OAT - Organic Acid Testing - is it useful?

[SuzieSam]

I have to respectfully disagree with you @Jonathan Edwards about the judicious use of supplements.

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.

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.

People who have certain mainstream, medically identified mitochondrial disorders take Coenzyme Q10 and other supplements to boost their Krebs Cycle function. This doesn't invalidate their diagnosis. I don't see why looking for energy route breakdowns in us, and attempting to support in the same way should invalidate our legitimate claim to validity.

I suspect that certain ME doctors like Jacob Teitelbaum based their "Chronic Fatigue" supplement protocols around the mitochondrial support of "true" mitochondrial disease. Although he hasn't done a double blind trial to support his claims, they come across to a layman as sensible. But that's the genius of snake oil... It was useless for me, but my thyroid is appalling. I wonder if it's truly effective...

I'm not surprised people take supplements - we feel so hopeless, and supplements are hope in a bottle. Our attitude is, "Worth trying, maybe it's not ME, but some deficiencies..."

There ARE valid deficiencies that can be corrected. I'm astonished that you think we should take an entirely laissez faire attitude and just accept our miserable fate until the" experts" cure us!

Especially since we don't know precisely who is correctly diagnosed with ME, and who has been "wastebasket diagnosed".

I know for certain that I have several thyroid and sex hormone problems that have been ignored and/or mistreated for over 6 years by my GP, gynaecologist and endocrinologist. My neurologist was shocked at the mishandling and gave me the push to go outside the system, just recently. Furious doesn't cover it.

For my daughter, it does look like ME now, when before she was bouncing back fairly well to function in school holidays when she could sleep in till 11am, as her wonky melatonin decrees. We had thought she'd grown out of fibro somewhat...

But, what if this return to exhaustion is a Zinc deficiency - I'm certain my daughter is low, being a non seed, nut and bean eating, 2 eggs in a week if I'm lucky, vegetarian. And deficiency causes some of the problems she's experiencing - sudden onset of acne, period pain and irregularity, and cold virus susceptibility. It's an important factor in digestive enzymes and lack of zinc can cause malabsorption and loss of appetite.

http://www.larabriden.com/7-ways-zinc-rescues-hormones/#comment-20970

http://www.medicaldaily.com/zinc-deficiency-digestive-health-effects-389339

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.

Metabolic pathways being broken is what I thought when supplementing didn't work. If the process is off-line, supplementing the component parts is useless. And no one knows how to repair them - so depressing.

I hadn't thought of her cortisol being part of a disease process. For her, it appears linked with her bloody awful sleep disorder. Melatonin and cortisol should be inversely promotional, I think... Hers is so wrong.

And so I return to my original question - what's a reliable way of testing for deficiencies if OATs are questionable, and plasma unreliable? Red blood cell levels?

 

[SuzieSam]

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.

This is is precisely what I'm concerned about! Thank you @mrquasar. Although, then I read testimonials is like yours @Silence, and I wonder...

Do you know what lab your MD sent your test to, @Silence? I'm curious to know if s/he used one of these non-regulated labs or a hospital lab like the UK's NHS ones.

I don't understand the American system at all, (I'm British and living in a country with similarly nationalised health care where strict, strangling rules are followed), so I don't know if the fact that your GP did an OAT on you confers validity or not.

I'm very glad you've been able to tackle your problems with the help of your OAT results. Who interpreted them for you? Did you have to figure it out yourself? Looks like a hard task.

 

[Sidereal]

I wish I were a healthy person who feels nothing when they take a supplement and thus concludes that supplements are just expensive piss. When I was healthy I took multivitamins occasionally and they never did anything whatsoever for me so of course I was able to easily jump to the erroneous conclusion that only a moron would take vitamins and claim that they feel better (or, typically in the case of ME/CFS, worse).

Then I crashed with severe ME and started reacting to everything and realised that none of this stuff was inert; it all produces specific physiologic effects, usually bad effects if you're an ME patient. I have low B6 for instance, as do many others with this diagnosis, but when I took a measly 5 mg daily for a couple of weeks I developed peripheral neuropathy which has gone on for 4+ years now. Conventional medicine claims that this is impossible and must of course be imagined by the crazy CFS head because you'd need to be taking doses 100x that amount to get such damage. I could go on and on and on about the incredible damage and amazing improvements I've had from various supps.

The reality is that doctors who deal with metabolic disorders have been treating patients for 50+ years with vitamins and various other supplements. That doesn't make those diseases any less real or deny the physiological abnormalities. So pernicious anaemia is not a real physiological disease because it responds to B12 therapy? A patient with mitochondrial disease who keels over from valproate doesn't have a real disease because the problem is reversed with riboflavin? Supplements clearly are not inert substances when you are a) ill with some particular disorder and b) take the right supplement that modifies the busted pathways.

