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

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

Thursday, May 31, 2012

Crashed frog MEmes

More MEmes

Please feel free to copy/paste any of the MEmes I post here into any message board conversations at the opportune moment.  That's what they're for, and that's why I'm making multiple variations on each you can drop the right meme when the situation arises.  :)

Wonka MEmes

Lord of the Rings MEmes

Or, if you prefer....

Tuesday, May 29, 2012

Quotes applicable to life with ME/CFS

In April, I linked to a list of quotes about ME/CFS.  I stumbled upon that list while gathering quotes that weren't necessarily about ME/CFS per se, but quotes that I felt would resonate with many PWMEs.  I've finally finished gathering those quotes, so here they are.  These are mostly quotes about illness, health, and facing adversity.  I hope you find one or two that speak to you.

He who has a 'why' to live, can bear with almost any 'how' ~ Friedrich Nietzsche

The most important thing in illness is never to lose heart. ~Nikolai Lenin 

Be careful about reading health books. You may die of a misprint.  ~ Mark Twain

Modern medicine is a negation of health. It isn't organized to serve human health, but only itself, as an institution. It makes more people sick than it heals.  ~Ivan Illich

The art of medicine consists in amusing the patient while nature cures the disease.  ~Voltaire [I've met a few doctors who must have studied at the Voltaire School of Medicine.]

A man is insensible to the relish of prosperity until he has tasted adversity.  ~Rosalind Russell

Effective health care depends on self-care; this fact is currently heralded as if it were a discovery.  ~Ivan Illich

Treasure the love you receive above all. It will survive long after your good health has vanished. ~Og Mandino

Adversity has the effect of eliciting talents, which in prosperous circumstances would have lain dormant. ~Horace

Adversity is the state in which man most easily becomes acquainted with himself, being especially free of admirers then.  ~John Wooden

A bad cold [or ME/CFS] wouldn't be so annoying if it weren't for the advice of our friends. ~Kin Hubbard 

Eat right, exercise regularly, die anyway. ~Author Unknown

A sad soul can kill you quicker than a germ. ~John Steinbeck

They claim red meat is bad for you. But I never saw a sick-looking tiger. ~Chi Chi Rodriguez

Physical ills are the taxes laid upon this wretched life; some are taxed higher, and some lower, but all pay something. ~Lord Chesterfield

Sickness comes on horseback but departs on foot. ~Dutch Proverb, sometimes attributed to William C. Hazlitt

The appearance of a disease is swift as an arrow; its disappearance slow, like a thread. ~Chinese Proverb

The longer I live the less confidence I have in drugs and the greater is my confidence in the regulation and administration of diet and regimen. ~John Redman Coxe, 1800

Fresh air impoverishes the doctor. ~Danish Proverb

Health is like munny, we never have a true idea of its value until we lose it. ~Josh Billings

Gold that buys health can never be ill spent. ~Thomas Dekker, Westward Ho, 1604

From the bitterness of disease man learns the sweetness of health. ~Catalan Proverb

There is something in sickness that breaks down the pride of manhood. ~Charles Dickens

Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. ~Susan Sontag, Illness as Metaphor, 1977

Sunday, May 27, 2012

Best article I've read on improving Th1 immune response

I've been looking for a list of all foods and supplements that support the Th1 side of the immune system.  At the same time, I also wanted to know which foods and supplements to avoid because they stimulate the Th2 side.  I finally found this article, which provides a fairly exhaustive list of both.  Granted, I've never heard of the doctor who wrote it (even though his practice is a short 20 minute drive from me), but his article seems thoroughly supported by citations to reputable publications.

[5/29/12 update:  This article from also contains a similar list near the bottom of the page.  There are some interesting additions, like noni juice, thyroid medications, and something called "Neem."]  

Wednesday, May 23, 2012

Downfall parody: the CFS version

Yesterday, I was reading a list of the best internet memes of all time, and it occurred to me that a lot of memes are absolutely ripe to be modified for ME topics.  I think I'll start adapting them and posting here on my blog from time to time.  I'll call them MEmes.

Here's my contribution to the Downfall parody genre.

Blogger will only embed the video in this small format.  I suggest you click the YouTube logo on the bottom right of the video and view it directly on my YouTube page.

Monday, May 21, 2012

Unpredictability of crashes - the upside

I'm starting to realize that recovery from crashes can be just as unpredictable as their onset.

Last week I was crashed all week--which, for me, means barely being able to drag myself into work and back home again.  Whether this crash was a reaction to the increased dose of Equilibrant, or just another crash, I'll address in another post.

