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THE STAGES OF METHYLATION AND HEALING

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

  1. Critterina

    Critterina Senior Member

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    physicsstudent13,
    It's entirely possible that more methylfolate will fix the acne-like lesions, but without knowing your mutations and what exactly the B12 you were taking was, and if it might have been degraded, per Freddd's post to me #337 above, well, it's just hard to say. Increasing the methylfolate is working for me, although I did add folinic acid (for SHMT +/+) and adenosylcobalamine just to be sure.
     
  2. physicsstudent13

    physicsstudent13 Senior Member

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    I actually want to know if the acne is a sign that something is wrong, I feel out of sorts and a little nauseous when I take the sam-E 1.4g it seems.
    I took 72g of NAC, was probably too much after the liver damage. is there a thread on the mechanics of what the m-folate adenosylcobalamine and folinic acid does?
     
  3. Critterina

    Critterina Senior Member

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    Wow, 72g of NAC! I thought that the 2-3 grams that I was supposed to be on was a lot.

    I think the consensus is that if the acne started after you started taking the methylfolate (Metfolin) and methylB12, that probably increasing your methylfolate will get rid of it.

    I don't have any experience with SAMe, since my practitioner put me on 1.5 g methionine supplements instead. But I do get some nausea sometimes after my supplements. Don't know what causes it. I'm thinking about SAMe. I read that rats supplemented with methionine have shorter lives. Also that it take ATP to convert it to SAMe, so my low energy after taking the supplements also makes it seem like SAMe would be good. I plan to talk to her about it. The thing is, I'm BHMT +/+, so if I supplement with TMG I can better recycle the homocysteine back into methionine.

    I would love to know what the adenosylcobalamine does and how it does it. If you find out let me know.

    The other two I understand, but I don't have a thread to point you to. Are you familiar with the diagrams of the folate and methyl cycles? There's one at http://www.heartfixer.com/AMRI-Nutrigenomics.htm, but it doesn't show the SHMT enzyme and the folinic acid. The SHMT enzyme converts the THF into folinic acid it two steps. These steps occur (but aren't shown) in the upper left of the folate cycle, between where it says THF and where it says MTHFR. The MTHFR enzyme really acts on folinic acid, not on THF. Therefore, if you have an SHMT mutation, you can supplement with folinic acid and as long as your MTHFR C677T is -/-, you can make MTHF. But if you're C677T mutated, supplementing with folinic acid may not help as much. Clear as mud???
     
  4. physicsstudent13

    physicsstudent13 Senior Member

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    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880451/
    according to this article folate deficiency helps liver repair
    "An important and novel finding of this study was that folate deficiency significantly increased hepatic OGG-1 and MGMT repair activity (approx. 25% for both proteins). Exactly how folate deficiency modulates DNA repair remains to be established. .....Liver and colon DNA was hypomethylated approx. 2% and 5% respectively in rats fed a folate deficient diet relative to DNA from animals in the control group."
    I took the 1600mcg of methylfolate and the next day I woke up foggy and tired so I don't know if I need it, aren't some people hypermethylators?

    I would probably stick with lower doses, I took the NAC over 7 days- not all at once after liver damage after surgery because my AST ALT blood tests showed 80/260 after anesthesia so it was likely that there were toxins in my body. I was bedridden and weak and couldn't speak well for weeks.
    http://en.wikipedia.org/wiki/S-Adenosyl_methionine
    http://umm.edu/health/medical/altmed/supplement/sadenosylmethionine
    http://www.ncbi.nlm.nih.gov/pubmed/23703836

    I'm not sure if the sam-E is helping, it doesn't seem to raise energy levels like NAC which seems to have an effect on cortisol- it gives me queasiness and nausea. by the way I was curious about the methionine long term effects, what does it do for you and why does your doctor give it to you?
    it seems NAC helps clear the body of medium metabolites and can be synthesized from vitamin C, selenium with cysteine as a catalyst. do I need to be sure I have a mutation?
     
  5. Critterina

    Critterina Senior Member

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    You know that was in rats. They say, "We speculate that the inability of colon tissue to respond to folate deficiency occurs in humans and may increase the potential for malignant transformation."

    I've heard that some people are, and that it corresponds to mutations in the COMT gene. But there have been several people on this site who are COMT +/+ and don't seem to be overmethylators. There's a recent thread about that, but I can't find it.

