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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

THE STAGES OF METHYLATION AND HEALING

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Freddd, Feb 7, 2013.

  1. colinmb

    colinmb

    Messages:
    29
    Likes:
    0
    Me again Freddd, sorry! I didn't hear from you following my last post, so I just had a go at changing something to see if anything would change. All I did was divide the folate dosage, keeping the total amount (800mcg/d) unchanged, and double the bedtime potassium to 2g. Well, possibly coincidentally, for the following 2 weeks, Anna was on what looked like a major recovery path - she was getting all sorts of unaccustomed sensations like those little fingertip pains - and quite a lot of her symptoms were improving noticeably. But then a week ago, that stopped - both the unaccustomed sensations and the improvement in symptoms, and she's sinking back to her prior state. Any ideas? Does the body become somehow used to the regime, and stop responding, so that it's necessary to increase amounts of some things over time, to maintain the effect? If so, which things? Trial and error? Which ones most likely? She's still taking only 1 x B12 Infusion and 0.5 x Dibencoplex - should we try increasing one or both? Or the LCF (currently 1x 855mg)?
  2. colinmb

    colinmb

    Messages:
    29
    Likes:
    0
    Hi Ahmo. Thanks to guidance from Freddd as well as this from you, Anna had been making some good progress, but it's all come to a halt as of a week ago. Would you mind looking at my most recent couple of posts to this thread and seeing whether you can offer any suggestions?
  3. ahmo

    ahmo Senior Member

    Messages:
    1,175
    Likes:
    761
    Northcoast NSW, Australia
    @colinmb, Freddd hasn't been posting for awhile.
    Sounds to me like you need to increase the folate. Freddd, when I finally asked directly after having spent hours searching for the answer, suggested increasing folate at the rate of 100-200mcg every day or 2. I started that and have been gradually increasing ever since, now at 11.6mg, with 15mg MB12 and 7.5 mg AdB12. I have a very small set of symptoms that I monitor for the need to increase folate: acne, scabbing on scalp, hair loss, pimples on back of neck. They really come and go as quickly as overnight as I change my dosages.

    For you, at present, the fingertip pains might be a marker: folate is working, things are improving when she's having these sensations, not much happening when she's not. That won't always be the case, at some point something else might manifest, the tingling might not continue. The real key for me was to not be afraid of raising the folate. I had, early on, increased each of these, B12 and folate, independently, without raising the other. both gave me scalp outbreaks. I'm now on top of my symptoms, and can supplement intelligently. AdB12 seems less tied to these symptoms, and Freddd has mentioned that 1/2-1 cap seems to be the limit needed and useful.

    How do you know you need to increase B12? Well, for me, when I've increased folate, occasionally I'll get other symptoms, especially weepy eyes, restlessness, a bit hyper/euphoric. When I then take a B12, I've found these symptoms to cease almost immediately. I rarely get headaches, but have a lot of weirdness with my ears, changes in wax, heat, some drainage. I've not worked out whether it's related to B12 or folate, or something else.

    I strongly suggest you look into muscle testing. there are a number of youtube vids. The real trick is learning to trust yourself. I was introduced to a method of self-testing just as I was descending into ME, so I've now had a long time to grow it. It works for me, it's how I adjust all my supps. I

    The K+ is needed to balance the reactions. Good you're giving a reasonable dose. Here's a great explanation from @whodathunkit today:
    Hope this helps. Best to you, ahmo
    Last edited: Mar 6, 2014
  4. colinmb

    colinmb

    Messages:
    29
    Likes:
    0
    Hi aymo, and thanks. Did the end of your penultimate para get lost? (It ends with 'I'.) Is there anything anywhere that relates muscle testing to what we're trying to do here? You're taking far greater amounts of the folate, MB12 and AdB12 than Anna is. I presume you started low and gradually built up with all of them, as you did with the folate. Were they 'working' at low levels, but you had to keep increasing them to keep the effects going? That's what I'm wondering with Anna - as I say, she was motoring along nicely for a couple of weeks on the low initial amounts, and then stopped. Do you think somehow the process needs ever greater amounts of fuel to keep going? If so, do you try and anticipate by increasing as a matter of course, or only when you feel yourself sliding back?

    Your folate level seems high in relation to your MB12? Is there a max ratio to avoid methyl trapping - or does that vary completely between individuals?

