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

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

Tuesday, January 31, 2012

The Kid(ney)s Are Alright

I returned to the nephrologist's office today to receive the results of the 24/hour urine & blood test that would supposedly provide me with the definitive answer about my kidney pain.  The appointment began with the doctor gliding into the exam room and, with finger raised in air, declaring, "Son, your kidneys are functioning at 115% of normal."  What he meant was that the normal range for creatinine clearance is 85-125 ml/min, and mine was 127.  Also, protein in the urine should be less than 150mg/24hr, and mine was way down at 118.

The X-rays and ultrasound of the kidneys were also normal.

"Then why do I constantly have pain there, and why do I always have foam in my urine," I asked.  He didn't know.  He guessed that sometimes dietary supplements can cause the foam, but he shrugged his shoulders about the pain.  He suggested that drinking more water might help.  I already drink about 2.5 quarts per day, but I guess there's room from improvement.

After reviewing the lab report myself, I asked if I should be concerned that my eGFR score (the standard test of kidney function) was only 90.  (The "normal range" is given as >60, but people my age are usually in the 120-130 range).  In his ethnically ambiguous accent, he said, "forget about eGFR!  You've now had the better test."  He explained that the 24 hour creatinine clearance test is the gold standard test of kidney function.  Apparently, eGFR scores can also drop when a person is consuming a diet high in meat (which I am).

So it seems the kidney-area pain will become another of my unsolved medical mysteries.  But at least I have some level of reassurance now that I've pursued that issue as far as I reasonably could and everything appears normal.

Meanwhile, I'm in the middle of a crash.  So I guess there's nothing left to do but kick back and listen to The Who, and then maybe catch a movie:

Too corny?  Sorry, I couldn't resist.

Monday, January 30, 2012

10 ways ME actually **saves** me money

Ridiculously Optimistic Bright-Side Post #1

Every once is a while, I begin to worry about the cost of all my dietary supplements.  On top of that, I remember all the doctor's office co-pays and prescription co-pays and it starts to stress me a little.

At times like that, I have to remember that life before ME was undoubtedly more expensive.  I challenge other PWME's to think about how expensive their lives were before ME.  Here are just a few of the costs of my former lifestyle that have been reduced or eliminated -- which more than make up for the additional expenses.  (I do understand that many PWME's are unable to work, and that certainly complicates finances, to put it mildly.  But for now, I want to look at the expense side of the equation only.)

1.  Liquor   Order a bottle of wine at a restaurant and sometimes it's half your bill.  Even a glass of house wine is sometimes $10 or more.  A 12 pack of any decent beer runs $20.  Not a problem for me anymore.

2.  Fancy coffee drinks.  My days of ordering $5 venti cappuccinos or $4 chai lattes are over.  My doctor said, "nix the caffeine."  And you know what?  I don't really miss it.

3.  Other beverages.  They say that restaurants make their profits from beverage sales: sodas, lemonades, teas, sparking water.  Well, not from me anymore.  I'm not supposed to have any drink that's sweetened with anything other than stevia.  So now I drink only water at restaurants.

4.  Travel costs.  I don't drive as much because fewer activities are "on the table."  My wife and I have also gotten better about asking friends to come to us.  With gas prices averaging about $4/gal in California, this saves a ton.  It also puts less wear and tear on my car.

5.  Recreational costs.  Personally, I had a bad habit of spending (some would say, frivolously) on upgrading my sports equipment.  I always seemed to be shopping for a newer and better surfboard or snowboard.  At $500 to $800 apiece, this wasn't a cheap hobby.  Not to mention the cost of ski lift tickets (around $80/day).  Don't get me wrong, I'd return to my former lifestyle in a heartbeat if I could, but at least I'm spending less money.

6.  Gym membership.  There's $40 per month ($480/yr) more in my bank account.

7.  Desserts.  Whether it's ice cream sandwiches from the freezer at home, or $12 creme brulee at restaurants, I don't eat them anymore.

8.  Entertainment.  I'm certainly not cutting entertainment out of my life, but I probably won't be going to as many public concerts or movies, especially if I'm in the middle of a crash.

9.  Other healthcare costs.  The changes I've made to my diet will most likely avoid other health complications as I grow older.  My diet before ME was truly atrocious, but I hadn't yet realized it.  I believe it would have eventually led to other health problems.

10.  Impulse purchases.  In general, I'm much less likely to be "out shopping," and so less likely to make one of those foolish impulse purchases that I'd regret later: like a rice cooker or a ridiculous looking track jacket.

I'm sure there are more, but these 10 alone are more than enough to offset the cost of supplements and co-pays.  So I'm not going to worry about it any more.  Besides, what could be a more worthy expense than something to benefit one's health?  Now I understand why my grandparents always said, "...the important thing is you have your health."

Sunday, January 29, 2012

ME/CFS Book Reviews

*This post will be an ongoing project, updated whenever I read a new ME/CFS related book.  I use the term "related" loosely here.  I employ the same 5 star rating system as Amazon, Netflix and most of the rest of the internet. 

Before I get into the details of this book, I want to mention that this review is written from the perspective of an ME/CFS patient reading a book that is primarily about chronic Lyme disease. The book overall has excellent reviews on Amazon  and it actually reached the New York Times Best Sellers list, which is remarkable for a specialty health book.  Clearly, Dr. Horowitz did something right here.

I read this book for two reasons.  I had recently received a questionable Lyme disease diagnosis, and I wanted to read a book about Lyme to see if it would help me decide whether I truly have Lyme or, if not, what else I could do to shed more light on this murky topic.  The second reason was that ME/CFS and Lyme seem to have a large amount of overlap in symptoms, test abnormalities, and treatments.  A Lyme book could be valuable reading for an ME/CFS patient.

At times I found this book to be a bona fide page turner; I was learning new things on nearly every page. Mind you, if you've been an ME/CFS patient for any period of time, you probably won't learn anything new on a "macro level"that is, you won't discovery any new concepts or treatments.  But the book offers a deeper understanding of many of these old concepts, like mitochondrial dysfunction, the HPA axis, immune dysfunction and others.  Dr. Horowitz views Lyme, ME/CFS, Fibromyalgia, autoimmune diseases, and other neuro-immune illnesses as being part of a spectrum he terms MSIDS (more on that later...), so it's relevant regardless of which neuro-immune disease one might have.

Usually when I read a health book, I'm constantly assessing how I might rate the book.  For over 400 pages, I had this book pegged as a solid 4 stars, despite its flaws.  Then on page 437 I came across this in a Chapter 19 called "Lyme and Exercise":
"Patients with Lyme disease, fibromyalgia, and chronic fatigue syndrome (myalgic enchephalomyelitis) find their fatigue and pain syndromes improve with increased exercise, independently of other changes in their medical regimens."
Uh oh!  It gets worse. Later, he says:
"Aerobic exercise has been shown to be effective in reducing fatigue among adults with chronic autoimmune conditions, as well as those with depression, cancer, multiple sclerosis, and chronic fatigue syndrome."
Later he recommends "a graded exercise program."  In the span of two pages, the book went from a 4 to a 1 star.  I was left wondering, how could someone who purports to be an expert on, among other things, ME/CFS be unaware of all of the studies showing that exercise makes ME/CFS patients worsethat it is, in fact, dangerous?  The book has a copyright date of 2013; two years before the Institute of Medicine (IOM), in conjunction with the National Institute of Health issued its report which attempted to rename the disease SEID, or systemic exertion intolerance disease. One wonders if Dr. Horowitz took note of the IOM report when it was published and if future editions of the book might contain a revised Chapter 19.

