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

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

Monday, December 31, 2012

NYE in the ER

It looks like I'm going to be spending New Year's Eve in the ER. I'm there now and it's only an hour before midnight with no sign of release any time soon.

I've been having severe shortness of breath all week. Then tonight it got REALLY bad, as in, it felt like I was suffocating. I have no idea why because my fatigue has not been too bad this week.

Along with the SOB, my hands and feet got cold and tingly, and my face went numb (and still is). So here I am in a hospital bed pecking away at my phone while my wife is at home with the baby. You'd think I'd be upset about this, but I'm trying to be a good sport about it and not worry too much. The good news is that 2013 can only get better from here.

Have a happy new year everyone.

Friday, December 28, 2012

The 5 Stages of Dealing with ME/CFS

I was having lunch with a fellow patient yesterday and we started talking about how many patients  pass through the same stages of dealing with ME/CFS.  This is evident when you talk to other patients online or in person.  We realized that very little changes over time in the ME/CFS community.  Patients who get ill today will basically follow the same path, trying the same treatments (often in the same order) as patients who first became ill 5 or 10 years ago.  Here's my attempt to define the stages of dealing with ME/CFS.

A caveat: there will be plenty of exceptions, as we all have different etiologies, levels of functionality, economic means, and social support.  But in my experience through interacting with hundreds of other patients online, this is generally how it goes.  Admittedly, this might be shaded toward my personal experience, although I've tried to eliminate personal bias.

Also, my sample must be biased toward online patients.  There is an entire subgroup of patients who never do any research and simply trust their doctors implicitly for diagnosis and treatment.  They are not represented here.

Keep in mind, patients are likely to drop out of this progression at any stage if they improve to about 90% or better.

Stage 1 - Pre-Diagnosis

This stage can last anywhere from 4 months to 10 years or more.  Beginning around the turn of the millennium  with the advent of the internet and the increasing acceptance of the ME/CFS diagnosis, it became more common for patients to receive an early diagnosis, i.e. within a year or two of onset.

This is often a time of fear and anxiety, as the lack of a diagnosis causes us to wonder endlessly about the possible causes of our illness.  Usually we visit somewhere between 10 to 30 doctors before receiving an ME/CFS diagnosis (rarely less than 10).  Often the ME/CFS diagnosis is guided by our own "process of elimination," having ruled out nearly every other possible cause of our symptoms before finally seeking out a doctor knowledgeable about ME/CFS.

Stage 2 - Heavy Research & Networking

After diagnosis, many patients begin a period of heavy research, if their cognitive abilities still allow.  Sometimes "brain fog" prevents this.  For those who can manage it, we often dive into ME/CFS literature with the goal of learning everything we can about this illness.  We start with internet sources, including message boards, and sometimes even branch into medical journals and books.  We often begin networking with other patients during this stage, through internet and in-person support groups.

Almost inevitably, the heavy research begins to slow down.  The term "burn out" is often used by patients reflecting on Stage 2.  For others, they don't so much burn out as reach the end of the line.  At some point, one begins stumbling across the same literature again and again and becomes satisfied that they're more-or-less familiar with the general ME/CFS landscape.  This is not to say we feel we've read "everything"that would be impossiblebut we have a working knowledge of most of the major theories of etiology and treatment.

Also during this stage, we usually begin exploring treatments, but maybe with only one or two supplements in combination with lifestyle changes (less work, diet changes).  Maybe a single prescription drug is tried.  Some of us overestimate our chances of a full and quick recovery.  If a patient has any inclination toward activism, it usually appears (and peaks) in this stage.

Stage 3 - Exploring a Multitude of Treatments

There's significant overlap between Stages 2 and 3Stage 3 usually begins somewhere in the middle of Stage 2.  But eventually many patients find themselves on dozens of treatments (supplements and prescriptions), either at the same time, or in a series of experiments.  Some of us look for the right combination of treatments, while others look for the best single treatment.  This stage is guided by a mixture of doctor advice and ME/CFS community advice.  The research usually doesn't end during this stage (or any other stage) but it slows significantly.  We will still fully explore any new research breakthroughs or "hot button issues" making the rounds on message boards, but we don't actively seek out new information as aggressively as in Stage 2.

There's a wide time frame for this Stageperhaps 6 months to 10 years or more.

