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

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

Saturday, January 26, 2013

Gallery of Dead Possessions

Being newly diagnosed (within the last two years) I find that reminders of my past life are everywhere. It's difficult to open a door, or a cabinet, or a closet in my house without seeing something that reminds me of my former healthy lifestyle.  These objectsthese remidersare everywhere.  I'd imagine that other newly diagnosed patients deal with the same issues.  What are we supposed to do with this stuff?  Will we ever use any of it again?

I decided to start liquidating some of itselling it on Craig's List.  Not all of it.  Just some. I figure, not only will this help me move on in my life, but it should emancipate a nice chunk of cash that's currently locked up in useless possessions.  

So this post is a sort of tribute to some of my favorite old possessions. (Man, that sounds corny).  I'll miss you, but I have to move on.  

*Incidentally, these pictures served two purposes.  If they look like they're arranged to be appealing to a Craig's List buyer, you're right!

This is the world's greatest beer pong table. We had some good times together. 
In surfing, your board collection is called a "quiver."  This is a small-ish quiver -- serious surfers have 6-10 boards.  You want to have a board for every mood and every sea condition.  I'll probably keep the longboard in case I improve well enough to do some lazy surfing in the future.  If not, my daughter can use it as a starter board some day.  The others must go.

Ahh, the hot tub.  Sadly, they say that PWMEs should avoid chlorinated water because the chlorine absorbs through our skin and our defective detoxification mechanisms can't deal with it effectively.  We'll see.  I might still use it occasionally.
Here's a little wetsuit drying rack I built out of PVC pipe.  It will still get some use from my wife's wetsuits, but  not nearly as much.

Mrs. Calvin doesn't drink much hard alcohol, so this stuff just gathers dust. 

Dry foods.  It's mostly carbs (except the nuts).

My work bench, my baby.  I shouldn't say these tools are completely useless to me now -- I still use them sometimes, just not nearly as often.

Three wetsuits: one for Winter, one for Spring & Fall, and one for Summer.  I can't tell you how much I miss suiting up.  It's like wearing a full-body compression sock: you're heart doesn't have to work nearly as hard to circulate blood. It's pretty relaxing

Sports equipment.  I'll probably keep the golf clubs - golf sounds like a reasonable possibility in the future.  

Snowboard gear.  It kills me that I might not be able to teach my daughter how to ski or snowboard.  I had always looked forward to that. 

This is a roof rack that allows you to strap surfboards to your car. 

Nintendo Wii.  Believe it or not, most of these games will cause me to crash if I play them.  

Backpacking gear.  Drive-in camping is still doable, but backpacking and hiking is out of the question right now.

Power tools.  I feel good just looking at these things.

Never used 'em much anyway.  I won't shed any tears over this stuff.

Actually, I might use these weights again some day, but I'm sticking to Tai Chi for now

Yerba Mate' accouterments.  Yerba mate' is a type of loose leaf, high caffeine tea from the lower half of South America.   You're supposed to drink it out of these gourds, as the natural flavor of the gourds leeches into the tea.  The metal straws (called bombillas) filter the tea leaves.  Unfortunately, the high caffeine content doesn't agree with me now.  It also supposedly robs one of B vitamins, which is the last thing I need.

Yoga mat.  I can still do some light yoga, but not enough to attend classes (which is where I used this mat).

Running shoes. Look at them--they're begging me to take them out for a run.  Sorry guys.

Breathalyzer.  People love these things at parties, I'm not kidding.  Apparently, folks like to see who is the drunkest at the party.  After it left my hands at a party, it was often hard to get back. 
Oh Bev Mo.  You're like the Toy'R'Us for adults.  I miss you.

TideMaster watch. This sucker tells you what the tide is at any given moment at thousands of beaches across the world.  It's based on the beaches' latitude and the position of the moon.

And finally, here's a small sampling of the clothes that don't fit any longer due to weight loss.  Some I've had altered, others are going into storage in case I gain the weight back.  

OK, that felt good to unburden myself.  Thank you.  In the future, I hope to do a more positive post about all of the items that have become more useful to me with ME/CFS.  I seem to have shifted my focus to more creative pursuits, which comes with a whole different array of fun supplies.

Monday, January 21, 2013

Link: Comparing leading exercise advice for ME/CFS

I'm going to blatantly borrow another blog topic from Sue Jackson, whose blog post from Saturday linked to another blogger (Jennie Spotila) who wrote a great post comparing the exercise recommendations of Dr. Klimas to those the the Pacific Fatigue Lab.  It's another must-read article in my opinion.  