But let's not allow the review of a 532 page book be about 3 sentences.  Although I probably risk being ostracized from the ME/CFS community for saying this, the rest of the book does have some value.

The Good.  To build on what I said above, Horowitz does an excellent job of taking the reader on a wide ranging, comprehensive tour of the various systemic failures and corresponding treatment options for patients with chronic neuro-immune diseases.  A brief scan of the chapter headings for chapters 5 through 18 gives an idea of the breadth of this book:  Immune Dysfunction, Inflammation, Environmental Toxins, Functional Medicine and Nutritional Therapies, Mitochondrial Dysfunction, Hormones, the Brain, Sleep Disorders, Autonomic Nervous System Dysfunction/POTS, Allergies, Gastrointestinal Health, Liver Dysfunction, and Pain.  

Despite having read extensively about most of these topics in the past, many of them were explained in a more clear, logical way than I'd ever previously encountered. For that reason alone, I'm glad I read the book and I'm glad I have it in my library as a reference source, despite the glaring flaw regarding the "e" word.

The Bad.  Besides the exercise disaster mentioned above:

1)  Dr. Horowitz tries to coin a new term: MSIDS, which stands for Multiple Systemic Infectious Disease Syndrome.  This is meant to be a sort of overarching spectrum upon which the various neuro-immune diseases fall.  The problem is, we don't need another acronym. This is obviously not a term that will catch on in the larger medical community.  The goal of a book like this should be to make the subject less esoteric, not more.

2)  Similar to the above, Dr. Horowitz proposes an MSIDS diagnostic algorithm amusingly called "The Horowitz Sixteen-Point Differential Diagnostic Map."  Every time he refers to it throughout the book, which is often, he repeats the full 7-word eponymous title.  I pictured the author in an infomercial, and whenever he says "...the Horowitz Sixteen-Point Differential Diagnostic Map" we hear the chime of a spoon against a crystal glass as a cartoonish gleam flashes on the doctor's smarmy grin.  A voice-over adds "TM."

Look, things like this make me question an author's motive.  Is he a true scientist at heart, nobly trying to expand the knowledge base and heal people in the process, or is he trying to become the next celebrity doctor, ala Dr. Oz.  I don't want to be questioning this when I'm simply here to find some answers to my health problem.  It makes me want to say:  "It's not about you, doctor. It's about the patients."

3)  Each chapter follows roughly the same format: There is an explanation of the scientific evidence regarding the topic of the chapter, be it Immune Dysfunction, Inflammation, etc., and a review of various treatment options.  This is often done quite masterfully.

Then each chapter concludes with an anecdote or case study, lasting anywhere from 2 to 6 pages. These quickly become tedious and formulaic.  A patient comes to Dr. Horowitz very sick and desperate.  Dr. H applies The Horowitz Sixteen-Point Differential Diagnostic Map* (TM) and this results in him trying one or two treatments.  The patient returns a few months later still feeling miserable.  Dr. H digs deep inside himself and has a brainstorm.  He adds another treatment.  The patient returns a few months later smiling and signing. They hug. The end.

These anecdotes add very little except unnecessary length to an already long book.  The book would have been better without them.  They also serve as the vehicle for some eye-rollingly corny jokes.

4)  Dr. Horowitz struggles with objectivity a times.  He mentions that he has treated thousands of "MSIDS" patients but we are rarely let in on the big picture. What percentage are recovering fully?  Are they staying recovered?  Instead, the aforementioned anecdotes leave the reader with the impression that Dr. H is a kind of miracle healer.  It makes one want to run out and immediately board a plane to New York to track him down.  It is, of course, acceptable to use anecdotes to make a medical book more engaging, and naturally, the successes make for the best stories.  But the author should take care to emphasize that the results in the anecdotes are not typical, and that many patients (presumably) remain ill despite using the very same treatments described in the anecdotes.

The same goes for Dr. H's coverage of controversial testing and treatment procedures. It is OK for the author to pick a side on these controversies, but he should first explain both sides and then explain why he picked his side.  For instance, in the Allergies chapter, he discusses so-called IgG allergy testing and comes out heavily in favor of it.  There is very little credible evidence that IgG allergy testing is valid, and in fact, the weight of the evidence seems to suggest it is probably not effective. At the very least, it is highly debatable.  You wouldn't know this by reading WCIGB.  

Another example is Dr. H's reliance on controversial Lyme testing laboratories and other laboratories that test for metals and environmental toxins.  They are all controversial in their own way.  Dr. H should explain both sides of the controversy before choosing a side, so that patients can make their own informed decision.

Despite these flaws, I would have still rated this book fairly high if it wasn't for the melt-down in Chapter 19.  As an ME/CFS patient, I can't in good conscience give it anything other than a 1 star (★)

                                           Feel Good Nutrigenomics, By Dr. Amy Yasko

I recently finished Dr. Amy Yasko's latest book Feel Good Nutrigenomics.  It was the second book I've read by Dr. Yasko, the other being Autism: Pathways to Recovery.

If you've ever known a true scientist, you now they often struggle to explain their expertise to lay people.  Dr. Yasko doesn't seem to have that problem.  At this point, she's sitting on at least a decade of experience in explaining nutrigenomics and the "methylation cycle" to lay people.  With this book, we see the evolution of Dr. Yasko's theories and her educational style.  She is becoming more adept at simplifying this subject with each passing year.  The improvement is noticeable over Pathways to Recovery, which was published in 2004.

In Feel Good Nutrigenomics (FGN), Dr. Yasko makes her strongest case yet that "multifactorial" diseases (like Autism, ME/CFS, Parkinsons, etc.) can be attributed, in part, to faulty gene expression. She makes an equally strong case that it is possible to manipulate these genes into expressing themselves 'correctly' again, thus regaining health.  This is done by using specific, targeted supplements and diet based on one's genetic profile.

The problem with FGN is that it only addresses the "what" and "why" of nutrigenomics, not the all-important "how."  In that sense, it's a regression from Pathways to Recovery.  It's almost as if FGN was meant to be the first in a two part series, but there's no mention of another part.  So the book leaves the reader frustrated and wanting more.  Dr. Yasko gets the reader "charged up" to use her program, and then fails to give so much as a hint as to what the program actually is.  If she intended to leave the "how's" of nutrigenomics out of the book, she should have at least briefly offered the reader a guideline for further reading.  The book lacks a single sentence addressing the obvious question: "So where do I start?"

For those that have read Pathways to Recovery or some of Yasko's other writings, it's interesting to note the evolution of Dr. Yasko's theories.  For instance, the book contains virtually no reference to the role of RNA in the methylation cycle, or to Dr. Yasko's RNA supplements.  RNA and RNA supplements were a huge aspect of Dr. Yasko's protocol as of Pathways to Recovery.  It makes me wonder if she has discovered something that led her to quietly de-emphasized that aspect of her protocol.   

Overall, Feel Good Nutrigenomics would be great for anyone who can't decide if methylation protocols are worth pursuing.  But the problem is that most people who have gone as far as purchasing and reading a book on nutrigenomics probably don't need further convincing.  They need guidance on how to do it.  FGN does nothing for those who want to understand the protocol itself.  Ultimately, the promise of a "roadmap" never materializes, rather, the reader is left with a vague sense that a roadmap exists...somewhere.

