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!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

B-12 - The Hidden Story

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Cort, Jul 26, 2009.

  1. Hysterical Woman

    Hysterical Woman Senior Member

    Messages:
    855
    Likes:
    6
    East Coast
    Hi Freddd,

    Thanks for your input, I appreciate it. I find it easier to read out of a book than articles on the internet even tho I know that the ones in the book can be outdated. But I can read the book with hopefully so good background information while lying down and rereading if I have to. Reading off a monitor frequently causes me problems, I am sure others can relate to this. I am looking forward to reading the book and then reading more of what you have written.

    Take care,

    Maxine
     
  2. juniemarie

    juniemarie Senior Member

    Messages:
    301
    Likes:
    82
    Albuquerque
    Sorry folks, this was a reply to a question posted about finding more info on this forum as to who is on this protocol and how many have had good luck or success with it. I dont even see the question now, so I dont know what happened???????
     
  3. winston

    winston

    Messages:
    79
    Likes:
    0
    Central California
    Hi juniemarie, I know what you are looking for I am too. I have been on and off this protocol for four months and I always need some encouragement from others who are on the protocol and doing well. I wish their was a section where people could post their improvements and also how well they are doing and at what dose.

    Lena
     
  4. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    917
    Salt Lake City
    Hi Juniemarie,

    I remember that question some while back. I don't remember who made it but it was probably a couple of hundred posts back. There has been a lot of activity since. How was your success to date? Mine is great.
     
  5. juniemarie

    juniemarie Senior Member

    Messages:
    301
    Likes:
    82
    Albuquerque
    I clicked on reply at the bottom of the person post asking the question about results etc so why did my answer not show up next to the question?
     
  6. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    258

    Which protocol?

    (I can point you to some other discussion forums, and more info if you're doing Rich's one.)
     
  7. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    757
    Hi, Anne.

    I'm sorry to hear about your experience with toxoplasmosis, a sulfonomide drug, and pyrimethamine. It's true that pyrimethamine acts on the folate metabolism, by blocking DHFR (dihydrofolate reductase). According to Goodman & Gilman's, human DHFR is supposed to be much less sensitive than the DHFR in the pathogens. This drug was initially developed to treat malaria, but was found to be effective against toxoplasmosis as well. Trimethoprim, which is one of the two components of the antibiotic drug Bactrim (Septra) also acts by blocking DHFR, and the same rationale about the higher susceptibility of the DHFR in the pathogens compared to humans is used for it. However, I've heard from people who have had a history of Bactrim or Septra use before developing CFS, also.

    While these drugs may not cause problems for the folate systems in most people, they can cause problems for some. In fact, both Goodman & Gilman's and the PDR discuss adverse effects, and the PDR in particular mentions that people who have folate issues are particularly vulnerable. Here's a quotation from the PDR in the "Precautions" section for pyrimethamine: "Concurrent administration of folinic acid is strongly recommended when used for the treatment of toxoplasmosis in all patients."

    DHFR has two functions in the body. The main one is to convert dihydrofolate to tetrahydrofolate. This is part of the pathway for making thymidine, which is part of DNA. The other function of DHFR is to reduce folic acid to dihydrofolate. We are all genetically unique because each of us has our own set of polymorphisms in our genome. Some of these polymorphisms affect our responses to drugs. Research has shown that the DHFR enzyme activity for converting folic acid to dihydrofolate has a range of a factor of five among different people.

    If a person had inherited a slow version of DHFR, and if their diet was such that they were depending on the folic acid fortification of bread and grain products to supply their folate rather than getting enough reduced folate from natural food sources, and if their folate status was low because of low overall intake, and if they had dysbiosis such that the bacteria in their gut were not producing much folate for them, I think they might be particularly vulnerable to developing a significant folate deficiency when using this drug, especially if the dosage was high, and folinic acid (Leucovorin) was not taken together with it. Probably not all these factors would have to be present, but you get the idea.

    If folate became too depleted, it could shut down the methylation cycle, leading to CFS, in my hypothesis.

    These drugs are cleared from the body after a few weeks, so there shouldn't be permanent effects on the folate metabolism. I would think that the Simplified Treatment Approach would supply the necessary support to the folate metabolism in the case of a person who had suffered this reaction to the drug.

    I hope this is helpful.

    Rich
     
  8. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    757
    Hi, Brenda.

    The methylation pathways panel measures different parameters than Metametrix does. The former is the best for determining whether there is a partial methylation cycle block and/or glutathione depletion.

    Several of the Metametrix tests are also very helpful in CFS. I've used them a lot in analyzing various cases. For hair analysis, I prefer Doctor's Data lab. For urine organic acids, I have the most experience with Genova Diagnostics, but have also seen quite a few from Great Plains Lab and from Metametrix. All of them have some metabolites that are not found on the others, so it's difficult to say which is the best, but Amy Yasko uses the Genova Diagnostics Metabolic Analysis Profile, and since the treatment I suggested was extracted from her treatment, I've focused on that one, too.

