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Requested suggestions on tests: gut, mithocondria, genes/methylation

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Sinclair, Jul 21, 2014.

  1. Sinclair

    Sinclair

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    Hello,

    It is hard to go blind on these issues. I have reviewed some threads and there is a lot of info regarding tests. The amount of info, limited ressources and energy make hard to decide, though.

    Thus, based on your experience, could you mention which tests you considered cost-effective and have been a turning point in your journey (diagnostics, treatment plan, benefits)?

    (I'll have to check additionally whether they can be performed by international shipping)

    GUT FUNCTION

    I understand a complete stool profile test is mandatory.

    @caledonia on her wonderful 4R summary suggests:
    Doctors Data Comprehensive Stool Analysis with Parasitology X 1 (often referred to as the CSA), and the Metametrix GI Effects Stool Test (I was told in another thread that Genova Diagnostics had bought Metamterix Lab and had changed this test)

    For leaky gut she adds:
    Genova Diagnostics Intestinal Permeability Assessment

    On my own search, I found Great Plains Laboratory which may be useful (and I have already checked I can perform it with a Dr. from my country), but I have not received any additional feedback so far, particularly from ME/CFS patients.

    MITOCHONDRIAL FUNCTION

    Claimed as THE area to support by many.

    Dr. Myhill's Mito Function Profile seems highly recommended by many and is shipped internationally.
    I suspect there are others competitive tests somewhere else, but I am not aware of. Suggestions are welcomed.

    GENES / METHYLATION

    Again, based on @caledonia's work: 23andME (sadly not shipped to my country) and Nutreval Test by Genova Diagnostics.
    RVK recommended Health Diagnostics Methylation Pathways Panel

    Thanks for your comments!
  2. xchocoholic

    xchocoholic Senior Member

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    Hi @Sinclair

    It would help if you added your country here.

    I'm in the US and had several csa's or cdsa's, etc. Luckily I was seeing an integrative doctor and didn't have to interpret these on my own.

    My most important tests were h pylori, parasites, food intolerances and nutritional deficiencies. But by the time I was tested I'd been on the elimination diet for 3-4 years and was already feeling better. So I don't know what would've shown up earlier. I'm still wrestling with OI, PEM, celiac and whatever other pathogens my body is hosting. ;)

    I was thinking it may benefit you to see what digestive tests are available where you are. Possibly check with a hospital lab to see what they run. I would think that H pylori, celiac and sibo are available everywhere. You may save yourself some time and money this way.

    Tc .. x
    Last edited: Jul 21, 2014
    Sinclair likes this.
  3. Sinclair

    Sinclair

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    @xchocoholic, many thanks for your reply.
    I am in Chile, South America.

    I have been tested negative for H pylori twice in the past.
    I have never checked for availability of celiac and sibo tests. Interesting what you say.

    I had a CT with enteroclisis in the small bowell last year that showed nothing.
    I suspect nutritional deficiencies/mal absorption, hypochloridia maybe, but who knows...

    I found a Dr. on autism with a biological approach that I plan to visit next week. She is my contact with GreatPlains Laboratory in US. I have not found a complete stool test analysis in my country. I had a stool test limited to parasites which was negative.

    Thanks!
    xchocoholic likes this.
  4. caledonia

    caledonia

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    The two best for me so far have been 23andme and Nutreval, as far as figuring out what's wrong with me and why, and developing a treatment plan to fix it.

    If you can't get 23andme, perhaps you can get Yasko's genetic test. It's more expensive though - around $500.

    The Nutreval is several tests rolled into one, so for example, if the gut section is showing problems, that would lead you to consider doing more extensive gut testing. Toxic metals would be another area that could lead to further testing.

    On the Nutreval, there is a nifty view of your Kreb's cycle, which shows where energy blocks are and what to avoid or supplement to fix them. I think this could be used as a substitute for Myhill's test.

    The HDRI Methylation Panel looks at how your methylation function is doing. I didn't find it that useful for treatment, except for it gave me a heads up about a possible CBS problem (which did turn out to be true). It was, however, the only test up to that point that showed how screwed up I am. If you start out with one as a baseline, it can be retaken from time to time to see how you're progressing with treatment.

    The Nutreval can also be used to see if you have a partial methylation block similar to the HDRI Methylation Panel.

    The Great Plains CSA looks similar to the other stool tests. I think it would be ok. You can use the old Metametrix Interpretive Guide for further interpretation.
    Sinclair likes this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @caledonia Is the Nutreval test better than the ION test by Metametrix? I was supposed to do the ION test but have not been able to yet.