    My nurse practitioner told me to use the methionine because my amino acid test results were low, that's all. I started having abdominal bloating and thought it was due to the methionine and NAC (not sure why I though this, but I was probably wrong.), so after 3 months I had my blood test and stopped it. I stopped all my sulfur supplements: Me, NAC, ALA. I also did a low sulfur diet, increased my MTHF from 1 g to 2 g and added folinic acid, all that first week. My bloating and acne went away and I lost almost 7 lbs that week. I didn't want to stay on a low sulfur diet (which is also low protein and I've had muscle wasting issues) so I stopped that diet and the acne returned quickly, the bloating returned slowly (2 weeks, same 7 lbs). I'm guessing I still have a diet/gut bug issue, although I test negative for bad bugs and allergies.
    NAC didn't help my energy levels at all, maybe the opposite. And when I added folinic acid, I could barely stay awake - starting about 20 minutes after I took it, so the onset was apparent. I used the Heartfixer/CBS recommendations for energy levels. I was already taking the Co-Q10, but added the NADH, Carnitine fumarate, and D-ribose. That seemed to do the trick.
    What does NAC do to cortisol? I tested low on cortisol, but after two months of bovine supplements and 100 mg transdermal progesterone (a substrate for cortisol, which had been undetectable), I passed my ACTH challenge test.
    I too have wondered about long-term use of methionine. It's an essential amino acid, and what I was taking was the RDA, so I'm not sure it's too dangerous, and who knows what the translation is from the rat study to humans, or the proportion of Me to rat body weight they used.
    So, in all fairness to my nurse practitioner, she only did the MTHFR test, so she didn't know the rest of my odd set of mutations. I had been doing 2 months on an elimination diet that incidentally was high in TMG and animal protein when I first saw her. I figure the TMG may have been supporting regeneration of methionine, and it dropped when I stopped the elimination diet. I plan to start supplementing it when I get my basic folate/B12 stuff tweaked. I'm more interested in promoting recycling of homocysteine than in taking Me. And if that isn't enough, then I will consider supplementing directly, but I'd rather use SAMe than methionine, not only due the the rats dying younger, but there's an energy penalty for converting Me to SAMe. After that I may tweak the amounts of energy support.
    BTW, I still get queasiness sometimes from my supplements, even without the sulfur ones.
     
  6. physicsstudent13

    physicsstudent13 Senior Member

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    by the way where can I find a naturpathic doctor or nurse practition in NY? some endocrinologists are licensed in anti-aging and may be helpful-I'm trying to find a doctor who takes Medicaid since I can't afford to buy the supplements.

    for years I had brain fog, sometimes past 1am I would be free of brain fog, maybe because of slow methylation or poor nutrient absorption? now I have mental clarity with NAC all day, I am taking it 3-6g day now. I also take phosphitadylcholine which seems to help prevent liver damage and NAFLD, but I already have NASH it seems. I may have NAC deficiency which manifests in liver damage, hair discoloration, lethargy and an absorption of cysteine problem.
    I also think I may have some malabsoprtion syndrome like coeliac disease which results in the NAC deficiency and low levels of vitamin D and calcium. the alpha GPC I'm not sure is needed, but some people say it really helps brain fog
    Pasteurization may destroy the cysteine in milk and yogurt so it helps to have undenatured whey protein shakes if you need more glutathione and cysteine

    I'm afraid that I am taking too many supplements and drugs which are causing toxicity and nausea
     
  7. Critterina

    Critterina Senior Member

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    Wow, I'm so glad that you are doing so much better. I have to look up all the acronyms to talk to you, but I understand your liver is/has been really suffering.
    Coeliac is really easy to test - why not? I mean, it's discipline, but that's all. And if you feel better, the discipline gets so much easier. You also should have an indicator of likelihood from 23andMe if you've done it.
    Thanks for the suggestion, but I can't use cow dairy. I have been moderately OK with raw goat milk, but it's expensive!
    I don't know about finding a naturopath in NY, but try Ben Lynch's website. I think he has links.
    It's great chatting with you, but we've really got off the topic of this thread. If you want to continue, let's email. I'll start it.
     
  8. Sea

    Sea Senior Member

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    Critterina likes this.
  9. Critterina

    Critterina Senior Member

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    Sea likes this.
  10. Johnmac

    Johnmac Senior Member

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    Yeah, I could really use a simple intro. It's taken me half a day to get through 7 of the 18 pages on this thread, and I still don't understand much.

    All I get is that this is really promising stuff, but that in its current form I may not live long enough to get a handle on it.


