The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

OAT - Organic Acid Testing - is it quakery?

Discussion in 'General Treatment' started by SuzieSam, Jan 15, 2017.

  1. SuzieSam

    SuzieSam Senior Member

    Messages:
    201
    Likes:
    512
    Israel
    I'd be very interested in having OAT testing done if I really felt it was genuine. The problem is that there's a lot of scientific jargon thrown around and it feels quite like the 23andMe bandwagon that everyone jumped on a few years ago. But quite a bit turned out to be hogwash.

    This is from Great Plains Laboratory: "The Organic Acids Test (OAT) offers a comprehensive metabolic snapshot of a patient’s overall health with over 70 markers. It provides an accurate evaluation of intestinal yeast and bacteria. Abnormally high levels of these microorganisms can cause or worsen behavior disorders, hyperactivity, movement disorders, fatigue and immune function. Many people with chronic illnesses and neurological disorders often excrete several abnormal organic acids in their urine. The cause of these high levels could include oral antibiotic use, high sugar diets, immune deficiencies, acquired infections, as well as genetic factors.

    Our Organic Acids Test also includes markers for vitamin and mineral levels, oxidative stress, neurotransmitter levels, and is the only OAT to include markers for oxalates, which are highly correlated with many chronic illnesses.

    If abnormalities are detected using the OAT, treatments can include supplements, such as vitamins and antioxidants, or dietary modification. Upon treatment, patients and practitioners have reported significant improvement such as decreased fatigue, regular bowel function, increased energy and alertness, increased concentration, improved verbal skills, less hyperactivity, and decreased abdominal pain. The OAT is strongly recommended as the initial screening test.

    The Microbial Organic Acids Test (MOAT) is ideal for follow-up to the OAT and is often recommended by practitioners looking for a specific abnormality, to monitor certain microbial imbalances, or to assess treatment efficacy."

    Doesn't this look fantastic? We should all get this done! Right now! Why don't our mainstream doctors offer us this test? But the British NHS, (National Health Service), does do a similar one, and I'm certain Organic Acids are tested the world over, but not like this, but for: "Disorders of organic acid metabolism [which] comprise a diverse group of diseases whose biochemistry involves several areas of intermediary metabolism. These include metabolic pathways associated with amino acid metabolism, fatty acid metabolism and ketogenesis, and of pyruvate and carbohydrate metabolism including the TCA cycle". Source: NHS, UK

    It comes down to this: Is this a test that's been taken from the mainstream and utilised for fringe patients in a credible way for treatment? Or is it another bandwagon-cashcow?
     
    Sidney and A.B. like this.
  2. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    I think it can be of limited use. Just like 23andMe, it probably won't show the cause or cure for your disease, or get jerks to take you seriously, but it might help with some things.

    Similar tests showed low cysteine and high glutamate and glycine for me. Subsequently supplementing N-acetyl cysteine has been very helpful for me in dealing with "wired-but-tired" (or just plain ol' wired) symptoms and improved my sleep a lot. Low levels of a neurotransmitter, norepinephrine, indicated other treatments which have been very helpful in mitigating my OI symptoms.

    I wouldn't expect that you'd get the results and suddenly have the answer. You'll have a lot of confusing information which doesn't mean much to you at first. It'll take hours or days of looking things up and chatting with other people to get some of it figured out. And then you're looking at modest improvements at best (or maybe none at all), and no firm conclusion to looking into problems and treatments.
     
    Sidney and MastBCrazy like this.
  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,909
    This is hogwash

    The latter. Or at least, as presented, it has nothing to do with conventional medical science.[/QUOTE]
     
  4. ukxmrv

    ukxmrv Senior Member

    Messages:
    4,326
    Likes:
    4,394
    London
    The Great Plains OAT test is an old test. It's not something new or bandwaggony.

    I had a look on an old CFS treatment group and the Great Plains OAT was being discussed there 10 years ago.

    Mine was probably done since around then. Every now and then I read something relevant but like 23andme they are not resulting in curable changes to my heath.
     
    Zombie_Lurker and SuzieSam like this.
  5. TigerLilea

    TigerLilea Senior Member

    Messages:
    1,136
    Likes:
    3,405
    Vancouver, British Columbia
    My understanding is that screening for organic acid disorders is only necessary in newborns who display symptoms in the first few weeks of life. Personally I think a lot of the tests that people here get done are scams. Everyone is so desperate for answers that they are willing to throw money at anything regardless of whether there is any legitimate science behind the testing or not.
     
  6. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,173
    Virtually every test offered by alternative medical practitioners is a scam and total quackery. I think a big part of surviving with this disease is learning to live with uncertainty. It's hard not to internalise the stigma associated with this diagnosis but I think it's important to accept that for now there is no piece of paper that can "prove" to others that there is something physically wrong with you. I think it's best to wait for validated, legitimate tests instead of wasting precious resources on tests that are not valid. Latching on to pseudo-explanations can also lead to useless/dangerous bogus treatments.
     
