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Ten Years of healing: No more congestive heart failure, FMS, CFS and minus 100 pounds

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Oct 11, 2013.

  1. Freddd

    Freddd Senior Member

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    NatureMade B-complex with Vit C. List no. 1338 sku 31604 01338
  2. Freddd

    Freddd Senior Member

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    Hi Leon,

    What did you mean ALCAR would probably be wrong for me?

    While ALCAR is popular, for those with CFS/FMS/ME when trying a carnitine to partner with AdoCbl for the mitochondria, L-carnitine fumarate works obviously well for about 90% and not at all for the other 10%. For the other 10% ALCAR works obviously and well and LCF not at all. Why, I don't know. I suspect that one of the things that hits us in out energy metabolism (causing a chronic fatigue) is not being able to synthesize LCF (the actual kind used in body to transport fats to mitochondria) from amino acids. That too might be some genetic reason why we have CHRONIC FATIGUE. Also, the CoQ10 needs to held off for perhaps a year to avoid BP problems. These are based on my and others direct experiences. They have been confirmed over and over by other people. You might be one of the 10%. However, one needs the other 3 of the deadlock quartet in place before trying LCF since neither would work without the others anyway.
    Leon likes this.
  3. Victronix

    Victronix Senior Member

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    1 year AGO - 3000 mg/day potassium barely maintaining
    Today - 1500mg/day potassium adequately maintains my potassium levels

    1 year ago - CNS healing stopped and deteriorated until B2, B3 were stopped
    Today - CNS healing re-established


    Where are you at now with B1, B2 & B3?

    I've finally worked up to the full 400 mfolate but its the version with Bs in a complex and thus far I'm still having to take more potassium than I'd like, so I'm starting to try ways to see if I can impact that potassium need. I'm thinking of mixing half of a 400 mfolate-only with half of the Douglas Labs B complex with 400 mfolate to see if decreasing the other Bs could help. I also take the Nature Made B multi with C at night, and when I tried stopping that, I was waking up at night, amped up.

    It's inspiring that you decreased the potassium from 3000 to 1500 over a year, but it sounds like that was mostly after removing some of the Bs.
  4. Freddd

    Freddd Senior Member

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    Hi Leon,

    Sorry for my mangled instructions. All the basics should be in place. BUT NO COQ10, no extra b1, b2, b3. After starting the AdoCbl, MeCbl and methylfolate and having gotten stable with methylfolate and potassium, then add carnitine. If itdoes NOTHING and no startup has been noticed, or it stops startup, then stwich to the other form, Pragmatically, LCF is the form needed to transport the fats. It works for about 90% of people in our situation. On the other hand ALCAR, the most popular only works in this function for 10% of us. The odds are on LCF, not ALCAR. But if you try each (BOTH at same time don't work) you will know which works for you. The one that works is the one that may give you too much energy and you have to titrate.
  5. Freddd

    Freddd Senior Member

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    Hi Victronix,
    I am taking no extra B1, B2 or b3, just the amount in the low dose b-complex mentioned before; 10-20mg or so each per day in 2 doses. All three increased the amount of potassium and folate needed and reduced actually healing till at the end I couldn't take enough of either and healing was going backwards. I am remaining quite stable now at about 1500mg of potassium and 4-6mg of Metafolin. I have thickening of my nails again at some point some months ago when I discontinued the extras, my actual cell formation increased. The requirements for 3000+mg of potassium and 20+mg of Metafolin came down in a few days after I discontinued the extra bs.
  6. Freddd

    Freddd Senior Member

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    NatureMade B-complex with C, List # 1338. This has 15mg of thiamin,10.2mg of Riboflavin and 50mg of Niacin, 5mg b-6 and 10mg pantothenic acid.
  7. Victronix

    Victronix Senior Member

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    Thanks, that's helpful.
  8. ahmo

    ahmo Senior Member

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    I've just done a search on iherb. There are a few choices here. In addition to the 2 I've listed below, thorne also makes B Complex #6, which includes Calcium Folinate as well as L5MTF and Riboflavin as well as P5P, Adeno + MB12. And B Complex #12, which is similar to #6. I haven't looked beyond these, ie., don't know what other Thorne combos are. I did look at several other brands, these were the ones that seem to work for our needs. I'll be Going w/ the Thorne Basic, listed below, and using partial capsules. thanks for pointing the way on these B's Freddd.

