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Question re: Methyl B-12 shots and 5-MTHF

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

  1. Gingergrrl

    Gingergrrl Community Support Volunteer

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    This question is for all the methylation experts out there and I am flagging the people that my foggy brain can remember @Freddd @Valentijn @caledonia.

    I just found out I have both MTHFR mutations (I think it is called compound heterozygous) and I will be starting on Methyl B-12 shots 3x/wk and 5-MTHF supplements. Both just ordered and I should have them next week.

    My question is this, I read somewhere on PR that there are certain supplement(s) that PWC's have taken that increased their success at tolerating the methylation supplements. I did a site search but couldn't remember or find what I was looking for.

    Can someone remind me, is it potassium or niacin or something else that many have taken along with the methylation supplements? I appreciate any advice and as always, thank you guys in advance.
     
  2. Freddd

    Freddd Senior Member

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    Hi Gingergrrl,

    Often on around the third day after methylation starts, which normally causes a brightening of the senses as a result of dimming being a result of deficiency, people have sudden increases of some symptoms that usually come down to low serum potassium and/or a donut hole paradoxical folate deficiency (partial methylation block by triage level) and can be corrected. It is important to do so with the potassium as that can cause dangerous and even fatal consequences. And healing increases as the folate deficiency symptoms are decreased.

    The sensory brightening, increased need for methylfolate and increased need for potassium are all flags of cell formation and healing. Follow the clues towards healing. They will likely seem counter intuitive. Neurological healing can be unpleasant at some stages and a lot of work. Everything can hurt more and differently. That also provide clues to healing when you can see all your separate pains and so on.

    After you get things balanced out after that initial balancing period adding AdoCbl sublingually and L-carnitine fumarate, you will take care of the entire Deadlock Quartet and maybe be able to get all levels healing.


    Here are many of the typical induced deficiency at startup, and continuing with some fluctuations.

    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.
     
  3. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Freddd I am probably the least scientific person on the board so please forgive me for not understanding all of the info! It sounds like you are saying that for some people, when they start the methylation shots/supplements, they can get hypokalemia (low potassium) and need to supplement.

    I am already supplementing with potassium b/c I am taking Florinef which can deplete potassium. Thus far, my potassium labs are totally normal. In your opinion, if I don't get any of those symptoms that you mentioned and keep taking the potassium, does it sound like I will be doing the right thing? I will be starting the methyl-B injections and 5-MTHF at lower dose and building up slowly.

    Also, I thought I had read posts about people supplementing with Niacin when they did methylation but now I am thinking I am wrong? Can you let me know?
     
  4. Freddd

    Freddd Senior Member

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    Hi Gingergrrl,

    We have a set of testsd from somebody who ended up in the ER. She insisted they take the potassium tests several times. In a couple of hours her potassium went from about 4.5 to under 3.5. Based on the pattern it appears as though the people with CFS/FMS/ME have a slower than average potassium replenishment from tissue into serum. A typical potassium increase is 2000mg/day or more, often. As far as Niacin (B3) goes, up to about 100mg per day with the active b12s is helpful. More than that and it increases the need for Metafolin to possibly insatiable levels to get rid of the deficiency symptoms. MeCbl appears to make all the other vitamins more effective. I suggest you have it by your bed with a bottle of water. If your first clue is immobilizing spasms in the middle of the night, you might want it available within reach. It happens suddenly. You wouldn't catch it even testing every day. How much potassium are you taking daily?

    Methylation turns on by layers, entire layers. So when it turns on it is sudden. I don't know of any way to feather it until one gets to the LCF part. That is the only one that is easily dose proportionate. Taking tiny doses tends to prolong the most unpleasant parts and keep potential neurological damage increasing for longer. I had increasing neurological damage for the first 5 years because I wasn't taking enough MeCbl. I would have done it differently had I known at the time. Good luck.
     
  5. taniaaust1

    taniaaust1

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    In future you may want to consider High potency (5000mcg) Methylcobalamin B12 by Natural Factors (they break down to quarters easily with fingers, if you want to take less) instead of having to buy B12 ampules (which I know are quite expensive, I used to inject my B12 but now take these). These chewable tablets dissolve very quickly under the tongue. As far as Im aware, that is as efficient as injecting it.

    My specialist put me on these for my MTHFR C677T mutation.
     
  6. PeterPositive

    PeterPositive Senior Member

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    Two quick notes about that:
    1) That particular product contains lactose, I was going to give it a try but had to stop because lactose isn't good for me. Just saying in case other people have the same problem.