The problem in ME/CFS is that people are diving head-first into unvalidated tests and thinking that supplementing things that are low is going to make things better. Those metabolites may be low FOR A REASON and maybe you'll make yourself a hell of a lot worse by pushing them up. People with this illness tend to eat diets that are a lot healthier than the general population and yet they are still deficient in everything. Ask yourself why this is and whether this could be for any reason other than a concerted, orchestrated effort by the body to sequester or not absorb those nutrients, perhaps in order to limit further damage from the disease process.

 

[bertiedog]

My energy has benefitted hugely from being guided by the results of a Genova OAT test. I don't believe Genova Diagnostics can be put into the category of quackery as I have followed many of their presentations and webinars which are always given by highly qualified doctors.

They delve into the emerging science always looking for a natural way to treat a dysfunction which is so often over looked by traditional doctors who simply are not trained in this way. I would give one example, a B12 deficiency possibly caused by a particular SNP which either slows the production of B12 or in it not being passed on in the Krebs cycle. From my experience taking an absorbable form of B12 can make a big difference to one's energy as can Co Q10 just as 2 examples.

Without this type of testing it is highly unlikely that one would know that we had that problem, your GP wouldn't have a clue. Obviously there are many other things like hormones that need to be balanced but I am an example of somebody who has gone from being sofa-bound in 2000 and unable to have any life to someone who walks an average of 8500 steps daily, does voluntary work at my local Visitor Information Centre and can enjoy my life, all this with very little input from my GP.

Its all been from consulting with alternative or integrative doctors and from using tests from Genova or the labs that Dr Myhill uses.

Pam

 

[arewenearlythereyet]

Hi @SuzieSam I tried the oat test after agonising over the potential quackery of it all. I am still skeptical about the gut stuff (sorting this seems futile...painting the forth bridge springs to mind), but the b vitamin results have been useful.....showed that I didn't have a block on b12 which was useful to know (mma). They give you a report but I used this with the supplier of the b12 oils who is a PhD and has studied b12 deficiency for over 20 years since I trust his judgement. However it does have limited use...the best judge with supplements is to do it methodically and judge for yourself....if you feel better then it might be working. Unless you have bags of cash you can't do an oat test every time you change your regime or anything else for that matter so it's always a snapshot in time (like any test). I think some latch on to it as some sort of definitive proof, but this will never be that since your body is changing all the time.

I'm rambling but I agree with @Valentijn that the test is "partly useful" and also have found benefits from methylation supplements mainly from advice on this site. b12 supplements have definitely removed 90% of my brain fog and there is plenty of science for this so I'm not sure about @Jonathan Edwards " hard line" on this? Even though he is one of my favourite posters. Having said this, supplements are about quality of life not about cure for me.

 

[alicec]

It is not quackery though the people selling the tests certainly overclaim and exaggerate.

It is mini-metabolomics.

I fully intend to have the more extensive metabolomic testing which OMF is trying to set up in San Francisco (from the same company that Davis has used in his studies) but in the meantime, OAT tests are able to give some information.

I agree with @Valentijn - they are partly useful. We can take advantage of this usefulness without falling for the hype.

As @Jonathan Edwards points out, it is true that the recent metabolomics studies are not yet definitive and we don't know what is cause and what is effect. Still they make it clear that there is often quite dramatic metabolic derangement in a variety of pathways in CFS/ME patients, some shared, some individualistic.

As has been pointed out by others, we already have the model of metabolic disorders caused by genetic changes to enzymes. Using high doses of co-factors to stimulate or otherwise bypass the enzymic blockage is a standard approach which often, though not always, helps people survive and sometimes almost thrive.

The CFS/ME situation is even more complex since there appear to be multiple pathways affected. Some unifying factors have already been considered and hopefully more study will reveal more.

There is the additional complication discussed by @Sidereal that these metabolic changes are protective and messing with them could be to our detriment.

Alternatively, as Naviaux and Davis appear to believe, it is a two stage process. Initial metabolic changes to environmental insult may well be protective but at some point this becomes a maladaption. The body gets stuck into an unhelpful hypometabolic state. It is this state which seems to induce the many functional deficiencies that many of us have discovered when we began experimenting with vitamin and mineral supplementation.

Yes to get to the heart of the disease we need to understand how to unblock this maladaption, which I gather is what Naviaux and Davis are working on, and there needs to be trials of proposed treatments under controlled conditions.