I still think Dr. Yasko is a brilliant scientist and that her motivations are in the right place.  She is at the forefront of a very young science that will continue to increase in importance and popularity throughout all of our lifetimes.  Moreover, she seems to be a good person. To her credit, she addresses, head on, those who may have concerns about her motivations and financial incentives, in the last chapter.  I respect her for that, and I think she handled the situation well.  I believe her.

Here's hoping Dr. Yasko's next book is like FGN in that if further simplifies topics from her past writings, but that it actually covers the "how" of her methylation protocol.  Right now, her protocol is spread out across several of her books and literally thousands of posts on her online forum.  This needs to be consolidated, updated, and further simplified in one place.  (½)

This book should be considered an ME/CFS classic even though it's technically about autism.  By way of background: studies show that children with autism and adults with ME/CFS generally have the same or similar genetic polymorphisms causing a block in one of the body's key detoxification systems, called the methylation cycle. Why these SNPs would manifest themselves so differently in children and adults is not clear . But Dr. Yasko studied ME/CFS and other neuro-immune illnesses prior to her work with autism and, throughout her book, she speaks to both parents of autistic children and adults with ME/CFS.

Even if you're on a simplified methylation protocol, or no methylation protocol at all, you really should read this book.  If nothing else, it gives one an sense of the complexity of the biochemical processes that occur within the body, which argues in favor of a holistic approach not only to ME/CFS but to medical problems in general.  For those on simplified methylation protocols, this will help explain exactly why you're doing what you're doing, and likely will explain why you're not getting results (if you're not getting results.)

Unlike many other doctors & researchers who've written books, Dr. Yasko worked with a professional writer on this book.  As a result, she and her ghost writer manage to explain some very esoteric concepts in ways that a layperson can understand.  

It's difficult to find fault with this book, but if I had to criticize something, I would point to an occasional lack of specificity where doses of supplements are concerned.  Generally, Dr. Yasko warns that one should take the "recommended dose," but at times this idea becomes muddled.  For instance, she states that people with the CBS mutation should take only "limited amounts" of Alpha Lipoic Acid.  It's not clear what exactly limited means.  There are other examples where the exact doses need to be tailored to one's genetic profile, but no instructions are given how to do that.  But to be fair to Dr. Yasko, she does state, repeatedly, that one must implement this program with the help of a doctor and with frequent reference to the forums on her website:  

This leads to my one other, small criticism.  Although she repeatedly states that one should only embark on the program with the help of a physician, Dr. Yasko must know that this is unrealistic.  I live in one of the largest metropolitan areas in the world (greater Los Angeles) and, according to Google, there are no doctors in my area who can help with this.  (A few claim they can, but further investigation revealed they only have the capacity to help implement a small portion of the protocol.)  This type of treatment is simply too new and too poorly understood to be widely available.  I'm afraid most of use will be on our own with this protocol.  

But other than those minor issues, those book is an invaluable resource to ME/CFS patients.  I will continue to re-read and refer back to it frequently in the years to come.

Incidentally, the book is available as an (apparently) free download on the web.  (Here).  This is a wise choice by Dr. Yasko, as anyone who implements her program will end up spending plenty of money on her supplements.   Also, a bound version of the book is available in a kit along with a companion DVD and workbook from for $54.95.  The workbook is also downloadable 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.

I'll also say that I didn't think the book explained why dairy intake 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 catch the reader off guard.  But 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 I thought Wolf explained it in layman's terms perhaps better than anyone else. I must say, he makes a very convincing case.  I dare you to read this information and not be gung-ho about paleo.  Just like I did with Life Without Bread, I'm now trying to get 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.

In the end, I recommend it.  It's fairly brain-fog friendly and at the same time, absolutely 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)

The author of Love and Fatigue in America, Roger King, is an English novelist and professor who emigrated to the United States in the early 1990s to begin a new professorship at Eastern Washington University.  At the time, he was getting over a relationship break-up and looking forward to a fresh start in America.  But within his first year in Washington, he came down with ME/CFS and was soon forced to quit his position at the University.  The rest of the book follows King's life in the United States over the next decade, as he migrates from state to state, trying to find love and at the same time battling ME/CFS.  

Incidentally, as King explains in the introduction, the book is an "autobiographical novel," meaning that the majority of the book recounts true events in the author's life.  Whenever he's unable to remember details (often due to brain fog), he liberally fills in the blanks with his best and, sometimes, most creative approximation of the true events and/or dialogue.  

I'm having a hard time writing an objective review because, frankly, I loved it.  In fact, I probably would have loved the book even before contracting ME/CFS because I've always found it interesting to learn emigrants' fresh impressions of America.  King frequently finds new ways to give the American reader a fresh, humorous perspective on the county.  

Then, of course, King's musings on life with ME/CFS are instantly recognizable.  He has a way of summarizing the frustrations and paradoxes of life with ME/CFS in a way that will make any blogger (*ahem* myself) question whether there is anything new to say that King hasn't said better!  I began reading the book by highlighting all of the particularly quotable passages about ME/CFS, but was soon forced to abandon this when many pages were covered top to bottom in highlights.  

King's prose is pleasing and rhythmic--almost spartan at times--as he employs short sentences that are easily digestible to the brain-fogged reader.  Few chapters are longer than 4 or 5 pages.  Occasionally he breaks from prose altogether to give us a short chapter in verse.  When I've seen this done in the past, it sometimes signals an author who is trying too hard to add "artistic merit" to their work, but King somehow makes it work.  

If I were to find a criticism of the work, it would be that the 4th of 5 parts, entitled "Other States," in which King recounts a period of time where he wandered from state to state in a Jeep looking for his next home, seems disjointed and rushed.  Perhaps this was meant to mirror the disjointed feeling of that time in his life, but he loses the narrative thread.  In my opinion, the book would have been stronger without this section.  

King is also quite frank about his sex life, which didn't bother me. But I can see how other, more sensitive readers might place certain passages under the category of TMI - too much information.  

In my opinion, Love and Fatigue in America, should be on every PWME's to-read list.  It's the first and only book I've found that combines an interest in ME/CFS with a more general interest in good writing and entertaining storytelling.  (★★★★)

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 cathartic.  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 in fact, my experience with the book was somewhat of a Goldilocks dilemma. 

Too cold.  At times, it felt as if the book was attempting to elevate common sense coping mechanisms to the level of dogma, 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 the idea that 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.")   

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 who is able to articulate so many of your thoughts and and 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 highly recommend it.  (★★★★)

Unless you have formal medical training, when you enter the online ME/CFS world, you're likely to be overwhelmed by the unfamiliar medical terminology.  No subject is more confusing than the immune system.  It seems that no one writes about familiar concepts like, "white blood cells," but rather types and subtypes of white blood cells with strange alphanumeric names like CD8.  My goal in reading In Defense of Self was to build a basic understanding of these concepts.  For that, the book was perfect.

Author William R. Clark, a professor of immunology at UCLA, explains the basics of the immune system in a way that's understandable to a lay person.  If it were any more simplified, it might seem patronizing, and if it were any more detailed, it might read like a medical text.  It will be a useful reference book for anyone's ME/CFS library.  It has a glossary of key immune system terms which should prove handy in your travels across the internet. 

