2014 - My Health in Review

2014 saw significant improvement for me again.  Based on an average of all 365 days of my daily health chart, my daily health rating went up almost four percentage points from 2013. (And 2013 was over 5 points higher than 2012).  So clearly I'm headed in the right direction.  Of course, this all assumes that my ratings system stays consistent over time, (which I think it has--I use certain benchmarks to ensure that--but it's hard to be 100% certain.)

On my daily health chart, besides giving myself a daily overall health rating, I keep track of what I call my "big three" symptoms, each on a scale of 1-10:  (1) flu-like inflammation & fatigue, (2) air hunger / shortness of breath, and (3) kidney-area flank pain.  In 2014, only 26 days out of 365 recorded any flank pain whatsoever (7%), and no entry for flank pain was over a 4 out of 10.  

So when I created a new spreadsheet for my 2015 health chart, I eliminated the "flank pain" column.  Ah, but ME/CFS giveth and taketh away.  I had to replace that column with a column for prostate pain, as that seems to be my new nemesis.  Consistent with what many other ME/CFS patients have written online, it often seems as if the pain and inflammation associated with this disease simply migrates around the body, camping out in one area for a few years before mysteriously moving onto another area.

My 2013 year-end review, posted last January, said that maybe 2014 would be the year that I started to cut back on supplements and see which ones I truly need.  Well, that hasn't happened yet, for various reasons, but I'm renewing that goal for 2015.  I'll be starting work with a new doctor soon, and she has promised to help fine-tune my supplement routine.  

As I wrote about a few weeks ago, I quit Dr. Yasko's program after almost two years of experimentation.  I'm going to continue with a few "short route" methylation supplements for the time being, but have stopped experimenting with vitamin b12 and "long route" supplements.  They simply haven't worked out no matter how slowly I titrate, or how small a dose, or how long I gave myself to push past "start-up reactions".  I mean, yes, I can take a molecule of B12 and be OK, but any substantial dose whatsoever brings on nerve inflammation and brain fog.  So I'm done experimenting.  It doesn't seem that I really need methylation to make improvements right now, so why keep messing with it?   

Overall, 2014 saw a large return of functionality for me, in ways that just weren't possible a year or two ago.  I still have a long way to go, and I realize that the trend could reverse at any time, but for now I'm just trying to enjoy every day in which I don't feel like I did a few years ago.   

No More Methylation Experiments

I started experimenting with Nutrigenomics and Amy Yasko's methylation protocol almost two years ago, in March, 2013.  Prior to that, I had dabbled in a couple "simplified" methylation protocols without much success.  I knew that I would never get the idea of methylation protocols out of my system until I tried the full protocol.  I decided to go "full Yasko."

Now, almost two years later, I'm at a point where I'm ready to end the experimentation.  I wouldn't exactly call all the experiments a success, but I wouldn't call them failures either.  I was able to see some improvements implementing what Yasko calls "short cut" supplements, but not "long route" supplements.

Quick review:  Dr. Yasko theorizes that there are two chemical pathways by which the body's methylation cycle--an important detoxification system--works.  The short cut is a simpler chemical process that results in some detoxification.  The long route is more complicated, but results in more significant detoxification.  Dr. Yasko recommends that patients implement the short cut first, then concentrate on the long route.

(My full journey with methylation protocols can be read by clicking the "Nutrigenomics" tab in the right hand column.)

I don't think anybody could claim that I failed to put enough effort into the process.  I started with genetic testing through 23andMe, tested my hair and urine regularly, and worked with Yasko's web resources to tweak my supplement levels--all while trying to find the perfect combination of supplements to trigger the methylation cycle in just the right way.

I had some success with short cut supplements, including the use of a supplement called Phosphatidyl Serine Complex, or PS Complex, or PS/PC/PE. This supplement seemed to help reduce brain inflammation and reduce the dreaded "brain fog."  I still take this supplement and the other "short cut" supplements today.  I plan to continue taking them.

When it came to "long route" supplements, I could never quite get it right.  The cornerstone of long route supplements is vitamin B12.  Whenever I added Vitamin B12 to my regimen, I would experience increased levels of brain and nerve inflammation.  I would endure increased "brain fog" and hand, foot and leg numbness and uncoordination.  Each time this would occur, I would back off of B12 and start over, always going "low and slow" as Dr. Yasko recommends.  (This means starting with very low doses, and increasing very slowly).

My genetic results suggested that the "active" forms of B12 (methylcobalamin and adenosylcobolamin) would be problematic for me, so I concentrated on other forms.  But it seemed no matter how slowly I titrated and no matter what forms of B12 I used, I couldn't avoid feeling worse while taking B12.

