Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Help. MethylB12 and Glutathione answers needed

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Shannon, Dec 21, 2012.

  1. Shannon

    Shannon

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    I am stuck in a situation where I really need some advise and oppinions. I have a long medical history but let me sum it up by saying I suffered late stage Lyme disease and after 2.5 years of treatment, was left worse then I was going into it. I have had years full of horrible unsuccessful opiate detox (took 3 years of withdrawls to finally get it out of my system and I still have withdrawl symptoms years later) ive had numerous surgeries and have been put under anesthesia countless times. I Suffer on a daily basis and ive run out of almost all options . I only have Medicaid so my doctor and persciption options are limited..these being said I Really Really need sone advise on the below:
    A couple months ago I asked my neurologist (treating me for my fibromyalgia) to write me a script for Glutathione & ATP injections as I remeber them helping duribg Lyme treatment). The daily injections have done wonders for my fatigue, and within a few weeks I found out I was heterozygous A1298c for MTHFR. When I found this new information out I was excited thinking my body would finally be able to detox and I'd have a chance of living a semi normal life, only to find out I can not find a knowlegable doctor or afford one. Luckily my neurologist is open to trying me on supplements and I came up with a MethylB12 (Methylcobalamin) injection reagamine. My first plan was to keep the Glutathione & ATP injections on board, but at half the dose and only on the days I dont take B12 (without the Glutathione/ATP im a walking zombie)..
    I need to know:
    1st: is it necessary or even safe to continue glutathione & ATP when starting a MethylB12 regamine??

    2nd: I am getting a script for Methylcobalamin injections 25mg/1ml... I was originally came to the conclusion I would take a full 1ml (25Mg) every 3 days then every 2 days to titrate myself up, but now im wondering if that is to much. I plan in eventually starting Metanx and want to establish a good B12 level bit when it comes to a good protocol I am torn with what to do..I need personal experience and advise on wheter it would be better to take a lesser dose of the B12 daily (.3ml), or to take a highet dose less frequently (.5ml-1ml. every 3 days)????

    So anyone familiar with some standard dosage and frequency protocols for MethylB12 injections pleasr please share them with me.
    Also any thoughts if I should keep glutathione on board but in lesser amounts??
    Thank you very much
     
  2. caledonia

    caledonia

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    The glutathione should be causing detox. When the toxins come out you will feel worse.

    The withdrawal symptoms from opiates are probably from pain receptors not being replaced due to poor methylation. Restarting methylation should help.

    The anesthetics would be another toxin that would deplete glutathione.

    When you do the methylcobalamin and Metanx, you will restart methylation and production of glutathione. I don't know if too much glutathione is a problem. I'm guessing it probably is, because the body likes things to be in balance, not too high or too low.

    Metanx is a super high dose of methylfolate. If you don't get enough B12 (they work together to create methyl groups), then you will create a situation called methyl trapping where methylation will stop. This is not what you want to do.

    If it was me, (and I'm very sensitive to medicines and supplements so you may be different), I would drop the idea of high dose injections and prescription medicines and check out Rich Van Konynenburg's simplified methylation protocol. It uses much lower doses and many other co-factors.

    http://phoenixrising.me/treating-cf...e-mecfs-glutathione-and-the-methylation-cycle

    You don't know if A1298C is your only methylation mutation. People here are getting tested for 30 methylation SNPs. They all interact with each other. This is a good summary of the relevant SNPs and how to treat for them: http://www.heartfixer.com/AMRI-Nutrigenomics.htm. However, the protocol is much more complex and expensive that Rich's (it's Amy Yasko's protocol).

    Rich's simplified protocol is a simplification of Yasko - it takes most SNPs into account and is a cost effective way of getting started. If you don't tolerate the protocol, or it's not helping, then you can do further testing to see why and make adjustments.
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Shannon

    I would also recommend that you be very cautious with using such high doses of methyl B12 and methylfolate. Even .3 ml would be a very high dose for most of us (about 7.5 mg). Others have had trouble with doses like this because of the effect on the methylation cycle.

    Looking at the Metanx website, it has both a high dose of methylfolate and 2 mg of methyl B12--the methyl B12 taken by mouth would be mostly lost in the digestive process.

    I too would recommend starting with much lower doses and seeing how you do. If you get in trouble with a protocol like this, it isn't always easy to get out of trouble.

    As Caledonia suggested, take a look at the simplified protocol to get another perspective on this.

