The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
Discuss the article on the Forums.

Methyl trap, carnitine deficiency, missing cofactor, huge folate deficiency, or just screwed up?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by junkcrap50, Apr 4, 2016.

  1. junkcrap50

    junkcrap50 Senior Member

    Messages:
    140
    Likes:
    163
    I’m stumped. I tried to figure this out on my own by researching the forum and by trial-and-error’ing new things, but I humbly ask for some experts’ help. I can’t seem to get a handle on correcting some of the doses and symptoms on the Freddd Protocol.

    I started the Freddd Protocol 2 months ago, and while I haven’t had the wild success or brightening as many people have, I did have some mood improvement, mild energy improvement, and induced potassium deficiencies (indicating new cell growth and working methylation).

    I’ll admit. I didn’t go about doing the protocol the best way. I probably started too fast, too high of methylfolate doses, and didn’t wait for mild deficiency symptoms to appear. I conflated and combined startup symptoms with folate deficiencies while also increasing doses to chase a big improvement/brightening. Now, I just want to undo as much as I can to get rid of some stubborn symptoms and restart to go again at more appropriate levels. I don’t think I can just increase folate since high doses haven’t helped.

    Main complaint currently: Very sore, achy, and tight muscles – painful even. Occurs mainly in arms, calves, and legs; and easy muscle burning (lactic acid feeling) from walking up stairs, changing lightbulb, scratching back, etc.

    Common concurring symptoms with muscle soreness
    : warm feeling in chest/abdomen, heart palpitations, tight muscles – mainly neck and Achilles

    These symptoms have been constant throughout doing the Freddd Protocol. This does not go away with potassium supplementation or with any increase in methylfolate (Extrafolate-S), even high doses. However, I think the soreness was greatly improved early on after a 1 time dose of 10mg of methylfolate (Metafolin).

    Other symptoms during Freddd Protocol: Joint pain in fingers, dry eyes, static shocks, flushing in face, malaise, irritability, runny nose, sore throat, dandruff, mouth sores, tongue and gum inflammation/discomfort, gas and bloating, foul smelling gas and stool

    Important Observations:
    --Have had induced potassium deficiency symptoms: headache, unbearable fatigue, malaise, very slight muscle cramping
    --First felt benefits taking 250mg LCF with noticeable mood improvement and mild energy improvement. Benefits faded after 3-4 days. No change when increasing to 500mg LCF.
    --Tried switching 500mg ALCar and had a huge jump in energy and mood for half a day. Definitely need ALCar over LCF. Slept like a rock during nap and that night. By the end of day, had intense migraine, terrible malaise, fatigue, worsened muscle aches and knots, tightness in calves, joint pain. Potassium and methylfolate had no improvement.
    --Tried 500mg ALCar again day after 1st time trying ALCar and only had negative symptoms. No benefits.
    --Tried liquid dosages of ALCar starting at 5mg and titrating. No benefits or negative symptoms. Only got headaches when titrating too quickly.
    --Taking 1000mg Niacin did not alleviate any symptoms, at anytime.

    Other Notes:
    --Been limited in eating vegetables to try and avoid folate.
    --Tried taking sublingual B2 FMN for several weeks to try and help decrease large folate needs. Noticed nothing from it. Frequently found myself urinating it out (neon yellow pee) despite breaking it up in smaller doses throughout the day.
    --Neon yellow urine taking B-Complex 2x/day, but not 1x/day.