I also don't think the problem was that I failed to stick with it long enough to move past initial start-up reactions.  After each failed attempt, I would take a new run at it.  For the most part, I would continue with each new B12 run for 3 to 4 months before backing off and trying again with a new combination.

So I've now come to the conclusion that, for unknown reasons, methylation protocols involving vitamin B12 simply aren't for me.  My body chemistry doesn't seem to want to have anything to do with vitamin B12, other than in the smallest doses found in regular multivitamins.

So I plan to stick with short cut supplements, but stop experimenting with long route supplements, at least for the foreseeable future.  I am changing doctors after the new year (moving on from Dr. W.), and my new doctor has experience guiding people through methylation protocols.  I won't rule out the possibility of returning to methylation protocols in the future, under the guidance of my new doctor.  But I think for now, we have other things to work on first.

Doubling down on Methylation

I started Dr. Yasko's methylation protocol in about March of last year.  Yasko recommends that patients implement supplements in phases.  She stresses they be implemented in a specific order and then results confirmed with tests before moving on to the next phase.  So it took me over six months just to build up to the point where I could start actually taking methylfolate and B12.

I took a step up in baseline before I ever even started taking B12.  The "step up" occurred in about September last year after I implemented Yasko's "short cut" supplements - mainly PS Complex and DHA.

I didn't really notice much of a difference after I finally added B12 and methylfolate, but I continued to do relatively well.

Toward the end of 2013, I moved residences and lost focus on methylation.  I continued to take the supplements, but didn't monitor my health as closely.  I stopped reading and learning about nutrigenomics, and stopped paying attention to how missed doses affected me.

In February and March this year, brain fog and limb numbness returned after an absence of about a year.  By accident, I noticed that on a couple of days where I forgot to take B12 and methylfolate, the brain fog and limb numbness disappeared again.  So it became clear that I was over-methylating - the methylation cycle was working too fast.

Now I'm off the B12 and methylfolate again (temporarily) and am going to figure out where things started getting side tracked.  At some point I unknowingly switched from taking the hydroxycobalamin form of B12 to methylcobalamin, which can be problematic for CBS+ persons like myself.  This may be why I was overmethylating.

As part of my re-dedication to methylation, I decided to read Yasko's new book, which supposedly makes complicated nutrigenomics a little more accessible.  I'll review it in a later post...

Low potassium confirmed

Last week I wrote a post about how I had used my daily health chart to solve the mystery of a mysterious crash.  I had pinpointed the cause to low potassium.

This week I received the results of a Urine Essential Elements test, which I submitted to Dr. Yasko in early March. Written all over the results, in Dr. Yasko's handwriting, was "Potassium is needed" and variations on the same.  It was nice to have that official confirmation.  I was right.

I'm reminded again that, while these various supplement and treatments help, they require a careful balance that has to be monitored periodically.  We're experimenting with "repairing leaks" and "patching holes" in ways that that simply don't have much history.  There's no manual.  Because of that, I sometimes feel like I have to treat my health maintenance like a job.  

Article on MTHFR mutation prevalence in ME/CFS patients

Since I have found a modest amount of success so far with methylation treatment (nothing dramatic, but noticeable) I'm always interested in articles from sources other than just Dr. Yasko about it.  Here's an interesting one from a website called MTHFRliving.com.

http://mthfrliving.com/health-conditions/chronic

My Health - 2013 In Review

I keep a daily health chart where I give my health an overall daily rating on scale from 0 to 100%, where 0 is dead and 100% is how I felt on my absolute worst day before getting ME/CFS.  (So far I haven't cracked 100 since getting ME/CFS).  At the end of each month I average my scores to track my progress from month to month, and I do the same from year to year.  I have a pretty good system of benchmarks to ensure that my rating system stays objective and doesn't skew over time.

The year 2013 was about five percentage points higher than 2012.  This is an enormous improvement for me.  

Of course the trick is to determine what caused this improvement.  That is a very difficult and complex question.  In many ways, the answer is unknowable given all of the treatments I've tried.  I can only offer my best guesses based on intuition and daily charting. But there's always the possibility (although I believe, slight) that I would have improved the same amount had I simply sat back and waited. 

I started Equilibrant in mid-2012 and have continued at a dosage of 6 tablets per day throughout 2013. I believe that it has continued to help me improve.  I have not yet experimented with backing off the dosage, but there have been days where I have forgotten to take Equilibrant and felt (I believe) worse because of it.

Second, starting in about March or April I charged aggressively into Amy Yasko's full methylation protocol.  I submitted urine testing, I analyzed my genetic results, and I was determined to give the protocol every possible chance to reveal if there was anything to the hype.  At the same time I tried to listen to and consider the critics.  

