1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Dr. Kerr, I presume?
Clark Ellis brings us a rare interview with British researcher Dr. Jonathan Kerr who is now living in Colombia.
Discuss the article on the Forums.

Those who have benefited from B12 and methylation treatment

Discussion in 'General Treatment' started by knackers323, Jan 10, 2014.

  1. knackers323

    knackers323 Senior Member

    Messages:
    867
    Likes:
    174
    I have read of many people getting benefit from B12 but despite initial promise, over time the effect seems to be limited.

    I was wondering if someone who has been down this path would be willing to tell me how this thing usually pans out.

    It is very early days for me but the first few days on B12 I felt much better and thought that methylation may be actually a big part of my health issues.

    However as usual it has not continued and am now in a bit of a crash.

    If it were a methylation problem, is this how it would usually go or was I probably just seeing a boost that even healthy people would get from high dose B12?

    If anyone has any input it would be great
     
  2. Ambrosia_angel

    Ambrosia_angel Senior Member

    Messages:
    440
    Likes:
    234
    England
    Well I think the whole point f methylation is that it is continuous. So I'm not sure if people would consider a few b12 shots and continuous because you need take a whole range of other supplements. That's what I've gathered anyway :)
     
  3. joshi81

    joshi81 Senior Member

    Messages:
    171
    Likes:
    25
    Rome,Italy,Europe
    It's interesting to know if it is a enrgizing effect of b12 that fade away or something happen after startng b12 that make the effect to vanish (for example a kind of methyl trapping) you could ask @Freddd maybe he can answer..
     
  4. Freddd

    Freddd Senior Member

    Messages:
    4,574
    Likes:
    954
    Salt Lake City
    Hi Knackers,

    Several factors may be at play. The most usual are that some cofactors are needed, like l-methylfolate, AdoCbl, LCF, magnesium, zinc, vit D, b-complex, d-ribose etc etc ect. It can be any one or any combination of 20 items or more. Arfe you taking all the basics, all 4 of the deadlock quartet titrated for effectiveness and all the critical cofactors and not too much of b1, b2, b2 and not any glutathione or NAC?
     
  5. knackers323

    knackers323 Senior Member

    Messages:
    867
    Likes:
    174
    This is exactly what I did. I realise it is very early days but its disappointing when I seem a benefit and now its gone.

    I took a 855mg tablet of l carnitine fumerate and noticed nothing so I took 5 and noticed a spike in energy in the brain and body. I did this another couple of times and got the same effect. Now when I do it nothing happens. I dropped it back to 2 tablets daily.

    I added methyl B12. Again one 5mg tablet did nothing. So I went up to 5 and then 10 at a time and didn't notice a whole lot. Now dropped back to 2 daily.

    Added methylfolate 800mg tablets. Have been all the way up to 10 at a time with no effect. Now dropped back to 2 per day.

    Then I took one 3mg tablet ad12 and wow. Felt the effect within an hour. Couldn't sleep that night. Took a few more over the next few days and the overwhelming fatigue went away but I was left really tired, but a more natural tired. I thought I was onto something.

    However the progress slowed up. I tried taking 50mg dose over 4 hours and didn't see much effect. Have dropped it back to 2 tabs daily.

    I see other people unable to take 1/8 of these tablets without getting big effects.

    I am wondering if methylation is not my problem but got an effect from boosting my B12 levels as even healthy people would?

    What do you guys think?
     
  6. Freddd

    Freddd Senior Member

    Messages:
    4,574
    Likes:
    954
    Salt Lake City
    Hi Knackers,

    I would suggest that you are misinterpreting your results. You are in the process of success. Startup is over. AdoCbl usually only makes a noticeable difference once or twice. Then it is in equilibrium and then the level isn't changing and becomes "normal". Same with MeCbl, Methyl folate and LCF. The feeling of change goes away when you reach equilibrium. The feeling is upon entering the "chamber". Being in it constantly fades to no feeling. That is when everything is healing and normalizing. Very uneventful. Patience. Startup reactions go away. Congratulations. Just keep it all going and become sensitive to more subtle differences, the next layer.



    I see other people unable to take 1/8 of these tablets without getting big effects.

    It is quite easy to never take enough of the right balance so one never gets out of startup. Lots of people do it .
     
    Last edited: Jan 11, 2014
  7. knackers323

    knackers323 Senior Member

    Messages:
    867
    Likes:
    174
    Ok. Yes I realise it is early days for me yet. As I can tolerate any dose with no ill effects but also no notice in positive effects either.

    What amounts do you suggest I settle at for now?

    Thanks

    I also forgot to mention that at one period there, I think it was after adding the adb I had about two days of heavy urination.
     
  8. Freddd

    Freddd Senior Member

    Messages:
    4,574
    Likes:
    954
    Salt Lake City



    I also forgot to mention that at one period there, I think it was after adding the adb I had about two days of heavy urination

    Excellent. That is a good sign.

