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

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

Friday, December 20, 2013

My experience with acupuncture as a treatment for ME/CFS

I've been interested in acupuncture as a possible treatment for ME/CFS for about a year and halfever since reading an article linked in my prior blog post about acupuncture being a potential Th1 immune booster.  Nobody would expect acupuncture to cure them of ME/CFS, but I figured it was possible that acupuncture could provide marginal improvements in immunity and energy and potentially halt a crash. But every time I wanted to try it in the past, there was always another treatment that seemed like a higher priority.  Then last week I started to feel a mini-crash coming on so I finally scheduled an appointment with a local acupuncturist.

Expectations

One the one hand, I've known at least two other PWMEs who tried acupuncture and neither of them stuck with it.  The first said she felt only a tiny bit better after each session, but it wasn't enough to continue paying for such an expensive treatment (usually not covered by insurance).  The second actually reported that acupuncture made her worse, and that it brought on an insatiable hunger.

On the other hand, there was the article linked above (which admittedly only dealt with electro-acupuncture... on mice).  So I had two anecdotal stories and a vague article about a study on mice.  I would just have to try it myself to know for sure.  For science!

Finding an Acupuncturist

I was determined to hire the best acupuncturist in my area, so I took to the internet and Yelp until I was satisfied that I had found the best.  Frankly, I really wanted my acupuncturist to be Asian, trained in Asia, since acupuncture is a Chinese art/science.  The person I identified as "the best" was actually Japanese (not Chinese) but somehow I felt that that was better than a random Caucasian.  She had a very quintessential Japanese female name.  I'll call her Midori.*

Preparation

Midori's office is in the same medical building as my GP.  I arrived 15 minutes early to fill out all the usual paperwork as with any first doctor appointment.  Of the 10 or 12 boxes that I could check as "reasons for your visit," the top was Chronic Fatigue Syndrome.  (They weren't alphabetized)  Another choice said, "Immunity."  I took this as a good sign.   

The receptionist determined that my insurance would cover $30 of the $85 fee, so I settled up the difference and was the lead to a room that was a cross between a doctor's exam room and a day spa massage room.  Actually it was more like an exam room in most respects, except it had a massage table instead of an exam table, and the room was filled with the sounds of some dreamy new age music ala a day spa.

Midori came in shortly after and asked me a series of health-related questions for about 10 minutes. What's your diet like?  Do you eat fish regularly? Do you exercise?  Her Japanese-American accent was quite thick, so we had to repeat things for each other occasionally to make sure there were no unfortunate misunderstandings.  Annoyingly, she referred to my condition several times as simply "chronic fatigue" and asked if I "just want more energy."  I gently refocused the discussion to my immune system deficiencies and emphasized immune boosting and inflammation reduction as the goal of treatment. She seemed to understand.  She said that I should drink at least one glass of water with lemon in it each daythat this is good for my liver, which in turn is good for immunity.

At the end of this interview, Midori said that she would focus on total body circulation and flow of qi (pronounced 'chi'), both of which are good for immunity.  

"Tons of Needle All Over" Me

Unlike a massage, there is apparently no removing of the pants in acupuncture.  I learned this only after removing my pants and being instructed to put them back on.  I only had to remove my shirt and roll up my pant legs to the calves and I was good to go.  I laid face down on the table first. Midori pinched and poked me on my neck and my ankles, perhaps taking stock of my qi.  She said that the needles are thinner than the width of a human hair and that I wouldn't feel much at all.

As I lay with my face in the massage table's padded face-hole, Midori inserted two needles into the back of my neck.  She was right, I hardly felt a thing.  I had to take her word for it that there were, in fact, needles in me.  Four or five more needles were inserted into my back, and two more in each foot/ankle area.  

Midori said in an easy, sleepy tone, "there are now tons of needles all over your body. I  will come back in ten minutes."  

In ten minutes, Midori came back and removed all the back needles and instructed me to turn over onto my back. This time, she put the needles in my hands, arms, chest, and feet, culminating with a single needle at the very top of my head.  Again she said the thing about "tons of needles." I smiled at the mental image.  And then she left the room again for another ten minutes.

This time I had a chance to look at the needles.  Unlike in pictures and TV, the needles didn't stick straight out into the air.  They hung curled over and limp from their insertion points.  

I tried to determine if I felt any different, but Midori had placed a portable heat lamp over me so it was impossible to tell whether I was feeling the mysterious qi or just a GE lightbulb.  I felt like I was a fast food meal.  

Midori soon reentered the room, removed the needles and told me to put the rest of my clothes back on. Back in the reception area she told me that I needed more work and that she'd like to see me next week.  I said I'd think about it.  Her parting advice was to drink plenty of water to flush out my system now that all the toxins had been dislodged into circulation.

The After Effects

As I walked out of the building and toward my car, I assessed how I felt. Quite frankly, I felt that the whole experience was a "poor man's" massage.  I felt the familiar boost of calming energy that one gets after a professional massage, but only about 50-75% of it.  I could tell that my circulation was better and my head was clearer, but again, I couldn't help feeling that it wasn't quite as effective as a one-hour Swedish.  And just as after a massage, I felt intense thirst.  I'm convinced that both massage and acupuncture work in similar waysthat somehow improved circulation is the point of both, and that both lead to unquenchable thirst.  In different degrees. 

I also noticed that the glands in my neck felt swollen, whereas they weren't before the treatment.  As the day went on, this evolved into the tongue swelling that I often get when my glands get particularly swollen.  I felt that the treatment may have stimulated my immune system, but perhaps stimulated the wrong side of it.  This felt more like Th2 activation than Th1.

Now, two days post-treatment, I haven't noticed much positive improvement.  If anything, the treatment had more undesirable affects (gland swelling) than benefits (slight increase in energy on the day of treatment.)  I'm glad I tried it and satisfied my curiosity, but I don't think I'll be patronizing acupuncture again.  My sense from Yelp reviews is that acupuncture works better for people who have pain issues. In the future, if I feel like I really need to part with $85, I'll get a massage instead.



*not her real name

Thursday, December 19, 2013

What fills me with inexplicable rage (ME/CFS related)

Before ME/CFS, there were only two things that filled me with irrational anger and irritability: The first was any scraping of a metal bowl (such as from a mixer) with a metal spoon. Metal on metal....I just hate it.

The second was someone chewing cereal or an apple loudly, especially with their mouth open.

Now thanks to ME, I have a third one, and it's when people have sneezing or coughing fits. I just want to yell at them, "Get ahold of yourself, Typhoid Mary!"

I'm trying so hard to not let my anger at my nice coworker show, but I'm afraid she knows I loathe her right now.  You should see her -- she looks like she just wrestled a bear in the arctic; hair all a-mess and nose as red as a wino's.  Why is she here?

It's bad enough to expose fully healthy co-workers to your germ-y hands and foul air, but to do it to immuno-compromised people?  That's beyond the pale.  And I don't mean to just pick on her -- there are a ton of people walking around in public this time of year like the goddamn walking dead.  *Sigh* I shouldn't be too hard on her, she's a good person just trying to make a living for her family.  The point is more about me -- the changes that ME/CFS has brought over me and my outlook on certain things.     

(Side note: I had to add the "ME/CFS related" parenthetical to my title because I know from past experience that if my title is not ME/CFS related, I start getting unwelcome visits from all over the internet.  And let's just say I don't want to meet the people who search "inexplicable rage.")

Tuesday, December 17, 2013

Some pretty big news from Dr. C

I had my latest appointment with Dr. C last Friday.  One of the great things about Dr. C is that he never limits our discussion to my personal struggle with ME/CFS.  He always broadens the discussion into the latest developments in ME/CFS research.  I never have to initiate this broader discussionhe brings it up on his own.  Since I assume he does this with all patients, one wonders how he doesn't drive himself insane having the same conversation with patients after patient all day long.  I can only assume that he recognizes how starved we as patients are for the latest research news and takes pity on us.  He never makes these discussions feel rushedit's always as if we're sitting in a coffee shop chatting as friends.

