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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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    I am down 100 pounds now from where I started on May 21, 2003. I had a crisis this year when the diuretic became too effective. Whatever was causing be to put on 85 pounds of water, 2-3 pounds a day without diuretic, has healed. So one more drug is off my schedule.

    In this 10 years, I have progressively healed from CFS, FMS and congestive heart failure. In all my fall backs non of the HEALED symptoms came back. So most of my further trouble has been recurrent paradoxical folate deficiency transient symptoms, transient low potassium symptoms and SACD symptoms that are regressed to functional levels but nor perfect.

    However, this summer I was re-establishing my supplements. So now I am taking the Deadlock Quartet and the basics. I have gone off all extra B1, B2 B3, biotin and pantithine.

    1 year ago - 20mg/day of Metafolin and barely controlling insufficiency symptoms
    Today - 4mg of Metafolin has maintained me paradoxical folate insufficiency symptom free

    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

    1 year ago - stubborn abdominal organ fat (metabolic syndrome) won't come off and hadn't for decades. Today I am 30 pounds less and almost all of it was the abdominal organ fat. My body density has reached a new high. 10 years ago I couldn't sink in a pool even with empty lungs. 5 years ago I could sink with empty lungs. This year I can sink to the bottom with 2/3 full lungs. My muscles are mostly restored and look more like when I was 22. I have NEVER had the type of definition I am getting now with so much subcutaneous fat gone now. I can't keep my pants up without a belt.

    So, 10 years ago I was taking a B-50 formula twice a day and went straight to hyper response driven by b1, b2 and b3. With the 100mg/day of b1, b2, b3 it went straight to barely controllable high Metafolin and potassium. Even after I went to the B-Right I continued 100mg of b1. Finally I discontinued the b1 and suddenly the need for Metafolin and potassium quieted down.


    So for those seeking to NOT overdrive these cycles and NOT force undesirable balances, stop all the extras before starting with the Deadlock Quartet. NOW things make a lot more sense. The active b12s and folate and carnitine don't DRIVE these cycles. Biotin, B1, B2 , B3 and maybe pantithine drive these cycles and determine how the deadlock quartet are used.

    Everybody is perfectly free to believe whatever they want to. I prefer to use a working hypothesis that can change with results.

    I am starting a titration of B1 (low and slow, 25mg additional a day to start and only increase it once a month until II see when and how the effect changes.) to see the effect on CNS healing. I would like to speed that up without driving up folate and potassium needs uncontrollably.


    Mixing theories with the Active B12 protocol just gets things all messed up. Maybe hundreds of mg of b1 can be helpful with mostly inactive cobalamins (for most people, about 1% do have full healing startup effects with them) like HyCbl and CyCbl and folic acid but with the active products, B1's (and other vitamins) activity is vastly increased. I will be adding "detox" definitions as triggered by excess B1, B2 and B3 in preliminary form soon.

    Good health to all of you.
     
  2. Lynn_M

    Lynn_M Senior Member

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    What a wonderful report. Could you share how much of each component of the Deadlock Quartet you are now taking? I'm particularly looking for aB12 & mB12 information -what brand and what doses of sublingual and subcutaneous mB12 injections?
     
  3. BFG

    BFG

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    Its Good to hear about your healing.
    Freddd, would you now suggest to start with active b12 and folates before introducing the b complex? I have increased need for b1, b2, b6 and especially folate according to my nutreval.
     
  4. bertiedog

    bertiedog Senior Member

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    That is great news for you Fredd, Congratulations.

    I at last have some excellent energy, the first time in over 13 years that my energy has really come back but I am not understanding why because all I have added in to my methylation protocol which I started in 2007 is a Cynacobalamin Transdermal spray from my CFS doctor. Previous to this I have been using MB12 but never got any increase in energy. Do you believe I am harming myself by using it? It would seem so strange if this is the case because I feel so much better, I never really believed I would ever get to walk so well again.

    The spray contains 3000 mcg Cynacobalamin and this week I have also added in 1000 mcg MB12 and continued with around 650 mcg Methylfolate and 225 mcg calcium folate that is in the Basic Nutrients I take.

