This is the critical paragraph for me right now, so I want to be sure I know what you're saying,
@Freddd. Please pardon my editing mania: I've put 4 sets of brackets in where I'm stumbling over ambiguity.
To paraphrase those parts: You titrated up with B1, B2, B3 and inositol (each one separately, I'm guessing?). You got to a point where potassium and/or folate became deficient. And you couldn't meet the need for potassium and/or folate (?). Backing down the dose of B vitamin (B1, B2, B3 or inositol) took care of the problem, but titrating down too far sent you into B1/B2/B3/inositol deficiency, which could also bring on the same dang symptoms (folate deficiency; did it also bring on potassium deficiency?).
This is critical because I'm tolerating 2 drops of liquid B12 (transdermally). That's tiny, maybe 120 mcg (??). But adding one more drop sends me into a potassium deficiency I can't keep up with. If I've understood you, that might indicate I need to back down on one of the Bs.
It wouldn't be B2, because I'm only taking 10-15 mg (in 2-3 doses). And B2 seems to lower my need (or tolerance) for mefolate.
It wouldn't be B3, because I'm only taking 20-25 mg, and it's necessary to counteract the ill effects of taking mefolate/MeB12 (depression, brain fog).
I just started inositol, and this problem began almost a year ago.
So that leaves B1, which I've been taking in high doses since I had an intestinal bug last spring. I take 150-450 mg/day. I often have high acetaldehyde, which depletes thiamine. My gut problems produce a variety of neurotoxins (ammonia, histamine, acetaldehyde, sulfite).
I've been at an impasse for a while: Raising niacinamide produces histamine reactions (meteorism & hot flushing), while raising MeB12/Mefolate produces depression & brain fog, which are banished with more niacinamide, which produces more meteorism, to the point where I can't eat much of anything. (No, I can't afford to lose weight.)
Hi Picante,
B1 in doses large doses increases methylfolate deficiency symptoms, severely. which basically includes all the symptoms you are experiencing. B1 drives some parts of the cycle.
The big problem in all this is that many hypotheses that conflict. The healing pathway is clearly anti-intuitive. I got put through all sorts of things that didn't work by more than 100 doctors. To me that appears to be caused by the endless research on CyCbl, HyCbl and folic acid that comes to the wrong conclusions when applied to the active B12s and methylfolate and carnitine. B12 makes all the other B12 vitamins work better, more effective so doses that were needed to force a response with CyCbl and folic acid or did nothing, suddenly work so much more tasking too much is easy. This causes cognitive dissonance. It has really helped to look at this a problem of refeeding.
I have found that I needed a whole group of the trace minerals; copper, manganese, boron and molybdenum. I have to say I can tell by some of the only symptoms I have left; neuropathic areas have gone from relatively numb to hypersensitive with burning pain. That is an earlier stage of the neuropathic progress. I've been through this with other nutrients several times now. Reactivating nerves is unpleasant and painful, whether sensory or emotional or other effects. And yet it makes me very hopeful. It is a flag along the way of healing this things. I'm going to order additional trace minerals as mentioned in refeeding studies to try after this current response settles down and limits are reached and those can suggest what next. Some of your symptoms sound like you are lacking some of the trace mineral based enzymes. However, that will clarify as you get the foundational layer of nutrients working and in balance. I do want to say that I was taking a multi-mineral tablet with many trace minerals but not as much as I started needing after the glutathione damage about 6 years ago and then some serious damage was done and wasn't healing well of fast.
Version 2.1 01/06/2016 A work in process,incomplete, use at your own risk.
INDUCED DEFICIENCY SYMPTOMS FROM REFEEDING SYNDROME. This can follow 5 days of food deprivation, anorexia, or sort of a pinpoint starvation via vitamin or mineral or amino acid deficiencies. Whatever the “most needed” item is will often cause a strong response. Not everybody has every symptoms, and different orders of appearance and grouping distinguishes different causes of folate deficiency symptoms.
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 - Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, from partial methylation block to methyltrap on 1 or more internal triage levels
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, Increased itchy acne on scalp and face, Skin peeling around fingernails, Skin cracking and peeling at fingertips,
IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation
Headache, Increased malaise, Fatigue
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.
Group 5 – Copper deficiency after methylation startup has been achieved which often starts refeeding syndrome. 50mg or more of zinc has been indicated as a possible cause. 200-400 mg of zinc has been linked to copper deficiency. Excess supplemental or environmental manganese is linked to copper deficiency. Any or all symptoms can occur at “low normal range” copper tests.