                                                                     Dr. Lipkin's Findings

The discussion started with the major findings of Dr. Ian Lipkin that made headlines back in September. (Here's a link to a Phoenix Rising article about those findings.)  Dr. C always has always heaped effusive priase for the work of his fellow ME/CFS researchers, as he did with Dr. Lipkin.  Dr. C pointed out, however, that many people have misunderstood the significance of Lipkin's research, believing that a viral cause has all but been ruled out.  To put Lipkin's research into better context, Dr. C pointed out that not only was Lipkin's virus hunt limited to the blood, it was limited to blood plasma.  Dr. Lipkin did not look for viruses in the white blood cells of ME/CFS patients, which is a better place to look for possible ME/CFS-causing viruses in the blood, according to Dr. C.

When Dr. C did his own virus hunt in the blood of ME/CFS patients years ago, he found enteroviruses in approximately 60% of patients' white blood cells, as opposed to only 2 in 20 in the plasma.  Admittedly, he used a small sample size.

As many people know, Dr. C firmly believes that the place to hunt for any viral cause of ME/CFS (which he postulates is a enteroviruses) is in the body's tissues.  Dr. C has always focused on biopsies of the gut, partly because the gut is the easiest internal organ from which to obtain a biopsy.

Getting back to Dr. Lipkin for a moment, Dr. C noted that Lipkin's next big endeavor is to look for evidence of viral infection in the stool samples of ME/CFS  patients.  According to Dr. C however, this is not likely to be fruitful.  If looking for viruses in the blood is like looking for a needle in a haystack, looking for viruses in stool samples is like looking for a needle in a haystack that is 10x as large.  (He said all this while heaping praise on Dr. Lipkin, so while it is clear that while Dr. C prefers to pursue other theories, the has the utmost respect for Dr. Lipkin.)  At the same time he said, "I certainly have a number of questions for him [Dr. Lipkin] at the March conference"referring to the upcoming IACSF/ME conference in San Francisco.

Finally, Dr. C also mentioned that Lipkin's next big treatment experiment will be with cytokine blocking drugs, noting that some of Lipkin's recent research has confirmed the "cytokine storm" that many of us believe is a cause of our rampant inflammation.  Without sounding too contrarian, Dr. C again stated that he would be hesitant about recommending cytokine treatment to any of his other patients until further research.

He gave the example of one of his patients who had terrible neck stiffness due to a cytokine storm concentrated in that area.  This patient was treated with an experimental cytokine blocking medicine by another doctor, and two months into the treatment the patient began to have terrible neurological problems, including major involuntary spasms all over his body and the gradual loss of all speech. The patient can only speak now through a computer, ala Steven Hawking.  Dr. C is now attempting to help recover the young man's speech through IVIG treatment.  I asked if Dr. C thought these symptoms were side affects of the cytokine blocking drug and he said, "we think so."

New Antiviral Drugs

Dr. C has long discussed the possibly that certain antiviral drugs "in the pipeline" would help treat ME/CFS.  He states that any new antiviral drug gives hope to our community.  In January, 2014, a drug company is expected to launch a new Hepatitis C antiviral drug that Dr. C plans to test on ME/CFS patients. The drug apparently costs, not joke, about $30,000 per month!  No word on how or by whom this experiment would be paid for.

Later in 2014, two other drug companies are expected to drop competing Hep C antivirals.  This should introduce competition in to the market and hopefully give ME/CFS patients two additional chances to find an effective antiviral.  

Other than those three impending Hep C drugs, Dr. C said there is no other "chatter" about additional antiviral drugs in the pipeline. But he noted that this lack of chatter may be because drug companies like to keep such projects secret for fear of being ripped off and beat to the marketplace by competitors.  

                                                                Dr. C's New Findings

Not to bury the lead but.... Dr. C says that he obtained tissues samples from a recent patient of his who, tragically, committed suicide.  The family was kind enough to donate the body to Dr. C's research. (Side note: I'm trying to walk a fine line here because Dr. C states that his findings will be announced at the March IACFS conference and not before then, so I don't want to steal his thunder).  All I can reveal at this point is that Dr. C found a raging enterovirus infection all throughout a major, very critical organ from this deceased patient's body.  (I'm sorry, I can't reveal the organ).  Dr. C is certain that it is the same enterovirus he has been finding in the linings of the guts of his patients for years.  (Although, he noted that this enterovirus was detected by the protein that it produces, not directly by sequencing the virus, which is very expensive.  When and if he ever obtains the funds, he would like to sequence the virus from his organ sample and conclusively prove that it is the same enterovirus from the gut.)

My Revised Game Plan

To quickly summarize my past work with Dr. Chia: I had success and continue to have success with his oxymatrine treatment called by the brand name Equilibrant.  This helped me improve by about 10%.  But none of Dr. C's additional pharmacological treatments did anything for me, and some had bad side affects.  I've tried Rifampin, Epivir, Amantadine, and inosine among others.

After some discussion, we decided to revisit some of the failed treatments to confirm that the side affects I thought I experienced were truly from the drugs and not from, say, a crash.  So the plan is to, in addition to continuing Equilibrant, take both inosine and Epivir together in combination.  We'll see if that makes a difference this time.

Possible Sad News

Toward the end of the appointment, in the context of another discussion, Dr. C stated that he would like to move on to other areas of research besides ME/CFS.  Then he asked rhetorically, "but then who would take care of my patients? You see, for diseases like HIV where the treatment routine is so well established and understood, a nurse practitioner can be a patient's sole medical provider.  But with this disease, my patients need me to treat them individually."  So it was unclear if Dr. C would actually move on from ME/CFS, or if he was simply expressing the desire to.  

I told him that we need him and that he is practically a celebrity in certain circles and why give that up? I'm not sure it helped... 

Tuesday, December 3, 2013

A quick follow-up to my groin pain post

I've now been taking Cipro since last Wednesday night (12 doses out of a total of 20) and I still have the pain.  Oddly, there was a  reprieve on Sunday, when I felt almost no pain all day, and then it came right back on Monday.  I have been very good about taking Cipro apart from other supplements and food containing minerals, to ensure absorption.  The D-Mannose has not helped either.

I now believe that the issue probably is not bacterial.

I have a return appointment with the urologist on Monday, at which point I will explore other possibilities with him.  I posted about this issue on an ME/CFS forum recently and got a surprising number of good suggestions and possibilities.  One possibility I wonder about is if it could be candida in the UT, due to deficient immunity.  I may try a few days of Diflucan and see if that helps.

Thanks to everyone who has given me feedback and advice on this since my last post. We truly have a knowledgeable and compassionate community that (for the most part) works together to help one another.

P.S.  I am aware of the significant risks that Cipro poses, and believe me, I did not take them lightly.  I accepted the risk and unfortunately it did not pay off.  I thank those who raised the issue nonetheless.

Saturday, November 30, 2013

What a pain in the d***

Two major things have been going on in my life since I last blogged (which feels like a year ago to me.) About 4 or 5 weeks ago, I began packing for my big move (to a nearby city).  Around the same time, I started getting pain in my groin, just like the last time I packed and moved in 2005.  (Stop reading here if you're uncomfortable with frank discussions of male anatomy).  This pain persisted for about three weeks until I finally visited a urologist.  He determined that I must have prostatitis, the male version of a urinary tract infection (UTI), and prescribed oral antibiotics (Doxycycline).