    Also, what does "CBS" problem mean?
  6. xchocoholic

    xchocoholic Senior Member

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    Btw. A hospital in the US is a big building with an emergency room attached. They also have a lab and can run certain tests as soon as possible.

    I honestly don't know how these labs compare to the labs bio-medical professionals use. Your autism person will know tho. My integrative dr used both.

    Btw. Have you googled autism bio-medical treatments or books ? It's been out for awhile but I like the book "Healing the 4 A's".
    I'm sure they've added a few things.

    Take care. X
    Sinclair likes this.
  7. Sinclair

    Sinclair

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  8. Sinclair

    Sinclair

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    Thanks @caledonia I really appreciate and follow the work you have done.
  9. caledonia

    caledonia

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    I don't know if the Nutreval is any better, but Rich Van Konynenburg did several interpretations, which I compiled into the Nutreval Intepretation Guide. So you can get a lot more info out of it, especially oriented towards ME/CFS patients.

    CBS is the transsulfuration pathway. If you look at a diagram of the methylation cycle, you will see it branching off at the bottom. It's extremely important, because this is where glutathione, your body's major antioxidant is made. Rich hypothesized that the symptoms of ME/CFS are due to low glutathione.

    So if your CBS pathway is not working correctly, you'll be unable to make glutathione, and thus unable to recover from ME/CFS.

    I have more info on CBS, how to tell if you have a problem and how it treat it in Roadblocks to Successful Methylation Treatment linked in my signature.
    Gingergrrl likes this.
  10. Sinclair

    Sinclair

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    Sadly, neither the 23andme nor the Nutreval are available from my country. For the Nutreval, in addition, you need a physician's order. They both seem very useful.
  11. Sinclair

    Sinclair

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    I checked for other tests at greatplainslaboratory.com, and it seems they have available for international shipping other tests beyond the CSA that may substitute in part the Nutreval:

    Organic Acid Test (nutritional&metabolic profile)
    DNA Methylation Pathway Profile
    Amino Acids Urine

    However, they are not relatively cheap (around 1.300 for the 4 according to listed prices).

    I have no interest in this lab. It is just that they told me they work with an autism expert in Chile who I will visit next week. I expect to get a reduction for the package!!!

    What do you think?
    I think this is the fastest way I have in order to get tested and to begining to realize what is happening at least in my GUT and METHYLATION cycle. ( I think the pending areas for testing, mentioned in this thread, will be genes and mitochondria function )

    Take care!
  12. Gingergrrl

    Gingergrrl Senior Member

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    @caledonia Thank you for the info and I wish I was a more scientific person to grasp it all. I just did the 23andMe kit and mailed it off a few days ago to be processed. So I will be asking you guys tons of questions about that soon! I was also tested for the MTHFR gene (?) by the specialist I saw but don't have those results yet (and not sure how this compares to 23andMe? I'm assuming the CBS pathway is another 23andMe result?)

    Lastly, I am not sure what to do re: the Nutreval test. I have the kit for the Metametrix ION test but have been unable to find the time and logistics to do it as it requires going to a special lab w/an appt for a fasting blood test plus urine test (at home) that you bring to the lab and then take everything to mail yourself. The instructions are very confusing and I don't want to waste time and money on it if Nutreval is better?
  13. xchocoholic

    xchocoholic Senior Member

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    Hi @Sinclair

    Have you looked at the treatments available for the conditions found in the tests you're looking at ?

    If so can you afford the treatments ?

    Can your body handle them ?

    Do you have the energy to follow through with the treatment ?

    If not do you live with someone who can help you if you get sicker from a treatment ?

    I ask because I had most of the tests you're referring to here but I was unable to follow some of the treatments. My body can't process the supplements on the methylation protocol. I couldn't afford several supplements prescribed. My doctor took me off the last antibiotics we tried because everything I ate was going right through me.

    While having tests that show what's happening in your body can be a valuable tool, knowing these answers may save you time and money.

    You can always chose to treat a suspected problem and see how you react. The protocols are on the web.

    Changing my diet eliminated most of my symptoms BUT I'm still disabled. I'm a celiac who ate gluten for 50 years so healing may not be possible. I ate gluten for 15 1/2 years AFTER getting ill too. That just compounded my damage.

    I'm sure that taking sufficient sleep meds and supplements helped my body heal too. I've taken probiotics, fish oil, coq10, E, etc etc etc. While I assume these helped me heal, these can be found in food too. Nowadays I use mostly food for nutrients.

