Birdlady Posted June 27, 2010 Report Share Posted June 27, 2010 I'm hoping someone has some insight with these tests. Perhaps those of you with a mitochondrial disorder can help or give me some direction. I had these tested because I wanted to rule out/rule in a possible mitochondrial disorder as cause of POTS. My POTS was a quick onset which coincided within a few months of getting Epstein Barr Virus. I've never been the same since and that was 10 years ago now. a-ketoglutaric acid (AKG) 36.5 (0.5-16) HIGHVanilmandelic Acid 1.2 (1.2-5.9) very bottom of rangeFormiminoglutamic Acid 19.5 (<12.1) HIGHMethylmalonic Acid 25.9 (<19) HIGHSarcosine 58 (<48) HIGHLactic Acid 29.6 (6.3-36.4) Close to top of rangeIsoleucine 77 (24.-58) HIGHLeucine 100 (30-87) HIGHPhenylalanine 68 (26-71) Close to top of rangeTaurine 957 (68-538) HIGHTryptophan 112 (28-111) HIGHSome of the results suggest a B12, B6 or B9 deficiency, which is rather scary considering I take those daily and give myself injections of B12. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted June 29, 2010 Report Share Posted June 29, 2010 i have had both of these tests done and recentlysaw a speacialist in the metabolic field.i like you was out of range on a few (but by only a small amount) and the speacalist said looking at the results it looks fine, but they are going to run them again under diff circumstances. the specialist said you will get different results depending on whether you were fasting, how much protien you recently ate, what time of day test is done, and a whole host of other circumstances.if you had a real obvious problem in the results the results would be way out of range, thats what they told me anyway.maybe you could repeat the test in a few months and then compare results?are you seeing a specialist that knows how to interpret the results? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted June 29, 2010 Author Report Share Posted June 29, 2010 I'm not seeing a specialist and no one I see currently knows how to interpret them. I had one of my doctors run a NutrEval test as I was looking at my nutrient status and then all of these weird things showed up. I was fasting, the urine was collected first thing in the morning. There was nothing particular about the day and I was off all supplements for 5 days as recommended by the company. It also said to avoid artificial sweeteners and MSG which I don't eat normally any how. I contacted a mitochondrial doctor and she told me that if you are high on anything in the Krebs cycle then further investigation needs done, so I guess that's where I'm at right now with this. She told me if I wanted to do something on my own I could get lactate, pyruvate and CPK checked in serum. However she explained me to that a negative on those doesn't mean you don't have an issue! lol She just said that those are elevated in the more "common" mitochondrial disorders, so it's a good place to start.Upon further research, it seems like my body doesn't make adenosylcobalamin which is the form of B12 that lowers MMA. I think this needs investigated further too. There's no reason for my urine MMA to be that high after 3 months of daily B12 injections. I haven't found any literature that has seen MMA continue to be elevated for that long after starting daily injections of B12. I really appreciate you responding!! Thank you so much! The doctor I talked to said any results out of range are red flags that need investigated more. It's really unfortunate that the testing is expensive, invasive (in some cases) and even with negative results, it doesn't mean there's not a problem! Ugh...I think you are right though they like to run those tests while under different circumstances (after exercise or carb loading) to see how your body is responding.I might have a consult with this doctor I spoke to. She seemed really knowledgeable and amazingly she was very easy to talk to too. I find docs that specialize in weird disorders are often times not very good at communicating. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 3, 2010 Report Share Posted July 3, 2010 Dana,I haven't had this test yet so I'm not familiar with this. But, the people at CFS board - Pheonix Rising may be. If not, have you checked out any of the DAN boards yet ? Or tried googling autism and the test name ? This group is most likely to be having these tests run ... I'll probably get this run next seeing as how I know that taking essential aminos 3 times a day, esp in the am before getting up though, keeps my heart from pounding when I lay down due to OI ... Don't you just love trying to figure this out on our own ? lol ... BTW. my pregnenolone came in at < 5 and my doc thinks this is way too low. I think she said that they like to see it around 100. Have you looked at that yet ? I have some info at GFAB if you're interested ... I just googled it though, I'm no where near understanding it all yet. tc .. Marcia Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 3, 2010 Author Report Share Posted July 3, 2010 I've done a lot of google searches and haven't found much, so if you got something let me know! I tried searching that forum you mentioned and I found no results. It looks like (from what I've seen online) that Genova used to include a commentary sheet that told you what the results meant, but that's no longer included. Their own sample report said there would be something included and I got nothing... The doctor who ordered it for me, just wants to get $125 out of me to come in and "talk about the results" meanwhile he's told me that he has no idea how to interpret them! lol He's a nice doctor and very helpful, but this is so far beyond anything he's dealt with and I don't have the extra money to talk to him about it. He also has a 3-4 month wait. Since I'm on HC, I know my pregnenolone is non-existent right now. My concern about replacing it, it is that my 17 OH progesterone was mildly