I started taking Doxy a few days before moving day and, with huge relief, it cleared up the pain just in time for moving day.  Moving day went off without a hitch (more on that later), and I was pain free all day.

But then the pain came right back a couple of days later, worse than ever.

Worried now that I might have an infection that was too strong for Doxy, I called the urologist and he switched me to a stronger antibiotic, Cipro.  What worries me at the moment is that I've been on the Cirpo (2x day) since Wednesday night (7 doses) and the pain still persists!

I'm wondering now if this isn't a bacterial infection at all.  Before I visited the urologist, I took a few home UTI tests by AZO and they were all negative for infection.  The urologist also had me give a urine sample, but he never reported the results to me and I forgot to ask.  I note that he only proclaimed that I had prostatitis after listening to me describe my symptoms, so I can only conclude he diagnosed me clinically, not by urine sample results.

In the meantime, I have also been taking D-Mannose powder, which came strongly recommended to me by a few message board ME/CFS friends who have dealt with chronic UTIs (part of the fun of having a weak immune system, I suppose.)  So I have also been taking D-Mannose twice per day since Wednesday with no benefit yet.

I suspect this will be an ongoing issue for some time...

Let me tell you, I never thought I'd be discussing my private parts on the internet, but now that I am, it's really not too scary.  We're all adults here, right?

Right....?  [I'm not so sure about myself]

                                                     ______________________

One of the good things to come out of this is that the lymph nodes in my neck and armpit have stopped feeling swollen.  I know that some PWMEs deal with lymph node swelling every single day, but for me, I only started to experience serious, every-day swelling starting about 6 weeks ago, before the groin pain.  (I thought they might be connected, but the urologist said that was impossible.)

Anyway, the antibiotics have put a stop to that daily discomfort for now, suggesting I was dealing with a chronic, low-level bacterial infection somewhere in my body.  I have no idea where.  Top suspects are the lungs, sinuses and/or throat.

                                                      _____________________

The move:

Leading up to the day of the move, I had one wish: that I would not be crashed on the day of the move.  I got that wish.  Even though I had very poor sleep the two nights before the move, I woke up the day of the move with decent health (relative to my baseline*) and adrenaline carried me for the next 10 hours or so.  It was by far the most active I've been since getting ME/CFS.  It was enough activity that I would have been exhausted at the end of the day even before ME/CFS.

I remember finally laying down in bed that night (in a strange new bedroom) and thinking, "With a day like that, I'm due for a big crash."

That crash never came, and the move was just over a week ago.  While I certainly did experience some PEM a day or two after the move, nothing could be described as a crash.

Since then I have been calling contractors and repairmen of all types trying to get this new house in order.  Many of my calls were for tasks that I would have tackled myself prior to ME/CFS.  But this is my new reality and I'm slowly getting used to it.

This new house (which I truly love) is not a low-maintenance house by any means. Which suggests it's not ideal for a PWME.  And I'm OK with that.  The house is old (by California standards) and it's got character and charm, but with that comes maintenance.  Much of this maintenance I hope to do myself, with only proper pacing of course.

I have a running mental list of about 60 or 70 projects, both large and small, that I want to undertake to get this house into the shape I want it.  My instinct tell me to attack them all at once.  The old me would have worked from dawn until dusk over this long holiday weekend until I completed as many tasks as possible each day.

My new reality means pacing and patience, something that is extremely difficult for me.  Nevertheless, I am slowly beginning to accept that (a) I don't have to do everything myself, and (b) it doesn't all have to get done as soon as humanly possible.

I'm learning that I can enjoy the charms of this house even if it isn't set up exactly the way I want it...yet.  And I also realize that I won't enjoy the charms of this house as much if I'm laid up from a nasty crash.

                                                          ______________________

For those that gave me advice and support in the comments section of my prior post related to the move, thank you!  I truly appreciate everything.

Tuesday, October 22, 2013

Taking Risks In Life: Harder with ME/CFS

First, this is the longest I've gone between blog posts, but I've always promised myself that I would not blog just to blog -- that I would only blog when I had something I felt needed to be said.
                                                                  ____________________

August and September were by far my best months since getting ME/CFS.  They both averaged at least 3 percentage points higher on my daily health rating chart than my next highest month. That may not sound like much, but it is quite significant.

I'm sure the improvement would have continued into October if it weren't for cold & flu season.  Each Fall that I've been ill (this is only my third), a little bit of a "funk" sets in as I realize that I will be battling a continuous string of bugs for the next 5 months.  Maybe you've heard of the term "chain smoker" for people who light their next cigarette with the smoldering butt of the last, and so forth. Well, with my weak immune system, I'm basically a "chain sicker" throughout fall and winter.  The next sickness rises right out of the ashes of the last.  It can be a quite frustrating when that first cold of the season sets in and I know I'm in for a long battle ahead.
                                                                _____________________

For many patients, ME/CFS puts their dreams unequivocally out of reach.  Bedridden or housebound patients have no choice to but completely reset their goals and expectations.  Their lives are profoundly and irrevocably thrown into chaos.  To them, I'm sure my problems must seem like a joke.  For those of us lucky enough (or early enough) to be only "moderately" affected, ME/CFS works differently.  It casts a cloud of uncertainty over nearly ever significant life decision.  Every decision that involves future events of any kind, from meeting a friend for lunch, to moving residences, becomes a leap of faith. Contingency plans must be built into everything.  Flakiness becomes a part of who we are (and this kills those of us who, prior to ME/CFS, abhorred flakiness.)

My wife and I recently decided to buy a new home.  We are in escrow now.  The new home is near to our current home, but with a little more room for our recently expanded family.  A tad more charm.  A little more character.

This was one of the toughest decisions I have had to make, and all because of the unpredictability that ME/CFS presents.  Without that hitch, it would have been a "no-brainer."

The new home will, of course, come with a larger mortgage payment.  This payment would probably not be affordable on mine or my wife's salary alone.  Our combined salaries are necessary.

I know from conversations with veteran patients that many would caution me against taking this risk. Taking this risk assumes that I will be able to continue working at my job, and potentially adds some of that worst-of-all triggers: stress.  Undoubtedly, the safe decision would be to stay in the current home, especially since many patients don't experience their first major downturn until around the 3 year mark (and I'm not there yet.)  And for a while, this was the plan: to play it safe and stay in the current house until I got a better sense of where my disease progression was headed.

Then the economists began saying that interest rates would likely spike in 2014, and may never be this low again.  Suddenly there was a "now or never" urgency, and I weighed the risks again.  Looking at it with fresh perspective, I figured the worst that could happen is that I am forced to quit work and we have to move back to a more affordable house.  (We are keeping the old house as a rental, so it would be logical to kick the renters out and move back).  So, there is a potential fallback plan.

What ultimately changed my mind was when I considered that there is risk in both acting and not acting on a dream.  Before, I was only considering the risk of moving and then later regretting it.  But when I considered the risk of not moving, only to discover that my health would hold steady or improve just as interest rates climbed, I realized that both options seemed equally risky.  So I might as well go for the one that gives me at least a chance at one of my dreams.

If things go wrong and we are forced to downgrade, I will accept that.

Our move date is currently set for late November, assuming escrow goes smoothly.  Now the challenge is to accomplish this move without a major crash.  I have corresponded with several patients for whom moving was a trigger for relapse.  I have already "pushed it" too hard this past weekend, even though I only packed a handful of boxes.  I am paying the price now, with a major return of flank pain and PEM. Yet it goes against every instinct I have to pay people to do things that I could do myself (like packing).  It may come to that anyway...

Thank you, as always, for reading.  If you have any moving advice, I would love to hear it.