    I've found that just about every case has some unique aspects. Initially, I had hoped that simply treating the methylation cycle block would take care of everything for every PWC, but I guess that was pretty naive, and it has not turned out to be the case. It's a very heterogeneous population. So I've ended up having to analyze a lot of aspects for some of the cases I've worked on. It's difficult to say what kind of testing each person needs without looking into the details of the case history and symptoms. When I consult on a case, I use a very detailed questionnaire, and based on the responses, I try to suggest the tests that I think would be most helpful for that particular case. Some people have already had a wide variety of tests run and don't need any more. They just need to have it all put together in order to figure out what happened to them and what is likely to help them. Others haven't had much relevant testing done. And of course, many people just can't afford much testing, and I think those cases are the hardest to figure out, because there isn't much data to go on.

    Rich
     
  9. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    258
    Rich,

    Super-helpful thank you. You're a star. :Retro smile:

    Interesting....even if it's just one factor in a chain of events.
    I wonder if they were relatively slow onset like me.

    I photocopied my hospital notes a few years back and it looks like I wasn't given folinic acid or Leucovorin. This was in 1984 so I'm not sure if those recommendations were in place then. Water under the bridge now anyway.

    ...I'll give it a go and report back then!

    Thanks again Rich for the extra insight. I'm really keen to get started with this.

    Best,
    Anne.
     
  10. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    917
    Salt Lake City
    Hi Rich,

    Trimethoprim, which is one of the two components of the antibiotic drug Bactrim (Septra) also acts by blocking DHFR, and the same rationale about the higher susceptibility of the DHFR in the pathogens compared to humans is used for it. However, I've heard from people who have had a history of Bactrim or Septra use before developing CFS, also.

    My daughter was on Septra for some while when she was young and having terrible problems. During the septra period she was having a vaiety of autistic characteristics. Intetresting. My wife also has folate problems so she got those from both sides.
     
  11. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    258
    Freddd,
    Very interesting with your daughter! (I don't know your whole story but one week soon I'll go back and read this whole thread!)
    I googled Bactrim and CFS. I found it recommended on one fairly well known CFS protocol.
    And Septra for Lyme? Bad news for some with folate issues, but how does the average person know they've got them?
     
  12. Freddd

    Freddd Senior Member

    Messages:
    4,546
    Likes:
    917
    Salt Lake City
    I would like to clarify something regarding the comparative testing of the 5 batches of methylb12 injectable I did. In ME, the differences came down to two things, the appearance of an acne type rash and the effect on my present "pivot point" symptoms, the numbness or recovery of feeling of my feet. None of the other symptoms/exsymptoms were affected in the least that I could perceive. So it is possible that we are dealing with only a relatively small decrease in effectiveness. A 5mg sc injection of the best 5 star mb12 doesn't prevent deterioration of my feet. It takes at least 7.5mg SC of the 5 star mb12 injectable to prevent deterioration and improve my feet. Nothing else appeared affected, even in some months on the less than 5 star mb12.
     
  13. brenda

    brenda Senior Member

    Messages:
    1,307
    Likes:
    656
    UK
    rich

    Thanks for the advise rich. Do you do private consultations? I am thinking of having my gut fixed first then moving on to the methylation cycle.
     
  14. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    757
    Hi, Brenda.

    Yes. For information about that, please email me off the forum, at richvank at aol dot com. I don't want to violate the forum rule against advertising.

    Best regards,

    Rich
     
  15. velha508

    velha508

    Messages:
    64
    Likes:
    4

    Hi Brenda,

    I have gut issues - which I am currently working on. I worked on my methylation cycle first because

    1) I could not think clearly prior to getting my methylation cycle going

    2) The methylation block is likely the reason for the gut issues in the first place - that is, contributes to the cascade of events that leads one to end up with dysbiosis (I think anyway). While some may think the opposite is true - once you are in a CFS state your body will not have the energy needed to heal and maintain a healthy gut if you have a methylation block.

    3) Getting it going helped and is helping with clearing up my gut issues. With little effort on my part my digestive system has started to come around on it's own after 4 months on Freddd's protocol.

    I read Myhill's whole approach about building a house from the ground up and I felt that the foundation was lifting the 'methylation block', not fixing my gut...

    Just something to consider, if you have the capability you might want to address both at the same time...
    velha
     
  16. Sunday

    Sunday Senior Member

    Messages:
    732
    Likes:
    31
    Hi Brenda, My own experience goes along with velha's; I've been on the methylation protocol for about 4 months. A few weeks ago, my constant nausea stopped. (Warning: it did get much worse on the B12s before it went away. This seems to be a pattern with my B12 reactions; a symptom gets worse for some weeks, then disappears or is reduced drastically. I still have the occasional bout of nausea, but it isn't constant. So nice.)

    Also, I have started digesting foods more normally, absorbing more of their nutrients. How do I know without extensive testing? Well, for the last year I lost weight no matter what I ate. Now I have started to gain it (never thought I'd be happy about that!). I'm also responding to foods and supplements more as I used to (e.g., I feel a boost of energy after eating protein; my mind clears when take a ginkgo biloba supplement), although I'm nowhere near back to my pre-CFS responses. And my elimination, which used to swing between diarrhea and constipation, is now easy and normal (that got more extreme, too, before it healed).


