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.

Friday, November 30, 2012

Attended a "meetup" with other patients

I went to my first "meetup" with other patients this Wednesday and it turned out to be better than I expected.  It was a local support group that I found online back in March. I had been planning on attending one of their monthly meetings ever since, but something always seemed to come up -- often a crash -- that made it difficult to attend.  A couple of times, I learned in advance that the group had scheduled a guest speaker and I simply wasn't interested in listening to an hour-long commercial by some local "health consultant."  Finally, the stars aligned for this week's meeting.

I have to admit, I had some apprehensions about attending a support group.  Say the words "support group" and I imagine of a bunch of whiny people exchanging trite, new-age platitudes. But it wasn't like that at all.

The meeting was held in a coffee shop and the group took over its own seating section.  There was a brief round of formal introductions, but mostly it was free-form a cocktail party, only seated...and no booze.  I found out there are some interesting and wise people in the group whose experiences make mine look like a walk in the park.  My only regret was that I had to leave after an hour and a half.  I could have easily stayed for much longer.

It's refreshing to speak with other people who know exactly what you're talking about; who speak the same language and know about the same doctors and treatments.  Meeting people online has been great, but in-person meetings add a whole new dimension where one can actually look another in the eye and communicate with tone and expression.  The experience also made me feel less like a statistical anomaly knowing that there were as many other CFS/FM patients living nearby.

Now it's really game on.  The ice is broken and I'm looking forward to going to more meetings and networking with actual real life CFS patients.

Thursday, November 29, 2012

Another Doctor Recommends More Thyroid & Testosterone

I met with a sleep specialist yesterday.  It was an appointment I had made over six months ago when sleep disturbances were a more significant concern.  Since that time, I've improved my sleep through the correct use of small amounts of melatonin, and by changing my nighttime habits (reduced use of electronics within two hours of bedtime, etc.)  The sauna has also helped.  Nevertheless, I decided to keep the appointment with the sleep specialist in case he could contribute any other useful advice.

As it turns out, he did -- but it didn't have anything to do with sleep.

As the sleep specialist (Dr. B) was reviewing my labs and health history, he suddenly looked up from the papers and rather emphatically told me that I should be taking more T3 thyroid hormone.  I've mentioned here before that Dr. W (one of my CFS doctors) also wants me to increase my T3 intake.  I've been resistant however, because I'm afraid of developing a dependence and not being able to reverse course if/when my ME/CFS goes into remission.  I expressed this concern to Dr. B.

Dr. B said, very frankly, that I need to accept that when someone develops hypothyroidism, they don't come back from it.  This applies particularly to people who become hypothyroid from CFS. He said that while I may achieve some sense of "remission" from the flu-like symptoms, I will always have hypothyroid symptoms unless I supplement; that I will probably need to supplement for life unless I accept feeling constantly sluggish.  He tried to impress upon me the normalcy of lifelong T3 supplementation, saying that far more people do than I would ever suspect. Dr. B told me to tell Dr. W to increase my T3 intake to "1 grain" (I'm guessing that means 100 mcg, as opposed to the 50 I'm currently taking.)

I found this interesting because it is also what Dr. W has been telling me for 6 months.  I was reluctant to take Dr. W's advice for the reasons I stated above.  I felt that once the cold hands/feet and body temperature issues were corrected, which happened at the 50 mcg dosage, there was no need to go higher.

This advice was suddenly much easier to accept coming from Dr. B for two reasons.  First, it's simply more compelling when you hear the same advice from multiple doctors.  It helped appease the skeptic in me that quietly wondered if Dr. W could be somewhat of a drug pusher.  The second reason is that Dr. B has no financial incentive to recommend T3.  He knew that any additional T3 I took would be supplied by Dr. W's office.  This this again helped sooth my skepticism.

Another thing that struck me is that both Dr. B and Dr. W have both told me the same thing, almost verbatim:  That most ME/CFS patients who introduce T3 by gradually increasing the dosage find that they surpass a threshold where they suddenly feel much better.  It's as if, to use a car analogy, the body's engine finally turns over and revs into gear at a certain dosage.  Dr. B said the  threshold is different for everyone, but it's certain to be past 50 mcg, which he characterized as "not much at all."  

In light of the above, while I still remain hesitant to increase my T3 dosage, I'm now leaning toward doing it at my next appointment with Dr. W.

With regard to testosterone, the conversation went basically the same as above.  Just like Dr. W, Dr. B strongly encouraged me to continue supplementing until my blood levels rise above 800 ng/dl.  He said that a man my age should have twice the testosterone levels than my blood work indicates (300-400).  He encouraged me to keep supplementing until I reach optimum levels for my age.  He practically guaranteed that I would feel much better if I reached that goal.