On Thursday, my wife, daughter and I boarded an airplane for a weekend trip to San Francisco.  The trip was to involve a wedding on Saturday, a family reunion on Sunday, and the usual rigors of travel.

So there I was in the airport on Thursday, in the midst of a crash, thinking that my prospects for pulling out of the crash seemed dim.  Some people say you have to be a little crazy to travel with an infant, and here I was attempting it in the middle of a crash.  It seemed so many factors were working against me:

-Already in a crash
-Lugging baggage through long airport concourses
-About to face the crash-inducing altitude of air travel the dirty cabin air
-...followed by 2+ days of driving all over the Bay Area.

But to my surprise, the crash gradually began to lift starting Saturday morning.  By the time the wedding began on Saturday afternoon, I felt pretty decent.  Of course, drinking and dancing were out of the question, but I found that I didn't miss them as much as I'd expected.  I even attended the informal after-party at a local bar.  Still, I thought, the odds are that this will catch up to me the following morning.

Well, it didn't, and I felt just as lively at Sunday's family reunion.  We're back home in Southern California now and the rigors of the trip don't seem to have taken a toll on me.  I don't know what to make of it.  Every time I think I'm starting to figure out ME's patterns, its cause/effect relationships, it surprises me.

For now, all I can do is remember to be thankful and to enjoy every second of these times when I'm not crashed.

Wednesday, May 16, 2012

IACFS/ME releases an excellent primer for doctors

The International Association for CFS/ME recently released "A Primer for Clinical Practitioners," intended to educate doctors on ME/CFS.   The main body of the document is about 25 pages in PDF format.  Within those 25 pages, the IACFS/ME summarizes most key topics, from terminology, to etiology (causes); from diagnosis, and treatment, to related conditions.

Based on its title, the primer is meant to be used by doctors only.  But I don't see why it shouldn't be given to anyone who needs to know more about ME/CFS.  The information is presented in a plain, straightforward manner.  Honestly, a fourth grader could understand this material.  Why not send a copy to your family, your employer, or anyone who you'd like to "get it"?

The IACFS/ME requests a $15 donation, but you don't have to donate to gain access to the document.  I did, but only after reading it and satisfying myself that it is a quality product.

If I had a criticism of the primer, it would be the omission of certain testing recommendations.  While Seciton 3:1 gives a good summary of immune system abnormalities, Tables 1 and 2 (laboratory testing)  don't mention tests of Natural Killer Cell activity, CD4/CD8 counts, or even antibody tests for related infections like EBV, CMV, HHV-6 etc.  But, overall, it's an excellent resource and something worth sharing with others.

Looking forward to anniversary, oddly...

In a weird way, I'm looking forward to this summer and the anniversary of my onset of ME/CFS.  Let me explain.

I deal with the loss of quality of life fairly well on most days.  I believe evolution has equipped humans with a remarkable ability to adjust, mentally and emotionally, to new circumstances.  I think this innate ability is so hardwired into our brains that it sometimes plays with our sense of time.  Have you ever said, "I can't believe that X event only occurred last year? It seems like ages!"

After the first four or five months of my illness, it became apparent that I was "in this for the long haul."  So, at most times, I don't even think about what life used to be like.  In some ways, it feels as if I've always dealt with this if it's just another fact of life.  But one thing keeps interrupting the flow:  the anniversaries of last year's big events.

December arrives, and I think: "Gee, last December, I was able to catch a flight without crashing"
Then January comes, and I think: "Last January, I was on a ski trip with my buddies"
Then: "Last April, I was sipping Margaritas in Cabo"
Then: "Last May, I didn't have to worry about whether I'd feel well enough to attend the annual family picnic"
And so on...

These are the thoughts that bring a little sadness into an otherwise pleasant day.  So, while I don't look forward to knowing that I've been sick for an entire year (and I know that's mere child's play to some of you), I want to move past these regular reminders of what I was able to do last year.  

It's not that I don't have hopes for the Equilibrant--I do--but it's unreasonable to expect an instant and full recovery.  (Dr. C's words, not mine.)  If it works and re-balances my immune system, it will take time.  And who knows what level of functionality it might restore me to?  Dare I dream of 100%?

Until then, it's best to look forward to the future--even if it IS a future with ME/CFS.

Monday, May 14, 2012

Study mentions green tea as **bad** for ME/CFS

This research article regarding the development of a home monitoring method for Th1/Th2 imbalance has been mentioned on some of the forums lately.  It sounds as if the test itself is a long way from being something that the average person can buy/use on a regular basis.  But, what's interesting is that the article mentions green tea as being bad for PWMEs because it stimulates the Th2 side of the immune system -- exactly what I don't want, according to my doctor.

