Why I use the term "ME" over "CFS"

I feel as if I should explain why I, an American, title my blog an "ME" blog, rather than a "CFS" blog. Naturally, I am aware that the American Centers for Disease Control (CDC) long ago abrogated the term "ME" in the United States, in favor of the more general term CFS.  But, like many people, I believe the term "chronic fatigue" stands as one of the greatest misnomers in the history of medicine.  I won't expand on that topic, as there is literally nothing new to be said.

But I will say that the notion that illnesses should be defined by political entities seems ridiculous.  For purposes of this blog, I couldn't care less what the CDC labels it.  (Well, I do care in the sense that I hope they change it).  But here, I use the term that I personally prefer, national boundaries be damned.

Within my blog entries, sometimes I use ME and CFS synonymously, or as part of the "ME/CFS" label.  I understand the argument of those who say that we shouldn't use "ME" and "CFS" synonymously -- that they represent distinct categories.  Proponents of this argument correctly point out that CFS is a diagnosis of exclusion and, therefore, potentially describes a number of unrelated ailments.  However, the majority of the ME/CSF community uses the terms synonymously.  So while I respect those who fight to distinguish the two, I choose not to make the distinction here.  

I also understand those who say that "ME" isn't an adequate descriptor of the illness because it describes a neurological condition, whereas most people who consider themselves to have ME have symptoms that reach beyond the neurological, including immunological and endocrine.  I agree that, from an etymological standpoint, ME is a poor descriptor. But I still believe it is the better of two terms, so I'll use that for now until we come up with something better.

Suspending LDN....for now

Unfortunately, I am going to suspend the low dose naltrexone (LDN) experiment....for now. I have been on a moderate crash since Wednesday, which is about when I started taking the LDN. The crash and the LDN may be completely unrelated--in fact I think they probably are--but I can't take the chance.  Even if I only have a slight suspicion that a treatment is making me worse, it is extremely difficult to push forward with that treatment in spite of the suspicion.

Unfortunately, a trio of old symptoms which I thought had been resolved, have returned with this crash: shortness of breath, swollen tongue, and G.I. distress. None of these are normally reported side effects of LDN.  I have also experienced the usual side effect of LDN: insomnia.

If/when I return to normal functioning within the next few weeks, I plan to eventually resume the LDN and see if these symptoms return. For now, I'm disappointed, especially since I was doing so well before this crash. I almost wonder if I got too greedy and should have simply left well enough alone and not taken the LDN. There's always a temptation, when we get a little better, to push ahead and try to improve even further. It seems many times, we end up backsliding instead.  Having said that, I'm not ready to write off LDN.  I will give it another chance in the future.  If it fails me again, I will probably drop it at that time.

Maintaining Happiness with ME/CFS

Lately, I have been giving a lot of thought to whether it is possible to maintain my previous level of happiness now that I have ME/CFS. While I certainly wouldn't say that I'm unhappy now, I'm just not as supremely spirited as I was pre-ME. At first, I thought it would be impossible to be as happy as before ME. But after giving it more thought recently, I'm not so sure.

The concepts of quality of life and happiness, while similar, are distinct. The definition of "quality of life" includes physical and mental health, recreation and leisure time, and social belonging. Now, I don't think anyone, no matter how much they try to delude themselves, can deny that ME/CSF strikes a major blow to quality of life.

But is it possible to maintain happiness while suffering a reduced quality of life? Theoretically, I think the answer is yes.

I'm reminded of a lyric from the song The Will to Live, by Ben Harper:

Then I met a man who had to walk with his hands.

Born into a world he couldn't stand. 

Blessed with life but cursed as a man. 

Still he walks taller than most of us can

Most of us probably know someone who, despite being dealt a bad hand in life, seems inordinately happy. There's a gentleman that works in my office building who is confined to a wheelchair. I pass him in the halls and elevators, and we chat in the the lunch line. He seems, by all indications, to be one of the happiest people around. While I'm sure he deals with his share of pain privately, one cannot fake his apparent level of happiness on a consistent basis. He always seems to be laughing and joking and making new friends.

So I'm interested in how people facing such adverse circumstances manage to remain happy despite reduced quality of life. These examples tell us that it's possible, and I'm beginning to sense that I will get back there eventually. But how?

I don't have an answer yet, but I will get there. I'm interested in reading the biographies of other people who maintained happiness despite challenging circumstances; people like Helen Keller. I think I will incorporate my search for answers as an ongoing theme of this blog. And, as always, I'm interested in hearing from other people who've pondered this question...

My hot streak ends, but there's good news on the horizon

Finally, after 15 days of high functioning (above 75%, with only mild flu-like symptoms), I came crashing back down today.  But this time, instead of bemoaning the crash, I just feel thankful for an unprecedented run of good days.  I knew it had to end some time, so I tried to enjoy every minute of it while it lasted.  I haven't strung together 15 good days since I became ill in June, and one of those days was my best ever (based on my personal rating scale).  I'm not sure if the Famvir or the methylation protocol had anything to do with it, but it's certainly possible.  

