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High Dosage methylfolate users

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by zzz0r, Apr 30, 2014.

  1. acrosstheveil

    acrosstheveil Senior Member

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    i took 1000mg of elemental potassium. I think i feel a tiny bit beter. I know what donut hole and paradoxical deficiency is, but I raised my dosage in order to avoid that. I doubt that is what's happening when I'm taking over 15mg a day.
     
  2. Gingergrrl

    Gingergrrl Community Support Volunteer

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    I did not get to read this whole thread but wanted to add my info on this issue. I will be starting Methyl B-12 shots next week (when they arrive from the compounding pharmacy) prescribed by my CFS doctor. They will be 3x/wk for the first month and then we re-evaluate and I probably switch to the sublingual. They are 10 mg but he said I can start with 5 mg.

    As far as methylfolate, he initially suggested 15 mg (which I felt was too high for me b/c I am very sensitive to meds and have never taken this before) so he said to do 5 mg instead. However, the website he suggested was out of this dosage so we ordered the 2.5 mg instead (which should arrive next week.)

    So, long story short, I will be starting with 5 mg of Methyl b-12 shot and 2.5 mg methyl folate pill. If anyone has any thoughts on this, I would love to hear feedback as this is still all brand new to me!
     
  3. Freddd

    Freddd Senior Member

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    Hi Acrosstheveil,

    This sounds to me like an induced deficiency. It might be AdoCbl and/or LCF Methylation puts a heavy demand on these. I remember noting at the time that I felt very tired and lethargic similar to how I felt after beating off a pneumonia with 104 fever; "convalescent" I called it at the time. That was before I knew a thing about induced deficiencies. Below are the folate and potassium common induced symptoms.

    Death from B12 deficiency has been variously described as terminally fatigued or paralysis. Low potassium can also make muscle contractions near impossible. When the mitochondria goes off Krebs cycle and does anaerobic metabolism generating 1/6 the enrgy and lactiovc acid which makes for burning muscles. I had that for 17 years from a few days after I crashed until I took enough MeCbl (converts to AdoCbl to a degree). Good luck.






    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.
     
  4. Freddd

    Freddd Senior Member

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    HJi Gingergrrl,

    The every other day MeCbl might very well do elevator up and down or worse, roller coaster. I might suggest 2.5mg twice a day SUBCUTANEOUSLY. I would bet that it would be more effective than 10mg every other day. That will lower the sudden penetration of a 10mg injection (especially IM) and make for a steadier effect because the sc injection, while it is front end loaded, does last 12-24 hours or more and so steadiness can take a day or 3 to reach. Also, the methylfolate works better with at least 3 doses a day. The changes in MeCbl will generally have no effect on the folate.
     
  5. acrosstheveil

    acrosstheveil Senior Member

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    i think it may be hypokalemia freddd. I've been taking 30mg of methylB12 and 10mg of adB12 (sublingual) with the 16mg of methylfolate. I took 1000 mg of elemental potassium today and feel better, not great though. I think I may need more potassium. Will my need for potassium go down with time or will I need a steady intake of potassium as long as I am on the high dose methylfolate? I may need to just reduce the methylfolate dosage a bit for now. Maybe 8 mg/day. I can't afford any more supplements until next month.
     
  6. Freddd

    Freddd Senior Member

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    Bismuth is a rare poison when used as Pepto is used. It generally takes an acid with it to cause it to be absorbed. I have no idea at all if it can be absorbed from the oxychloride form.
     
  7. Freddd

    Freddd Senior Member

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    That may be a clue then. I generally find I need to divide my daily potassium dose into 4 doses with one dose at bedtime or middle of the night so as to not wake up in trouble. Reducing the folate won't likely affect the potassium need to any significant effect
     
    aturtles likes this.
  8. acrosstheveil

    acrosstheveil Senior Member

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    can a symptom of low potassium be dizziness and/or nausea?
     
  9. sueami

    sueami Senior Member

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    Nausea is in Freddd's list of hypokalemia symptoms. Mine seem to tend towards the heart arrhythmias and anxiety.

    To repeat the advice given by my physician regarding potassium supplementation, in case it is useful to you. He prescribed one 1500mg potassium chloride tablet a day and recommended a canadian pharmacy from which to purchase it.

    Despite his advice I became afraid of taking that much after reading cautions here about pills getting lodged in the digestive tract and damaging the mucosal lining, so I tried cutting it up into thirds, then taking no-salt dissolved in water and 99mg potassium gluconate pills instead.

    When I returned for a follow-up and told him my concerns, he very kindly told me that he gives his 80-something father one pill a day without problems and his digestive processes had to be slower than mine. He said that he himself has taken up to four tablets at a time when he experienced a deficiency and encouraged me to continue taking one pill a day, two if the symptoms don't subside. "Potassium is your friend" he said.

