Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Sunday, June 9, 2013

Amino acid test results

As some of you know, I'm in the process of implementing a nutrigenomics plan based on the work of Dr. Amy Yasko.  Basically, under Dr. Yasko's plan, genetic testing (which I did earlier this year) is just the first step in a long process.  You create your initial diet and supplementation plan based on your genetic profile.  Then, after implementing that plan for a couple of months, you (and your doctor) order various tests to determine how to tweak your treatment plan.  You tweak the plan, then test again later, and further tweak it.  And so on until the test results all come up optimized, which can take years.  At that point, you should be feeling significantly better, in theory.  Probably not cured, but functioning at a much higher level.

I'm at the point now where I've implemented the so-called Step 1 (basic support) supplements and am looking for more information about whether and how to move on to the next step.  So I ordered a urine amino acids test (UAA), which is one of the common "next steps."  The test kit is ordered over the internet and the sample is then mailed back to the lab on ice.  I received my results this week.

First, the results are encouraging because many of the findings that my genetic profile would have predicted were confirmed by the UAA test.  This gives me a little more confirmation that there is, in fact, a verifiable process to this program.  The other nice surprise is that, even though the lab samples are tested at a lab in Illinos, they are then sent to Dr. Yasko in Maine, and she personally writes handwritten suggestions based on the results.  I didn't know that this was part of what I was paying for, so it was a nice added value.

The results themselves come in the form of a 6 page report, with the first 3 pages being the raw lab values, and the next three pages being a computer generated discussion of any significant findings. So while 76 different markers were tested, I'm only going to discuss the ones that were flagged for me.

Before I discuss the different supplements that I will be taking, let me talk about my concern about taking too many supplements.  Like a lot of PWME's, I sometimes wonder, when is enough enough?  But my answer for now is that (1) I'm going to give this program the time it deserves and reevaluate.  If I haven't significantly improved, then I will stop all the supplement madness.  But I need to discover the answer for myself or else I'll always be left wondering.  How long it will take, exactly, I don't know, but it could take up to a couple of years.  I'm OK with that.

(2) Also, keep in mind that when I add new supplements, I'm often discarding old supplements that either had no noticeable benefit, or very minor benefit.  I try to ensure that all of the supplements that I take at any give time fit into my supplement case.

How My Results Tell Me I Should Tweak My Plan

General impressions:  There is a contingent of ME/CFS patients and doctors who believe that the key to ME/CFS is gut dysfunction.  Probably the most famous proponent of this theory is Belgian doctor Kenny DeMeirleir.  This theory isn't too difficult to believe when you read the mountain of evidence stating that immune function begins and ends in the gut.  

I have always disregarded the importance of gut function with respect to my own ME/CFS because I don't experience strong gut symptoms like other patients.  But these UAA results change that.  Out of 11 "presumptive needs / implied conditions" listed on my UAA report, the most significant is "Abnormal intestinal microflora."  The textual descriptions of my various deficiencies all seem to point back to malabsorption of nutrients through the gut.  I was blown away by the number of times the term "protein malnutrition" was used, especially considering that my diet is certainly not lacking on protein.  The implication is that I have absorption problems.

As a remedy for general "abnormal intestinal microflora" I'm supposed to take a supplement called Vitaorgan (which is currently out of stock).  Among other things like amino acids, it actually contains "Immunoglobulin concentrate from bovine serum."  

Essential Amino Acids

High Taurine:  The first essential amino acid that is problematic for me is taurine (950 out of 170-1200).  This is a big one, and Dr. Yasko focuses a lot on getting taurine "under 50%" as an important milestone for those with the CBS mutation (like me).  In addition to the CBS protocol that I'm already doing (Yucca, charcoal, and reduced sulfates in diet), I'm going to add CBS+ RNA drops.  

Low Threonine - Next, I have very low threonine (60 out of a range of 60-230), which is an essential amino acid, critical to immune function.
"Threonine is an immunostimulant which promotes the growth of the thymus gland. It also can probably promote cell immune defense function. This amino acid has been useful in the treatment of .....multiple sclerosis [another neuro-immune disease] at a dose of 1 gram daily."  (
The recommended treatment for low threonine, according to Yasko's plan, it a supplement called NaturoMycin.   NaturoMycin is indicated for "aiding the body's natural microbial balance."  I'm not yet sure how microbial balance helps with threonine levels.  I will research that further when I get a chance.  I'm also supposed to consider getting a CSA/GIF (stool sample) test to further narrow the reason for my dysfunctional gut.