I find this particularly interesting because I drank a cup of green tea (decaf.) yesterday afternoon and woke up feeling horrible today.  Still do, in fact.  I had just climbed out of a brief two-day crash,  the brevity of which I believed was a good sign that the Equillibrant was working.  So today's unexpected dip right back into crash mode makes me wonder if the green tea had anything to do with it.

[5/23/12 update:  Here's an article explaining why green tea is bad for Th2 dominant people.]

Saturday, May 12, 2012

Ridiculously optimistic, bright-side post # 4

I'm introducing a new theme to the blog today.  For better or worse, I tend to be a relentlessly optimistic person; the type who seeks to find the "bright side" of even the most frustrating situations.  I occasionally have these positive thoughts with respect to ME/CFS.  (Yes, there is a bright side there sometimes.  You have to look very hard, but it's there.)  So, I decided to start blogging these points periodically, under the tag "Ridiculously optimistic, bright-side post #__", or ROBP for short.

I figure, there are already plenty of blogs that seek better awareness of ME/CFS by highlighting the seriousness of our illness.  Those bloggers fight an important fight, for which I respect them immensely.  But I feel that, in staying true to myself, and true to the very title of my blog "Quixotic," I need to focus on the bright side of things.  As the negatives aspects pile up, I think it's important to remember that there are some positives to help balance things out slightly.  In that spirit, I am retroactively designating three old posts as ROBP numbers 12, and 3.

And here, my friends, is number 4:

I'm not sure how to put this... Um... Hopefully we can all be adults about this so I'll just come right out and say it.  I'm 1000% less flatulent than I used to be.  Undoubtedly, this is due to my change to a low carb diet.  But, I mean, wow!  I hardly ever have the urge to pass gas any longer.  I didn't even know that was possible!  My wife thanks you for that, ME/CFS.  I thank you for that.  That's got to be a sign of better GI health, doesn't it?

Way-too-early update on Equilibrant

I've been on Equilibrant for two weeks, and although it's probably much too early to draw any conclusions, that's never stopped me in the past!  I'm up to two pills a day, which is only a third of the maximum daily dose, but I believe it might already be having an effect.

Dr. C warned me that I would feel flu-like symptoms when I started taking Equilibrant, and that I would feel those same symptoms every time I increased the dose.  Sure enough, within a few hours of my first dose, I felt strong flu-like symptoms.  These symptoms lasted for about 3 or 4 days.  (Skeptics will say that I was simply experiencing a placebo affect, but I know I wasn't.)

The remarkable thing was that, at the time I started the Equilibrant, I was experiencing the unmistakable beginnings of a cold--a sore throat and sniffles.  I became more than a little distressed at this because I'd already had two colds since the beginning of the year and, due to my weakened immune systems, they proved to be very resilient foes.  Well, this time, a full-blown cold never materialized.  I believe--but, of course, can never prove--that the Equilibrant kicked the Th1 side of my immune system into gear and defeated the cold.

After the initial flu-like symptoms disappeared, I enjoyed about a week of excellent, high energy days. I almost felt normal again.  In this middle of this high-energy period, I increased my dose to two tablets per day.  This time, I did not experience the flu-like symptoms like I had previously.  But, on the fifth day after increasing the dose (which was yesterday), I had a moderate crash.  I remain crashed today, as I write this.

Dr. C never said I wouldn't have any more crashes.  Rather, he said if the Equilibrant is working, my crashes should gradually become less severe, and less frequent.  So far, I cannot tell if this crash is any less severe than normal--perhaps a little.  But then again, I'm only at 2 pills per day.  My typical crash lasts 3 to 6 days, so if I'm feeling better by tomorrow evening, I will take that as a good sign.

In the meantime, be well and I'll see you in the next post.

Friday, May 11, 2012

Further information on Th1/Th2 imbalance...

I recently came across this article describing Dr. Cheney's theory of Th1/Th2 imbalance.  It is remarkably similar to my doctor's explanation (Dr. C), but adds a few interesting twists.

What's great about this article is is that it suggests six other supplements/prescriptions that can help shift the immune system back to the Th1 side.  (None of them are Equilibrant).  So it's good to know that I have other options if the Equillibrant fails; or, options to add to the Equilibrant if the Equilibrant works but doesn't take me completely into remission.