For those who are familiar with Yasko's protocol, she recommends a seemingly ridiculous number of supplements and they can be quite expensive, so I didn't take this decision lightly.  After starting the program, I quickly came to believe that the RNA supplements were ineffective for me so I stopped using them.  Although I started the program in March, it wasn't until October that I had all of Yasko's recommended supplements fully implemented—a seven month process.

I took a significant step up in baseline between July and August (about 3 percentage points) and I have more-or-less sustained that improvement since.  This improvement coincided roughly with adding Yasko's "short cut" supplements—before I even got to the methylfolate and vitamin B12 supplements—the cornerstones of methylation treatment.  So I believe there may have been a connection between Yasko's protocol and my mid-year improvement.  (For more on "short cut" supplements, see mid-way down this post. In summary, I believe it was the PS/pc/pe Complex that may have been responsible for the improvement.) 

More significantly, my brain fog went away almost completely at around that time and has stayed away since.  The improvement has been remarkable. After spending 2011 and 2012 mostly brain fog-free, I started to get brain fog on a daily basis in roughly the first half of 2013.  Although my energy levels and flu-like symptoms had improved, I was concerned that I had simply traded them for brain fog, which is maybe worse. 

Well, for whatever reason, and maybe it was the Yasko program, the brain fog is almost completely eradicated.  I still get it very mildly on occasion and for no apparent reason, but it is basically a non-factor since about August of this year.  In 2014 I plan to cut back further on some of the Yasko supplements and see if the brain fog stays away.

The other major change I made in 2013 was that I switched from testosterone cream to testosterone injections (self-administered) in early April.  While this may have contributed to the improvement, there was a 4 month gap between the start of the injections and the improvement, which makes is a little less clear.

I also moved residences in November and noticed that I have slept better over the past month and seem to have a little more energy in the mornings.  I'm wondering now if my old house may have had environmental "issues" that were bringing me down.  I'll report back if this improvement continues.  

I don't mean to give the impression that 2013 was all roses.  My weak immune system continues to ensure that I contract raging sore throats and a swollen tongue at least 4 times a year.  Despite my best efforts, I couldn't avoid having to take antibiotics twice this year.  I'm working now on restoring my gut flora yet again with a probiotics regimen.  

Additionally, I welcomed a new symptom in the Fall of this year—crippling groin pain and prostatitis—bacterial infection of the prostate. It's unclear if this is related to ME/CFS, but I suspect my weak immune system played a role.  I am feeling better "there" now but my urologist says that once infected, I will always be more susceptible to repeat infections.   

Looking forward to 2014, this may be the year that I begin to actually reduce the number of supplements I take in order to determine which ones have actually contributed to my improvement and which ones may be less effective. 

Thanks as always for reading, and I wish you all improved health in 2014. 

Update on Nutrigenomics Treatment

Review

Back in March of this year, I began a nutrigenomics plan to address the defects in the "methylation cycle" that appeared on genetic testing.  The process started with getting genetic testing from 23andME for $99, followed by running the results through a website called Genetic Genie, which analyzes only those specific genes that have been identified as affecting the methylation cycle - one of the body's detoxification systems that has been shown to be defective in ME/CFS patients.  Then, after reading the book and online forums of Dr. Yasko, I implemented a "nutrigenomics" plan to try to address my specific methylation cycle defects.

In the intervening 6 months, I have submitted a couple of urine and hair sample tests, which can be submitted via mail through Dr. Yasko's company.  The point of these tests is to further refine which supplements to take and in what amounts to address methylation issues.  In addition, there are a couple of home urine tests that I conduct on a weekly basis to track progress (more on that below).

Update

These methylation supplements have taken longer to implement that I predicted at the outset.  I would have thought I'd have implemented all the supplements within a couple of months of when I started, but as it's turning out, I'm still in the middle of the process six months later.  The process is supposed to unfold in at least 3 steps.  First, you change your diet and add a series of "basic support supplements" -- these are supplements like multivitamins, magnesium, zinc, Vitamin-D, and different types of antioxidants.   I was done with that step by April and didn't notice any difference in how I felt, but didn't expect to either. 

Then before the next step, you're supposed to address "first priority" genetic mutations, if you have them.  I have one of them -- a so-called "CBS mutation," which leads to an excess build-up of sulfer and ammonia in the body.  So this requires reducing protein in the diet (which I only did very slightly) and taking a couple of supplements that flush the body of excess sulpher and ammonia.  I could track the progress of this with home urine sulfate tests, which eventually showed when I was ready to move on.  

Finally in about July, I was ready to move on to addressing the actual methylation cycle defects.  This step is broken down into two phases.  Dr. Yasko describes that the body has two ways of making the powerful antioxidant glutathione -- which is the end result of a functioning methylation cycle.  The first is a "short cut" chemical reaction, and the second is the "long route" chemical reaction.  If the methylation cycle is working properly, both routes are producing glutathione.  Dr. Yasko recommends that patients address the short cut first.  

