B-12 - The Hidden Story
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Freddd
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Hi Lefti,
I take 600mg with each of 2 meals and 300mg a couple of other times. As the potassium appears to hinder absorption of methylfolate, I take the methylfolate an hour before meals or before the potassium. I take folate an hour before bedtime and 300mg of potassium at bedtime. The methylfolate appears to double the serum halflife or thereabouts of the b12s. The b12 can be taken when convenient as it is absorbed mostly mucosally. Without excessive b1, b2 and/or b3 and without folic acid or folinic acid, the timing wasn't nearly as critical as when I was always on the edge of deficiency.
I take 600mg with each of 2 meals and 300mg a couple of other times. As the potassium appears to hinder absorption of methylfolate, I take the methylfolate an hour before meals or before the potassium. I take folate an hour before bedtime and 300mg of potassium at bedtime. The methylfolate appears to double the serum halflife or thereabouts of the b12s. The b12 can be taken when convenient as it is absorbed mostly mucosally. Without excessive b1, b2 and/or b3 and without folic acid or folinic acid, the timing wasn't nearly as critical as when I was always on the edge of deficiency.
Leopardtail
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That's a great tip re the timing Freddd (Potassium and MF).
Leopardtail
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That's a great tip re the timing Freddd (Potassium and MF).
Freddd
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Hi Lefti,
It stopped working for people. Why I don't know so I can only speculate. I suspect they changed suppliers for b12 crystal. Or maybe the supplier changed something. MeCbl is not a single unique molecule. There are half a dozen or thereabouts versions with "small" internal differences. It appears to me, from running comparative tests on over 20 brands now, and more than 100 batches of injectable MeCbl from the pharmacy, some have the desired CNS effectiveness and most don't. The ones that are effective for the CNS are also very active for the body.
Hi Freddd
Is there an upper limit for methyl folate consumption. If I get spasms I take more pottasium. I have this headache today and yesterday had itching and sort of like a allergy reaction. When do you take more methyl folate? Do any of these affect BP. Yesterday I went to the dr to get blood to test pottasium. My bp the second number was 96, usally in 70s it could be because I was at doctors.
Lefti
Is there an upper limit for methyl folate consumption. If I get spasms I take more pottasium. I have this headache today and yesterday had itching and sort of like a allergy reaction. When do you take more methyl folate? Do any of these affect BP. Yesterday I went to the dr to get blood to test pottasium. My bp the second number was 96, usally in 70s it could be because I was at doctors.
Lefti
Freddd
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Hi Lefti,
The Deplin studies were done with daily doses up to 30mg of Metafolin with "generally well tolerated with side effects similar to placebo". Low potassium can cause increased blood pressure. Both low potassium and low folate can cause headaches. Sub-dermal itching would look like low potassium. Itching with bumps and lesions and skin rashes would look like low folate. Increased allergy reactions are often caused by low methylfolate. My BP is always high at certain doctors' offices and normal at others.
Version 1.2 12/08/2013
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 - Induced and/or Paradoxical Folate deficiency or insufficiency
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, Skin peeling around fingernails, Skin cracking and peeling at fingertips,
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.
Freddd
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Hi Lefti,
I relieve low folate symptoms by taking extra doses of 4mg each until the symptoms stop building and reverse, ie the burn goes out of angular cheilitis and the edema water starts coming off, usually within hours for both. For the potassium, I take 300mg with a full glass of water each 2-3 hours. If I wait longer I can not catch up because it drops out of serum so fast. Then I adjust my base dose for the next day and continue the 300mg each 3-4 hours for the rest of the day.
If I don't take the potassium often enough I get symptoms between doses.
Freddd
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Hi Lefti,
300mg hasn't so far but 500mg has sometimes. I have to take a large enough glass of water, more water for more potassium.
Leopardtail
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Lefti,
Alex and I were discussing Potassium a few days ago. People with ME can have elevated serum potassium but low potassium in cells (research done in Australia). If you can get your doctor to test red cell potassium - that will be a better indicator. Do keep in touch with your GP if taking high doses of potassium though, it does have risks if serum potassium becomes high.
Bear in mind too that potassium and magnesium work together in Mitochondria and Mag can also be low in ME patients.
Thanks.
I got a chem 7 done the other day. My pottasium. is 4.1. Yesterday I had nauseau that later turned into a headache. I took pottasium every few hours. I also took folate since I had spadms also. I was not sure my symptoms were from low pottasium or low folate. Today again I have some nauseau. Not sure how to proceed in a safe manner to releive syptoms
I got a chem 7 done the other day. My pottasium. is 4.1. Yesterday I had nauseau that later turned into a headache. I took pottasium every few hours. I also took folate since I had spadms also. I was not sure my symptoms were from low pottasium or low folate. Today again I have some nauseau. Not sure how to proceed in a safe manner to releive syptoms
Hi Freddd
Had nauseau and headache yesterday. Nauseau today. I am trying to stop b12, partly because I could not find a good b complex. The two promising ones were country life that had both methyl b12 and dibencozide but it had Calcium folate. The other one is from Thorne b complex 12 it also has methyl b12 and adnosyl b12 it has 200 mcg of Calcium folinate and 200mcg of l5 methylfolate
Is it ok to stop all b12 and take potassium and folate as symptoms arise?