Thursday, May 10, 2012

Blood tests show gradual improvement

On Tuesday, I had yet another doctor's appointment.  This appointment was with my "old" ME/CFS specialist, Dr. W, who I still intend to see every once in a while.  (He provides certain treatments like Immuno Stim and T3 that my new doctor, Dr. C, does not.  And as I've read many times and firmly believe, the key to remission is "getting all the pieces of the puzzle into place at once.")  Based on my latest lab results, I may be headed in the right direction.


I realize, of course, that Candida is more a symptom of a weakened immune system than a cause of ME/CFS itself.  But, since December, I've had the pleasure of watching my Candida antibody levels gradually drop.  Not as fast as I'd like, but the trend is encouraging.  Here's the progression of all 3 antibody types, from December to April (where "positive" is anything over 1.0):

              Dec.     Feb.    Apr.  
IgG         1.3       1.2      1.2
IgA         3.7       3.3      2.6  
IgM        1.4       1.3       1.2

The drop from December to February was, I believe, mostly from a change to a low carbohydrate  diet.  The drop from February to April was aided by two months of Nystatin, which I will be continuing for at least another two months.  The real test will come when I quit the Nystatin.  But I think that as long as I stick with the low carb diet and probiotics, these numbers should continue to fall.

Epstein Bar Virus

Unfortunately, I've only ever had Epstein Bar Virus (EBV) tested twice, and using two different assays, so the results are not directly comparable.  But the recent results are encouraging.  In July, 2011, my IgG antibody levels were 2.71 (where >1.10 is positive) on a VCA test, and >5.00 (where  >1.10 is positive) on an EBNA test.

In April, I had EBV tested again, using an IFA test.  The IgG antibody level was 1:160 (where  >1:10 is positive).  That number is way below what most people consider to be the threshold for a reactivated infection.  I've read anywhere from 1:640 to 1:1280 as the threshold.  

So based on this evidence, I'm less convinced that EBV is a significant factor in my ME/CFS.  


High bilirubin isn't typically considered a component of ME/CFS, but it is the hallmark of a genetic condition called Gilbert's syndrome, which many sufferers claim has the same symptoms as ME/CFS.  I have Gilbert's syndrome.  

Bilirubin levels above 1.2 mg/dL are considered high. Throughout my entire life, whenever my blood was tested, my bilirubin levels were in the 1.5 to 1.6 range.  In a March blood test, it was only 1.2, and in April, only 1.1.  I'm normal!  I believe this is due to the milk thistle supplement I now take 3 times a day for liver health.   

Vitamin D3

My vitamin D3 levels also improved from 40 ng/mL in December (very low), to an ideal 73 in February.  This coincided with the major reduction in shortness of breath.  It is also supposed to improve immune function.

Other Pathogens

With other pathogens, I haven't been as lucky.  HHV-6 was tested for the first time in December and was 1:320 (IgG), which is considered right at the threshold of a reactivated infection.  In April, it was exactly the same (1:320), and this was after two months of the antiviral Famciclovir, 500mg 2x/day.  I will continue to take the Famciclovir for another two months at least, if not much longer.

In April, I was tested for Coxsackie B for the first time, and tested positive for Coxsackie B4.  I haven't even begun to explore treatment options for this with Dr. C yet.  

My Mycoplasma Pnuemoniae numbers also remain very high, although that's not surprising because I haven't done anything to treat it yet.   In April, the IgG levels were 1:512 (where greater than 1:64 is positive).  Dr. W wants to treat it with two fulls months of the broad spectrum antibiotic: Cipro.  This is heavy-duty antibiotic and many people report strong side effects, so I am leery of this suggestion.  I've filled the Rx, but haven't begun taking the pills yet.  I plan to do a little more research before diving into two months of Cipro. 

Finally, Dr. C tested the four subclasses of IgG antibodies generally (i.e. not looking at antibodies for specific pathogens).  Three of the four subclasses were normal, but subclass 3 was a paltry 12, where normal is 22-178 mg/dL.  Dr. C says this "may be my Achilles heal."  We'll see if the Equillibrant can change that.

So I've had some good new and some bad news lately, but the overall trend is positive.  I'll report on the Equillibrant later this week....

Take care,


Sunday, May 6, 2012

Changing our vacation strategy

I'm writing to you this morning from the second day of a weekend vacation to Palm Springs with my wife and baby girl.  Palm Springs is a short two hour drive from our home.  This is the first true vacation we've taken since I first became sick in June of last year, and also our first trip since becoming parents in August.  In a way, the coincidence of those two events (illness and parenthood) worked out well because we would have had to completely change our vacation strategy for either circumstance...