I had the short cut supplements implemented by about early July.  These supplements include an phospholipid complex called, for short, "PS/pc/pe," and DHA (which I was already taking).  An optional third supplement was an RNA Supplement called "Methylation Support RNA." This supplement is expensive and there is some controversy about the efficacy of Yasko's RNA supplements, so although I tried it, I didn't renew when the bottle ran out in 3 weeks. 

By late July, I experienced a noticeable uptick in my health.  My daily health rating for August was the highest month yet by more than a 3% increase, which on my health chart system is a huge increase. Previous increases were typically small fractions of 1%.  So I'm wondering now if this PS/pc/pe complex was a key component of this improvement.  Of course, one month of improvement could be an anomaly, so we'll have to wait and see.  

In the mean time, I've started adding long route methylation supplements, namely the hydroxy- and adenosyl- forms of Vitamin B12, but there are other supplements to be added so it will be a while before I know these "long route" methylation supplements will help.   

Update on my new brain fog medicine

I don't even want to put the name of the drug in the title or first sentence of this post because that's when it gets picked up by Google and I start receiving unwanted hits from outside the ME/CFS community.

Now that we've dispensed with that space-filler, I can tell you we're talking about Adderall.  My first post about Adderall was here.

Yesterday I had another, more serious attack of brain fog -- one that would have crushed last Friday's brain fog into oblivion.  So this was a better test for the Adderall.  Again, I took only a quarter of a 20 mg tablet (for those that are math challenged like me, that's 5mg, which is a very small dose).

My impression is that Adderall isn't going to be the wonder cure to brain fog that I had hoped.  Granted, I took a very small dose, but something tells me a higher dose won't matter.  I didn't feel that the Adderall really cleared the brain fog or reduced the feeling of brain inflammation, rather, it simply made it easier for me to power through the brain fog and focus my thoughts in spite of the fog.  But whenever I took a break from whatever I was focused on and assessed how I was feeling, that tell-tale sense of brain inflammation was still there.  Somehow I don't think a higher dose will change that.

The best analogy I can come up with is, imagine that having no brain fog is like running on a flat hard surface.  Brain fog is like trying to run in 2 feet of water.  So I was hoping that the Adderall would take the water away.  Instead, it simply built up my leg muscles so that it became easier to run through water, which is of course helpful, but not nearly as good as if the water were gone.

I'd be curious to hear from any other ME/CFS patients who have taken Addy if your experiences were the same.

                                                            _________________

For now I think my best bet for clearing brain fog is to get back on Vitamin B12.  I hardly ever had brain fog issues during the 9 months that I was on a B12 protocol previously (Fredd's protocol), and it only started creeping up after I stopped taking B12.  (Coincidence? Maybe, but B12 is the most oft-cited treatment for brain fog on the message boards, by my assessment.)

I'm just now finishing the preliminary steps and the "short route" supplements in Yasko's protocol, so I'll be adding B12 back into my regimen again soon.

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."  (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.

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.   

Conclusion

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.  

Need some optimism for a change?

The linked video offers a nice bit of hope for our chances of solving ME/CFS and other related neuro-immune diseases.  It basically says that medical treatment based on one's genetic profile is the future and has a good chance of leading to breakthrough developments.  While the video appears to be an advertisement of sorts for Dr. Kogelnik's Open Medicine Institute, it brings together some big names in the ME/CFS research world to comment on their hopes and goals for the future.

http://www.youtube.com/watch?v=bIX0kl2MRcY

Correct Dose of B12 for ME/CFS Treatment

For those of us taking Vitamin B12 as part of their ME/CFS treatment, it's always difficult determining the exact right dose (not to mention the right combination of forms of B12).  I recently stumbled on Dr. Rich VanK's explanation of why the dose needs to be at least 2000 to 2500 mcgs to see results. Quoted here in full:

Hi, all. 

The above question has been around for quite a few years, and we haven't had a good answer for it. I think it is now possible to answer it, based on some recent research in Korea. 

Here's some background: In the 1990's, Drs. Charles Lapp and Paul Cheney initiated treatment of their CFS patients by injection of vitamin B12, after observing that many patients had elevated homocysteine or methylmalonate in urine testing. They found that there was a threshold of response at between 2,000 and 2,500 micrograms per injection to produce an improvement in energy, stamina or wellbeing that lasted for two or three days. Lower dosages did not appear to produce improvements. This was puzzling, because the recommended daily allowance (RDA) for vitamin B12 in adults is only 2.4 micrograms per day. Why did the dosage need to be so high to produce improvement in symptoms?
As many of you know, the sublingual hydroxocobalamin dosage in the Simplified Methylation Protocol today is comparable to the injected dosages that Drs. Lapp and Cheney found to be necessary, still very high compared to the RDA dosage, and this question has remained. (I note that high dosages of B12 are also used in autism, which shares much of the same pathophysiology with ME/CFS.) 