Stage 4 - Settling Down

At some point, we become satisfied that we have explored most treatments that are reasonably available to us (given economic and geographical limitations), and we've ruled out many treatments that didn't help or made us worse.  We settle on one to three treatments that are most effective plus key lifestyle changes.

At this stage, some patients are more jaded and less hopeful for a full recovery.  The goal here is just  to regain some quality of life.  Hope for a full recovery at this stage often rests in the prospect of some future game-changing medical breakthrough.  We study news of ongoing and burgeoning research more closely than past research results.

(Stage 5 - Relapse)

If a patient suffers a major relapse or a sudden deterioration, sometimes they repeat Stages 2 through 4 in an abbreviated way.


If you are new to ME/CFS and you're reading this, you might be wondering, "can't I  skip ahead to Stage 4?"  The answer is, no.  My advice to you would be to go through the these stages like the rest of us did.  If you don't, you'll always be wondering if you might have found something that worked for you.  Good luck and may you never reach the next stage.

[Update 12/31/12:  I submitted a draft of this post for feedback in the Members section of Phoenix Rising.  Many users there offered interesting comments, additions and criticisms.  The discussion is worth reading if you are a PR member.]

Thursday, December 27, 2012

Starting Epivir today

Back in September, after my last appointment with Dr. C, I wrote about his plan to try two new antivirals to see if they improved my condition in combination with Equilibrant.  The first was Amantadine and, if that didn't work, the second was Epivir.  (That post is linked here.)

I tried the Amantadine for about a month in September and I developed some neuro symtoms during that month which I suspected might have been caused by the Amantadine.  So I stopped.  The neuro symptoms have mostly disappeared since.  Dr. C also said I could stop taking the Amantadine if I didn't see any improvement after a month, which I didn't.

Around the time I stopped taking Amandatine, just as I was about to transition to the next drug, Epivir, I suddenly entered a two and a half month period where my symptoms improved.  Things were going so well that I didn't want to do anything that might possibly interfere with my progress.  So I postponed starting the Epivir experiment.

Unfortunately, that 2.5 month period of improvement ended last Sunday and hasn't shown any signs of returning.  I wouldn't say that I've regressed back to where I was prior to October, but I've lost much of my progress.

So now I'm going to try Epivir.  Unfortunately, I recently received a notice from my insurance company saying that Epivir is a "specialty" drug (whatever that means) and I have to obtain it from one of their approved specialty pharmacies.  So now there's one more hoop the insurance company makes me jump through.  When will they stop?

I'll update in a month or so and let you know whether the Epivir works.  Thanks for reading.

Monday, December 24, 2012

What a week! (Cold weather and CFS - a personal update)

It's been one of those weeks where I look back and think, "Patrick, you're pushing it too hard.  You need to learn to cut back on the activities."

Last Saturday, my wife wanted to take our daughter to the local zoo.  At first I declined; my body was warning me that it needed rest.  I said they should go without me.  But then the thought of missing my daughter's first trip to the zoo sort of became unbearable and I changed my mind.  I figured, "I'll just sit down as often as I need.  We'll make it a leisurely stroll through the zoo.  No big deal."

My daughter barely blinked as she stared at the exotic animals, particularly the hog-sized bald eagle.  She's fascinated with birds.  Her mother and I, it seemed, were more content watching her watch the animals.

It wasn't the walking that got me so much as the weather.  It was freezing by Southern California standards--48 degrees--and I made one of the cardinal mistakes a CFSer can make...I went out underdressed.  And to make matters worse, the zoo had a policy (probably for liability insurance reasons) against selling hot beverages of any kind.  Damned lawyers!

I made it through the day without crashing, although I shivered through much of it.  By the next morning, still feeling somewhat robust, I thought maybe I had gotten away with "the great zoo caper"....until around noon.  I went from light housework to couch-locked in the span of a half hour.  The crash hit hard.  

And boy did this crash have legs.  It just went on and on all week.  Before this crash, I thought maybe I'd passed the stage where weeklong crashes were possible.  It turns out I just needed to push myself a little harder.

My work schedule didn't make the situation any easier.  (Here I'll insert the my usual acknowledgement  that I'm indeed lucky to still be able to work. Many of us aren't.)  In one of my cases, I'm up against a team of lawyers from South Florida whose ethics have always seemed questionable.  Last month they filed three large motions on a date that would ensure all three of my oppositions would be due on Christmas Eve.  I guarantee that was not a coincidence.