    Alvin2, BurnA, barbc56 and 7 others like this.
  7. Cookie27

    Cookie27

    Messages:
    25
    Likes:
    3
    This is great... thank you all.. I was looking at the OAT test recently.. As for 23/me, why do you think it is not helpful? I had Yasko test done a few years ago and this has helped me so much! ie I now know to be careful with ammonia! as I have a terrible time with it (I had no idea previously). just cutting out has helped me so much.. B12 also has improved my life immensely. Can I ask, what tests you do recommend? ie homocysteine levels? etc..
     
    SuzieSam likes this.
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    Definite quackery. The SNPs which Yasko claims are associated with ammonia problems are extremely common (more people have them than not) and either do absolutely nothing or have a mild and beneficial impact. Her claims are baseless and contradict what has been demonstrated in published and peer-reviewed scientific journal articles.
     
    TigerLilea, Sidereal and SuzieSam like this.
  9. CCC

    CCC Senior Member

    Messages:
    368
    Likes:
    463
    The test can be useful, but the interpretations are not always so useful.

    The one we had in Australia helped with identifying a real B2 deficiency and a few other things, but we had to work it out through a lot of online reading. The comments in the report itself were close to useless.
     
    SuzieSam and Valentijn like this.
  10. SuzieSam

    SuzieSam Senior Member

    Messages:
    201
    Likes:
    512
    Israel
    Thank you so much everybody. I was hoping you'd give an opinion, Prof @Jonathan Edwards.

    I'm particularly interested in this kind of test for my 17 year old daughter who is struggling this year after a fairly good time last year. Academically, it's a lighter year, and September went well - up in the mornings fine...But suddenly she went back to being very exhausted, (fibro, sleep phase shift disorder, possibly ME too but shhh on that). Her blood tests etc are fine, thank god. Even though she's a vegetarian who doesn't eat beans or nuts, she has enough B12 and folic acid from taking pills.

    She is irritatingly wired but tired every night. Exhausted from the day, but raring to go because of lack of natural melatonin. She takes pills. It would be great to find if an imbalance like yours, @Valentijn could be a contributing factor and, if remedied, could help her.

    What test did you do? @Jonathan Edwards can you recommend any such test to find lack of nutrients and co-factors (or whatever it is)?

    I want her to do a 4-point salivary cortisol test to see if that goes up at night, but I don't know how we'll reduce that. Diet? Meditation?

    Waiting for accurate, double-blind testing, gold-standard everything is bad enough for me, aged nearly 42. For a teenager, with her education and future blossoming before her, the wait is impossible. I can't. I wont. But I will NOT do it blindly and stupidly!
     
    Last edited: Jan 16, 2017
    trishrhymes likes this.
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    Cysteine was low on a couple different urine amino acid tests. Might have been a blood test too, but I don't remember. Low norepinphrine (noradrenaline) was from a catecholamine blood test.
     
    SuzieSam likes this.
  12. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,021
    Aren't organic acids tests a simple form of metabolomics? Mine showed e.g. elevated pyruvate, which is in line with the research. I didn't think they were worthless.
     
    SuzieSam and bertiedog like this.
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,909
    Dear SuzieSam,
    As far as I now we have no reason to think that ME is caused by a lack of intake of anything or has ever been cured by taking supplements. If metabolism is altered it is almost certainly because of some abnormal regulation rather than deficiency and in general you cannot solve regulation problems just by trying to 'top up'.

    I am surprised that so many people bother with supplements. In a way it seems to be agreeing with the sceptical doctors that ME is not a real disease but just due to not eating the right stuff, just like being due to not doing enough exercise or whatever. As I see it ME is a real physiological abnormality and there is no reason whatever to think that supplements would have any effect on that. Lots of people feel supplements make then feel well but that applies to normal healthy people too - they sell millions of dollars worth of the stuff.

    There are some indications that in ME metabolic pathways are out of line. However, firstly we are still not sure all these findings stack up and secondly we have no idea what would be the right way to correct any regulatory imbalance. The idea that if cortisol is up you want to bring it down is to me crazy. You only start interfering with cortisol if you understand whether being up is part of a disease or a body's way of fighting the disease.

    So although these tests are in a sense a mini-metabolomics they are still a waste of time because we have no idea what to do about the results.

    To my mind the one useful thing we know about ME in 17 year olds is that a good percentage of them get back to a reasonable lifestyle for reasons we have no understanding of but should be grateful for. There is no evidence that any treatment does it - certainly not CBT or GET. I should not give personal medical advice but if it was my daughter I would throw away all the pills and supplements and try to focus on enjoying the good bits of living and let natural healing processes occur if they can.
     
    Nielk, TigerLilea, barbc56 and 8 others like this.
  14. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    Thank you @Jonathan Edwards from the bottom of my heart.

    That is the best summary and piece of advice I've seen. We simply don't know enough yet about the causes of ME, let alone how to treat it.