O.K., in 2011 a paper was published by two researchers in Korea, Jeong and Kim. The abstract is pasted below. 

The research they report was actually done on a bovine (cow) B12-processing complementation group and cyanocobalamin. However, the human complementation group is very similar, and I suspect that the results will also be similar for other forms of B12 than cyanocobalamin. 

They studied the CblC complementation group. This is part of the B12 processing pathway that is found inside all cells. When a form of B12 comes into a cell from the blood by the usual transcobalamin route, it is bound to CblC, and its beta ligand (cyano-, methyl-, or adenosyl-) is removed. Then it is sent on to be converted back to methylcobalamin or adenosylcobalamin as needed by the cell.

In order for this processing to happen, the CblC complementation group must first bind the B12 form. The strength of binding is called the affinity (Kd), and it is measured in concentration units. The higher the affinity, the lower the Kd. It turns out that the bare CblC complex has a relatively low affinity for B12, compared to the concentration of B12 in the cells, and this would be unfavorable for the necessary binding, and would tend to lower the reaction rate. 

What these researchers found is that normally glutathione binds to CblC, and in doing so, it increases the affinity of CblC for B12. And it does so by a whopping amount--over a factor of a hundred!! 

Turning this around, if glutathione becomes depleted, as in ME/CFS and autism, the affinity of CblC for B12 is going to drop substantially. I suggest that the glutathione depletion, combined with its major effect on this affinity, is the reason the B12 dosage must be so high in treating ME/CFS and autism.

Best regards,
Rich

[Citations omitted]

Back when I tried a methylation protocol for the first time, I was taking about that amount (if not more at times), but never really showed much improvement over 8 or 9 months.  In fact, the only thing I experienced was symptoms of overmethylation.  But I think that was because I had the wrong combination of forms, focusing too much on methylcobalamin.  Now that I have genetic testing results showing CBS and BHMT mutations, I know that I probably have trouble with excess methyl donors. While I haven't yet reached the stage of Yasko's protocol where B12 is added in, this time I'm going to work on taking a good mix of hydoxy- methyl-, and adenosyl- cobalamin.

Treatment and Personal Update

Rifampin:  As I described in this post from March, Rifampin is an antibiotic that also has antiviral properties which have helped a number of ME/CFS patients improve dramatically, according to one of my doctors, Dr. C.  Dr. C advised me to take Rifampin when I had time off of work because, if the drug had it's intended effect, I would undergo strong flu-like symptoms.  The idea is that the flu is supposed to "kick the immune system back into regular functioning."

This past week, I took time off of work to bond with my new daughter, so I also seized the opportunity to take the Rifampin.  So far, nothing has happened.  If something was going to happen, it's supposed to happen about 7-14 days after beginning a week-long course of the drug.  I began taking Rifampin about 10 days ago and finished 3 days ago.  It doesn't feel like anything is going to happen, but I wasn't holding my breath anyway.

Nutrigenomics:  I'm still implementing Step 1 (Basic Supplement Support) of Dr. Yasko's plan, and taking my time with the process.  Trying to be patient.  In the meantime, I received results of a blood ammonia test which confirmed that I have high serum ammonia levels (the highest number it can be without being out of range.)  This is more confirmation that I have the CBS & BHMT mutations, so I hope to use these results as further motivation to stick with the Yasko protocol.  The protocol is somewhat expensive and a hassle to track, but when I put all of the evidence together, it seems abundantly clear that my methylation cycle is deficient and needs to be treated.  (For background on this, see the Nutrigenomics tab on the right-hand side of the page).

Personal:  Having a second baby around the house certainly has not been easy, but at the same time, it has not been as difficult as we had been lead to believe by others.  Some of our "couple friends" had cited the mantra that 2 kids somehow equals 3 times the work.  So far, it hasn't been that bad.  Of course, it's been harder on my wife because she's the one who stays awake half the night breastfeeding, but even still, she agrees that it's been about as much extra work as we would have expected--that is, about double.

Right now, 3 of the 4 of us have colds, my wife being the only one that was spared (so far.)  It's hard to see my newborn daughter struggle to breathe through a stuffy nose, but there isn't much we can do but wait and occasionally use a rubber-bulb nasal aspirator.  As for myself, I started attacking the cold with zinc, liposomal vitamin C and thymic protein at the first signs of symptoms (5 days ago), and I truly believe these treatments worked.  Some cold symptoms still linger (sniffles & slight cough) but it doesn't seem to be making me feel much worse.