    I say this in case you might be needing more than 1000mg but are afraid to supplement that high.
     
    Victronix and aturtles like this.
  10. zzz0r

    zzz0r Senior Member

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    @acrosstheveil you have weak or exhausted adrenal glands. Commonly described as adrenal fatigue. The panic attacks can be because mfolate pushes down the gas in the conversion of norepinephrine to epinephrine and because your adrenals are too weak to produce more cortisol instead. So epinephrine acts as a back up hormone instead of cortisol. Epinephrine also known as adrenaline will cause panic attacks while you are resting or sleeping and it can also cause muscle tension and maybe muscle pain as well.
     
    Last edited: Aug 3, 2014
  11. acrosstheveil

    acrosstheveil Senior Member

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    I have been trying to combat my adrenal fatigue for years and i take adrenal glandulars, pantethine, pregenenolone, pantothenic acid, adaptogens, and vitamin c. Is there anything stronger for raising cortisol levels? I seem to always be exhausted.
     
  12. whodathunkit

    whodathunkit Senior Member

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    @acrosstheveil: do you salt load? Adding salt to my diet (putting it in my drinking water, heavily salting my food, etc.) did wonders for my adrenals. Potassium may not be the best thing for people with adrenal problems if salt is not added to balance it. We have potassium problems, anyway.
     
  13. TStrom

    TStrom

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    Hi everyone,
    I've been reading posts on this site off and on for about a year and seeing a doctor in Texas. I was trying to learn and get better without bothering anyone without a post but do not seem to be getting anywhere. I would like your opinions of the 2 supplements that a doctor has had me on for the last year and the IV I'm being offered now. He says according to his specialized testing my inflammation has gotten better but I really don't feel much better (still tired, feel like I drag myself around, food issues, histamine issues, colder than everyone despite being on thyroid meds and more). Now he is offering me an IV of Glutathione and other stuff he's added to it.

    Cream 1 pump in the Morning, 1 pump in the evening - no dosage or mg or mcg listed on bottle, not sure how that is legal: 5-MTHF, hdroxycob, methylcob, pyridoxal-5-phosphate, and vitamin D3

    Capsule 1 twice a day:
    Vitamin B-2(as riboflavin-5-Phosphate) 30mg
    Vitamin B-3(as Niacinamide) 125 mg
    Folinic Acid 2 mg
    Calcium L-Methyltetrahydrofolate 5mg

    (I'm worried that it's to much folinic acid and that the niacinamide is canceling out the MTHF in the capsule)

    Thank you all in advance for taking your time to give me your opinion and advice. I truly appreciate it.
     
  14. zzz0r

    zzz0r Senior Member

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    @TStrom Folinic acid could cause a problem if you have a mutation on the MTHFS snp homozygous or heterozygous(which I just saw that you do). IF you do not I do not think that could cause a problem but either way you can ask him to reduce the dosage of folinic acid.

    Do you appear to have overmethylation symptoms when supplementing with methyldonors such as the mfolate that you are already taking and methylcobalamin, carnitine or maybe coffee? (an overmethylation symptom for many cases could me anxiety and overstimulation). If you do not you maybe able to reduce the B3 dose
     
  15. TStrom

    TStrom

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    zzz0r Thanks for your post. You said exactly what I was concerned about. I do not get over methylation symptoms on those capsules. The only thing I noticed now is on the rare occasion I drink an Ice tea needs to before 2 PM or I will have insomnia. I do not drink coffee (can't stand the taste). Before I went to this doctor I did try some supplements separately but I do not remember how that went specifically.

    I can't help but wonder if folinic acid is competing with the Methlyfolate for uptake and then if the Niacinamide is neutralizing the methyl donors I think I was trying to create. I AM UNDER THE IMPRESSION THE GOAL IS TO CREATE THE CORRECT NUMBER OF METHYL DONORS. The only thing that improved over this last year was my low to low normal White blood cell count and platelet count that I have had for the last 6 years. It seem like the ingredients in that capsule compete with one another and neutralize it's self to some degree. Is that what you are thinking?
     
  16. whodathunkit

    whodathunkit Senior Member

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    Update for anyone interested: I have been able to reduce my methylfolate intake down to about 8mg/day. I think this is in part due to the fact that I added MSM to my regimen and the MSM is helping with the epithelial/gut deficiency symptoms that too little methylfolate seemed to precipitate with me. I couldn't reduce methylfolate down to less than16mg/day before MSM.

    Worth noting is that MSM came with its own special set of problems before I acclimated to it. Like initially starting methylfolate/Deadlock Quartet, it made me very sick within a short time of taking starting it. It's taken almost three months to get entirely through the side effects, but now I believe it is a very, very valuable adjunct for me. Another foundation of health, if you will.

