1. Patients launch a $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: In Free Fall Through the Looking Glass
Jody Smith continues to try to put into words the horror of the altered state that hobbles the brains of those with ME/CFS...
Discuss the article on the Forums.

Mitochondrial Deficiencies

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Terri, Dec 26, 2009.

  1. Terri

    Terri Guest

    I have only recently discovered that I have CFS (after 14 years of mis-diagnosis) so I am new to all the different treatments and myriad of theories surrounding this illness. I am in the process of putting together a plan for myself of different tests and or treatments I want to try but of course would prefer (because of the financial end) not to reinvent the wheel. I do understand that not everything works for everyone but it seems to me that the members here have a lot of good experience and knowledge.

    One treatment I have looked at is testing for and addressing Mitochondrial deficiencies. I read an article about this here:

    http://www.drmyhill.co.uk/article.cfm?id=381

    Has anyone taken this test or tried this recommended treatment? What are your thoughts on this theory being a component of CFS?

    Thanks!

    Terri
  2. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    4
    mountains of north carolina
  3. Tony

    Tony Still working on it all..

    Messages:
    359
    Likes:
    38
    Melbourne, Australia
    Hi Terri,

    My guess is that you've likely worked out how to pace your life. I think Dr Myhill makes some good points.
    Another take on ME/CFS is here by Prof De Meirleir who I've seen. I think they would agree on most things, like healing the gut as a priority for most of us.

    Cheers
    Tony
  4. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Terri.

    In my opinion, there is no question that there is mito dysfunction in CFS. The evidence for this is very strong. I have seen the results of quite a few mito tests from Dr. John McLaren Howard's lab, and am also familiar with the paper that was presented on this work at the IACFS/ME conference last March. There is lots of other evidence that supports this as well.

    In my hypothesis, the original cause of the mito dysfunction in CFS is glutathione depletion, which is linked to a chronic partial block in the methylation cycle. This root cause leads to a number of other issues that are observed in this testing, including toxins binding to enzymes, translocator proteins and DNA, buildup of lactic acid, and abnormalities in levels of calcium, magnesium and zinc.

    Some benefits have been reported from supplementing with nutrients known to be needed by the mitochondria and also known to be low in CFS.
    However, in my opinion, in order to restore the mitochondria to normal operation, as well as to correct the other abnormalities in CFS, it is necessary to address the partial block in the methylation cycle, which will allow glutathione to come back up to normal.

    The reason for the low levels of some of the mito nutrients, such as coenzyme Q-10 and carnitine, for examples, is that methylation is required in their synthesis, and the methylation cycle is partially blocked.

    Dr. Myhill has included support for the methylation cycle in her overall protocol, and it is discussed on her website.

    In my opinion, it is best to get the Vitamin Diagnostics, Inc. methylation pathways panel run, and if a partial methylation cycle block is found, the person, together with their physician should consider the Simplified Treatment Approach for lifting the partial methylation cycle block. I have described it on this forum, and Dr. Myhill has a similar protocol on her website.

    The Vitamin Diagnostics lab is in the process of moving to a different building, so the methylation pathways panel will not be available again until about the end of January.

    Best regards,

    Rich
  5. Terri

    Terri Guest

    Rich,

    Thanks for your reply. I'm feeling a bit overwhelmed with all this info. I gave up on doctors and treatments a few years ago but am going to my doctor next week to talk about looking at doing some tests and since money is obviously an issue am trying to narrow it down a bit, I want to start with the most logical first. You said you described the Simplified Treatment Approach on this forum. Can you direct me there?

    Terri
  6. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, Terri.

    Sorry to be so slow to respond to your request. There are so many threads that I have difficulty keeping up with all of them.

    Here's the revised protocol for the Simplified Treatment Approach. I recommend getting the Vitamin Diagnostics methylation pathways panel run before trying this protocol, to see if it is likely to help, and to give baseline values for gauging progress on the treatment later. Contact info for the panel is also pasted below. It will be available again in the next few weeks. The lab has been involved in moving, but is almost back up on line again.

    I have no financial connection to this lab or to these supplements.

    Best regards,

    Rich



    April 18, 2009


    SIMPLIFIED TREATMENT APPROACH
    FOR LIFTING THE METHYLATION CYCLE BLOCK
    IN CHRONIC FATIGUE SYNDROME (Revised)

    (Extracted from the full treatment program
    developed by Amy Yasko, Ph.D., N.D.
    which is used primarily in treating autism [1])

    SUPPLEMENTS

    1. FolaPro [2]: tablet (200mcg) daily
    2. Actifolate [3]: tablet daily
    3. General Vitamin Neurological Health Formula [4]: start with tablet and work up dosage as tolerated to 2 tablets daily
    4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
    5. Activated B12 Guard [6]: 1 sublingual lozenge daily

    All these supplements can be obtained from http://www.holisticheal.com, or all but the third one can be obtained from other sources.
    The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
    These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
    GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
    Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


    [1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
    [2] FolaPro is a registered trademark of Metagenics, Inc.
    [3] Actifolate is a registered trademark of Metagenics, Inc.
    [4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
    [5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
    [6] Activated B12 Guard is a registered trademark of Perque LLC.




    Methylation Pathways Panel

    This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

    The panel costs $300 and requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on your clinician’s letterhead.


    Available from:

    Vitamin Diagnostics, Inc.
    540 Bordentown Avenue
    South Amboy, NJ 08879
    USA
    Phone:+1 (732) 721-1234


    Lab Director: Tapan Audhya, Ph.D.
    (usually at the lab on Tues. and Wed. from 1 to 3 p.m., Eastern time)

    Dr. Audhya is willing to help clinicians with interpretation of the panel by phone.
  7. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Rich,

    I notice that you're no longer recommending Intrinsi B12/Folate, but instead using Actifolate.

    Should the Intrinsi B12 be discontinued/eliminated?

    Thanks.
  8. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    There is another long thread going on about mitochondrial disease and cfs if you look in the general research section for the mito thread....might want to take this one over to that one. ~FernRhizome
  9. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    735
    Hi, gracenote.

    Yes. Metagenics changed the formulation of Intrinsi/B12/folate without changing its name. It no longer contains folinic acid. I think folinic acid is an important part of the protocol, because it helps to support other folate functions in addition to the methylation cycle, until the folate metabolism is restored to normal. For example, it helps to make purines and thymidine, which support synthesis of DNA and RNA for new cells. The protocol would probably work for a lot of people using FolaPro as the only
    folate, but I think that keeping folinic in it is helpful. I could have gone to straight folinic acid, as is used in the DAN! treatment for autism, but I decided to go with Actifolate, because it has the same mix of folates that were formerly in Intrinsi/B12/folate, and that's the mix we used in the clinical study. The clinical study is the best evidence we have for the benefit of this treatment. So that's the whole story!

    Best regards,

    Rich

See more popular forum discussions.

Share This Page