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

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

Monday, January 12, 2015

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.   


  1. It makes me so happy that you keep making steady improvement and I love how pragmatically you tackle treatments and recovery.

  2. hi, i just came across your blog googling @methylation. great blog thanks for your efforts

    I am very interested to hear more details re: your side effects/reactions to taking the B Vitamins for someone with CBS mutations. ? can you expand on why you think you could never tolerate the active B forms or etc??

    fwiw (i tested positive for 16 mutations (most +-) on Yasko gene tests and had very bad reaction to taking a MethylFolate (solgar 800mCg or 1/10th of it). I did have improvements taking synthetic Bs via Dr Teitelbaum daily multipower... so i know i need to be taking Bs but can' afford any negative reactions at all as am by myself and need to be able to think clearly. thanks Carol

  3. hi update to clarify i saw your post from a few weeks ago with attached spreadsheet. it appears you are still taking Vit Bs via both yasko All in one multi and farterh down your googlelist you mention another Vit B supplement... so you are getting a good dose of Vit Bs in both those... what did you mean you have stopped experimienting with Vit B12 and longroute supplements ; can you clarify mroe? thank you
    fwiw re; prostate , many women with Fibromyaglia or hypothyroid or etc, can have interstitial cystitis.(imo and others the 2 are mirrors ) i had it for manymany years . 1 aspect to look at is stress levels and nitric oxide (affected/affects methylation) and testosterone and dht . BTW: a fact that 99% doctors or patietns do not know: All of our cells make testosteroneS and EstrogenS out of the 'prohomorne" DHEA(and dhea-S(sulfated:) that our adrenal glands make... gonads only make 25% of womens entire production of estrogens and for men its about 45%. So what is in the blood is only what our gonads make ,, but that does NOT reflect total body levels INSIDE all cells and extracellur matrix etc .. Blood testing =gonad production.. Saliva testing reflects salivary glands and paracrine neighbors production (and can Assume that other cell Types and areas of body are able to do about the same but only an assumption! ) auto crine paracrine and INTRAcrine production (Dr Labrie)
    -Urine testing for all metabolites (includign intermediate metabolites?) should be part of the total body assessment ; tho i can't find any labs who offer this to patients yet. testing all 3 is very important for women at menopause as well!
    basically doctors made a HUGE mistake when the told women in the late1900s that their estrogen had fallen to zero and that meant women should thae Estrogen/progesterone RX! uh wrong... our BLOOD levels of estrogen fall to about zero.. but that was only ever 25% of our total body production thanks to INTRAcrinology. ( am not saying women should not take an RX thru the menopause transition.. just that doctors are clueless they don't think about the total body .. left hand not recognizing the right hand :0 forest for the trees type thing

  4. You may be taking the wrong form of B-12 for you.