Planning ahead, I made it my goal to finish and file all three oppositions by Friday the 21st so I could enjoy the four day holiday weekend.  Not to prolong the suspense: I did it, but last week was fairly miserable.  While I'm lucky that brain fog is not one of my usual symptoms, working so hard while physically crashed was brutal.  I was a cranky, angry bastard by Friday afternoon and I may owe one or two of my coworkers apologies.

We (the family and I) have now returned to my "ancestral homeland" about an hour up the coast from our house: my parents' house.  We're here for four days, and it's a little like regressing to childhood.  I take long naps on the couch and pretty much just watch football and enjoy my family's company all day.

My mom, who knows about my diet from reading this blog, secretly purchased the same "Low Carb Gourmet" cookbook that my wife uses and is making a few paleo-friendly dishes for our big Christmas dinner.  My brother is giving me a good-natured ribbing for being "difficult."  But, hey, I didn't ask for that.  But I'll certainly take it!  Just wait until I get my hands on the pumpkin chiffon stevia pie.

My brother and his family are here from San Francisco.  This is the first time that my daughter (16 months) and his daughter (23 months) have spent any significant time together.  They toddle around from room to room, following each other and exploring all the knick-knacks of grandma and grandpa's house; a couple of curious little two-foot princesses.  I think (hope) we're watching the beginning of a life-long bond.

With that, I want to wish everyone Happy Holidays.  Stay stress-free and warm and enjoy whatever it is that makes you happy this time of year.

Friday, December 14, 2012

My one year blog-iversary

It was one year ago today that I launched this little blog.  A year and 147 posts later (and a few unfinished drafts) and I'm lucky to be still at it.  Of course, at the time I started, I was hoping that I would never make it this far because I'd be cured and move on with my life.  But barring that, I'm very fortunate and happy that I've had a chance to connect with so many other great people through this blog and other ME/CFS websites.

Looking back at my first post, I wrote about all the reasons I chose to start this blog.  Most of them were personal--everything from keeping my immediate family informed to making a record of my research.  Have you ever been researching an ME/CFS issue and suddenly gotten a feeling of deja vu?  Then you read a little further and you realize, "yes, yes I've definitely been to this webpage before.  I'm going in circles; I'm relearning things I've already learned"?  Well, that was another reason I started this blog; to keep track of what I'd already learned.  It was sort of my ME/CFS "Pinterest" account, before I had ever heard of Pinterest.

My point is, all my reasons were, at first, personal.

A year later and there's this whole new dimension to blogging that I didn't expect: connecting with great people.  There are so many smart, interesting, capable people with ME/CFS, and I'm always amazed at how willing they are, generally, to take the time to express concern and compassion and to share ideas with someone they've never met in real life.  So I want to thank all of you who I've met, not just through my blog, but throughout the ME/CFS internet.  It's been real.

Thursday, December 13, 2012

If not ME/CFS, it might be something else...

Reading this article linked on Yahoo! made me feel just a tiny bit better about living with a chronic illness because, from the looks it, it seems that health issue are somewhat part and parcel of living longer lives in modern times. Maybe things aren't supposed to be as bad as ME/CFS, but they aren't supposed to be perfect either. I'm also hopeful that my diet changes will minimize some of the other health problems described in this article - as if I'm investing now in better health later. Maybe the net result will even be positive - who knows?

Sunday, December 9, 2012

Review of Julian Bakery's paleo breads and cookies

It seems that Julian Bakery is all the rage on the CFS message boards and facebook groups these days.  I see them mentioned frequently.   Because I've been ordering products from them for a few months I thought I'd offer my review of some of their products.

About Julian Bakery

Based on their website, Julian Bakery was a small bakery with apparently just one brick and mortar location in La Jolla, California.  But because of their unique take on healthy baking, they seem to have exploded in popularity nationally via internet orders and contracts with retailers like Whole Foods and regional health food stores.  Apparently there's a huge unmet need for paleo, low carb, and gluten free bread products and Julian Bakery is one of the very few in the market.  

The first time I placed an order with Julian, it took two weeks to receive my shipment.  The second time: three weeks.  Toward the end of the third week I emailed the bakery to find out if my order got lost.  They nicely responded that they were running a little behind in fulfilling their orders due to large demand.  So the next time I ordered, I placed the order about 3 weeks before my last order ran out, expecting another delay.  The order showed up on my doorstep 2 days later!  If you're a glass-is-half-full, you could look at this as another exciting element of the process - like a game of roulette.  When will my goodies get here?  Who knows!