    I'm so grateful to have my own current way of handling the illness validated. This is especially timely for me, as I'm struggling with my own ME, and have been getting stressed about the fact that my daughter's ME has taken a downturn and I feel powerless to help her. Parental guilt that I'm not doing enough is very tough to live with. All I am able to do is give her emotional and physical support and encourage her to do whatever makes her life bearable. This statement helps enormously. Thank you again.
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,228
    Likes:
    31,909
    I have thought hard about this parental guilt business. Sometimes it is a spouse's guilt, or even a brother's guilt. My father was wracked with guilt as a doctor when his brother committed suicide. But the one thing I see very clearly is that the parents of people with ME that I know are entirely normal in their relationships to others. Some may seem warmer than others, some may seem stricter than others - but all in a totally normal way. Feeling guilty about what has happened to loved ones is entirely normal and pretty universal but is no indication that one has got things wrong. There is never a perfect way of doing anything if you are human being. I think the hardest thing is to let go and accept that one has done what one can and should not make things worse by becoming obsessed with what one might have missed out on. My wife is a very vigilant person. I am something of a fatalist. Sometimes she gets things right. Sometimes I get things right, or at least I stop her getting completely tied up in knots. On one occasion I saved her life. On another she saved my life. That's good enough for us. Guilt exists because it can sometimes be useful, but in the area of ME where the body's self healing does better than we can I think it is an unnecessary burden.
     
    meg22, merylg, BruceInOz and 6 others like this.
  16. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
  17. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    Some of them help with symptoms to some extent.

    Vitamins, minerals, and many other supplements have an established impact. It's also established that some deficiencies can cause real disease. Certainly multivitamins and such are overused by the healthy population, but specific vitamins and minerals seem to be overly dismissed by the medical profession as not being real treatments for anything.
     
    Tuskentank, Helen, meg22 and 7 others like this.
  18. mrquasar

    mrquasar Senior Member

    Messages:
    215
    Likes:
    814
    Houston, TX USA
    What really sealed the deal for me was when I read that the independent laboratories that perform these tests have no government oversight so there's been no third-party verification of the accuracy of ANY of their tests. In fact, a doctor sent a sample for analysis to several different such labs and got wildly different results, and none of them matched the results he got from a reputable institutional lab.
     
    TigerLilea, SuzieSam, barbc56 and 3 others like this.
  19. Jenny TipsforME

    Jenny TipsforME Senior Member

    Messages:
    1,133
    Likes:
    3,822
    Bristol
    I'm wary of lots of expensive tests. The OAT one I've thought of doing every so often but each time I read about it I'm not convinced.

    I do also agree with @Jonathan Edwards about getting out of the way and allowing the body to heal, if that's possible. When I got to 95% recovered I wasn't taking any supplements or doing any unusual diet or treatment. Money was really tight so I wasn't even eating good quality food and the place I was living was so poor it got me points on the council housing list. All I was doing was intuitive pacing (that's free!) and I gradually improved. It was somewhat mysterious though, that technique isn't working now.

    However, I do also get benefits from trial and error from supplements I don't see this in any way suggesting ME isn't real. If people with diabetes change their diet and take supplements I don't think anyone perceives it as less real, they think that they're taking responsibility for their health.

    If we're honest with ourselves supplements and tests also have a psychological function in maintaining some illusion of control, or hope that the next thing will really make a difference. This may help prevent comorbid depression. It is only a problem if we waste money we can't afford, end up feeling conned, or make our health worse.

    It is worth making some effort to track symptoms against new supplements though, to avoid wasting money or getting worse eg recording on ME-CFS Assistant app. I use this rather than lots of potentially quackery tests . I have no expectation of being cured this way, but if something helps me feel 5% better, then I feel 5% better and that is worth it. Recording symptoms is still subjective of course and you can misattribute cause and effect.
     
    TrixieStix, SuzieSam and trishrhymes like this.
  20. Silence

    Silence

    Messages:
    81
    Likes:
    68
    Northern CA
    I've had OAT testing done and its helped in regards to gaining some insight into what might be causing certain types of symptoms. For one, chronic diarrhea which gastroenterologist told me was IBS. The OAT testing help me identify candida albicans. And I treated it myself with some herbs with moderate success.

    Second my OAT showed very high levels of excitotory amino acids glutamate and aspartic acid. This helped explain certain neurological symptoms, such as, feeling manic, ear-ringing, vertigo, severe brain fog, and chronic headaches. I ended up taking some anxiolytic herbs, valium, and LDN, which help control these symptoms to a manageable level.

    Third, the chronic diarrhea that I have been dealing with has led to several vitamin deficiencies, and these deficiencies have caused some metabolic problems of utilizing carbs and proteins. These deficiencies mainly stem from the B-vitamins which the OAT helped me identify. Also had these test done through my GP office and they lined up pretty much the same. I am currently trying to correct these deficiencies, but it can be difficult because of how the b- vitamins work synergisticly.

    Its like a crap shoot. Some people find tidbits of info that help them and they can pursue further based on clues, while others find nothing or don't understand what to do with the results.

    When people are chronically ill and desperate for answers, especially when doctors can not help them or unwilling to look further, I feel this test provides options or clues that your body may be trying to give you. I don't believe it to be quackery, but more in line with that most people don't know what to do with the results or how to interpret them. My MD can order similar testing, so it is not only alternative practitioners who are ordering these test.
     
    bertiedog and Jenny TipsforME like this.

See more popular forum discussions.

Share This Page