In the meantime, I returned to work yesterday and learned that one of my cases is likely to go to trial in mid-June.  I had sought a continuance, and had very good reasons to support this request, but the judge inexplicably denied it.  This means that the next two months will be insanely busy, and that I will have to conduct a two-week federal jury trial with millions of dollars at stake.  This upcoming trial makes the last trial that I wrote about in February seem like a mere traffic court hearing.

My firm has already determined that I will act as lead counsel for the trial, but the good news is that I will have a second attorney helping me.  If I have a crash in the middle of trial, I will have to "power through" somehow, but it is also nice to know that I have backup.  What I'm more concerned about is the large volume of work and long hours that are ordinarily required to prepare for trial.  I've asked the firm for extra support and "manpower" so that I don't have kill myself just getting to trial.  Before ME/CFS, I might have tried to handle it all myself, working 14 hour days and weekends. Now, no.

With two sick babies at home and a major trial on the horizon, it's unlikely there will be many times in my life as chaotic.  But a few years ago, this trial might have made me more anxious.  The combination of having kids and getting ME/CFS has given me perspective about what's most important.  Of course, it's always easy for me to sound calm when, as now, I'm feeling fairly decent today.  Let's see how I feel when it's, say, 3 days before trial and I'm in the middle of a crash.  When I'm at my baseline, it's often hard for me to imagine ever crashing again, until I do, and the cycle starts over.  For now, I try to focus on the sense of accomplishment I will feel when the trial is over.

Digestive enzymes = crash?

Over the last couple of weeks, I have been dutifully taking various Basic Support supplements from Yasko's protocol, adding a new one each 3 or 4 days.  So far, I've added pyconegol, General Inflammatory RNA support, Adenosyl, and the general multivitamin called Neurological Health Formula.  Everything has been going well...until today.

I added digestive enzymes this morning, taking only 1 pill (2 are recommended).  Within a half hour it was clear that I was spiraling down into a very bad crash with nausea, brain fog, and neuro symptoms in the legs and arms (numbness and incoordination).  The crash has lasted all day and shown no signs of letting up.  In fact, I'm struggling to type this because of the neuro symptoms.

Ordinarily, I would have left work and gone home but I have a deadline this week and simply couldn't miss work today.  Frankly, it was miserable.  Trying to concentrate when my brain is fighting against me is not fun.  Worse is trying to act normal with my cooworkers when they are attempting to discuss complicated topics with me.  I put on my best business face and did the best I could.  I'm not sure if they noticed anything was wrong, but I wouldn't be surprised if they did.  At times, it was clear that I wasn't making much sense.  

Hopefully if I stop taking the digestive enzymes, these symptoms will disappear quickly.  But of course, I can never be 100% certain of the cause of any crash.  There's always a few other suspects hanging around, creating doubt.  Could this be delayed effect of the adenosyl, i.e. hypokalemia? Or just a crash from the hectic activity of the last few days?

I'd be interested in hearing from anyone else who had a similar experience with digestive enzymes.  I'm not even sure exactly why Dr. Yasko recommends them, so I'll have to research that issue as well.

Thanks for reading today.  

Nutrigenomics: Addressing CBS & BHMT mutations

In this post, I compile a list of six clues to determine if CBS & BHMT mutations are an issue for those of us who have heterozygous CBS & BHMT mutations and, therefore, aren't sure if we are up-regulators.  This list is compiled from Dr. Yasko's book and the Methylation section of the Heartfixer website, where each clue is mentioned in different areas, but never compiled as a list .

For those of us that decide to go the nutrigenomics route to treating ME/CFS, one of the first problems we encounter is deciphering whether CBS & BHMT mutations are problematic. These two mutations are up-regulations, leading to high levels of sulfate and ammonia.  As Dr. Yasko puts it, this up-regulation leaves the "drain open" meaning that any other methylation supports will go "down the CBS drain" if the CBS mutation is not addressed first.

If you are homogygous (+/+) for any CBS mutation, there is no question that you are affected.  But there's ambiguity for those of us who are heterozygous (+/-) for the CBS mutation, especially if it's the lesser of the two mutations: CBS A360A.  (Note there are also some people who believe that Dr. Yasko is incorrect and that CBS mutations are not important.  See posts #17-19 in this PR thread.)

Six Clues

Urine sulfate levels:  Urine sulfate levels can be tested at home using these urine sulfate test strips.  Ideally, you want your urine sulfate levels below 400, but if that's not possible, then below 800 is apparently acceptable. (Heartfixer, see Overview, #2).  Mine is testing around 800.  CONCLUSION: SLIGHT PROBLEM.