    Thorne Research, Basic B Complex, 60 Veggie Caps

    Thiamin (as Thiamin HCl) 110 mg

    Riboflavin (as Riboflavin 5'-Phosphate Sodium) 10 mg

    Niacin (130 mg as Niacinamide and 10 mg as Niacin)140 mg

    Vitamin B6 (as Pyridoxal 5'-Phosphate) 10 mg

    Folate (as L-5-Methyltetrahydrofolate from L-5-Methyltetrahydrofolic Acid, Glucosamine Salt) 400mcg

    Vitamin B12 (as Methylcobalamin) 400mcg

    Biotin 400mcg

    Pantothenic Acid (as Calcium Pantothenate) 110 mg

    Choline Citrate 80 mg





    Douglas Laboratories, B-Complex, 60 Veggie Caps
    Thiamine (Vitamin B-1, as Thiamine HCl) 50 mg

    Riboflavin (Vitamin B-2, Riboflavin-5-Phosphate) 20 mg

    Niacin (Vitamin B-3, as Niacinamide) 50 mg

    Vitamin B-6 (as Pyridoxal-5-Phosphate) 20 mg

    Folate (as L-methylfolate, Metafolin) 400 mcg

    Vitamin B-12 (as methylcobalamin) 500 mcg

    Biotin 300 mcg

    Pantothenic Acid (Vitamin B-5, as d-calcium pantothenate) 50 mg

    Intrinsic Factor (from porcine) 20 mg
  9. Freddd

    Freddd Senior Member

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    Hi Ahmo,

    which includes Calcium Folinate

    That is folinic acid by another name and for some percentage causes paradoxical folate deficiency.

    Thiamin (as Thiamin HCl) 110 mg

    Too high for some people causing excess potassium use and folate insufficiency

    Niacin (130 mg as Niacinamide and 10 mg as Niacin)140 mg

    Too high for some people causing excess potassium use and folate insufficiency

    Thiamine (Vitamin B-1, as Thiamine HCl) 50 mg

    Not for twice a day, Too high for some people causing excess potassium use and folate insufficiency


    I couldn't take either of these.
  10. ahmo

    ahmo Senior Member

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    Hi Freddd. I won't be using the one w/ folinic acid. I plan to use partial caps of the Thorne Basic B. I'm really pleased they have p5p and r5p. I'm hoping to bring down my potassium dosage with this. cheers, ahmo
  11. wordweaver27

    wordweaver27

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    ahmo likes this.
  12. ahmo

    ahmo Senior Member

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    Update: I am so grateful to you Freddd for suggesting lowering B doses. Since I've cut my doses to minimal (small amounts of hi-dose capsules), I've also needed less Vit C and Ca, which I'd been using to counteract histamines. I've known that B's are high-sulfur, which I can't tolerate, but they'd been necessary. Now a glitch in my shoulder rotation has been eliminated, and I'm clear this is from the reduced sulfur, as I'd had similar connective tissue changes when I eliminated all the sulfur (high thiols) from my diet a year ago.

    I had a major elimination episode nearly 2 months ago, which I believe was metals. I was using high dosage zinc for the past year to facilitate pulling out metals. Now I've just reduced my zinc, which meant I also need less potassium and magnesium. I've also been able to reduce my thyroid (T3), LCF, ubiquinol, evening primrose, selenium. I self-test and follow my body's responses, so I trust these decreases, as I only got this far in healing by trusting the communication system I've set up with my body. At last, less is more! And I switched my B12 timing so that I'm taking adB12 with mB12 close to mfolate, and my second mB12 on it's own midday.

