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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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So Frustrated and Confused: Need a research coach/assistant. Will pay if you can help.

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by chilove, May 27, 2013.

  1. chilove

    chilove Senior Member

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    I swear I don't know how you guys know and understand all this. It's more than a bit overwhelming. You guys are light years ahead of me with all the medical and chemistry stuff!

    All I know is that I started mb12 and methyl folate because I found out I had the MTHFR mutation and had protein metabolism and food intolerance issues and since starting the protocol it has been one crazy roller coaster of clueless trial and error (MUCH ERROR AND MUCH OF IT PAINFUL AND DEBILATITING) with some things getting better (energy, strength, muscle wasting, and OCD all much improved) but some things getting MUCH worse: histamine reactions are crazy bad, food intolerances increased, EMF sensitivity for the first time ever. Insomnia and protein intolerance still persist. I did have two amalgam fillings removed during this time and don't know how much of my symptoms may be related to that.

    I can't afford a specialist right now and with the EMF sensistivity the time I can spend researching online for answers is limited. If anyone would be willing to assist me research this stuff and help me understand the basics and point me in the right direction I'd be eternally grateful and be happy to pay. I can't afford too much but was thinking maybe someone would be willing to help via email/skype for $20 per hour or something.

    I REALLY want to improve my health but I just can't figure all this out.

    Thanks!
     
  2. Valentijn

    Valentijn Activity Level: 3

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    There'd probably be some issues with any of us accepting money in exchange for medical guidance, and I think most of us would be happy to help you however we can for free (with the understanding that we aren't giving medical advice). If you could post all of your test results in one place, including genetic ones, I for one would be happy to take a look when I'm up to it. :nerd:
     
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  3. A.B.

    A.B. Senior Member

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    Try some selenium if you believe that mercury may be involved in your health problems. Methyl donors may make this problem worse, so you may want to use non-methyl base B12 and folate forms.

    By the way, I think an important point to make is that one should not believe in theories unless they clearly are confirmed by experiment. The point of a theory is to guide experiments so that you're not proceeding blindly; a theory is not there to replace experiments and observations. Try to avoid too many things at once or it becomes difficult to learn anything.
     
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  4. brenda

    brenda Senior Member

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  5. chilove

    chilove Senior Member

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    That would be awesome. I haven't had any tests in awhile and all the latest ones are just metabolic panels. I got the MTHFR mutation test done about a year and a half ago and I have both the C677T and A1298C. I havent had any other genetic testing done. I don't even know where to start or what tests I should be asking my doctor for. My current doc is a very sympathetic GP but has no knowledge about MTHFR, autoimmune conditions, or any of the health issues I'm dealing with. He will however order any test that I ask for and prescribe things I want to try. I will PM you my email address if you'd like to write me directly. I would be eternally grateful for any help.

    Thanks so much!!

    Audrey
     
  6. chilove

    chilove Senior Member

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    I had forgotten about selenium. I was taking a liquid form for awhile but couldn't really tell if it was doing anything or not, it's not easy to get on a raw vegan diet so I'll add it back in and see it helps. Thanks so much!
     
  7. chilove

    chilove Senior Member

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  8. adreno

    adreno 3% neanderthal

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    I think you have some inflammation going on, and the methyl supps are making it worse. How much mb12 and mfolate are you taking?
     
  9. caledonia

    caledonia

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    One thing I would suggest doing right away is spending $99 and getting your SNPs tested at 23andme.com. You're going to need that info to start figuring out things. It's taking about 6 weeks to get results back now, so you might as well get started right away.

    Then I would suggest either cutting back or stopping the methyl supps altogether for now. Get it to a level where you can tolerate whatever the symptoms are.

    There are several phone consultants available via MTHFRsupport.com. These are people in the medical field who do consults for a fee. They're well versed in more than just MTHFR SNPs. But they're still going to want to see your 23andme results, so get started on that now. I'm not sure what they charge or if that would be affordable for you. But it is another option.

    Once you get your 23andme results, then either people on here or others can help you better.

    In the meantime, read/watch all the links in my signature, starting with the Methylation Made Easy videos. If you have a smart tv or set top box which gets Youtube, you can beam the videos over to your tv which might reduce EMFs. Maybe you can print out some of the other links, such as Heartfixer.
     
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  10. Dreambirdie

    Dreambirdie work in progress

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    One really important thing I have learned about the methylation supps:

    THERE IS NO SUCH THING AS TOO SMALL A DOSE.

    Keep that in mind. Don't try to take more than you can handle. Even a speck can be enough.
     