Had nauseau and headache yesterday. Nauseau today. I am trying to stop b12, partly because I could not find a good b complex. The two promising ones were country life that had both methyl b12 and dibencozide but it had Calcium folate. The other one is from Thorne b complex 12 it also has methyl b12 and adnosyl b12 it has 200 mcg of Calcium folinate and 200mcg of l5 methylfolate
Is it ok to stop all b12 and take potassium and folate as symptoms arise?
Freddd
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Mag is critical. Lack can bring B12 to a grinding halt. I have never had serum potassium above 4.3 when measured and usually 3.5-3.7. I haven't had a red cell mag test. My internist follows things closely. Every time I go into low folate, as 2 days ago, when the urine pours out I lose a lot of potassium. I was up all night last night having to take multiple doses of potassium as I lost about 5 pounds of water with 3 spasm incidents. I'm finding the upper limit of B1 I can take.
People with ME can have elevated serum potassium but low potassium in cells (research done in Australia)
The question I have, is that a result of the things leading to ME or a causal factor? What do they find after somebody has recovered from all the symptoms for years? I had ME onset early on. So far an inability to synthesize the needed forms of carnitine in the body sufficiently and problems in folate metabolism appear to be causal along with a problem of transport and/or retention of B12 in CSF. The B12 problems appear to flow from the folate problems. Lack of B12 is causal to over 600 biochemical malfunctions in the body. So there are a lot of resultant problems. Basically 175 or so of my noticeable symptoms have just plain gone away leaving me with damage from the car wreck and Subacute combined degeneration and a very touchy balancing problem. To get the B12 in healing quantities into my CSF requires a serum level estimated to be over 100,000pg/ml 24 hours a day. Without that I would have been in a wheelchair 5 years ago. I got very close. My body is happy on a tiny fraction of that.
Leopardtail
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Red cell, or serum Potassium?
Where does that sit on the Labs 'normal range' ?
Leopardtail
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That's a hell of a good question and I think we would all love an answer to it Freddd. Until ME is diagnosed very quickly after first onset and biochem is tested at that point, I very much doubt we will have firm answers. As you indicate yourself multiple simple failures of Biochem can affect vast numbers of reactions.
Ultimately though, whatever caused the mess, those of us who have had ME for years decades are likely to have to take at least moderate action on multiple messes as well as fixing our own particular core problem more aggressively and longer term.
I found he combination of Potassium & Magnesium in Aspartate form worked best for me personally. In my case in an intensive six week course - BUT I did not have your Mercury Poisoning - you could be a whole different ball game.
Loss of Potassium would indicate AVP (rather than Aldosterone) might be deficient which would (ironically) further lower with reducing blood volume. What is your serum sodium like? Have you done any specific investigations into factors affecting cerebral blood flow?
I had a hell of a time myself some years ago with urination drinking 7 litres water daily on top of other fluids and having a tongue so dry it went hard (as in I could not bend it). I do know Amytriptiline can be awful for this, and raising ALCAR can help. I was bed (or couch) bound close to all of the time with it. I know if made me dreadfully ill, at that time I did not yet have a correct diagnosis (ME) hence proper investigations were not made.
Dr Christina Orr developed a protocol that (for some) is effective at restoring blood flow but it does involve a drug not all of us can take. Given the high rates of urination (sometimes) that you suffer the very high nutrient need and where you need to get them to, this issue of water metabolism seems downright critical to your personally.
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Freddd
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"Normal" is 3.5 to 5.0 +- 0.1 more or less depending upon lab or country. The low potassium symptoms appear to happen mostly with folks <= 4.3.
Freddd
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Until ME is diagnosed very quickly after first onset and biochem is tested at that point, I very much doubt we will have firm answers
Then they need to test those who have corrected the symptoms, not test results as those are corrupt. They need to test a population that have zero intake of folic acid, CyCbl and/or HyCbl and instead are taking active b12s, methylfolate and the effective form carnitine and have none of the symptoms remaining.
Loss of Potassium would indicate AVP (rather than Aldosterone) might be deficient which would (ironically) further lower with reducing blood volume. What is your serum sodium like? Have you done any specific investigations into factors affecting cerebral blood flow?