Wednesday, January 16, 2013

ME/CFS explained in simple terms

As I'm sure most of us have, I've read dozens, maybe hundreds of attempts to explain ME/CFS.  I know from experience, it's no easy task.  This illness is so complicated that if you try to simplify it, you downplay the seriousness, but if you try to explain it in its full 'glory', you'll likely lose your audience.

This is one of the clearest and best I've read at least with respect to the role of cytokinesalthough a bit oversimplied.  A highlight is excerpted here, but the whole article is worth perusing if you have time:

"With an infection, the body jumps into action to defend itself, but usually not for several days. For example, if you are in the checkout lane at the grocery store and the person next to you coughs on you, you breathe in the flu virus. The virus particle lodges in your airway and begins to multiply; yet you feel just fine. In fact you feel fine for three days or so (the incubation period) even though the virus is growing like mad. Then, Saturday afternoon, at exactly three PM, you come down with the flu: fever, headache, aches and pains, exhaustion, sore throat, nausea… What actually happened on Saturday was that your body recognized the attack by the flu virus and began making cytokines to begin the counter-attack. And the cytokines make you feel sick.             
You stay in bed for a few days while the battle rages. The battle is carried out on several fronts and after the immune system makes antibodies the infection is brought under control. When that happens the production of cytokines slows down, stops, and you feel better. A few more days and you are back to normal, if everything goes right.            
The production of these cytokines, (specifically interferon, IL-1, IL-6, and TNF) is known to cause the symptoms of illness, often called “acute sickness behavior.” This term does not imply that there is anything artificial or psychological about the behavior, it is as real as limping behavior in a person with a broken leg. These effects of cytokines were discovered during trials where the cytokines were given to healthy volunteers who then developed fever and other symptoms.            
 In ME/CFS something goes wrong. The infection may be an ordinary “garden variety” virus, an enterovirus, or the Epstein-Barr virus of mononucleosis. But in a person with the genetic vulnerability the process does not shut down and the flu-like sensation persists for months, years, sometimes for the rest of his or her life. It is this abnormal mechanism that is the center of attention in ME/CFS.            
The symptoms caused by cytokines differ from “end organ” symptoms. For example, weakness is a common symptom in ME/CFS, but muscle testing with electrodes does not indicate muscle fiber disease. Characteristically, the sensation of profound weakness is experienced by those persons given cytokine injections despite normal muscles. Confusion and problems with memory and attention are symptoms caused by cytokines and in experimental subjects, when the cytokine wears off these cognitive symptoms resolve without damage to brain cells (presumably). It is precisely because these symptoms are not caused by diseases of muscle or joint that medical providers have ignored them. If you go to the doctor with a cough caused by the flu you are patted on the head and ignored, unless you cough up gobs of lung tissue. Then it is taken a little more seriously."
Of course, this is just part of the big picture.  It doesn't address the endocrine issues, mitochondrial dysfunction, myalgias, neurological issues or any of other symptoms we experience.  These other symptoms are only alluded to in the full article as being a downstream result of the "abnormal cytokine cascade"but it's a good start.

I like how the author begins by relating ME/CFS's origins to a normal cold/flu, which is a great starting place for readers who haven't studied ME/CFS.  When explaining ME/CFS to someone who doesn't have it, it helps to start with something they can understand and relate to, and build from there.  The next time I have to explain ME/CFS to healthy person, I'll start with this article.

Monday, January 14, 2013

Book Review: The Paleo Solution, by Robb Wolf

I've added this book review to my ongoing list of ME/CFS-related book reviews.  For the full book review page, click here.  

I had already been on a Peleo diet for about a year and a half when I started this book, but sometimes I just like to 'reaffirm my faith.'  Keeping such a strict diet requires a fair amount of willpower, so I find that it's good to remind myself of why I'm doing it in the first place.  The Paleo Solution did that and even taught me a few things I didn't already know.  

Drawbacks:  If you read the 1 star Amazon reviews of this book, almost none of them mention the diet itself.  They all seem to focus on Wolf's writing style, which can be annoying at first.  Wolf is really excited about paleo.  I mean, really excited.  And he wants everyone to know it.  So his writing style comes off as a little bit pushy and sales-y, like an infomercial.  To him, every reader is a whining, reluctant wimp who needs tough love.  Wolf likes to address you as "Buttercup" before he gives you some no-nonsense straight talk.  