The book is divided into two parts.  Part 1 is an overview of how the immune system works, and Part 2 examines various enemies of the immune system--everything from microbes to cancer. While I found concepts applicable to ME/CFS throughout the book, one could easily skip Part 2.  Part 1 is a brief 58 pages, but is, in my opinion, the heart of the book.  However, if you decided to skip Part 2, I would at least read chapter 12 regarding "Autoimmunity," because it discusses a number of concepts that should be familiar to ME/CFS patients. 

In Defense of Self does have it's limitations, which are probably intentional given that it's supposed to be an overview.  Notably, there is no discussion of Th1/Th2 imbalance.  And, as one might expect, there is no discussion of ME/CFS whatsoever (although Fibromyalgia is briefly mentioned in the autoimmunity chapters.)  Still, it's well worth the $11.54 purchase price in my opinion.  (★★★★)

Obviously, the title is ridiculous.  Nearly every Amazon review of this book mentions it among curses and invectives.  I, myself, outfitted the book in a homemade paper jacket constructed from butcher paper before venturing out with it!  But, let's say we discuss what's actually inside.

The ME/CFS message board crowd is fairly critical of this book, and much of the criticism is deserved.  In his effort to make the book wide-ranging and comprehensive, Dr. Teitelbaum gives passing credence to a few truly inane theories of ME/CFS.  For instance, he discussed a study that supposedly showed an overrepresentation of child abuse victims in the ME/CFS population.  What?

He also gives too optimistic of a picture regarding the ease of, and chances of, recovery.  While I certainly don't doubt that many of the treatments he suggests are somewhat helpful--I know first hand that they are--there is no panacea.  People simply aren't recovering from ME/CFS in large numbers--not fully anyway.  But Dr. Teitelbaum's book leaves one with the vague impression that they are.  The statistics don't agree with him.

In spite of all this, I still believe that this book is the best ME/CFS primer for someone who's been recently diagnosed or thinks they might have ME/CFS.  Most other books about ME/CFS are more narrowly focused on one or two of the author's pet theories.  This is as broad an overview as you'll get.

For the newly diagnosed, this book will introduce a you to a new vocabulary, and allow you to at least begin to make sense of everything you're up against.  From there, you can start to create your plan of action; what tests to seek, and what treatments to try.  The book also leaves you with an idea of what you don't yet know.   It's a great place to start if you're new to ME/CFS (like I am), and I can anticipate it being a good reference book to refer back to when I'm considering new testing and treatments. (★★★)

This book is exactly what the title says: 50 short stories (3 to 5 pages each) written by people who claim to have recovered from CFS.  I read the book to try to learn which recovery strategies were credited most often.  In that sense, I suppose it was a small success because it lead me to take a close look at my diet and, eventually, to change it for the better.  (Diet was one of the most oft-mentioned cures).

But, my problem with this book is that anywhere from 1/3 to 1/2 of the stories were, in my lay opinion, dubious cases of "CFS."  Many of the authors seemed to be using their supposed CFS recovery stories to promote their businesses--usually some type of nutritional program or lifestyle coaching.  Others credited pacing and graded exercise theory (boooo, hisss.) One gentleman even claimed to have been healed after renouncing a Masonic curse!  Yes, I know it's not good form to second guess the diagnoses or treatments of others, but I couldn't help feeling that many of the authors didn't have the same illness that I have.  Wouldn't it have been better to call the book "25 Personal Stories" and leave out the witchcraft and thinly veiled advertisements?

Having said that, the spirit of this book isn't lost on me.  I understand that it's supposed to be inspiring for those who find themselves feeling hopeless in the face of ME/CFS.  If you're feeling like that, I would say, go ahead and read the book.  Just be prepared to like some stories and raise an eyebrow (or two) at others.  ( ★★)

Probably most PWMEs adhere to one type of specialized diet or another.  Most of these are low carbohydrate diets.  This book is basically the low carb Bible.  It was mentioned by several different authors in the Recovery from CFS book (reviewed above), and was one of the few useful suggestions in that book.

Even if you're already on a low carb diet, I would recommend this book because it so convincingly explains the correctness of your choice.  If I suddenly got healthy tomorrow and never had to think about ME again, I would still eat low carb because of the case laid out in LWB.  In fact, I sent copies to my family members because I want them to live longer and healthier lives too! (★★★★)

If you search the internet for books on Candida overgrowth, two books dominate the results.  One is The Yeast Connection, by William Crook, and the other is this one, The Yeast Syndrome.  They both have comparable reviews on Amazon (4 stars), but The Yeast Syndrome is recommended more often on Candida forums.

Unfortunately, both books were written in 1986 and haven't been updated since.  In fact, neither book covers the number one prescription drug for Candida, Diflucan, because it hadn't been invented when the book was published!  But in spite of these limitations, I would still recommend The Yeast Syndrome. It presents a 4 phase, holistic approach to healing candida, covering nutrition, immune system, prescription drugs and natural remedies.  This holistic approach meshes nicely with most general ME/CFS treatment plans.

Most other Candida treatment books on Amazon focus on a narrower approach, the one exception being a 2009 book called The Candida Cure.  I hadn't seen The Candida Cure mentioned on any of the Candida forums, and it only has 16 Amazon reviews, but I might read it later if Candida remains a problem for me.

For now, I would recommend The Yeast Syndrome to anyone who might have Candida issues.  The writing style is a little quirky--typical of books where a doctor tries a little too hard to dumb down his subject for the lay person--but the research seems solid and easy to follow.  (★★★★)

External Links.

Here are some links to other pages with ME/CFS book reviews:

Fiikus blog
Hummingbird Foundation

Crashing Again

I was doing well all week, with more energy than I've had since I first became sick in June.  My energy and mental clarity at the office were at almost pre-ME levels.  But unfortunately I crashed yesterday.

Throughout the week, my wife and I had been looking forward to Saturday's dinner reservations at new restaurant.  This would be one of our first times eating out since our daughter was born in August.  Then I awoke yesterday morning feeling like  I'd been hit by a nasty flu bug.  It was the same, familiar flu-like illness.

We still made the reservations, and I tried to forget about how I was feeling.  This dinner was important to my wife, as it was a celebration of her year-end bonus from work.  I'm glad I forced myself to go.  Seeing my wife smile and enjoy her few hours of freedom from the routine of breastfeeding and swaddling our baby was worth the struggle.  

As far as the causes of the crash, I have two theories.

1.  I took an oil of oregano capsule for the first time on Friday.  It is supposed to be powerful anti-fungal to fight candida, and boosts the immune system.  It often causes Herx reactions.

2.  I recently increased my B12 intake, and switched from the inactive to the active form of B12 (methylcobalmin.)    Supposedly when people start this protocol, their immune systems often "switches back on."  But another possibility is that the B12 is causing a deficiency in potassium or folate, as explained in this thread

3.  Then again, there's always the possibility that this is yet another unexplained crash--just part of the cycle of ME. 

I suspect that it's probably the oil of oregano, since I'd been on the active B12 for about a week already.  I'll lay off of it for a few days and then try it again and see if the same thing happens.

Saturday, January 28, 2012

How Much Is Too Much Vitamin C?

This is the second in a series of posts reviewing the benefits/risks of supplements commonly taken by people with ME.