Blood ammonia levels:  If blood ammonia levels are high or high-normal, it tends to indicate CBS or BHMT issues.  Mine tested at the highest possible number without being out of range: 47 (normal range is ≤47 µmol/L.  CONCLUSION: PROBLEM

Sulfur Tolerances:  If someone has a CBS and/or BHMT mutation, supposedly they will not tolerate sulfur well.  This means they will have an adverse reaction to foods or supplements containing high sulfur.  For me, I have never noticed any adverse affects from eating eggs, broccoli, and other foods high in sulfur.  (It's not clear what the adverse reaction would be).  Also, I underwent a heavy metal detoxification protocol last September using DMSA, which contains high amounts of sulfur.  I did not have any adverse reactions.  CONCLUSION: NO PROBLEM

Blood homocysteine levels:  Supposedly, the CBS mutations usually lead to low or low-normal levels of homocysteine.  I've never seen "low" defined, but optimal levels are considered to be around 6 to 7, so "low" is obviously below that.   Mine, when tested last in December, 2011, was 9.1, which is within range, but above optimal.  (Reference range is <14.4)  This might suggest that I don't have CBS or BHMT mutation issues, except for the fact that I have other mutations SHMT (+/-), MTR A2756G (+/-), and MTRR A664A (+/+) which lead to high levels of homocysteine.  So it's possible that these other mutations are counterbalancing the CBS up-regulation.   CONCLUSION:  UNCLEAR

Which CBS mutation?:  As mentioned above, the CBS A360A is the least severe of the CBS mutations, leading to only about 1/40th the amount of up-regulation as the CBS C699T.  Further, if you are heterozygous (+/-) like me, it's not clear if that particular mutation is "turned on."  CONCLUSION: UNCLEAR

Combinations of mutations:  Someone who only has a CBS mutation or only has a BHMT mutation is less likely to have a problem than someone who has both.  Personally, I am heterozygous for CBS A360A and 3 of the 4 BHMT mutations: 2, 4, and 8.  (1 is not tested by 23andMe).  CONCLUSION: LIKELY PROBLEM

Conclusion

It's still a little unclear, but to be safe, I'm going to assume that I have a slight to moderate issue with CBS up-regulation, and cut down a little on the highest sulfur foods, but I won't radically change my diet.  I will also supplement with Yucca and charcoal flushes before proceeding to the next phase of the methylation protocol.

[updated 5/23/13]

[5/28/13]  This thread from Phoenix Rising provides some interesting feedback from other users trying to   treat CBS and BHMT mutations.  

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]

How important is heavy metal detox?

After nearly completing Dr. Yakso's book, I'm wondering if I underestimated the importance of heavy metal detox in recovery from ME/CFS and other neuro-immune conditions.  Dr. Yakso seems to think it plays a major role.

Back in late November, I wrote about the improvement I experienced beginning in early October, and which mostly continues even today.  I attributed that improvement to the FIR sauna, mainly because it was the nearest major change in my treatments.  Now I'm seriously questioning if the DMSA-based heavy metal detox regimen that I did in September wasn't a factor.  I'd previously disregarded the importance of heavy metal detox because I simply didn't know much about it.  I had reluctantly agreed to a month-long detox protocol only at the insistence of Dr. W. 

It's interesting to note now that the heavy metal detox was even closer in time to the beginning of my improvement.  Whereas I started the sauna treatments in early August, I began the heavy metal detox in early September and completed the protocol just as my improvements were beginning in early October, 2012.  Coincidence?  

I'll eventually learn more about how critical the detox protocol was to my improvement.  According to Dr. Yakso, there is much more detoxification to be done.  So if I try again and I improve even further, I'll have a better understanding.  But, since all of the steps in Dr. Yakso's plan must be implemented in a certain order, I won't get to the heavy metal detox again for many months.

If anyone is interested, below are the ingredients of the detox supplement I took last time (along with a multi-mineral, which is essential to replace beneficial metals that are also excreted in in the process.)  It's mostly a DMSA and EDTA-based detox.  

On a mission

Do you ever get in one of those cycles where you're sort of reinvigorated to research treatments?  Ever since I started reading Dr. Yasko's book on methylation treatments, I seem to have caught a 'second wind.'  I wish I could stay home from work today and spend all day finishing the book and organizing a step-by-step plan to implement Dr. Yasko's treatment program, tailored to my genetic results.  When I catch on to something that I truly believe will help me take another step toward improvement, it becomes hard to get it out of my mind.  I'll write more on it later, but I am convinced that methylation (or lack thereof) is a key to improved health for me.

I'll explain why soon....