Previously, when on vacation, we tended to favor moderately priced accommodations, which we would use simply as a "home base."  From there, we would pack the days with as many excursions to local attractions as possible, only returning to our hotel late at night, completely exhausted.  They were the kind of vacations where one returns home and spent of energy and thinks, "OK, now I need a vacation from my vacation!"  Obviously, that is no longer possible with ME and/or a baby.

This time, we searched long and hard for accommodations that could also serve as a destination in and of itself.  We finally settled on the resort I'm writing from right now: le Parker Meridien.  Once owned by film star, Gene Autry, the hotel is decorated mid-century modern with just the right amount of kitsch.  But grounds here are the real attraction.  The resort is on 13 acres of (one almost wants to say "English-style" except for the palm trees) gardens, with endless pathways that meander from garden to garden.  Interspersed with the gardens are various swimming pools, croquet lawns, bocci courts, hammocks, fountains and sitting areas.

What have we done this weekend?  So far, almost nothing, unless you count lounging by the pool.  And it's everything I always knew a vacation could be.  The best part is, our baby seems to be soaking in all this new stimulation with complete wonder.

With that, I'll leave you with a few pictures of the grounds here.

The view from the pool deck

Yours truly, in my typically garish vacation attire.  

Here I am setting up the chess board.  We actually did manage to play a game to completion, while baby C crawled among the pieces like an extra pawn.

Here's Mrs. Calvin tossing a bocci ball.  Excellent form!

Wednesday, May 2, 2012

Low NKC Function: Should I get regular cancer screenings?

I just returned from an appointment with an oncologist (Dr. L.) and wanted to share what he advised.  First, a little background is needed:

This was a follow-up appointment, scheduled 7 months ago, before I'd been diagnosed with ME/CFS.  At the time, my GP had referred me to an oncologist because I'd experienced rapid weight loss, extreme fatigue, and my blood tests showed a high white blood cell count: all signs of a possible malignancy.

But the oncologist had quickly ruled out cancer--or as close to "ruled out" as possible--based on further blood tests.  Today's appointment was scheduled as a precaution, to monitor a minor irregularity found on my CT scan.

Having since received an ME/CFS diagnosis, I almost felt that it was no longer necessary to attend today's follow-up appointment.  In fact, I very nearly cancelled.  Ultimately, I decided to go anyway, if only to ask one question that has been bothering me for months.

The question stems from my March 5th test results showing low Natural Killer Cell (NKC) function.  (8 on a scale of 8-170).  After reading a book about the immune system, I learned that NKC's have two functions: They attack viruses, and they destroy tumors before they start.  They are the immune system's primary defense against many types of cancers!  So this information, combined with the general buzz on message boards that PWME's are more susceptible to cancer, had me a little concerned.

So my question was: based on my NKC test results, should I get regular cancer screenings?

The short answer was: it depends on what you mean by "screenings."  I'll explain...

First, I should mention that Dr. L had never heard of the NKC function assay, or of low NKC function being a risk factor for cancer.  It gave me some comfort that a doctor who has devoted his life to cancer study wasn't freaking out over my test results.

But what about screenings?  According to Dr. L, existing technology is very primitive in terms of detecting cancer in its earliest stages.  There is no general "cancer test."  While there are blood tests for so-called "tumor markers," these are only useful for monitoring the treatment of a known tumor.  Tumor makers, as a screening technique, are so error prone that they've been deemed useless.  They have an unacceptably high rate of both false positives and false negatives, and therefore, doctors won't order them for diagnostic purposes.

Regular imaging, such as CT scan or X-rays are no better an option.  The problem is that the radiation builds up in your system over a lifetime.  There is currently a debate in the medical community about how often is too often for CT scans, but you'd be hard pressed to find a doctor who would recommend yearly scans as a preventative measure.  (If you're monitoring a known tumor, that's a different story.)  Due to the extra radiation, the scans might be more likely to cause cancer than to diagnose it.

According to Dr. L, the next best thing is to simply receive regular annual or bi-annual physicals, including standard blood work-ups. The blood work-up should include inflammatory markers (like sedimentation rate) which can sometimes indicate a malignancy.  All of this is, of course, in addition to following the recommended yearly PSA screenings for men, and breast cancer/pap smear screenings for women.

So, while I'm not sure that Dr. L's recommendation would be different for any normal, healthy person, I take away two things from this:  (1) piece of mind knowing that there isn't some life-saving test that I'm missing, and (2) confirmation that regular blood tests--which I'm already receiving due to my CFS treatments--are the best way to monitor my health, including possible cancers.

For those PWMEs, like me, who like to find the bright side of things, just think: the extra diagnostics we undergo for our ME/CFS may end up catching something that would have otherwise gone un-diagnosed  until it was too late!