    Critical Co-Factor Supplementation (Started for 4 weeks before FP):
    1 B-Complex (Jigsaw)
    250mcg Molybdenum
    10,000 IU Vit. A
    375mg Vit. E
    20,000 IU Vit. D
    1,000mg Vit. C
    50mg Zinc
    500mg Magnesium
    Multivitamin (pure encapsulations)
    1g DHA
    500mg Primrose Oil
    53mg Lithium
    25mg DHEA
    200 mcg Selenium 2x/week
    16.7mg Manganese 2x/week
    3mg Boron – 2x/week
    39mg Phosphatidylcholine
    750mg TMG
    2g Ribose
    5g Creatine


    Deadlock Quartet Dosages:
    --Started at: 1mg mb12, 1mg folate, 300mcg ab12
    --Peaked at: 4mg mb12, 50-70mg folate, 2.5mg ab12, 500mg LCF/ALCar
    --Tried taking a break from everything for a week after switching from 500mg LCF to 500mg ALCar. Felt better with headache and malaise going away and muscle aches lessening. After the large dose of ALCar, tried to take more syngergistically equal levels of the DQ.
    --Finished: 1mg mb12, 4mg folate, 1mg ab12, 5-20mg ALCar (titrated up by drops).
    --With trying my idea of synergistically more equal levels of the DQ, my muscle aches came back right away with heart palpitations, warm feeling in chest. I have been doing this for about 2 weeks and have stopped everything the past several days while I wrote this question up.

    My Theories:
    1. Large Folate Deficiency - With my large DQ doses, I started too much healing and never squashed my low folate levels. I hope that switching to Extrafolate-S form of methylfolate from Metafolin was the reason high doses of folate did not help, even while trying it sublingually. Maybe if I took 40mg+ of Metafolin, my folate deficiency levels will go away. I think a large folate deficiency is the most likely case as I read a quote from Freddd that “even 100 mcg of absorbed mb12 can require 30mg of folate to prevent folate deficiency symptoms.” Taking B12 seems to cause my muscle aches and tightness to worsen.
    2. Missing co-factor – My muscles ached even while other milder symptoms of folate deficiencies came and go, such as canker sores, runny nose, etc.
    3. Methyl Trap – I am MTR/MTRR homozygous and maybe that muscle soreness symptoms of folate deficiency is due to too low of b12 rather than folate.
    4. Carnitine Deficiency – Deficiency in carnitine can cause muscle aches. I seemed to consume the ALCar very quickly and subsequent doses of ALCar caused intense headaches and malaise. I read that the DQ we are most sensitive to indicates it is the DQ we are most deficient in. Also, titrating by drops did not cause any improvements, indicated needing more before any seeing any benefit. Titrating ALCar did not cause any anxiety or other emotional symptoms.

    What I’m going to do in the meantime is buy every form of methylfolate (Metafolin, Quatrefolic, Extrafolate-S, Magnafolate-C, and Deplin) and try taking large doses of it (40mg+) when a minimal dose of mb12 and ab12 to help get it into the cells, each brand for a couple days. I may try again using folate sublingually and maybe (though, dangerous) intranasally.

    Questions:
    --What would be a b12 dose appropriate that help carry folate into cells and solve folate deficiency while not starting new healing?
    --How do you know which B-vitamins (B1,2,3,6) to adjust and how?
    --Has anyone found other forms of folate (Quatrefolic, Extrafolate-S, Magnafolate-C, etc) to not work at all compared to Metafolin?

    I am very grateful to anyone who reads this and who can help. I can attach an excel sheet of my dosage and symptom diary on the Freddd Protocol if that helps. Thank you.
     
  2. ahmo

    ahmo Senior Member

    Messages:
    4,353
    Likes:
    6,560
    Northcoast NSW, Australia
    @junkcrap50 I've looked at this again, and am sorry to say my brain isn't in good enough shape to try to sort things out for you. not that I'd know the answers. @gondwanland has had pretty good results in tracking and eliminating muscle and neck stiffness.

    Here's Ben Lynch re types of folate:
    http://mthfr.net/l-methylfolate-methylfolate-5-mthf/2012/04/05/ What’s the Difference? Types
     
  3. junkcrap50

    junkcrap50 Senior Member

    Messages:
    140
    Likes:
    163
    No problem, Ahmo. Thank you very much for reading and taking a look. I’ve seen Lynch’s types of methylfolate and read on here others experiences on the different brands of effectiveness. I’m using the right kinds. Since my last posting, I tried some new things.