For me that is all dependent upon Metafolin and LCF. After getting off Lasix serum sodium is midrange. Lasix causes excretion of both potassium and magnesium but not sodium potentially causing lots of problems. Part of my problem was that all the docs were blinded by severe chronic pain which was "untreatable" as long as they wouldn't prescribe opioids for chronic pain. Once I was on morphine, MeCbl, AdoCbl and Metafolin became available, the problem became solvable, by me, not the doctors because they all believed the folate and b12 mythologies because of up to 60 years of research based on folic acid, CyCbl and HyCbl. All logic based on those is corrupt. The tests interpretations based on those is corrupt because it includes these hundreds of abnormalities as part of the norming.
I haven't investigated cerebral blood flow. However, I fit the patterns of MeCbl CNS effectiveness found in the high dose Japanese studies as do many people here. CFS, FMS, ALS, Parkinson's, MS, Supra Nuclear Palsy, Alzheimer's, autism and probably more all fir the pattern of low cobalamin in the CSF. There is also found either high CSF Hcy or high CSF MMA or both. By response there is almost always low or desperately low l-carnitine fumarate (90%) of ALCAR (10%) in addition as well as the body.
These groupings can be described as various combinations of low CSF-AdoCbl, Low mitochondrial AdoCbl, CSF-MeCbl, body serum AdoCbl, body serum MeCbl, body Mitochondrial AdoCbl (yes, 6 separate compartments for B12s as far as symptoms and half lives go), low carnitine and low l-Methylfolate. They can also be described in terms of (same compartments) as well as "triage levels" of partial methylation block, methyltrap and partial ATP block. Both of these description sets each predict symptoms and responses to the Deadlock Quartet. Of course actual damage and tertiary effects are confounding factors.
I had a hell of a time myself some years ago with urination drinking 7 litres water daily on top of other fluids and having a tongue so dry it went hard (as in I could not bend it).
18 months ago, after I had the folate mostly under control (75% of the time) and was on Lasix. I had lost 85 pounds of water, put on 50 pounds of muscle (atrophied over my entire body). Then with the Lasix I got way too dry and drinking didn't help that. I tapered it over a month and everything normalized. My dentist found 7 new cavities on a 6 month checkup and that was totally abnormal since I only had a limited number before in damaged areas (braces mostly).
Until ME is diagnosed very quickly after first onset
For a lot of people it is predictable from "non-specific" childhood symptoms that are ignored or misattributed. They start earlier and harder with folic acid in formula and added to so many foods. I'm seeing a 20+ year earlier shift and teens with early SACD symptoms. By the time "first onset" as it is currently defined occurs there is already extensive damage. A person typically doesn't notice any of the neurological symptoms until 70% of capacity is gone.
I would really love to have a raw database with a million or so folks with high resolution symptom tracking (across decades, since birth) plus labs, side effects and things like that. I'm designing one that will take all of that and find the patterns that matter. Statistics are too blunt an instrument and hides all the important information and causes dysinterpretation. Folic acid and CyCbl/HyCbl predictably cause blindness, in the researchers and practitioners. WATSON looks like it might work if given the correct information on this problem.
The misdiagnosis history and how the practitioners treat (and I don't mean medically) people are also predictable of these active vitamin deficiencies. It's All In Your Head (IAIYH) and treating patients as PITAs is quite predictable because of the neuropsychological effects. Also, at least here in Mormon Utah I have been kicked out of practices for "lying" to the doctor about being an alcoholic. After looking at my blood profile (all in normal range, but barely) in years gone by they would question me about drinking. I would start to say "About a six pack ..." and they would interrupt me in mid sentence and say "per day" and I would finish and say "No!, Per year". I couldn't tolerate alcohol so I rarely had as much as half a bottle of 3.2 beer.
They also almost always asked "Do you have trouble with inadequate blood clotting" which I never did but they always asked. The also said at first glance "B12 deficiency" but after tests and history would say "Impossible to be b12 deficiency". I was taking CyCbl and folic acid daily. They cause no visible test abnormalities because they are most of the norming population.
On the first HMO software I consulted on, about 1978 or 79 I suggested such a database and they asked me if I was crazy. At the time hard disk space was very expensive and measured in megabytes and my design was impossible to implement due to hardware limitations. I cut way back but still implemented the data mining for predictable preventable items like neural tube defects. The problem there was that l-methylfolate wasn't available until less than 10 years ago and folic acid was only partly effective. That was obvious then, too, when looking at the database. However, pre-natal vitamins resulted since it wasn't politically correct ("insulting to imply poor diet") to point out the people that clearly needed them. With multi terabyte hard disk space on a PC (Personal Cray?) microprocessors with gigabytes of RAM it is quite doable and affordable now.
I also had pinned down than one of the problems was CyCbl and that wasn't fixable. MeCbl was about $1000/vial of 10mg available for research in France.
As insulin affects the serum to tissue transfer of potassium how does that affect you in all this?