As for what caused the crash, I have two theories.  1) I ran a couple of errands yesterday and allowed myself to become stressed out.  I ran late for two appointments, and found myself speeding around and yelling at other drivers.  It felt so good to be part of the world again, I got carried away.  While I wouldn't normally think this could cause me to crash, I've been warned by so many veteran ME/CSFers that days like this can cause a crash, that I tend to defer to their expertise. I simply have to learn to take it easy when I'm feeling good, or I'll be doomed to repeat this cycle.

2)  The other possibility is that the crash is a reaction to taking low dose naltrexone (LDN).  I began taking it last night, starting with a very low dose of 1.1 mg.  But, the commonly reported side effect of starting LDN is insomnia, not fatigue, so I'm less inclined to give credence to this theory.

Finally, the good news!  I've been on the waiting list for my first choice ME/CFS specialist doctor, but his schedule is so impacted, he couldn't see me until late August!  I just learned a few minutes ago, by a stroke of good fortune, my appointment has been moved up to April 27th--four months earlier than expected!  I'd do a little dance if I had the energy.  If you're reading this, thank you to the person who helped move my appointment -- you know who you are!

Stevia chocolate: a godsend

Since eliminating all bread and processed sugar from my diet in November, my taste buds have been protesting against this cruel depravation. They're screaming for stimulation. Much like me, they've been struggling to adjust and accept their new limitations.  Also like me, they try to bargain with these limitations, to cut corners, and to cheat the system. And as we have both found out, there aren't too many ways to cheat the system.  For the most part, we're stuck with our new limitations.

As part of this bargaining process, we went online a couple of weeks ago to explore what stevia-made sweets might be available for mail order. As it turns out, there are virtually none. The US stevia industry is simply too new to have gained a foothold. My heart sunk.

That's when Mrs. Calvin came to the rescue.  Being nothing short of a genius in the kitchen, she concocted a bowl of stevia chocolate syrup, which, upon first taste, almost had me weeping with joy.  OK, not really "weeping," but, it's difficult to overstate how glorious a bite of chocolate can be after a four month drought.  

We now keep a bowl of this chocolate syrup in our refrigerator at all times.  I drizzle it on plantains, berries, yogurt, almonds, walnuts, and just about anything else that fits in my diet.  I even made chocolate milk using almond milk.  The picture below is my dessert tonight.  Or, I should say, was my dessert.

Stevia chocolate on plain yogurt, topped with flax seed meal

If you'd like the recipe for Mrs. Calvin's stevia chocolate syrup, let me know in the comments and we'll figure out a way to get it to you.  I can't publish it because it's a modification of a recipe that is published elsewhere and...well...I don't want to get sued.  

HealKick

I recently found HealKick, a social networking site for people with ME/CFS and other neuro-immune illnesses who are under the age of 40.  At first I wondered, does age really matter when talking about ME/CFS?  When it comes to exchanging purely medical information--treatments, doctors, etc.--no, age usually doesn't matter.  But, as I'm beginning to see, other social aspects of ME/CFS can be age-specific.

I've only just started exploring the site, but I like what I see so far.  While there's no shortage of medical discussions, the site's strength comes from it's fun, social atmosphere.  It reminds me of a line from the recent Best Picture nominee, the Descendants: "We just, I don't know, we deal with our shit by talking about other stuff and having a good time." -Sid.

HealKick creators encourage members to use their real names instead of handles, and real photographs instead of anonymous avatars.  This lends the site a more personal feel.  Apparently, the site also hosts a large group video chat every Friday, although I haven't had an opportunity to participate yet.

HealKick is still relatively new (created in the Fall of last year), and its membership appears to be growing steadily.  Right now, it's membership is about 10% of Phoenix Rising (470 to PR's 4700+), but that gap should narrow over time.  Although, with its age restrictions, I don't think HealKick will ever lose it's tight knit community feel.

If you're a PWME under 40, it's worth checking out.  And if you do, say hi to me while you're there.

On a hot streak!

Like a lucky gambler at the craps table, I'm on a hot streak, baby!  I've been feeling pretty healthy for the past week, and even found myself dancing in the kitchen this morning. Now that I'm feeling a little better, I've returned to practicing a yoga-like stretching routine in the mornings, which I used to enjoy on and off before ME.  I haven't experienced any post exertional malaise from the routine, so I plan to continue with it, and maybe work some light weight training into the mix.