By the way, Julian sells many more types of breads besides just low carb and paleo breads.  Their focus is really on healthy breads of all kinds.  And while my local Whole Foods carries Julian's products, they only seem to carry the gluten free, full carb products.

For those of you who like to support Christian-run organizations, Julian includes a few subtle clues on their packaging and website indicating that their owners are Christians.  

Bread Products

So far, I've tried the following bread products from Julian: Paleo bread made from almond meal (1 carb); paleo bread made from coconut (1 carb); Zero carb, gluten free cinnamon bread; Zero carb, gluten free regular bread, and Smart Carb bread (3 carbs).  

These first two types of bread, made from almond and coconut respectively, really aren't "bread" at all, in the traditional sense, because they don't contain grains.  They are, however, my favorites because they seem to have more flavor.  The breads that are made from actual grains achieve their low carb-ness by relying heavily on fiber content so that the net carbs are reduced to nothing, or next to nothing.  

If you're going to enjoy these products, you may have to adjust your expectations slightly.  Julian's breads are not large, fluffy slices of traditional grocery store bread.  They're smaller, drier, and much denser, resembling small loaves of artisan breads.  While Julian's loafs vary in size, a typical slice is about 1/2 go 2/3's the surface area of traditional bread, and about half as thick.  On the other hand, each slice probably weighs more than "regular" bread because it's so dense.  

The density and the dryness took some getting used to when I first started sampling Julian breads.  I often found that I needed a glass of water to help wash down each bite due to the dryness.  But then again, traditional bread is full of unhealthy grains, sugars and carbs anyway, so it's probably best if you start thinking of those big fluffy slices as the junk food that they are.

I figured out quickly that it really helps to follow Julian's advice from their website and toast the bread -- heavily.  For some reason, this seems to give it a texture and taste that's more similar to regular bread.  

Once I adjusted my expectations, I found myself almost giddy about welcoming bread back into my life.  It revived a whole palette of convenience foods options.  Ah, the ubiquitous sandwich: I missed you.  Toast and jam: where have you been?  (That's no carb jam from Sprouts, by the way.)  My wife also discovered that using these breads to make French toast is a nice way to moisten them up.

If I had to recommend trying any of their breads first, I would suggest the coconut Paleo Bread.  It has an interesting flavor and texture that goes well with everything from jam to almond butter to french toast batter.

No Carb Cookies

Zero carb cookies.  Yes, these exist. Get them.  End of review.

OK, I was going to leave my review at that, but I guess I should say a little more.  Julian offers three flavors of zero carb cookies: Cocoa Delight, Ginger Spice, and Strawberry Banana.  I've tried all three and love them, ranked in the order listed above.  They're a little bit firmer than the gooey store-bought cookies that are full of preservatives, crisco and who-knows-what-else, but the flavor is almost as good. 

Again, the zero carb-ness is achieved by high fiber content and the use of erythritol as a sweetener instead of sugar.  

The biggest drawback here is the price, at $8.99 per box of ten (almost a dollar per cookie).  Again, I think the secret is to adjust expectations.  Whereas in my pre-sick days, I would often sit down with a box of cookies and pop 6 or 10 at a time like they were M&Ms, now I treat these cookies more like rare delicacies: one per night after dinner.  That's it.  And that's enough to make a satisfying desert.

A Different Perspective 

At least one blogger, "the Diet Doctor," claims that Julian Bakery's net carb counts are deceptive, arguing that their breads raise blood sugar more than Julian's stated carb counts would indicate.  A representative of Julian Bakery then drops by in the comments section and things get a little ugly.  

My take on it: who knows who's right?  But does anyone really doubt that Julian's breads are healthier than typical grocery store bread?  I suppose it depends on how strict your particular low carb/paleo diet is.  If you're truly aiming for no carbs, ever, then maybe the above blog post gives you some pause.  But if you're just trying to keep carbs to minimum (my goal is less than 70 per day, pursuant to Life Without Bread by Christian Allen, et al) then Julian's breads can certainly be a good way to meet your goals and still enjoy some of the flavor and convenience of bread. 

Where Do We Go From Here?