It's getting harder and harder for me to turn away from this holistic approach, so I think I might start following Dr. W's recommendations more closely and at least give it a try.  If my blood levels of thyroid and testosterone reach the recommended levels and I still don't feel significantly improved, I can back off to current levels.  I've done the research and I understand the risks and benefits, so I think it may be time to see what happens.

Of course, all of this will be done parallel to my other treatments, so my hope is that the hormone supplements will allow me to take another equally strong step forward.  Wish me luck!

Sunday, November 25, 2012

Three Keys to My Recent Improvement

First, I want to clarify that I am not "all better."  I realized, reading my recent posts, that it wasn't entirely clear whether I was saying I'm "better" as in "all better" or better as in "improved."   It's definitely the latter. (The word "better" can cause all sorts of confusion, as I've learned from communications with my friends and family).   I have jumped up to a new plateau that is perhaps 5 or 10% better on average than I was before.  But I'm still quite limited in what I can do.  I fact, I realized after trying to work yoga back into my weekly routine that I'm not yet ready for serious exercise.  Even relatively light yoga set me back temporarily.

The good news is that, even if I regressed to my previous level of illness tomorrow, I'd still feel encouraged just knowing that this type of improvement is possible.  I'm aware that the CFS message boards are full of long-time CSFers who experienced extended periods of improvement, followed by remissions.  So I don't think I'm out of the woods by any means.  I'm just trying to enjoy my improvement for as long as it lasts and, with any luck, build on it.

Key 1 - Equilibrant

First, how do I know what caused my improvement?  The short answer is, I don't know for certain.  Nothing is 100%.  Maybe I would have improved had I done nothing.  But I think I can be fairly confident in my assessment based on the timing of various improvements compared to the initiation of treatments.  And when I skip a dose of these treatments and experience a setback, it confirms my initial suspicions.  There's also a small amount of intuition involved.

By taking Equilibrant, which I've discussed at length in past posts, I believe I laid the groundwork for further improvement later.  By itself, Equilibrant didn't lead to any tremendous improvement, but it stabilized the situation.  Prior to Equilibrant, my crashes were more severe and lasted longer.  But as I reported to Dr. C, I didn't feel that it was necessarily making the highs any higher.  Rather, it muted the lows and made them less frequent.

Key 2 - Infrared Sauna

Later, when I added the far infrared sauna to my routine, I took a significant step forward.  Building on the groundwork that the Equilibrant laid by modulating my immune system and stabilizing the situation, the infrared sauna actually raised my daily health average, so that my highs were higher (on top of the lows still being less severe).

Key 3 - Thymic Protein

The third factor is that I increase my dosage of thymic protein whenever I start to feel rundown or that a crash might be imminent.  I had been taking thymic protein occasionally for almost a year, but usually only one packet per day when I was feeling most ill.  More recently, I increased the dosage to the maximum of 3 per day (but again, only when I start to feel crash-y).  This seems to further shorten and blunt any crashes that might have designs on ruining my day/week.  The increased dosage was suggested by Dr. C (but only after inosine and several other Equilibrant co-factors failed).  

If I had to rate the importance of these three treatments, I would say: (1) Infrared sauna, (2) Equilibrant, and (3) Thymic protein, although, #1 and #2 are very close.  I'm not sure that either the sauna or the Equilibrant would have worked without the other, but that's only a hunch.

It seems that every PWME responds to different treatments depending on the etiology of his/her particular brand of ME/CFS.  So this trifecta certainly won't work for everyone, or even anyone but me.  And of course there's the usual caveat that I'm not a doctor and you shouldn't rely on any advice from me in forming your own treatment plan.  But maybe this will give others some ideas of possible treatments to discuss with their own doctors.

A rough graph of my improvement compared to the initiation of 'the key 3' treatments

Now, if you had told me a year ago that I would achieve this kind of moderate improvement, I would have been ecstatic.  But I think it's human nature to always want more.  I'm of course not satisfied, and I probably won't be unless/until I can do everything I used to do.  However, if ME/CFS has taught me anything it's patience.  If I have to bide my time and continue with my supplement/sauna routine for several more years before I (hopefully) take another step forward, I will gladly stick with it.  

Finally, I should mention that these three treatments aren't my only treatments.  I still take a number of other supplements, but I believe that these supplements are less important.  What I don't know is if they somehow made the improvement possible by, again, "laying the groundwork."  Over time, I'll have an opportunity to experiment with slowly cutting back on some of these other supplements and gauging the results.  And of course, I'll report what happens here.  

As always, thank you for reading, and I wish you the best of luck on your journey toward improved health.  As you know, except for a handful of dedicated and dare-I-say saintly doctors, we're mostly on our own with this complicated illness.  I wouldn't have found any of these three treatments without the knowledge I picked up from the message boards and blogs (that's how I learned of Dr. C too).  So I encourage others to share what works for them if/when they find something.  