    Best,
    Sushi
     
  4. Shannon

    Shannon

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    As for the Mentax i planned on taking half but only once ive established a steady B12 regamine.. Im even more confused because a lot of Lyme information I read states 25mg/1ml every 3 days, while other MTHFR protocols state only .1ml-.5ml of the 25mg/1ml every 1-3 days. I plan on subQ injections because ive always had a difficult time having a very high tolerance to medication so injections seem to be the most effective.. the glutathione ive been doing daily subQ has been doing wonders for me... im wondering at this point if I just might feel better sticking to the glutathione & ATP injections daily as I know they make me feel better?
     
  5. adreno

    adreno PR activist

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    Start with low doses of sublingual methyl B12. If that goes well, add low doses of methylfolate and other co-factors. Increase doses gradually, until you start to improve. I am one of those persons who can confirm that taking high doses will only make you worse. Stay away from the Metanx, the dose is way too high.
     
  6. justy

    justy Senior Member

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    Hi Shannon, i havent tried the full protocols as i was worried about doing it alone, without a doctor to back me up. Instead i was prescribed methyl B12 Sub cutaneous injections by a uk M.E specialist. I was prescribed daily injections at what i thought was a fairly high dose (much lower than yours!) i still could not tolerate this and it led to symptoms of excitotoxicity after a short while. I doscovered that i needed to more than half the daily dose to 300mcg - that was still too much so i lowered it to 300mcg every other day. I was able to get up to 500mcg a day after nearly a year.

    Methyl B12 injections are the best treatment i have tried so far - but by no means a cure. I had Mitochondrail testing done through the Acumen lab in the UK which showed slow ATP/ADP coversion and recycling, low antioxidant status gene blockages on the MNSODase gene and poor nutritional status. B12 injections have particularly helped as an antioxidant cover.

    I know in Fredds protocol he says not to take Glutathione as well as B12, but i dont know enough about it to say why. Perhaps someone else can come along and explain.

    All the best, Justy .
     
  7. Lotus97

    Lotus97 Senior Member

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    Hi Shannon. I'm sorry to hear what you're going through. I also suffer from Lyme and I'm struggling with methylation because my body is toxic from the Lyme. Methylation can be especially difficult for people who have lots of toxins in their body either from metals, viruses, or some other illness. This from Dr. Neil Nathan you uses Rich's protocol on some of his CFS/Fibromyalgia patients:
    * * * *
    Q: Would the Methylation Protocol be of any benefit for individuals with Lyme disease? Would the vitamin B-12 and folic acid be good for it? My girlfriend has had Lyme disease for the past 7 years. She was diagnosed 5 years ago and has been on antibiotics for the past 4 years as of June 2011. Do you have any suggestions or directions regarding the continued use of antibiotics for the treatment of chronic Lyme disease? Any help would be much appreciated. She has been through hell and is better but not cured of the Lyme.

    A: We treat a large number of patients with Lyme disease, and we have found that most of them (as with patients chronically ill with virtually any condition) do not methylate properly. Many of them do respond to a methylation protocol, but again, I must warn you that most of our Lyme patients wrestle with problems of toxicity and are at high risk of reacting to the protocol, initially. So I would go VERY slowly and carefully, work with someone who understands this.
    * * * *
    Q: For someone with a diagnosis of Lyme pathogens, would you recommend treating the Lyme first or doing the Methylation Protocol first?

    A: Treat the Lyme first. If you try the methylation protocol first, you will release toxins that the individual cannot handle and you have a high risk of making them worse.
    * * * *
    Q: My Lyme doctor put me on the Methylation Protocol (I have had chronic fatigue for more than 10 years)… It made me feel like I was on speed. Any insights on this
    A: Yes. It was too strong for you. You may need to cut it way back for it to be of benefit.
    * * * *
    Q: Rich Van Konynenburg wrote several years ago in the ProHealth ME/CFS/FM message board that he had a hypothesis that “Lyme disease is one route of entry into CFS for people who are genetically susceptible.” What is your current thinking on whether ME/CFS and Lyme may sometimes be linked or otherwise associated?