    I found that 3mg AdoCbl once a week maxed my energy output. However, I take 20mg AdoCbl (oral mucosal) a day now for the anti-inflammatory effect and CNS healing via myelin regeneration. That is also a result of trial after trial. I have been fiddling with the balance. I can tell when I hit that neurological sweet spot within a few hours. I would settle on 15mg or so a day of sublingual MeCbl in 3-5 doses, also dividing the AdoCbl in the same time. Then just above the amount needed to get rid of all the quick folate insufficiency symptoms you know of. The long term ones will become apparent in 6 months or less usually. The folate you can home in on by changing to 500mg a day for a week and then trying 1000mg the next week and back and forth a few times. If there is a difference, you will learn what it is. It gets more subtle from here. Make sure to keep potassium in balance. Pay close attention to what is changing and what isn't. Keep a diary. You will learn what the various balances between AdoCbl and MeCbl for instance. CNS healing feels "irritated at the world" or something like that for a while. If you have neuropathies in the body they often start healing with jolting pains, becoming steady pains of various kinds and then severe tingling , hypersensitivity and finally more or less normal sensation. Good health.
     
  9. knackers323

    knackers323 Senior Member

    Messages:
    867
    Likes:
    174
    What quick folate insufficiency symptoms are you referring to?
     
  10. Freddd

    Freddd Senior Member

    Messages:
    4,574
    Likes:
    954
    Salt Lake City

    Hi Knackers,

    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

    Looking at the list above, the bottom grouping is set of both CNS and longer forming symptoms that are very serious. It is of damaged nerves, not functional items. It appears to take at least 6 weeks in methylblock to start having these serious neurological damage symptoms and it can take years to heal, if ever. Recent damage reverses more easily than old damage.

    Most people have a quick onset group from the upper grouping but not all of them. So some people have fast shifting moods with PFD turning on and off, like my edema and angular cheilitis. Then I get skin lesions, then body inflammation (a week after onset), heart palpitations, flu like symptoms. Then about 3 weeks in MCS, asthma, allergies, more inflammation, painful joints etc.

    away. I had been at 20mg and everything disappeared on that. I decreased by 1600mg a day until 8mg than 800 at a time every few days until I saw edema and then went up until all the symptoms that had appeared to go away. For me it took 3 months for the peeling finger tips to occur after the angular cheilitis and edema went away after I stopped the extra B1, B2 and B3.

    So you need to learn yours, the order of onset and so on. That is if you have periodic paradoxical folate deficiency episodes. Otherwise you just have to find the place where the next 25% makes no difference after a couple of weeks. Then cut back most of that increment and leave it there unless you notice any worsening or return of the familiar symptoms. learning to titrate to home in on the smallest fully effective dose. And sometimes for reasons I don't know I need an extra dose of methylfolate. And it has always changed up and down over time. It's like we have to solve our own constantly changing maze.

    Maybe that is one of the things that goes haywire in us with FMS/CFS etc. Maybe the body's ability to self regulate methylfolate or fluctuating abilities to deal with other folates and other things goes haywire. Lot's of things go haywire with the deficiencies and not all of them heal necessarily.
     
    PennyIA likes this.
  11. knackers323

    knackers323 Senior Member

    Messages:
    867
    Likes:
    174
    Hi @Freddd
    The last few days I've been getting a headache. I thought it might be from to much folate as I remember getting a similar headache when I tried deplin years ago.

    Have taken no methylfolate today and haven't had a headache but it just kicked back in. Any ideas? Thanks
     
  12. Freddd

    Freddd Senior Member

    Messages:
    4,574
    Likes:
    954
    Salt Lake City
    Hi Knackers,

    Do you have what I called to myself "veins of fire" in your scalp? What about sore or tight painful neck muscles? Jaw muscles? Scalp muscles? Facial muscles? Even a light touch on these for me used to send me through the ceiling.
     
  13. knackers323

    knackers323 Senior Member

    Messages:
    867
    Likes:
    174
    Hi Freddd

    No I don't have any of those things. Just a dull kind of throbbing headache and a the gains I previously seen are pretty much gone, even my skin looks as though it is flaring up again.
     
  14. Freddd

    Freddd Senior Member

    Messages:
    4,574
    Likes:
    954
    Salt Lake City


    Hi Knackers,

    As you see it can be either potassium or folate deficiencies. Also I got terrible headaches from CoQ10 from dangerously increased blood pressure during the first year of healing. Skin problems would likely be folate deficiencies, at least it is for me.

    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, MeCbll after photolytic breakdown onset.

    Itchy bumps generally on scalp or face that develops to acne like lesions in a few days from start.
     
  15. Ninan

    Ninan Senior Member

    Messages:
    261
    Likes:
    200
    I took it during five years and had to up the dose constantly. In the end (2011) I took 4 mg methyl (subcutan) every day and then it stopped working. I tried Fredds protocol to get it to work again but nothing happened.

    When I worked it took me from bedbound to working 50-100 %. Now I'm bedbound again.
     

See more popular forum discussions.

Share This Page