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, March 3, 2013

My nutrigenomics plan

I finally finished reading Dr. Amy Yasko's book Autism: Pathways to Recovery and am ready to start implementing a nutrigenomics plan tailored to my genetic polymorphisms (SNPs).  This will be  a long process that could take several years, so the plan will likely evolve as test results come in and I measure my progress.  For that reason, I'm keeping this outline general for now, allowing for flexibility.

I should quickly explain for those who aren't familiar with Dr. Yasko why I'm following an autism recovery plan for ME/CFS.  Oddly enough, studies show that children with autism and adults with ME/CFS generally have the same or similar genetic polymorphisms causing a block in one of the body's key detoxification systems, called the methylation cycle.  How these same SNPs could lead to such different conditions is unclear.  But Dr. Yasko studied ME/CFS and other neuro-immune illnesses prior to her work with autism and, throughout her book, she speaks to both parents of autistic children and adults with ME/CFS.

I happen to know that my methylation cycle is broken because I've had it tested. [Results here]  I've also had the 23andMe genetic test, which also shows some of the SNPs that are common in people with a broken methylation cycle.  And recent blood tests results show that I now officially have marcocytic anemia (red blood cells are oversized), indicating a body starved for vitamin B12.

I've tried supplementing large doses of vitamin B12 previously on a simplified methylation protocol (Fredd's protocol) but it didn't seem to do anything for me.  After reading Dr. Yasko's book it's clear why.  Until I fix another SNP that's further upstream, all the supplements I take will simply pour out the "CBS gate."  When I say "fix" I don't mean that I can change my genes (that's impossible), but it is possible to change the way genes are expressed and thereby work around those defects.

To put this plan together, I made the binder pictured below with tabs for 1) My 23andMe / Genetic Genie results, 2) Methylation Pathways Panel results, 3) a printout of the Heartfixer.com section on methylation cycle nutrigenomics, and 4) a printout of Dr. Yasko's entire book.  I know this probably seems like overkill, but this topic is so complicated that I needed to get as organized as possible if I wanted to have a shot of understanding it.



So with that, here's the plan I've put together based on Dr. Yasko's book and my specific SNPs:

[Warning: Much of what follows is notes to myself, posted here because this is where I keep all my health notes.  It may of limited  or no interest to other PWMEs, unless you happen to have my same SNPs.]

Step 1 - Preparation, Diet & Supplemention


Basic Supplement Support (selected from list on p. 79):  Neurological Health Formula, Nerve Calm Inflammatory Pathway Support RNA, General Inflammatory Support RNA, Magnesium, Zinc, Vitmin D-3, Cod liver oil, OraKidney + Kidney Inflammatory Pathway Support RNA (a few times per week), Pycenogol, Grape Seed Extract, Vitamin C, Probiotic, and possibly GABA.    

Eliminate Excitotoxins (Foods that Damage Nerves) from Diet:  See list on page 99-100 and 101, especially guar gum, malted anything, maltodextrin, "natural flavors," soup base, soy protein, stock, whey protein concentrate, glutamate, aspartate, aspartame, L-cysteine, canned soup, egg substitutes, flavored teas and sodas, gelatin, mayonnaise, xanthan gum and other "gums," and foods that are high in glutamate, including: soy, mushrooms, tomatoes, parmesan cheese, yeast, milk and wheat. 

Promote Healthy Digestion: Rotate probiotics daily and continue addressing candida.  Other than that, not much more is needed here because I pass most tests listed on page 113.

Step 2 - Optimizing Methylation Cycle

Part 1

Mineral balance:  Make sure minerals are still balanced.  Possibly take a UTM test.  (p. 188).  Keep calcium levels low to normal because calcium stimulates excitotoxin activity.  

Addressing SHMT (+/-) and ACAT (n/a) mutations: These are first priority mutations that suggest a greater likelihood of retaining aluminum.  Supplement lactoferrin and Acti-Folate and possibly some adenosyl B-12.  See pp. 128-129.

Addressing CBS mutations:  I am +/- for the CBS A360A mutation, and negative for the other 2.  This is the least severe form of the CBS mutation.  With this mutation, the "gate is open" sending all nutritional support out the open gate unless addressed first.  Do this for at least 4-6 weeks before adding any other methylation supports, (p. 130) then continue to follow the CBS recommendations long-term.  Take: Ammonia support RNA, cut down on animal proteins, limit foods with sulfur (p.133), supplement Yucca with every meal with protein, and do one or more charcoal flushes per week.  p.131.  Also limit amounts of CoQ10 and Alpha Lipoic Acid.  p. 157.

*Note: Yasko's theory about the importance of CBS mutation and, particularly, the importance of limiting sulfer is controversial. See this discussion on PR, starting at post #16.  I've decided to cut down on sulfer slightly, but not too much.   My sulfate urine levels are already below 800, which is acceptable according to Heartfixer. 

Testing: Monitor molybdenum & manganese levels and taurine levels. p. 134. Test with sulfite and sulfate urine test strips. p. 138.

