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

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

Thursday, June 28, 2012

Measuring Improvement, Part 2 - Monthly Averages

On June 19th, I posted my concern about whether I was actually improving due to the prescriptions and supplements I'm taking. While I have the overall sense that I may be slowly improving, I wasn't certain if the numbers would support that.  Now I've had a chance to calculate monthly averages from my health chart, starting from September, 2011.

First, a few notes about my health charting:  Among other things, I chart an overall daily health rating on a 1 to 100 scale, using multiples of 5.  My scale is a little different than others, as I think it is skewed to the high end.  100% is how I felt on my worst days while healthy.  I set the bar low for what I consider 100%.  So for a healthy person reading this, an 80% rating may sound pretty good, but I assure you, it feels like I have a mild to moderate flu....all day long, usually with kidney pain and shortness of breath.  

My "crash" cut-off is generally around 70%.  Anything lower than that often means I'm house-bound for the day.  50% or below often means I'm bed bound for the day.  0% is dead. 

After reading many, many stories of people with severe ME who can barely left their heads from the pillow, I left myself plenty of room at the bottom of the scale.  Hopefully, it will never come to that.  The worst I've ever rated was 40%, which only lasted two days.  Most days fall between 60 and 85%.  The highest I've rated was 95%, perhaps 8 to 10 times.  I use objective measures to try to prevent these ratings from becoming biased over time.  

In the Notes section below, any supplements or drugs noted were begun at or near the beginning of the month. 

Month         Avg. Rating.     Notes             
Sept.          72.34                             
Oct.           77.16                  
Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and vitamin powder
Dec.           80.39               Officially diagnosed; changed diet to low carb; added ImmunoStim, NT 
                                          Factor, and pro-biotics
Jan.            79.07               Added T3 thyroid, pregnenolone, and magnesium
Feb.           72.73               Added methylation protocol; crashed twice due to low potassium and flu
Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly tried LDN
Apr.            75.50      
May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.
June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in month; 
                                          ImmunoStim ran out and is on back order.

The average of all these monthly averages is 77.15.  So any month above that average I'll consider a good month, and anything below is a bad month.  Overall, I appear to be holding steady, more-or-less.  But, there are a couple of theories I might derive from these averages:

My two best months, and the only two months with averages above 80% (Dec. and May), were the two months when I began taking herbal anti-virals (ImmunoStim and Equilibrant, respectively). Although it's still too early to make a final determination about Equilibrant, I wonder if these antivirals produce an initial rally by the immune system, only to allow the immune system to adjust and settle back into a dysfunctional state.  Others on ME/CFS message boards have espoused this theory too.

It's also possible that the dip from May to June was due to my running out of ImmunoStim, which is currently on back order.  The combination of the two herbal antivirals seemed to be working well for me in May, and the dip in June coincided with my running out of ImmunoStim.  Only further evaluation and testing will tell.  I'll update this in a few months.

I also note that, for the most part, my swollen lymph nodes and weekly sore throats went away in December when I began taking ImmunoStim, so do I believe it has been effective.  I also believe the Equilibrant may be flattening my peaks and valleys, making each day more predictable, but not necessarily improving the average.   

I can't honestly say that the B12/methylation protocol has helped at all, but I may try tweaking it.  

Saturday, June 23, 2012

Book Review: How to be Sick, by Toni Bernhard

For my full list of ME/CFS book reviews, click here.

Bernhard is a former UC David law professor who was stricken with ME/CFS on vacation in 2001 and has never recovered.  She has a severe case of ME/CFS, and is mostly bedbound.  She and her husband were dedicated Buddhists from well before her illness, so she writes this book to share her Buddhist philosophies with others who have chronic illnesses.  

First, let me assure you that the book is brain fog friendly.  The main body is only 161 pages, with short chapters and generous line spacing. 

The first two chapters alone makes the book worth reading.  Here, Bernhard recounts the early history of her illness, from onset to diagnosis.  For me, such stories always stir up strong emotions.  Reading someone else's account of those first confusing months before diagnosis can be extremely satisfying.  Bernhard writes about it in a universally relatable way.  

The remainder of the book is Bernhard's presentation of various Buddhist practices as ME/CFS coping strategies.  Bernhard knows that not all of these practices will resonate with all readers, but she presents them as a sort of menu from which readers can select what they prefer.  And if fact, my experience with the book was somewhat of a pick-and-choose experience. 

Too cold: At times, it felt as if the book was attempting to elevate common sense coping strategies to the level of spiritual practice, which often included the assignment of an exotic sanskrit word.  For instance, I'm not sure that I need to know the sanskrit word for:  if you're thinking about something unpleasant, you should try thinking about something else.  