Low Valine:  Another essential amino acid called Valine is also slightly low.  The indicated treatment here is to supplement with biotin (vitamin B7) and 1 drop of Adenosyl- vitamin B12.  Adenosyl- B12 is an indicated treatment for "bacterial support for aluminum and lead excretion" - again pointing to the gut. (APTR p.173)

Non Essential Amino Acids

Low Glycine:  My low glycine level of 590 out of a range of 400-1800 apparently means that I need to implement SHMT support.  SHMT is one of my genetic mutations (+/-), and support for it comes in a from of folate called "5 formyl THF" and lactoferrin (for regulating iron levels).  (APTR p.128)  I'm holding off on ordering these supports until I can research them further.  

Glutamate:  My glutamate levels look normal when I look at the range (15 out of 5-45), but the indication is for me to supplement with a spray that balances glutamate/GABA.  Glutamate is an excitotoxin that, in high levels, destroys nerves in the brain.  Since my glutamate level is in the lower half of the reference interval, I'm not sure why this is indicated for me.  Need to research.

Gastrointestinal markers

Ammonia:  I had already had my blood ammonia levels tested, which were very high.  This urine test confirmed that they are high, once again indicating that the CBS mutation is working to ensure that nutrients are being converted into ammonia and sulfates instead of much needed glutathione.  This is yet another indicator that I need to work on CBS supports.  

I also had high urea: 410 (150-48).  The combination of high ammonia and high urea apparently indicates I should be taking special capsules that HoliticHeal developed specifically for people with MTHFR A1298C mutation (for which I'm heterozygous), called MTHFR A1298C capsules.  One thing I don't like about this supplement is it contains Green Tea Extract, which induces Th2 immune response, but I may try it anyway.  But this supplement is a "long route" support and won't be added until later anyway, so I have some time.

Interestingly, my homocysteine levels are also very low:  0.22 out of a normal range of <5.  This is another indicator that the CBS mutation is affecting me.  Previous blood tests actually showed that it was a little on the high side of optimal, so I'm not sure how to reconcile these conflicting results.  For low homocysteine, I'm supposed to use an oral spray called resveratrol. (That's not a typo, it's really spelled that way.)  Resveratrol is an antioxidant that's found in various foods.  It's not clear why this is supposed to help low homocysteine levels.  Need to research.

Magnesium Dependent Markers

Low Phosphoetheanolamine, Phosphoserine, and Serine:  The low levels of these three amino acids apparently mean that I need more magnesium.  I'm already taking a magnesium supplement, but taking less than the bottle suggests.  Maybe I just need to increase my dose to the amount recommended on the bottle.  In addition, the official recommendation is to supplement with something called PS Complex (or PS/pe/pc) - an amino acid complex.  This supplement is part of a trio of three supplements that the Yasko plan calls "shortcut supports" (along with DHA and Methylation RNA) because they support a shortcut around one of the common methylation cycle defects.  

B6, B12, Folate Dependent Markers

Finally, there is a section of the report that lists B6, B12, and folate dependent markers. Three of these are extremely high for me, all way out of normal range.  Cystathionine is 65 (range: 7-40), 1-Methylhistidine is 330 (range: 75-240), and 3 Methylhistidine is 1100 (range: 50-900).  So here we've gotten to the meat of what I need to supplement the most -- the centerpiece of all methylation protocols -- Vitamin B12.  But it's frustrating because I'm not supposed to start with these supports until I address the CBS mutation. 

The first one, Cystathionine, actually indicates a deficiency in a form of B6 called P-5-P.  However, people with CBS up-regulation should to avoid P-5-P.  So I need to resolve, through further research, whether or not I'm supposed to take P-5-P.   

I'm also told that I'm supposed to ensure that lithium is balanced (through a hair metals test, or HMT) before working on B12.  This is a relatively inexpensive test and I have already ordered it.

For those also doing Yasko's protocol, I learned that Dr. Yasko will not be commenting on any test results during the month of July so that she can work on a revised version of her book.  This is good news, as I've noticed lately that some of the information in her current version of the book seems to have been superseded or revised by newer information on her website.  It will be much easier to have all this information in one place.   


With every new test, there are more questions than answers.  But, there are only a few ME/CFS patients that I am aware of who have truly stuck through this process and had the patience, functionality, and financial ability to do it fully.  Those few people report they are doing significantly better.  So it's my hope that, despite a steep learning curve, this will all eventually begin to come together and lead to improvements that can be verified by tests and confirmed in how I feel.  