Monday, September 30, 2013

My Lifestyle Changes in Pictures

Remembering back to the first month after I learned I had ME/CFS, I was reading everything I could get my hands on relating to this disease, trying to figure out exactly what I was dealing with.  I don't remember where I read it, but one of the first pieces of advice I ever read stated, "there is no established course of treatment for ME/CFS. A patient must try to live as healthy a life as possible and hope they are one of the lucky ones that recovers."  Although it's been two years and probably over 50 treatments since then, I still keep coming back to that simple mantra.

This is not to say that my treatments aren't helping.  They are.  But other than 1 or 2 prescription drugs, most of my treatments and lifestyle changes simply boil down to "living healthier."  In a way, even dietary supplements are just shortcuts to healthier eating.  They allow us to ingest more vitamins, minerals and herbs than would be practical through diet.

This post focuses not on supplements or drugs or even "treatments" per se.  This post is about all the little lifestyle changes I've made to try to live healthier and give myself the best chance to improve.  In some cases, I simply feature items that make life easier with ME/CFS, but offer no health benefit.  To the extent that some of these lifestyle changes feature products, let's be clear that I'm not trying to endorse these products.  This post is more about not using the old products that these featured products replaced.

                                                              _____________________

These first few lifestyle changes all deal with improving sleep.  At least two ME/CFS specialists have told me that "it all starts with sleep."  They said that real improvement is almost impossible until a patient fixes their sleep disturbances.  So, at the outset, I made sleep a major priority.  (I should mention that I've known other patients who have tried what I've outlined below and still struggle with sleep issues, so it's clear  that results depend on the individual and how severe their ME/CFS is.)

Opaque window shades:  Most window coverings let light through, so the nighttime environment in a room still can be fairly illuminated.  These window shades are completely opaque and help keep the room pitch black.  I never realized how much of a difference a darkened room could make until these shades went in.


In a similar vein to the above, I unplug my bedroom DVR every night and make sure there are no other electronics giving off small amounts of light.  You might be surprised - it makes a difference.  Some would recommend not even having a TV in my bedroom but, hey, this is still America and I still have my first world addictions.


Body Pillow:  I learned of the concept of a body pillow when my wife purchased one during her first pregnancy and then continued to use one even after the pregnancy. I used to tease her about this enormous stuffed "turd" and the fact that it took up half of the bed.  Then one morning, about 6 months after I contracted ME/CFS, my wife had already gotten out of bed and I thought, "what the heck."  I threw a leg over the body pillow and pulled it close.  I knew right then I would never sleep without a body pillow again.

It's such an obvious concept, yet it never occurred to me or most other people.  It is very unnatural for your ankle, knee, and elbow to be pressed up against its other corresponding ankle, knee and elbow.  The natural position for these body parts is at least shoulder width apart.  But for us side-sleepers, that's what happens all night - they come together, which strains our bodies, particularly the back. It was pretty amazing to me what a difference in comfort and sleep quality it made simply by putting a little separation between these body parts with the use of a body pillow.  Now it's not uncommon for me to fall asleep in one position and wake up in that same position 7.5 hours later.  I realized that a lot of tossing and turning that goes on at night must be due to discomfort from lying too long in a particular sleeping position.  Each time you toss and turn, you wake up just a little, so if you can minimize these disturbances, it really seems to improve sleep.

Now my wife is the one who teases me, a grown man who cuddles with a pillow every night.  But I usually don't hear the teasing because I'm too busy slumbering.

(Tip: Most body pillows are shaped like a candy cane, with a curve at one end only.  If you buy one, get one that is curved at both ends.  Your head rests in the top curve and the bottom curve goes between your ankles. This ankle separation is key, in my opinion, and most body pillows don't provide it.)



I sleep with earplugs every night.  I started doing this after reading several reports about how low level noises--noises we're not even aware of--interfere with sleep.  (e.g. Sleep Foundation)  My sleep definitely improved with earplugs.



Natural toothpaste:  The original reason I switched to natural toothpaste was because my genetic testing & methylation panel suggested that I should avoid sources of sulfate as a CBS+ individual.  But since then, I've come across other good reasons, particularly, the avoidance of fluoride.  Note that only some types of Tom's of Maine toothpaste are flouride free.  It's such a simple and easy switch to make that I can't believe I didn't do it sooner.


Most of us, I would imagine, have options for filtered water in our kitchens.  Maybe it's from the built-in dispenser in the refrigerator, or bottled water from the refrigerator.  But what do you do when you're at your bathroom counter brushing your teeth, or taking supplements, or simply getting a drink of water in the middle of the night?  A lucky few have whole-home water filtration systems, but I'm not one of them.  Instead I found this small filter that attaches to the tap and filters all water that comes through the faucet.  



Because going "full hippie" is not an option for me, I still need to use some type of deodorant.  But the problem with almost all deodorants is that they contain aluminum.  Many natural living enthusiasts will tell you this aluminum is problematic even for healthy people, but according to Dr. Yasko, ME/CFS patients have particular trouble eliminating aluminum from the system due to our broken detoxification mechanisms.  All that aluminium just builds up in our systems and then leads to cascade of other problems, especially in the gut, according to Yasko.  Yasko is big on detox of all metals but aluminum in particular, so this switch was a no-brainer for me. 

But, I recently read a report that even Tom's of Maine contains an ingredient, propylene glycol, that is linked to cancer and developmental issues.  So I'm looking for a new alternative.  I refuse to resort to patchouli oil!  


Ahh, the old supplement bin.  Many of us have one.  This is the box that I would never, ever show anyone outside the ME/CFS community, lest they think I'm insane.  They just wouldn't get it.   This box not only contains all those half-used bottles of supplements that, for one reason or another, didn't work out, but also all my in-waiting backup bottles, since buying in bulk saves money.  


The health records binder.  Actually I have another one of these in a closet somewhere with all of my labs and doctor reports.  This one pictured here is just for my nutrigenomics research alone.  Again, I would never show this to an outsider.  


That weird black box in the corner of my bedroom is my portable infrared sauna.  I sit inside it on a folding chair, and my head sticks out a hole in the top (under that flap).  I watch TV or read a book for half an hour and come out looking like a glazed ham. I've written about this many times before here but I'll say again that I credit this sauna for the increase in my baseline that occurred around September/October of 2012.  My body seemed to really need this extra mode of detoxification.


Supplement case:  I'm one of the fortunate ones who is not housebound, so I sometimes find myself out of the house at supplement time (which for me is 3 times a day).  So I keep all my supplements in this soft cooler and just tote the whole damned mini pharmacy around in my car.  It's not sexy, but it works for me.


Speaking of things that are not sexy, I piss on plastic sticks once a week just to keep track of sulfate and body PH.  It's like I'm a pool boy, only much less tan.    


Speaking of pool boys, here is my backyard Jacuzzi that I owned prior to ME/CFS, but had given up since becoming ill because of the affect of the absorbed chemicals on a broken detoxification system. However, thanks to NoPosterGirl, who alerted me to the fact that Dr. Cheney is recommending hydrotherapy as a way for ME/CFS patients to get their all-important lymphatic drainage flowing and as a way of reducing cytokins, I started looking into ways to maintain the spa water quality without chemicals. I discovered a way to do it using ozone and mineral sticks.  So I'm back in the spa, baby.  Like the sauna, it usually leaves me with a feeling very similar to that old after-workout feeling.  Intuitively, you just know it's good for you.


I use the term "paleo" diet just for ease of reference, but my diet really isn't as complicated as all that. Basically I just avoid sugar, grains, casein and a few other things that cause problems for people with candida and ME/CFS.  I try to keep my carb count to under 70 per day, but I only keep track in a very vague sense and don't freak out if I go over.  I could really do an entire post on all the diet-related products I have found, but who wants to read that.  Suffice it to say, I've been finding more and more products at my local organic grocery store that replace old staples like crackers, bread, chocolate & soft drinks. They're hard to find and more expensive than the original, but worth every penny.   