    To solve methyl trap, I took 10mg mb12 in one day (5mg doses right after another). More than I’ve ever taken. It didn’t help one bit. So, I think that would rule out methyl trap from having folate>B12.

    To solve missing co-factor. I added calcium to my co-factors and tried eating high phosphorus foods. Neither seemed to do anything. I still need to try upping my Vitamin C and try to consistently take my potassium.

    I solved my muscle pains and aches by taking an insane amount of folate. I took a total of 53.4mg (!) of methylfolate sublingually (!) (with 500mcg of mb12 to get it into the cells). But due to the method of absorption, the total amount would be much, much higher than if taken just orally. My symptoms were greatly diminished in 1 day and gone after 2 days. I took the following:

    400mcg intranasally
    3mg sublingually
    10mg instranasally (very carefully and slowly)
    + 40mg sublingually (4x10mg doses spread in one sitting over 2 hours)
    = 53.4mg

    Sublingually, I would just dump 10mg Extrafolate-S capsules in my lower gum. Taking 50mg folate sublingually for roughly a week has kept my muscle pains, tightness, and aching at bay for the most part. (I still get muscle burning easily and hints of muscle tightness. Hard to pinpoint though.) This hasn’t made me feel awesome, just back to my normal pre-FP side-effects self. I’m no longer take any mb12 or folate right now for the most part.

    It seems my symptoms to have been a severe folate deficiency.

    Now, I have no idea why I needed so much. Maybe @Freddd , @Gondwanaland , or someone else can answer that. I have a few ideas. I read in a couple places that 28mg roughly is the maximum effective dosages for people (who knows if that's actually true) if they don't have folic acid/vegetable folate sensitivities.


    Ideas Why I Needed Such a High Methylfolate Dose
    :
    1) Actos-Metformin: I am taking Actos-Metformin that is said to be able to cause folate deficiency. Both are listed in a list of folate-interferring drugs, but there's nothing definitive out there. Metformin can cause b12 deficiency I know. However, folate and b12 defiencies from Metformin has been shown as easily remedied by 400-800mcg doses of both. Metformin hasn’t done much for me, so I am now titrating off of it to see if it helps.

    2)
    Not taking enough Vitamin C: Critical co-factors lists 4mg vs what I'm taking at 1mg. @Ninan has said that she "needed large doses of Vit. C to metablize folate." Freddd in his response said that "without the C, the folate can't be used, rather than a lack of absorption." He also said that myalgias occur in scurvy due to low carnitine production, which was one of my original theories.

    3) Folate in vegetables/salad: I didn't think it was a a problem for me but maybe. Freddd’s calculations that folic acid and vegetable folate can require 5-20x as much methylfolate to overcome it. The math would add up. Also, Freddd has said that with doses above 28mg, there likely is a folic acid/vegetable folate issue.

    4) B-Complex overdriving: Freddd has said that doses of B1,2,3 above ~30mg can increase folate needs. But my amounts seem to be below what he says causes that.


    I am still experimenting and will try new things. I'll still have to figure out how to get back to normal DQ doses. I will update this thread in the future. I will also post my experience in the high-dose methylfolate thread. Thank you.
     
    Last edited: Apr 17, 2016
  4. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,616
    Likes:
    3,595
    Sorry, personally I never tolerated mfolate for more than a couple of days back in 2014.
    I had to take the diet route for methylation due to supplement intolerance.
    In my personal experience,insulin resistance, pre-diabetes and diabetes themselves are the result of impaired folate metabolism (high carb-low fat diet, foods fortified with inactive acid folic, low intake of methyl donors and riboflavin/pyridoxin poor diet).
    Salads need fat in order to activate the natural folate - olive oil, grated parmesan, butter/ghee, eggs. They may take a while to be tolerated until one loads up with methyl donors and eliminates fake fats from the cells (refined oils and excess omega 6).
    Usually those are result of high BP: low folate, low B2, high iron, high chloride.
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

    Messages:
    7,969
    Likes:
    12,815
    Cornwall, UK
    ahmo said:
    @gondwanland has had pretty good results in tracking and eliminating muscle and neck stiffness.
    @Gondwanaland
    Do you have a link/links for that?
     
