1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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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...
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Am I “Allergic to Life”?

Discussion in 'Phoenix Rising Articles' started by Russell., Nov 4, 2013.

  1. caledonia

    caledonia

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    Cincinnati, OH, USA
    Right, you have to do both - avoid the toxin and do methylation supps, as they both affect methylation. This is the thing that a lot of people don't seem to get - you will likely have to do a total program addressing all aspects that affect methylation, not just taking methylation supps and thinking it will fix everything.

    You might get lucky and one aspect will be extremely helpful, but that doesn't occur for most people. So you have to do an overall assessment and treat all aspects:

    1. any toxins still going in - get rid of the source of those
    2. any ongoing infections - get rid of those
    3. gut problems - address those
    4. poorly operating methylation cycle - address that
    5. still have metals despite killing gut bugs and addressing methylation (both of which will detox metals) - do further metal detox
    6. you have a great deal of ongoing stress or past trauma still causing issues - address that
    7. nutritional deficiencies - test for and supplement for those

    I'm probably missing something, but you get the idea. All of these things affect methylation, therefore you have to do all of them to completely address methylation and get back in balance.
  2. jenbooks

    jenbooks Guest

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    It's not at all that simple, Caledonia. 'Nuff said
  3. Wayne

    Wayne Senior Member

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    Hi JanisB, and Jill Neimark,

    Thanks SO much for these excellent articles. I normally don't read much at a time, but felt "fairly captivated" as I read both of your articles back to back. Your articles reminded me of an experience I had several years ago, and which I posted about on the ProHealth board. Thought I'd paste my original post here, as it seems relevant to the discussion.

    Thanks again; double thumbs up! :thumbsup::thumbsup: --- Best, Wayne

    Originally Posted This on 5/31/07
    Last edited: Nov 8, 2013
  4. caledonia

    caledonia

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    @jenbooks I didn't say that application of the glutathione depletion hypothesis to real life treatment was simple, if that's what you mean. It's pretty tricky for most people, including myself. There is still much to learn.

    Or are you saying that the glutathione depletion hypothesis is incorrect in regards to MCS and/or mold sensitivity?

    My point was, assuming glutathione depletion hypothesis is correct, that there is already one all encompassing hypothesis that explains all the things in the article, which the article never mentioned.

    So assuming it's correct, it gives you a framework of why things are the way they are, and how to proceed forward, instead of only understanding pieces but not the big picture, or wandering around randomly trying out things hoping they work. This is huge.
    Wayne likes this.
  5. caledonia

    caledonia

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    Cincinnati, OH, USA
    Ben Lynch has two new videos where he talks about glutathione, which is relevent to this thread.

    Folate and Methylation Defects and Metabolism in 2013: Clinical Breakthroughs (Part 1 - Presentation)


    7 minute mark: Too much glutathione supplementation causes feedback inhibition
    48 minute mark: explains how NAD (niacin) helps convert oxidized glutathione to reduced glutathione and why this is important

    MTHFR and Methylation Advancements: Q and A with Dr. Lynch (Part 2 - Question and Answer Session)


    29 minute mark: don't supplement with glutatione if you're deficient in NAD as it will just make oxidized glutathione. If you're deficient in NAD, you may take a glutathione test and have the results come out ok, when you're actually deficient in glutathione. This is because the low NAD masks the deficiency.
    Wayne likes this.
  6. AbbyDear

    AbbyDear

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    @JanisB Thanks for the answers.
    jenbooks likes this.
  7. jenbooks

    jenbooks Guest

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    Caledonia, I'm saying....

    1) Glutathione depletion is only one cause of inability to detoxify (or inadequate detox)
    2) Methylation is such a basic function that you cannot necessarily predict from the few polymorphisms being studied, whether a person needs the basic methylation supplements that are so popular today, or whether they will react adversely. Methylating genes and viruses is both good and bad. For instance, you don't want to overmethylate your tumor suppressor genes
    3) So much is yet to be learned, and when a doctor sells his own supplements I raise an eyebrow as to his objectivity
    4) Lots of other pathways can be involved in sensitivity to chemicals or poor detox. Pon1 for pesticides, SOD inside the mitochondria, various liver pathways and many more.
    In addition, chronic infections may be playing a role and once treated, detoxification might resume
    AbbyDear likes this.
  8. South

    South Senior Member

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    I'm not sure about something: based on this article, Dr. Miller didn't seem to have any recommendation as to what can be done about MCS (granted, it's only one article, which cannot replace a doctor's visit, but I would think there might have been some hints in her wording as to whether she has any answers to the problem, if she does have any answers). If she is just trying to define the existance of mcs, ok, I guess that's something for the future of getting the disorder recognized by mainstream. I just wish the article had been clearer as to whether she does anything for it.

    I have low grade mcs -- enough to have extreme empathy for those who have it worse than I do - and if I get frustrated at the lack of doctor interest in solving the problem, then I'm sure those who have it worse than I do must get frustrated as well. I went to an alternative MD once who discussed his awareness of the existence of the problem, but again, had no answers at all as to what to do about it, and I left his office completely frustrated.
    Wayne likes this.
  9. Wayne

    Wayne Senior Member

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    Hi South,

    I just ran across this 2 1/2 min. video a couple days ago as I was researching deep liver and gallbladder cleansing. This woman claims to have completely recovered from MCS, and now runs a business (Optimal Health Network) trying to help others do the same. I haven't had a chance to persue her website yet, but thought I'd at least post a link here while it's on my mind (never know how long that will last). :rolleyes:

    How to Heal from Multiple Chemical Sensitivities
  10. jenbooks

    jenbooks Guest

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    She's not acting in the capacity of a physician, but a researcher trying to establish the validity of the condition. Were she to start offering solutions it would be very problematic--since she isn't treating patients. She just can't do that. If you want to see good research by an MD in a university setting, google Stephen Genuis (he's Canadian) and look at his treatments.
  11. Graeme

    Graeme almost there...

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    Thanks for the great blog Janis!

    We have a lot in common. I'm going to PM you with some of the things you mentioned that really resonated with me. It's important for us to post when approaches that are not widely accepted by our community, but have such relevance for so many of us, are incredibly helpful and reveal so much about the disease. The fact that extreme mold avoidance has helped most people that have tried it with the cardinal symptom of PEM deserves a whole lot more attention than it has received.
  12. Allyson

    Allyson *****

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    NOt read all but allergies are very common in EDS - Ehlers- Danlos Syndrome
    for unknown reasons

    EDS has many symptoms similar to ME and so far many that I know of - over 100 - have been re- diagnosed with EDS after and ME/cfs diagnosis more info here


    http://forum.notcrazy.net/index.php?topic=9571.0

    cheers

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