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Why methylation isn't working for me?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by yukito, Nov 15, 2012.

  1. yukito

    yukito

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    Hi,I am from Belgium,we speek french.So Many apologizes for my english beginner level.(I help myself using a web dictionnary)

    I think I have cfs because in my last lab tests.Isaw:
    - glutathion reduced 44 mg% G.R 56-84
    -Coenzyme q10 501µg 670-990
    - E vitamin 7,8µg/ml 10-19
    - Vitamin a 41,3 µg/dl 43-111 despite taking 2000iu(acetate)/day
    -B6 vitamin 94nmol/L 88-456
    My D vitamin,omega 3, zinc and selenium levels were very low before,but are fine now, because I am suplemented in it.

    Since my childhood have had a very poor memory and been very distracted.With a singular way of thinking.
    I have had a life with no real disease until the age of 14.Then the things have got bad,with no more memory and muscular articular an bone pain.
    The last year I found a medical doctor a llitle less dumb than the others I saw before,you may know it.
    He made medical tests than other doctors never did, D,E,A vitamin b12,b9 tsh T2 T3,IGG,and finally ,oméga 3,coenzyme q10 and glutathion the last time i saw him.
    So the last time I saw him.He made me buy NAC, coenzyme q10, b-complex with all the B's non coenzymated,and others.
    I was very exhausted,before that, but after the NAC and the b-complex I was worst.

    So all of that made me conclude that I had probably cfs.


    Since two weeks I started the freddd's protocol:
    -enzymatic therapy MB12(1mg): 1*2*2/day so 4mg dayly
    -source naturals dibencozide (10mg) 1/4 /day so 2,5mg dayly
    -solgar metfolin (800µg) 8mg/day allong the day, with and without meals.
    -all the coenzymated B's separately except the b4.
    -source natural Carnitine fumarate 2*2*250g/day so 1g dayly
    -C vitamin 3g/day
    -potassium bicarbonate 2g/day

    And finally the thing that has permitted me to survive this last year.
    The pyrroglutamic acid in my
    Bio-life calcium pidolate with a little of magnesium bis-glycinate.

    Lately as I saw after two weeks no results with the protocol I concluded that perhaps my pyrroglutamic acid was the cause of the lack of results.
    As it's a glutathion precusor by the gamma-glutamyl cycle.
    So I stopped since yesterday despite I know that my muscle weakness is going to go worst because of that.

    Could somebody help me to understand please?
  2. nanonug

    nanonug Senior Member

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    Without knowing all the details, it's difficult to understand exatly what is happening. In any case, have a look at Table 1 of the following document and see if you identify with some of the symptoms: "Polycythemia From Mast Cell Activation Syndrome: Lessons Learned."

    Let me know if you have any questions.
  3. yukito

    yukito

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    Thanks for the quick response.
    I identified these symptoms:
    Constitutional chills, fatigue, malaise, sweats,increased appetite, weight loss, pruritus in food,elevated IGE rast
    Ophthalmologic Irritated eyes, increased or decreased lacrimation,conjunctivitis, difficulty focusing, lid tremor/
    tic, sterile inflammation
    Otologic Hearing deficit, sterile inflammation
    Oral/oropharyngeal Pain, throat discomfort
    Lymphatic None known
    Pulmonary chronic sinusitis, cough,
    Cardiovascular chest pain
    Gastrointestinal constipation, malabsorption
    Genitourinary decreased libido
    Musculoskeletal Not visually or by radiography verifiably just a lot of pain in all the body and deformable joint, bone fragility.
    Neurologic Nothing by classic tests verifiable.difficulty to prononce words(it takes me a lot of energy and it's not as good like in the past) slow flow of speech.
    Psychiatric Mood disturbances (eg, anger, depression), attention deficit disorder, other anxiety disorders,memory difficulties, other cognitive dysfunction, insomnia
    Dermatologic acarians,goosefoot,wormwood allergies.
    Hematologic None known
    Endocrinologic/metabolic gilbert's syndrom,elevated TSH 3,2 low cortisol.
    Immunologic None known
  4. nanonug

    nanonug Senior Member

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    Given your symptoms, I think there is a decent chance that your problem is some form of Mast Cell Activation Disorder (MCAD). However, only proper testing will settle this one way or the other.