    I am still experiencing morning migraines almost daily but once I take painkillers they go but would obviously prefer not to have them in the first place. I still have non-functioning adrenals and am dependant on steroids plus I still need 2 grains of thyroid meds having cut right back earlier in the week and paying for it yesterday when I wasn't too good . I will stop the 200 mg B2 that I have been taking for some time because I am having problems sleeping whilst I wait for things to settle down but for me it just doesn't seem to make much sense to stop this spray when it has literally turned my life around in a way I never thought was possible.

    I am very grateful to you for sharing all your experiences.

    Pam
     
  5. Gloria H

    Gloria H

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    I'm celebrating you, your health & your willingness to share your journey with us. Thanks so very much!
    Blessings to you!
     
    cph13 likes this.
  6. Valentijn

    Valentijn Activity Level: 3

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    Freddd - It worries me when I see someone (you, currently) both claiming to have some sort of cure/solution, and then constantly having health setbacks which are attributed to other sources. The same thing happens a lot with various miracle cures like CBT or the lightning process, when someone is heavily invested in believing that they have recovered.

    While I don't disagree that B12 and folate are quite helpful (hell, I've even got an SNP that means my MTRR is at 25% of normal efficiency), unlike the psych BS, I also think it's important not to oversell the effects of these treatments that do work. We can't push ourselves too hard with ME/CFS, or we end up doing more harm than good in the long run.
     
  7. Freddd

    Freddd Senior Member

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    Valentijn,

    So tell me . i don't have the symptoms of CFS any more and haven't for some years. I don't have the symptoms of fibromyalgia. I CAN"T be diagnosed by anybody with either of those and I don't have them. I do have DAMAGE from b12 deficiency, Sub Acute Combined Degeneration and I have degrees of remission. I Have SOLVED the pragmatic cause of needing 20mg of Metafolin to have angular cheilitis so now I don't haven't had an episode of angular cheilitis since.

    Are you claiming that the symptoms of Sub Acute Combined Degeneration, of KNOWN CAUSE (prolonged b12 deficiency) are actually CFS and FMS? Are you claiming that HAVING angular cheilitis is a defining characteristic of FMS and CFS?

    Arte you saying that all the symptoms of spinal damage I have from a variety of sources (ie 3 back fractures, bulging disks, damaged dorsal horns) from car wreck injuries are also defining of FMS and CFS.?

    then constantly having health setbacks which are attributed to other sources

    Just applying critical thinking to solve the problems. It's exactly like debugging a computer program.

    And so far EACH AND VERY ONE HAS A KNOWN CAUSE. I can duplicate any and all from the effect of glutathione for instance. Glutathione can cause severe methyltrap and worsen SACD significantly in 6 weeks. I can take too much B1, B2 and B3 and put the hyper need for potassium and Metafolin back in place.

    From WEBMD http://www.webmd.com/heart-disease/heart-failure/news/20080603/heart-failure-patients-too-optimistic

    Although there have been recent improvements in congestive heart failure treatment, researchers say the prognosis for people with the disease is still bleak, with about 50% having an average life expectancy of less than five years. For those with advanced forms of heart failure, nearly 90% die within one year.

    I'm 10 years post congestive heart failure diagnosis and don't have it any more and I am not dead. WHAT WOULD YOU CALL IT? At the time I though I would only survive another year or so. My internist said "I have NEVER seen anybody else come back from so close to the edge like this"

    I AM CURED OF FMS AND CFS. I no longer put on 3 pounds a day of water without a diuretic. It started working WAY too well and caused problems. I no longer have edema. I no longer weigh 285+ pounds with 85 pounds of water. I can breath easily and my blood pressure is normal. That took 9 years to heal to the point that the diuretic was no longer needed when the Deadlock Quartet is taken by me. There is no doubt. It appears that you don't want to believe a cure is possible based on your understanding. Fortunately I don't have to depend upon your understanding or that of my 100+ ex doctors who never got a clue. I have no relapse of those symptoms. I haven't had extreme unusual fatigue in 10 years for instance, since 1 hour after starting MeCbl. I can certainly have return of b12 and folate deficiency symptoms. I have solved what caused me to have the many symptoms of FMS and CFS for decades. I was disabled for 20 years. I spent most of the summer going up and down 1000 to 2000 vertical feet each way every day and 3-5 miles horizontally. So, do you know of ANYBODY with FMS and CFS who can climb 2000 feet up and down and hike 5 miles every day? So what criteria would you use to define CURED of FMS AND CFS?