    2) High dose + fast dissolve should be a bit of a red flag as they may not get absorbed very effectively. It depends also on the quality of the product itself. Not all Methyl-B12 are created equally, so experimenting is required. I have had a similar experience with Solgar's Methyl-B12, which is a good brand but their "nuggets" (as they call them) dissolve in less than a minute and aren't so effective as other brands.

    cheers
     
    taniaaust1 and ahmo like this.
  7. caledonia

    caledonia

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    Have the nicotinic form of niacin on hand before starting, in case you get into an overmethylation situation. The niacin will slow down methylation and rapidly stop any uncomfortable symptoms. If you don't, methylation can keep cranking for days, weeks or even months.

    Have potassium on hand before starting for when potassium deficiency kicks in.

    Please read "Start Low and Go Slow" and "Roadblocks to Successful Methylation Treatment" for more details on these two supps and other important info - they're linked in my signature.
     
    Valentijn, taniaaust1 and Gingergrrl like this.
  8. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @caledonia Thank you so much and I could not remember which profile had all that info so thank you for reminding me. I printed out and read the "Start low and go slow" as well as the "Roadblocks to successful methylation" and am so impressed with all your hard work putting those together!

    Can you clarify, what exactly are the symptoms of "Overmethylation" to look out for in case this happens to me? I already take a potassium supplement b/c of Florinef and have electrolyte tablets, Nuun, etc. But I am not familiar at all with "Nicotinic form of niacin?" Can you explain in (dumbed down language LOL) when someone would need to take that and where do you get it?

    My Methyl B-12 shots & 5-MTHF are now ordered and I will be starting them some time next week so I want to make sure I have everything I need in case something doesn't go as planned!
     
  9. taniaaust1

    taniaaust1

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    Thanks. that was interesting. I hadnt even noticed it had lactose in it!! oh

    It was a CFS specialist who also specialises in MTHFR mutation which put me onto this one, he was very particular about the brand he recommended as he had found with his patients that they dont all work equally (so I have to assume from his comment when he told me of this one, that this one did do a lot better then some of the other brands of this out there). So it was interesting that you said that the faster disolving brands dont work as well.

    It has worked better for me then my previous twice per week hydroxyl B12 injections (which only helped my brain some but did nothing else).
     
  10. PeterPositive

    PeterPositive Senior Member

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    It seems that the longer it takes to dissolve, the longer it stays in contact with the mouth's mucosa, hence the improved absorption. It makes sense to me, although I am not sure there's experimental evidence for this idea :)

    If you feel better it's good sign. Hydroxy-B12 must be activated in the body and some people, myself included, don't find it very efficacious.

    I tried to switch to Hydroxy-B12 for a couple of weeks and my energy levels went down pretty quickly. Started feelin' drowsy and groggy after 3-4 days. When I reintroduced Methyl-B12 and Adenosyl-B12 I felt much more energy and focus.
     
  11. taniaaust1

    taniaaust1

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    Yeah its amazing how fast those Bs can wear off.
     
  12. Freddd

    Freddd Senior Member

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    It seems that the longer it takes to dissolve, the longer it stays in contact with the mouth's mucosa, hence the improved absorption. It makes sense to me, although I am not sure there's experimental evidence for this idea :)

    I ran thousands of sublingual comparisons to injections via a combination of urine colorimetry and effectiveness, and in all more than 20 different brands over time. None of the fast dissolving brands made it easy to get to visible cobalamin levels which were achieved with a 10mg injection with adequate methylfolate. Before Jarrow became ineffective, it was easy to get 10mg of absorbed MeCbl, in combo with Enzy. There isn't any brand that has done the required testing to be able to specify sublingual use according to the FDA. That is for qualified drugs.

    Perhaps it is possible to enhance mucosal absorption by careful; pH control or something. I haven't run into it that I know of.
     
  13. Kati

    Kati Patient in training

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    @Gingergrrl43 in my opinion it is best to contact the clinic should your condititon change or you have troublesome symptoms. Since they know your current situation and new drugs that you have or are starting soon, they will be in the best position to suggest testing/changes in treatment or else.

    My personal experience from MB-12 and M-folate has been unremarkable. No effect whatsoever so far. No change.
     
  14. caledonia

    caledonia

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    Overmethylation symptoms - for me, it was feeling wired and overstimulated. This was from lecithin, which would be the secondary methylation pathway. I don't know if that makes a difference, or if different people have different symptoms.

    This is what I've used for nicotinic acid/niacin - http://www.iherb.com/Now-Foods-Niacin-Sustained-Release-500-mg-250-Tablets/693

    Vitamins all have different forms. Some forms might absorb better than others, or have different uses than others. So for example, magnesium can be magnesium oxide, magnesium citrate, magnesium taurate, etc.

    Quoted from: https://umm.edu/health/medical/altmed/supplement/vitamin-b3-niacin
     

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