    15mg MB12 - is that 15 ET B12 Infusion tabs behind the upper lip - not simultaneously, I presume, but split through the day, so basically, whenever you're not eating, you have one or two of these behind the lip (given that you have to try and keep it there for up to 2 hours)?

    Re the AdB12 (Dibencoplex?), these don't seem to work at all well behind the lip. What do you do? Is it OK to swallow?

    We're following your advice and upping the folate in steps from today. Also increasing the B12 Infusion from 1 to 2 (as I'm not sure it's a good idea to increase folate without increasing B12 - though as yet we haven't the slightest idea of optimum ration for Anna).

    Anna has always had acne - hasn't increased as part of the current backsliding, and didn't go away during the fortnight when she was doing well - which may mean she was still not getting enough folate even then - a warning that the improvement wasn't going to be sustained at that level of folate? Also, I don't know if skin complaints generally are a folate sign, but since she's been backsliding, she's been getting a resumption of strange dry/discoloured skin patches, many of them in exactly the same places on both arms, for example.

    Regarding the B12, previously Freddd was suggesting 1 is enough - but he may only have meant for achieving startup. Keeping the process going is another matter perhaps. She's never had the restlessness or euphoria you mention, though she does get weepy eyes, and that was among the things that did improve during her startup fortnight.
  5. ahmo

    ahmo Senior Member

    Messages:
    1,175
    Likes:
    761
    Northcoast NSW, Australia
    @colinmb, looks to me like that "I" wasn't the beginning of anything.
    Muscle-testing can be used to test for whether supps are wanted by body.

    Here's a recent post describing "donut hole insufficiency".
    My MB12 and folate levels are actually quite close: now on 15mg B12, 12 mg folate. This close ratio is what keeps me out of symptoms. When I add folate, I can get weepy eyes, runny nose, irritability. I take a B12, and the symptoms almost immediately stop.

    I've just begun using Country Life 5 mg MB12. Freddd's been using this, last post of his I saw said he was using both this and ET img. My body seems quite happy with this new brand. I divide my doses, first early AM after my first folate dose, then after breakfast, and 3rd, midday, with my midday folate. Either way, 5mg or 4-5 x1mg, tuck into gum and leave it there, up to 2 hours.

    I'm using AdB12 from capsules (Anabol Naturals). I pour 3/4 cap behind lower lip, it stays there for a couple hours, as per Freddd's recommendations. Their new formula is tablets, I haven't used them.

    Yes, start-up, not maintenance.

    I reread your posts. You asked earlier re gene testing. It's been great for me, especially because it verified my need to treat for sulfur intolerance before charging ahead w/ methylation. And my single homozygous defect (MAO-A) is the answer to why I have such problems with histamines. I could have managed it all with symptoms only, but would have been less certain about direction to go. But it's not essential. On the one hand, I say it's the best $100 I've ever spent. But on the other, thinking about it just now in relation to Anna, I recognize that what's been the most valuable thing for me is that reading my methylation panel is like reading the story of my life. It's all there, decoded. After 10 years of disability, and a lifetime of sequential ailments before that, there was illumination. THIS is what's been underlying it all. And, tracing it back through the stages of healing myself, beneath the mineral and thyroid deficiencies, at the core is life-long B12/folate deficiency. Ta da!

    I'm unclear about Anna's symptoms, except for cognitive, energy impairments. What sort of diet? I'd suggest no gluten or dairy, at least for a trial, to see if anything changes. I've reread your difficulties interpreting the long list of symptoms. I'd suggest making a list of all of Anna's symptoms, so you/she can track them as you try different things. Epithelial cells are especially affected, so skin things are a marker. Acne might or might not be one of Anna's symptoms. "Has always had acne"...how long is always?

    Here are a few links to posts from Freddd which might help you identify symptoms. One of mine has been blood blisters in my mouth. When I posted a thread asking about this, no one else seemed to have the problem. Freddd suggested folate. This is when I began pushing my levels up, successfully.
    http://forums.phoenixrising.me/inde...uartet-and-other-nutrients.27482/#post-421506

    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-17
    Freddd: Approximate timing of my startup of individual items that being considered here, this gives a quite distinctive pattern for each nutrient or set of nutrients: 03/04/13, Version 1.1 Long List

    http://forums.phoenixrising.me/index.php?threads/the-stages-of-methylation-and-healing.21725/page-15
    Freddd: This is a list of symptoms that are mine, and others experience of these nutritional items in relieving their symptoms, and in a very few instances reflect research and successful practice, such as p5p for Hcy and Liver extract studies of several disorders in old journals. In some instances the same symptoms might have different combinations of nutrients.