Foam Roller:  When you're severely limited in the amount of physical activity you can do, foam rollers are a good way to get that "stretched out" feeling without the workout.  


Thanks for reading.  I know that we all have different lifestyle changes that work for us, and I always enjoy reading about the ingenuity of the ME/CFS community.  I've read posts from people making their own accommodations that blow away anything in this post.  There was a guy with severe OI/POTS who build a "desk" that allowed him to use his computer while lying flat on his back (hint: the monitor was face down on a glass table).  I've seen jerry-rigged air filtration systems and many other ingenious inventions. Please, if you have other lifestyle changes that you think are worth sharing, I'd love to hear about them.  

Wednesday, September 25, 2013

An open letter by top ME/CFS doctors to HHS

By now everyone in the ME/CFS community (in America anyway) is familiar with the controversy over the U.S. Department of Health and Human Services (HHS) hiring an outside contractor to develop a new definition of ME/CFS.  If you've somehow missed everything that's occurred on this front in the past month, here's the 50 peso version:
HHS announced that they were going hire an outside contractor to, among other things, redefine ME/CFS and create diagnostic criteria.  The leading candidate was a company called the Institute of Medicine (IOM).  IOM had previously been hired to conduct similar work related to Gulf War Syndrome and, by most accounts, completely botched the job, leading to much frustration by GWS sufferers.  Knowing this, the ME/CFS community launched a grass roots email campaign to stop the IOM contract.  Not long after, HHS announced that they cancelled their plans to hire IOM. The ME/CFS community breathed a sigh of relief. Several days later, HHS reversed course and hired IOM anyway.
Now a group of leading ME/CFS doctors and researchers have published an open letter to the director of HHS imploring her to reconsider the entire project and, particularly, to adopt the Canadian Consensus Criteria (CCC) definition of ME/CFS.  The letter is direct, forceful and is cosigned by all the big names.  It will be interesting to see if HHS has the guts to ignore this (but history tells us they will).

The letter is republished here on ProHealth.

Wednesday, September 11, 2013

New Study Results on Viral Infection in ME/CFS Making the Rounds

These new study results, as reported in a speech by Dr. Ian Lipkin, are making the news rounds in the ME/CFS world this week.

These findings are supposedly a big deal because the study was the largest of its kind and used more sophisticated virus hunting techniques than ever before.  And, the study was a collaboration among a several big name ME/CFS researchers. 

Here's a pretty eye-catching quote from the article:  "With two large sample sets turning up negative in the lab of one of most acclaimed virus hunters on the planet, it's probably safe to say that the hunt for an infectious agent in the blood of people with ME/CFS is over." 

Wait, what?!  If you believe that (and how do you argue with Lipkin?) then all those blood tests we've had with supposedly elevated IgG titers for EBV, HHV-6, and CMV were meaningless. These antibody tests may have suggested reactivated infections, but that was only hypothesis. This new study apparently looked for the actual presence of the viruses (which is more reliable than antibody testing) and found nothing.

Then I wondered, how do you explain why Valycte and antivirals helps so many patients? It looks like the answer might be in the part of the article where Lipkin states that they still believe an infection is the likely culprit, but it's just not present in the blood.  It's likely to be a localized infection, such as an infection in the lining of the gut (as Dr. C has always maintained), or in the Vagus nerve. 

To me, the results are both exciting and frustrating.  I think all of our first choices would have been that the study actually found the culprit.  But barring that, it feels very significant that they allegedly "ruled out" what has been a major focus of research for many years. This will hopefully allow researchers narrow in on other more fruitful areas of research going forward.

Update on Nutrigenomics Treatment

Review

Back in March of this year, I began a nutrigenomics plan to address the defects in the "methylation cycle" that appeared on genetic testing.  The process started with getting genetic testing from 23andME for $99, followed by running the results through a website called Genetic Genie, which analyzes only those specific genes that have been identified as affecting the methylation cycle - one of the body's detoxification systems that has been shown to be defective in ME/CFS patients.  Then, after reading the book and online forums of Dr. Yasko, I implemented a "nutrigenomics" plan to try to address my specific methylation cycle defects.

In the intervening 6 months, I have submitted a couple of urine and hair sample tests, which can be submitted via mail through Dr. Yasko's company.  The point of these tests is to further refine which supplements to take and in what amounts to address methylation issues.  In addition, there are a couple of home urine tests that I conduct on a weekly basis to track progress (more on that below).

Update

These methylation supplements have taken longer to implement that I predicted at the outset.  I would have thought I'd have implemented all the supplements within a couple of months of when I started, but as it's turning out, I'm still in the middle of the process six months later.  The process is supposed to unfold in at least 3 steps.  First, you change your diet and add a series of "basic support supplements" -- these are supplements like multivitamins, magnesium, zinc, Vitamin-D, and different types of antioxidants.   I was done with that step by April and didn't notice any difference in how I felt, but didn't expect to either. 

Then before the next step, you're supposed to address "first priority" genetic mutations, if you have them.  I have one of them -- a so-called "CBS mutation," which leads to an excess build-up of sulfer and ammonia in the body.  So this requires reducing protein in the diet (which I only did very slightly) and taking a couple of supplements that flush the body of excess sulpher and ammonia.  I could track the progress of this with home urine sulfate tests, which eventually showed when I was ready to move on.  

Finally in about July, I was ready to move on to addressing the actual methylation cycle defects.  This step is broken down into two phases.  Dr. Yasko describes that the body has two ways of making the powerful antioxidant glutathione -- which is the end result of a functioning methylation cycle.  The first is a "short cut" chemical reaction, and the second is the "long route" chemical reaction.  If the methylation cycle is working properly, both routes are producing glutathione.  Dr. Yasko recommends that patients address the short cut first.  

I had the short cut supplements implemented by about early July.  These supplements include an phospholipid complex called, for short, "PS/pc/pe," and DHA (which I was already taking).  An optional third supplement was an RNA Supplement called "Methylation Support RNA." This supplement is expensive and there is some controversy about the efficacy of Yasko's RNA supplements, so although I tried it, I didn't renew when the bottle ran out in 3 weeks. 

By late July, I experienced a noticeable uptick in my health.  My daily health rating for August was the highest month yet by more than a 3% increase, which on my health chart system is a huge increase. Previous increases were typically small fractions of 1%.  So I'm wondering now if this PS/pc/pe complex was a key component of this improvement.  Of course, one month of improvement could be an anomaly, so we'll have to wait and see.  

In the mean time, I've started adding long route methylation supplements, namely the hydroxy- and adenosyl- forms of Vitamin B12, but there are other supplements to be added so it will be a while before I know these "long route" methylation supplements will help.   

Friday, August 30, 2013

How big a role do mycotoxins play in ME/CFS?

The only explanation for the etiology of ME/CFS that makes sense to me is that it is a disease of complex origin, with multiple contributing factors.  I simply don't believe that if ME/CFS had only one cause (say, a virus) that its origins would have eluded so many dedicated researchers for this long. I believe that, like autism, multiple sclerosis, autoimmune diseases in general, and other diseases of inflammation, we're dealing with a complex nexus of environmental, pathogenetic, genetic, dietary, vaccine-related, and possibly stress-related factors.

To my mind, this multiple causation theory is the only theory that explains why ME/CFS and other "chronic illnesses of unknown origin" aren't more common than they are.  If it's environmental, then why don't all members of a moldy household always get sick?  If it's solely genetic, again, why haven't we seen a clear lineage of ME/CFS being passed down in affected families?  (Sometimes we do, sometimes we don't).  If it's a pathogen, why don't all people with high EBV and CMV titers get ME/CFS?  Why don't we all have borrellia?

