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Getting back to balance

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Jul 8, 2013.

  1. Freddd

    Freddd Senior Member

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    About the last year things have been going wrong and changing. And then there were the mysteries. Somewhere around the end of last year apparently my kidneys started doing what they do better. What I had happen was a drying of my throat, mouth, raspy voice and higher potassium loss. This started to affect my teeth After some research and consideration I started tapering Lasix, a diuretic. It has been 8-9 years since I had discontinued a dozen or so other medications and I kind of forgot about the possible need. After all, I was down to my hormones and pain meds and a diuretic. I thought I would likely have that the rest of my life. The last two visits my internist had mentioned that I had no edema in evidence. I have been tapering Lasix the last couple of months, going back down the same dose schedule I had going up decades ago.

    When taking the Lasix I was never comfortable in hot weather. We had a week of triple digit temperatures to 105 this past week and more for next week. I'm doing a little better in the heat now than before but not great, never was great in the heat. I wilt at 90. 105 is just crazy. Fortunately the swamp cooler was able to keep it below 75. However, the switch burned out in the evening of a 104 degree day and the best I could do that night was a fan.

    failure specialists also treat conditions that may aggravate your underlying heart problems, such as sleep apnea, thyroid problems, anemia and other blood abnormalities.


    In the past 12 months my thyroid was adjusted upwards minimally twice. With Paradoxical folate deficiency under the best control of my life, I'm farther below the borderline of macrocytic anemia than I have been in decades. Who knows what all the factors are.. My edema and congestive heart failure started noticeably improving first with AdoCbl added to the MeCbl and then improved more with L-carnitine fumarate and then Metafolin.


    http://www.doctoryourself.com/congestive.html
    The excerpt (below) from an article by the US National Institutes of Health is admittedly quite depressing. When you’ve finished reading it, I recommend that you then read this entire webpage again, from the top.
    National Heart, Lung, and Blood Institute
    National Institutes of Health Data Fact Sheet:
    Congestive Heart Failure in the United States: A New Epidemic

    An estimated 4.8 million Americans have congestive heart failure (CHF). Each year, there are an estimated 400,000 new cases.

    CHF is the… most common diagnosis in hospital patients age 65 years and older. In that age group, one fifth of all hospitalizations have a primary or secondary diagnosis of heart failure.
    Incidence of CHF is equally frequent in men and women, and annual incidence approaches 10 per 1,000 population after 65 years of age. Incidence is twice as common in persons with hypertension compared with normotensive persons and five times greater in persons who have had a heart attack compared to persons who have not…

    Survival following diagnosis of congestive heart failure is worse in men than women, but even in women, only about 20 percent survive much longer than 8 to 12 years. The outlook is not much better than for most forms of cancer. The fatality rate for CHF is high, with one in five persons dying within 1 year… CHF remains a highly lethal condition. With the use of angiotensin-converting enzyme (ACE) inhibitors as a possible exception, advances in the treatment of hypertension, myocardial ischemia, and valvular heart disease have not resulted in substantial improvements in survival once CHF ensues

    I am now 10 years post CHF diagnosis and at that time I had had it for at least 5 years.

    My internist said "I have never seen anybody this close to the edge who has recovered".

    So for the past 10 years he has watched as first MeCbl, then AdoCbl, low dose Metafolin and L-carnitine fumarate all stopped the neurological deterioration that had me very close to a wheel chair, I've lost 85 pounds of water, 40+ pounds of fat and put back on 40-50 pounds of muscle restoring my muscles to what they were way back when instead of almost nothing left of them after decades of unable to grow or really repair.

    So now my kidneys are working the best in 20 years or more. My muscles are back and now I am finding out ever so much more about the b-vitamins.

