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.

Why It's a Good Idea to Keep a Daily Health Log

About a year ago, I blogged about my daily health chart.  The short version: I use a Google Docs spreadsheet with my own custom categories (example).  Since then, I've often questioned whether it is worth the effort.  Remembering to log in daily and input data into a dozen fields is not easy.  I often lose my motivation and find myself playing catch up after a four or five day lapse.

Then I'm reminded why I do it.

For about 80% of my crashes, the cause is easy to determine.  Often my family is sick and I have the same symptoms.  Or I pushed too hard the day prior and I'm paying the price with PEM. 

It's those other 20% of crashes where the chart really helps.     

Starting yesterday, I hit an unexplained crash.  There were no symptoms of a cold or other infection. I hadn't exerted myself the day prior.  The only clues I had were the two main symptoms of this crash (every crash is a little different).  This crash had a particular type of severe brain fog (I can distinguish among types of brain fog) and actual leg pain, not just numbness, which is rare for me.  I knew this combination was familiar, but I couldn't remember what triggered it before.

I used the search function on the health chart to pull up other instances.  I discovered these symptoms happened twice before, although not since 2012.  In both prior instances, I had been experimenting with "Fredd's" methylation protocol, which calls for very high doses of active forms of vitamin B12.  A side of effect of this, as I learned at the time, is over-methylation which robs the body of potassium.  In both prior instances, I increased my potassium dosage and the crash dissipated.  I then remembered that I stopped taking potassium supplements about two weeks ago, thinking that perhaps I didn't need them anymore since I'm now taking a much lower dose of vitamin B12.

Following this hunch, I immediately went out and bought potassium tablets.  I took about 400mg in the parking lot of the supplement store.  It's now about 5 hours later and the brain fog is slowly lifting, while the leg pain eases away.  So it seems that even though I'm no longer taking high doses of B12, I still need to supplement potassium.

I think I'll keep charting....

[Update 3/24/14:  A week later I was proven right.  I received the results of a Urine Essential Elements test that I submitted to Dr. Yasko.  Basically, "low potassium" was written all over it.]

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

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.

My Methylation Panel Results

I finally received the results of my Methylation Panel blood test results.  This test measures the function of a person's methylation cycle: the body's biochemical pathway that is responsible for detoxification, immune function, maintaining DNA, energy production, and many other critical functions.  All of this occurs at a cellular level.

Increasingly, the function of the methylation cycle is being considered as one of the candidates for the biomarker of ME/CFS.  So far, nearly every PWME who has reported their results on Phoenix Rising has apparently shown a defective methylation cycle, whereas a control group will not show any abnormalities.

The only lab in the United States (at least that I am aware of) that performs this blood test is Vitamin Diagnostics in New Jersey.  I obtained a doctor's order back in March, then ordered the test tube kit to be shipped to me by Vitamin Diagnostics.  From there, I had to find a lab that would draw the blood and ship it to New Jersey, which I finally did in July, 2012.  Now, I've finally received the results almost a year after the process began!

The results are very consistent with other PWME's on PR who have taken the same test.  There is no doubt about it, my methylation cycle is broken.

The next step is to get back on a methylation protocol.  I was on Fredd's Active B12 protocol for most of 2012, but I didn't notice much of a difference while I was on it.  So I think I'm going to switch to the late Rich Van Konyenberg's Simplified Methylation Protocol.  Maybe I will run this test again in another year and see if my numbers improve.

[3/5/13 edit:  Before I had a chance to start the Simplified Methylation Protocol I read Dr. Amy Yasko's book so now I'm going to do the full, un-simplified protocol.  I'm convinced this might be necessary for me.]

My results are posted below.  All numbers in a box are outside of the reference range--i.e. abnormal.  My main conclusion  comes from the first two numbers.  The too-high Glutathione (oxidized) means that my body is suffering from oxidative stress -- it simply cannot eliminate oxidized glutathione efficiently.  This is why, I believe, even small amounts of exercise exacerbate my symptoms.

The second number (Glutathione - reduced) means that I am not producing enough glutathione, which simply indicates that the methylation cycle is broken.

For a full article on how to interpret these results, see Rich VanK's article on Phoenix Rising.

Lessons learned about 2 of my supplements: Ribose and SAM-e

My wife, baby, and I just returned home from a weekend at my parents' house.  My parents live about an hour's drive up the coast, which usually isn't too tedious of a trip for me (although I felt too sick to drive - my wife had to handle that part).  The original point of the trip was for me to attend a class reunion, but by the time we arrived at my parents' house, I was too crashed to attend.  But the weekend turned out fine anyway.  It's always gratifying to watch my parents fawn over their granddaughter.  I've learned that babies are as addictive as crack cocaine to grandparents.

When packing for the trip, I remembered all of my supplements except D-Ribose.  I usually take 5g of Ribose twice a day.  By the time Sunday morning rolled around, I'd missed two doses and was feeling a type of malaise that I hadn't felt since before I started taking Ribose back in November.  I was shocked at how quickly the effects set in.  It's scary to think that my ability to function on a semi-adequate level each day may be due to this one supplement. It's as if the Ribose, alone, is artificially propping me up enough to do my limited daily activities. 

When we reached home late Sunday afternoon, I immediately took 5g of Ribose and felt a return to "normal" within a half hour.  That will be the last time I forget to bring the Ribose when I leave the house!