I personally don't believe there's some mystery pathogen out there that we haven't identified yet (ala XMRV).  I believe if it existed, it most likely would have been found by now.  One even hears the theory that ME/CFS tends to hit "type A" personalities more often, but if that's true, I know quite a few people who are much bigger "stress cases" than me and they're doing just fine.  Vaccines?  Well, you know where I'm going with that....

Instead, I believe that when they finally solve ME/CFS, they'll discover that us PWMEs are the unlucky few who suffered the chance convergence of triple or quadruple insults to our systems, often all within a short period of time.  If you read enough PWMEs' "origin stories" they almost all describe a piling on of various factors: a stressful event, then a viral infection, followed by a vaccine, etc.

By the way, take a moment to think about what order of importance you would have placed these five commonly suspected factors in ME/CFS.  My order, from most significant to least would probably be:

1.  Pathogens
2.  Genes
3.  Vaccines
4.  Dietary
5.  Environmental
6.  Stress-related (I question whether this even belongs on the list)

(Have I left anything major out?)

I couldn't even tell you why I've ordered the list in this way.  It's the gestalt product of hundreds, maybe thousands, of articles, blogs and forum posts that have washed over me and are now sloshing around in my head.  My ordering is likely to shuffle at any time based on the latest CFS Facebook link, or some fad theory making the rounds.

Now consider that the path to ME/CFS is likely different for each patient.  Maybe Patient A's path to ME/CFS was 80% environmental, and he was then pushed to the brink (another 19%) by pathogens and a little stress was the coup de grace.

And Maybe Patient B has a homogenous MTHFR genetic polymorphism, which gets her 50% there, and a vaccine at an inopportune time finishes the job.  The different pathways to ME/CFS could be endless.

(Side note: with these complexities, not to mention the complexities of our ever evolving symptoms is this "multi-system" disorder, I believe the best chance we have to get to the bottom of ME/CFS is through compiling vast data banks of detailed patient histories and then applying complex data analysis techniques.  This, of course, depends on as many of us as possible participating in patient databanks like the Open Medicine Institute's, discussed in this post)

                                                                  ____________________

All of that was my prelude to saying that I've been rethinking the role of environmental issues, particularly mycotoxins (mold-related toxins).  For a friend of mine, this has been the key to his improvement in recent years.  He had to go to great lengths to enact this improvement, even moving to a city with drier, cleaner air, and then renovating his home to remove mycotoxins and environmental chemicals.  It hasn't cured him, but he has done a remarkable 180 and can do things that I can't even consider right now.  And more importantly, he has control over his crashes, for the most part.  If he crashes, he knows why and he knows what he can do about it (get out of the triggering environment.)

That same friend recently posted this article that has me rethinking the role that environmental factors might play in my illness.  I think all patients should read it and consider whether mold is an issue for them (if you haven't already): http://www.bulletproofexec.com/how-your-house-can-make-you-weak/

As I told my friend, I have always intended to investigate mold issues as a factor in my illness, but it becomes hectic when you're chasing so many different possibilities and treatments. Even high priority questions like mold could take me years to get around to at my current rate.  There's only so much I can investigate at once.  But I'm now moving "mold" up higher on my list of priorities.
                                                                  __________________

For those like me that haven't had a chance to consider mold very much, here are a few other sources to get you started:

  • Mycotoxins are the main focus of one of ME/CFS's more well-know physicians: Dr. Shoemaker.  I admit, I haven't even had the chance to learn the first thing about Shoemaker's theories.  

One thing that gives me pause:  When I search the Internet for studies or articles on the role of mold exposure in ME/CFS, all results point back to this one study linked above.  I'd like to see it replicated and peer reviewed.  (This is when the progress of ME/CFS research becomes frustratingly slow...)

Wednesday, August 28, 2013

So a man walks into a gym...

Yesterday I stepped foot in a gymnasium for the first time since before I became ill.

For the first year or so that I had ME/CFS, I didn't do any exercise.  I didn't feel up to it all, and if I tried, I crashed.  My resting heart rate at the time was already in the 100s, so it felt like any exercise would make my heart explode. And I won't even get into the problems with POTS and exercise.

Then with a little improvement, I started doing some Tai Chi, which is pretty much the most mellow form of exercise you can possibly do.  I hesitate to even call it exercise.

After a while, it became clear that I could handle Tai Chi with no problem, and I began to feel the urge for that old after-exercise feeling.  You know, that feeling where you're relaxed and that your blood and lymphatic drainage system is flowing more freely.  So as my treatments progressed and I started to feel better, I moved on to yoga.  First I started with my wife's low-key prenatal yoga videos.  Then I moved on to regular yoga videos and to doing sequences of "asanas" that I remembered from my days of taking yoga classes.

During this period, I also started doing far infrared sauna sessions every 2 or 3 days, which for some reason, always left me with a feeling like I had exercised.  Truely, the feeling is almost identical, and I even record my sauna sessions in the same column as my so-called "workouts" on my health charts.  I believe that the same principles are at play: blood flow and lymphatic drainage.

In the last few months, I have graduated to lifting weights at home, trying to gain back some of the over 35 pounds in muscle mass that I lost when I got ME/CFS (OK, some of it was fat!).  I don't want all of it back, but half would be nice.  My goal is to get up to about 195-200 lbs (88-90kgs), which is what the Body Mass Index says is ideal for my height and build.  I am at about 194 lbs now, so I'm close.

I lift smaller weights than I lifted before ME/CFS, as the goal here is not to build showy "beach muscles" but rather to improve my health and well being.  Excess build up of lactic acid would only be counterproductive to my goals.

Yesterday, I took the next step and actually went back into a gym.  Although I have a nice collection of different sized dumbells at home, my home workout options are limited when it comes to leg exercises, and I definitely don't want to be one of those people who has solid upper body mass, balanced on top of toothpick legs.  

Credit: WeKnowMemes

So I cautiously banged out (oxymoron?) a few sets of leg presses, calf presses, and leg raises, and then I rode a reclining stationary bike for ten minutes. (The reclining bike is better for keeping your heart rate in check. Most gyms have at least one).  The whole time I wore my heart rate monitor and made sure to keep my heart rate under my estimated AT of about 100-115.  I found that I could more or less make it to hover just below my AT and stay there if I carefully monitored it and adjusted my pace accordingly.

Let me be clear about one thing, I'm not suggesting that these exercises are responsible for my improvements.  The improvements came first, likely from treatments, and the increased levels of exercise followed.

But the whole point of this post is this: Damn it felt good to be back in a gym.  That feeling that I've had for the last two years, that I'm an alien in the world of the physically active, melted away for an hour. Simply being around the hustle and bustle of a gym, the people running around in their slick workout outfits, carrying towels, feeling good, wiping down equipment--it felt right.  Everyone's iPoded up, struttin' their stuff, in their own worlds.  (It's quite comical, actually.)  I even welcomed that gym-y smell of stale sweat.

So far today I feel OK, but I wouldn't expect a PEM crash until tomorrow if it comes.  If this experiment works out, I plan to make gym trips a once-a-week thing.  I'm always wary of pushing too hard and relapsing, but at the same time, I need to find out exactly what my limits are as they change over time.  As the respected Dr. Klimas has said, doing as much "exercise" as we can do without crashing (and that's the key), however much or how little that may be, could be a key factor in reversing the dysfunctional gene expression that we experience.  This is a controversial opinion, as many patients report being made worse by even the slightest of exercises, but in my case, I think I'll continue on my path and proceed cautiously.