    On the European Mastocytosis Support Network, there is a contact for Belgium. Maybe you'd like to contact that person for a referral to a specialist.

    Meanwhile, if you would like to understand a little bit more about the condition, consider reading this reference document: "Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options."

    There is also a dedicated subforum entitled "Addressing Mast Cell Activation" where you may want to ask questions.

    Good luck!
  5. Red04

    Red04 Senior Member

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    Your symptoms seem pretty standard ME/CFS as well. Look for hidden forms of folic acid and I would eliminate anything not in the exact protocol.

    Also, it may be hard for you to realize the changes as they can occur slowly.

    Are you supplementing calcium, magnesium, and zinc? Keep adding all of the cofactors until you set off the healing. Don't give up. My wife had no reaction to the protocol for two weeks until we added zinc, vitamin E, and l-carnitine fumarate. I am not positive what started the healing as we were adding everything at once, but it was obvious when it happened. Freddd may be able to weigh in here...
  6. caledonia

    caledonia

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    Bonjour.

    On Rich's protocol, there can be a honeymoon period of up to about 6 weeks, where it doesn't seem like it's doing anything. Then it will kick in.

    I'm not sure if Freddd's protocol is the same way.
  7. jimells

    jimells Senior Member

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    Welcome to the forum, yukito. "A little less dumb than the others" really made my day. Thanks.
  8. yukito

    yukito

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    Thanks a lot;) , I will see all that,when I will have a little of free time.



    I am supplementing zinc(50mg) and calcium pidolate (16mg) it's a ridiculous amount but it's enough to prevent the heart problems and to make my articulations smoother(higher amounts bring always side effects).I am not supplementing magnesium(I will if I am able to increase my calcium intakes).
    Thanks, I thought that i could skirt my calcium problems but visibly it's not the case,I am going to find a way to increase my calcium intakes.
    carbonate,citrate,citrate/malate calcium,gives me stiff joints, waters rich in calcium doesn't do anything(if rich in sulfate gives me stiff joints,but not sure),veggies rich in calcium work a little,but it makes me want to scratch my face.
    I am going to try the calcium orotate and see what happens.Thanks again.

    I read that freddd had a big effect after a few minutes of taking methylb12 five stars.

    I guess he was already taking all the basics.

    Thanks.
    :) you're welcome.
  9. Crux

    Crux Senior Member

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    Hi Yukito;

    I found that with having neurological symptoms, I needed much more of the Methyl B12. I'm at 12 mgs. daily now. If I find I need more in the future, I'm going to add injections. Some people may need higher dosages of B12 in order to respond to the protocol.
  10. yukito

    yukito

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    Really? and you didn't feel any start at lower doses?I thought that you could feel at least a little effect that would show you that it was what the body needed, and that you were on the good way.
    Personnally i went until 6 mg of methylb12 and 12mg of methylfolate and felt nothing.I went more often to urinate but that was all I also never saw my urine color go to red, but it went to yellow color with the other b's .

    I added calcium ascorbate 120mg in the morning and 120mg in the night and same amount of magnesium bis-glycinate.
    It's helping, I am sleeping 2 hours less/day.But I am not sure that it's going to last.

    Before that, I added borax 70mg (7mg boron) as I read it could help. and suddenly my calcium and magnesium citate/malate gave me less feeling in the muscles.So I am now on Ca ascorbate,Mg bis-glycinate and no more taking borax.

    Another strange thing is that my voice is much deeper and hoarse that before, my low notes are like baritone notes,while before my voice was like a tenor-voice(not a good one).

    If someone has had similar symptoms, please come.

    Thanks.
  11. Crux

    Crux Senior Member

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    Hi Yukito;

    It was 5yrs ago when I started methyl B12, so my memory of it is vague. At that time, I did not know of Freddd's protocol. I don't remember having start up symptoms; I don't remember feeling much of a difference for about a month, and I was taking 5 mgs sublingual daily. Even after a month, I still had very strong neurological symptoms.

    I think it took several months to see improvements. I continued the mb12 because of the information and case studies I had read about it. Still, I spent some more years realizing that I needed more mb12, not less.