I for one am not prepared to sit around waiting patiently while that happens - it could take years. I intend to continue experimenting with supplements with the aim of bypassing metabolic blockages. It's no cure but just as in the case of the inborn errors of metabolism, it might have some benefits.

We do need to appreciate the provisos raised by @Sidereal, but as she herself has reported recently, this approach can make a considerable difference.

In my own case, some supplements have likewise been very helpful, and OAT tests have been valuable in revealing some likely candidate for experimentation. I'm hoping the newer metabolomics testing will suggest a more targeted approach.

Many people on PR have reported some benefit from some supplements - improvement in energy, help with sleep, reduction of pain, moderation of OI symptoms - to name just a few. All of these small improvements make a huge difference to quality of life and living with the disease.

Yes some of it may well be helping us gain a sense of control, but some of it is real physical gain.

I intend to keep searching for sources of small gains while waiting for the definitive studies to be done and proven treatments worked out.

 

[Hip]

There ARE valid deficiencies that can be corrected. I'm astonished that you think we should take an entirely laissez faire attitude and just accept our miserable fate until the" experts" cure us!

I don't think the benefits of supplements come from correcting nutritional or metabolic deficiencies in those supplements, especially when you take high doses, except in a few cases (eg, B vitamins may be low in ME/CFS).

Supplements should be thought of in the same way that we view drugs drugs: as compounds which modify physiological processes.

For example, I find high doses of glutamine noticeably improve my IBS, but that does not necessarily mean that I am short of glutamine.

Likewise, myself and lots of others have found that N-acetyl-glucosamine is tremendously effective for reducing generalized anxiety disorder symptoms, but that does not imply a shortage of glucosamine in the body.

And high dose selenium has good effects on my ME/CFS fatigue and brain fog, which some others found also; but I am pretty sure that is not because of a bodily shortage of selenium.

 

[SuzieSam]

@Hip Actually the selenium is vital for thyroid function, and supplementing the deficiency been shown effective in reversing subclinical hypothyroidism! Symptoms include fatigue and brain fog.

That's brilliant, Hip!

 

[SuzieSam]

@arewenearlythereyet @bertiedog @alicec
Hell, now I'm confused again! And too exhausted to sort it all out. The damn curse of it all. I'll be back.

 

[barbc56]

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

Supplements should be thought of in the same way that we view drugs drugs: as compounds which modify physiological processes

I would ask what medicinal qualities and what physiological processes? I don't think we really know. If it's true supplements have these properties, and they might, then they not only need to be regulated as drugs but also come under scientific scrutiny. This means there has to be some kind of scientific plausibility along with valid studies or evidence that is as close as possible to this “gold standard”. Otherwise, it’s speculation or anecdotal. Speculation and anecdotes may be a start as far as forming a hypothesis, but they need to be tested further.

Even with rigorous scientific study, there's no guarantee a drug won't have unknown side effects or the same efficacy as the evidence or studies initially showed. But at least this process increases the chance that we have a good idea what is going on. Even if we don't understand all the underlying mechanisms, under scientific scrutiny we can get closer to knowing if something is really effective. Sometimes, what seems to be logical turns out to be counterintuitive.

If we don't have enough information then it just detracts from understanding what works and what doesn't. We can't tease out what are the causal factors and what is simply background noise.

The bottom line is that without credible evidence, we aren't any closer to finding a real solution for medical problems.

 

[Hip]

I would ask what medicinal qualities and what physiological processes? I don't think we really know.

You are joking right? Either that, or you must have strictly avoided reading all scientific literature and newspapers for the last few decades to have come to such a conclusion. Try looking up any vitamin, herb or supplement on PubMed. You will find thousands of studies detailing what physiological processes they are involved with or modulate.

 

[Hip]

@barbc56
Or instead of PubMed, a very readable resource that clearly and precisely details the physiological and medicinal effects of supplements is examine.com.

 

[Jonathan Edwards]

You are joking right? Either that, or you must have strictly avoided reading all scientific literature and newspapers for the last few decades to have come to such a conclusion. Try looking up any vitamin, herb or supplement on PubMed. You will find thousands of studies detailing what physiological processes they are involved with or modulate.

I agree with Barb, who is not joking and makes a lot of sense. Presumably what Barb means is that we have no knowledge of what physiological regulatory defects supplements would correct. Of course we all know what processes vitamin C and D contribute to but we have no idea what process derangements might benefit from any of these supplements in ME/CFS. Even for the mitochondrial function we have no idea if the changes seen by some people are compensatory such that the right treatment might be the opposite of what a supplement would do, if indeed adding extra input did anything.