Monday, August 26, 2013

Open letter by Dr. Montoya

A friend of mine who is a patient of Dr. Jose Montoya at Stanford University brought this letter to my attention.  In it, Dr. Montoya summarizes all of the ongoing research that he and his team at the Stanford Initiative for Study of Infection Associated Chronic Illnesses (that's a mouthful!) have been working on.  And a few more that they will be working on soon.   

The entire letter is worth reading, but I wanted to highlight a few points:

In reference to his study of infectious pathogens that may contribute to chronic diseases, Dr. Montoya writes:
"Towards this end we are collaborating at Stanford with: Manisha Desai, Ph.D, Clinical Associate Professor of Medicine and Holden Maecker, Ph.D, Director, Human Immune Monitoring Center, and my colleagues at Columbia University Medical Center in New York City: W. Ian Lipkin, MD, Director, Center for Infection & Immunity, and the John Snow Professor of Epidemiology, and Professor of Neurology and Pathology and Mady Hornig, MA, MD, Associate Professor of Epidemiology."
It's things like this that get me charged up.  It seems we're starting to see more collaboration among the heavy hitters in the ME/CFS research world.  When doctors like Montoya and Lipkin start collaborating, it's hard not to believe that good things are coming.

The other tidbit I liked was the section on gene expression:
Investigation of gene expression and immune system dynamics of infection in acute and chronic diseases: 
Our team is currently working on new studies to understand the immune response and possible immune dysfunction observed in our patients. We are looking at gene expression, cytokine profiles, and phospho immunoflow to learn whether our patients’ immune response correlates with the presence of pathogens and other infectious agents. We have embarked on the task to identify new biomarkers that may help predict changes in disease over time and response to changes in medication. 
I like that they are studying the nexus of the immune dysfunction and gene expression in ME/CFS, as these are the two main focuses of my treatments.  I truly believe, in my case at least, that immune dysfunction is at the center of my problems, and that genetics may provide the best clues to how to reverse it.  

I'm not sure how I feel about the use of the word "possible" next to "immune dysfunction"?  C'mon, I think we're way past the point of mere "possibility," right?  I'm mostly kidding.  Scientists still consider gravity a "theory," so I guess the bar for conclusiveness is set pretty high.     

Tuesday, August 20, 2013

What if....


I know a joke's not funny if you have to explain it, but I feel I should explain this one before someone gets upset at me.  This is simply the thought that popped into my head after reading a forum thread about how poorly ME/CFS patients have been treated by others.  That lack of basic empathy from some people, and the inability to understand the simple idea that not every disease is fully understood, seems like a kind of sickness in and of itself.

Friday, August 16, 2013

Update on my new brain fog medicine

I don't even want to put the name of the drug in the title or first sentence of this post because that's when it gets picked up by Google and I start receiving unwanted hits from outside the ME/CFS community.

Now that we've dispensed with that space-filler, I can tell you we're talking about Adderall.  My first post about Adderall was here.

Yesterday I had another, more serious attack of brain fog -- one that would have crushed last Friday's brain fog into oblivion.  So this was a better test for the Adderall.  Again, I took only a quarter of a 20 mg tablet (for those that are math challenged like me, that's 5mg, which is a very small dose).

My impression is that Adderall isn't going to be the wonder cure to brain fog that I had hoped.  Granted, I took a very small dose, but something tells me a higher dose won't matter.  I didn't feel that the Adderall really cleared the brain fog or reduced the feeling of brain inflammation, rather, it simply made it easier for me to power through the brain fog and focus my thoughts in spite of the fog.  But whenever I took a break from whatever I was focused on and assessed how I was feeling, that tell-tale sense of brain inflammation was still there.  Somehow I don't think a higher dose will change that.

The best analogy I can come up with is, imagine that having no brain fog is like running on a flat hard surface.  Brain fog is like trying to run in 2 feet of water.  So I was hoping that the Adderall would take the water away.  Instead, it simply built up my leg muscles so that it became easier to run through water, which is of course helpful, but not nearly as good as if the water were gone.

I'd be curious to hear from any other ME/CFS patients who have taken Addy if your experiences were the same.

                                                            _________________

For now I think my best bet for clearing brain fog is to get back on Vitamin B12.  I hardly ever had brain fog issues during the 9 months that I was on a B12 protocol previously (Fredd's protocol), and it only started creeping up after I stopped taking B12.  (Coincidence? Maybe, but B12 is the most oft-cited treatment for brain fog on the message boards, by my assessment.)

I'm just now finishing the preliminary steps and the "short route" supplements in Yasko's protocol, so I'll be adding B12 back into my regimen again soon.

Tuesday, August 13, 2013

I have a high temperature...which is good!

I had a good day all of yesterday -- well above my baseline. Then at night, I started feeling really weird, with a headache and body aches and what felt like a fever.  It almost felt like how I used to feel when I got sick, which is somehow different than now with ME/CFS, even though I would describe both symptom sets as "flu-like."  So I took my temperature preparing for it to be a disappointing 97.2 again, but it actually got up to 99.6!   I was very happy about this. Dr. C has always told me it would be a good sign if I ever got an honest to goodness fever - which I think that qualifies.  It is apparently a sign that the immune system is fighting back.

This morning my temperature was back down to 98.7, which is still very high for my post-ME/CFS self, especially for the morning.  But it's not technically a fever anymore. So who knows, but maybe this means something good and maybe it doesn't?  


I am encouraged simply because I have never had any temperature this high since before I came down with ME/CFS.  Every time I thought my temperature was high, it would turn out to be low -- usually in the low 97s if not in the high 96s.  So this low body temperature has always been a hallmark of ME/CFS for me; an objective, tangible measurement of one thing that makes ME/CFS different than all my previous, non-chronic illnesses.  If that has somehow changed...well, I can't get ahead of myself yet.


Since I'm out of paid time off (PTO) for the year, except for two days which I'm saving for later, I still dragged myself into work today, which is fun.  


This is like a trophy photo for me. I'm quite proud of it.

Sunday, August 11, 2013

Dr. Appointment: New Treatment and Some General Life Musings

This past Wednesday I had an appointment with my "B Team" ME/CFS specialist, Dr. W.  Usually I don't even blog about my appointments with him anymore because they've settled into a routine where we simply check my labs and renew prescriptions as necessary.  But this time we added a new high-risk, high-reward treatment.

I told Dr. W that most of my symptoms have shown improvements, although slight, over the past six months, except one.  Brain fog.  I used to get brain fog only rarely.  When it hit, it was utterly crushing.  It would prevent me from doing anything but sitting around feeling sorry for myself.  (I wrote about how bad my brain fog would get in this post from February.)

Over the last six months, the situation has gradually changed.  I don't think I have had even a single episode of crushing brain fog since that February post.  In its place, I have been gradually getting more and more frequent episodes of a more subtle brain fog--a much more mild version where I am still mostly functional.  As of recently, I would estimate the brain fog is there about 1/3 to 1/2 of the time. It makes me wonder if I'm even dealing with the same type of "brain fog" as before.  Maybe this new version is caused by something completely different altogether.

I asked Dr. W about a treatment called Vyvanse, which was brought to my attention by my friend Bret, who I know through this blog, and more recently, some other patients.  Vyvanse was developed as an ADHD drug, and is one of the newer drugs for that purpose in the same class as older drugs like Ritalin and Adderall.

Dr. W stated that he didn't have enough experience with Vyvanse to feel comfortable prescribing it, and besides, most insurance companies don't cover it for off label uses yet.  Instead, he recommended Vyvanse's cousin Adderall.  I was receptive to the idea of Adderall on an as-needed basis for brain fog because I've seen a number of other PWME's post about their positive experiences with it.  So he decided to start me with Adderall and said that he would look more into Vyvanse in the mean time.