    I have been doing a re-titration from the ground up. I have found that a relatively low dose b-complex without folic acid or CyCbl twice a day is least likely to cause problems. The MeCbl, AdoCbl, l-methylfolate and B6/P5P deficiencies appear to limit the methylation and ATP production but not to drive it. B1, B2, B3, Biotin and maybe pantithine (and maybe others) appear to "drive" the methylation and ATP functioning in an unbalanced way. Now for the first time since starting vitamins (or before for that matter) I don't have angular cheilitis and it has stayed away for 6 weeks. The deepest layers at the corners of my mouth that were dark red are being lifted up from beneath and sloughed off. Prior to this I had a 2 week cycle of folate insufficiency that NOTHING would affect complete with putting on 10 pounds of water and then going into low potassium as it reversed along with the angular cheilitis and IBS. The culprit in this appears to be 100mg of B1 daily in addition to the small amounts in the b-complex. Pantithine might have a role there as well so it is not fully clear. As previously found B2 can drive the low potassium-folate insufficiency cycle beyond all reason and B3 appears to work with that too.

    At this point I have a modest amount of whole body healing going on except for the CNS. I am re-titrating to find what level of Metafolin I actually need now and the same thing for potassium. On the B-complex items I would be inclined to titrate the B-vitamins components at perhaps 5mg twice a day for a couple of weeks at least before going up in dose. The effects can be slow and subtle in showing. A lot of the weird side effects appear tied to these large unbalanced doses of the various b vitamins. As the basic vitamin research has NEVER been performed with active B12s and active folate, all these vitamins are far more effective and potent than the research based on CyCbl and folic acid showed which was that vitamins don't do much of anything and may damage you. At this point.

    I think that the potential interactions of the b-components are completely unknown and what they did with HyCbl, CyCbl and folic acid are not predictive of what they do with MeCbl, AdoCbl and L-methylfolate. When I first said that each item has to be re-titrated as other items are added I was told it was too much work and too complicated. In the past 5 years I have come around to the same "re-titrate" regularly as I was saying 5 years ago. I have been unable to find an "easy" or "simple" way and that doing so can really mess things up. Half the trick is the methodology. At this point I am being very cautious to let the slow and steady healing keep going again. And you know, having the last symptoms of congestive heart failure go away is quite a pleasant surprise even though it has caused me a lot of problem in the past 6 months and $2000 worth of dental work from extreme dry mouth.
     
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  2. caledonia

    caledonia

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    Good to hear you've made more or less miraculous progress on your CHF.

    I'm having a similar problem with magnesium instead of potassium - need for magnesium overdriven beyond all reason. I've stopped all methyl supps and B complex vitamins temporarily to get things to calm down. Then I will need to re-titrate.

    Are you suggesting that instead of taking a B complex, that it would be better to take all the B vitamins separately, so you can customize the balance to your needs? Or that you would simply limit the amount of B complex based on the particular B vitamin that needs to be the lowest, such as B2.
     
    L'engle likes this.
  3. Freddd

    Freddd Senior Member

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    Hi Caledonia,

    This b-complex business is suffering terribly from all the bad research done on CyCbl and folic acid. When I was taking CyCbl and folic acid, like a lot of people, it mattered not one bit whether I was taking a B-25 or a B-150 complex or any fancy or huge or anything B-complex. None of it did much of anything and all seemed pretty innocuous. My mistake is that I didn't even question, outside of a more balanced B-complex rather than an arbitrary number of mgs of everything like 150mg or 50mg or whatever. One time I went off the b-complex and it took months off it before taking a dose di anything at all. When I then took a B-50 complex my "beef red burning tongue" (yup, b12 deficiency symptoms" was the ONLY symptom out of hundreds that had any change at all, and that only a just barely noticeable difference. Going on that was what pointed me at B12 finally and convinced me to go buy some MeCbl.

    That is pretty pathetic that not a single other b-complex member or the whole complex had any effect at all. Now with the deadlock quartet, done that way there probably isn't one b-vitamin that wouldn't make a very noticeable difference. That was one of my first comments of amazement. Methylb12 made everything more effective. At this point I am in favor of a very basic b-complex such as the low dose one I'm using, and then after basic healing is established, titrate the other b-vitamins slowly each in turn, by 5 or 10 mg. See which ones make a noticeable difference and keep a daily diary. That is the only way you will know when something sneaks up to you after a few weeks.