    I don't know if this applies to your case, but when my B12 was low, my voice was sometimes hoarse.
  12. yukito

    yukito

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    Thanks :) .Sorry for the late response,have had a hard time with the protocol.Have experienced some start-up adding a lot of fat fish to my diet(probably the omega 3's),so it was probably something that was missing.After that I have had an increase on muscular strenght,for a few days and simultaneously a decrease in my mental capacity(less short-term memory,and even less conentration)
    Also a weird thing is that my body went to the left,and the most of my weight went to the left leg.Progressively my condition went bad even adding all the basics and trying various ratios for the methylfolate and mb12/adb12.
    I couldn't stay on the protocol as I returned to school and it was decreasing the little mental capicity that I had.
    I will try anew later.
  13. Crux

    Crux Senior Member

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    Hi Yukito;
    I looked over the amounts of supplements you've been taking and realized that the methylfolate dosage has been extraordinarily high. ( 8-12 mgs. daily ?) Although there are prescriptions for this amount, and some few people require it, most people don't need such high dosages. ( In my case, the methylfolate dosage increase to 2-3 mgs. daily increased inflammation, disrupting all progress. I've had to stop folate for 3 wks. I may only need a small dosage, if any.)

    Adb12 can increase energy greatly, but in excess, it can be overstimulating.

    Mb12 can be overstimulating too, and it may take a while to find the right dosage, because it requires time to heal nerves.

    It's true that Omega 3's can amp up cognition too much as well, but that usually happens with supplements, although anyone can have sensitivities develop. ( I see how this could happen, possibly from taking certain other supplements in excess.)

    Personally, I have found the Mb12 to be the most helpful with my own cognitive dysfunction. ( It did take a long time to improve, 1 yr. or so.) Potassium has helped with my dry eyes, anxiety, and insomnia. Zinc has also helped with anxiety, insomnia, and dry eyes; but I have to be careful with the dosage - too much can be overstimulating, paradoxically. ( This is not easy for me either.)

    I'm glad that you are functioning well enough to return to school, even given the continued health problems. Many of us agree that when problems arise from trying these protocols ; stopping them for a time, then restarting, one by one, with much lower dosages, is a good option.
  14. yukito

    yukito

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    Hi crux,
    I haven't been on the forum in a long time.

    Concerning the high doses of methylfolate (8-12mg yes), that are the doses that I need when I am on 700 mg calcium ascorbate(70mg elemental calcium) ,Also while taking calcium,I can support or I need 10-15x more mb12 .from 100µg to 1,5mg.
    The benefits from the adb12 become also less obvious,as calcium provides already energy,don't know if causing a little of inflammation.

    Calcium changes a lot of things,
    It relieves me decreasing my capacity to fee lthe pain i think,but at the same time I lose mobility and when I take mb12 I recover some mobility.
    It makes my fingers to become broader,I am not sure if it is my bones becoming wider or inflamation or both.

    Two years ago I didn't supplement calcium and vit D,And my fingers were narrower.
    After one year I continued vit D ,but just couldn't stop calcium If I did,at the same time I acquired mobility,and became more aware of my body (good things) I had a lot of acute pain,and my muscular strength decreased(bad things).

    I have tried adb12,mb12,methylfolate and changed lcfumarate (source naturals) to carnitine free base ,sigma-tau(the one that works for everybody)
    And thanks to that I became able to stop calcium I was nervous and had pain on my body ,had less energy too but
    no more hearth problems,and my palm lines didn't become red and made me suffered as before.
    Without calcium I need like 4mg adb12 100µg mb12(more makes me feel badly tired) , 500 mg carnitine, 2,4.mg metafolin.
    These 4 things allowed me to recover some mental capacity, lost while my mk-4(2mg/day) trial.
    But It stops there,I Return to my start point before mk-4 and before calcium.
    It never shows some new healing.or new things.My potassium needs don't seem to increase.
    magnesium or zinc needs increase a little ONLY if I take CALCIUM, not otherwise

    about dry eyes and anxiety while trying mk-4 all alone with or whitout calcium,I had these symptoms and zinc helped , and potassium a little too ,lecithin also.

    At the moment it's school holydays(2 weeks), so I am trying again fred's protocol.
    Something I noticed is if I put any vitamin or mineral on my tongue I feel what effect it is going to do if I swallow the capsule or the tablet.
    I have the same effect as if I was trying the substance on a empty stomach an I waited 20 minutes.