  1. Great post, like reading a scientific abstract! The topic of gut dysfunction is that I need to address given my secondary problems there. I have been reading about a 21 day cleansing period which includes microbiole treatment in liquid form, and gluten/dairy free foods, along with a few other steps I cannot recall right now. That is one area I have not really concentrated on, so I figure it can't hurt to do this. My doc also ordered a stool test last week, one test I have yet to have done through all this. Curious how much your genetic testing cost.....sounds like this really dials in to where you can focus your supplements!

    1. Bret,the genetic testing I had done was through the 23andMe company. It's $99. They send you a tube in the mail, you spit into it and send it back. A month later, you have your results. It actually tests thousands of genes, so you can get some other interesting results, but only about 20 of the genes are relevant to ME/ least according to the current thinking.

      I'm interested to see what works for your in terms of addressing your gut issues. I learn something new every time we talk--haven't heard of microbiole. It's funny how the treatment options never seem to end.

  2. Thank you for being so detailed. What is the first step in this protocol? Genetic testing? where is the best info for a beginner? Dr. Yasko's website? As always, thank you for helping those of us who have lost a little more of our functionality than you have!!

    1. Hi Elizabeth! Well, the first step I took was to get genetic testing through 23andMe...(see my comment above to Brett). Yasko actually prefers that you use her genetic testing company, but that's more expensive. Dr. Yasko also recently released a Simplified Methylation program that's more commonly used by us adults with ME/CFS.

      Here's a little 20 page booklet that she published to describe the simplified program.

      That might be a good thing to skim and see if you're interested. By the way, I have no idea if this program will work for me, so you could wait a while and use me a guinea pig if that sounds better. lol. I hope you are doing well. Take care.

    2. About the level of detail...I almost feel like I should apologize for it sometimes. Posts like this that go into great detail about test results and my nutragenomic plan are partly just for my own helps me set out a plan, preserve my research, and gives me something to look back at later when I forgot what I already learned. I just post them publicly here in case someone else can get some kind of benefit out of it, even though they relate to my personal test results.

    3. Don't you dare tonne down the detail. This is exactly what I need and, I'm sure, so many others. I do the same thing on my blog when I have the energy, using it as a place to collect all the info.

      Selfishly, I wish you would update this post with what you decided to do after your research and how it went. Thank you again!

    4. Hi Elizabeth! Nice to hear from you again. You left four comments recently and I think (if you don't mind) I'm going to respond to all of them in this one consolidated reply.

      Charcoal flushes: I did those simply by taking a charcoal pill once or twice a week. I took it near bedtime. Yasko said you may need to take a high dose of magnesium afterwards to ensure you don't get constipated, but I didn't have a problem with that so I never did the magnesium. I think* I noticed a difference in the urine sulfate results after I would take the charcoal.

      Yucca: Yeah, I've been using that for well over a year. I simply take the capsule apart and sprinkle it on high protein meals.

      Cutting out Meat: No, I never did that. While I was determined to cut very few corners when doing Yasko's plan, that was one area where I compromised. The low carb, high protein diet was so instrumental early on in my disease process to making me feel better (not to mention Candida continues to be a problem) that I wasn't willing to cut back. Instead, I tried to cut out most other sulfer producing foods and hope that that was enough. So far, I think it was.

      -Yes, my doctor ran the blood amonia & homocysteine levels for me. I'm not sure how necessary that was.

    5. Thanks. Patrick! I really appreciate your taking the time to reply. I know how busy you are. This was really helpful... ok, here goes. . Fingers crossed! :-)

  3. I admire all your endeavours... but it does strike me that we are all becoming our own clinicians and each working with a sample size of ONE!

    There's lots to absorb here (mentally and physically if you take all the supplements LOL ) I have been on a range of supplements since about May last year - they change a little sometimes as I try new things, but I haven't done a total step back and stop test yet.

    However I admit I have been less regimented in the last few weeks and so in a haphazard way am perhaps weaning myself down again... No major changes one way or the other through it all....

    I really hope you find something that makes a big difference to your state of health. I know we are all doing our own searching and favouring our own approaches (I've given up grains, and swear by probiotics.... despite the fact that I have little supporting evidence from my sample of one for this either!)

    Thanks for sharing all this information. It needs slow digestion! ;)

    1. Thanks Sally. In some sense I think it's reasonable that we all try our own different treatments and paths because it seems that while we all have a core group of symptoms that make us ME/CFS, we're all also dealing with different etiologies and different co-morbid conditions. But it still helps to get ideas of what is working and what isn't from our fellow patients, especially those who have similar symptoms.

      Thanks again for your comments.