Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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I strongly need help!

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by girlfromeurope, Aug 4, 2014.

  1. Eastman

    Eastman Senior Member

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    Edema may be a sign of heart failure. Have you ruled that out?

    Heart failure is one of the classic signs of vitamin B1 deficiency, but cognitive performance and mood have also been reported to be improved with B1 supplementation. And Dr Derrick Lonsdale has successfully treated swollen glands with B1.

    I am bringing up the possibility of B1 deficiency because among members here who have reported problems after starting the methylation protocol, several report that their problems appear to have been corrected by taking vitamin B1.
     
  2. Iain123456

    Iain123456

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    Firstly, Fred I must say thank you for the time and efforts you have put in to help others like myself.

    My feeling is that I did not initially have problems with b12/folate deficiency despite the MTHFR mutation because I have never felt anything from high dose mb12, ab12 5 star, metafolin, up to 25mg per day, even with the various cofactors, except some edema and the swollen lymph nodes as I mentioned. The b12 protocol was just something I wanted to try to see if my brain fog would be cured.

    The only thing which has really had some effect has been zinc, which reduced the amount of sleep I required, rapidly increased bone density and capacity to put on muscle mass (likely via increases in GH and testosterone). Because my initial blood tests clearly showed abnormal b6 uptake into tissues, lead toxcity (since removed) and zinc deficiency, I have held the belief that pyourlia type treatment would be best and I am implementating that with other b vitamins. Nothing significant yet but I am in the midst of fine-tuning for any induced deficiencies from high dose P5P etc.
     
  3. Iain123456

    Iain123456

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    Thanks for the help Eastman. I would not think heart failure would arise a few days after high dose mb12 and I am 26, I have never had similar symptoms. Prior serum blood tests showed decent thiamine levels. Would it happen that quickly is what I am thinking. The edema seems to be mostly cured by good P5P intake.

    B1 is certainly something I have thought about greatly and continues to be something I have to balance with zinc/P5P because of its antagonism. I have tried high dose thiamine HCI up to 3g per day for a few weeks and I did not notice anything beyond remedying certain immediate symptoms such as overwhelming tiredness which was clearly apparent from high dose P5P antagonism of the vitamin etc. Is there something I am missing from this? I have read the other threads on b1. I have always took Thorne active b complex with it, magnesium, zinc etc. Many thanks.
     
  4. Freddd

    Freddd Senior Member

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    @lain123456,
    I used to have 85 pounds of excess water on me. I got rid of 45 pounds twice, each time in a month. Then I discovered the tie in. When I took MeCbl, edema would start as I get methylfolate deficient. It is one of my earliest refeeding syndrome deficiency symptom. It can be brought on by NAC, glutathione (methyltrap) or folic acid, folinic acid (partial methylation block), and l-methylfolate (and/or MeCbl, and/or AdoCbl and/or L-carnitine and a few other things) as paradoxical folate deficiency which is healing in some compartments and deficient in other compartments.


    Version 2.21 12/06/2016 A work in process, incomplete, limited testing, people come in many variations, 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. The first usual notable symptoms occur on typically the third day of starting a previously insufficient nutrient. For instance it was noted in the 50s with injections of B12 with potassium deficiency (hypokalemia) as a side effect. It is dangerous and can be unpredictably fatal if not corrected and the cause is continued. When they say people are dying in Syria after they have been starved and given food, they are often suffering REFEEDING SYNDROME. When previous symptoms return

    Group 1 – Hypokalemia onset. Often called “detox”. 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 hypokalemia and l-methylfolate deficiency
    IBS – Diarrhea alternating with constipation, IBS – Normal alternating with constipation

    Group 2b – Either or both hypokalemia and l-methylfolate deficiency
    Headache, Increased malaise, Fatigue

    Group 3 - Induced and/or Paradoxical Folate deficiency or insufficiency, partial methylation block to methyltrap on 1 or more internal triage levels. Frequently called “NAC DETOX” or “GLUTATHIONE DETOX”. Can be caused by folic acid, folinic acid and for some people, like me and quite a few others, excess vegetable folates. Further excess B1, B2, B3 and/or inositol can increase methylfolate deficiency symptoms. Methylfolate, MeCbl and just about anythjing else that starts healing can cause the folate deficiency symptoms.

    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 in a general sense, a person may have had onset of these hundreds of time if they are on the borderline
    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, painful cracks in the skin at the corner of fingernails at approximate right angles to nails, can take months to occur and it may be only non mood or neurological symptoms.
    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 insufficiency.
    Arthritis swelling and pain, can be reduced by Boron
    Contribution to fatigue, neurological effects.
    Runaway tooth decay
    Loss of calcium in bones and teeth

    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.
     
  5. NotThisGuy

    NotThisGuy Senior Member

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    Germany
    @girlfromeurope

    So how are things going since u started this thread?
    I feel like I'm in the same place as you were and still looking for clues how to get out of it.

    Did you somehow manage to tolerate vitamins again?
     
  6. Freddd

    Freddd Senior Member

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    @lain123456,
    "I used to have 85 pounds of excess water on me. I got rid of 45 pounds twice, each time in a month. Then I discovered the tie in. When I took MeCbl, edema would start as I get methylfolate deficient. It is one of my earliest refeeding syndrome deficiency symptom. It can be brought on by NAC, glutathione (methyltrap) or folic acid, folinic acid (partial methylation block), and l-methylfolate (and/or MeCbl, and/or AdoCbl and/or L-carnitine and a few other things) as paradoxical folate deficiency which is healing in some compartments and deficient in other compartments."