Saturday, November 17, 2012

New, cautious workout plans

The vacation is going along swimmingly. Our daughter was brought down to join us for the second half of the vacation by grandma. Thanks Grandma! Not surprisingly, my health has remained steady given that I've had nothing to do for the last few days but sleep in and relax by the shore and/or pool.

I've had plenty of time over the last few days to think about where I am in my progress toward improved health and what the next step might be. My goal now is to very cautiously take the next step and start working out again. For the last six months i've practiced yoga periodically, but never on any kind of regular routine. Looking back at my health chart, I see that I'd often squeeze in a cluster of 2 or 3 yoga sessions across a few days when I was feeling well, then skip 7 to 10 days. Clearly, I'll never make any progress with this kind of erratic routine.

So my goal is to start practicing at least a little yoga every other day, starting with ten minute at-home sessions and cautiously increasing the amount if I continue to feel well. This schedule should fit in well with my existing sauna routine, which is also an every-other-day deal. I'll do yoga on the sauna off-days.

If the regular yoga routine sticks, after a while I'll see about starting back up with some light cardio workouts. But for now I'll take things slow so I don't undo the progress I've made.

Wish me luck, and as always, thanks for reading.

Wednesday, November 14, 2012

On Vacation in San Diego

First, an update on last week's illness:  It turned out not to be food poisoning as I first suspected (Sue was right!) but rather a stomach flu that made the rounds in our community.  I was fooled by the fact that the symptoms came on right after I ate a few handfuls of peanuts.  But then my wife got sick the next day and we later received an email from our daughter's daycare center warning of a nasty stomach flu that had hit nearly every enrolled family.

The good news is that I was back to almost "normal" by the next day, which really surprised me.  And I have continued with the relatively good health streak that I wrote about last Sunday.  At the risk of jinxing it, I really do seem to have turned a corner.  I've since developed a more detailed theory on what may have led to this improvement, which I'll blog about in the near future.

We're on vacation right now in San Diego, staying at a historic hotel on the island of Coronado. This is the first time we've been away from our daughter for more than 24 hours since she was born 14 months ago.  She's staying with grandma and grandpa right now and probably soaking up every minute of the extra attention.  Mrs. Calvin seems to be handling the separation far.

The hotel is a historical landmark, built in 1888.  If you've seen the 1959 classic comedy Some Like It Hot with Marilyn Monroe, the hotel provides the main setting for the high-jinx of Jack Lemon and Tony Curtis.  Here's a picture of the exterior:

This was originally supposed to be our Hawaiian vacation, but we ultimately decided to make this a local affair for a number of reasons (one of which was the hazards of air travel for a CSFer).  I have to say, while Hawaii would have been nice, it's hard to beat a one-hour drive from door to door.  That's gotta be worth an extra day or two of crash-free vacation time.

We've stayed here once before, exactly four years ago on a trip to explore San Diego's best surf spots.  How our lives have changed since then!  Then, we woke at dawn each morning to catch glassy morning waves.  Now we wake at dawn each morning out of sheer habit, responding to phantom baby cries.  But, in many ways I'm better suited now to truly enjoy a vacation in the traditional sense of sitting by the shore all day and not...doing...anything.  That old restlessness is mostly gone, or at least, in hibernation.  

My wife just snapped a picture of me typing this post, which I'll post below.  Just as on Facebook, it's difficult to post pictures of your vacation without seeming like a braggart.  So I post this with some reservation, but hear me out!  My blog is too often about the bad news.  Often the only times I feel like blogging are when things aren't going well.  So I hope you'll indulge me this once if I engage in a teeeeny tiny bit of boasting.

There, I'm done.  Thank you for that.

Oh by the way, it's 70 degrees and sunny.

OK, now I'm really done.  It's out of my system.  :)

Monday, November 5, 2012

....and bad news. (Hint: Food Poisoning)

Honestly, you can't make this stuff up!

Yesterday, I wrote about how I hadn't had a crash in five weeks.  I noted that I felt a possible crash coming on at the time of writing, but I was hopeful that it was another false alarm.

About two hours later, I was sitting in front of the TV innocently munching from a tub of mixed nuts from Trader J__'s.  Within five minutes, I started to feel stick to my stomach, so I stopped eating the nuts.  For the rest of the evening, I felt slightly sick to my stomach, but the feeling wasn't too concerning.  It felt more-or-less like the discomfort when one has eaten too much...almost like bloating.

I went to bed around 8:30.

At 10 I woke up with a raging storm in my gut and full fledged crash symptoms.  I snuck out of bed and went downstairs to the garage and grabbed a bucket.  I then spent the next three hours lying in a fetal position on the couch, occasionally vomiting into the bucket (and then, of course, cleaning out the bucket.)  At the risk of saying too much, I was also running to the bathroom frequently due to plumbing problems on the other end.

After a few hours, the stomach storm died down enough to attempt sleep, but we all know that's just the beginning of another battle.  Once the crash symptoms have been awaken, sleep usually proves elusive.  True to form, I lay on the couch attempting sleep for the rest of the night but never quite achieving it.