  6. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,616
    Likes:
    3,595
    This morning my husband didn't have energy to get up, so I gave him MB12, he got, and got neck stiffness. I gave him B2 and it went away. Apparently there is an increased need for B2 when there are too many methyl donors available. B2 also works whenever he has nerve inflammation or a headache.

     
    Kathevans likes this.
  7. Kathevans

    Kathevans Senior Member

    Messages:
    566
    Likes:
    444
    Boston, Massachusetts
    Very interesting. I'm just beginning to notice the interaction. I'd stopped MeB12 and Folate to work on B2, but over time, the same facial tension developed, though very mildly. So, after a week of so off, I began to add in the methyls again--not just for this tension, I have a lot of folate deficiency symptoms--headaches, IBS Diarrhea, stomach upset--while I'm continuing my 50-65mg/day dose of B2.

    I just took some B2 earlier this evening and it definitely relieved the tension in my head that had developed. Now, only a a few hours later, it's back and I'm faced with, what? taking more B2?

    Maybe I'll try a bit more and see what happens. I've been reading the B2 I love You thread and @pogomon actually takes either 200 or 300mg of B2/day to deal with mitochondrial myopathy.

    So I'm working with just these three, Folate, MeB12, B2, chasing each other around...
     
  8. Gondwanaland

    Gondwanaland Senior Member

    Messages:
    4,616
    Likes:
    3,595
    Yup, B2 needs methyl donors and vice-versa.

    B2 resolves headaches for both DH and I. We never take more than 5mg at a time. DH usually takes 3x 5mg daily on a bad day. We both have extreme weird reactions to supps :cautious:

    When DH gets diarrhea only copper supplementation resolves it. I found out about it one year ago and it never failed so far. I have 2mg copper tablets and have crushed one and give him no more than 100mcg at a time. I am still in the first tablet of the jar :lol: It has 100 tablets, they will last the whole life :thumbsup:
     
    Kathevans likes this.
  9. Kathevans

    Kathevans Senior Member

    Messages:
    566
    Likes:
    444
    Boston, Massachusetts
    Well, thanks! I checked my recent--within the last month--SpectraCell Test and my copper is smack in the middle of the 'normal' range. Not that we necessarily trust those ranges. But I do eat both sunflower and pumpkin seeds every day and one of them is high in zinc and the other in copper (I forget which... :rolleyes: ).

    I appreciate your reply because I had been interpreting the headaches as a folate deficiency symptom. But I'm not so sure. In any case @Violetta pointed out on the Oxalate thread that I might have a folate-metabolizing gene that makes metabolism difficult (possilby a correlative to the TCN++ I have for B12?!) and sure enough, she's right. I have it. You might be interested in doing the same at Promethease: SLC19A1. Here's the link to the thread: http://forums.phoenixrising.me/inde...lates-b12-deficiency.36187/page-3#post-716494

    Right now, I have to say, I'm just trying to chase down a rather bizarre symptom, myself--a sort of tight face, cheeks, around my mouth and headaches. Not to mention that chronic diarrhea I had last year may be about to make a comeback.(I thought it was oxalates, but not so sure now...) Maybe you're right, maybe it has to do with B2 alone. I'm going up and down with the Folate dose to try to figure it out... :confused:

    You're lucky that DH and you are similar. Maybe it's twice as likely you're going to solve things with both of you working on it!

    As I titrate down, it's clear, as my body reacts to less and less that what I might have been doing for years could well be the very thing that has caused many of my symptoms. To express one of your favorites: :bang-head:
     
    Gondwanaland likes this.

See more popular forum discussions.

Share This Page