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Thread: Learning about Kreb's Cycle, etc.

  1. #1
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    Aug 2006
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    Default Learning about Kreb's Cycle, etc.

    Are there parents here who have had Kreb's Cycle, mitochondrial testing, etc. completed? We have some of this included in some testing we recently had done - metabolic urine testing. Apparently we have some vitamin deficiencies that may be playing a role in some of the body's normal detoxification process...anyone know anything about these things?

  2. #2
    Join Date
    Jun 2007
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    Ashley - I'm new to this too. We recently had a couple Kreb cycle abnormalities turn up with dd's organic acid test (urine). One thing was something about an inability to digest fatty acids, so the recommendation was L-Carnitine, I think. There was another one I can't remember. Part of me wonders which part of the cycle is the real source of the problem, since it goes around and around LOL. For dd, we're going to first treat the yeast issue, and we also started the B12 nasal spray. But I can't remember what the specifics were without going back to the interpretation sheet I got from the lab. The nutritionist had additional recommendations. It's all so crazy - I don't have time to earn myself another degree (lol) to figure all this stuff out.
    -beth

  3. #3
    sugarsue is offline INCIIDer - A Community Creator
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    Default We did the Organic Acid Test

    and Savanna tested high for Citric Acid. The doc is not doing anything about that and is not sure why she'd test high for that. She will be retested as some point. Krebs was not the area where she had most of her imbalances. It did show that she needed support for many areas and have been taking supplements based on the results. They have been very helpful so far. Glad you are looking into it!

    Susan

  4. #4
    mickey2's Avatar
    mickey2 is offline INCIIDer - A Community Creator
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    we had lots of tests done by ped, dev ped, neuro, DAN docs etc including those listed. we had trouble making sense of them. it wasnt until we saw dr shoffner in atlanta (geneticist/mito doc) that we got some real understanding. ds has confirmed complex 1 mitochondrial disease along with carnitine dysficiecy despite a very healthy diet, crebral palsy (from traumatic birth), regressive autism, SPD, multiple food allergies and enviro allergies, closed PDA (hole in heart), gerd (had surgery for it) and suspected CAPD and a few other things.

    to get more info on the mito side of things, go to www.umdf.org
    as a side mito falls under the umbrella of the muscular dystrophy association too, so their site has some info too. http://www.mda.org/disease/

    hope this helps...it often feels like i need a degree in biomolecular medicine to understand the mito stuff. ive been slowly learning more over the past 2yrs but still dont feel i have a deep enough understanding to explain it to people effectively so they can "get it". hope this helps

  5. #5
    Join Date
    Jun 2006
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    Us too . . .

    I agree with Mickey that a molecular geneticist is the best doc to diagnose a mito disorder. Even our neuro completely missed my son's mito -- and my son's life would be very, very different if we had not persevered and gotten to the right doc.

    It really is true that an advanced degree might be the only way to understand it all. You might check out the mito groups on yahoo. The parents on the meta-mito-autism group are amazing (some of them literally *do* have PhD's in molecular biology!). Even if your concerns are not autism-specific there is a ton to learn there. The general mito list is also a fountain of information, but it moves *very* fast and I find it impossible to keep up with.

    I will tell you this as far as urine and blood work: when testing for mito and other "inborn errors of metabolism," they *must* do both fasting and post-prandial blood and urine. That includes eating a lunch with a standardized amount of protein between the two. If they don't do this, then the "snapshot" of the acid levels in the blood and urine will only catch the most extreme cases, those that are out of whack no matter the time of day or metabolic status. That was the whole problem with the first (three!) rounds of testing that we had done at CHOP; they did not standardize for what he'd eaten and when. Only when we examined what he looks like after not eating, and then after eating a known quantity of protein, and compared the two, did his abnormalities fully appear. (They were there on the earlier testing, but subtle enough to be dismissed by the skeptics at CHOP and idenitifed only by the super-specialist later).

    So in other words . . . welcome! You can learn a fair amount from us here and waaayyy more in other places too!

    Lisa

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