I would add that 'scientific' here just means reliable. So scientific testing of the value of supplements is just like testing a car for roadworthiness and efficiency. It is like test driving a new BMW model to make sure the newly designed wheels do not fall off at 60mph. Ideas about what supplements might do are a bit like the fad for spoilers on the back of cars in the 1980s. They were supposed to improve aerodynamics. It turned out that the best aerodynamics come from a boring Honda Civic blob. Similarly everyone was tricked into thinking diesel was environmentally friendly and now we know it is the opposite. It is all just making sure you get reliable evidence.

 

[barbc56]

You are joking right? Either that, or you must have strictly avoided reading all scientific literature and newspapers for the last few decades to have come to such a conclusion. Try looking up any vitamin, herb or supplement on PubMed. You will find thousands of studies detailing what physiological processes they are involved with or modulate.

@barbc56
Or instead of PubMed, a very readable resource that clearly and precisely details the physiological and medicinal effects of supplements is examine.com.

This Guardian article explores both of the issues you raise. It's a blog rebutting another Guardian article on supplements written by the founder of examine.com.

The Guardian's article links to the relevant sections on examine.com, where there are over 700 PubMed references citing evidence. It's true that PubMed is a great search hub, but it is hardly an endorsement for dietary advice. It is an index of every paper published in life science journals and eBooks, and with 22 million citations listed, the scientific quality varies

My bold.

The article also provides helpful suggestion to find the most reliable sources of information on PubMed.

As far as examin.com it turns out it's a company/website that purports to be unbiased yet the owner of this very same company has been warned several times by the FDA that the information given is misleading. The owner also endorsed a product that had not been approved by the FDA. He now owns a website selling supplements.

http://www.fda.gov/ICECI/EnforcementActions/WarningLetters/2012/ucm299634.htm

There are some legitimate data bases such as the Mayo Supplements and Drugs database which reviews these by what the scientific evidence shows for things such as efficacy, safety, interactions and warnings. For some there may be some evidence behind the supplements and herbs. However, I've never run across a review that goes beyond saying some studies suggest or may be useful for a health condition but that does not translate to mean there's enough science to say they can be used for medicinal purposes or replace pharmaceutical drugs.
http://www.mayoclinic.org/drugs-supplements

 

[Jenny TipsforME]

It is probably important to acknowledge that with supplements we are experimenting at our own risk not quite in the dark, but in twilight. A sort of caveat of "symptoms when taking supplements can go up as well as down ".

Many of us think this is worth it for the potential gains. As @alicec says we're not prepared to sit or lie around for years waiting to see if official, reliable science gets its act together to produce effective treatment. When that does come to pass I will be ecstatic to switch over to verified treatment.

When I did the Mendus (citizen science style) diet study there were a few things that were statistically significant associations . Eg higher selenium was associated with higher mental clarity. Nutritional information was way too complex to be consciously aware of how much of each nutrient I was eating. Since selenium can be quite difficult to get in food I do now take this as a supplement though not everyday. You can read my write up of the experience here (also discusses confusing magnesium results, B2, B12, zinc, iron).

Quote from the study (you could also apply to supplements)

“It’s highly unlikely that diet causes CFS/ME, yet it is very likely that diet influences CFS symptoms. What you eat is all your body has to work with, in its fight to maintain health. It would be unrealistic to expect to be cured in this study, but you may learn how to feel a whole lot better. Furthermore, you also get the support of our online community as well as our scientific expertise, statistical analysis and presentation of your results. Not bad for free.” (instructions)

I also use examine.com to look up supplements I'm already interested in. They have a useful layout for showing the strength of the evidence. Supposedly it isn't biased so that Guardian article is a bit concerning @barbc56 but pwme have got to know by now that nothing is unbiased.

Also I think for healthy people that article is fair enough, most people don't need supplements, but we're in quite a different position. Take the example of protein powder in the article. For most people a waste of money but if you are a pwme who is struggling to eat, and isn't getting energy from glucose effectively, protein powder could be just what you need.

 

[arewenearlythereyet]

Wow. This feels like a political rally or something.

I agree pseudoscience can be compelling and misleading, and people that just quote one pubmed abstract to validate a poorly thought out idea should be judged with a degree of scepticism. Scientific principles however do work on the argument that unless you can disprove a theory by conflicting evidence and propose an alternative theory then the existing theory stands.

Having worked in research myself, I have read enough "scientific" papers that clearly get it wrong and have seen abuse of publications that are more about making a name for the "scientist" rather than actually doing science for any benefit whatsoever. This is why I treat abstracts as what they are....a punchy advert that draws your attention. If you quote abstracts without checking the report itself then you are a bit naive as to how science really works. My point is that there can be a lot of "evidence" based on bad science.

