Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Diet and Freddd's protocol

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Nikki7, Dec 21, 2015.

  1. Nikki7

    Nikki7

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    @Freddd
    And others---I am curious to know if there's any specific diet you followed...or that works best. I've done anti-candida diets with mostly protein, vegan ones, etc in the past. When I started the protocol, I immediately felt the need for carbs (which I normally limit). I've felt like I'm starving. Any thoughts? I'm sure my body finally working harder is causing hunger. I don't want to eat anything that hurts me. Thanks so much!
    Also, in first couple of weeks is it normal to feel mentally more alert/awake but just not physically there?
    Thank you!!!
     
  2. Freddd

    Freddd Senior Member

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    Hi Nikki,

    It is common enough. That happened to me in the first hour. It took a while to get my body working better. I was 5-6 years into healing when I got my nutrition turned on in the body in a way needed to restore my muscles. There are an unknown number of "internal triage levels" but I would guess I could define 7, 8 , 9 or something like that, depending upon how one defines the levels. For instance epithelial tissues, endothelial tissues, muscles, kidneys, Heart, CNS-functional, CNS healing, and so on. Also, actual cell making healing takes energy. A lot of people get suddenly hungry. Anorexia of a couple of different sorts, are also B12 deficiency symptoms because of nausea, paralyzed gut, inflammation and irritation, of gut, alterations of sense of smell and taste, distortion of smell and taste, hallucinations involving up to several senses. For instance I could smell and feel a summer sea breeze, smell it and feel it in my basement in Utah in the middle of the winter.


    I wouldn't be surprised if you start getting low potassium and/or low folate symptoms (some triage levels) in a day or 3. Be careful. Have potassium on hand.

    Version 1.4 09/25/2015

    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with CyCbl (Cyanocobalamin) it is very common with MeCbl (methylcobalamin) and AdoCbl (adenosylcobalamin) and less so with HyCbl (Hydroxycobalamin).

    There does not appear to be a clear order of onset. The order of onset varies widely from person to person but many appear consistent for each episode for any given person. There tend to be more and more intense symptoms as it gets worse. Some people have ended up in the ER because of not recognizing the symptoms.

    IBS – Steady constipation, Nausea, Vomiting, Paralyzed Ileum,

    Hard knots of muscle, Sudden muscle spasms when relaxed, Sudden muscle spasms when stretching , Sudden muscle spasms when kneeling, Sudden muscle spasms when reaching , Sudden muscle spasms when turning upper body to side, Tightening of muscles, spasms and excruciating pain in neck muscles, waking up screaming in pain from muscle spasms in legs. Muscle weakness

    Abnormal heart rhythms (dysrhythmias), increased pulse rate, increased blood pressure

    Emotional changes and/or instability, dermal or sub-dermal Itching, and if not treated potentially paralysis and death.


    Group 2a - Both

    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation


    Group 2b – Either or both

    Headache, Increased malaise, Fatigue



    Group 3 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels


    These symptoms appear in 2 forms generally, the milder symptoms that start with partial methylation block and the more severe symptoms that come on as partial methylation block gets worse or very quickly with methyltrap onset.

    Edema - An additional thing I would like to mention. I would never have found it without 5 years of watching the onset of paradoxical folate insufficiency and trying to catch it earlier and earlier and to figure out what was causing it and to reverse it. For me the onset order goes back to the day of onset now with edema and a sudden increase of weight. I noticed that within 2 hours of taking sufficient Metafolin I would have an increase in urine output.


    Old symptoms returning

    Edema

    Angular Cheilitis, Canker sores,

    Skin rashes, increased acne, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,


    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
    Headache, Increased malaise, Fatigue


    Increased hypersensitive responses, Runny nose, Increased allergies, Increased Multiple Chemical Sensitivities, Increased asthma, rapidly increasing Generalized inflammation in body, Increased Inflammation pain in muscles, Increased Inflammation pain in joints, Achy muscles, Flu like symptoms

    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract,

    Coated tongue, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Increase irritability, Heart palpitations,


    Longer term, very serious

    Loss of reflexes, Fevers, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, bleeding easily




    Group 4 - HyCbl onset, degraded MeCbl onset, MeCbl after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
     
  3. Nikki7

    Nikki7

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    @Freddd
    Thank you for sharing info! Two weeks into this I am really unsure how to tell if I need more methylcobalamin or methyl folate (or less of one) and how the two relate. I am drinking lots of coconut water. I'm doing the 3000mcg methylcobalamin, 1000mcg adenocobalamin and approx 500-600 of methyl folate. I know we have to go by how we feel, but I'm all over the place. Should I try and find a ratio for me before adding l carnitine fumerate? I am trying to understand...the methylcobalamin will always require methyl folate, right? Will it level out at some point? Or will taking one always throw the other off? I'm unsure how to tell if u need more Methylcobalamin or if you're having an issue with needing more folate?
     