    Also, I am ALWAYS experimenting, titrating one thing or another. I am going to hit too much b1 again, but then I will know how much is too much. I will do the same with b2 and b3. So you can bet your booty that I will hit these same setbacks again but recognize it much sooner and know what to do immediately.


    I could have avoided most of the setbacks by not trying various things, by not trying to solve these things. I'm not passively sitting there waiting for somebody else to figure it out. I had find the solution to or die. It was that stark.

    Wouldn't it be a hell of a thing if nobody was allowed to notice that they have been cured and couldn't tell anybody else how? I would have gladly used this information if somebody else had figured it out. I spent 24 years after figuring out my problem waiting for the research and medical industries to present me with the solutions. Obviously if they could have they would have. However with MeCbl/AdoCbl becoming available in 1998 or so and Metafolin a few years later it became possible for me and others to solve the problem and run our own trials. So because Codex Alimentarus wasn't accepted in the USA banning these natural active vitamins I and thousands of others could experiment and be cured. On May 21st, 2003 I turned on healing. That was the clue I needed. After that it was pretty obvious. Even glutathione was very educational despite the damage to me it caused. Fortunately you can't convince me that I am not cured and so I can hike and go out and climb mountains and go boating and now that I can have medical insurance (Medicare) for the first time in 40 years I am considering going skiing again for the first time since 1987.
     
    Helen, Red04, JT1024 and 5 others like this.
  8. ahmo

    ahmo Senior Member

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    Wow, Freddd, hiking! I am so impressed!!! Reading your initial post on this thread, I'm considering lowering my B vits, but not too eager just yet, as I'm doing so well. But my exercise is limited to 8 minutes rebounding, not daily. Deadlock Quartet has certainly worked for me, after nearly 10 years o disability. Congratulations to you. ahmof
     
  9. Freddd

    Freddd Senior Member

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    Hi BFG,

    I would suggest a relatively low dose b-complex without folic acid or CyCbl twice a day. I do continue to take an additional 50mg of p5p. It doesn't appear to drive the system but to allow it to function. I would suggest to start the low dose b-complex with the morning meal before starting AdoCbl, MeCbl and L-methylfolate leaving the carnitine to titrate later depending upon how things work out.
     
  10. abporter

    abporter

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    Freddd, Even though I'm not cured, it's been 4 years since I've skied and I wouldn't mind resting up and joining you for a run or two. :)
     
    joojee22 likes this.
  11. stridor

    stridor Senior Member

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    Freddd
    Hi, First let me offer congratulations on your dogged persistence and innate curiosity.
    I am a recent arrival to this forum and should have been here a long time ago. Of the people here, I have identified with you the most. Diabetes Insipidus was part of my ME presentation, for example. Still we have more differences than similarities in all likelihood.

    I am on mB12 1 mg injections daily along with near daily allowance of B1, B2,B5 and B6 subQ- in other words just a bit of each. I also take Adb12 15 mg (about), mfolate 1+ mg a day and recently testosterone which seems to be helping.

    A recent failure while trying to decrease my pill count by switching to a multi may have been due to the B content. I do need high doses of B2 but this is due to an absorption problem.

    Anyway Freddd, I have been able to incorporate ADb12 (based on the recommendations that you made here) with good results but not carnitine (0r Q10, ribose). Anything that increases energy output beyond what I can handle is a problem. I will tentatively add B vitamins to the list.
    Has anyone else been unable to add carnitine and yet done well with other aspects of your program?
     
  12. Victronix

    Victronix Senior Member

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    I've finally made it up to a full dose of Douglas Labs B-complex with Metafolin (400 mg), after nearly a YEAR . . . but my potassium needs continue unchanged, so I'm wondering if I should scale back from the B-complex and replace half of it with straight metafolin.

    Glad to see the gains you're making. I'm doing a lot better now with this amount of methylfolate and a gluten-free diet.
     
  13. joojee22

    joojee22

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    @Freddd Thank you for the inspiration.. there is hope.. Congratulations!! what a journey..
     