    My experience is that methylation IS the basis of at least a lot of my gut issues. I agree with velha, you might want to consider doing this as the basis of your gut healing, or along with other gut-healing stuff. Or at least just keep it in mind as you proceed.
     
  17. velha508

    velha508

    Messages:
    64
    Likes:
    4
    Sunday,

    I am so happy you shared the fact about the weight loss. I thought I was the only one. I started getting severly sick this past summer and I've had weight loss ever since. I've lost 20 lbs and on occasion held steady, but have never gained an ounce. This is completely unlike me, previously I could eat a crumb and gain weight!. I am constantly gorging myself because the unexplained weight loss terrifies me. It did start at exactly the same time my digestive issues did, so I am hopeful it will stop now that things are on the upswing. I've just noticed the change in my digestive system the past few weeks, I'm not sure if I'm gaining or not yet, but I think/hope I've stopped losing again...
    Velha
     
  18. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    757
    Hi, Velha, Sunday and the group.

    I'm very interested to learn that treating your methylation cycle led to improvement in gut function.

    I would really like to understand the cause and effect "tree" in the pathogenesis of CFS better.

    The best treatment sequence is not easy to determine even if one knows the sequence in the pathogenesis, because there can be interactions.

    For example, the development of a partial methylation cycle block may be what leads to the gut dysfunction in many cases. However, when the gut dysfunction has developed, it can lead to poor digestion and absorption of substances that are important to get the methylation cycle running again, such as amino acids. So even though the methylation cycle block may have led to the gut dysfunction, it may be necessary in some cases to work on the gut first. In other cases, the gut may still be working well enough to bring in enough of the essential nutrients, and in those cases, of which yours might be two, fixing the methylation first works well.

    Yesterday I had a conversation with Dr. Richard Kunin, the president of the Orthomolecular Health-Medicine Society, a person who has studied methylation issues for many years. He pointed out to me that when methylation goes down, one of the first things to suffer is the exocrine pancreas function, i.e. the part of the pancreas that normally produces digestive enzymes. I did a little literature searching, and he appears to be right. That might be one way (or maybe it's
    THE way) that a partial methylation cycle block leads to gut dysfunction. When you can't digest food for lack of digestive enzymes, I think the bacteria are going to respond by consuming the food and overgrowing. This may account for low chymotrypsin or pancreatic elastase in some of the stool tests from PWCs that I've seen. In the past, I've suspected that this might be due to low stomach acid production, which would lead to lack of a signal to excrete the digestive enzymes from the pancreas when the food moves into the duodenum. But maybe the problem really is with the pancreas itself, because of the methylation cycle block. Sorry to be thinking out loud here, but you've got me going!

    So it's very interesting to me that you have had this result.

    I do think, though, that some of the treatment failures with the methylation cycle treatment have been due to poor absorption of nutrients that are essential to methylation cycle operation. I'm particularly concerned in this regard about the people who report that they cannot maintain their weight, and are continuing to lose. I think this usually means problems in digestion and/or absorption, and in these cases, I think that the gut needs to be dealt with first, or the person will eventually need to be fed through a picc line, as has been used for some of those reporting to the "A New Day" forum.

    Rich

    P.S. I just read Velha's later post indicating that weight loss was a problem. Hmmmm.
     
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,098
    Likes:
    6,078
    Albuquerque
    Rich and others,

    Just an anecdotal report on my experiences on this subject. I have been doing the Simplified Protocol for a bit over two years with very noticeable improvement but still a good ways to go to find "health." Half way through the methylation work, I had the complete digestion and stool test from Genova and it did show a lot of digestion problems. With the help of a doc I went after this with herbals and other supplements and a subsequent test showed a lot of improvement (pathogen levels way down), but still problems. I also had gut PH of 8.1, so have been using betaine HCL with meals and also digestive enzymes.

    My new doc found problems with my pancreas also. Earlier lab tests had shown that I was severely low in vanadium and chromium and I had been supplementing them in the correct ratio, but this doc's testing showed that I was not able to utilize them. He found that this also linked in with being positive for XMRV (tested through direct resonance testing against a vial of the stuff). We are working with that.

    I have had both weight loss, regain, and reloss while on the Simplified Protocol. I now seem to be maintaining my weight.

    Sushi
     
  20. winston

    winston

    Messages:
    79
    Likes:
    0
    Central California
    Rich, just want to add I am on Freddd's B12 protocol for a short time, lots of nausea. I recently researched autoimmune atrophic gastritis and found it most common to develop in patients with Graves disease who have been treated with radioiodine. I had this treatment 18 years ago. I developed CFS after being treated for H-pylori 10 years ago and have suffered with CFS on & off since. No website talks about any treatment for this atrophic gastritis. What am I to do?

    Lena
     

See more popular forum discussions.

Share This Page