Got my 23andMe results

I received my 23andMe results yesterday.  For those that don't know, there is a company in Mountain View, California, called 23andMe, that has widely commercialized genetic testing.  For $99 they will send you an empty vial by mail.  You spit into the vial and mail it back.  Within about 30 days, they provide a detailed breakdown of your genetic composition.  You can use a secure online account on the 23andMe website to interpret the information and receive a personalized breakdown of various aspects of your genes.

23andMe is being used increasingly by PWMEs to guide their treatment.  But before we get into that, let's discuss a few other interested features of the service:

General Interest...stuff

There are many different reasons people use 23andMe.  Some are interested in their ethnic background.  One can, for instance, determine if her family's claimed ethnic background is accurate.  This topic happens to be a source of debate on one side of my family, so it will be interesting to delve into the details and settle the dispute once and for all.

If distant (perhaps, unknown) relatives have used 23andMe, the service will connect you with them, as long as you and the relative have both enabled that option.  

Another feature is that clients can learn what percentage of their DNA is Neanderthal.  About 30,000 to 50,000 years ago, modern humans existed side by side with their closest hominid species, Neanderthals.  (Neanderthals are classified as a subspecies of homo sapien, so technically, we are the same species.) These two races of humans were running around Europe competing for resources for tens of thousands of years before the Neanderthals went extinct about 30,000 years ago.  Apparently there was some interbreeding in the mean time, the traces of which survive in modern humans' DNA.  So most modern humans are between 1% and 4% Neanderthal.  The average 23andMe user is 2.5%. 

It turns out I am 3% Neanderthal, which puts me in the 96th percentile!  When I told my wife, she couldn't stop laughing.  Apparently, many many aspects of my personality suddenly make sense. Frankly, I'm not surprised either.  It's no wonder I adopted the paleo diet so enthusiastically.  I'm practically a caveman.  

Does anyone remember the old Saturday Night Live skit called "Unfrozen Caveman Lawyer"?  That's me.  I use my caveman common sense to appeal to the jury's simpler sensibilities   

Picture from http://motivationalpostersonline.blogspot.com/

Another reason people sign up for 23andMe is to discover what disease predispositions they may have.  23andMe tests for dozens and dozens of predispositions.  It turns out I have a slight predisposition for type 2 diabetes.  Apparently, 25.7% of males of European descent will develop type 2 diabetes between the ages of 20 and 79.  My odds are slightly higher, at 32.2%—about 6.5% increased risk. 

But genetics are only a part of the equation.  According to 23andMe, environmental factors, such as diet, play a larger role.  So here comes the good news: the lifestyle changes I've made because of ME (and I'm mainly talking about diet here) should help ensure that I don't get diabetes.  So if I ever needed to find the thinnest of silver linings in my struggle with ME/CFS ... BAM, right there.  

The other two diseases of which I showed a slight increased risk (and, here, we're talking about a tiny fraction of a percent) are Restless Leg Syndrome and Multiple Sclerosis.  But since there's nothing I can really do to help stave off these diseases, I won't worry about them.

Epigenetics for PWMEs

The main reason people with ME/CFS get genetic testing is to guide their supplementation and other treatments.  This is sometimes referred to as epigenetics or nutrigenomics.  One brilliant, enterprising person has created a website and program that will upload your 23andMe raw data and provide you with an explanation of all of your genetic mutations (SNPs) that affect your methylation cycle—the body's detoxification mechanism that appears to be broken in most PWMEs (as well those with Autism, Fibromyalgia, Lupus, Chronic Lyme Disease, and MS).  The website is called Genetic Genie. 

My Genetic Genie results are here. 

Truthfully, the Genetic Genie results merely scratch at the surface of the treatment protocol necessary to address these issues.  This will take months and months of additional research before I develop a plan to address these genetic mutations.  The good people at Genetic Genie recommend that you study your specific SNP using two sources: a website called heartfixer.com and Amy Yasko's book Austim: Pathways to Recovery.  (And of course, they say you should consult a doctor, *wink, wink*).

Apparently, one must not only identify the correct supplements to address his/her genetic mutations, but the supplements must be implemented in the correct order.  It all seems overwhelming right now, but I plan to take it slowly and do it correctly.   

As the Genetic Genie results explain, we were most likely born with our genetic mutations.  We cannot change them.  But, it is possible, through lifestyle changes and nutrition, to change the way genes are "expressed," minimizing the effect of these mutations.  

I still have many unanswered questions about how genetics and the methylation cycle ties into the immune defects common in PWMEs.  They are apparently connected in some way, I'm just not clear how. 

The good news for me is that I can (hopefully) stop guessing which nutritional supplements to take in what amounts—that is, after all, the point of epigenetics.  I could have spent years experimenting with these supplements without even coming close to the right combination.  Now I have specific genetic information to guide me.  

So this is the beginning of a long journey.