  14. Freddd

    Freddd Senior Member

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    Hi Victronix,

    WONDERFUL. So gluten sounds like a key for you as milk was for me. Excellent. Follow the clues. Which Douglas labs B complex?
     
  15. Victronix

    Victronix Senior Member

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    The Douglas Labs B complex with metafolin and intrinsic factor.

    Going gluten free has really changed things for me, although I feel like I'm more sensitive to dairy now. I've been lactose intolerant for a long time, but could get away with the occasional pizza slices, etc., but now I notice the effects more. I think its just a gut microbes thing that I've never figured out. Once when I had a very strong antibiotic for pneumonia, it fixed gut issues that I'd had for years overnight, but also brought a much increased bloating that never normalized again.

    But I'm so glad to see normal T3 levels for the first time ever. I think the thing about mfolate helping make hormones is correct.
     
  16. Freddd

    Freddd Senior Member

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    Hi Victronix,

    Before my stomach and intestines normalized some with MeCbl but not rid pg IBS, (9 months before I added AdoCbl), dairy made no difference at all. It was like that all the time since about age 12, when my mother took away my eggs, bacon (MeCbl and AdoCbl, animal folate) and toast breakfast and gave me Special K (FOLIC ACID) and CyCbl . With that I got IBS for the rest of my life until Metafolin.

    Then I found it took 6 months to really heal after discontinuing dairy to the point of being able to cheat a LITTLE, i.e.. a tablespoon of parmesan cheese once a week without problem. However, some appear to remain more sensitive than that or perhaps have other causes of inflammation remaining. I am able to have butter and 40% heavy cream with NO milk.

    I had perhaps 6-8 pneumonias through the years. Zithromax worked very fast for my last one. After one each 5-7 years I haven't had one since 2 months before MeCbl, 10.5 years ago. I haven't had a strep in the same time instead of 6 per year or so. They sure messed up my digestion for months at a time even worse than "normal".
     
  17. Leon

    Leon

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    Hi All,

    My doctor has recently suggested that I start taking Coenzyme Q10 and acetyl-l-carnitine and B3 before thinking about methyl support. However, from this thread, the suggestion seems to be that I add in MeCbl, AdoCbl and Me-folate first before cofactors?

    Also, obviously I have all the markers of methylcycle dysfunction, including low Me-folate, which suggests to me I shouldn't take B3, because it's a methyl receiver. Would this be a fair assumption?

    Thanks-
    Leon
     
  18. Freddd

    Freddd Senior Member

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    Hi Leon,

    I suggest that a low dose b-complex without folic acid and without CyCbl, E, C, A, D, zinc, magnesium, trace minerals, calcium, omega3 oils, that morning or the evening before and then start the MeCbl, AdoCbl, and l-methylfolate. That is assuming you are here because of FMS/CFS/ME symptoms. The CoQ10 started with the active b12s can increase blood pressure dangerously. The ALCAR would be the wrong kind for about 90% of the people that respond to these items. And the B3 in the complex may be plenty but too much can make for an insatiable need for potassium and/or l-methylfolate.
     
  19. Leon

    Leon

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    Hi Freddd,

    Thanks for the reply. So, should the 'E, C, A, D, zinc, magnesium, trace minerals, calcium, omega3 oils' not be in place before the methylation support is begun? If not, when should these be added?

    Should ALCAR and CoQ10 come after the MeCbl, AdoCbl, and l-methylfolate? I'm confused about the order. I was settling on the idea that I should have a good base of vitamins and minerals, add in the methylation supplements and then add in cofactors ALCAR/CoQ10 once I had titrated up the doses.

    What did you mean ALCAR would probably be wrong for me? This is what my doctor suggested. Should I take furmarate?

    I thought B3 was an antidote for over-methylation, in which case it would temper the need for potassium associated with methylation support? My levels are low and my doctor has suggested 500mg per day. However, my methylfolate levels are also low, so I'm thinking that B3 will make it worse (as you allude to by making more need for methylfolate).

    Thanks for your help. .
     
    Last edited: Oct 30, 2013
  20. Red04

    Red04 Senior Member

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    Do you have an example of one?
     

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