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

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

Friday, January 31, 2014

Some excellent crib notes on Osler's Web

Ever since, I got ME/CFS, I started diving into the research and trying to learn as much about it as I could  like many of us do.  Mostly I read internet sources, but I've also read a handful of books, which I've reviewed here on this blog.

The one book that I've always intended to read but haven't yet gotten around to is Osler's Web, by Hillary Johnson.  My understanding is that the book is basically a history book of how this disease came to be so utterly cursed and ignored.  (It is a bit outdated at this timepublished in 1996so the point of reading it would be more to understand "our" past, not to get current information).  The book was apparently written by a journalist who dug deep into the the background of government handling of this disease and produced this book which could almost be considered in the muckraking tradition of Upton Sinclair and others.  Many patients swear that Osler's Web is a "must read" in order to really understand this disease.

Two things have held me back from reading it so far.  One:  It's 720 pagesUgh.  Two: it sounds like it would make me very angry, and that's not fun.

I still intend to read it one of these days, but in the mean time, the best summary of it that I've read actually comes from an autism website.  If  you're interested in reading a good crib notes summary of Osler's Web, you could do worse than this one:

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

Thursday, January 2, 2014

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 implementeda 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" supplementsbefore I even got to the methylfolate and vitamin B12 supplementsthe 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 yearcrippling groin pain and prostatitisbacterial 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.