But the writing style ceased to bother me after the first couple of chapters.  We all know people with quirky personalities.  After a time, I sort of adjusted to Wolf's idosyncrasies and accepted that "it's just Robb being Robb."  For me, it happened by Chapter 3.  But this is, of course, subjective.  A minority of people just won't be able to get past the style.

The only major substantive failure was that the book failed to explain why dairy should be minimized or avoided.  While Wolf makes the case against sugar and grains like a dogged prosecutor, dairy was hardly mentioned except to say that it should be avoided.  As someone who's on the fence about dairy and still eating/drinking it occasionally, I would have liked more informationmore scientific data, as in the grains sectionto make up my own mind.  

Pluses:  For a book with such a quirky style, the scientific content can seem out of place.  By Chapter 3, Wolf delves heavily into the scientific underpinnings of the Paleo diet.  This is the good stuff.  I've read much of this information before, but Wolf explained it in layman's terms perhaps better than anyone else. He makes a very convincing case.  Just like I did with Life Without Bread, I'm now trying to convince my loved ones to read this book because I want them to get it.  

The longest chapter in the book is on exercise.  Most PWMEs will want to skip that chapter since any real exercise, in conventional terms, is pretty much out of the question.  I read the exercise chapter anyway just for the information about the daily lives of cavemenalways fascinating to me.  

The second to last chapter contains several dozen paleo recipes as part of a proposed 30-day meal plan, including paleo pancakes and paleo pizza.  I suspect most people won't follow the 30-day meal plan day-by-day, but rather, will pick and choose a few of the best recipes.  Finally, the last chapter has some great information about supplements, like recommended doses, brands, and the importance of them.  This should be a popular chapter with PWME's.  I learned a few things about DHA/EPA ratios and the importance of quality in Omega-3 supplements.

It's fairly brain-fog friendly book and, at the same time, loaded with facts that will convince you (or reaffirm your faith) that paleo is the only way to go and rest of the world needs to get on board or continue slowly killing themselves.  (★★★½)

[5/30/13 edit:  The paleo pancake recipe is absolutely incredible.  I think they taste better than regular pancakes, and others who are NOT on paleo diets have agreed.  It's worth the price of the book just for that one recipe alone.  We now eat paleo pancakes about once a week for dinner.]

Friday, January 11, 2013

Video Interview with Dr. Chia - A Must-Watch

Below is a two part interview of Dr. John Chia where he discusses the causes of ME/CFS and his recommendations for its treatment.  I may be biased, as Dr. Chia is my treating physician, but I strongly believe that every PWME and their friends/loved ones should watch these videos.

The interviewer is journalist Lewellyn King of PBS fame.  King has taken an interest in CFS in recent years, as seen in these interviews and on his website.  (King's article "Chronic Fatigue Syndrome and Its Chronic Costs," linked above, is also worth reading.)

You may wish to watch a larger version of these videos by clicking the YouTube symbol in the lower right corner of the screen and watching the videos directly from YouTube.  


                                                                            PART 2

Thursday, January 10, 2013

A flaw in my diet plan: Almonds

I've been on a low carb, Paleo-like diet for over a year.  (I say Paleo-like because I eat modest amounts of dairy from time to time.)  There's no question that the diet has helped me improve, especially my gut symptoms.  "Nausea and gut disturbances" used to be a category on my daily health chart, but I was able to eliminate that category about 3 months after switching to a low carb diet.  I don't experience gut issues any longer unless I break from the diet.  

But since changing to a low carb diet, almonds have been a major staple in my diet.  I toss those suckers back by the handful; I drink almond milk dailyall because I read somewhere that almonds are one of the few nuts that are compatible with an anti-Candida diet.  (My blood tests continue to show high Candida antibodies.)  

On the other hand, an anti-inflammatory diet is important for PWMEs.  It is thought that inflammation is one of the causes of many of our symptoms in ME/CFS,[1][2] and it seems that the low carb diet crowd keeps growing and growing in ME/CFS circles.  God knows, it has helped me.

Now, one of the keys to an anti-inflammatory diet is maintaining a low ratio of Omega 6's to Omega 3's.  Omega 6's are pro-inflammatory fatty acids, while Omega 3's are anti-inflammatory fatty acids.  Omega 6's are much more common in our foods, so it's difficult to achieve a 1-to-1 ratio of 6's to 3's, but a reasonable goal is about 3-to-1 or 2-to-1.