    I didn't mean to imply that the MeCbl was causing it. I had that after some liver problems started 15 years earlier. after starting the MeCbl then each time my methylfolate deficiency increased so did the edema, when the methylfolate deficiency was corrected with more methylfolate, the edema went back down. I no longer need any diuretic, safer healing and maintaining the nutritional corrections.
     
  7. Iain123456

    Iain123456

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    Thanks for the info Fred, sorry for late reply!

    Potassium appears to be a considerable puzzle to my predicament. If I take high dose zinc, b6 or magnesium (amino acids and hair mineral indicates plyrouria deficiencies) I get negative mood symptoms and sometimes cramps which are only alleviated by potassium. I started TRT a few months back and sometimes after my injection I will suffer negative mood symptoms which again are only alleviated by potassium. I feel like I do not get any benefit from these things (which I am deficit in) because my intraceullar potassium is suboptimal. I have been taking at least 5g potassium chloride, 1g of mag glycinate and taurine and minimal b1-3 so I do not understand why it is not fixing itself. I have tried high dose metafolin, b12, lowering b6, zinc etc and I did not gain benefits. Any thoughts on the potassium situation?

    One of my considerations was whether K chloride was causing acidious which can affect intracelluar K levels, I will try K bicarbonate. Or whether I need some significant amount, 10g+, because I exercise several times per week?
     
  8. Freddd

    Freddd Senior Member

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    Hi Lain,

    You get low potassium from testosterone becasue it is causing tissue to be made which requires potassium. Potassium need as you are experiencing is a sign of success. Your situation is much like mine. I appear to have trouble getting potassium into serum from tissue so I have low serum levels. Part of my problem is that I have npo problem getting it into tissue. Serum half life is measured in several hours. I find if I basically drink potassium gluconate in water all day, 1600 mg worth typically and the rest (another 1600mg) with food. When I am having a problem I take a bedtime dose of 300-400mg and that gets me through the night.

    So as you increase the potassium until stable, keep it going. Don't stop and have to start all over again. All these things are titrated into place so that they balance.

    A little research would show that what you are suffering from is refeeding syndrome. Basically anything that causes cells to be made causes one to have a succession of deficiencies called refeeding syndrome. It isn't new. It was found when people died after starting to eat again after the starvation at concentration camps. The 10 years later, when they started giving B12 (CyCbl) injections again some people would have hypokalemia. They did not supplement and continue. Instead they were still very close to the refeeding syndrome from starvation that killed half the people doing it, after the low potassium hits on day 3 or 4.

    Every vitamin and mineral will be needed. I started everything but the MeCbl, AdoCbl, L-methylfolate and l-carnitine fumarate (one that works best for me and many others initially). Then I started this in order so as not to cause problems by not going in the order the metabolic process need. One has near immediate response to the nutrient most lacking that stop cell formation. You need to do things in a safer way. Not handling hypokalemia can cause death. Not recognizing copper deficiency like I didn't can cost you your teeth as it did me. You may find some helpful information at this link. After you read it I hope you understand what is happening.

    https://www.quora.com/Has-someone-u..._filter__=all&__nsrc__=1&__snid3__=1808215186
     
  9. Iain123456

    Iain123456

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    Thanks Fred.
     
  10. Freddd

    Freddd Senior Member

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    You are welcome.
     
  11. Iain123456

    Iain123456

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    One last question if I may Fred. I have also noticied high dose magnesium 1g causes low potassium symptons, Could this be a possibility? I appreciate correcting magnesium levels would cause cell creation but magnesium has been shown to increase serum potassium by itself in patients with hypomagnesia and hypokalaemia.
     
  12. Freddd

    Freddd Senior Member

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    The magnesium is essential in the right amount. Magnesium and potassium are 2 of your major electrolytes, and calcium and sodium. There is a balance that is needed. Any of the items in excess or shortage compared to the others can cause problems. A smaller dose of magnesium, of a well absorbed type that doesn't just give a person the runs and associated problems might be right. I have never really settled on an ideal magnesium level or ratio. So every now and then I try various levels and various types until I find one that agrees with me now. I suddenly had to change from one kind of carnitine to another, as I corrected some things it changed which form of carnitine I needed next.

    I was looking at my blood tests 6 months ago and saw low protein indicators after I had some success at correcting the low copper which increased healing and lowered my available protein for other healing. I increased my protein a bit and healing increased and so did need for potassium. It's an endless rebalancing. Each nutrient has it's effects that may affect other nutrients. When I was replacing 50 pounds of muscle I needed more potassium than I need now and more protein and more ... The body builders are driving cell building by usage. We need to do that too. Use the various parts of out body to encourage our body to repair it and then we find out what nutrients it might need.

    I'm playing "you bet your life". Each thing I heal gives less reason to die sooner. Then new damage from refeeding syndrome deficiencies increase the risk if I don't catch them soon enough, like the 5+ years of detecting copper problems. To see the micronutrient symptoms one has to get rid of the more basic gross items like methylation and ATP cycle of cell building instead of breakdown.
     
  13. Iain123456

    Iain123456

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    Food for thought. Much appreciated.
     

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