So now I'm home from work today with all the usual (for me) crash symptoms: body aches, muscle twitches, shortness of breath, tachycardia, and of course extreme flu-like malaise.  This not a good week for me to miss work because we have a deadline on a big motion opposition.  Luckily, I got ahead of the game and drafted the vast majority of the opposition last week, just in case another crash came along.  (I manage my time much better now with ME/CFS).

My co-workers will have to pick up the slack - there's simply no way I could be at work in my current condition.  I can barely get out of bed to take care of my basic needs.

What did I learn from all this?  First, that it was an incredibly unlucky coincidence to get food poisoning a few hours after writing about how great things were going.

Second, I'm not surprised that the food poisoning made my stomach feel bad, but I am a little surprised that it triggered a full-blown crash.  One thing I didn't mention in yesterday's post was that, over the last five weeks, I actually caught a cold that didn't trigger a crash.  I got the usual cold symptoms, but not the full-blown crash.  This was a first since getting ME/CFS.  I was hoping it was a sign that my immune system had healed itself somewhat.  

Now I know that the immune balance I seem to have achieved over the last five weeks is still delicate.  Any moderate to severe insult to my immune system is enough to trigger a crash.  The true test will be in how long it lasts and if it remains as severe as it is right now.  I'm hoping to wake up tomorrow morning after a full night's rest and feel at least 50% better.  We'll see....

Sunday, November 4, 2012

Some good news - health rating chart

I haven't blogged in about two weeks, which is by far the longest I've gone between posts since I started blogging about a year ago.  Part of the reason for the long hiatus is that I've been doing particularly well health-wise lately.  I haven't had a crash since late September!  That is also, by far, the longest no-crash streak I've had since getting sick.  Several times in the intervening weeks, I've felt as if a crash was starting (like today), but it never fully materialized.  I hope the one that feels like it's coming on now also turns out to be a false alarm.

I honestly don't know what to attribute this uptick in my health to.  Perhaps its just one of the unexplained cycles of CFS.  The nearest change in my routine was the addition of the far infrared sauna, so it's possible that the sauna is responsible for this improvement.

I haven't updated my monthly average health ratings chart in a while, so I will do that below by adding averages for the months of August, September, and October 2012.

Please don't read too much into the fact that my ratings seem high - they are not on a scale of 1 - 100, although that was my original intent.  My rating scale is shifted higher than most patients because I originally set my baseline too high and didn't give myself enough cushion at the top end.  100% for me would really be about 115 on my rating scale below. (For an explanation of why my rating scale is tilted higher than others' see here.)

[Chart below updated 10/1/13]

Month         Avg. Rating.     Notes             
Sept.          72.34                             
Oct.           77.16                  
Nov.           75.85               Started D-Ribose, Co-Q10, Acetyl-l carnitine, Vit. D3, and 
                                          vitamin powder
Dec.           80.39               Officially diagnosed; changed diet to low carb; added  
                                          ImmunoStim, NT 
                                          Factor, and pro-biotics
2011avg.   76.43

Jan.            79.07               Added T3 thyroid, pregnenolone, and magnesium
Feb.           72.73               Added methylation protocol; crashed twice due to low   
                                          potassium and flu
Mar.           77.94               Added Famvir (antiviral) and Nystatin (for Candida); briefly 
                                          tried LDN
Apr.            75.50      
May            82.03              Started Equilibrant, titrating from 2 - 4 tablets per day.
June           78.52              Upped Equilibrant dosage to 5 tab/day; got a cold early in   
                                         month; ImmunoStim ran out and is on back order.
July            81.12              Upped Equilibrant dosage to 6 tab/day, plus back on 
Aug.           76.90              Started using far infrared sauna
Sept.          79.80              Heavy Metal Detox
Oct.            84.10  
Nov.           85.43
Dec.           83.80

2012avg.  79.74

Jan.           85.55              Increased thyroid to 62.5 and resumed taking T.
Feb.          85.52              Cold in later part of this month
Mar.          85.03              Two colds this month, with sore throat and swollen tongue
Apr.           83.43              Cold earlier in month, then major crash near end of month
May.          81.61             Cold and crash from April continued into May.
June          85.73            
July           85.10              Second half of month had a bug that lingered.
Aug.          88.48              Implemented Yasko's "short cut" supps.
Sept.         87.96              Implemented Yasko's long route supps.
Oct.          85.97               Started month with stomach flu and then had light colds on
                                        and off all month
Nov.          86.86               Moved houses toward end of month.  Packed most of month
                                        and prepared old house for renting.  Very active month.
                                        Took Doxy and Cipro.
Dec.          87.35              Groin pain this month probably prevented an even higher
2013 Avg. 85.69


Jan.          88.16               Very busy this month with post-move activities.  Brain fog
                                        started coming back during last week of month.  Had cold
                                        that week too.
Feb.         88.60               Post-move activity started to slow down a little this month,
                                        but both kids sick
Mar.         86.55               Brain fog and leg numbness returned.  Not sure why.
Apr.          88.90               Brain fog and leg numbness went away when I suspended                                            
                                       taking B12 & folate.  Continued to get colds from the kids

May         91.16               Can't explain the sudden increase this month, except that I                                            
                                       always seems to do better in the summer.