When you hear about all of the benefits of vitamin C, especially for boosting the immune system, it makes you want to take as much as possible.  With vitamin C, I'm not too concerned about short term usage because it is so widely viewed as safe even at fairly high doses.  But some ME/CFS "gurus" recommend enormous amounts of vitamin C...up to 10,000mg per day!  It seems to me, this can't be safe for long term usage.   So, in this post, I'll try to determine the maximum safe dosage that can be take for extended periods of time--i.e. years at a time.

In the U.S., the recommended daily allowance (RDA) of vitamin C is 65mg/day for women and 75 mg for men.  (citation).  Most multivitamins contain anywhere from 5 to 10 times the RDA or more, so exceeding the RDA by even large amounts doesn't seem to be harmful.

But, I've seen at least one ME protocol that called for 4,000 mg a day, every day, and one that called for 10,000, for a limited period of time.

Here's a collection of quotes from different medical sites about the maximum safe doses for vitamin C:

"Some studies suggest that adults should take 250 - 500 mg twice a day for any benefit. Talk to your doctor before taking more than 1,000 mg of vitamin C on a daily basis." (Univ. of Mayland Med. Cntr.
"At least one study has suggested that very large vitamin C doses can cause rather than prevent oxidative damage to DNA in cells. The [US National Academy of Sciences] panel set a 2,000 milligram daily upper limit for vitamin C from a combination of food and supplements." (BBC article
"People can take up to about 1000mg safely."  (VitaminsDiary
"In 2000, the Food and Nutrition Board of the Institute of Medicine set a tolerable upper intake level for vitamin C at 2,000 mg per day. Taking more than 2,000 mg per day is likely to increase the risk of side effects." (Livestrong)
I could post more examples, but you'll have to take my word that the numbers 1,000 and 2,000 came up over and over.

My conclusion is to limit my intake to about 1,000 mg/day (1,333% of the RDA for men) on a normal day, and increase it to 1,500 only when I feel I may be getting sick....or, rather, more sick.

Friday, January 27, 2012

Keeping Track of My Supplements

Like most of us, I take a ton of dietary supplements:  Vitamins and mitochondrial support in the morning and mid-day (so as not to interfere with sleep), and minerals/herbs at night.  Prescription drugs as directed, of course.  While the routine quickly becomes second nature, I still find myself pausing occasionally to remember what I'm supposed to take at a particular time of day...especially in the morning, when my brain isn't yet fully engaged.

I wanted to make the whole process completely mindless, almost automated.  So I purchased a package of small colored dot stickers at an office supply store.  I assigned one color to morning, one to mid-day, and one to night.  

I love this system.  It has eliminated the mental taxation from my daily supplement routine, and I would recommend it to anyone.  Well, maybe not to the color-blind.    

Tuesday, January 24, 2012

Pregnenolone Supplementation Risks/Benefits

Today, I'm starting a series of posts where I review each of my supplements to explore the risks, benefits, and doses of each. For each, I'll weigh the pros and cons and try to determine "the ME/CFS web world's" consensus on the topic. To be clear: I have no medical training -- I am simply summarizing what I've read on the internet. 

I'll start with hormone supplements since I've heard that messing with the endocrine system is fraught with peril.

First up: Pregnenolone.

Why Supplement Hormones for ME/CFS?  

The theory is that ME/CFS is a multi-system disorder, pointing to a defect in the hypothalimus.  The hypothalimus controls the endocrine system (hormones), immune system, nervous system, and mitochondrial energy.  Many ME treatment plans call for simultaneous support of all four systems as a way of, sort of, taking the stress off of the hypothalamus, allowing it to start functioning properly on its own again.

Personally, my pregnenolone levels were one of the lowest of all my hormone levels when tested in December.  The lab's reference range is 13 to 208 ng/dL.  (The reference range for males is 10-200). (Citation) Mine was a mere 23 - in the bottom 5%.

What is Pregnenolone? 

Pregnenolone is a steroid hormone the body makes as a precursor (the raw material) for other hormones, such as progesterone, DHEA, mineralocorticoids (which regulate electrolyte balance), corticosteroids (which influence inflammation and metabolism), estrogens, and testosterone. (Citation)  Basically, it's the essential building block of the other steroid hormones.

Risks / Concerns  

According the the American Cancer Society, "Very little is known about the safety of the supplements or the effects of long-term use. Some laboratory studies in cancer cells and animals have suggested that pregnenolone may stimulate the growth of hormone-responsive cancers such as prostate and breast cancer....High doses may cause aggressiveness, irritability, trouble sleeping...It also may...lower the levels of HDL, or "good," cholesterol, which could raise the risk of heart disease. Other possible side effects include acne, heart rhythm problems, liver problems, loss of hair from the scalp, and oily skin." (Citation)

I have also read that weening off of Pregnenolone supplementation can cause depression.

I have concerns about increasing any "steroid" as steroids tend to decrease immune response.  I am not certain, however, if this applies to "steroid hormones."  It turns out, this is a very complex question with no clear answers.  Thus far, only animal studies have been conducted on this topic, but those studies found that steroid hormones actually  boost immune response.

I also worry that the increased pregnenolone will convert to female hormones such as estrogen and progesterone.  Once inside my body, how do I know which hormones it will convert into?  On the other hand, this website claims that that concern is unfounded.

Possible benefits  

Pregnenolone is supposed to be a powerful memory aid and enhancer of cognitive function.  I can state from experience, this seems to be true.  Within a few days of beginning 100 mg dosages of pregnenolone, I started having exceptionally productive and clear headed days.  I felt very mentally alert.

Other sources making a strong case for the benefits of pregnenolone supplementation are here, and here.

For what it's worth, pregnenolone is sold as an over the counter supplement.  Anyone can take it in any amount, which tells me it's side effects can't be too harmful.  Right...?


Dosage recommendations are all over the map.  Because Pregnenolone is a supplement and does not require FDA approval, nobody has ever established dosage limitations. (Citation).  My doctor prescribed 100 mg/day.  Dr. Tietelbaum also recommends 100mg.  I've seen recommendation of as high as 200mg.

On the other hand, pregnenolone is typically sold in maximum quantities of 50mg, and several sources state that the correct dose is a mere 5 to 30mg, with frequent "holidays" to give your body time to start anew.  This doctor insists that the correct dosage is only 1-5mg, and that higher dosages are unsafe, but he doesn't provide any citations to research.  The bottom line is, there is no consensus.

Pregnenolone is supposed to be taken first thing in the morning, before a meal.

My Conclusion  

I remain uncomfortable with the idea of supplementing pregnenolone in the long term, especially at dosages of 100 mg.  But I will at least continue taking it until my next doctor's appointment in two months, and then talk to my doctor about reducing the dosage to something minimal, like 10mg, with regular "holidays."

If I continue to take it for more than, say, one year, I will begin regularly testing my levels of dihydrotestosterone, to ensure that it is does not enlarge the prostate.

I Donated $ Today

I donated a small sum to help keep the Phoenix Rising websites and forums going.  It wasn't much, but it's more important that every person with ME/CFS try to contribute something.

As far as donating to research (which is far more important, since ME/CFS research gets virtually nothing from the government or from drug companies), I haven't received a response to my inquiries to CFI.   I'm looking into a Plan B, and will probably either choose Mt. Sinai in New York (because it is a start-up and needs support), or Dr. Garth Nicolson's Institute for Molecular Medicine in Laguna Beach (because it is local and does important work.)