    As far as I can tell it is the B1, B2, B3, Pantithine, biotin and who knows what else, that DRIVE how far many of these things go in a lopsided way, losing the healing. When one is working from a stance of basic healing happening then one knows when healing stops that something has gone wrong or it strengthens or it makes a weird left turn into nowheresville. The AdoCbl involvement in methylation is indirect in that without ATP no methylation will happen but it doesn;'t drive the methylation. Biotin appears to drive the ATP reactions possible harder in some people than is optimum. B1 and B2 appear to drive need for both potassium and more folate without providing the general healing. That stops when it goes wrong. The healing is a sweet spot that takes careful balance to stay aboard.
     
    L'engle likes this.
  4. Freddd

    Freddd Senior Member

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    The difference in all this is that some B1 and others are all needed and that there is an optimum range and then more things start going wrong. For instance, Up to a certain point B1 is needed for turning on generalized healing but without 100mg more than the complex, my need for methylfolate and potassium have decreased, but just where that point is,, at the moment is not clear. Also, the two week cycle of paradoxical folate insufficiency with a cycle of putting on water and dropping potassium on the way down as well as the cheilitis and IBS. I have no idea why 100mg of additional B1 would both accelerate healing (after MeCbl only) but also makes it do so in a stop and go cycle on about a 2 week schedule with terrible headaches and other symptoms before MeCbl.. The 2 week cycle goes back 25 years at least, and I was taking a B-50 with 50mg of B1 twice a day. I wonder if that could be a factor in that 2 week cycle even then without the Deadlock Quartet?

    After 10 years I have more questions than ever. The difference is that the questions are getting finer grained. It turns out my reasons for choosing B-Right was right on in many ways except folic acid. It was a very complete moderate dose well balanced complex suitable for twice a day dosing. It would be just so easy to go back to it if they would only get rid of folic acid. My reasons for choosing it was because of the approximate balance of the b-components other than folic acid and MeCbl.
     
    L'engle likes this.
  5. Freddd

    Freddd Senior Member

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    In looking at this group of vitamins, and that in the past few months I have been introduced to "B1 detox", "B2 detox" and "B3 detox" when taken in sufficiently large doses. A B-50 twice a day or even more, B-100 and B-150 type supplements could be causing all sorts of symptoms for all sorts of people not to mention large doses of individual items.

    Interestingly, the extreme sensitivity to missing a dose of Metafolin seems to have decreased. Missing a single dose doesn't fire up the worsening of angular cheilitis the next day as it did prior to dropping extra B1. Now I have some healing going on including the most persistent symptoms of my entire life with the angular cheilitis going back to early childhood. This is a new clue for me and hopefully some others. Now the trick is to keep it going and as I titrate be able to detect which way healing is going; increasing or decreasing. I now KNOW what B1, B2 and B3 are like when they start going wrong. Now I have to find their optimum levels in relation to all the others, for me.

    This balance is ever so more important when there is a sufficiency of ATP and methylation capacity. When everything is held back to starvation mode or worse; partial methylation block, methyltrap or partial ATP block, none of the other b-vitamins appears to make much difference, and I'm speaking now, not the 20s and 30s investigating B vitamin starvation because of white flour. It's in foods and drinks and all sorts of things including white flour products.

    So in days of old when knights were bold and vitamins not invented, people would occasionally feast on b12 containing items, get enough in them for a while to be able to heal and then sink back into starvation maintenance. So now instead of everything being limited by available b12, now other vitamins need balance and moderation.

    I got lucky 10 years ago that I wasn't doing anything that would keep MeCbl from in at least some levels or I might not have got started.
     
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  6. caledonia

    caledonia

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    I've been experimenting with this trying to get back into balance. It took about 4 or 5 days for the magnesium need to come back to about 7 tsp per day (still pretty darn high, but reasonable for me). Each tsp is 300mg, so 7 tsp is 2100mg. My record high is 21 tsp!

    Then I restarted B12, which for me is methylcobalamin and adenosylcobalamin, for a total of 52mcg per day. The need for mag raised by 1 tsp. I did that for several days to get stable.

    Then I added 2 Thorne Labs multi vitamins which has been my source of folate. It also has some B complex vitamins. This is a previously tolerated amount, but it caused the magnesium need to start raising again dramatically. I ended up taking 14 tsp yesterday. So I'm discontinuing that and getting back to baseline. Muscle testing is showing that 1/2 of one capsule would be an ok amount.

    I'm thinking about just trying Folapro without all the other stuff and seeing what happens.