     
  11. physicsstudent13

    physicsstudent13 Senior Member

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    are the methyl b 12 and in addition methylfolate necessary to help sleep and sleep apnea? I can't afford to buy a lot and they sent me methylfolate insteat of methyl b12
    my vitamin B levels on blood test have been high so I don't think I have a b12 absorption problem
     
  12. howirecovered

    howirecovered Senior Member

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    try this: http://howirecovered.com/active-b12-therapy-faq/
     
    Sparrowhawk likes this.
  13. viggster

    viggster

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    Hello - I've spent the past two days reading hundreds of posts here and on the "better medicine" (formerly "wrong diagnosis") forum and wanted to thank Freddd and everyone else for all the hard work developing the active b12 protocol. Interesting to see how it meshes with Rich VanK's research. I think I have undiagnosed subacute combined degeneration alongside/in addition to/whatever classic ME/CFS. My neuro pointed out a high intensity streak in my cervical spine + I have many neuro symptoms + blood MCV of 98.7 + serum vitamin B around 400. Freddd- if you're listening, you've repeatedly mentioned that you have SCD symptoms that persist. I'm curious what those have been. Are you willing to share that here or with me privately? I've been to docs at Georgetown, Hopkins, Mayo, NIH - and none raised the possibility of a B12 deficiency. And only 1 seemed concerned about the spine lesion - the others called it an 'artifact'. Kind of mind blowing that, if this protocol helps me, I could've started it a year ago and been in a much better place. So it goes...
     
  14. bertiedog

    bertiedog Senior Member

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    I wonder if Fredd or somebody could comment on my post regarding the success I am having with Cynacobalamin. I will copy and paste it below in case that might be helpful.

    I started a methylation protocol several years ago but was unable to tolerate the sublingual MB12 and Folapro because of severe migraines. So Dr Myhill suggested I try injecting daily 0.1 ml of MB12 and I have been doing this for nearly a year and have also taken at least 400 mcg Folapro in addition to 3 Thorne’s Basic Nutrients which contain 250 methyltetradydrofolate and 250 Calcium Folinate plus 112 AdB12 and 112 mcg MB12. I have stayed on lots of other basic supplements too.

    I was disappointed in that I had no extra energy but a definite increase in migraines which tend to occur early mornings.

    Just by chance Dr Myhill suggested I try her Transdermal B12 spray at 5000 mcg each day. I thought this contained HydroxyB12 but it turns out its Cynacolbalamin.

    I stopped all MB12 apart from what is in the Basic Nutrient and just used the spray plus 400 Folapro etc. Within 5 days I noticed energy in my legs on a more consistent basis. Within 8 days I had purchased a Fitbit One tracker and I was doing over 5000 steps daily without any ill effects. And so it has continued. My legs are half the weight they were and energy is always there and last weekend on Days 13 and 14 I did over 7000 steps.

    It feels like a minor miracle because I have been unable to walk more than 20 minutes for over 13 years now whereas today I walked for 40 minutes with just rather stiff, tired legs at the end. I have had to cut my thyroid medication in half because of over stimulation. In fact the only downside has been my sleep which has been awful. I have also been able to drop a small bit of hydrocortisone from my daily steroid dose.


    Since cutting back on the thyroid meds things feel better and I have slept better but still a tendancy to wake after only an hour of being asleep but I do now go back to sleep with less thyroid meds.


    What I don’t understand is why am I doing so well on Cynacobalamin which I understand to be ineffective? For me its like rocket fuel!! After reading through lots of Fredd’s posts on the B12 thread I added 1000 mcg sublingual MB12 today but don’t notice any difference but will continue to try and raise this to more than the 1000 mcg I took today

    Could Fredd or anybody else please explain why it has been so effective for me. I have cut back to 3000 mcg of the TD spray daily the past few days without any ill effects.

    I am still not keen on raising the Folapro above the 400 mcg plus the folates in the BN because of the tendency to severe migraines when combined with the B12. In fact the morning bad headaches/migraines are the only things not to have improved yet. I am very hopeful that my hair might even grow back!

    Thanks Pam
     
  15. Sea

    Sea Senior Member

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    Hi viggster, welcome to the forum.

    If you want to get a member's attention tag them like this viggster or to send them a private message click on their avatar and choose "start a private conversation"
     
  16. Sea

    Sea Senior Member

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    I'm so glad to hear that you have found something useful Bertiedog.

    The problems with cyanocobalamin for many people are
    1. They are unable to convert it to the active forms
    2. It comes with a molecule of cyanide which has to be processed by your detox system. This is a real issue for a detox system that is genetically inefficient or already overloaded by illness

    Obviously you don't have any problems with converting cyanocobalamin to the active forms. I don't really know how to tell if the detox side is an issue but I would guess there would be indications if you weren't able to tolerate it.

    Usually Hydroxocobalamin is recommended if Methylcobalamin can't be tolerated and that works well as long as people can convert it properly. Hydroxocobalamin is easier on the detox system than cyanocobalamin.

    I am not aware of any reason why cyanocobalamin would work well when hydroxocobalamin does not but my doctor says he has people who do better on it than on any of the other forms.
     