June        90.33                A nasty cough and chest cold early in the month kept this                                            
                                       month from being higher

July         90.13                Two minor bugs this month but ended strong
Aug.        89.64                Prostatitis this month brought down my average
Sept.       90.70                Prostatitis a little better; cold near the end of the month
Oct.         86.93                Prostatitis continues; have been on 60+ days of antibiotics,                                                                                   which may have set immune system back.
Nov.        88.06                Prostatitis improving
Dec.        90.80                Good month despite some prostatitis

2014 avg.89.41


Jan.        87.19                Two colds this month.
Feb.        89.14                Continuing pain in groin
Mar.        93.58
Apr.         82.80               Major setback this month; possible cold
May        85.12                Continued setback; headaches and brain fog
June       89.96                Experimenting with A-L Complex this month
July         90.74
Aug.        86.80               Lots of sniffles and shortness of breath this month
Sept.       89.23               Went back on ImmunoStim toward end of month; lymph node
                                        swelling went away, but SOB and sniffles continue
Oct.        86.96               Caught a cold in middle of month; SOB continues to be major                                                                                problem
Nov.       88.26                Caught another cold toward end of month. SOB and post-
                                       nasal drip continue
Dec.       89.51  



Jan.       85.58  
Feb.       86.86               Began month still trying to recover from PC experiment; end
                                      of month was better. Resumed taking Testosterone (cream)
                                      toward end of month
Mar.      85.03                Flu began on 3/14 and symptoms continued to end of month
Apr.      88.16                Still recovering from cold/cough that began in March.
May      90.64                PND and SOB still main symptom.
June     88.90              
July      87.80                Shingles set in toward end of the month
Aug.     87.79                Shingles almost all month, resolved by end of month
Sept.    86.23                General viral symptoms all month: sore kidneys, lymph nodes,
Oct.      90.64                Back on Equilibrant (6/d), Immunostim (3/d), and B Complex.
Nov.     88.06                Was having a very good month until 11/14 when I caught a cold
Dec.     89.48                Cold still lingered early in the month.


Jan.     86.93                 Active EBV infection back.  High IgM antibodies.
Feb.     83.32                 Still with EBV, plus bad cold, plus arbitration stress
Mar.     84.06                 Was still getting over cold early in month, then had bad crash
                                      late in month (return of SOB, PND, and new type headache.)
Apr.     85.93                  Still active EBV.  Bad headache/brain fog and painful hands/
                                      fingers, improving some as the month went on.
May     87.06                 The month was decent until the 22 when I caught a bug.  Hand
                                     pain continues off and on, now joined by foot pain.
June    87.96                  One week trip out of state (cleaner air); supp holiday
July     87.67                First half of the month was phenomenal, but then crashed
Aug.    84.21                Possible re-flare of EBV in the first half of month
Sept.   84.80                Started high dose Valacyclovir, possible start up reactions
Oct.     84.64                Abdominal tenderness and gut problems getting worse
Nov.     87.34                Mostly a good month except for about 10 days of a cold, and
                                     continuing AT
Dec.    89.0                  First half of month was excellent (started back on PC and "short
                                     route" supplements.)  Flank pain and SIBO symptoms flared in
                                     second half

2017avg. 86.16

Jan.     88.19             Kidney and groin pain was pretty bad but otherwise decent
Feb.     87.75             Caught a cold mid-late month.  SIBO symptoms improving on
                                  protocol, but not gone
Mar.    90.58           
Apr.     88.80
May     89.09             SIBO continues; Peripheral Neuropathy pops up again
June    85.96             Fell down this month with PN & swollen lymph nodes.
                                  Obviously battling some infection
July     89.67          
Aug.    92.03
Sept.   91.46
Oct.     91.45   
Nov.    92.03           
Dec.    89.41             A cold (or two) popped up this month 

2018avg.  89.71      Best year yet since ME onset

Jan.    90.06            Slight dip in middle of the month due to cold-like symptoms; return
                                of PN symptoms in fingertips
Feb.    92.17            Other than a few mornings of vertigo, possibly my best month ever
Mar.    91.41         
Apr.     91.86            SIBO continues; experiments with OTC antihistamines for mast
                                 cells mostly failed
May    89.93             Small regression mostly due to very bad comeback of SIBO
                                 symptoms mid-month
June   87.93             Crashes at beginning and end of month
July    90.06             One crash of 2-3 days late in the month; exposure to sun seems
                                to help; SIBO improving after switching to Monash app for diet.
Aug.   93.54             Best month since tracking began (tied with March, 2015)
Sept.  90.03            Crashed mid-month that lasted rest of month.  Possible cold or                                        other bug.
Oct.    91.32 
Nov.   92.13       
Dec.   91.29         
2019avg.  91.02   

Jan.  89.54
Feb.  88.00              Caught a cold this month

[Outdated:] As you can see, October was my highest average yet [that comment is outdated as I continue to update this chart], and was over two full percentage points above my next highest month (May, 2012).