elevated prior to treatment. That could mean I have a mild case of LOCAH or that I'm a carrier for it. If I start to replace that pathway again, it could get backed up and that worries me. I have heard it's very good for most people though. The problem is that it can be converted to anything within the hormone pathway. Pregenolnone is the mother of all hormones after Cholesterol. Just be careful and watch out for any negative symptoms after starting it.http://jcem.endojournals.org/content/vol91...0646260001.jpeg Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 3, 2010 Report Share Posted July 3, 2010 Do you have to take HC ? Could this explain the high values on your test ? How's your cholesteral ? I was reading on my DHEA bottle that you need to have a good HDL before starting this ... I'm big on avoiding all meds and trying natural means. Which is one of the reasons the dietary approach appealed to me in the beginning. It's when I had tried this for a few years and wasn't 100% that I started looking at supplements and why my body wasn't able to repair itself ... that's when things got really complicated ... $125 for an IDK doesn't sound like a good deal to me either ... Do you have access to an integrative doctor ? I have a friend in Maine who sees someone up there if you're interested. Or I can ask my doc who she'd recommend up your way .... I googled "urine amino organic acid test" and found this. I'm not up on all the terms so I thought you may want to see this asap. http://www.newtreatments.org/ga.php?linkid=336There's a thread at Pheonix Rising that I was thinking of when I said that ... here it is ... http://www.forums.aboutmecfs.org/showthrea...light=essentialIMHO though, your best bet is to post this thread over there ... We have some very intelligent folks over there who may be able to help you ... I belong to a couple of autism boards so I'll look there too ... Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 3, 2010 Report Share Posted July 3, 2010 Dana,I've been out running errands today so I'm too pooped to read this right now ... here are the autism groups that I'm familiar with. You have to join but they don't spam you. Just be sure to select the option where you DON'T get an email everytime someone posts ...I don't know enough about your test to know if you'll find the info you want here. There maybe someone at GFAB too though ... tc ... http://health.groups.yahoo.com/group/Trying_Low_Oxalates/http://health.groups.yahoo.com/group/EnzymesandAutism/ Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 3, 2010 Author Report Share Posted July 3, 2010 Yes I have to take HC. If I don't I will die. No nicer way to put it. I've tried lowering my dose multiple times because of steroid guilt and I go into crisis within 2-3 days. It's not pretty at all. For 4 years I tried going the "natural" route and just ended up getting sicker and sicker. My cholesterol is really good. The last time I had it checked everything was well within range. Total 190 My HDL was 90 (>46) , triglycerides 44 (<150) and LDL 91 <130).I started taking DHEA because my levels were a pitiful 24. It's been one of the best things I've taken for my health. That one link you found, I had seen. That site is one of the reasons why I think I need to further investigate with a mito doctor. Gotta love this line from that site "Mild inborn errors of energy metabolism which may be compatible with survival at least into young adulthood, but not with normal development of mental and neurological functions have been associated with the excretion of elevated aKG." Since my AKG was more than double the top of the range, I think that needs further investigated. It sounds like everyone on the ME/CFS forum assumed they were all low in amino acids? I searched for the term NutrEval and got nothing, so I just moved on. I'm the type of person that likes to see real facts, numbers on a lab sheet rather than empirical data. Not that personal experience isn't important, but it's impossible to know how your metabolic/mitochondrial processes are functioning. Since I'm pretty high in some of the essential, non-essential and BCAA's, I don't feel supplementing would be in my best interest. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 3, 2010 Report Share Posted July 3, 2010 Sorry to hear about your impending doom ... ... Does this mean that you have Addison's or Cushing's ? I saw that you have adrenal insufficiency but didn't see either of these diagnosises. With you being sensitive to gluten, neither would surprise me. BTW. Are you eating any of those GF foods ? I'm super sensitive to gluten so I get nailed with myoclonus, insomnia and/or adrenaline rushes. HFCS turns me into the Energizer Bunny on crack ... What struck me about the posters at the ME/CFS board was that they said that the tests weren't good enough at this point. Heck if I know ... I'm a newbie at the whole amino arena and plan on getting tested anyway. My doc has offered to order this for me. Are you taking any amino acids or protein supplements like whey, rice protein, pea or hemp ? That's the only reason I can think of for having elevated essential aminos. As far as I know these only come from foods or supplements aka why they are called essential. Have you looked at foods that contain these aminos ? Isoleucine 77 (24.-58) HIGHLeucine 100 (30-87) HIGHPhenylalanine 68 (26-71) Close to top of rangeTryptophan 112 (28-111) HIGHThis is the only non essential on your list ... I can't remember right now where taurine comes from but since it's a non essential, an essential has to be in play here too. With taurine this high, do you have a lot of energy ? Taurine 957 (68-538) HIGHSorry I can't be more help ... Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 4, 2010 Author Report Share Posted July 4, 2010 I have Addison's. We don't really buy GF foods. Rather than replace wheat, we've just gotten rid of it from our diets. We do eat some brown rice pasta, but that's really it. As a treat I'll buy a GF brownie mix or cake mix on the rare occasion. I haven't had any HFCS in at least a few years and we don't eat any MSG.I didn't include all of the results in my first post. It's really long and complex so I left a few things out. Other non-essentials that were high:Cysteine 149 (21-78)Glutamic Acid 56 (5-21)Proline 18 (2-18) very top of rangeOther random things the test showed:beta-aminoisobutyric acid 354 (22-192)I don't eat enough fats in my diet, which isn't a real shocker to me. But I eat too much olive oil! lol RBC's of magnesium, copper, manganese, potassium and zinc were good.RBC of selenium was low.Blood mercury was just within normal limits. I had all of my amalgams removed over 2 years ago and apparently it's still in me. I do not have a lot of energy with the high Taurine. Nothing online talks about high Taurine. Every single website is like "take taurine for all of these amazing effects!". Well I'm not getting any amazing effects from it. I can't really say that my diet is that high in protein either. I eat a piece of chicken a day or some beef, but nothing out of the usual. My mood has been just terrible recently. I can't stand being around myself. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 4, 2010 Report Share Posted July 4, 2010 Sorry to hear that you're feeling irritable. It looks like you have a good reason for it though. I know I'm weird but I'd be having a gluten reaction to the foods that you're eating. Have you had your gluten antibodies tested lately ? or have you had them tested via a stool test ? My serum is normal now but my stool shows antibodies. I was told that the stool tests are more sensitive. I keep thinking of ways to google this ... lol ... Here's what I found when I googled "warning high amino acids" ... it addresses one amino acid at a time though. I haven't found one that addresses multiple high amino levels, have you ? Are you taking probiotics ? From the looks of this, dysbiosis could be to blame. http://www.merck.com/mmpe/sec19/ch296/ch296c.htmlAna from the first response on this thread had a good point about being retested ... So much for what they say about taurine giving us energy ... Hope you feel better soon ... Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 4, 2010 Report Share Posted July 4, 2010 http://www.metametrix.com/files/learning-c...ganic-Acids.pdfThis says that you could be dumping organic acids because of nutritional deficiencies, dysbiosis, etc ... I found this when I googled dysbiosis high amino acid ... there were other articles too ... Quote Link to comment Share on other sites More sharing options...
Birdlady Posted July 4, 2010 Author Report Share Posted July 4, 2010 To throw a curve ball into all of this. NutrEval checks for nitrogen imbalance, yeast, fungal and bacterial dysbiosis. All of those amino acids and markers were normal as they look for LOW markers, not high. My husband could not believe that not a single thing was flagged there! Here's a pic...Hopefully this is okay to post. Zeros are good and 10's are bad.I've never had stool testing done, but you are right those are the best. I just had a positive IgG for gluten, wheat, eggs, yeast and a bunch of other things so I avoid them all. My diet is not very exciting as we eat the same foods over and over again. I'm not very creative when it comes to cooking. We never eat out anywhere so the possibility of cross contamination or an accidental glutening is very very low. My husband is actually the one with the severe gluten sensitivity verified by Enterolabs, so I gave it all up for him. I figured it was easier if we both went GF since it's hard to stop cross-contamination if some people are eating gluten.My diet is mainly chicken, beef, rice, potatoes, salad, vegetables, butter, orange juice, water, coffee (in the AM) and that's about it. It's really boring. We buy some brown rice pasta and I use butter with pepper as my topping since I can't eat tomatoes. They make my face itchy! That PDF was very interesting. Thank you very much for that link. I'll be bookmarking it so I don't lose it! I've always thought I needed thiamin. I've seen some people say they have cured their POTS with a thiamin cream, so this is quite interesting!!I appreciate all the google searches you've done. You've found some great info/links. Quote Link to comment Share on other sites More sharing options...
Dizzysillyak Posted July 5, 2010 Report Share Posted July 5, 2010 I don't mind helping at all. I'm probably going to get this done soon too ... Those labs were way over my head. Other than I recognized a detox problem. It's great to see that you don't have a dysbiosis problem. Not to be a pest, but the folks at PR (Pheonix Rising) will know what those labs mean. You've heard of RichV (from the glutathione depletion - methylation cycle block theory) right ? He's over there quite a bit and will know what those tests mean. I saw the NutrEval is Genova Labs test. Do they have a list of practitioners who use their labs ? If not, a DAN practioner will understand those. I'm always looking for new foods too. I have some recipes at GFAB if you're interested. I'm GFCanary over there ... I have a seizure disorder so I need more fats too. I've been trying to eat at least 1/2 of an avocado a day lately. It's just not one of those foods that I look at and think yum avocado ... lol ... I made an avocado, coconut kefir, cucumber, raw onion, dill, GSO, S and P dressing yesterday that's really good though. I love raw nuts but I can't have very many because of the oxalates. I started getting kidney stones a couple of years ago ... Do you use grapeseed oil (GSO) ? That's a good one for getting some fats and E .. hope you get this figured out ... Marcia Quote Link to comment Share on other sites More sharing options...
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