  17. Freddd

    Freddd Senior Member

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    Hi Viggster,

    Sure, I'm back from the hills and no longer incommunicado. Sub Acute Combined Degeneration (so I use SACD, I don't know what is technically correct). SACD has spinal and brain demyelinations. The differences between SACD and MS is that MS has a higher body level of b12s but a low CSF level of b12s. MS tends to be one sided, SACD tends to be bilateral. Distinguishing SACD from peripheral nervous system problems can be difficult. There can be loss of reflexes, loss of vibration sense in feet, "brisk reflexes", mood changes, personality changes, there are CNS responses to 50mg 5-star mixed MeCbl and AdoCbl single sublingual dose trial after all obvious body responses have faded from increased b12 doses. One way to tell is of pains and paresthersias that go down the whole dermatome. That places the demyelination in the spine. So I have pain and paresthesias all the way down the C3 dermatome and adjoining C4-C5. I have normal sensation in the skin of my feet sometimes but lack feeling of the muscles and they vary between pain and numb. When one can't feel where ones legs are and can't walk, it is wheelchair time. Below is the symptoms list responding to CNS penetrating doses of b12.

    These symptoms are what responded very well to CNS penetrating doses of MeCbl either as 50mg sublingual single 4-5 hour dose or 4 x 7.5mg or 3 x 10mg or for some 2 x 15mg subcutaneous MeCbl injections. Metafolin in some way enhances retention of AdoCbl and MeCbl with excretion visibly decreased. A sublingual dose of 1-2 tablets each hour added for 12 hours appears to generate substantial CNS penetration as well.



    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


    Elevated CSF Hcy
    Low CSF cobalamin
    limbs feel stiff
    Drowsy


    CNS penetrating dose MeCbl – AdoCbl
    dimmed vision - usually not noticed going into it because change can be very slow or present for life
    Clumsiness


    CNS penetrating dose MeCbl – AdoCbl - Metafolin


    Slow to adapt to night vision


    CNS penetrating dose MeCbl – AdoCbl – Metafolin – LCF


    Difficulty in word finding



    CNS penetrating dose MeCbl – AdoCbl – Metafolin – Omega-3 oils


    Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
    demyelinated areas on nerves
    subacute combined degeneration
    axonal degeneration of spinal cord
    unsteadiness of gait
    ataxic gait, particularly in dark
    positive Romberg
    positive Lhermittes
    Loss of motor control over some or all of toes
    Loss of motor control over part or all of feet
    Loss of sense of joint position
    sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
    sudden "ice pick" pain
    decreased reflexes
    brisk reflexes
    Foot Drop
    tripping over toes
    injuring toes catching top of toes on floor
    general feeling of weakness


    These are for the most part the distinguishing symptoms from peripheral neuropathies. SACD can end in diaphragm paralysis and heart failure if not effectively treated. My experience is that it is either getting better or worse but can reach an equilibrium wherein the rate of healing matches the rate of deterioration. Where that occurs depends upon how much recovery of function a person can have..
     
  18. viggster

    viggster

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    Freddd - Thanks much for all of the info. For the first time in a long time, I have hope that I can recover. I got sick 16 months ago and thought I had MS, maybe even ALS. But no diagnosis. I have positive Rhomberg sign, semi-positive Babinsky sign, 'brisk' reflexes, C2-C3 spinal lesion on MRI (but it's not an MS lesion), memory problems, etc. A lot of stuff that sounds like B12 deficiency. I've also lost 20-30 pounds of muscle from all over. I'm 6' and was down to about 150 lbs before gaining a bit back recently.

    I started the active protocol with mB12 5 days ago and total added 3mg aB12, which has given me a ton of jittery energy. It's not all the way pleasant, but I guess I will take that as a good sign.

    I am so bummed I did not get to this protocol a year ago - I feel like I've lost a lot of physical and mental capacity in the past year. But here's hoping I can get it back. Your story is an inspiration.
     
  19. viggster

    viggster

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    Oh, I also meant to mention I have a droopy right eye lid and vision problems with my right eye. It's hard to focus and I had one test that suggested brainstem lesions. Let's hope those can heal as well. I guess I will have to work up to the CNS-penetrating doses in a few weeks.
     
  20. Freddd

    Freddd Senior Member

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    Hi Viggster,

    Basics, like omega3 oils, lecithin, zinc, magnesium and all the usual vitamins are needed for possibility of getting neurological healing from my experience. L-carnitine fumarate can help a lot for some people in replacing muscle. I was unable to focus both eyes on and off for months before starting the MeCbl. That cleared up pretty quickly for me. Some things took years. Good luck.
     

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