    In the meantime, my adrenals have gotten a notch better, based on my need for salt dropping down another notch, and my need for fish oil doing the same. So based on these supplements, and where I started, and where I am now, my adrenals are about 75% recovered. Once those are 100% recovered, my need for magnesium should lessen considerably. This is another factor separate from the need for magnesium caused by methylation supps/B vitamins/"cell rebuilding" or whatever is going on.
     
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  7. caledonia

    caledonia

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    One more update. I was taking my usual 52mcg of methyl and adenosylcobalamin, with no other B vitamins. Now even foods are making my magnesium needs go through the roof. Foods with folate, such as salad greens or blueberries.

    So I'm stopping the B12 and all B and methyl supps, and avoiding those foods. I'm also taking nicotinic acid/niacin per Ben Lynch to soak up methyl groups and slow down methylation. This should fix the problem within a few days.

    Then I did some research. First off, if you're getting enough magnesium, you shouldn't run into a potassium deficiency. This would explain why I'm apparently unique in this. I was already taking magnesium in a homemade electrolyte drink before starting methylation.

    Next point, the source of the huge need for potassium and magnesium when starting methylation is leaky gut. This makes a lot more sense to me than the ion channelopathy thing Rich was talking about, or cell rebuilding or healing or what have you. I definitely have leaky gut.

    Source: MTHFRsupport.com Blog Talk Radio Episode "Neurotransmitters and Methylation with Dr. Jess Armine" March 14, 2013. Someone called in and asked the question and this is what both Dr. Jess and Sean Bean said. About 1hour 45 minutes into the program. http://www.blogtalkradio.com/mthfrs...nsmitters-and-methylation-with-dr-jess-armine

    So, if you have a huge increase in the need for either potassium or magnesium, you should suspect leaky gut and treat for that. At least that's what I'm going to do. I will stop all supps until I get that treated, and try to remember to report back on if it worked or not.

    Next point - the huge increase won't appear until you're overmethylated enough to make it happen. This will vary for different people. It could be with 1000mcg B12 or 100mcg B12. It could be within a few days or several months. In my case, it's around 50mcg B12. It didn't appear until several months later, as I started with extremely low doses and that's how long it took to get the methylation cycle spun up.
     
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  8. Charles555nc

    Charles555nc Senior Member

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    Iv Edta pretty good at dealing with CHF.

    Its also:
    -antibiofilm
    -antiviral
    -increases kidney function long term
    -anticancer
    -binds to calcium in blood vessels, and removes it

    One of the main reason men die earlier than women is that they build up iron in their bodies whereas women lose iron when they bleed. Oral DMSA might help lower your iron content (and a huge list of other metals including uranium).

    If you have any breathing or emotional problems I would also recemmend NAC which has helped alot with both, but has increased by methyl folate demand and produced a sizeable herx reaction (it kills a reproductive stage of c. pneumoniae and is also antiviral).

    Glad to hear you are doing so well!!
     
  9. sregan

    sregan Senior Member

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    caledonia did you figure this need for magnesium out?
     
  10. caledonia

    caledonia

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    As I reported above, I found out the high need for magnesium is due to leaky gut. I also started doing nicotinic acid/niacin in addition to stopping methyl supps to reduce or stop methylation. It's blowing my mind - I've been taking 6 tsps of magnesium every day for the past 6 years. - as long as I keep this up, I don't have to take any magnesium - zero, zip, nada - like a normal person.

    So my plan is to stay in this non methylation mode while going a step backwards and addressing leaky gut with a 4R gut rebuilding program. It will take a minimum of 3 months. I'm thinking, realistically though, it will be more like 6 months. Hopefully not a year, although I have seen reports of some people needing that long. I have one stool test under my belt and am preparing to do another different brand one this week so I can see what bugs I need to kill off.

    Then after the bugs are killed and my gut lining is rebuilt, it should be "all systems go" on methylation again. I hope I won't lose all the gains I've made so far while I take time out to do this, but this is how it has to be.

    I'm sure this is at least one of the reasons why Yasko says to address the gut first. :oops: At least I've had a preview that methylation is going to be very beneficial for me.
     
    cph13 likes this.

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