 I've also started taking the antiviral Famciclovir (generic for Famvir) and haven't experienced any start-up reactions.  Like most anti-virals, Famciclovir works by preventing the viruses (in my case, EBV and HHV-6) from replicating and infecting new cells.  It does not actually kill the viruses, so it's not likely one will see exprience short term results from Famciclovir. (See Dr. Lerner article, at Section II.)  The benefit from Famciclovir comes as the cells that are already infected with the virus die off and are replaced by uninfected cells.  I've read different reports on how long this takes: from a couple of months to a couple of years.  I plan to research this further.  

I haven't yet started taking the low dose Naltrexone (LDN) because I prefer not to start two new medications at once.  I'll probably begin taking LDN some time next week.  Meanwhile I'm still slowly titrating my dosages on the B12 protocol.  I started working Dibencozide into the protocol this week.  I'm hoping the cumulative effect of these treatments will, if not cure me, at least get me feeling close to normal again.

While all of these things are positive, I'm occasionally reminded that I'm still far from 100%.  For instance, on Sunday, my wife and I took our baby girl to meet with some of our friends at the Aquarium of the Pacific, in Long Beach.  We walked around the aquarium for several hours, rarely sitting. Prior to ME, this would not have been a problem, but this time, the flu-like feeling came creeping back.  The good news is, it was mostly gone by the mid-day the next day, but the whole experience was a good reminder of where I am on the road to healing, lest I get ahead of myself.

Book Review: In Defense of Self

I've added a new review to my ongoing ME/CFS book review page.  The text of the new review is below.

In Defense of Self: How the Immune System Really Works, by William R. Clark

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

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

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

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

Naltrexone for ME/CFS

Yesterday, when I asked my doctor about immune modulators, he seemed eager to prescribe me low dose Naltrexone.  I had never heard of it, so I decided to research it before filling the prescription.  This post is a summary of my research.

A site called Low Dose Naltrexone seems to be the best for general information.  After that, my next stop was the Phoenix Rising forums.

The only "problem" with the great Phoenix Rising (which I love) is that there's often too MUCH information.  The current thread on Naltrexone is 74 pages and growing.  Who has time to read all that?  Well, I intend to anyway, and this post will be my ongoing summary of that thread.  My citations in parenthesis are references to the post #s within the thread (found in the upper right corner of each post). 

First, Naltrexone was originally developed to help drug and alcohol addicts with their dependency issues.  It also helps people who have chronic pain, as it seems to reduce inflammation, so it can be especially useful for those who have fibromyalgia in addition to ME.  For ME patients, it is usually given in low dose, of 4.5mg or less.  In it's low dose form, it is known as LDN, for low dose Naltrexone.  Some people take as little at 0.5 mg. (50)

Alleged Benefits of LDN

One poster made the following claim, which if true, is exactly what many of us need: "LDN is an immune modulator rather than a booster. It is supposed to increase NK cells. It is also supposed to shift the immune system from Th2 dominance to Th1 dominance--which would allow the body to better fight a retrovirus." (136).  It is not clear, however, what this poster's source it. I couldn't find it through a Google search.  A few others in the thread posted positive experiences with LDN, saying it improved their brain function and energy levels. (721).  People with Fibromyalgia or other inflammation conditions report the best success rate because LDN also works as an anti inflammatory.  

Side Effects

The main side effect reported was insomnia when first starting Naltrexone, which usually abates after a few weeks.  The most common advice is to start at a very lose dose - maybe 1 mg, and slowly work up to higher levels as sleep normalizes.  One poster took 3 months to work from 1.5 mg to 4.5. (72)  The same poster said that every time he titrated up to a new level, he experienced a Herx reaction as his immune system kicked in. (123)  Others also report start-up reactions. (34).  Still others report losing weight rapidly after starting LDN. (127).  Others said it helped them gain weight.

My Conclusion

Well, I still have about 1/2 of the thread left to read (I'll update this post as I go), but I skipped ahead to the last few pages.  Those who tried LDN and stopped due to side effects (mostly insomnia) or ineffectiveness, seem to outnumber those who benefited.  Then again, if I try it and it doesn't work at least I'll know. So I've decided to give it a try, at least long enough to see if it improves my NKC function in the next round of tests...  If LDN doesn't work, I may try Immunovir.

[3/22/12 Update: I've finished the reading the PR thread, and read a couple other LDN threads from other sites. In my estimate, LDN was reported as being effective for less than half of people who posted in these threads...but barely less than half.  If it even has a 40-45% success rate, it seems it would be worth a try for most PWMEs].

New Round of Labs: Low Natural Killer Cell Activity

Low Natural Killer Cell Activity

I had my third appointment with Dr. W (ME specialist) today, and confirmed what we both already suspected: my natural killer cell (NKC) activity is low.  What surprised me was exactly how low.  Out of a reference range of 8-171, mine tested 8.

We all know that the medical community hasn't agreed on a set of biomarkers for ME/CFS, but most would probably agree that low NKC activity is one of, if not the, most common marker.  Most of us have it.