    A: As we continue to study this, it becomes clear that many patients who have been diagnosed with ME/CFS have Lyme disease that hadn't been looked for or diagnosed. The numbers are much higher than we had thought, so that some Lyme specialists think most patients with "CFS" actually have Lyme. I would not take it that far, but I would agree that we should check all CFS patients for Lyme disease. We don't want to realize three years down the road that we missed a treatment component.
    * * * *
    I started a thread for people with Lyme who are also following a methylation protocol or considering trying one. I hope you'll have a chance to share your experiences with methylation even if you decide to discontinue methylation.
    http://forums.phoenixrising.me/inde...glutathione-depletion-rich-vanks-posts.21563/

    You might want to try hydroxocobalamin instead of methylcobalamin because that can be a gentler way to raise the block in the methylation cycle for people who are especially weak and/or toxic. Most people are able to convert hydroxocobalamin into methylcobalamin and adenosylcobalamin. And I agree with what other people said about methylfolate. Maybe you could try taking just hydroxocobalamin and if you're able to tolerate that then after at least a few weeks add a small amount of folinic acid and then maybe methylfolate a few weeks after that. Rich recommends 2000 mcg of hydroxocobalamin, but you might want to start at a lower dose. He also recommends 200 mcg folinic acid and 200 mcg of methylfolate, but you might want to start at lower doses with those too. If you feel worse after taking any of these either lower the dose or stop altogether. You might find that you are only able to tolerate b12 and not folate. Everyone is different. Adenosylcobalamin/dibencozide/adb12 is useful for ATP, but some people have expressed concern over taking too much adb12 without methylcobalamin. If you're taking hydroxocobalamin though your body will hopefully be making enough adenosylcobalamin.

    Aside from taking Glutathione directly, there are many supplements to increase Glutathione and ATP. Increasing ATP can also help increase Glutathione. Supplements useful for boosting ATP and Glutathione include NAC/L-Cysteine, B2, Alpha Lipoic Acid (ALA)/R-Lipoic Acid, L-Carnitine Fumarate, Acetyl-L-Carnitine, Coenzyme Q10/Ubiquinol, Magnesium, Malic Acid, Magnesium Malate, Creatine, Citrulline Malate, Milk Thistle, Molybdenum, Selenium, Methionine, TMG, SAMe, Vitamin C, Fisetin, D-Ribose.
     
  8. juniemarie

    juniemarie Senior Member

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    Rich did not exactly agree with Dr Nathan's thoughts on when to do methylation and when to treat lyme. He said that he thought tackling the methylation problem first might improve the outcome of the persons response to lyme treatment.
    Dr Burrascano a ILADS top lyme doc has also mentioned this idea in recent talks.
     
  9. Freddd

    Freddd Senior Member

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    HOW TO INDUCE SUBACUTE COMBINED DEGENERATION and enlarged MCV in humans in 3 months or less.



    Causing SCD and macrocytic anemia was NEVER our intention, our intention was to induce health benefits from glutathione or precursors as claimed these days amongst certain practitioners. This is just how it turned out, 180 degrees from what we expected.



    Individual results will vary but in an N=10 trial, 100% of subjects had the results to varying degrees, perhaps as they used several different precursor combos or infusions. The subjects were all successful with adb12, mb12 and Metafolin. Those not in this group that had never relieved the deficiency symptoms claimed pain relief from the glutathione as their nerves were damaged further into numbness.

    Method 1 - feed subjects 1 gram of l-glutamine and 600mg of time release NAC twice a day for duration (or frequent glutathione infusions, or NAC or whey in some). In 3 hours after first dose most of available b12 in the body will be flushed out in the urine. Then within the next few hours methylfolate is expelled from the cells via the "methyl trap". Widespread body, muscle and joint, inflammation and pain start within hours and gets worse by the day. This is responsive to NSAIDS generally. Folate deficiency symptoms appear the first day, mb12 deficiency symptoms in several days and adb12 deficiency symptoms - 3 months or so.

    Over the next days and weeks, CPR heads for the roof. Hypersensitivity of all sorts starts, MCS, hyper-immune response, hypersensitivity in nerves, etc. In 3 days angular cheilitis starts up in those who are prone to it. In 2 more days IBS starts. At about the same time acne type lesions start up on scalp and face and often infected follicles in other body areas. Oral lesions usually follow. By six weeks centrally mediated numbness and pain of feet and legs, hands, arms, shoulders etc are all spreading and worsening.

    Dr Jeckyl leaves the house and is replaced with Mr Hyde for the duration. Sleep disorders increase. In 3 months macrocytosis is obvious, MCV > 100. MS will be dramatically worsened. If the person is also extremely low on l-carnitine and/or adb12 Parkinson's like symptoms may worsen explosively. Then if l-carnitine is given the subject may go absolutely nuts and a walkthrough of the extreme FFF characteristics of the limbic system will be demonstrated in usually the same order each time, dependent upon rising or falling l-carnitine level.