The biggest thing mitigating my excitement over this streak is the persistence of strange neuro symptoms, especially a slight trembling in my right hand.  It comes and goes, but it's scary when it's there.  

As the month of October went on, I found myself being more and more active.  The flip side of this is that whenever I start to get too active, I sometimes feel a crash coming on.  So far, I have been able to back off just in time and avoid the crash, but I have to really watch myself.   As I write this, I feel the last week of activity possibly catching up with me.  I plan to take it easy today and see if I can keep the no-crash streak alive.

Sunday, October 21, 2012

I try not to feel sorry for myself

My first eight months of sickness were marked by a difficult emotional coping period.   Looking back, I  seemed to have turned a corner at around the nine month mark, when it suddenly became easier to cope with my new limitations.  I reached a certain level of acceptance.  I didn't realize it was happening at the time, but I can see it now, especially when I review my old blog posts.

One of the things that helped me turn the corner was that, for some unknown reason, I stopped thinking so much about the activities that I used to enjoy.  First among those activities was surfing, but there are many, others, like jogging, drinking, yoga classes, snowboarding, and spontaneous road trips.

Well before I became sick, someone whose wisdom I value told me that "nothing in life is guaranteed." I keep coming back to that statement now whenever I'm tempting to dwell on thoughts of what I'm missing.  I try to remember that health, and the freedom to pursue superfluous recreational activities isn't guaranteed.  In fact, it's a privilege of a relatively small number of spoiled inhabitants of wealthy western countries. 

Sometimes I take this thought process a step further and remember the extreme unlikeliness of my existence here, on this planet.  There's an excellent quote on this topic from Bill Bryson's book, "A Short History of Nearly Everything."  
Not only have you been lucky enough to be attached since time immemorial to a favored evolutionary line, but you have also been extremely- make that miraculously- fortunate in your personal ancestry. Consider the fact that for 3.8 billion years, a period of time older than the Earth's mountains and rivers and oceans, everyone of your forbears on both sides has been attractive enough to find a mate, healthy enough to reproduce, and sufficiently blessed by fate and circumstances to live long enough to do so. Not one of your pertinent ancestors was squashed, devoured, drowned, starved, stranded, stuck fast, untimely wounded, or otherwise deflected from its life quest of delivering a tiny charge of genetic material to the right partner at the right moment in order to perpetuate the only possible sequence of hereditary combinations that could result - eventually, astoundingly, and all too briefly- in you.
Not only that, but I find myself remembering that, for most of human history, the average life expectancy of most humans was less than thirty years.  Even today, in many parts of the world, one can't reasonably expect to live past the age of 40.  Of course, I realize that these figures are a bit skewed by high infant mortality rates.  But the point is that, in at least one view of the cosmos, I'm living on borrowed time.  Every ounce of enjoyment I can squeeze out of life from this point forward is pure gravy.  It's bonus time.

Add to that the fact that, for most of human history and in many parts of the world today, life is/was often a full time exercise in survival.  It's hard to imagine that quality of life was too good when we (humans) were foraging for each meal, dodging predators, and walking miles for clean water.  Before modern medicine, a person was always one infected cut away from an untimely death.  Basically, life has always carried with it a heavy amount of suffering just based on the cruelties of nature (not even counting all the suffering that man inflicts on man).  This is why, I believe, that Buddhism grew out of the maxim that "life is suffering."

All this is to say that I'm trying to take life with ME/CFS in stride and put it into perspective.  Many of my fellow PWME's are much worse off--sometimes homebound or even bedbound.  I try to think of them when I'm tempted to sulk.  Or I think of those with terminal diseases and remember how lucky I am despite the challenges of ME/CFS.  Or I remember that, from a historical perspective, I'm on borrowed time and that everything from here on out is gravy.

Monday, October 15, 2012

Unfortunately, I'm more aware of germs now that I have ME/CFS

Before I came down with ME/CFS, I caught colds or flus about once or twice a year.  Now it's about once a month.  I've seen the evidence in my natural killer cell numbers from blood tests: my immune system just isn't performing up to snuff.

Besides the obvious drawback--I get sick more--another unfortunate side effect is that I'm more aware of germs and the possibility of getting sick now. There was a time when I was mostly oblivious to the germ spreaders around me, but it seems that I notice them now.  For instance, last week, at a restaurant, I heard a nearby cough and instinctively looked around.  I then watched as a gentleman walked down the aisle between two rows of tables, coughing every few steps.  He was essentially crop-dusting two rows of tables as he walked.  Nobody seemed to notice but me.