24 Hour Urine Test

The Nephrologist (kidney doctor) and I are still trying to solve my kidney-area pains. As as sort of last resort, he ordered a 24 hour urine test, where I had to collect ALL urine I passed within a 24 hour period--and store it in my refrigerator! Right now, I'm at Quest Diagnostics dropping off the sample and waiting to give a blood sample.

You can imagine how relieved my wife is to get that giant jug of urine out of her refrigerator!

If anyone asks, I'm carrying around a jug of gasoline. 

Monday, January 23, 2012

ME Testing/Treatment Roadmap

One of the posters on the Phoenix Rising (PR) forums recently referred me to this ME/CFS Testing and Treatment Roadmap.  It is an excellent guideline for beginners, and provides a clear step-by-step plan to getting the right diagnostics, and then guides you through treatments based on the test results.

I found this document particularly useful for resolving unanswered questions about the meaning of various IgG antibody levels.  I had read that high enough IgG levels can indicate, not just past infection, but a reactivated, current infection.  But I was never able to find the threshold IgG numbers that separate past infection from reactivated infection.  Now I have them.  

Measuring Improvement

When I've having a setback, it's easy to forget the progress I've made.  And so, at times like that, it becomes important to resurrect memories of the earlier phases of my battle with ME--to remember how far I've come.  In this post, I'm creating a list of dead or dying symptoms so that I can refer back to them when necessary to remember that I am, in fact, improving...albeit slowly.

As I think back over the last six and a half months, it seems there were two previous phases of my illness.  During the first two and a half months, the ME was in its acute phase, and I had a number of symptoms that I haven't experienced since.  The next two and a half months saw some improvement, but not as much as after I began my latest supplement regimen on about 12/5/11.  In the list below, I note which symptoms belong to which phase, with the acute phase being marked by (*), and the second phase by (†).

Long lost symptoms/experiences:

1.  Kidney-area pain so severe that I had to avoid sleeping on a certain side.  I also had to drive with my back separated from the driver's seat because the seat inflamed the pain.*
2.  Fatigue so severe that walking 150 yards to the cafeteria at Hoag Hospital seemed questionable.*
3.  Nausia and lack of appetite.  I used to keep a column on my health chart for nausea.  After changing to a low carb diet, I no longer even have to fill in that column because the rating is always "0." *†
4.  The distinct feeling, on two occasions that there was "poison in my veins." *
5.  Bloated stomach on two specific occasions during the acute phase, accompanied by constant unrest and gurgling in the intestines*
6.  Muscle twitches.*†
7.  A feeling of tingling or numbness in my extremities, especially the fingers when doing fine motor skills like typing.  Also, numbness in the legs while walking.*†
8.  Extreme light-headedness after standing.  (I still experience this symptom more than before ME, but much less frequently and severely as in phases 1 and 2.)*†
9.  Sore throats.  I used to suffer at least one sore throat a week.  After beginning the ImmunoStim supplement, I no longer get them.*†
10.  White spot on left tonsil.  The sore throats were often accompanied by a white spot on my left tonsil, about a 1/2 centimeter in diameter.  While I still occasionally get this spot, it is smaller and not accompanied by a sore throat. *†
11.  Coloring.  My co-workers used to comment that I had lost all coloring in my face on days when I was feeling particularly bad.  Now, my sickness no longer shows outwardly (other than the lost weight).*
12.  Chills.  I used to get the chills occasionally; sometimes so bad that no matter how many layers I wore, I would still shiver.*
13.  Unusually cold hands and feet.  This started with my illness in July and improved when I started with the thyroid supplementation.  While I still experience it sometimes, it is not nearly as often.*†
14.  A few episodes of green bowel movements. WTH?*
15.  One month of pale, loose, floating stools.*
16.  Two episodes of extreme pain in my groin area, both lasting about 24 hours.  Both were so severe that I had to walk with my legs spread farther apart. (Talk about embarassing!)*
17.  Low blood pressure.  It used to be about 99/68.  More recently, it has been about 120/80.*†
18.  Chest pains.  I used to get these bizarre, stabbing chest pains that would come out of nowhere and stay around for about 24 hours.*
19.  Swollen neck/swollen lymph nodes.  Also stopped after I began the ImmunoStim.*†
20.  Post nasal drip.  For about a 2 months in the second phase, I had constant post-nasal drip.  This stopped when I cut down on dairy and started treating Candida more aggressively.†
21.  Cough.  I had a light cough throughout the first phase.*
22.  Weak urine stream.  During phase 1, my urine would, quite literally, drip out at times.  It has since normalized.*
23.  I had days where I felt too weak to stop for gas on the way home from work.  On other days, I felt too weak to get in my car to grab lunch.  A single trip to the supermarket, or to a restaurant with my wife was once a taxing event. *†
24.  Headaches lasting about an hour at a time.*†
25.  Insomnia.  Prior to December, I would get an episode of insomnia about once or twice a week.  On these nights, I would find myself either unable to sleep or in a state of very light "cat-napping" all night long.  These episodes would absolutely ruin me the following day.  They improved about the time I began supplementing magnesium, and then greatly improved when I started taking tiny amounts of melatonin each night.*†
26.  Swollen lymph node under the right arm pit.*

So, the good news is that I have basically cut my list of symptoms from a maximum of 16 at one time to 3: Fatigue, kidney-area pain, and shortness of breath.  These 3 symptoms I call "my big 3" because they have always been at the top of my list in terms of severity and frequency, and now they are the only three.  This makes it much easier to talk to doctors without them seeming overwhelmed or skeptical.

The bad news is that I haven't made much headway against the big 3.  For a time it appeared that the vitamin D3 was helping with shortness of breath, but recently, it has come back as strong as ever, even while at complete rest.

With regard to the fatigue, I will say that my crashes are shorter in duration and severity.  Whereas I used to crash for 4 or 5 days straight, my crashes now only seem to last a day or two, and I'm not quite as incapacitated as before.  On the other hand, there seems to be a sort of ceiling to my recovery because I can never pass the 90% barrier, no matter what I do.  And I rarely get close to that.

Now, let's see what we can do to destroy the big 3!  Can you sense their fear?

Wednesday, January 18, 2012

Two Coping Strategies

I decided to allow myself to write about the psychological impact of adjusting to life with ME.  At first, I shied away from from that topic because I didn't want the blog to devolve into my own private "pity party"--just a place where I vent my frustrations.  I wanted to keep it mostly factual, so that when (not if) I recovered, others could consider duplicating my path.  But the bottom line is, ME has brought a significant change in my quality of life and outlook, and I think it's legitimate to discuss those issues here.  Instead of just venting, however, I want to discuss what I'm actually doing to help me adjust.

The Current Problem.  I find I have a tendency to idealize my former, healthy self.  During the quiet times of the day, my mind is often racing, scheming, and slightly obsessing over getting back to that person I used to be.  I've always been someone who enjoys solving problems (whether they be mine or others'), and a lifetime of habit has trained me to think in a problem-solving pattern.  It's as if, on some level, I believe that if I just think...hard...enough, I can solve this little ME problem.

Of course, that's not realistic and not a productive way to spend my mental energy.  So I've been consciously changing that pattern of thinking to something more productive and healthy.  So far, I've come up with a few things that help.

