1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Simplified Methylation Protocol Revised as of Today

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by richvank, Mar 30, 2011.

  1. leela

    leela Slow But Hopeful

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    No, I haven't. I'm not anywhere near as methodical as you, and I'm taking a whole bunch of other stuff. All I know for sure is my vastly improved sleep was directly and immediately connectable to the start of my modified methylation protocol.
     
  2. Freddd

    Freddd Senior Member

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    Hi Leela,

    I started to sleep much better after starting first mb12 and then Metafolin which restored dreaming sleep. B12 defiency is associated with sleep disorders of many kinds. Mb12 taken in the morning makes it more likely that the melatonin will be generated in the evening. My sleep went up from a disturbed 4-5 hours nightly plus narcolepsy to 7-8 hours of normal restorative sleep over the first couple of months. B12 deficiency in children is also associated with disturbed sleep patterns including night terrors. Good luck and good sleeping.
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Hey Rich....

    Where has your research paper on methylation disappeared to?


    The link now gives me an error message: "file directory not found."

    Can you provide the new link? thanks.
     
  4. Rockt

    Rockt Senior Member

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    Thanks Anne.

    I think I'm going to try it because i can buy it locally and NOT have to order it.
     
  5. richvank

    richvank Senior Member

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    Hi, Dreambirdie.

    I guess Cort must be modifying his site again. Probably the best place to find my papers right now is in the files section of the Yahoo cfs_yasko group's website:
    http://health.groups.yahoo.com/group/CFS_Yasko/ If all else fails, email me at richvank@aol.com, and I will send you whatever you want as an attachment.

    Best regards,

    Rich
     
  6. Dreambirdie

    Dreambirdie work in progress

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    Hi Rich--

    I emailed you. Please do send me a link. Thanks.
     
  7. Rockt

    Rockt Senior Member

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    Anne, I'm a bit confused, (not very difficult for me :) ). I went to buy the AOR B-complex today and the first thing I noticed was the folic acid. I thought we were avoiding folic acid? Are you saying the form of folic acid in the AOR B-complex is OK?

    Please advise if possible.

    Thanks.
     
  8. Freddd

    Freddd Senior Member

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    Hi Rockt,

    It is the ADVANCED B-Complex that says "folic acid (5-Methyltetrahydrofolate)"
    http://www.aor.ca/html/products.php?id=8

    This is the right one regardless of their peculiar use of folic a and methylfolate. This is bcause "folic acid" and "folate" has become synonymous in many person's minds and causes incorrect thinking via semantic error.
     
  9. leela

    leela Slow But Hopeful

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    ROckt,

    People seem to use folic, folinic and folate interchangeably. It's really confusing.
    The important point is that the naturally occurring form of folic acid, the folate 5-Methyltetrahydrofolate is the kind of folate you do want during this protocol.
    Some may benefit from folinic acid as well, and most are now avoiding folic acid as plain folic acid which is not biologically active as far as I understand.

    Hope this helps.

    oops. cross-posted with freddd :)
     
  10. Rockt

    Rockt Senior Member

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    Thanks Fred and leela.

    Should I take 3/day as AOR recommend?
     
  11. leela

    leela Slow But Hopeful

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    Hi Rockt,

    I can't say what you should do, but I just take one AOR for now.

    ~~~~~~~~~~~

    Also, I forgot to mention in my "update" that I decided to forego the Phosphatydil Serine in favor of Sunflower lecithin, but unfortunately that tested as a NO from both naturopaths. What tested YES from both was vegan DHA--for those who are interested I am using the DEVA brand.
     
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Rich,

    As I believe you know, I am now a patient of Dr. Kenny De Meirleir in Brussels. After he prescribed extensive testing and analyzed the results, he is adding in a number of medications and supplements, as well as the continuation of GcMAF.

    My question is this: He has prescribed hydrox B12 injections (10 mg, 3 x per week, or smaller injections daily). He also found rather extreme overgrowth of the anaerobic bacteria Prevotella in the gut, dysbiosis and other gut imbalances that would be expected.

    His prescription involves three months of 8 days each of targeted antibiotics (two different ones), followed by high doses of VSL-3 the rest of each month. His concern is to try to normalize the gut while at the same time enhancing the immune system with GcMAF and daily injections of Nexavir.

    I stopped the methylation supplements when starting GcMAF so as not to confuse responses and also to not have to deal with die-off from two different protocols. Now I will be adding in high doses of hydrox B12 and will eventually want to add back in 5-Methyltetrahydrofolate.

    But in the past, I was was not able to handle high doses of hydrox B12 together with 5-Methyltetrahydrofolate. (too much detox) Under De Meirleir's protocol I will be dealing with some of the toxins aggressively, so perhaps my detox reaction upon adding 5-Methyltetrahydrofolate will not be so intense.

    I wonder if you could you offer any advice as to at what point it might be "safe" to add in 5-Methyltetrahydrofolate--of course from the theorectical stance of a scientist! My thought is that I might try it (at very low levels) when I feel stable on the protocol as prescribed.

    My tests showed a lot of immune irregularities, (though very little inflammation--perhaps due to LDN), neurotoxins, diastolic dysfunction, etc. so I want to be very careful about not precipitating a tailspin--while at the same time I know I will need to bring up my methylation function to help deal with a retrovirus and other abnormalities.

    Tough question, I know! But I would really appreciate any input you could give.

    Thanks,
    Sushi
     
  13. richvank

    richvank Senior Member

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    Hi, Sushi.