Too hot: At other times, it felt as if the book's techniques would require a deep commitment to Buddhism in order to benefit from them.  Bernhard suggests various mantras and concepts for meditation which seem esoteric and inaccessible.  (One that I particularly struggled with was: "This is just my life." No matter how hard I tried, I couldn't wrap my my around that one.)  

I don't know anyone who merely dabbles in Buddhism.  It tends to be an "all in" or "all out" proposition.  So it is not always clear what the author is suggesting that the reader do with some of these concepts, short of becoming a full-blown Buddhist.  

Just right.  Much of the book offers the reader an opportunity to share in the common experiences - the fears and frustrations - that most PWMEs feel.  Seen in this light, the coping techniques almost become tangential to the gratification of connecting with another person (the author) who is able to articulate so many of your thoughts and replicate your experiences.  

For me, the book's best moments were those that started with common sense ideas but grew into something more.  As a psychologist would say, these moments "validate" you.  After all, you may have had the thought that you should focus on the positive, but the Buddhists have had 2500 years to fully flesh out this idea.  So you may find that your own vague coping techniques are presented here as fully formed ideas - that the book pushes you farther along on a path you started on your own.  

And of course, as with all books written by PWMEs, the author should be commended and thanked for having the courage to share her thoughts and experiences for the benefit of others.  To that end, I also note that the book is published by a non-profit organization.  

In short, it is well worth the quick read.  I recommend it.  (★★★★)

Wednesday, June 20, 2012

Envy for the "healthy" (or Slob MEme)

I'm at the supermarket yesterday, and I get into the checkout line behind this rather unkempt gentleman who proceeds to unload his shopping cart with the most appalling parade of processed junk food.  I'm standing there with a small hand basket of almonds, plain yogurt and bottled water.  And I'm thinking, even with all my healthy habits of late, this guy could probably take me in a first fight!  I hate him for it.

I suppose envy of the healthy is something most new PWME's have to deal with at some point.

Tuesday, June 19, 2012

Measuring improvement proves tricky

For nearly eight months now, since the beginning of November when I first started treating my ME/CFS, I've been steadily "improving."  At least that's what I tell myself.  And that's what I tell others when they ask me how I'm doing.

But in the back of my mind, I keep wondering, if I've really been improving since November, shouldn't I be healthy by now?  Or at least noticeably closer to healthy than I was in November?  When I look back at my daily health log from November and December, I don't see a drastic difference.  I see the about the number of crash days versus non-crash days.

So I am starting to wonder if my sense of improvement might be illusory.  After all, I've always been an optimist, so it wouldn't be out of character for me to unconsciously confuse hope with actual improvement.  I notice I tend to make excuses for my crashes.  "Oh, this one's just a cold virus," I say, or "this one's just a start-up reaction to my new treatment."  At some point, I'm going to run out of excuses.

On the other hand, it's possible that I am improving but that the progress is so slow as to be almost imperceptible - like the process of aging, only in reverse.  I suppose I'll just have to wait longer to find out.  I just wish I could see a year or two into the future.  At least that way I could prepare myself for what's to come - good or bad - and plan accordingly.  But I guess that's part of life with ME/CFS: getting comfortable with uncertainty.

Thursday, June 14, 2012

Wednesday, June 13, 2012

Looking for a little feedback on the blog format

I can't decide which version of my blog I like better, the old or new one.  I've considered going back to the old one, or possibly creating a third version.  I personally think the image at the top of this new version is funny, in a corny way, but I wonder if some people might find it inappropriate for a serious topic like ME/CFS.

I would really appreciate if you would vote in the box on the right.

[Edit: Well, after doing a little market research with my family and friends, I decided to go back to the old look.]

Monday, June 11, 2012

Interview with Laura Hillenbrand

If you haven't seen it, here's an interview from the Today Show with Laura Hillenbrand, the author to Seabiscuit and Unbroken.  She also has ME/CFS.

The interview is mostly about Louis Zamperini, the subject of Unbroken.  But Hillenbrand also discusses writing the book while battling ME/CFS.  Later, Zamperini mentions that he gave her his Purple Heart medal in recognition of her struggles with ME/CFS.    

By the way, Unbroken happens to be one of my favorite books.  I read it before I came down with ME.  Regardless of what type of book you normally read, chances are you'll like Unbroken.  At it's core, it's a story about not giving up hope when you're faced with a difficult situation--something most PWMEs can relate to.

The interview can be watched here.  