  4. Freddd

    Freddd Senior Member

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    What new or increased symptoms have you had since you started? See below symptoms.

     
  5. Nikki7

    Nikki7

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    @Freddd
    My joints feel swollen as does my entire digestive system...but they don't look like it. I think this is nerve related maybe. IBS C seems worse.
    Emotional issues (being over emotional) I felt at first seemed to have cleared for now
    Overall deep fatigue feeling...more than usual
    Increased acne
    Achy muscles
    So this means I need more methylfolate or to go down on the methylcobalamin?
    Thx!
     
  6. Freddd

    Freddd Senior Member

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    Hi Nikki7

    Based on my experience and observed experiences in how these things work I would think that decreasing MeCbl will do no good at all and increasing Methylfolate about 50 to 100% each day with 3 or 4 doses per day. That's what worked for me. Potassium is also a possibility. Find your symptoms in the groups 1-3 lists.
     
  7. ahmo

    ahmo Senior Member

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    I've found my adrenals are helped by a high fat diet. I also discovered that I cannot eat green veggies, as vegetable folinic interferes w/ my folate absorption. This may be linked to specific snps, I don't know.
     
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  8. Nikki7

    Nikki7

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    Thank you @Freddd ---I'll do this.
     
  9. Nikki7

    Nikki7

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    @Freddd
    I tried increasing the methyl folate,and I felt awful...an emotional mess and felt more swollen. I've stayed on top of potassium. Do I push through or give it a rest?
    I'm confused to know when to up things...only two wks in!
     
  10. Freddd

    Freddd Senior Member

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    Hi Nikki,

    By swollen do you mean gathering water in your body. Can you please describe the exact nature of the emotional mess. How soon after you took the methylfolate dose did it happen? I went through a ton of both of those, ie depression, anxiety, irritation, anger, rage, there was a switch that many of us have called Dr Jekyll and Mr Hyde to illustrate the quick change. There are different causes for different items and untangling it is the problem. How quickly each of these occurs is also an indication of what it is. It's like finding one's way through a maze, not a matter of pushing through. It's learning. So for instance, my putting on 2-3 pounds of water a day indicated one thing, anxiety another and "generally irritable something else yet again typically. This is a very complicated maze and it's easiest to navigate when as many variables are simplified, eliminated and/or standardized as possible. Time after dose is also an important aspect of determining what is what. Combinations are critical

    Do you take folic acid, folinic acid (related folates and folinates ie calcium folate of folinate), veggie b-complex, green drinks, vitamins added yeast, whey, glutathione, NAC (in any of multiple forms), vitamin drinks.

    How much of each B1, B2 B3 and inositol do you take from all sources. There are all sorts of things that trow in a little of some of the b-vitamins and they accumulate. White flour products can cause severe problems for me for instance.
     
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  11. Nikki7

    Nikki7

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    @Freddd
    I believe the swelling feeling could be water-felt this way quickly after taking methyl folate. Emotionally, I want to cry/feel very sad very soon after taking more methyl folate. This is happening fast. The only folic acid I take is in one of my b vitamins. It's 400 mg...I've not noticed a bad effect, but I plan to eliminate it and have ordered supps without it. I don't do added yeast, wheat, or anything like it. I've been a mainly meat, fruit and veggie eater for years. I eat salad and greens some but am trying not to do tons. I've read your info on this. No NAC. I just take a b complex with thiamin 40mg, riboflavin 28.6mg, niacin 80mg, b6 208.6mg, 5methylfolate 200mcg, b12 100mcg, biotin 80mg, and panthotgenic acid 45 mg, choline citrate 40mg (Thorne b complex 6).
    Any insight you have is great. I'm hanging in there on protocol...just trouble knowing what to do next. I'm super sick...have been 6 years now pretty badly. Will you consult? I'm 37 and want to make it through this (have two little boys) whatever it takes.
     
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  12. picante

    picante Senior Member

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    Do you mean the 5methylfolate in the B-complex you listed? That's different from the "folic acid" Freddd's talking about. Methylfolate is an active form. Folic acid can actually interfere with the active form. That's why he's asking you if you're taking any.

    BTW, I have horrid symptoms these days when I try & raise my methylfolate. I'm on a very tiny amount because I get the depressed/sad/blue feeling you get. Taking niacinamide makes it go away. B3 (whatever form you take) is so important for cognitive function and mood. It's being prescribed to Alzheimer's patients.

    A lot of people here on PR take B3 to "mop up" excess methyl groups when they overdo the methyl supps, but I think the B3 is actually doing something besides that, even if you don't have excess methyl groups.
     
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