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3 yrs on - methylfolate and muscle wasting roadblock

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by wookielove, Nov 30, 2018.

  1. wookielove

    wookielove

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    After starting the methylation protocol about 3 years ago, I’ve made some significant progress and steps forward in health. I'm no longer bound to the house, but I am at another roadblock so I’m creating this post to get feedback as to how to overcome it.

    My specific problem with the protocol is certain things (EDIT: result in muscle wasting, teeth/gum wasting, and exhaustion. The effect is quick, beginning within minutes to a day when I really notice it. Now that I consider it further, it may initiate with scavenging of Nitros Oxide because of how quickly it happens). If think the first 3 are most relevant to my current situation in this list, but I'm including the other 3 for perspective:
    • Adenosylcobalamin causes a run down feeling, muscle and gum wasting, and my teeth get dry, yellow, and extremely sensitive. I have low bone density so this is a serious issue for me. Even with low doses I start to look like a meth addict. I tolerated this well in the first 2 weeks, since I have discontinued it due to the side effects.
    • Methylfolate (metafolin) caused a run down feeling, muscle wasting, anxiety and a dry, scratchy throat.
    • Carnitine in tiny doses feels like it overrevs my system then I get extended fatigue and muscle wasting.
    • ...
    • Trace Minerals Complex II causes a feeling that my liver is shutting down, takes days/weeks to get out of my system. Stop eating and get fatigued.
    • Trace Minerals No Muscle Cramps causes brainfog, anxiety, and it feels like I’m slow to process it in VERY small amounts: 2 mg magnesium, 10 mg chloride, 4 mg sodium, 5 mg potassium, 1 mg sulfate. I stop urinating as much as I should and get fatigued and stop eating.
    • Calcium: I am not producing enough stomach acid to absorb calcium to increase bone density, which I believe is part of the methylation problem I face. Small calcium doses cause extended constipation which stop me from eating.
    I did not continue taking TMG because it caused digestive issues. I did take plain glycine for a while with great results, then got a build up which caused fatigue and my brain to get slow. It’s something I’ll add back if I can get over this hump.

    I never got to try SAMe, which I’m considering trying again, but the mood warnings kind of freak me out because I get anxiety and I don’t like all of the extra ingredients in the NatureMade brand.

    On to what’s worked: after a long process of trial and error I got to a plateau with these daily supps about 6 months ago:
    • · 1200 mg Alpha GPC (choline)
    • · 1000-3000 mcg Hydroxycobalamin (metabolix brand liquid - yes it's good and I know I absorb it)
    • · 6000-8000 IU Vitamin D
    • · 500 mg Panthothenic Acid
    • · 17 mg Riboflavin 5 Phosphate
    • · 20 mg Benfotiamine
    • · 50 mg P5P
    • · 800 mcg Biotin
    • · 300 mg Magnesium
    • · 3-4 g Pharmaceutical grade through fish oil and caviar
    • · 2000 mg Vitamin C
    I compound my own B vitamins with a mix of active ones sourced from Thorne, Pure Encapsulations, and other high quality brands without fillers. Nothing that I take is cheap.

    With these supplements after I plateaued, I wasn’t getting worse, but I wasn’t getting better. 6 months ago I switched to the carnivore diet with regular fasting and time-restricted eating to quell joint stiffness issues, and it worked for the most part. However I noticed a general fatigue/depression starting in again recently. My annual physical showed low folate for the first time ever, so I decided to try introducing supplements again after the doc recommended methylfolate. I had put most of my methylation supplements on hold because I was only eating fatty meat and fatty fish, and B vitamins don’t absorb well with this. After about a week of going back on them, I tried methylfolate again.

    Here’s the problem. Methylfolate has the same damn effect as it did before. Anxiety, muscle wasting, teeth sensitivity. I cannot have this as my health is too close to the precipice. It’s the same feeling I get with acetyl l carnitine.

    My muscles get weak and tight and I get anxiety and I start to crave sugar/carbs, which help but they increase inflammation. It’s like ATP ramps up and then runs out of something and keeps ramping up, and if I feed it what my body craves my joints get stiffer.

    Any ideas on what I’m missing? My next thoughts are:
    • force myself to try calcium/strontium again with the magnesium, though this always left me exhausted, depressed and constipated
    • Switch methylfolate to Folinic Acid
    • Take higher doses (Freddd recommended levels) of potassium despite the anxiety/brain fog/detached feeling it causes (EDIT: potassium also causes stiffness in the skeletal muscles/joints. I haven't isolated it yet, but when I take potassium supplements it gets much harder for me to move).
    • Try SAMe despite the ingredient concerns
    • Try L-ornithine again despite it always causing cold sores
    I have to stick to the carnivore diet for now with a few apples thrown in for when I take supplements. Going off causes too many joint problems right now.

    I’m really confused on this one :-/
     
    Last edited: Dec 1, 2018
  2. Dechi

    Dechi Senior Member

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    I have no suggestion regarding supplements, as I’ve stopped them all, but about muscle wasting, do you do ME adapted exercises to maintain your muscle mass ?

    It really doesn’t take a lot. I’ve been doing about 45-60 seconds of exercise per day (not even everyday, just when I can) and I have kept a certain amount of muscle mass.

    Nothing compared to what I had before, but enough to be strong, although with no endurance.
     
  3. wookielove

    wookielove

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    @Dechi After I started the carnivore diet I was able to exercise again, after about 2 weeks, and I do band exercises and walk regularly, and ride bicycle seriously every couple of weeks. Since taking methylfolate, literally crumbs and dipping my finger in the dust of a crushed tablet, I don't believe it's possible because my joints are locked up again. I just walked a couple of blocks to the grocery store and I wouldn't do it again due to the pain, which is really different from how I was 2 weeks ago.