I miss those days when I was oblivious to these such people.  Maybe I was even one of those people.

When my wife and I vacationed in Tokyo, Japan, a few years ago, before I came down with ME/CFS, we noticed that every 8th or 10th person wore a surgical mask in public.  At first we thought, "how depressing to live in a society where people are so germaphobic."  But we came to discover that while some people wear masks to prevent themselves from getting sick, most wear them to prevent others from  getting sick.  This is a common courtesy in Japan.  When one is sick, he/she wears a surgical mask in public to prevent others from getting sick.

I'm not suggesting that we should adopt this custom here in America.  In fact, I could never see such a thing catching on.  We Americans are far too vain, and probably too unconcerned with societal well-being.  Japan is a much more collectivist culture.  In American, we mostly look out for ourselves and, if others get sick, "oh well!"  It would take a pandemic of some heretofore undiscovered deadly virus before Americans would ever embrace such a mask-wearing custom.  Maybe that's a good thing.

In the end, I don't know what the "right" balance is between carefree living and germaphobia, but I believe that it lies somewhere between America's carefree crop-dusting lifestyle and the Japan's borderline mania.  But now that my immune system is weaker than before, the Japanese way certainly doesn't look as crazy as it once did.  People need to take responsibility for their own germs.  Stay home.  Cough into the crux of your arm (not your hand), and wash your hands if you're sick.  But mostly just stay home.

Wednesday, October 10, 2012

What are the chances of recovery from ME/CFS?

I researched this issue about 10 months ago, and summarized my findings in this post.  My conclusion at the time was that my chances of recovery were somewhere between 5% and 50%.

Recently I came across this new article that provides a little more hope for those, like myself, looking for good news.  While the author doesn't reduce his findings to a percentage, he clearly believes that most PWMEs will "recover" in one sense or another.  His sources and authorities seem sound.

I'm going to have to remember this article and return to it every so often.  The problem is, while message boards are a great way to network with other patients and learn about new treatments, they also leave one with the impression that very few people are recovering.  But, as my father-in-law (a scientist) pointed out, the ME/CFS message board crowd is a "self-selecting" group.  The boards may not be the best places to get a sense of remission rates.

While the linked article certainly lifted my spirits, it also ends with a cautionary note about what is meant by "recovery."
"As I have already stated, a classic mistake people with CFS often make is to think recovery means "returning to how I was living before I got sick." The person will seek to recreate the conditions in which illness initially developed, and will of course relapse. Many are presented with this lesson repeatedly, until they shift their criteria for what "recovery" means. It is not desirable to return to "how it was before."  
I would love to return to exactly how I was before, but I'm not expecting that. If I can just get to a point where I can do some mild exercise without crashing, and plan family trips without worrying about whether a crash will interfere, I will be happy.

Sunday, October 7, 2012

Latest Appointment with Dr. W: Video Entry

I apologize for the poor quality of the audio, which makes it sound like I have a lisp....the S's all sound drawn out and emphasized.  I'm going to look into getting an external microphone to correct that issue.

Sunday, September 30, 2012

Far Infrared Sauna for ME/CFS Treatment

What if you could purchase a magic button for a few hundred dollars?  When you pressed the button it would give you about 50% more energy for a couple of hours after, then would make you fall into a restful sleep?  Would it be worth the price?  For me, that's what my portable far infrared (FIR) sauna has become.

Long term effects: still to be determined.

The decision to purchase an FIR sauna didn't come easy.  I felt I was already chasing a number of treatments and was reluctant to add yet another.  But it was one of those situations where I kept being confronted with people touting the benefits and it became hard to ignore.  First, one of my CFS doctors (Dr. W) had been urging me to buy a FIR sauna for several months.  He said that many of his clients  cite their FIR saunas as their most effective treatment.  Then I kept stumbling upon message board threads in which other PWMEs praised the benefits of FIR saunas.  Then a personal friend recommended it.  So I finally decided to take a chance.

Here's what I've figured out about FIR saunas so far:

What is a portable FIR sauna? 

Infrared saunas are simply saunas that generate their heat in a different way, which proponents claim heats the body at a deeper level.  As Wikipedia describes it: 
An infrared sauna uses infrared heaters to emit infrared radiant heat which is absorbed directly into the human body, unlike traditional saunas which heat the body indirectly via air or steam.
In the case of my FIR sauna, I'm not sure exactly how it works.  All I know is that I plug the thing in, and the heat just radiates right out of the walls of the sauna.  Within a few minutes of plugging it in, it is fully heated.

Most FIR saunas on the market are of the portable variety, meaning they collapse after use and can be stored under a bed or in a closet.  Within the portable category, there are several sub-varieties.  There are quite a few lay-down varieties.  One type is simply a mat that you lay on with a blanket over you, like this.  Another lay-down type consists of a semi-cylidrical dome that the user lays inside, like this.