    Reversal, if SCD is not allowed to go too far is multiple 15mg doses of Metafolin (Deplin) and three 50mg mb12 doses or 10mg SC injections of SUITABLE 5 star mecbl until healed for at least a year, and of adcbl the first few days. On day 3 need for potassium will increase by 2000-3000mg to avoid dramatic sudden onset of Hypokalemia symptoms when backlogged healing starts up. Also on day 3 Metafolin dosage needs increase. In about a month inflammation will be largely gone if all cofactors are present that are needed, CRP <=1.0, multitudes of pains will be fading. MCV corrects when folate deficiency doesn’t exist for several months. Maintaining folate sufficiency for 3 months straight can be extremely difficult for those with paradoxical folate deficiency. Only the remyelization take about 9 months to correct to the extent that it can but trails on for years as it is an ongoing equilibrium that is either getting better or worse.



     
  10. Lotus97

    Lotus97 Senior Member

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    Yeah, I tend to agree with that. Although methylation can be hard on people who are especially weak or toxic, treating Lyme can be much more damaging on a person's body due both to the toxins released through die-off/herxing/Herxheimer Effect as well as the fact that the probiotics in a person's body will be killed from treatment which further weakens the body.
     
  11. Lotus97

    Lotus97 Senior Member

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    Freddd
    Is this from a study?
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Freddd, I am not sure what you are quoting here and what is from you.

    I'd also be interested in seeing reference to a published study concerning this. As many will remember Rich's ideas on this differed and it is good to weigh both opinions, opinions from your doctor and your own research and experience, before making personal treatment decisions.

    Sushi
     
    Adster, Lotus97 and Dreambirdie like this.
  13. Adster

    Adster Senior Member

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    My understanding here is that freddd is referring to his observations of people he has guided through treatment personally rather than from a formal study.
     
  14. Lotus97

    Lotus97 Senior Member

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    The phraseology he uses is very misleading and suggests he is quoting an actual study.
     
  15. Adster

    Adster Senior Member

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    Maybe I'm wrong, and I apologise if that is the case.
     
  16. Lotus97

    Lotus97 Senior Member

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    These dosages are enough to kill some people. This is a conversation between Rich and another member:
    ------------------
    Adreno
    When I take 5mg methylcobalamin it causes me tachycardia. I then need massive amounts of potassium to calm down my heart rate (about 10 grams). Why?

    I also take 3 x 800mg methylfolate. When I take it with hydroxycobalamin, I can control my POTS/tachycardia with a steady dose of about 5 grams potassium daily. When I switch to methylcobalamin, my heart rate gets out of control and I need much more.

    I have heard the theory that there is a drop in potassium levels, caused by new cells being created. But come on, 10 grams!? Also, I do have doubts about this theory. What about other people who create lots of new cells, like people who just gave blood, people who had surgery, people who had chemotherapy, or athletes/bodybuilders? I have never heard of anyone needing to take 10 grams of potassium daily.

    Thank you for any comments.
    ----------------
    Rich
    Hi, Adreno.

    As you know, I have suggested a somewhat different approach to treating the methylation cycle partial block than Freddd has suggested.

    When high dosages of methylfolate and methyl B12 are taken together, the cells are no longer able to control the rate of the methylation cycle, and it becomes overdriven.

    One result of this is a rapid buildup of folates in the cells, because of the rapid production of tetrahydrofolate by the methionine synthase reaction.

    Tetrahydrofolate is readily converted to the forms of folate needed to support DNA and RNA synthesis, and this releases cells from a block at the S phase of the cell cycle.

    They rapidly start dividing, and this produces a strong demand for potassium.

    As Alex has noted, it has been shown that the intracellular potassium levels are low in CFS (likely because of an ATP deficit at the membrane ion pumps, due to mito dysfunction, in turn due to primarily to glutathione depletion), so there is no reserve there.

    The result is that the plasma level of potassium drops, and that accounts for the tachycardia.

    It is notable that hydroxo B12 does not have as severe an effect in your case as does methyl B12. That's because the cells have control of the rate of conversion of hydroxo to methyl B12, and thus have more control of the rate of the methylation cycle.

    Note that another effect of overdriving the methylation cycle is a further drop in glutathione, as less homocysteine is available to go toward cysteine synthesis.

    There seem to be more and more people who are exhibiting effects of overdriving the methylation cycle from taking high dosages of methylfolate and methyl B12 together. I do not recommend this approach.

    My suggestion would be to lower the dosage of methylfolate to something nearer the folate RDA (400 to 800 micrograms) and try hydroxo B12 instead of methyl B12, perhaps starting at 2 milligrams sublingually and working up from there if needed.

    As always, I recommend working with a physician while on this type of protocol.

    Best regards,

    Rich
     

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