Drs do prescribe supplements for certain conditions (e.g iron, b12). Supplements are not the only things that are not "regulated" that are prescribed by doctors to treat conditions. I think it will be an extremely long time before we get all vitamins and minerals regulated for all conditions so this Eutopia of everything being regulated will never happen IMO.

I think the issue is that we would all like a load of research on CFS, however ...its all a bit sketchy and just not enough ...not by a long shot. I will continue to cautiously experiment since I do not believe that there will be an alternative in the next 20 years and My experience of the medical profession suggests that even when the evidence is there with a prescribable treatment all regulated and controlled, it is still hit and miss as to whether you will receive the correct treatment. Just look at how many people with pernicious anaemia are not getting the correct treatment when the nice guidelines are really clear.

 

[Hip]

For some there may be some evidence behind the supplements and herbs. However, I've never run across a review that goes beyond saying some studies suggest or may be useful for a health condition but that does not translate to mean there's enough science to say they can be used for medicinal purposes or replace pharmaceutical drugs.

I think you are perhaps not understanding the general ethos and practice behind taking supplements, which is somewhat different to the approach of standard medical science, where the general practice is: "you have been diagnosed with disease X, and we know from well-conducted clinical trials that drugs A, B, C and D can help this disease, so we suggest we start you on drug A, and see if that helps; if not, we can also try drugs B, C and D".

That's the sort of format the GP will offer. And of course this medical science format has been an extraordinarily successful one, and it is this scientific approach that will ultimately find a cure, or provide a highly effective treatment, for ME/CFS, rather than tinkering about with supplements. Unquestionably medical research is the way forward for ME/CFS and for the myriad other diseases out there. Let's not pretend that the world of supplements is going to solve the problems of the innumerable diseases that afflict humanity.


However, that does not mean that there are no benefits to be obtained from experimenting with various supplements. But the ethos and practice is different: first of all, with supplements, you tend to judge the benefits of a supplement not by any large scale clinical trial, but rather by your own individual N=1 trial examining the positive (or negative) effects of a supplement. Some of the studies conducted on a given supplement can guide you, but ultimately, it's your own perception of its benefits that counts (and if your perceptions are not sharp, or if you have been caught up in the placebo effect, this can be a problem).

Trying out supplements is thus more of an intuitive process, and generally requires a certain degree of intuitive self-awareness of one's own body and mind. It is more akin to intuitively sensing which types of food or diet most suit you, and which don't. If I intuitively feel that a nice good steak and chips would go down well in my current state of hunger, I don't need to see any clinical trials about the nutritional benefits of beef before I tuck in. You generally go by your own feelings and intuition regarding what diets suit, and what food you would like to eat today. Likewise, you go by feel as to whether a supplement is helping; if it is not, you can try another one.

The problem with the supplement approach, though, is that in my experience, a lot of people don't posses much intuitive self-awareness, and thus these people are not good candidates for tinkering and self-experimenting with supplements, because if the supplement does provide some definite benefits for either mind or body, they may not have sufficiently perceptive powers to observe those positive effects.

Or another issue is that people may be a bit lazy: they don't want to spend any time or effort in self-observation on whether a supplement works or not.

 

[Hip]

Ideas about what supplements might do are a bit like the fad for spoilers on the back of cars in the 1980s. They were supposed to improve aerodynamics. It turned out that the best aerodynamics come from a boring Honda Civic blob.

I don't disagree with you that the fad and advertising hype behind many supplements is one reason they are sold, rather than because of any positive effects.

However, I would think that for every person who buys supplements merely as a result of the advertising hype, there is another who buys them because they have observed a genuine positive effect from them.

 

[Jenny TipsforME]

lot of people don't posses much intuitive self-awareness, and thus these people are not good candidates for tinkering with supplements,

Technology is a friend with this. Record symptoms, record supplements. Look for association. Experiment with supplements, see if Association stays the same

Mendus.org and ME-CFS Assistant app are what I've used.

It does require dedication though. I'm taking a bit of a break from this. Still taking supplements intuitively but not recording info.

 

[Hip]

Technology is a friend with this. Record symptoms, record supplements. Look for association. Experiment with supplements, see if Association stays the same

Yes, I now write down every drug or supplement I take in a daily journal system set up on my computer.

Before getting ME/CFS, I used to rely on my memory, and my sensitivity to changes in my mind or body in order to gauge to effect of supplements or drugs; but now I am barely able to remember what I ate for dinner yesterday, so I need to write everything down, otherwise I'll likely miss any benefits or negatives from a supplement or drug.