    Tc .. x
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  14. Sinclair

    Sinclair

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    Thanks for your comments @xchocoholic

    I never treated my gut issues but for small diet changes, and conventional testing which has never shown anything explaining my symptoms. After major changes in diet in 2012 I was able to stabilize my condition for a year longer. And now that my condition worsened I still see how small but significant changes in diet still have an immediate impact.

    But I am not clear what else I can do and I prefer to have a map for the journey. Today I suspect mal absorption, dysbiosis, SIBO, I actually have constipation, I am just a mess down there...:D Thus I need to have a sound and grounded plan for the GUT. This is where all started for me and I pretend to put my efforts in there.

    Viruses/Immunity, Mitochondria, Genes/Methylation & Adrenal Support, are the other parts of the plan I am currently designing, and I need some orientation, this is why I inititiated this thread (for Viruses/Immunity & Adrenal Support I had a bit more information).

    I have been resting for almost 3 months and taking supplements for the last two, more or less ramdomly with small improvements followed by worsening. I think I prefer to have more ground for my next steps. Affording treatments, having the body or energy to handle them or having the support for secondary effects of treatments, though very important, are considerations I want to postpone.

    I will recall your recommendation any time I have to decide for a new test anyway.;)

    Kind Regards,

    Sinclair
    xchocoholic likes this.
  15. xchocoholic

    xchocoholic Senior Member

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    Hi @Sinclair

    I completely understand your desire for guidance via testing and medical professionals. I felt the same way when I first started my healing journey in 2005. Luckily my insurance covered my testing.

    Along the way most of the people I met on similar journeys couldn't afford doctors or testing. Most self treated using the internet or employees of health food stores for information. I don't know how successful one method is over the other.

    Good luck with whatever you do. Tc .. X
  16. caledonia

    caledonia

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    The MTHFR gene is easily available by regular labs. 23andme also has the MTHFR gene. If you've done both, you can cross check them just to make sure they agree. 23andme will show if you have CBS mutations or not, but it can't tell you if CBS is expressed and needs to be treated. That's more of a functional measure.

    The prep for the Nutreval is similar, and similarly confusing.

    I just looked at the ION again. It has a whole cardio risk section that's different. It doesn't measure glutathione, but there are many measures where that can be inferred. Most of it seems similar. The Kreb's cycle/citric acid cycle is measured, so that's good. You can see where your energy cycle is blocked from that.

    If you have a kit, does that mean you've paid for it already? If so, might as well do it.

    Of course, if you did the Nutreval, the interpretation would be a lot more straightforward with the Nutreval Interpretation Guide. You might bust some brain cells trying use it on the ION. I've done one interpretation like that - it can be done, but it's not a pleasant task.
    Gingergrrl likes this.
  17. caledonia

    caledonia

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    Have you tried a direct online lab service such as http://integrativepsychiatry.net/ or https://www.directlabs.com/? They have doctors on staff to "rubber stamp" the request form. So you don't need the permission of your own doc to get the test.

    Is there any way you can send the test through a middle person so it appears to have a US address, for example?
  18. Sinclair

    Sinclair

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    Thank you Caledonia. This may work indeed. A friend in the US is already willing to help me with some supps I need to buy there, thus this would be just an additional request. My concern would be the timing for sending the samplers from Chile. Do you suggest labs will be willing to do this?
  19. Gingergrrl

    Gingergrrl Senior Member

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    @caledonia Thanks again for all the info. I will get the results of the MTHFR test on Mon but suspect 23andMe will take another few weeks. That was a great idea what you said re: cross-checking the results. I have never taken the methyl B12 or Folate so this will be totally new for me (assuming my results imply I should take them?)

    I didn't really understand the CBS part but will wait for my results so I can ask you a more specific question vs. hypotheticals.

    Thanks for looking up the ION test and I have not already paid for it (and only pay if I decide to do it and mail it in.) I don't believe the test kit that my ND gave me is the one with the cardio section but need to confirm that. If I am understanding you correctly, it sounds like the ION test does not measure glutathione but the Nutreval does (or are they just inferred on both tests from the other scores i.e. citric acid, etc?)

    I want to do the test that in your opinion best measures glutathione and mitochondrial function (regardless of the cost of complexity of the test.) Is Nutreval similar to the Mito test that Sarah Myhill runs for people in the U.K.?

    Thanks again!
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Gingergrrl43

    Just a note: reduced glutathione results (the kind we need) can be quite different that total glutathione. That said, not many labs measure reduced glutathione.

    I'm not Caledonia, but no, NutraEval measures levels of nutrients. Sarah Myhill's mitochondrials tests are different, but I'm not the one to explain her tests! :confused:

    Sushi

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