Freddd
Senior Member
- Messages
- 5,184
- Location
- Salt Lake City
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.
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.