ME/CFS yanks my leash

ME/CFS does't seem to want to let me get too cocky.  I'd been on a pretty good streak of non-crash days and was starting to get a little uppity I suppose.  I was hoping that the Equilibrant was slowly clearing the way to better health...and maybe it still is.  But starting yesterday afternoon, ME decided to remind me that I'm still a long way from healthy.

I got the flu and I got it BAD.  I feel like I've been hit by a bullet train.  Weak, achy muscles, tight chest, and what feels like a temperature.  If fact, when I took my temperature, it was above 98.6, which is unusual for a PWME.  Given that, like most PWMEs, I'm usually around 97.2, that's a fever for me.

I'm home laying in bed now trying to regain my strength.  I'm going to nap now and the hopefully I'll see some of you on the message boards later.

Saturday, June 9, 2012

New look to the blog

You may have noticed that my blog has a new look.  While I loved the old picture-background, I felt that it was too busy.  I decided that readability is more important than a snazzy look.  So I changed the blog to this more simple format, increased the size of the font, and increased the contrast between the font and the background.  I hope you'll find it easier to read.

About the banner image at the top:  The "gun" is a prescription bottle.  The target is a virus.  It's supposed to be campy.  Hopefully that comes across, or I'm going to look like a huge... so-and-so.

Wednesday, June 6, 2012

Reactions to Diagnosis - MEme

Eureka: Stevia Italian sodas

There are many of us PWME's who can't (or shouldn't) drink anything with caffeine, sugar or artificial sweeteners, which basically leaves only water and herbal teas.  If you're like me, every so often you get a craving for a sweet drink.  A really bad craving.

Sure, you can try to tell yourself that primal humans drank only water.  But then again, primal humans didn't know what they were missing!  I've spent 35 years drinking whatever I want, whenever I want.  One can't simply turn off a life-long habit.

I have to credit Mrs. Calvin for this idea.  Walking through Whole Foods Market, she discovered the existence of flavored liquid stevia.  Two ounce bottles of this little magical elixir come in flavors like vanilla, lemon, orange, chocolate, raspberry and others.  From this discovery (and possibly from reading the side of the bottle) Mrs. Calvin came up with the idea of adding the flavored stevia to sparkling water to make Italian sodas.  So we tried it.

I don't want to ruin the surprise, but please sit down before you take your first sip.  And make sure your socks are on tight.

The bottles of flavored stevia that we purchased at Whole Foods cost about $13, but can probably be purchased online for less.  You only need a few drops to flavor a whole glass, so the bottle should last a very long time.

Happy gulping.

P.S.  Did you know there's a commercial brand of stevia sodas called Zevia?  If anyone's tried this, I'd like to hear from you.

P.P.S.  For more of my stevia product reviews, click here.

Tuesday, June 5, 2012

Equilibrant update

For those new to my blog, I started a treatment called Equilibrant a little over a month ago.  This was at the suggestion of my doctor (Dr. C), who is one of the better known ME/CFS researchers on the West Coast.  A summary of Dr. C's theory regarding immune imbalance and Equilibrant is here.

I'm not ready to declare the Equilibrant a resounding success, but I believe it may be working.

I am still ramping up the dosage.  Each week, I add one more pill per day.  Currently, I'm taking 5 per day, where the maximum dose--and Dr. C's recommendation--is 6.

Before the Equilibrant, my cycle of crashes and recovery was fairly predictable.  I would typically experience 3-6 days of crash, followed by 3-6 days of recovery.  And the cycle would repeat.  Dr. C said that if the Equilibrant is working, the crashes would gradually become less severe and of shorter duration.

In the middle of May, I had a week-long crash that was just as severe and just a long as an average crash before the Equilibrant.  But, if we take that crash out of the picture, I've had a pretty good 5 weeks.  True to Dr. C's word, I've had many periods of recovery which were followed by what felt like the onset of another crash.  But the full-blown crash would never materialize.  Instead, a half-baked crash would set in, hang around for a day or two, and then lift.

Another hopeful sign is that I've experienced a brief start-up reaction every time I've increased the dose.  Dr. C said this would happen if the Equilibrant was indeed nudging my immune system toward Th1.  Within 3-6 hours of increasing the dose, I feel flu-like symptoms.  The interesting thing is that the symptoms are a different "flu-like" feeling than when I crash.  They come with muscle aches and tenderness in my neck, which is not what I typically experience when I crash.

Having said all that, I still think it's too early to attribute my modest improvements to Equilibrant.  I've certainly had other good streaks before the Equilibrant, although maybe not this good.  I'll update again in another month or so.  Eventually, I'll have my Natural Killer Cell activity tested again, which will provide a more objective measure.