So as I was reading tips to lower one's Omega 6/3 ratio, I came across this tidbit from

"So, how can you go about lowering your 6:3 ratio? One excellent approach is to [eliminate] foods in your diet that are relatively high in omega-6s and low in omega-3s. 
For an example, let's take almonds. With no omega-3s and about 4-5 grams of omega-6s per cup, your almonds are a member of the nut family with the highest possible 6:3 ratio. Once you've located a food like almonds with a very high 6:3 ratio, look inside of that same food group (in this case nuts) for a food with the most possible omega-3s. In this case, walnuts would make an outstanding choice within the nut group because walnuts have about 2.25 grams of omega-3s per quarter cup and a 6:3 ratio of about 4:1. Just by replacing almonds with walnuts, you could make an important shift in your 6:3 ratio."
I checked the accuracy of this ^ statement against other sources and it appears to be true.  Many other sources warn against the pro-inflammatory qualities of almonds.  It's just a little vexing to know that I may have been cancelling out some of the benefits of my diet for the last year.  On the other hand, I suppose it's encouraging that I might reap even more benefits from my diet by making one simple elimination.

Now, the challenge is to find a replacement for all those nutty almond calories.  Walnuts?  We'll see...

Monday, January 7, 2013

Article: What PWME's Want Well People to Know

Thanks to Sue Jackson and her excellent blog for bringing this article to our attention.  I'm going to repost it here because it's a great summary of the frustrations that we face in dealing with some well people.  My only criticism of the article is that it paints with too broad of a brush and doesn't do enough to acknowledge that there are many well people who do get it.  

Sunday, January 6, 2013

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.

Thursday, January 3, 2013

My Daily Health Chart

Since I'm always interested in exchanging ideas and tip for managing this illness, I thought I'd share my daily chart.  It's my understanding that many of us track our daily progress in one form or another.  I've spoken with several other PWME's who keep similar charts.  Without it, it's hard to gauge which treatments may be helping, and which activities may cause crashes.

I'm always interested in improving my chart and sharing ideas, so I hope this will generate a discussion or exchange of ideas.

Before I post the link to my chart, a few notes:

This is not my actual chart, but a replica with the same format and categories.  The 5 day's worth of health information is just made up.  While I don't mind sharing most of my ME/CFS journey with the general public on this blog, I have to draw the line at this greater level of detail.

Google Documents:  When I first started, I kept a chart locally on my computer.  Around June of last year, someone recommended that I use Google Documents' spreadsheet format.  (I think it was Grayson or Baffled?)  I soon switched to Google Documents and never looked back.  I can now access my chart from any computer.  I don't have to take anything with me if I leave the house for a few long as I'll have access to a computer.  I can also provide a link to my family and they can access it from their computer.

The spreadsheet format also allows me to create instant graphs from any two or more of my columns.  So, for instance, I can highlight the column rating my overall daily score, and the column rating my daily physical activity.  (I measure both on a scale of 1 to 10).  The program then instantly creates a graph that allows me to visually spot patterns and relationships between the two types of data.  This helps me see trends and causal relationships that I wouldn't have ordinarily noticed.  I can try to pinpoint where my crash threshold is.

Because of the graphing capabilities of the Google spreadsheet, I try to use numerical values, not words, whenever possible.  For instance, under the column "Work Day?", instead of writing a Y or N, for Yes or No, I use 1s and 0s.  This allows me to create a graph and observe, visually, how work impacts my overall daily health rating (not so far).

I'd love to hear what tips and tricks others have picked up.  My sample chart is linked below:

Tuesday, January 1, 2013

Update to last night's post

I did, indeed, spend midnight of New Year's Eve in the emergency room.  In fact, exactly at the stroke of midnight, I was getting blood drawn from my right  wrist.  I remarked to my phlebotomist that the clock had just struck midnight but he didn't seem to care.  Just another night in the ER I suppose.  At least I'm not likely to forget where I spent NYE 2013.

Anyway, the ER doctor thinks my extreme shortness of breath was "probably" due to the Epivir.  My blood oxygen level measured low--although not so low as to require intubation.  He told me to stop taking the Epivir immediately and see if my situation stabilized.  So far, today, I do feel slightly better.

As always, thank you for reading.  And happy new year.