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." (DCNutrition.com)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.
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.