    Now, 4 days in a row, I "feel normal". My exercise tolerance is much better, mood better, I'm calm and positive. Today I would say that after 10 years and some months, I'm healed. I'm fortunate to live in a sheltered environment, and there's no way I could resume anything stressful, like real work. However, your B12 protocol and ongoing advice has returned me to the land of the living. cheers, ahmo
    Last edited: Nov 14, 2013
    Violeta likes this.
  13. Freddd

    Freddd Senior Member

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    WELCOME back to the world of the living, Ahmo. It's great to hear. Now a little advice from experience. No matter how good you feel you have no more capacity than you did a week ago. Build up slowly and don't overdo it. However, exercise is necessary for proliferation of mitochondria in the muscle itself and for new growth. I increased the distance I walked by one driveway width each day, about 50-75 feet in the area I was walking. Good health to you.
  14. ahmo

    ahmo Senior Member

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    This is Excellent advice/observation. Yes, now a new sort of mental exercise, to not let my mind push me! cheers :)
  15. Red04

    Red04 Senior Member

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    @Freddd

    Have you experimented with total removing B1,B2,B3 from the protocol? Are they necessary for healing? Is there a chance that the "start-up" responses caused by the B's and were mistakenly seen for a positive reaction?
  16. Freddd

    Freddd Senior Member

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    Hi Red,

    B1, B2 and B3 are all essential. The problems is they were tried all these years with CyCbl and folic acid and they did very little. With the active b12s and folate those vitamins have a lot more kick. However, I would suggest that the lower effective limit is above the MDR. There is a tricky balance there somewhere. The difference is that with a the active b12/folate there is an upper practical limit. Hundreds of mgs casually used doesn't make it with the active vitamins even though they were pretty innocuous with folic acid and CyCbl or HyCbl. So maybe the sweet spot is in between 2mg and 20mg each dose
    zzz0r likes this.
  17. zzz0r

    zzz0r Senior Member

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    @Freddd
    I have done so much reading in a day that I got a headache. Since it is my first day in the forum. But I am only focused in methylation cycle. So please fredd explain me the following
    -After starting mb12 ,adenob12 ,methylfolate and L-carnitine how do you know that you are in a need of potassium
    -You said the b1,b2,b3 stopped your CNS from healing but you still suggest on taking them. So which is the wright way?
    -What gulten has to do with all these? Does Methylation cycle dysfaction means that you are gluten intolerant? How would you know?
    Last edited: Nov 18, 2013
  18. Freddd

    Freddd Senior Member

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    Hi zz0r,

    One can have a lot of food sensitivities, MCD, hypersensitive to odors, textures, just about anything, when folate deficiency symptoms are heavy, as with methyltrap. Gluten can make a huge difference if you are gluten sensitive, or dairy. However, if you are like me you won't be able to tell until the deficiency symptom food sensitivities go away and see what remains. If you have celiac disease gluten can make you quite ill. It wasn't until I did an elimination diet after being on MeCbl and AdoCbl for several years and at least400mcg Metafolin that the elimination diet made any difference. I can't eat cheese, milk, whey but I can have cream and a little butter.

    The potassium might start on the third day after starting AdoCbl,, MeCbl and Metafolin. This will usually start up methylation and rapid cell formation from long pent up demand. That causes low potassium frequently. If startup doesn't happen then add in L-carnitine fumarate. That limits startup to about half the levels of healing at first. That is usually more than enough to deal with at first.

    There is a lot of reading to do. It is like solving a giant maze. You get clues in the form of changing symptoms, new symptoms, strengthening of neurological symptoms and all these allow you to follow the clues of healing. The low potassium and low folate symptoms are usually the first clues and then one deals with these induced deficiencies and moves on to the next thing.