Addressing Second Priority Mutations:  

COMT V158M (+/-) and VDR Taq (+/-):  Since I am COMT +/-, I may or may not have a reduced tolerance for methly donors.  Supplement with hydroxycobalmin B12 cyanocobalmin B12, dibencozide (adenosyl) B12 and possibly methylcobalmin B12 too. 

MTR A2756G +/- and MTRR A664A +/+:  These mutations also indicate a need for B12 support. (See above).  Note Dr. Yasko prefers at least some of one's B12 to be absorbed through the gut with the help of IntrinsicFactor. p.145.

Testing:  Make sure cobalt levels are in line. p. 148.

MTHFR A1298C +/-:   This mutation contributes to low BH4 levels, which impacts ability to detoxify and limit ammonia, and allows aluminum retention.  p. 149.  Use low dose CCK support (1/8 to 1/ per day) with CCK support RNA.  p. 150.  

BHMT 2, 4, & 8 +/-:  Having these mutations can produce UAA test results similar to a CBS mutation. This reinforces the need for ammonia support (see above.)

Mitochondrial Support:  Maybe add idebenone and NADH to CoQ10 and ALA (but limited amounts of ALA due to CBS mutation). p. 160.

Glutathione Support:  Supplementing directly with glutathione can be considered at this point. But, it has never seemed to help in the past when I've received glutathione shots 2x from Dr. W.  Try again?

Part 2 - Increasing Detoxification

Metals Detoxification:  The following are all "if needed" treatments at this point:

Metals I program:  p. 176.

Metals II program:  p. 177.

Metals III program:  p. 178.

Metals IV program:  p. 179.

Immune Factors:  Use immune factors 1, 2, 7, 8 and possibly 9 and 10.  p. 181.


Step 3 - Remyelinating the Nerves

Try adding in SAMe, nucleotides and others from p. 192-192.  See also, Supports for Oxygenation and New Nerve Growth. p. 195.

[updated 5/23/13]

5 comments:

  1. Thanks for the post. Although I am getting much stronger, I have been waiting/looking for a 'next step'. I am going to get the book and see if it seems right for me!

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    1. I think that's a good call. If anything, you'll learn a lot about biochemistry and what's really going on inside our bodies. It's complicated, but fascinating too. Then you can make a more informed decision as to the 'next step.'

      Best of luck to you, anand. Let me know what you think of the book.

      Patrick

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  2. Thanks for revealing this Patrick! I will pick this up and start reading. Since brain fog/cognitive issues are equal to my fatigue, there may be a connection with what autisitic people feel to some degree. I have had some success taking vyvanse recently....cuts the cognitive issues down noticably. I read a small study that was performed on another site which indicated success to a point where a larger study will be conducted. With medicine advancing like it is, new treatments will keep coming. Which are legitimate will be the question. But, seeing what works from credible people like yourself is the best way in my opinion. I did call the oxygen treatment facility here in Minneapolis, and interestingly they mentioned that helf their patients are autistic, and that they gain relief from this therapy. Curious why.

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  3. Wish I had the brain power to do this myself. Ugh.

    A few notes on food sources of probiotics:
    Cod liver oil comes in a fermented version by http://www.greenpasture.org/public/Products/CodLiverOil/index.cfm
    Bubbies Sauerkraut is highly recommended if you aren't making your own: http://www.bubbies.com/prod_sauerkraut.shtml
    They also make various other traditionally fermented items such as pickles.
    You might also want to check out http://www.culturesforhealth.com/ They make starter cultures that can be used to make coconut milk yogurt and water kefir.
    Food sources of probiotics have both a higher bacterial count than you'll ever get in a pill and also more variety of the little buggers.

    As for myself, I just discovered that I've probably got SIBO and will be starting a nasty course of antibiotics shortly. However, this should reduce the CFS symptoms greatly so I'm looking forward to it.

    BTW, I found glutathione IVs to be much more effective than the shots. You can get a much higher dose in an IV because there is no pain involved.

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  4. Patrick, well, I'm a year behind you (you got on the ball so quickly with this stuff!), but I'm finally here. I got 23andMe results and methylation pathways results (I'm similarly low much it, but you and I are completely opposite on s-adenosylhomocisteine- mine was low) and I'm trying to read Yasko's book and PR links, but, honestly, my brain is fried. Yesterday someone on one of my FB groups posted a link to one of your blog posts and the lightbulb went off that I have to revisit all your nutrigenomics stuff now that I know what you're talking about. Omg, am I grateful to you that you wrote all this. Thank you! I was panicking over a low-meat diet after spending the last six months figuring out how to eat my high-meat, low-histamine diet. I have the same CBS ACC BHMT mutations as you and this helped clear my mind and make things less overwhelming. Also, referencing page numbers is very helpful. Get ready, I might be writing a lot of comments on these old posts.

    Baffled, if you read this, did you ever treat your SIBO? And how did it go?

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