Another common type is the pop-up tent style, where the user sits in a small camping-style folding chair inside a pop-up tent with a PVC frame.  The user's head and arms stick outside of the tent so he/she can watch TV or read a book.  This is the type I have.  Here's a picture of someone using the exact make and model that I have.

What Are the Claimed Benefits for PWMEs?

There are a number of claimed benefits of FIR saunas for PWME's and Lyme patients.  The most common claim is, given that the detoxification and methylation pathways are blocked in PWMEs, the sauna provides the body an alternative method of releasing toxins -- by sweating them out.  In other words, the normal detoxification pathways are broken, so the sauna opens up a bypass route.  

The manufacturer of my FIR sauna also claims that the sauna raises one's body temperature not only during use but for hours afterwards, creating a sort of "artificial fever," which helps a PWME's weakened immune system battle pathogens.  I must admit, this claim made a certain amount of sense to me.  I've heard the theory that viral-induced ME/CFS tricks the body into lowering it's temperature, making it more difficult for the immune system to fight the virus with heat and fever.  The FIR sauna could be a way of artificially raising the body's temperature, at least for a few hours a day.  

I've experimented with this theory by taking my temperature using an oral thermometer both before and after my sauna sessions.  Generally, I've found that the sauna raises my body temperature by about 1.0 degree.  Over the next hour and a half, my temperature gradually returns to pre-sauna temperatures.  Is this temporary increase in body temperature enough to substantially help the immune system?  I haven't found any answers to this question yet.  

A final benefit worth noting is the potential cancer-fighting aspect.  Since many PWME's have low Natural Killer Cell function, and therefore lower defenses against cancer, we might need a little outside help.  According to Wikipedia
On the other hand, hyperthermia generated by infrared saunas may kill or weaken tumor cells, and is controlled to limit effects on healthy cells. Tumor cells, with a disorganized and compact vascular structure, have difficulty dissipating heat. Hyperthermia may therefore cause cancerous cells to undergo apoptosis in direct response to applied heat, while healthy tissues can more easily maintain a normal temperature. 
Note: the manufacturer cautions that the user must be careful to drink a lot of water to replace the liquid that is sweated out, and possibly replace minerals as well.

My Experience with FIR Sauna 

First of all, I can't yet tell if the sauna is helping me permanently heal and recover.  I may need to wait two or three more months to make that determination.  But, I can tell you that it's already been worth the price just for the daily boost of energy it provides.

I try to use it every day, but in reality, I end up using it about 4-5 days a week.  I start off by plugging the sauna in and using the attached remote control panel to set the heat setting to the maximum of 5.  I place the remote in it's designated pocket.  Then I make sure the TV remote is neatly tucked into the other front pocket where I can reach it.  I strip down to my boxers, climb inside, and sit down in the camping chair.  I zip the sauna closed so that only my head is sticking out.  Then I use the remote control to set the time of the session to the maximum duration: 30 minutes.  Only my head is outside of the sauna, poking out above a neckhole in the top.

Occasionally I slip my arms out through the arm slits to change the TV channel, but other than that I just relax and enjoy whatever's on TV.  For the first 10 minutes, I don't sweat much, as my body temperature slowly rises.  But during the last 20 minutes, I am sweating constantly and profusely from seemingly every pore in my body.  About every 30 seconds, I feel of bead of sweat give in to gravity and run down my torso, arm or legs.

Despite the high temperature, somehow this isn't as unbearable as the heat generated by traditional saunas.  I think this is because it helps to have my head outside of the sauna where it can stay cool and comfortable.  On the other hand, Wikipedia says: "This is because far-infrared rays do not heat the air inside the sauna, but they still heat the body."

By the time I climb out of the sauna after 30 minutes, I am soaking wet, as if I've just come out of the shower.  My boxers could be wrung out.  If my wife is in the room, I'll threaten to wrap her in a bear hug, which makes her squeal and run away, much to my amusement.  I then rinse off in the shower.

For the first couple of hours after a sauna session, I feel a comfortable burst of energy, comparable only to the feeling I used to get after a jog or a workout.  You know, the feeling where you feel calm but somehow energized and lucid at the same time?  In fact, it's exactly like that old post-workout feeling -- I can't distinguish it.  It feels like my circulation is finally working again.  That's why I said above, it's like having a magic button that I can press to reset how I feel.

Within a couple of hours after the session, I start to feel sleepy...just like after a workout.  Typically, I've found that I fall asleep easier and and sleep sounder after a sauna session.

Just to be clear, I don't have any affiliation with any of the sauna manufacturers.  I've simply found FIR saunas to be one of my more effective treatments and wanted to spread the word.  In fact, any sauna manufacturers who try to spam my comments section will not only be deleted but made an example out of!