    Ok, enough for today. Best to you, ahmo
    Last edited: Mar 7, 2014
  6. colinmb

    colinmb

    Messages:
    29
    Likes:
    0
    Thanks a lot for that, ahmo - it helped. Delayed response because I always think I shouldn't clog up the board just to say thank you. Though I might have more to say if I waited a bit, but I haven't, as Anna seems to be getting along reasonably well now we are slowly increasing the folate and B12. She has all sorts of odd sensations - little twinges, localised hot/cold feelings - she says the sensations are actually pleasant except sometimes they get stronger and more like pain. They are very intermittent though - she can go a couple of days with nothing, and then have them for several hours - usually late evening and overnight.
  7. ahmo

    ahmo Senior Member

    Messages:
    1,175
    Likes:
    761
    Northcoast NSW, Australia
    @colinmb glad to hear things are progressing:thumbsup:
  8. danny0

    danny0

    Messages:
    4
    Likes:
    0
    I have a healing pattern that I think is odd. For the past 15 years I've had on and off brain fog and fatigue with back and neck pain - and unbalanced vision or fuzzy on the edges. The symptoms are at their worse after a stressful event or during periods of excess coffee consumption. The last two episodes happened in the past few years; after my dad passed suddenly and the most recent was after a panic attack that was caused by throat and nose inflammation that lasted for 5 days... I thought I was going to die - went to every doctor you can imagine but at the end they sent me home with Xanax.

    For 2 months now I've been taking mb12, methylfolate, TMG, p5p, magnesium, zinc, vitamin C, omega 3, cur-cumin, probiotics. This has been the shortest healing period in 15 years and the first time I've followed a protocol.

    It starts very slow with no sense of hope but when it gets going its a 2 day cycle. Every other day becomes manageable. Then it's one day that's good and half of the next day that's not so good. The next stage is everyday becoming manageable with gradual healing that follows. Exercise usually leads to a setback.

    Can anyone make sense of this? I am homozygous for BHMT 02 and 08, MTHFS, DAO, MTHFD1, TCN2,. Heterozygous for MTHFR C6772 and a few others.
  9. Lillybelle

    Lillybelle

    Messages:
    95
    Likes:
    63
    Australia
    Anyone used "Source Naturals" forMethyl B sublingual and have any opinion on the Brand's effectiveness?
    If not can anyone recommend Country Life or Thorne research as brands?

    Also to absorb 1,000 mg of mb and ad12 do I need to take 5,000 sublingual?
    Sorry if this has been covered previously. Any help appreciated.
    Many Thanks
  10. ahmo

    ahmo Senior Member

    Messages:
    1,175
    Likes:
    761
    Northcoast NSW, Australia
  11. Lillybelle

    Lillybelle

    Messages:
    95
    Likes:
    63
    Australia
    Thanks ahmo much appreciated:)
    Have you had success with this protocal? Is Fredd still on it? I read via Dr. Myhill (who collaborated with Rich) that she says once you become a good methylator you can stop the protocal. From this thread it seems even those who have healed are still on it?

    Your views?
    Any other views?
  12. Lillybelle

    Lillybelle

    Messages:
    95
    Likes:
    63
    Australia
    Also, Anyone out there who knows which type and how much potassium is recommended. Iherb has Potassium gluconate, Potassium citrate, Potassium Iodide and Potassium Chloride?
    Also, amount of Lcarnitane Fumate?

    Thanks again
  13. ahmo

    ahmo Senior Member

    Messages:
    1,175
    Likes:
    761
    Northcoast NSW, Australia
    @Lillybelle I've had terrific success, now a year on the protocol. With my genetic defects, I don't expect to be off the protocol. However, I hope that as my body continues healing I'll be able to reduce the amounts of supps. I've already been able to do so after significant detox.

    I find K+gluconate powder the most versatile. I tried chloride for a short time, but it didn't save any money and was vile to use orally. This is one of the things I've been able to reduce recently. typically I used 800mg AM/PM, now only needing PM dose. I needed a lot mofe when actively detoxxing, also more when increasing folate.

    I take 1x Dr's Best LCF, midday and PM. cheers.

See more popular forum discussions.

Share This Page