    So for over 5 months I was exercising and able to move. Now for 2 days I'm not able to again.
     
    Dechi likes this.
  4. Dechi

    Dechi Senior Member

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    @wookielove that is unfortunate. So sorry about that. I hope you find a solution, sorry I don’t have the knowledge to help. Hoping somebody will.
     
  5. Victronix

    Victronix Senior Member

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    California
    I could not tolerate methylfolate or folinic, and the high levels of potassium I was having to take were not sustainable over time, so eventually I stopped and now I just try to include high folate foods regularly (black eyed peas, asparagus, artichoke hearts, romaine, etc (https://nutritiondata.self.com/foods-000112000000000000000.html).

    However, one thing that happened to me when I stopped methylfolate was that my hormones tanked, and it was pretty awful, but I have one copy of APOE4, and I've heard that that can create problems with hormones with women in general.

    Assuming you don't want to stop folate, it sounds like the next step is to TRY folinic. It had an identical effect for me that methylfolate had.

    I have one banana a day to address the muscle issues with B12 and then add in a large can of coconut water if I get leg cramps (which happens during my period sometimes). Methyl folate really destabilized everything for me and was very intense so that I would get euphoria and then paranoid with low K+, etc.

    To me the sensitive teeth issue happens with low potassium - very bizarre. One time I was sure I had some kind of major tooth issue and was ready to go to see a dentist. Then after potassium - gone.
     
  6. wookielove

    wookielove

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    @Victronix I just got some folinic acid to try, but I'm waiting for my symptoms to even out a bit so I can judge the reaction better.

    The sensitive teeth issue is very weird, I agree. Good to know potassium helped you, I'll keep it around and try in low doses. I suspect it has something to do with collagen also, which I can't take due to my specific autoimmune issue. I also bought some Natural Vitality Natural Mag + Calcium, which has a bit of potassium also. Previously when I took even a little calcium it would just block my system up so there gets to be a multi-day delay in excreting. There's a much higher dose of magnesium here, so hopefully it works for me. I'm going to start with very small doses this time.

    Unfortunately on the carnivore diet I can't eat any of the other foods you mentioned, I'm really just stuck with beef, particularly ribeye and some ribs.

    I figured I'd also mention as some people probably won't visit my other thread, MethylB12 gives me debilitating headaches, and my SNPs direct me to take hydroxycobalamin instead, which is why I'm not on MB12.

    I'm reading through the guides again and one thing mentioned is digestive issues due to poor methylation. I tried to work on digestion first (4R Gut Rebuilding Program) but got nowhere. This makes more sense to me now:

    https://howirecovered.com/active-b12-therapy-faq/

    Should I fix my digestive issues before starting methylation?

    For example, the development of a partial methylation cycle block may be what leads to the gut dysfunction in many cases. However, when the gut dysfunction has developed, it can lead to poor digestion and absorption of substances that are important to get the methylation cycle running again, such as amino acids. So even though the methylation cycle block may have led to the gut dysfunction, it may be necessary in some cases to work on the gut first. In other cases, the gut may still be working well enough to bring in enough of the essential nutrients, and in those cases, of which yours might be two, fixing the methylation first works well.

    Yesterday I had a conversation with Dr. Richard Kunin, the president of the Orthomolecular Health-Medicine Society, a person who has studied methylation issues for many years. He pointed out to me that when methylation goes down, one of the first things to suffer is the exocrine pancreas function, i.e. the part of the pancreas that normally produces digestive enzymes. I did a little literature searching, and he appears to be right. That might be one way (or maybe it’s THE way) that a partial methylation cycle block leads to gut dysfunction.

    When you can’t digest food for lack of digestive enzymes, I think the bacteria are going to respond by consuming the food and overgrowing. This may account for low chymotrypsin or pancreatic elastase in some of the stool tests from PWCs that I’ve seen. In the past, I’ve suspected that this might be due to low stomach acid production, which would lead to lack of a signal to excrete the digestive enzymes from the pancreas when the food moves into the duodenum. But maybe the problem really is with the pancreas itself, because of the methylation cycle block. velha: My gut shut down at the same time I became very ill – July/August 09. Digestion just stopped. So, mine has been short term also.

    It is hard to say what has helped my gut the most. I can say the I noticed no effect with increasing doses of mB12 and methylfolate (at least not immediate). My gut began to improve in late December. I did a number of things at that time, two being increasing my adB12 (to daily) and carnitine dosages (~4g/day). Suzy: I just wanted to share another possible reason for improvement of gut function on Rich’s or Freddd’s protocol. This abstract shows that oxidative stress can lead to pancreatitis and Rich’s protocol has been shown to raise glutathione in his study.

    Superoxide dismutase and catalase: a possible role in established pancreatitis.
    Guice KS, Miller DE, Oldham KT, Townsend CM Jr, Thompson JC.

    The mechanism of cerulein-induced acute pancreatitis may involve the production of free radicals in excess of the capacity of endogenous intracellular scavengers. These radicals destroy the cellular membranes, releasing digestive enzymes and cellular proteins into the interstitium. Thereafter, a cascade of events, including polymorphonuclear infiltration and complement activation, leads to pancreatic destruction.

    The present study demonstrates that superoxide dismutase and catalase reduce the ultrastructural and biochemical injury associated with cerulein-induced acute pancreatitis in rats. Pretreatment with superoxide dismutase and catalase 30 minutes before injury did not appear to be protective, presumably because the half-life of intravenous superoxide dismutase is only 6 minutes. This and similar studies suggest a potential clinical role for free radical scavengers in acute established pancreatitis.

     

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