    My advice is to hold off on adding the 5-methylTHF. Here's why: With Dr. de Meirleir's treatment, I think you will already be getting it. It is made by some of the probiotic bacteria. I'm familiar with one case in which the person added probiotics to the simplified protocol and experienced a big reaction. Eventually, he figured out that the probiotics were effectively increasing his methylfolate dose. I also wonder whether Nexavir might contain some folate. I understand that it is a low molecular weight extract from animal liver. As such, I think it is plausible that it could contain some folate, but I've never seen a published analysis of it, so its sort of a "black box" to me.

    I had a discussion with Dr. de Meirleir about this at a Ratna Ling Working Group seminar a few years ago. As you probably know, he has for many years believed that the gut and its immune system are the central issue in the pathophysiology of ME/CFS. He does not believe that the methylation cycle block is fundamental. I think his view is that the problems start in the gut, and because of things that happen there, the various aspects of ME/CFS develop, including the problems with glutathione and the methylation cycle. The first time I met him, at the AACFS conference in Madison, WI in 2004, I mentioned glutathione to him and he said, "I use it!" As you noted, he also uses hydroxocobalamin. By including hydroxoB12, sometimes glutathione, probiotics and perhaps by including Nexavir, I suspect that he is implicitly doing methylation treatment as he deals with the gut and immune problems, which are his central focus. Interestingly, Amy Yasko, from whose full treatment program I extracted the simplified protocol, recommends dealing with gut issues before going on to do treatment for the methylation cycle!

    So it's starting to look to me as though the gut treatment and the methylation treatment are both important, and need to go more or less hand-in-hand, however this is done, in terms of the specifics of the treatments.

    I think you are in good hands. I'm following your updates. More power to you and to Dr. de Meirleir!

    Best regards,

    Rich
     
    Lotus97 likes this.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks so much Rich for your quick reply, :thumbsup:

    What you wrote is very encouraging and helpful. I had not considered the possibility that I might be getting 5-methylTHF with the other things that I am taking.

    The gut question is also very interesting in that I did not have any obvious gut symptoms yet I showed a 93% overgrowth of Prevotella (possibly missed in stool tests that are exposed to oxygen), almost no trace of "good" gut bacteria, high markers for dysbiosis, was positive on the H2S test, and showed fairly high levels of neurotoxins on a urine test.

    Another patient (who did have very marked digestive symptoms) was found by stomach biopsy to have both XMRV and high levels of HHV6 in the gut). Treatment so far has considerably reduced his digestive problems.

    I have been considering going back to nebulizing glutathione while I am injecting the high doses of hydrox B12, (in hopes of making glutathionylcobalamin), but I don't know if nebulized glutathione will "go systemic" enough to do this. Otherwise I might try a tiny dose of liposomal glutathione with hopes of doing the same. But will they meet at the same time and place and "marry?"

    Thanks again. I do feel "on track" with this protocol and have already found marked improvements with just the GcMAF.

    Best wishes,
    Sushi
     
  15. richvank

    richvank Senior Member

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    Hi, Sushi.

    I don't know. There are a lot of competing reactions for glutathione, and it would have to get into the bloodstream from the lungs. The epithelial lining fluid of the lungs is normally rich in glutathione, so the cells there may be set up to move glutathione into this fluid, rather than to absorb it and send it to the blood. It's hard to say how much of the glutathione would find the B12. It's true that if glutathione and B12 are mixed together in a nebulizer, they will react with each other rapidly.

    Best regards,

    Rich
     
  16. dannybex

    dannybex Senior Member

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    Sushi, that's interesting that you have Prevotella in your gut. That rang a bell for me...I pulled up a metametrix test from March 2010, where my levels were at 10.7, which I guess is in the 95% percentile. Also had similar levels (percentile-wise) of streptomyces and mycoplasma sp. -- but all the doc did was prescribe probiotics and s. boulardi. My lactobacillus and bifido were at good and decent levels respectively.

    I too don't have any obvious gastro symptoms -- just really poor digestion for years. But I wonder now...should I be treating these bugs with some sort of abx? Also, do you know if these bugs hide under biofilms...?

    Also found a parasite, but said "taxonomy unavailable", (meaning it's not a human parasite on their list) and that it does not 'indicate treatment'. This, from metametrix. How would they know if it needs treatment or not? oy...

    Very disappointed in my ex-doc.

    Sorry to go off topic.

    d.

    p.s. Just found this on Myhill's site: "Apparently prevotella, the bug shown by Kenny de Meirleir to be a major fermenter, is susceptible to bile acids. Increasing fats and oils in the diet will improve bile flow and my help flush out unwanted bacteria in the biliary tree." She recommends taking bile acids, if one has low levels.
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Dan,

    I moved my reply over here: http://forums.phoenixrising.me/show...-we-get-ME-CFS&p=181397&viewfull=1#post181397
     
  18. Rrrr

    Rrrr Senior Member

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    hi rich, thanks for yr thougths and to sushi for directing me to this thread (i have not been reading it. i have not been on the methylation protocol for about 2 yrs now, since i stopped it due to over-reacting to everything on it.)

    i am a kdm patient, but i'm not yet on the KDM gut protocol (i have not yet had my first 3-month follow up appt, where he'd tell me what to take besides gcmaf). so given that, rich, i wonder if i should add in the folates or if nexavir, which i am on, is covering that already...? i am also on 1 cc per day of b12 (hydrox) (5,000 mcg/ml).

    rrrr
     
  19. Rrrr

    Rrrr Senior Member

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    coffee enemas also increase bile flow, i think. and recently i added in coconut oil (1/2 tsp?) a few hours before my coffee enema, and that seems to increase the bile flow even more, getting more bile flowing when i do the enema itself. (ewwwww. gross! who is talking about enemas? that's gross!!!!!!)
     
  20. maryb

    maryb iherb code TAK122

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    Rrrr how do you tell if you have increased bile flow with the coconut oil?, its okay I can probably guess how the coffee enema works:)
     

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