Now, here's the serious rub: Adderall can be habit forming, especially when taken every day.  We had a frank discussion about ways to avoid addiction.  My goal is to use it in small doses (much smaller than would be given for ADHD) and only as needed when my brain fog is particularly bad.  To help force me to pace my dosing, he prescribed me only a two month supply with no refills.  My next appointment isn't for 5 months.

On Friday, I tried my first dose - a tiny crumb from one of the tablets.  I believe there was a definite improvement of mental clarity, which lasted for about 4 or 5 hours.  Even after it wore off, it seemed that my brain fog was gone for the rest of the day.  I haven't tried it again since, but that initial test was promising.  At the same time, I know I have to be careful with this drug.  I will update as necessary...

                                                          _________________

I had a particularly good week health-wise with no major crash days and decent functionality.  And so I feel like I'm in a good place, mentally, right now.  I understand this is easy for someone like me who's only moderately ill to say.  But in my present state, I feel like I can carve out a happy life for myself even if I never improve any further.  Of course, I always feel like that when I'm on a hot streak.  If I crash tomorrow, I'll feel much differently.

Monday, August 5, 2013

Some ME/CFS projects in waiting

Ever since I started this blog, I've felt that I had at least one other ME/CFS-related project in me. Whether it's an advocacy project, or some other kind of community building activity, I feel like I have something else to give.  Of course, I'm taking the long view on this, and not necessarily going to dive into something right this instant.  Then again, if the stars align, maybe I will.  For now I just want to get down a few of my ideas in writing.

1.  An ME/CFS Podcast or Webcast

At first this idea seemed dauntinglike it would require an immense amount of technical know-how and expensive equipment.  But after a little research, I'm now convinced that it could be done fairly cheaply and with minimum technical skill.  There are apparently several brands of inexpensive software to help amateurs produce a podcast with relative ease.

I envision it working like this:  First, I would not attempt it alone.  I would want at least one co-host, but preferably two.  A mix of genders would be best.  We would meet online remotely for the show's taping, which amounts to a glorified conference call but with better audio quality.  We would produce one show per monthany more is unreasonable to expect of chronically ill people.  

Before each show's taping, the hosts would circulate and collaborate on an agenda.  The show would have three segments.  In the first segment, the hosts read and discuss a few of the major headlines from the ME/CFS world from the previous month.  The banter would be a mix of informative (based on the hosts' research), but mostly personal perspective and friendly debate among the hosts.  As the show grows, we would try to bring in occasional guests for interviews.

The second segment would raise topics of a more "social support" variety.  There are literally endless numbers of life-with-ME type topics that could be gleaned right from the ME/CFS message boards.  In the final segment, we would read select listener emails and discuss whatever topics the listeners raised.

The overall idea would be to generate a good mix of information and entertainment content - especially for those PWME's who have visual or neurological issues that make extended computer use difficult. Obviously, there are a number of logistical hurdles that would have to be overcome to get this project going, but with the right partners, I think it would be a fun, worthwhile, and hopefully valued by a certain segment of our community.

It also occurred to me that, rather than doing a  true "podcast," the show might be accessible to a wider audience simply uploading it as an audio file to YouTube.

2.  Annual Awards

As far as I know, the ME/CFS community doesn't have any awards to....um...award.  I've seen a few bloggers who have won general "health blogger" awards, but nothing for our community specifically. In my view, the awards wouldn't have to be limited to just bloggers.  We could award researchers, journalists, foundations, doctors...whatever we can think of.

I haven't decided yet how the nomination process would work (maybe open submission by email), but I would want the final voting to be open to all members of the community.  That way, the winners can have the satisfaction of knowing that they were chosen by the community at large.  The website could briefly profile all of the nominees before voting begins.

I wouldn't want to present the awards, alone, from my humble little blog.  Rather, I'd either set up a separate foundation with it's own website, or partner with a site that has more name recognition in the community.  As for the name of the awards, most likely, we might simply take the name of my partner's organization and add an "s" to the end, ala Emmys, Grammys, Tonys, etc.

No money would come with the awardsjust an honor.  At first, the awards might not mean much to the recipients, but as the years pass, I hope the name recognition would catch on and the recipients would receive it with pride.

Off the top of my head, a few categories to consider:

-Achievement in ME/CFS research
-Excellence in ME/CFS patient care (by a doctor or other health care professional)
-Patient advocate of the year
-Blog post of the year (journalistic style)
-Blog post of the year (personal/opinion)

I haven't decided yet if the awards should include some sort of tangible plaque or trophy, or if we would simply inform the winners of their recognition and maybe forward an electronic badge or emblem that can be posted on their website.  I'm leaning toward the latter because, well, it's free.

3.  Supplement Exchange

I of course can't take credit for this idea.  It has been talked about on forums a few times that I can remember.  But as far as I know, it has never gone past the "idea" stage.

There are an enormous number of us with large boxes of unused supplements at home. Often we've tried one or two capsules from a $30 bottle and realized we don't react well.  If that occurs two, three, four or more times, suddenly we've got a lot of money tied up in inventory.  Wouldn't it be great if we could all exchange our inventories for something else we can use?

Ideally, we'd want a separate website just for this function, as opposed to a messy sub-forum or some other site that's not tailored to this particular use.  Each user has an account profile, which they populate with the names, expiration dates, and approximate quantity remaining of each spare supplement they have.  If one is looking to make a trade, they log in, search for someone with the supplement they need and propose a trade.  Both parties simply pay to ship the supplement to the other person.  

Naturally, there would be a temptation by some to list and exchange prescription drugs, but for legal reason, this would not be allowed.

A downside to this idea is that I have absolutely no computer skills, so I'm really just posting this in the hopes that someone might take this idea and run with it!

Wednesday, July 31, 2013

That precarious feeling

Do you ever get the feeling that you're balanced precariously between crashed and not crashed?  Like you could tip in either direction at any time?

I've been feeling that way  ever since about two weeks ago when I caught a mild bug. Unlike other bugs, it was actually so mild that it didn't cause an immediate crash.  The only reason I know that this bug is still hanging around is that it has left me with constant sniffles and post-nasal drip.  That and the return of an old symptom that I thought I had rid myself of after the first year with ME/CFS: morning flu.  During my first year of illness, I would get this particular flu-like feeling that would surface in the morning hours between 7 and 9 a.m.  Then it would usually just dissipate.  Well that's back too.

So I almost feel like a spectator to my own health.  Of course I've upped the zinc and vitamin C doses (still within safe limits), and tried some other tricks, but nothing has resolved.  It's as if all I can do is wait and watch to see which direction I tip.
                                                                    _________________

This past weekend, my wife and I took our kids to my parents' house to spend some quality family time. Everything went well until Sunday when, out of nowhere and within minutes, my wife became ill with a severe flu.  It came on quite strong, with body-racking chills and a high fever.  So we drove home soon after the flu's onset and prepared to enter into a sort of survival mode just to get through the week.

It's not even 3 days later now and Mrs. Calvin is back on her feet nowit was a 48 hour bugbut two things struck me while she was ill.

First, for a brief 24 hour period, I was actually the more functioning, capable member of the team, and boy did I relish every second of it.  It was like I was trying to make up for two+ years of her helping me when I'm down.

The second thing was how quickly Mrs. Calvin recovered.  Within about 30 hours, she had rocketed past me on the functionality scale.  By Tuesday she was attending an important meeting and supervising our daughter's swim lesson.  All the while I'm cringing and trying to cajole her to cancel her obligations and rest up.  Mostly, she shrugged off these suggestions and was no worse for the wear.

It made me realize that in two short years I seem to have lost all perspective of what it's like to have a normal, functioning immune system.  I used to be like her too.  No flu or cold could keep me down for more than about 48 hours.  All that seems like a different lifetime.