I'd be curious to hear from others who may have tried Julian Bakery's products.  What ways have you found to use these unique breads?  I'd also be interested to know if there are any other companies that make similar bread or dessert products, as I am not aware of any.

Wednesday, December 5, 2012

Interesting article busts myths against low carb diets

I don't have much time to blog today, but I did want to pass along an interesting article that busts nearly all of the myths one hears against low carb diets.  I've heard some of these myths.  While I've always had the sense that they were incorrect, I couldn't exactly explain why.  This article does a great job of it.

Monday, December 3, 2012

Natural Th1 immune boosters

I recently ran out of a supplement called ImmunoStim that I've written about many times.  I believe it works in conjunction with Equilibrant as a natural immune modulator, shifting the immune system toward Th1.  Unfortunately, the supplier of this product keeps revising the forumla.  They recently tried doubling the number of ingredients, adding at least one harmful herb, and almost doubling the price.

When I complained, (and I assume others did too) they backtracked and said they would go back to the original formula.  I pointed out in an email that the new formulation contained greed tea extract, which stimulates Th2 -- the exact opposite of what we want.  To their credit, they emailed back and said they were aware of the issue and were fixing it.  They said they are going to return to the original formula, but now, because of all the chaos these changes have created, they're saying they can't fulfill any more orders until January or February.  This is frustrating.

The last time I couldn't get ImmunoStim for a while (about 1 month) my health definitely deteriorated.  It will be interesting to see if it happens again.

In the meantime, I'm trying to track down many of the ingredients contained in ImmunStim so that I can take them separately if I start to go downhill again.  My research on that front brought me to this nice summary of natural Th1 boosters and suppressors, which I wanted to pass along:

There are many natural agents available to help restore balance in an underactive Th1 arm. These include:

Omega-3 fatty acids, monounsaturated fats found in olive and hazelnut oils, vitamin A cod liver oil, l-Glutamine, Silica, digestive enzymes, friendly intestinal flora or soil based organisms (SBOs), ginseng (Red Korean or concentrated Siberian Ginseng extract), chlorella (spirulina and some other sea vegetables may have similar benefits),thyroid hormones, garlic (raw or aged extract), l-Glutathione (or products that raise levels), DHEA or AED (androstendiol), UV-A light, vitamin E, transfer factor (antigenspecific) - protein immunomodulators extracted from colostrum, colostrum, low dose naltrexone, IP6, lentinian and certain other mushrooms, Thymus extracts, licorice root, dong quai, beta 1,3-glucan, noni, neem, gingko biloba, exercise, water (to aid detoxification), a positive attitude and prayer, the ability to forgive and be compassionate, and having long-term goals.

Factors that induce Th2 cytokines and suppress cell-mediated immunity

Processed, heated vegetable oils high in trans-fatty acids and linoleic acid (safflower, soy, canola, corn and sunflower), glucose (white sugar), asbestos, lead, mercury and other heavy metals, pesticides, air and water pollutants, progesterone, prednisone, morphine, tobacco, cortisol (in high doses), HIV, candida albicans, HCV, E coli and many other pathogens, continuous stress, thalidomide, UV-B light, pregnancy, melatonin(conflicting research suggests that high levels induce Th2 cytokines while very small amounts induce Th1 cytokines), alcohol (animals studies show that ethanol definitely suppresses Th1 cytokines and induces Th2; beer was not tested and there are some indications it may help), streptococcus thermophilis (sometimes found in yoghurt),candidiasis, circulating immune complexes (CICs - caused by a combination of leaky gut syndrome and poor digestion of proteins due to a lack or HCl and digestive enzymes), sedentary lifestyle, negative attitudes, low body temperature, acid saliva pH, chronic insomnia, inability to dream, weight lifting, and steroids (for muscle gain).


Saturday, December 1, 2012

November was my best month

I just calculated my average daily health rating for the month of November and, surprisingly, it was my best month yet.  Before calculating, I guessed that November was not as good as October, especially given that I recorded one of my lowest one-day ratings of all time on the day I got the stomach flu. But I bounced back from the stomach flu quickly and November beat October by over 1.3 percentage points on my personal scale.  To me, this is more proof that the combination of treatments I've been on since late September is working.  Here's a link to my most recent post listing average monthly health ratings, which has now been updated (click here.)

Again, I realized that in the big scheme of things, two months of improvement may not mean much.  Maybe it's just temporary, but it sure is nice to know it's possible.