Demyelination of nerves similar to Sub Acute Combined Degeneration except that methylation and ATP startup has occurred, and copper deficiency favors damage to the upper motor neurons with perceived muscle weakness. Brittle nails. Sleep disorders. Mood (especially depression perhaps) and personality changes. Connective tissue breakdown. Spider veins. Varicose veins. Shrinking gums. Gum disease not responsive to usual measures. Unstoppable tooth decay on exposed areas without enamel. Low testosterone
Group 6 – Excess P-5-P, an active form of B6 that appears to drive hematocrit.
High hematocrit. The blood thickens and doesn’t pump as easily. Deep vein thrombosis can result. Other suspected circulatory hazards. Sometimes linked to high testosterone when lowering P-5-P might reduce it.
Group 7 – Excess B-vitamins affecting methylation
When taking the active B12/folate deadlock quartet (AdoCbl, MeCbl, Metafolin, L-methylfolate) Excess B1 - Thiamin, Excess B2 – Riboflavin, Excess B3 – Niacin and/or Excess Inositol can all produce an excess need for potassium to deal with Groups 1, 2a and 2b symptoms and/or produce an excess need for l-methylfolate to reduce groups 2a, 2b and 3 symptoms. A person might not be able to correct by taking potassium or folate and may need to reduce B1 <= 15mg/day, B2<= 10.2mg/day, B3 <=50mg, and inositol below an unknown quantity.
Group 8 – Boron.
Arthritis swelling and pain, can be reduced by Boron
https://www.organicfacts.net/health-benefits/minerals/boron.html
"Although all of the deficiency symptoms of boron are not fully understood, it is known that boron deficiency might result in the abnormal metabolism of calcium and magnesium. Some of the other symptoms include hyperthyroidism, sex hormone imbalance, osteoporosis, arthritis and neural malfunction."
Going by my experiences would indicate in cutting way back on B1 and adding AdoCbl and a microtitration on the Jarrow liquid freebase L-carnitine, starting at approximately 100 mcg orally divided into 2 or 3 doses. This will start up, at some point, the other half of the deadlocked methylation/ATP cycle, the brain reacting very early on and can cause all sorts off emotional reactions as it starts generating ATP in the neurons. In some people it appears to affect dopamine. These people often have an unusual degree of anxiety that is worsened temporarily if one titrates to high to fast. For it got rid of the remnants of depression very quickly. However, all sorts of things contribute to causing depression. Actually correcting these things can be very unpleasant They both need each other and there is a reasonable chance that this can start changing the metabolic results you are presently having. Getting into a better balance with this might be difficult. The AdoCbl usually is of the least direct effect of the 4. L-carnitine on the other hand can have extreme effects however, it is almost a direct dose relationship. It is the only one of these 4 that has that characteristic so it allows a practical titration that is relatively easy once you get practiced. It is the missing item to turn on healing in a whole lot of the triage layers. The ATP is required to take advantage of the products of methylation completing the results instead of leaving a cell stranded in midstream and misbehaving.
I know I'm not explaining this well. I can only infer what is happening. I have tests done by my doctor but so often I am "in range" despite "clear as the nose on your face" symptoms that respond to each of these trace mineral nutrients within 24 hours. I don't have to take it on faith because response is so prompt. The current "most limiting factor" response is rapid however onset can be very gradual and insidious.
Each person has to be able to track their symptoms and responses to do it by "refeeding syndrome" hypothesis. However, this is something that while the definition isn't agreed upon, is really a series of induced deficiencies (what was adequate while your body is breaking down isn't sufficient to heal). There is much genetic variations in all this but that doesn't really appear to help solving this problem yet and with theory based on CyCbl, HyCbl and folic acid research, they often get things backwards or inside out or otherwise non-functioning.
Doing it by the symptoms as they change and appear seems to get the order right generally. It's learning to listen to your body and interpret it in a way that works to correct it.
The thing to remember is that anything is wrong in the wrong order. Something that doesn't work at point A might very well be the answer at point X. Don't get married to one thing. As long as you get enough potassium you can try changing things as fast as you get a read on what is happening.
Most improvement of symptoms will start changing on day 1 and by day three or four refeeding syndrome symptoms start being apparent and by 30 days the improvements can all disappear again in worsening refeeding symptoms. I remember back in 1978 I said "I need to know how to make all those responses to B12 that the AMA is dismissing as placebo effect happen reliably and repeatedly and last.". Following their logic makes it impossible to recognize the real healing at the beginning so it is always bypassed. The "logic" of B12 and folate based on CyCbl, HyCbl and folic acid is a logic trap. It's tragic. It explains away and ignores most of the B12/folate deficiency symptoms responses. The logic that was developed on contagious diseases and drugs fails on this task.