The other revelation I had is that SAM-e is powerful, and needs to be taken with plenty of potassium.  I've been on Fredd's active B12 protocol since February, but had not added any of the optional cofactors, such as SAM-e, until last week.  Fredd is clear that one needs to watch his/her potassium levels when increasing dosage of B12, or when adding cofactors.  I thought I had covered my bases by increased my potassium intake by 400mg/day at the same time as the SAM-e.  This was clearly not enough.  Beginning Friday, I came down with the same neuro symptoms - the same crushing brain fog and muscles twitches - that I'd experienced when I first started taking B12 back in February.  So I backed off of the SAM-e and B12 yesterday, and increased my potassium intake, and by today the neuro symptoms had almost completely disappeard.  

Lessons learned.

On a hot streak!

Like a lucky gambler at the craps table, I'm on a hot streak, baby!  I've been feeling pretty healthy for the past week, and even found myself dancing in the kitchen this morning. Now that I'm feeling a little better, I've returned to practicing a yoga-like stretching routine in the mornings, which I used to enjoy on and off before ME.  I haven't experienced any post exertional malaise from the routine, so I plan to continue with it, and maybe work some light weight training into the mix.

 I've also started taking the antiviral Famciclovir (generic for Famvir) and haven't experienced any start-up reactions.  Like most anti-virals, Famciclovir works by preventing the viruses (in my case, EBV and HHV-6) from replicating and infecting new cells.  It does not actually kill the viruses, so it's not likely one will see exprience short term results from Famciclovir. (See Dr. Lerner article, at Section II.)  The benefit from Famciclovir comes as the cells that are already infected with the virus die off and are replaced by uninfected cells.  I've read different reports on how long this takes: from a couple of months to a couple of years.  I plan to research this further.  

I haven't yet started taking the low dose Naltrexone (LDN) because I prefer not to start two new medications at once.  I'll probably begin taking LDN some time next week.  Meanwhile I'm still slowly titrating my dosages on the B12 protocol.  I started working Dibencozide into the protocol this week.  I'm hoping the cumulative effect of these treatments will, if not cure me, at least get me feeling close to normal again.

While all of these things are positive, I'm occasionally reminded that I'm still far from 100%.  For instance, on Sunday, my wife and I took our baby girl to meet with some of our friends at the Aquarium of the Pacific, in Long Beach.  We walked around the aquarium for several hours, rarely sitting. Prior to ME, this would not have been a problem, but this time, the flu-like feeling came creeping back.  The good news is, it was mostly gone by the mid-day the next day, but the whole experience was a good reminder of where I am on the road to healing, lest I get ahead of myself.

Plunging into a B12 protocol today

Anyone who follows the Phoenix Rising (PR) message knows about the competing B12 protocols touted by a couple of doctors/researchers who post regularly on the site.  For those that don't know, here's the 2 cent version:

The $0.02 B12 Explanation   

Several years ago, an autism researcher, Dr. Yasko, developed an autism treatment that involved repairing the body's methylation cycle.  The methylation cycle is a chemical process that is responsible for detoxifying the body.  Apparently, studies show that people with various chronic conditions, including ME/CFS, have a malfunctioning methylation cycle.  (Believe it or not, it somehow relates to autism too.) 

Later, a Dr. Rich Van Konynenburg, developed a simplified version of Dr. Yasko's treatment and tested it on a group of volunteer ME/CFS patients.  Like other ME/CFS treatments, it worked for some and not for others.  For a few, it worked extremely well, to the point where they claim to be fully recovered.  At present, Dr. Van Konynenberg frequently posts on Phoenix Rising, answering questions from posters who are interested in trying the protocol.

Another PR poster with a medical/scientific background (known by the handle "Fredd") proposes an alternative protocol that focuses on active forms of vitamin B12 and folate.  Apparently, there are both inactive and active forms of vitamin B12 and folate.  The body converts the inactive forms into active forms, but research shows that some people's bodies don't effectively convert the inactive forms to the active forms.  So Fredd favors taking the active forms to, sort of, sidestep any conversion problems.

On the other hand, according to Dr. Van Konynenburg, the body's conversion process acts as a sort of natural damn, helping control adverse "start-up reactions" that could result from a sudden flood of B12.  It seems, however, that both protocols are known to produce adverse start-up reactions, to the point where many people can't complete the protocols.  In short, it usually gets worse before it gets better.

My First Choice

For weeks, I couldn't decide which protocol to try, or rather, to try first.  Then I began leaning towards Dr. Van Konynenberg's protocol.  Dr. Van Konynenburg's credentials and findings are more widely available on the internet (for example, here, and here), and it seemed like the safe choice. While it's certainly clear that Fredd knows his biochemistry, I don't have the time to look through all of his 2,400+ posts to learn more about his credentials, if they are even available.  BUT, I ultimately chose to try Fredd's active B12 protocol because, after reading hundreds of his posts on PR, I was finally convinced by his arguments. 

It's difficult for me to pinpoint exactly what Fredd wrote to change my mind.  It was probably the collective effect of reading hundreds of posts.  I did find it interesting that Fredd seems to have identified a problem with using the inactive form of folate, which, it seems, Dr. Van Konynenburg later adopted.  Fredd also emphatically warned of potassium deficiency when supplementing vitamin B12, which has already proved important for me.  

In the end, we (the ME/CFS community) are fortunate to have both of these highly intelligent individuals working to help us.  I'd like to thank them both, and, should either of you come across this page (unlikely), please let me know if I have accidentally misrepresented your views above and I'll be happy to correct it.