for the essay, Thank you all for the replys and i wish you good health.
     
    Last edited: Nov 13, 2014
    picante likes this.
  10. Reno

    Reno

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    Sorry cant figure out why the quotes didnt work
     
  11. worldbackwards

    worldbackwards A unique snowflake

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    Earth
  12. Gondwanaland

    Gondwanaland Senior Member

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    This sounds like potassium and magnesium deficiency.
    It can cause hypervitaminosis A.
    You can read about the importance of vitamin B1 at the Linus Pauling Institute page.
    I think the intake of any B vitamin must be balanced with the other Bs and their cofactors, esp. magnesium, potassium and zinc. Taking too much of one will deplete another one.

    PS
    I have been trying to supress this symptom as well. I think the secret is to improve the gut absorption/liver metabolism of the B vitamins and cofactors.
     
    zzz likes this.
  13. NilaJones

    NilaJones Senior Member

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    >>Why not eat beef liver daily? it was supposed to be really good for me.

    >It can cause hypervitaminosis A.

    It would also throw off your copper/zinc balance, which can be pretty bad.
     
  14. picante

    picante Senior Member

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    It's hard to know where to start with Freddd. He's everywhere (not really, just on the methylation forum, LOL). Try these:

    REVISED ACTIVE B12 PROTOCOL, initial version
    Version 1.0 06/14/12
    http://forums.phoenixrising.me/inde...tocol-with-micro-titration.17818/#post-273588

    THE 95% REASONS B12 AND FOLATE THERAPIES FAIL
    http://forums.phoenixrising.me/index.php?threads/active-b12-protocol-basics.10138/page-6#post-395419
     
  15. picante

    picante Senior Member

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    Helena, MT USA
  16. picante

    picante Senior Member

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    That's what I thought, too. 22 years of chronic fatigue/chronic pain, and I finally know what the root cause is! I started on methylB12 and ran into problems immediately. It took me a month to get a basic grasp of the Freddd concepts and order the supplements. Brands are very important, especially for the B12s.

    The problems give you the impression that you aren't making progress, but they are actually methylation start-up symptoms that you get because of specific deficiencies.
     
  17. picante

    picante Senior Member

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    I know from personal experience that this can drive a person bonkers. Have you looked at the list of high-thiol foods?:
    http://www.livingnetwork.co.za/chelationnetwork/food/high-sulfur-sulphur-food-list/

    Does this ring any bells? Taking methylB12 back in July triggered a food reaction that, up to that point, I thought was triggered solely by rBGH in conventional dairy products and by my own hormones. It's a neck spasm followed by a headache and nausea/vomiting. 1-2 days of that, usually. After reading up on MTHFR, I decided to try a low-thiol diet. It helped, but not enough. A friend said try the low-histamine diet. Well, I couldn't do both (nothing left to eat), so I switched over ... and got really sick immediately from adding in the thiols (eggs, quinoa, buckwheat, ...). When I got my thiol consumption down low enough, the episodes stopped.

    Fortunately, since starting on Freddd's protocol (the deadlock quartet), my body is a bit more tolerant of thiols.
     
  18. picante

    picante Senior Member

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    Helena, MT USA
  19. Reno

    Reno

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    I have never gotten so much help from a health forum before, usually i just get the old "you need to go see a Doc." BS.

    THank you so much. I'm in the process of moving out of the toxic valley so it may be a bit before i can sift through and respond.
     
  20. Gondwanaland

    Gondwanaland Senior Member

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    @Reno be sure to read other topics. I for instance can frequently relate to others' problems and learn a lot form the suggested solutions.
     

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