1.  Don't idealize my former self.  An ideal: that's just what it is.  I have to remember that my pre-ME life was not perfect, and I had other problems.  Frankly, my diet and sleep habits were so atrocious that, in a few small ways, I'm actually healthier now.  I rarely felt rested, in the sense of having gotten enough sleep (which is vastly different than the body fatigue I have now), and I usually had some nagging injury or another from all my extra "curricular" activities.  This may seem like a small consolation, but it's significant to me.

I'm not a Buddhist, but I remember reading somewhere that the Buddha said, "life is suffering,"  and apparently this mantra is central to Buddhist philosophy.  With my apologies to Buddhists for oversimplifying things, I take this to mean that "if it's not one problem, it's another."  Life always comes with problems, and new problems have a way of pushing other problems and would-be problems out of the way.  The lifestyle adjustments I've had to make because of ME will inevitably avoid other types of "suffering" that would have come with my old lifestyle.  By now, I might have thrown out my back doing carpentry work around the house, or torn my ACL while surfing, or been hit by a car, or continued the long, slow destruction of my body with unhealthy eating habits.  The point is, I'm not going to waste time lamenting what my life could be like right now if I hadn't gotten ME because that's an unknowable ideal.

2.  Make New Goals and New Plans.  I recently read the biography of Steve Jobs, the founder of Apple Computer, and something interesting struck me.  When he was terminally ill with cancer and knew he would die within a few months, he found that, in order to avoid despair, he had to keep making long term goals--knowing full well that he would not live long enough to attain them.

In recent months, I've found myself reluctant to make long-term plans...not because I thought I would die like Jobs, but because I can't predict what my physical condition will be in the future.  Summer vacations?  Camping?  Work projects?  Who knows if I'll be healthy enough when the time comes?

But I've found that it's not healthy to stop making plans and setting goals, even if I'm not ultimately able to fulfill them.  If the time comes and I'm not healthy enough, people will understand. I can deal with it then.  In the meantime, it's critical to make plans just as I always have.  For me, happiness is strongly correlated with planning for the future.

In terms of goals, my goals now may be different, but it's important that I make them of equal value. Equal quality.  While, before ME, I might set goals in say, athletics & fitness, now I set goals like: write a book for my daughter compiling life's anecdotes and lessons.  I don't see either goal as qualitatively better than the other...the latter is simply one that I can handle in my current situation.  So I'm changing goals, not downgrading or eliminating them.

I have a few other thoughts on this subject, but I'll have to save those for another time.  Thanks for reading!

Tuesday, January 17, 2012

Out with the Diflucan

I decided to pull the plug on the Diflucan experiment today - or at least temporarily suspend it. I'm two weeks into a four week course and the pain in my kidney area is increasing a little every day. I not certain it's related to the Diflucan, but I can't  risk damaging a vital organ. There are other, natural ways to treat Candida.  I'll keep up with the diet and add coconut oil and Pau d'arco tea.


Monday, January 16, 2012

Vitamin D supplementation - a dilemma

The most frustrating thing about researching ME treatments via the internet is the total lack of consensus.  You may be able to deduce certain basic "truths"--remedies helpful to a mere plurality of patients--but it takes an enormous time investment to separate these tidbits from the rest.  Some PWME's believe this lack of consensus is because we all have different etiologies--different origins of our ME.  The theory goes: ME is a multi-system dysfunction, and some people need to prioritize certain functions over others.  Other PWME's believe we're still talking about 2 or 3 or more distinct illnesses.

Here's an example of the problem:  Vitamin D.  Many PWME's supplement vitamin D or eat foods rich in Vitamin D and increase sun exposure.  I myself am supplementing 10,000 IU's a day to get my  levels up into the 60's and 70's.  Vitamin D was cited by my doctor as one of the most important factors to boosting the immune system.

But there's at least one researcher , Trevor Marshall, who believes that Vitamin D supplementation is harmful.  Vitamin D is, technically, a steroid.  Marshall believes that, as a steroid, vitamin D actually suppresses the immune system.  I would love to be able to dismiss this theory as quackery, but the seed of doubt has already been planted.  At least one part of Marshall's article seems to have direct applicability to me:

"Epstein Barr virus – In a 2010 study of pregnancy-associated breast cancer, higher levels of 25-D were positively correlated with serum antibodies to Epstein Barr Virus, suggesting that EBV is able to better proliferate in patients who take vitamin D"

Honestly, after reading that article, I don't know what to do.  As a lay person with no medical background, I simply don't have the tools to separate fact from fiction.  Maybe no one does.  This might be one of those medical issues that requires further research before anything can be conclusively resolved.  So, as of right now, I'm almost inclined to stop taking the D3 until I get further clarification.

It's hard enough sticking to a supplement routine when you're 100% convinced that it is will be helpful, or at the very least, not harmful.  With this kind of doubt makes me question my entire regimen.  What else could be potentially harmful?   While I think I've felt slightly better in recent weeks, it is impossible to pinpoint the reason.  It could be any one of the 10 or so supplements I take.  Or none at all.

For now, I simply have to bookmark it as one more thing to research later.

Update:  I found this thread discussing the Marshall theory of Vitamin D.  After reading it, I find myself more convinced by the arguments and links provided by Ted Hutchinson than I am by Marshall.  But, still, that nagging doubt will always be there in the back of my mind....

Saturday, January 14, 2012

Candida Diet

I started a Candida diet yesterday, and I am enjoying the thought that, with each passing day, I am killing more yeast.  Since I was already adhering to a low carb diet, the transition was smooth.  After all, the Candida diet is a low carb diet, with a handful of additional restrictions.  As it turns out, before starting the Candida diet, I was continuing to eat a few foods that were probably feeding the yeast.  The worst culprit was vinegar--which is ubiquitous in condiments and salad dressings (including the creamy kinds, like Ranch) and anything pickled.  Others included peanuts, seeds, and mushrooms, all of which can carry various types of mold that encourage the yeast.

There are dozens of Candida diets on the internet, and the basics of each are essentially the same.  Most are phased, gradually introducing new foods as you begin to win the battle against your yeast.  (Most are also vague about when you should transition from one phase to another!)  But there are also some significant differences.  A few recommend starting with...I'm not kidding here...a coffee enema.  Others insist that the first stage must begin with a liver cleanse.  For me, I'll start with the plan recommended in the book The Yeast Syndrome, by Trowbridge & Walker (which seems to be the Candida bible).  The Yeast Syndrome plan combines prescription drug treatment (check), with diet (check), and "holistic approach"....  I'll admit I need to do some further reading on the holistic aspect, but I hope it doesn't involve ordering Starbucks in an enema bag!

Wednesday, January 11, 2012

Immune System Imbalance in ME

In researching ME, I kept coming across references to scientific findings of an imbalance between th1 and th2.  I didn't know what that was about, but I had bookmarked it in my mind as something to research in the future.  In the meantime, another ME/CFS blogger, Sue Jackson, wrote a post today that I think clearly summarizes the issue in lay terms.  So I'm going to link to her post.  It is a quick, easy read.

Focusing on Candida...for now

Lately, I've been growing more and more convinced that Candida is a key to my specific ME etiology--that if I can get a handle on the Candida overgrowth, the other issues might start falling like dominoes.  That's the hope anyway.