    Typically several of these symptoms will appear suddenly with more appearing and worsening over time if corrections are not made. While these groups of symptoms are called “detox” by some alternative practitioners and many people otherwise knowledgeable about vitamins and supplements, depending upon what theories they are operating under, use this term. Typically they are working on a “toxin” theory of CFS/FMS/ME/MCS etc and that these vitamins and supplements mobilize the toxins which then cause all sorts of symptoms in the groups listed. As the “translations” are made it is clear that actual “detox” if it exists, has nothing to do with these symptoms and they can be dangerous to ignore. If it is “detox” in an actual sense, then it is in what is left after these other things are accounted for and/or corrected, perhaps 5-10% of the total initial number. Also, co-morbidities often show up in this way..
    Group 1 – Hypokalemia onset. Symptoms may appear with serum potassium as high as 4.3. May become dangerous if ignored. Considered “rare” with cyanocobalamin it is very common with methylb12 and adensosylb12 and less so with hydroxycobalamin..
    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 - Induced and/or Paradoxical Folate deficiency or insufficiency
    IBS – Steady diarrhea, IBS – Diarrhea alternating with normal, Stomach ache, Uneasy digestive tract, increased hypersensitive responses , Skin rashes, Increased acne, Skin peeling around fingernails, Skin cracking and peeling at fingertips, Angular Cheilitis, Canker sores, Coated tongue, 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, Depression, Less sociable, Impaired planning and logic, Brain fog, Low energy, Light headedness, Sluggishness, Forgetfulness, Confusion, Difficulty walking, Behavioral disorders, Dementia, Reduced sense of taste, Increase irritability, Loss of reflexes, Fevers, Old symptoms returning, Heart palpitations, Bleeding easily.
    Group 4 - Hydroxycbl onset, degraded methylcbl onset, methylcbl after photolytic breakdown onset.
    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
    Group 3 symptoms, induced paradoxical folate deficiency or insufficiency are corrected quickly with titrated doses of Metafolin, methylb12 and adenosylb12. If glutathione (precursors) are the cause then larger doses of Metafolin, 7.5-15mg,or maybe more are needed. Different tissues are affected at different levels of methylfolate, it comes or goes in stages. Very strong dose proportionate characteristics are present. Serum folate levels may be high or even very high despite Metafolin responsive deficiency/insufficiency symptoms.
    Group 1 symptoms respond readily to potassium. The symptoms and response to potassium may occur at a serum level of 4.3 or less.
    sregan likes this.
  19. zzz0r

    zzz0r Senior Member

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    @Freddd
    Oh my god that is huge. So just to clarify again...
    I am starting mb12, ab12 and mfolate and then I just wait for the symptoms to show up (if they do not, i through in l-carnitine.
    Then If I get group 3 symptoms I need to titrate the dosage (what that means exaclty?).
    If I get group 1 symptoms I through in potassium instead.
    And then what? I expect everything to go away and I am dealing with what is keft?(which will be what?) I am sorry but I can not fully understand it yet
  20. Freddd

    Freddd Senior Member

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    Hi zzz0r,

    You need the basics, you know, a,d,e,c,b-complex as much discussed, magnesium, calcium, zinc, trace mineralsand probably some other items. You may respond to 1 kind or another better. You may be the 10% that respond to ALCAR instead of L-carnitine fumarate. You may find that you are using too much potassium or that nothing has started at all and then you need to go through the next set that usually gets things going, which includes more D, more zinc, etc. It is very much learning to observe your own body either just keep it humming along towards healing (desired, but if you are like most people, one thing after another can stop healing, or miss a layer or 3 of healing. It is difficult to know what isn't healing until there has been time to heal some items and one can see what remains. I suggest a daily diary to track your symptoms, ALL of them, day by day. I find Excel or other spreadsheet works great. How much worse or better or whatever is meaningful to you. Sometimes some changes can only be noticed about once a week or so since they change slowly. Why would you not continue to read and seek ideas. It is a process, not a formula. I had 200 symptoms or so when I started. Now I'm down to about 30 or so that I have to deal with, mostly all pain or neurological, from various damages.

    Keep reading. The only thing that will determine exactly what you do is what your body does and then what decisions you make seeking information in various ways. It takes some genuine effort to recover from CFS/FMS or whatever the mystery disease is being called.

    Titrate means change dose. So if you need potassium by the symptoms you might start 3 tablets with a glass of water. Repeat each couple of hours until you have enough to stop the symptoms. You will likely need the same number plus some the next day. I take 6 tablets with each of two meals and often a bedtime 3 tablets. If I'm having spasms and such, then I would take another couple of doses during the day.
    sregan likes this.

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