    Also worth noting is that I got the same advice about MSM from another person that Freddd recommends for methylfolate: when I got sick it was recommended to radically increase, up to 24mg/day. I did, and came out on the other side of the acute phase feeling better than before, in a fairly short amount of time. Lilke with methylfolate/Deadlock Quartet, I still had some tweaking to do, to get completely clear of the side effects, but once I radically increased, the really bad sides rapidly got worse and then more rapidly improved.

    Interesting phenomenon all the way around.
     
    zzz0r and ahmo like this.
  17. Kim C

    Kim C

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    @zzz0r, yup, I ditto this. My cortisol is now back up into normal range but when naturally lower at night my body is cranking out adrenaline to counter the inflammation in my sore gut. It comes with mild insomnia (usually can get back to sleep after about an hour) but when I do sleep I wake about every two hours likes clockwork with each surge and hot flash to go with it (ugh!) I have a probable ulcer which seems to be healing. I have had severe muscle tension for YEARS which is primarily on the right side. I get a side stitch too. All this is better tho since getting on methylation support. My cortisol came back up fairly quickly by adding more animal protein to my diet but I think my adrenals are still healing, and certainly they are still getting beat up until my body completely heals. I'm getting there!
     
  18. Kim C

    Kim C

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    @acrosstheveil, I mentioned in another reply that my adrenals have responded to more animal protein in my diet. I was not able to do salt, as it was extremely irritating to my gastritis and probable ulcer. I never craved salt but do like the taste of it in the meat juices, however even those juices will irritate my stomach if I am not careful.

    Currently I am having good luck with Vital Whey protein, although I know Freddd and others are not too keen on certain glutathione precursors such as these. Interestingly NAC was a disaster for me, as I believe it was stripping what little mucous membrane I had in my gut, but this particular whey is very soothing and I needed the extra lysine as I have herpes simplex 1 and was breaking out in fever blisters and mouth sores inside my mouth pretty frequently until I added it. I could not tolerate lysine supps. I also do a rice protein powder with it and a green banana, usually twice a day and sometimes three times.

    Funny thing is.... I tested as having pretty strong food sensitivity to both banana and whey, but when I got stuck in my healing I decided to add them in (it had been over a year since I eliminated these from my diet). I have been using Immune Tree colostrum since last November, and although I did have a day or two of diarrhea when I started it, it quickly passed and I believe has been an overall help to me also.

    Anyway, as @zzz0r mentioned, the adrenaline surges (I still have these, aka hot flashes) can really leave me feeling exhausted. Most days tho I have a lot of energy and can go most of the day. I have a small farm with two horses which requires a lot of care, and I am able to do an hour of yoga twice weekly, plus Pilates, and step aerobics each once a week along with regular housekeeping, etc. This is a LONG way from where I was. I was barely able to function about year ago. I still have a long way to go, but I have made huge strides even since adding full methylation support in April this year. So keep the faith and don't give up!

    I have to keep telling myself that you don't fix 57 years of lousy methylation in 5 months...I am compound hetero like you. But some days I do get frustrated. Still, I see myself getting a tiny bit better most days. Kim C :)
     
    sueami likes this.
  19. Kim C

    Kim C

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    @whodathunkit, my doc suggested MSM for me too, and I take 2 grams a day.

    Also, interestingly, I have never seemed to need more than about 5 mg of methylfolate but have been taking the MSM since I got on full methylation support last April. Not sure if I had specific symptoms from MSM, as I had so many awful symptoms during start up but I was lucky as the worst was over in about 2-3 weeks. I also think the MSM is of benefit to me. :)
     
  20. ldf

    ldf

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    @Freddd

    I started methylation treatment approximately 4 months ago and am seeing improvements :) Thanks everyone for sharing your experiences! I had to start low and slow due to extreme sensitivity to all supps. Initially started with MeCbl but could not tolerate the insomnia, dizziness, severe facial pain, etc --even at minuscule doses.
    So in desperation to keep going I switched to inferior HyCbl in hopes that I could eventually move back to MeCbl as my body began the healing process.

    I have been titrating up the HyCbl but it has been slow going--up to 3 mg HyCbl/day with 500 mcg AdCbl.
    Over the past several weeks I have also been able to add in approx 50 -100 mcg MeCbl daily.

    I have had lots more success with titrating the folate--now up to 8.2 mg/daily.

    Additionally I take a B complex (with low B's) and up to 2000-3000 potassium daily (due to hypokalemia symptoms).
    Also take minuscule dosage of TMG (read somewhere it would help conversion of HyCbl??)

    I haven't added started LCF yet--but hope to soon.

    So my concern is with the possibility of creating methyltrapping due to my high dose folate and it being out of ratio balance with the inferior HyCbl. Am confused with what my next steps should be and was hoping for some guidance. Should I decrease the folate... or just keep going with the B12 titration? I fear PFD returning if I decrease the folate. Any suggestions? Thanks in advance!
     
    Last edited: Sep 4, 2014

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