At my December 6th appointment with Dr. W, he said that I had Candida overgrowth because he could see the telltale white film on my tongue, and because "most people with ME have it on some level."  I was skeptical, but agreed to start taking probiotics supplements.  (Probiotics are helpful, anti-inflamatory bacteria that help to restore the correct balance of microbiological life in your intestines, and combat the bad yeasts and bacteria, like Candida.  Also found in yogurt.)

To my surprise, when I returned to Dr. W this month, blood tests revealed that my Candida antibody levels (all three types IgM, IgG, and IgA) were "off the charts."  It seemed I needed to take Candida more seriously.  So I placed it at the top of my list of concerns, and we started me on 1 month of prescription Difulcan to battle the Candida.

This week, I've been focusing on my concern that, for over a month, my urine has been foamy.  Beginning on December 7th, I noticed that a layer of bubbles would form in the toilet bowl when the urine hit.  This layer would often grow to cover the entire surface area of the toilet water, and would not dissipate until I flushed the toilet.  My initial internet research indicated that this is caused by excess protein in the urine, which means that the kidneys are being inundated with undigested protein.  This, according to the internet, could cause kidney problems over time.  My natural assumption was that this was brought on by my switch to a low carb diet.  But, as usual, the top hits on any internet search aren't always the best answer...just the easy answer.

As I thought about it more, I wondered why the foam didn't come on gradually as one would expect for someone who gradually switched to a low carb diet.  It simply appeared one day, out of the blue...or, er, yellow.  Then I remembered that the foam appeared the day after I started taking pro-biotics.  So I searched the words "Probiotics and urine foam."  What I found surprised me.

I retrieved a dozen or so threads from Candida web forums, started by people who'd experienced foamy urine immediately after taking probiotics.  The general consensus from responders, some with medical backgrounds, was that the foam indicates Candida die-off.  It is a sign of the dead yeast being expelled through the kidneys.

As I review these Candida forums forums, I realized two things, one good and one bad:

The Good:  The foam in my urine is probably a good thing - a sign that the probiotics (and now the Diflucan) are working.  Just in case, I'm going to visit a Nephrologist next week anyway, to check kidney function.

The Bad:  Candida, it seems, is an absolute monster.  Killing it is not as simple as taking a single course of Diflucan.  For many people, it seems be something that they have to actively control of the the rest of their lives, through diet and supplements.  The Candida forums are bursting with hundreds of treatment suggestions, from special teas to liver flushes to drinking apple cider vinegar!  It's overwhelming.

As so often happens with ME/CFS patients, I've opened a door to a new topic, and I'll have to begin exploring all of the research and treatments behind that door.  This means ordering more books, exploring more forums, and generally trying to filter out all of the noise and narrow in on a few long-term treatments/diets that seem to be the consensus best.

Tuesday, January 10, 2012

How I Handle “The Wikipedia Problem”

The Problem:  Wikipedia's entry for ME/CFS/CFIDS continues to mischaracterize the condition, suggesting that it may be psychological. It incorrectly states that "There are no characteristic laboratory abnormalities to diagnose CFS." This, of course, is simply untrue. Making matters worse, Wikipedia only discusses three treatments, all psychological in nature: Cognitive Behavioral Therapy (CBT), Graded Exercise Therapy (GET), and Pacing, along with a brief "Other" section, which discusses antidepressants. This reflects the thinking of a handful of CFS researchers from decades ago.

The problem is that when you tell someone you have ME or CFS, they often look it up on the internet. When one searches "Chronic Fatigue Syndrome," the first hit is Wikipedia. (Also on the first page of results is the Mayo Clinic, which, like Wikipedia, erroneously lists GET and CBT as on the only treatments for ME/CFS).  Now the person you've told about your ME/CFS thinks that you may have a psychological defect…or that you're simply too lazy or unmotivated to participate in life's activities…or that you're some kind of hypochondriac attention seeker.

Why Wikipedia Won't Change: Wikipedia is normally an "open-source" project, where anyone can edit an entry, provided they include supporting citations. But the ME/CFS entry is locked. Any attempt to correct it is immediately deleted. The story behind this unusual situation reads like a melodrama, and it would almost be funny if it weren't so unfortunate.

In the late 1980's and early 1990's, when relatively little was known about ME/CFS, a British psychiatrist named Simon Wessely adopted ME/CFS as his pet project and began conducting psychological research on people who had been diagnosed with it.  He concluded that the symptoms of ME/CFS are psychosomatic, and that the only thing standing between ME/CFS patients and good health was their unwillingness to improve. In his interviews and speeches, he implies that ME/CFS patient are mental weaklings who simply can't deal with the challenges of the modern world.

Mr. Wessely then built his career and reputation on this premise. His papers were accepted for publication; he received research funding; and he developed a version of CBT for ME/CFS which became lucrative for him. He became a sort of minor celebrity based on his work. He also became what one publication called "the most hated man in Britain," because of outrage from ME/CFS patients.

In the years following, a group of CFS activists waged an internet war against Wessely, which included repeated attempts to deface his personal Wikipedia entry—the entry for "Simon Wessely," not ME/CFS. After growing weary of this battle, Wessely appealed to Jimmy Wales, the founder of Wikipedia. It is unclear whether Wessely and Wales had a preexisting relationship, or whether one developed after the fact, but it is clear that Wales has since been described as a big supporter of Wessely. In fact, Wessely's appeal to Wales purportedly led to Wikipedia's creation of its "Biography of a Living Person" (BLP) policy, in which edits to BLP's are strictly scrutinized and often erased by Wikipedia editors.

None of this would be a problem if Wikipedia hadn't also applied the same or stricter standard to the ME/CFS page. (ME/CFS, of course, is not a living person.) Many efforts have been made to update Wiki's ME/CFS page, including full citations to respected medical journals. These legitimate efforts are always deleted, usually within minutes.

My Response: First, I should mention that I only tell people about my ME diagnosis on a "need to know" basis. This is a personal choice, but I simply don't find the need to explain it most of the time. My ME is mild enough that I'm able to continue working and I usually appear healthy. But situations inevitably arrive—like last week where I was invited on an annual snowboard trip with some friends—where I have to fess up. In these situations, I will be honest about the ME. And when the person expresses some curiosity about it (which they always do), I use the opportunity to educate them.

The tricky part of educating someone on ME/CFS is keeping it general enough for them to understand. Most of us with ME/CFS have acquired a whole new medical vocabulary, and can rattle off a long list of symptoms and facts. But this makes people's eyes glaze over and they're bound to forget most it. I try to keep it simple by mentioning a few brief points:
  1. 1.    It feels like I have the flu…all the time.  This helps people understand that we’re not talking about minor fatigue or sleepiness.  I might also mention that there are “dozens” of other symptoms, but I don’t go into details unless asked.  The seriousness can be conveyed by tone without sounding like you’re seeking attention or sympathy.
    2.  It is a documented immune system dysfunction.
    3.    I often state that ME was “formerly known as chronic fatigue syndrome, before more recent research finding.”  While plenty of people still call it CFS, I characterize the term as outdated, which I believe mitigates the harmful information found under CFS entries on the internet.   
    4.    Without specific reference to Wikipedia, I inform people that “much of the information on the internet is outdated.”  I explain that the information is outdated because of “a wave of new research.”  In reality, the research isn’t all that new, but this explanation is better than trying to convey the convoluted Simon Wessely/Wikipedia explanation.