So I have mixed feelings about my particular result.  It was somewhat vindicating to confirm what I already knew--that I truly have ME/CFS.  But it's also scary to see such a clear deficiency in an critical bodily function.  Not only do NKCs keep viruses at bay, they help defeat cancerous cells--often killing cancerous growths without us ever knowing about it.  Now, apparently, I'm more susceptible to cancer.

But you can't live life in fear.  For as long as this NKC problem persists, I will simply make sure that I get regular cancer screenings.  That's all I can really do.

Starting an Anti-Viral Drug

At my last appointment, Dr. W and I discussed the possibility of using an anti-viral medication to control the reactivated Epstein-Barr and HHV-6 infections.  He mentioned that he normally prescribes either Valtrex or Acyclovir.  I spent the intervening months researching these two options.  As part of that research, I came to the conclusion that a third option, Famvir, was probably superior to these others.  While all three are effective against EBV, Famvir is supposed to have a broader spectrum and be more effective against HHV-6 and other herpes-family viruses.  Since my insurance covers all three medications, I came into today's appointment intent on coming away with a Famvir prescription.  

Dr. W was reluctant to prescribe Famvir, to say the least.  So this was the first time I gave him major push-back on one of his recommendations.  He ultimately agreed, but admitted that he had no idea what dose he should prescribe.  After the appointment, Dr. W researched dosage information and wrote the prescription for 500 mg/2x day. 

I also mentioned that many PWMEs report having success with a combination of an anti-viral and an immune modulator.  This seemed to perk up Dr. W, as if he'd been waiting to suggest it himself.  He wrote a prescription for low doses of something called "Naltrexone."  I've never heard of this drug, so I'll certainly spend a couple of weeks researching it before filling the prescription.

Candida Dies Hard

The biggest surprise was that my Candida titers had hardly dropped at all.  They are still alarmingly high.  This was after 2 weeks of Diflucan (I couldn't finish the full 4 weeks due to kidney pain), months of coconut oil,  months of Pau d'Arco tea, and an absolutely unwavering commitment to a strict Candida diet.  What do I have to do to kill these buggers?  

Since I apparently don't tolerate Diflucan very well, Dr. W prescribed the next best thing: Nystatin.  Nystatin is actually much less toxic than Diflucan and can be taken for longer periods of time, so I am hopeful it will be effective this time.  

The Good News

The good news was that some of my vitamin and hormone deficiencies have been corrected...at least partially.  My vitamin D3 levels are now optimal, and my thyroid levels are closer to optimal.  I rarely get cold hands and feet any longer, so I know that the thyroid supplementation must be working.

Name the Movie

I am slowly climbing out of the crash that started last Sunday, with the help of antibiotics.  When you stay home from work you have seemingly endless amounts of time to drink fluids and watch movies, which is exactly what I did.  One of the movies I watched this week, reminded me of my struggle with ME.  It's not a movie that you would initially think relates to ME, but see if you can guess the movie from these [slightly altered] quotes.  All 3 quotes are from the movie's main character:

[On post-exertional malaise]  "I don't feel the sickness yet, but it's in the post. That's for sure. I'm in the [ME/CFS] limbo at the moment. Too ill to sleep. Too tired to stay awake, but the sickness is on its way. Sweat, chills, nausea. Pain and craving. An [illness] like nothing else I've ever known will soon take hold of me. It's on its way."
                                           _____________
"Thank you. With God's help I'll conquer this terrible affliction."
                                           _____________
[On crashing]. "Preparation. For this you will need one room which you will not leave. Soothing music. Tomato soup, ten tins of. Mushroom soup, eight tins of, for consumption cold. Ice cream, vanilla, one large tub of. Magnesia, milk of, one bottle. Paracetamol, mouthwash, vitamins. Mineral water, Lucozade. One mattress. One television and one bottle of [Tylenol]..."

If you guessed the movie is Trainspotting, you're correct.  Now, I'm not comparing ME/CFS to drug addiction.  But certain themes in the movie resonated with me.  The way I find myself pining for, scheming for, and almost obsessing about returning to health is echoed in the single-minded behavior of Trainspotting's addicts.

When you've been healthy for most of your life and, suddenly, in one day, your health slips away without any warning, you will do almost anything to get it back.  I never imagined that I would be lugging around a lunch pail full of supplements, reading book after book on a single subject, visiting doctors by the dozen, and using much of my free time to search the internet for clues to what's going on.  Yet here I am.

I've come to the conclusion that being healthy is really the ultimate high that life has to offer.  If/when I get healthy again, I'm making a promise to myself to never take a healthy day for granted.  In the meantime, I'm making another promise to myself to not take the better days (the non-crash days) for granted.  When I get out of this crash, I'm going to enjoy every minute of not being crashed.