    About school,well It's almost the end and at least a miracle,I don't think I am going to succeed.
    The old me could have succeed without problem,but he doesn't exist anymore, c'est la vie.

    anyway,all the best,keep improving.
  15. Crux

    Crux Senior Member

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    Hi yukito;

    I really hope you succeed!
    I also hope the protocol will help this time. I noticed that the Calcium Ascorbate you take is mostly vitamin C, which is good, but some people find that it works better when you take it at a different time than the folate, B12, etc.

    Good Wishes!
  16. Freddd

    Freddd Senior Member

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    Hi Yukito,

    First a number of questions. Tell me how you are taking the ENZY and Anabol b12s? In the basics I don't see a lot of things that can hold everything back; Vit D (3000-5000 IU), E, A, enough zinc? (50mg maybe), enough magnesium, omega3 oils (2000mg or so of active components), lecithin. Then L-carnitine fumarate may be a roadblock, but the basics should be started before so you can know more about it by how it starts up.

    I assume you have symptoms. Go to the symptoms list on the Active B12 protocol basics and make a list of the symptoms, ALL of them that you have. That might tell what is missing.

    I saw your second post after I posted this. it still stands, quantities of supplements, symptoms etc. Let's see what is going on. Make a list of all supplements, amount and timing of doses etc.
  17. yukito

    yukito

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    Thanks:)
  18. aquariusgirl

    aquariusgirl Senior Member

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    I did methylation support for about 4 years. ...I thought it was the answer.. but four years later I quit...I have just figured out I need BH4 and lithium...

    I was sucking down large amounts of hydroxocobalamin for YEARS. Turns out when I take lithium (needed for B12 transport) even a little hydroxocobalamin causes serious detox.

    As you may know, dr amy yasko is now saying lithium "has to be in balance" before you start using methylcobalamin and 5 L Methyl Tetrahydrofolate..

    Boom. I'm sure this doesn't apply to everyone....but I needed to fix something else before I could go after b12 and folate.

    Guess I just figured out which subset I belong to.
    Beyond likes this.
  19. yukito

    yukito

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    Hi,fred

    I put the ENZY between my lower lip and gum and the source naturals dibencozide between my upper lip and gum.
    Both 100min.

    CALCIUM changes a lot for me
    If not supplementing calcium I take:
    100µg mb12(if more it makes me badly tired and i become unable to concentrate)
    3mg adb12(gives me some energy)
    2,4 to 4,8mg metafolin in 4 divided doses are enough.

    if supplementing calcium ascorbate 700mg (70mg calcium) i take:
    1,5mg mb12(it gives some mobility and sensibility lost by taking calcium)
    3mg adb12
    12mg mg metafolin in 5 divided doses(I need this dose to become less nervous)

    I take also :

    -750mg carnitine freebase (sigma tau)on an empty estomach (also ALCAR seems to work better than LCF for me)
    -700mg vitamin c
    -70mg elemental calcium(discontinued since yesterday)
    -zinc 9mg
    -manganese 2mg
    -molybdene 300µg
    -chrome 200µg
    -vitD3 2000iu
    -vitA retinol 1500iu(i thought I was getting more eating fish but I just checked an It seems I was wrong)
    I am going to increase this one.
    -b vitamins each one separetely as needed( put on my tongue if it doesn't feel bad i take it,until it feels bad)
    usually the demand for calcium pentothenate and P5P increases after taking the carnitine.
    -lecithin soya 1200mg or sometimes just 3 eggs (lecithin increase my zinc needs )
    -I get vitamin E by my olive oil and rapeseed oil.
    -Omega3 I eat 300g of fish everyday essentially mackerel.

    I don't take Magnesium it makes me feel bad like excess of mb12,inducing some defficiency perhaps.
    if I increase zinc it makes me feel bad most of the time.
  20. Freddd

    Freddd Senior Member

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    I don't take Magnesium it makes me feel bad like excess of mb12,inducing some defficiency perhaps.
    if I increase zinc it makes me feel bad most of the time.

    Can you explain in full detail for each item, mb12, zinc, mag "feel bad"?


    if I increase zinc it makes me feel bad most of the time.

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