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  11. determined

    determined Senior Member

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  12. aquariusgirl

    aquariusgirl Senior Member

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    Completely unconvinced that knowing yr snps makes a difference once u r sick.....it's all about epigenetics at that point...plus s how me one person who has figured a way out of this based solely on genetics?
     
  13. Valentijn

    Valentijn Activity Level: 3

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    The recommendations above regarding small dosing and SNP testing are both pretty relevant (and connected). Some people with methylation problems are very bad at tolerating methyl- supplementation. Looking at the genetic data might help in finding ways to dodge around the various obstacles.
     
    Dreambirdie likes this.
  14. caledonia

    caledonia

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    This suggests to me that you don't understand the whole methylation/epigenetics thing. How do you know what your epigenetics are if you don't know what your genetics are? If you don't know, then they're just random symptoms - see #1 below.

    Knowing your SNPs is the roadmap out of hell. Ideally that would be combined with some functional testing.

    In my mind the choices are thus:
    1. Just addressing symptoms either with allopathic medicine or alternative medicine - good chance of getting stable, low chance of getting truly well
    2. Taking methylation supps without knowing your SNPs or functional status - It may be at least somewhat helpful, but there's a good chance of running into problems that you can't figure out
    3. Taking methylation supps solely based on your SNPs - this is a better situation, but there is a good chance of wasting money and effort on things you don't need or missing things that you do need.
    4. Designing a custom methylation program based your SNPs and functional testing such as the Nutreval test, Metametrix stool test, etc. - good chance of improvements, plus being able to avoid pitfalls.
    I believe #4 combined with self muscle testing to determine which supps and what amounts you need at any particular time, can be very effective. This is what I'm doing.
     
  15. determined

    determined Senior Member

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    Caledonia, I am interested in your experience with muscle testing. Can you provide a link to information on how to learn it, please?
     
  16. caledonia

    caledonia

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    I used this video successfully to learn it:

    Don't worry about the mystic/new agey sound of it. There is at least a partial scientific explanation.

    You should be holding the supplement in your lap or hand so it's within your body's electromagnetic field.

    She doesn't cover how to test for amounts, but I just use the same method to ask the same yes or no questions regarding amounts. You can sort of "trial and error" your way by using questions instead of actually taking supps and experiencing bad reactions. Hope that makes sense.

    I use two fingers to swipe because one finger was making my finger joint hurt.
     
  17. NilaJones

    NilaJones Senior Member

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    Thanks, caledonia! That numbered list was very helpful to newbie-me.

    Does 23 and Me just do one standard panel for everyone? Or is there a specific set that I should ask for, as a person with fatigue issues?
     
  18. Valentijn

    Valentijn Activity Level: 3

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    It's a piece of the puzzle, and I doubt anyone is expecting a cure. But it can help narrow down where things are going wrong, and eliminate much of the guesswork regarding which supplements and drugs are going to work best, or cause problems, etc.

    And it's only $99 to find out, which isn't a large amount compared to semi-random supplements we end up trying.
     
  19. Red04

    Red04 Senior Member

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    Maybe we hit the lottery, but number 2 led to a 95% recovery in about 2 months with my wife. I can't follow every poster, but it seems there are people who have an adverse reaction and stop in the middle of number 2. I know how scary it was wading through number 2 blind and there is no way my wife would have stuck with it, if it was up to her. I know some people have tried to push through for a few years and didn't make it. I wish we had a way to track successes/failures.

    What percentage of people get stuck on 2? 3? 4?. How many recover, etc... I sometimes feel we get a negative "spin" because (logically) mostly people having problems post on this board. People who recover are off enjoying life....

    Have several people tried number 2, got stuck, went to number 3 or 4 and fully recovered? Are there a lot of people that have recovered successfully from 3&4? Theres lots of info out there and lots of guidance, but I follow this board pretty closely and it doesn't seem like the "masses" are posting about there successes with 3&4. When someone posts a problem they are having, the response isn't "I had the same issue but I treated SNP X this way and SNP Y this way and detoxed Z this way and now I fully recovered".

    The response is typically ben lynch this and yasko that. Don't get me wrong, I would love for there to be a roadmap that everyone was using to get through this. And it would be foolish not to try to "dial in" all these methylation problems. I could help several relatives and family friends and co-workers, but I just dont get that from reading here.
     
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  20. Valentijn

    Valentijn Activity Level: 3

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    It probably depends on how complicated the problems are. ME/CFS patients tend to have a great many issues - not something simple like vitamin B12 deficiency. If we did the "guess and try" approach for everything, we'd be doing it for decades. Hell, some have been.

    A lot of us need a way to find out a bit more. And most of us do give 2 a try before proceeding to 3 or 4 :D
     

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